Angelman Today July - August Edition 2013
-
Upload
angelman-today -
Category
Documents
-
view
220 -
download
0
description
Transcript of Angelman Today July - August Edition 2013
PREMIER DIGITAL EDITION INCLUDING RESOURCES RESEARCH INSPIRATION
Be
Inspired
by Angels
in Action
1
Letter From The Editor
The Motivation
It all began with a thought a series of events like International Angelman Day and meeting other passionate parents After
receiving my sonrsquos diagnosis I immediately developed this strong desire to learn as much as I could about his genetic
condition Since there is currently no lsquotreatmentrsquo available I asked myself ldquowhat can I do to help my son todayrdquo
As I learned of the advancements in research and the wonderful work that the foundations do across the globe I was filled
with gratitude and hope But my time is limited as yours is I wondered how I could stay current with this information
Inspired by IAD I sat down to write a blog post on wwwMeetTheFamaliesofASblogspotcom and the words never came
Instead ideas of a simple resource that can give us information in the quickest way possible directly in the palm of our
hands An online magazine As I talked with Angel Moms they thought it was perfect and had the same idea It felt as
though our conversations on how we are helping our kids was leading up to this
My name is Lizzie Sordia and my son Nathan was diagnosed with Angelman Syndrome shortly after his second birthday
Our story starts out very similar to many of yours It was July to be exact Itrsquos funny how I find myself in this position just 3
years after his diagnosis But I guess this is what happens when you light the fire of a Mother Lion Donrsquot tell me what my
son canrsquot do he will show you what he can do In our journey with Nathan the hardest times were before we received his
diagnosis I knew immediately after birth something wasnrsquot right He was transported to the NICU (Neonatal Intensive Care
Unit) within 24 hours of being born After seizures started we practically lived in the hospital He was so sick and had
uncontrollable seizures that almost took him from us Doctors and specialist didnrsquot know what was wrong Fragile X tests
and others were inconclusive We faced our darkest time alone with the unknown I did not yet know of this wonderful and
helpful community that was waiting for me
Having a sick child and unanswered questions was the most helpless feeling for me and my family and I donrsquot want anyone
to feel the way we did no matter where they are on this planet It is my personal goal to reach them and provide them with
comfort or information which ever they are looking for
Nathan almost received a diagnosis of Autism thatrsquos what they were whispering around the hospital but no one wanted to
officially diagnose him He had many of the same symptoms Thanks to those whispers it lead me to find the brightest
people who knew how to help Nathan and make a difference in his life in a very short time I can now say Nathan is healthy
he walks has a few words says ldquoMamardquo everyday (melts my heart) a few signs sleeps through the night and is making
gains every day
Like most children with AS Nathan (del+) did not start off sleeping very well so since I was up I put that time to good use
I researched and reached out to AS families and learned from their experiences I am going to share my team of experts
with you as well as many others I have met along the way The best news is that there are things we can do for our kids
TODAY Many of you are doing them already
Now more than any other time in history has it been easier to unite people on a global level We are working on translating
this magazine in every language so we can all communicate freely and quickly I want to bring you the brightest minds in the
field of AS including researchers and practitioners who treat our children everyday Doctors that practice functional medicine
and Bio-Medical treatments All of these efforts will equal real suggestions that we can apply and see what will work for our
individual children TODAY Having options is important because there is a lot more going on with many of our kids then just
chromosome 15 and some doctors are missing it the way they missed the diagnosis or they blame AS for some symptomshellip
We will share with you experiences from families everywhere There is nothing more powerful than an experience
Anyone who would like to share their story CAN and you (the reader) can take what you would like from it and use it to help
you on your journey (or not)
This is our life our journey to learn and grow Itrsquos going to be wonderful terrible filled with love hugs and tears We are in it
together to help
Sincerely
Lizzie Sordia
Editor-in-Chief 2
July 2013 Premier Online Edition
Cover Credits
Kaylee Fingold
AS UBE3A
Photographed by
Wes Bonnefin Photography
wwwbonnefinstudioscom
Angels in
Action
Social
Security
Benefits
18 This article will give
you a basic overview of
the options that may be
available for your family
and will provide you with
the information needed to
begin the Social Security application process
6 Understanding Genetic
Classes of Angelman
Syndrome
Charles Williams MD is a
Professor of Pediatrics and
Genetics Division of
Genetics and Metabolism
Department of Pediatrics
University of Florida
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
GF
27 Gluten Free
Living Not just a fad diet find
out its many benefits for
those with Angelman
Syndrome Find out some
of the symptoms that go
unnoticed
15 Angels in Action
Inspiring stories from
families celebrating the
abilities of our children
with Angelman Syndrome
endearing called
ldquoAngelsrdquo
In Every Issue
5 Contributors
AS Research
9 Latest research by Ed Weeber
10 LGIT study by Dr Thibert and Dr Elizabeth Thiele
Low Glycemic Index Treatment proves
Effective at reducing seizures
41 Minocycline update by FAST
Newly Diagnosed Families
6 Understanding Genetic Classes
7 lsquoWelcome to Hollandrsquo by Emily Perl Kingsley
8 Words of Wisdom
Quotes from parents
15 Angels in Action - Krista
23 Angels in Action ndash Shea
29 Angels in Action - Carter
Features
2 Letter from the Editor
Inspiration for creating Angelman Today
4 Our Journey
18 Social Security Benefits
32 RDI Therapy - Relationship Development
Intervention
Angelman Syndrome Foundations
12 Angelman Syndrome Foundation US
13 Angelman Networks New Zealand
21 Angelman Syndrome Ireland
25 Casa Angelman Argentina
41 Foundation for Angelman Syndrome Therapeutics
3
Together we are all on a journey A journey that is the same and different
There is no right way or wrong We span across the globe
There is so much we can learn from one another We can share our experiences
of laughter joy failure and triumph Together our global community
will become connected like never before And we will make great progress Improve the lives of our families
And maybehellip just maybehellip Take part in the ultimate solution
In finding the cure
~Lizzie Sordia Editor in Chief
Our Journey Begins Here
4
Contributors
Karen VanPuyenbroek Associate Editor
Isabel Orellana
Marc Bissonnette
Sybille Kraft
Bellamy
A Big Thank You to our contributors for helping to make this magazine a reality Your talent passion and love for our kids is what Angelman Today is all about -Lizzie Sordia Editor ndash in - Chief
Angelman Today
Edwin Weeber PhD Professor Dept of Molecular Pharmacology and Physiology Chief Scientific Officer USF Health Byrd Alzheimers Institute Director Neurobiology of Learning and Memory Laboratory University of South Florida Healths
Morsani College of Medicine
Charles A Williams MD Professor of Pediatrics and
Genetics Division of Genetics and Metabolism Department
of Pediatrics University of Florida
5
Conducting blood testing to diagnose
Angelman syndrome (AS) can be a
complicated matter Here I summarize the
different genetic causes of AS and provide
general guidelines about how to use genetic
tests to confirm the diagnosis of AS First let
us look at the genetic mechanisms that cause
AS
A chromosome 15 pair is illustrated for each class depicted but the other chromosomes are not shown The P
indicates the maternally-derived chromosome and the M indicates the maternally-derived one The shaded
chromosomes have a paternal pattern of gene functioning while the unshaded chromosomes have a maternal
pattern AS can be caused by either a large chromosome deletion (70 of the time) a disruptive mutations in the
UBE3A gene inherited from the mother (indicated by the X) inheritance from the father of 2 normal number 15
chromosomes (eg paternal uniparental disomy [UPD]) or an imprinting defect (ID) occurring when the
chromosome 15 inherited from the mother has the paternal pattern of gene functioning because of a problem in
the imprinting center (denoted by the small open circle)
In addition to these mechanisms a clinical diagnosis of AS may be given even though the genetic testing is
normal The percentages indicate how common each mechanism occurs
How do we use genetic testing and what is the sequence of testing There are many pathways to diagnosis for
families undergoing testing for AS but the most common testing pathway is summarized here
Understanding Genetic Classes of Angelman Syndrome
Dr Charles Williams
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
6
Welcome To Holland
Welcome To Holland
by
Emily Perl Kingsley
copy1987 by Emily Perl Kingsley All rights reserved Reprinted with permission of the author
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not
shared that unique experience to understand it to imagine how it would feel Its like this
When youre going to have a baby its like planning a fabulous vacation trip - to Italy You buy a bunch of guide
books and make your wonderful plans The Coliseum The Michelangelo David The gondolas in Venice You may
learn some handy phrases in Italian Its all very exciting
After months of eager anticipation the day finally arrives You pack your bags and off you go Several hours later
the plane lands The flight attendant comes in and says Welcome to Holland
Holland you say What do you mean Holland I signed up for Italy Im supposed to be in Italy All my life Ive
dreamed of going to Italy
But theres been a change in the flight plan Theyve landed in Holland and there you must stay
The important thing is that they havent taken you to a horrible disgusting filthy place full of pestilence famine and
disease Its just a different place
So you must go out and buy new guide books And you must learn a whole new language And you will meet a
whole new group of people you would never have met
Itrsquos just a different place Its slower-paced than Italy less flashy than Italy But after youve been there for a while
and you catch your breath you look around and you begin to notice that Holland has windmillsand Holland has
tulips Holland even has Rembrandts
But everyone you know is busy coming and going from Italy and theyre all bragging about what a wonderful time
they had there And for the rest of your life you will say Yes thats where I was supposed to go Thats what I had
planned
And the pain of that will never ever ever ever go away because the loss of that dream is a very very significant
loss
But if you spend your life mourning the fact that you didnt get to Italy you may never be free to enjoy the very
special the very lovely things about Holland
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
7
ldquoThe words of advice I offer newly diagnosed families today starts out a little different than it did a few years ago In the past I might have
suggested parents not jump into researching the syndrome and to ignore the majority of what has been written by experts Today
there is a multitude of valuable information available and it is written by the true experts the parents of the Angelman Syndrome
Community Do your research Read all you can Join the online support groups and ask questions Find local families and meet their
families You are going to see a wide variety of personalities abilities opinions and you are going to feel right at home
Here are a few tried and true words of advice that I still share because they have stood the test of time
1 Never underestimate your child and do not base your expectations on the evaluations of others
2 Your child is your child and unless you are neglecting or endangering your child that does not change because of a diagnosis There
are many people out there who think they know best but a parents instinct and the intimate knowledge they have of their child serves as
the best indicator of what is right and of what needs to be done
3 No matter what the numbers say your child is still one of a kind and always will be A diagnosis is a way of helping you help your child
but it does not define your child or your family Your child has a syndrome The syndrome does not have your child
4 Be a family first Try not to let a diagnosis consume you 247 therapy is not healthy for anyone Love and play are the best gifts you
can give your child and are the best stimulants for growth and development
5 Take care of yourself Take care of your spouse and take care of your other children It is easy to focus on your child with a diagnosis
and not realize you have let other things go We have all tried to be the strong one and prove we can do this but I assure you the earlier
you learn to allow others to help out the easier it will be
6 There will be good days and bad days Your emotions will betray you when you least expect it You will experience the highest and
lowest of emotions and sometimes on the same day You will sweat the small stuff and you will celebrate the small stuff You have
joined a community that will be here for all of this and we will understandrdquo
Brenda Dixon Mississippi
Jonathan - 33yrs AS Del+
ldquoNever accept a doctor telling you that your child lsquowont be able torsquo
Never under estimate you childs potential--our kids love to learn Always
have faith in your gut instinctsMomma (or Daddy) usually knows best
Look forward with faith in the advances and treatments that are on the
horizon but as you struggle (from time to time) in your daily life with an
Angel (and there will be struggles) know that you are not alone--we are
all in this together Dont be afraid to ask questions Support tears
cheers and hugs are just a phone call or Facebook post away Take time
each day to recognize the blessings in your life Enjoy your Angel hugsrdquo
Carol Pulver Florida
Shea Pulver - 22yrs AS Del+
ldquoDont allow anyone even yourself to see a diagnosis instead of a child A child needs a parent more than a therapist or researcher
Yes we need to wear several hats to be good parents - but from your childs point of view he really needs Mommy and Daddy more
than DrTherapistresearcheradvocate - he only has ONE parent or set of parents Sometimes we get so caught up in helping them
that we forget the main point which is to be there physically and emotionally for them From the start concentrate on communication and
functional skills These things cannot wait until theyre older Typical children start learning those things immediately and nobody says
oh wait I dont know how to communicate with you yet - I need to take a class or oh wait youll have to learn to potty train or pull your
pants up and down when youre 15 (and 6 feet tall) its more natural to just hand-over-hand those motions from a very early age and
present communication pictures (or even the objects themselves to choose from) as a matter of course as you go about your day (This
is Dora this is a book - which one would you like)
If it takes years to develop the actual skills its better to start at age 2 and have that skill when theyre 12 then to start at age 12 to teach
skillswhen theyve already got ingrained habits and learned helplessness from having everything done for them Believe my aching
back when I say teaching a child to crawl into his carseat early on will save a lot of wear and tear on your body Kids with special needs
get just as much joy and confidence from doing for themselves as anyone You never know until you try Read Disability is Natural by
Kathie Snow This is common sense advice for parents of special needs kids that they really need to hearrdquo
Lulu Carpenter California
Simon - 23 yrs AS
Words Of
Wisdom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
8
Interested in what research has been published about AS Dr Ed Weeber will tell us how we can search for information and some of the
latest research happening around the globe
How can you get published scientific articles concerning Angelman syndrome research By accessing the free data base
called PubMed (wwwpubmedgov) This valuable resource is developed and maintained by the National Center for
Biotechnology Information (NCBI) at the National Library of Medicine (NLM) and contains more than 20 million references
to scientific articles The search function allows single or multiple terms to narrow the number of ldquohitsrdquo In addition you can
search for authors in order to find all of the publications from a specific researcher Many of these publications are free
and all of them have an abstract to describe the research
A search for the term ldquoAngelman syndromerdquo will reveal 1300 publications with the earliest dating back to 1950 To make
the science a little easier to digest every issue will present a selection of the latest published scientific articles with
Angelman syndrome in the title abstract or key words section of the paper Below are some recent papers that have come
out in the last few months
Title Recurrent fractures as a new skeletal problem in the course of Angelman syndrome
Journal Bone
Authors Rusińska A Dzwonek AB Chlebna-Sokoacuteł D
Department of Pediatric Propedeutics and Metabolic Bone Diseases Medical University of Lodz Poland Maria
Konopnicka Memorial Teaching Hospital No 4 Medical University of Lodz Poland
Abstract
Angelman syndrome is a genetically inherited syndrome with severe retardation of psychomotor development and speech
disturbances usually accompanied by epilepsy typical dysmorphic features and some skeletal symptoms The aim of the
current report is to present new skeletal symptoms which may occur in the course of AS based on a case report of an 8-
year-old girl with confirmed 15q1112 microdeletion and recurrent low-trauma bone fractures According to our knowledge it
is the first report of such skeletal symptoms in patient with a diagnosis of AS
Title Role of the ubiquitin ligase E6APUBE3A in controlling levels of the synaptic protein Arc
Journal Proc Natl Acad Sci U S A
Authors Kuumlhnle S Mothes B Matentzoglu K Scheffner M
Department of Biology and Konstanz Research School Chemical Biology University of Konstanz 78457 Konstanz
Germany
Abstract
Inactivation of the ubiquitin ligase E6 associated protein (E6AP) encoded by the UBE3A gene has been associated with
development of the Angelman syndrome Recently it was reported that in mice loss of E6AP expression results in
increased levels of the synaptic protein Arc and a concomitant impaired synaptic function providing an explanation for
some phenotypic features of Angelman syndrome patients Accordingly E6AP has been shown to negatively regulate
activity-regulated cytoskeleton-associated protein (Arc) and it has been suggested that E6AP targets Arc for ubiquitination
and degradation In our study we provide evidence that Arc is not a direct substrate for E6AP and binds only weakly to
E6AP if at all Furthermore we show that down-regulation of E6AP expression stimulates estradiol-induced transcription
of the Arc gene Thus we propose that Arc protein levels are controlled by E6AP at the transcriptional rather than at the
posttranslational level
Title Proteomic profiling in Drosophila reveals potential Dube3a regulation of the actin cytoskeleton and neuronal
homeostasis
Journal PLoS One
Authors Jensen L Farook MF Reiter LT
Department of Neurology University of Tennessee Health Science Center Memphis Tennessee United States of
America 9
Abstract
The molecular defects associated with Angelman syndrome (AS) and 15q duplication autism are directly correlated to
expression levels of the E3 ubiquitin ligase protein UBE3A Here we used Drosophila melanogaster to screen for the targets
of this ubiquitin ligase under conditions of both decreased (as in AS) or increased (as in dup(15)) levels of the fly Dube3a or
human UBE3A proteins Using liquid phase isoelectric focusing of proteins from whole fly head extracts we identified a total of
50 proteins that show changes in protein and in some cases transcriptional levels when Dube3a fluctuates We analyzed
head extracts from cytoplasmic nuclear and membrane fractions for Dube3a regulated proteins Our results indicate that
Dube3a is involved in the regulation of cellular functions related to ATP synthesismetabolism actin cytoskeletal integrity
both catabolism and carbohydrate metabolism as well as nervous system development and function Sixty-two percent of the
proteins were gt50 identical to homologous human proteins and 8 have previously be shown to be ubiquitinated in the fly
nervous system Eight proteins may be regulated by Dube3a at the transcript level through the transcriptional co-activation
function of Dube3a We investigated one autism-associated protein ATPα and found that it can be ubiquitinated in a Dube3a
dependent manner We also found that Dube3a mutants have significantly less filamentous actin than wild type larvae
consistent with the identification of actin targets regulated by Dube3a The identification of UBE3A targets is the first step in
unraveling the molecular etiology of AS and duplication 15q autism
Title Discrimination training reduces high rate social approach behaviors in Angelman syndrome proof of principle
Journal Res Dev Disabil
Authors Heald M Allen D Villa D Oliver C
Cerebra Centre for Neurodevelopmental Disorders School of Psychology University of Birmingham Edgbaston B15 2TT
UK mxo988bhamacuk
Abstract
This proof of principle study was designed to evaluate whether excessively high rates of social approach behaviors in children
with Angelman syndrome (AS) can be modified using a multiple schedule design Four children with AS were exposed to a
multiple schedule arrangement in which social reinforcement and extinction cued using a novel stimulus were alternated
Twenty-five to 35 discrimination training sessions were conducted and levels of approach behaviors were measured before
and after the discrimination training for two children All four participants evidenced discrimination between conditions of
reinforcement and extinction after 16-20 teaching sessions as indicated by lower rates of social approach behaviors in the
presence of the S(Δ) for extinction Reversal effects for the two children for whom this design was implemented were evident
The results demonstrate that after repeated training the use of a novel stimulus can serve as a cue for children with AS to
discriminate adult availability This is a potentially effective component of a broader intervention strategy but highlights the
need for sustained teaching procedures within this population
Title The Angelman syndrome protein Ube3aE6AP is required for Golgi acidification and surface protein sialylation
Journal J Neurosci
Authors Condon KH Ho J Robinson CG Hanus C Ehlers MD
Department of Neurobiology Duke University Medical Center Durham North Carolina 27710 USA
Abstract
Angelman syndrome (AS) is a severe disorder of postnatal brain development caused by neuron-specific loss of the HECT
(homologous to E6AP carboxy terminus) domain E3 ubiquitin ligase Ube3aE6AP The cellular role of Ube3a remains
enigmatic despite recent descriptions of synaptic and behavioral deficits in AS mouse models Although neuron-specific
imprinting is thought to limit the disease to the brain Ube3a is expressed ubiquitously suggesting a broader role in cellular
function In the current study we demonstrate a profound structural disruption and cisternal swelling of the Golgi apparatus
(GA) in the cortex of AS (UBE3A(m-p+)) mice In Ube3a knockdown cell lines and UBE3A(m-p+) cortical neurons the GA is
severely under-acidified leading to osmotic swelling Both in vitro and in vivo the loss of Ube3a and corresponding elevated
pH of the GA is associated with a marked reduction in protein sialylation a process highly dependent on intralumenal Golgi
pH Altered ion homeostasis of the GA may provide a common cellular pathophysiology underlying the diverse plasticity and
neurodevelopmental deficits associated with AS
10
A Grandmother finds a solution for her granddaughter and all of our kids with Angelman Syndrome
By Lois Carroll
When my growing granddaughter who has AS couldnt be fitted with large enough bibs I took out my sewing machine to
solve the problem I showed the resulting smock to friends and my project Sophies Smocks named after my granddaughter
was born so that many kids with AS could have a free smock
I buy new and gently used turtlenecks and trim Supporters donate their time to help and their money for postage and
materials to keep the project ongoing All the smocks are FREE for individuals with AS I have child size SMALL to adult XL
They are available to others for a donation to cover at least the postage to keep the project going
To get a smock all you have to do is ask by emailing smockscoxnet Give me your childs shirt size plus a name and
mailing address including zip Ill send one as soon as I can Theres no catch and no obligation I mail around the world and
free means free You can check it out at my website httploiscarrollbookscomindexSShtm
Thank you
Grandma Lois
Sophies Smocks
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
Clinical Trial of Low Glycemic Index Treatment proves effective for reducing seizures by 80 ndash 90
Dr Thibert and Dr Elizabeth Thiele (both are members of the Scientific Advisory board for the Angelman Syndrome
Foundation) were able to launch a clinical study to determine the efficacy of the Low Glycemic Index Treatment in
reducing seizures in individuals with Angelman Syndrome In July 2012 the results were in and published in
Epilepsia and in the Angelman Syndrome Foundation newsletter
Epilepsia link httponlinelibrarywileycomdoi101111j1528-1167201203537xabstract
PubMed link httpwwwncbinlmnihgovpubmed22779920
You can read my interview with Dr Thibert on my blog wwwMeetTheFamiliesofASblogspotcom
11
NEW DEVELOPMENTS AT THE ANGELMAN SYNDROME FOUNDATION
Angelman Syndrome Foundation Invests $125 Million in AS ResearchDue to your support the Angelman Syndrome Foundation is able to award more than $125 million in grants for AS research this current grant cycle This yearrsquos funded research will contribute to all future AS preclinical and clinical trials helping move AS research closer to developing treatments for individuals with AS while furthering the research communityrsquos understanding of the complexities of AS Thanks to you this yearrsquos funded research will seek to define the optimal window for potential treatment further understanding of varying UBE3A gene mutations and deletions and determine if a current FDA-approved drug is a viable treatment in an AS mouse model
ASF Biennial Conference Your Ultimate AS ResourceThe Angelman Syndrome Foundationrsquos 2013 Biennial Conference Championing Progress will be held July 23-26 at the Walt Disney World Swan amp Dolphin resort in Orlando Florida As a central resource for your familyrsquos unique needs and those of your loved one with AS the Conference addresses all aspects of living with AS and provides the opportunity to network and learn from a variety of experts and keynote speakers attend breakout sessions and participate in collaborative opportunities with other families
iPads For ASTo help individuals with AS overcome some of the challenges associated with communication the Angelman Syndrome Foundation has launched the iPads For AS program which provides Applereg iPadsreg for up to 100 individuals who qualify for the program Requirements for
participation include working with a speech pathologist and conducting quarterly assessments among others
ASF Honors Your InvestmentDue to your support and that of more than 7000 volunteers during the last 21 years the Angelman Syndrome Foundation has been able to
bull Providemorethan250000individuals with information support and connections to resources
bull Raisemorethan$125million to fund research and provide direct support to individuals affected by AS
bull Grantmorethan$58millionto more than 70 research endeavors to support a diverse set of research projects
bull Holdmorethan186individualwalks in 42 cities across the country that have been attended by more than 52000 individuals
The Angelman Syndrome Foundation is honored to serve as a resource to the AS community and welcomes any individual touched by AS to contact the organization
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Thank you for your supportThe 2013 Angelman Syndrome Foundation National Walk boasted record participation with more than 11700 individuals who to date have raised more than $1 million towards the $11 million fundraising goal Fundraising continues through September 30 The Angelman Syndrome Foundation is deeply grateful for the time energy and support that you and the AS community invested to raise these funds that provide direct support to individuals with AS and their families through programs resources and networking opportunities and that fund research that will help lead to a cure for AS
The Power of Cooking
Angelman syndrome ketogenic diets and LGIT
By Sybille Kraft Bellamy
One of the best ways to naturally help our angels is by giving them a
nutritious healthy diet
Our angels are fragile and very sensitive to their environment
Little things minor changes can trigger dramatic consequences
Each child is unique each parent is special
We have to rediscover the power of food
Therapeutic diets like ketogenic diets have been used for years to help
control epilepsy Today the LGIT (Low Glycemic Index Treatment) is
one of the easiest diets to give to our angels It is one of the weapons
we can use to protect them from the multiple risks they face Seizures
are a major and common risk for our angels
The LGIT helps balance and reinforce the energy they need to keep
them happy healthy and at full cognitive capability
The modification of your childrsquos diet can be done one step at a time
Small changes can lead to big improvements
This is a unique opportunity for you MOM and DAD to directly affect
your childrsquos health and quality of life
There is nothing more terrible than to feel helpless when your child is
sick Our Angelrsquos challenges are numerous and it is proven that a
special diet can help avoid many of their complications
The medical community is embracing this form of treatment to remedy
many disorders worldwide The Angelman community is hard at work to
bring awareness of this treatment to our families Resources such as
ldquoAngleman Syndrome Dietrdquo on Facebook and The Charlie Foundation
can provide information and support to help you start taking control of
your childrsquos diet health and wellbeing
LGIT Testimonial - Jay and Joel are my 26 year old identical twin sons who both have Angelman Syndrome
Seizures have always been a huge problem for them at one point they were both having over 250 grandmals a day
and spent almost a year in the hospital trying to get them controlled Doctors at that time only gave them a 1
chance to survive Now at age 26 Joelrsquos seizures are well controlled with meds but Jayrsquos have never been controlled
In March we started the LGIT after talking to his Dr and getting a lot of support and advice from Sybille Since
starting the diet we have seen a huge decrease in the amount and severity of Jayrsquos seizures Before the diet he
would have 10-20 seizures a week and need a rescue med 3x a week and now he may have only 4-5 seizures a
month Prior to starting the LGIT Jayrsquos seizures were very intense grandmals where he would stop breathing and turn
blue each time and he would have several in a row we have not seen him turn blue or stop breathing since the diet I
believe the diet is helping him tremendously and he is much more alert and vocal Their neurologist has begun
weaning Joel off of one of his seizure meds because of the side effects and we have now started Joel on the LGIT
diet also and he too is acting more alert and vocal (and no seizures) - Lisa Truax-Murphy
Recipes can be found on
Facebookcomangelmansyndromediet
13
LGIT Testimonial - Anna had a terrible start She could not drink and because of this she was hospitalized 3 weeks
after her birth They soon discovered she had epilepsy and here in The Netherlands I understood almost all babies with
epilepsy get Phenobarbital Because I was not satisfied with the care Anna received we decided to move to another
hospital So almost 6 months later the new neurologist advised us to stop with Phenobarbital and start with Keppra
And it was a good choice When Anna was 1 year old she finally got diagnosed Angelman Syndrome With Keppra
we succeeded to keep her seizure free for almost 2 years When the seizures came back we started with Rivotril
(Clonazepam) in addition to the Keppra and it helped her for 2 years but then the seizures came back again Her
neurologist advised us to start with a third drug but we didnrsquot want to give her more medicine At the same time I read
the research article about the LGIT and I got enthusiastic about it I had to give it a try Annarsquos neurologist was a bit
suspicious but I insisted so he helped us The first month was terrible Anna got more seizures and was very tired I was
so afraid I was only complicating her life instead of helping her I was so down that I just wanted to stop the diet But
after a long phone call with Sybille Kraft I decided to continue the diet for just a few more weeks And Irsquom so happy we
did this A week later Annarsquos absences were gone She started to walk again became more alert And the best thing
of all was that for the first time in her life she slept for 6 hours without waking This was so amazing
The LGIT made a big change in Annarsquos life She is able to concentrate shersquos more active and sleeps better Its just
amazing At first the diet appears very complicated This is because we are so used to eating a lot of bread sugar and
processed food If you just use fresh vegetables meat eggs and fish you can easily cook something very healthy tasty
and LGIT When travelling we always take our own food with us for Anna and there is always something on the menu in
a restaurant that she can eat
-Violeta Giurgi
Summer Time is a great time to find your local farmerrsquos market and buy fresh fruits amp veggies
14
Angels in Action
Angels in Action is where you will read about the inspiring stories of the success in gained skills and abilities by our loved ones with
Angelman Syndrome Written by the families we join in celebrating the abilities no matter how big or small We believe it is
important to inspire everyone with these real stories of our endearingly termed lsquoAngels in Actionrsquo
Possibilities abound when we have a vision By Karen VanPuyenbroeck of Illinois
Angel Mom to Krista 10 years old AS UPD
When I was asked by our Editor In Chief Lizzie Sordia to write a piece about Kristas abilities for this section I asked myself what
were my burning questions about how to develop abilities in my daughter and for me I just really wanted to figure out how I could
teach her to speak I knew that there had to be a way and I obsessed on this topic for hours days months and yes even years It
took me quite a while to find an angel with functional speech but I found him and once I found him I knew that it was possible for my
angel to speak too I wanted to know how it was possible And the big lesson that I learned from Richies mom Dawn was that they
first believed that he could develop this ability and so did his therapists From that point on I developed my own belief and eliminated
therapists who did not support my vision for my daughter of verbal communication and unfortunately for me this meant that Krista
received no speech therapy for a time and mom became her therapist with the help of a program called NACD Through NACD I
learned that an unskilled parent who was willing to learn how to implement therapy who would spend many hours per week
implementing therapy and who could maintain the vision for their child was preferable to a highly skilled professional therapist who
could only spend an hour per week with my child and who did not share my vision
Today at age 10 Krista speaks over a hundred words and has quite a few phrases her speech has been referred to as functional
by her school and by the last two speech therapists who have evaluated her Kristas favorite and most consistent phrase over the
years has been I love you and if those were the only words that I had ever heard spoken from the lips of my angel all of the energy
that we have put into her healing program would have been worth it and I would do hundreds of times over again
Heres how we did it
1 We cultivated belief I have to credit my husband Steve for this This angel Daddy always knew that his girl was A-ok And to my
kids Nana who said simply if you want her to speak we will teach her to speak Because Nana has adult twin boys with autism as
a result of Urea Cycle Disorder I knew that she knew exactly what she was talking about and so I believed her Kristas older
siblings played an essential role by always speaking to her as if she could speak back
2 I tossed out any lsquoDebbie Downerrsquo therapists or health care providers in her life at times this meant that she did not receive
certain therapies at all but again I had come to understand that it was better that I work with her with all of my love support and
belief than it was for a professional who didnt see things that way
3 I only shared my vision for my daughter with people who believed in her ability well meaning friends and relatives may want to
help you accept your childs limitations I finally came to understand that this was their position and realized that pushing the issue
was only baiting them into an oh you poor dear its sad that you have not come to terms with your childs disability type of lecture
4 Gluten and Casein free diet baby Thanks to a miraculous accident I bought the wrong Autism book at Barnes and Noble called
Unraveling The Mystery of Autism by author Karyn Seroussi This started us on an amazing journey that lead us to the wonderful
discovery that by removing these offending proteins my daughters health would improve drastically and as a result of her improved
health status Krista gained many wonderful skills much too many to mention here but improved speech was definitely a biggie
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
15
5 At 5 orsquoclock sharp every morning Krista liked to crawl out of my bed and venture off to her play room
where shed play with blocks and just adored taking things apart During this play time I would get down
on the floor with her grab a block put it near my mouth and just repeatedly say Mama The toy was
used to bring her attention to my mouth a technique that I learned while researching the Son-Rise
program This developed into me singing Mama over and over again and pretty soon my girl was
saying Mama so Id check in with her daily to make sure that she still had Mama down pat and I then
moved on to Dada and Baba etc Some words came very easily and some did not but I remained
grateful for every word or approximation that this angel girl could produce never giving a second
thought to the ones that were really tough for her Always referring to her speech as developing
6 Through Glenn Domans book What to do About Your Brain Injured Child (Brain injury in this context
referring to any condition affecting your childs cognitive ability) I learned that I should listen out for
different sounds that she would make for example many babies will babble mmm You catch the child
saying mmm and you sit him down and say I have noticed that you can say mmm Now we will take
that mmm sound and it will mean Mama In this scenario every time you hear the child babble
mmm you will quickly reinforce this by saying something like You said Mama I love it when you say
Mama You called me and I came My Krista is very high intensity and responds very well to intense
animated and even loud praise so this method has proven very effective for us
7 Good probiotics to clear up yeast in the gut and to help to heal Kristas gut was essential
8 Krista gained even more speech while participating in the Angelman Syndrome Supplement Trial
9 We used MB12 shots with much success in Krista learning to string together longer sentences
10 Lastly in recent months Lizzie talked me into supplementing with a fish oil that is specifically
formulated to aid in speech development We saw great results I learned quite a bit about therapeutic
dosing of fish oil at Integrative Nutrition where Dr Sears of The Zone Diet was a guest lecturer and huge
advocate for this approach From this I learned that Krista needed about three times the amount of fish
oil than what is recommended for general health in order to be able to see an increase in ability for
speech
My determination for Krista to learn to speak started when she was a mere baby she is now 10 and Im
still learning and remaining open to safe and effective ways of helping her in the area of speech as well
as many other areas of her life that will help her to become an independent young lady
If you are reading this and feeling a bit bummed out that you were not as convinced about the speech
thing as I was or you feel like oh had I only been that determined maybe I would be hearing my sweet
Angels voice Let me say this DO NOT feel that way There was something that seemed out of
reach for your Angel that you were able to help him or her accomplish that I may have not been able to
help my daughter to accomplish We only have so much energy to expend in a day I chose to expend it
on speech Another parent might be more consumed by helping their child to gain the ability to walk
independently maybe you always envisioned your angel riding a bike or reading whatever it is I hope
our story encourages you to cultivate a belief and unwavering faith that will lead to the achievement of
yours and more importantly your Angels dreams
Written by
Karen VanPuyenbroeck
Angelman Today Magazine
Associate Editor
KarenAngelmantodayGmailcom
Karen is a certified Health Coach providing Nutrition Counseling services to the special needs
community with a focus on Angelman syndrome To learn more about her services visit her website at wwwAngelFoodsbyKarencom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
16
17
Social Security Disability Benefits and Angelman Syndrome Angelman Syndrome (AS) is a complex genetic disorder characterized by developmental delays and neurological
problems Children with AS often require around-the-clock care for their entire lives
Parents of children who have AS often dedicate extra time energy and even money to provide a high quality of life for
their child Assistive technology supportive care and specialty medical treatments rack up expenses quickly Parents
may even find it necessary to take time away from work to be with their child The resulting loss of income and lack of
medical insurances can be financially devastating
If your child has been diagnosed with Angelman Syndrome he or she may qualify for financial assistance in the form of
Social Security Disability (SSD) benefits SSD payments can be used to cover your childrsquos expensesmdashincluding anything
from food to supportive services to medical bills
The following article will give you a basic overview of the options available to your family and will provide you with the
information needed to begin the SSD application process
Compassionate Allowances and Angelman Syndrome
Typically the SSD application process can take months or even years to complete Fortunately the SSA recognizes that
individuals with severely disabling conditions may not be able to wait that long to receive disability benefits For this
reason the SSA offers Compassionate Allowances (CAL) processing to individuals with certain disabilities Applicants
who have been diagnosed with conditions covered by the CAL program can receive SSD benefits in as little as 10 days
Angelman Syndrome is one of approximately 200 conditions that qualify for CAL processing You will not need to fill out
additional paperwork or request to receive CAL processing The SSA will evaluate your childrsquos claim and expedite it
accordingly
Social Security Disability Insurance and Supplemental Security Income
The SSA offers disability benefits through two separate programsmdashSSDI and SSI Each of these programs has very
specific technical eligibility requirements
SSDI stands for Social Security Disability Insurance and provides benefits to disabled workers Eligibility for SSDI is
dependent on an applicantrsquos employment history as well as the amount of taxes he or she has paid into the system
Children and young adults donrsquot often qualify for SSDI on their own record because they havenrsquot had the chance to work
and pay into the program
It is important to note that if the childrsquos parent is qualified for SSDI or retirement benefits the child may qualify for
dependent benefits based on a parent or guardianrsquos earnings record If your child is technically an adult but was
diagnosed with Angelman Syndrome before age 22 he or she is considered to be an adult child Adult children may also
qualify for a childrsquos dependent benefits
SSI stands for Supplemental Security Income SSI is a needs-based program that provides financial assistance to elderly
or disabled individuals who earn very little income Eligibility for SSI is based on financial need not employment history
To qualify applicants cannot exceed specific financial limitations set in place by the SSA
In the case of a child a portion of his or her parentrsquos income will be ldquodeemedrdquo This means that the SSA will evaluate the
deemed income to determine whether or not the child meets the SSI financial eligibility requirements Deeming occurs
for children who are under the age of 18 unmarried and still live with a parent or guardian Parentsrsquo earned income
unearned income and financial resources will all be taken into consideration
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
18
Income and resources that will not be deemed includes the following
Welfare payments
Public Income Maintenance (PIM) including Temporary Assistance to Needy Families (TANF) and VA pension for
veterans
Food stamps
Disaster assistance
Foster care payments
Tax refunds on real property (property that includes land andor buildings)
Home grown produce used for personal consumption
The SSA also makes the following allowances for living expensesmdashmeaning that the following will be deducted from the
amount of income deemed to your child
$365 a month for each additional child that you support
$710 a month for a single parent or $1066 for two parents
It is important to note that this amount will not be subtracted for parents or children who already receive public assistance
Once your child turns 18 SSI payments will be based on his or her own earnings record
Medical Requirements
In addition to the previously mentioned technical requirements your child must also meet very specific medical
requirements to qualify for disability benefits The requirements can be found in a publication known as the ldquoblue bookrdquo
The SSArsquos blue book contains listings for potentially disabling conditions as well as the specific medical criteria an
applicant must meet to qualify under each condition
The SSA has separate listings for adults and children The specific medical requirement that your child will have to meet is
dependent on his or her age Your child will have to meet one or more of the following blue book listings to qualify for
disability benefits
Section 1205mdashMental Retardation (Adult)
Section 11205 ndash Mental retardation (Child)
Section 11008 B ndash Catastrophic Congenital Disorder (Child)
You can access these specific listings on the SSArsquos website
Preparing for the Social Security Disability Application Process
Even though your child qualifies for the Compassionate Allowances program you will still have to provide thorough medical
evidence that proves the extent of your childrsquos condition Medical evidence should include records of your childrsquos diagnosis
treatments response to treatments hospitalization records and medical test results You should also collect statements
from professional adults that interact with your child on a daily basis This can include doctors teachers and therapists
These statements should provide details about your childrsquos limitations and abilities
The SSA may also ask for evidence of the following
Your childrsquos inability to perform age appropriate functions
IQ test results showing a marked developmental deficit based on age
Other developmental delays and impairments in physical and mental functioning again based on age
You should collect these documents prior to beginning the application process to prevent any delays in the processing of
your childrsquos claim
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
19
Starting Your Application
The SSD application procedures will differ depending on whether you are filing for SSI benefits or SSDI dependent
benefits
If you are interested in learning more about dependent benefits you should call the SSArsquos main phone line (1-800-
772-1213) or contact the representative who handles the eligible parentrsquos claim
To apply for SSI benefits on behalf of a child you will be asked to complete two forms the ldquoApplication for
Supplemental Security Incomerdquo and the ldquoChild Disability Reportrdquo Currently only the child disability report can be
completed online You will have to schedule an appointment with your local Social Security office to complete the
application for SSI
If you are applying for SSI on behalf of an adult you will have to complete the same process with an ldquoAdult
Disability Reportrdquo rather than a child disability report
It is important that you realize how overwhelming and complicated the SSD application process may become In
fact many initial applications are denied and require the applicant to request an appeal hearing If your childrsquos
application is denied do not give up The key to receiving disability benefits it to be persistent in your efforts
For more information about applying for disability benefits visit Social Security Disability Help (wwwdisability-
benefits-helporg) or contact Molly Clarke at macssd-helporg
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
20
READ MORE ABOUT OUR ACTIVITIES AND BROWSE THE
INFORMATION PAGES HERE
httpangelmannetworkwordpresscom
Our successful International Angelman Day celebrations
held across the country
httpangelmannetworkwordpresscomlearn-
aboutwhat-is-the-angelman-network
For up to date info on Therapies
httpangelmannetworkwordpresscomtherapy-for-as
For information and ideas regarding Communication
httpangelmannetworkwordpresscomeducation-and-
communication
For general information on Epilepsy in AS
httpangelmannetworkwordpresscomangelman-
syndromeangelman-syndrome-epilepsy
The Angelman Network was
established in New Zealand as a
Charitable Trust in 2011 (CC46746)
We seek to connect and support
people impacted by Angelman
Syndrome
++++++++++++++
We are New Zealandrsquos only organisation
solely dedicated to promoting
awareness for Angelman Syndrome
and to actively promote and support
the progress being made with world-
wide research on AS
++++++++++++++
Our Information Pages are
regularly updated to include
newimproved ideas and links as
these become available
+++++++++++++++
Our aim is to offer an active and
accurate website which will become
a helpful resource for families and
provide useful and reliable information
for medical and educational
professionals both in
NZ and around the world
WE ARE ON FACEBOOK AT
Non-profit page
httpswwwfacebookcomtheangelmann
etwork
Informal group
httpswwwfacebookcomgroups10468
6089609200
Our ACTION ANGEL TEAM is an informal fundraising group who regularly raise funds and awareness for Angelman Syndrome by running in local races wearing their signature white wings
22
Shea teaches himself to read By Carol Pulver of Florida
Angel Mom to Shea 22 years old AS Del +
Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery
followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done
shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful
Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding
and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a
speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him
to sustain a suck for more than a few seconds
At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory
issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the
milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was
just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately
schedule a neurology consultation get an EEG and do blood work to check for abnormalities
Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family
pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with
the neurologist and the blood work we received some answers
I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old
The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He
told us that our son would never be able to walk to talk or to function as our other children and that we might as well
ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I
sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless
We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do
everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but
the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear
I want to share some of the things wersquove learned along this journey
1 Always trust your intuition No one knows your Angel(s) as well as you do
2 Never put a limit on your Angelrsquos abilities
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
23
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
Letter From The Editor
The Motivation
It all began with a thought a series of events like International Angelman Day and meeting other passionate parents After
receiving my sonrsquos diagnosis I immediately developed this strong desire to learn as much as I could about his genetic
condition Since there is currently no lsquotreatmentrsquo available I asked myself ldquowhat can I do to help my son todayrdquo
As I learned of the advancements in research and the wonderful work that the foundations do across the globe I was filled
with gratitude and hope But my time is limited as yours is I wondered how I could stay current with this information
Inspired by IAD I sat down to write a blog post on wwwMeetTheFamaliesofASblogspotcom and the words never came
Instead ideas of a simple resource that can give us information in the quickest way possible directly in the palm of our
hands An online magazine As I talked with Angel Moms they thought it was perfect and had the same idea It felt as
though our conversations on how we are helping our kids was leading up to this
My name is Lizzie Sordia and my son Nathan was diagnosed with Angelman Syndrome shortly after his second birthday
Our story starts out very similar to many of yours It was July to be exact Itrsquos funny how I find myself in this position just 3
years after his diagnosis But I guess this is what happens when you light the fire of a Mother Lion Donrsquot tell me what my
son canrsquot do he will show you what he can do In our journey with Nathan the hardest times were before we received his
diagnosis I knew immediately after birth something wasnrsquot right He was transported to the NICU (Neonatal Intensive Care
Unit) within 24 hours of being born After seizures started we practically lived in the hospital He was so sick and had
uncontrollable seizures that almost took him from us Doctors and specialist didnrsquot know what was wrong Fragile X tests
and others were inconclusive We faced our darkest time alone with the unknown I did not yet know of this wonderful and
helpful community that was waiting for me
Having a sick child and unanswered questions was the most helpless feeling for me and my family and I donrsquot want anyone
to feel the way we did no matter where they are on this planet It is my personal goal to reach them and provide them with
comfort or information which ever they are looking for
Nathan almost received a diagnosis of Autism thatrsquos what they were whispering around the hospital but no one wanted to
officially diagnose him He had many of the same symptoms Thanks to those whispers it lead me to find the brightest
people who knew how to help Nathan and make a difference in his life in a very short time I can now say Nathan is healthy
he walks has a few words says ldquoMamardquo everyday (melts my heart) a few signs sleeps through the night and is making
gains every day
Like most children with AS Nathan (del+) did not start off sleeping very well so since I was up I put that time to good use
I researched and reached out to AS families and learned from their experiences I am going to share my team of experts
with you as well as many others I have met along the way The best news is that there are things we can do for our kids
TODAY Many of you are doing them already
Now more than any other time in history has it been easier to unite people on a global level We are working on translating
this magazine in every language so we can all communicate freely and quickly I want to bring you the brightest minds in the
field of AS including researchers and practitioners who treat our children everyday Doctors that practice functional medicine
and Bio-Medical treatments All of these efforts will equal real suggestions that we can apply and see what will work for our
individual children TODAY Having options is important because there is a lot more going on with many of our kids then just
chromosome 15 and some doctors are missing it the way they missed the diagnosis or they blame AS for some symptomshellip
We will share with you experiences from families everywhere There is nothing more powerful than an experience
Anyone who would like to share their story CAN and you (the reader) can take what you would like from it and use it to help
you on your journey (or not)
This is our life our journey to learn and grow Itrsquos going to be wonderful terrible filled with love hugs and tears We are in it
together to help
Sincerely
Lizzie Sordia
Editor-in-Chief 2
July 2013 Premier Online Edition
Cover Credits
Kaylee Fingold
AS UBE3A
Photographed by
Wes Bonnefin Photography
wwwbonnefinstudioscom
Angels in
Action
Social
Security
Benefits
18 This article will give
you a basic overview of
the options that may be
available for your family
and will provide you with
the information needed to
begin the Social Security application process
6 Understanding Genetic
Classes of Angelman
Syndrome
Charles Williams MD is a
Professor of Pediatrics and
Genetics Division of
Genetics and Metabolism
Department of Pediatrics
University of Florida
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
GF
27 Gluten Free
Living Not just a fad diet find
out its many benefits for
those with Angelman
Syndrome Find out some
of the symptoms that go
unnoticed
15 Angels in Action
Inspiring stories from
families celebrating the
abilities of our children
with Angelman Syndrome
endearing called
ldquoAngelsrdquo
In Every Issue
5 Contributors
AS Research
9 Latest research by Ed Weeber
10 LGIT study by Dr Thibert and Dr Elizabeth Thiele
Low Glycemic Index Treatment proves
Effective at reducing seizures
41 Minocycline update by FAST
Newly Diagnosed Families
6 Understanding Genetic Classes
7 lsquoWelcome to Hollandrsquo by Emily Perl Kingsley
8 Words of Wisdom
Quotes from parents
15 Angels in Action - Krista
23 Angels in Action ndash Shea
29 Angels in Action - Carter
Features
2 Letter from the Editor
Inspiration for creating Angelman Today
4 Our Journey
18 Social Security Benefits
32 RDI Therapy - Relationship Development
Intervention
Angelman Syndrome Foundations
12 Angelman Syndrome Foundation US
13 Angelman Networks New Zealand
21 Angelman Syndrome Ireland
25 Casa Angelman Argentina
41 Foundation for Angelman Syndrome Therapeutics
3
Together we are all on a journey A journey that is the same and different
There is no right way or wrong We span across the globe
There is so much we can learn from one another We can share our experiences
of laughter joy failure and triumph Together our global community
will become connected like never before And we will make great progress Improve the lives of our families
And maybehellip just maybehellip Take part in the ultimate solution
In finding the cure
~Lizzie Sordia Editor in Chief
Our Journey Begins Here
4
Contributors
Karen VanPuyenbroek Associate Editor
Isabel Orellana
Marc Bissonnette
Sybille Kraft
Bellamy
A Big Thank You to our contributors for helping to make this magazine a reality Your talent passion and love for our kids is what Angelman Today is all about -Lizzie Sordia Editor ndash in - Chief
Angelman Today
Edwin Weeber PhD Professor Dept of Molecular Pharmacology and Physiology Chief Scientific Officer USF Health Byrd Alzheimers Institute Director Neurobiology of Learning and Memory Laboratory University of South Florida Healths
Morsani College of Medicine
Charles A Williams MD Professor of Pediatrics and
Genetics Division of Genetics and Metabolism Department
of Pediatrics University of Florida
5
Conducting blood testing to diagnose
Angelman syndrome (AS) can be a
complicated matter Here I summarize the
different genetic causes of AS and provide
general guidelines about how to use genetic
tests to confirm the diagnosis of AS First let
us look at the genetic mechanisms that cause
AS
A chromosome 15 pair is illustrated for each class depicted but the other chromosomes are not shown The P
indicates the maternally-derived chromosome and the M indicates the maternally-derived one The shaded
chromosomes have a paternal pattern of gene functioning while the unshaded chromosomes have a maternal
pattern AS can be caused by either a large chromosome deletion (70 of the time) a disruptive mutations in the
UBE3A gene inherited from the mother (indicated by the X) inheritance from the father of 2 normal number 15
chromosomes (eg paternal uniparental disomy [UPD]) or an imprinting defect (ID) occurring when the
chromosome 15 inherited from the mother has the paternal pattern of gene functioning because of a problem in
the imprinting center (denoted by the small open circle)
In addition to these mechanisms a clinical diagnosis of AS may be given even though the genetic testing is
normal The percentages indicate how common each mechanism occurs
How do we use genetic testing and what is the sequence of testing There are many pathways to diagnosis for
families undergoing testing for AS but the most common testing pathway is summarized here
Understanding Genetic Classes of Angelman Syndrome
Dr Charles Williams
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
6
Welcome To Holland
Welcome To Holland
by
Emily Perl Kingsley
copy1987 by Emily Perl Kingsley All rights reserved Reprinted with permission of the author
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not
shared that unique experience to understand it to imagine how it would feel Its like this
When youre going to have a baby its like planning a fabulous vacation trip - to Italy You buy a bunch of guide
books and make your wonderful plans The Coliseum The Michelangelo David The gondolas in Venice You may
learn some handy phrases in Italian Its all very exciting
After months of eager anticipation the day finally arrives You pack your bags and off you go Several hours later
the plane lands The flight attendant comes in and says Welcome to Holland
Holland you say What do you mean Holland I signed up for Italy Im supposed to be in Italy All my life Ive
dreamed of going to Italy
But theres been a change in the flight plan Theyve landed in Holland and there you must stay
The important thing is that they havent taken you to a horrible disgusting filthy place full of pestilence famine and
disease Its just a different place
So you must go out and buy new guide books And you must learn a whole new language And you will meet a
whole new group of people you would never have met
Itrsquos just a different place Its slower-paced than Italy less flashy than Italy But after youve been there for a while
and you catch your breath you look around and you begin to notice that Holland has windmillsand Holland has
tulips Holland even has Rembrandts
But everyone you know is busy coming and going from Italy and theyre all bragging about what a wonderful time
they had there And for the rest of your life you will say Yes thats where I was supposed to go Thats what I had
planned
And the pain of that will never ever ever ever go away because the loss of that dream is a very very significant
loss
But if you spend your life mourning the fact that you didnt get to Italy you may never be free to enjoy the very
special the very lovely things about Holland
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
7
ldquoThe words of advice I offer newly diagnosed families today starts out a little different than it did a few years ago In the past I might have
suggested parents not jump into researching the syndrome and to ignore the majority of what has been written by experts Today
there is a multitude of valuable information available and it is written by the true experts the parents of the Angelman Syndrome
Community Do your research Read all you can Join the online support groups and ask questions Find local families and meet their
families You are going to see a wide variety of personalities abilities opinions and you are going to feel right at home
Here are a few tried and true words of advice that I still share because they have stood the test of time
1 Never underestimate your child and do not base your expectations on the evaluations of others
2 Your child is your child and unless you are neglecting or endangering your child that does not change because of a diagnosis There
are many people out there who think they know best but a parents instinct and the intimate knowledge they have of their child serves as
the best indicator of what is right and of what needs to be done
3 No matter what the numbers say your child is still one of a kind and always will be A diagnosis is a way of helping you help your child
but it does not define your child or your family Your child has a syndrome The syndrome does not have your child
4 Be a family first Try not to let a diagnosis consume you 247 therapy is not healthy for anyone Love and play are the best gifts you
can give your child and are the best stimulants for growth and development
5 Take care of yourself Take care of your spouse and take care of your other children It is easy to focus on your child with a diagnosis
and not realize you have let other things go We have all tried to be the strong one and prove we can do this but I assure you the earlier
you learn to allow others to help out the easier it will be
6 There will be good days and bad days Your emotions will betray you when you least expect it You will experience the highest and
lowest of emotions and sometimes on the same day You will sweat the small stuff and you will celebrate the small stuff You have
joined a community that will be here for all of this and we will understandrdquo
Brenda Dixon Mississippi
Jonathan - 33yrs AS Del+
ldquoNever accept a doctor telling you that your child lsquowont be able torsquo
Never under estimate you childs potential--our kids love to learn Always
have faith in your gut instinctsMomma (or Daddy) usually knows best
Look forward with faith in the advances and treatments that are on the
horizon but as you struggle (from time to time) in your daily life with an
Angel (and there will be struggles) know that you are not alone--we are
all in this together Dont be afraid to ask questions Support tears
cheers and hugs are just a phone call or Facebook post away Take time
each day to recognize the blessings in your life Enjoy your Angel hugsrdquo
Carol Pulver Florida
Shea Pulver - 22yrs AS Del+
ldquoDont allow anyone even yourself to see a diagnosis instead of a child A child needs a parent more than a therapist or researcher
Yes we need to wear several hats to be good parents - but from your childs point of view he really needs Mommy and Daddy more
than DrTherapistresearcheradvocate - he only has ONE parent or set of parents Sometimes we get so caught up in helping them
that we forget the main point which is to be there physically and emotionally for them From the start concentrate on communication and
functional skills These things cannot wait until theyre older Typical children start learning those things immediately and nobody says
oh wait I dont know how to communicate with you yet - I need to take a class or oh wait youll have to learn to potty train or pull your
pants up and down when youre 15 (and 6 feet tall) its more natural to just hand-over-hand those motions from a very early age and
present communication pictures (or even the objects themselves to choose from) as a matter of course as you go about your day (This
is Dora this is a book - which one would you like)
If it takes years to develop the actual skills its better to start at age 2 and have that skill when theyre 12 then to start at age 12 to teach
skillswhen theyve already got ingrained habits and learned helplessness from having everything done for them Believe my aching
back when I say teaching a child to crawl into his carseat early on will save a lot of wear and tear on your body Kids with special needs
get just as much joy and confidence from doing for themselves as anyone You never know until you try Read Disability is Natural by
Kathie Snow This is common sense advice for parents of special needs kids that they really need to hearrdquo
Lulu Carpenter California
Simon - 23 yrs AS
Words Of
Wisdom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
8
Interested in what research has been published about AS Dr Ed Weeber will tell us how we can search for information and some of the
latest research happening around the globe
How can you get published scientific articles concerning Angelman syndrome research By accessing the free data base
called PubMed (wwwpubmedgov) This valuable resource is developed and maintained by the National Center for
Biotechnology Information (NCBI) at the National Library of Medicine (NLM) and contains more than 20 million references
to scientific articles The search function allows single or multiple terms to narrow the number of ldquohitsrdquo In addition you can
search for authors in order to find all of the publications from a specific researcher Many of these publications are free
and all of them have an abstract to describe the research
A search for the term ldquoAngelman syndromerdquo will reveal 1300 publications with the earliest dating back to 1950 To make
the science a little easier to digest every issue will present a selection of the latest published scientific articles with
Angelman syndrome in the title abstract or key words section of the paper Below are some recent papers that have come
out in the last few months
Title Recurrent fractures as a new skeletal problem in the course of Angelman syndrome
Journal Bone
Authors Rusińska A Dzwonek AB Chlebna-Sokoacuteł D
Department of Pediatric Propedeutics and Metabolic Bone Diseases Medical University of Lodz Poland Maria
Konopnicka Memorial Teaching Hospital No 4 Medical University of Lodz Poland
Abstract
Angelman syndrome is a genetically inherited syndrome with severe retardation of psychomotor development and speech
disturbances usually accompanied by epilepsy typical dysmorphic features and some skeletal symptoms The aim of the
current report is to present new skeletal symptoms which may occur in the course of AS based on a case report of an 8-
year-old girl with confirmed 15q1112 microdeletion and recurrent low-trauma bone fractures According to our knowledge it
is the first report of such skeletal symptoms in patient with a diagnosis of AS
Title Role of the ubiquitin ligase E6APUBE3A in controlling levels of the synaptic protein Arc
Journal Proc Natl Acad Sci U S A
Authors Kuumlhnle S Mothes B Matentzoglu K Scheffner M
Department of Biology and Konstanz Research School Chemical Biology University of Konstanz 78457 Konstanz
Germany
Abstract
Inactivation of the ubiquitin ligase E6 associated protein (E6AP) encoded by the UBE3A gene has been associated with
development of the Angelman syndrome Recently it was reported that in mice loss of E6AP expression results in
increased levels of the synaptic protein Arc and a concomitant impaired synaptic function providing an explanation for
some phenotypic features of Angelman syndrome patients Accordingly E6AP has been shown to negatively regulate
activity-regulated cytoskeleton-associated protein (Arc) and it has been suggested that E6AP targets Arc for ubiquitination
and degradation In our study we provide evidence that Arc is not a direct substrate for E6AP and binds only weakly to
E6AP if at all Furthermore we show that down-regulation of E6AP expression stimulates estradiol-induced transcription
of the Arc gene Thus we propose that Arc protein levels are controlled by E6AP at the transcriptional rather than at the
posttranslational level
Title Proteomic profiling in Drosophila reveals potential Dube3a regulation of the actin cytoskeleton and neuronal
homeostasis
Journal PLoS One
Authors Jensen L Farook MF Reiter LT
Department of Neurology University of Tennessee Health Science Center Memphis Tennessee United States of
America 9
Abstract
The molecular defects associated with Angelman syndrome (AS) and 15q duplication autism are directly correlated to
expression levels of the E3 ubiquitin ligase protein UBE3A Here we used Drosophila melanogaster to screen for the targets
of this ubiquitin ligase under conditions of both decreased (as in AS) or increased (as in dup(15)) levels of the fly Dube3a or
human UBE3A proteins Using liquid phase isoelectric focusing of proteins from whole fly head extracts we identified a total of
50 proteins that show changes in protein and in some cases transcriptional levels when Dube3a fluctuates We analyzed
head extracts from cytoplasmic nuclear and membrane fractions for Dube3a regulated proteins Our results indicate that
Dube3a is involved in the regulation of cellular functions related to ATP synthesismetabolism actin cytoskeletal integrity
both catabolism and carbohydrate metabolism as well as nervous system development and function Sixty-two percent of the
proteins were gt50 identical to homologous human proteins and 8 have previously be shown to be ubiquitinated in the fly
nervous system Eight proteins may be regulated by Dube3a at the transcript level through the transcriptional co-activation
function of Dube3a We investigated one autism-associated protein ATPα and found that it can be ubiquitinated in a Dube3a
dependent manner We also found that Dube3a mutants have significantly less filamentous actin than wild type larvae
consistent with the identification of actin targets regulated by Dube3a The identification of UBE3A targets is the first step in
unraveling the molecular etiology of AS and duplication 15q autism
Title Discrimination training reduces high rate social approach behaviors in Angelman syndrome proof of principle
Journal Res Dev Disabil
Authors Heald M Allen D Villa D Oliver C
Cerebra Centre for Neurodevelopmental Disorders School of Psychology University of Birmingham Edgbaston B15 2TT
UK mxo988bhamacuk
Abstract
This proof of principle study was designed to evaluate whether excessively high rates of social approach behaviors in children
with Angelman syndrome (AS) can be modified using a multiple schedule design Four children with AS were exposed to a
multiple schedule arrangement in which social reinforcement and extinction cued using a novel stimulus were alternated
Twenty-five to 35 discrimination training sessions were conducted and levels of approach behaviors were measured before
and after the discrimination training for two children All four participants evidenced discrimination between conditions of
reinforcement and extinction after 16-20 teaching sessions as indicated by lower rates of social approach behaviors in the
presence of the S(Δ) for extinction Reversal effects for the two children for whom this design was implemented were evident
The results demonstrate that after repeated training the use of a novel stimulus can serve as a cue for children with AS to
discriminate adult availability This is a potentially effective component of a broader intervention strategy but highlights the
need for sustained teaching procedures within this population
Title The Angelman syndrome protein Ube3aE6AP is required for Golgi acidification and surface protein sialylation
Journal J Neurosci
Authors Condon KH Ho J Robinson CG Hanus C Ehlers MD
Department of Neurobiology Duke University Medical Center Durham North Carolina 27710 USA
Abstract
Angelman syndrome (AS) is a severe disorder of postnatal brain development caused by neuron-specific loss of the HECT
(homologous to E6AP carboxy terminus) domain E3 ubiquitin ligase Ube3aE6AP The cellular role of Ube3a remains
enigmatic despite recent descriptions of synaptic and behavioral deficits in AS mouse models Although neuron-specific
imprinting is thought to limit the disease to the brain Ube3a is expressed ubiquitously suggesting a broader role in cellular
function In the current study we demonstrate a profound structural disruption and cisternal swelling of the Golgi apparatus
(GA) in the cortex of AS (UBE3A(m-p+)) mice In Ube3a knockdown cell lines and UBE3A(m-p+) cortical neurons the GA is
severely under-acidified leading to osmotic swelling Both in vitro and in vivo the loss of Ube3a and corresponding elevated
pH of the GA is associated with a marked reduction in protein sialylation a process highly dependent on intralumenal Golgi
pH Altered ion homeostasis of the GA may provide a common cellular pathophysiology underlying the diverse plasticity and
neurodevelopmental deficits associated with AS
10
A Grandmother finds a solution for her granddaughter and all of our kids with Angelman Syndrome
By Lois Carroll
When my growing granddaughter who has AS couldnt be fitted with large enough bibs I took out my sewing machine to
solve the problem I showed the resulting smock to friends and my project Sophies Smocks named after my granddaughter
was born so that many kids with AS could have a free smock
I buy new and gently used turtlenecks and trim Supporters donate their time to help and their money for postage and
materials to keep the project ongoing All the smocks are FREE for individuals with AS I have child size SMALL to adult XL
They are available to others for a donation to cover at least the postage to keep the project going
To get a smock all you have to do is ask by emailing smockscoxnet Give me your childs shirt size plus a name and
mailing address including zip Ill send one as soon as I can Theres no catch and no obligation I mail around the world and
free means free You can check it out at my website httploiscarrollbookscomindexSShtm
Thank you
Grandma Lois
Sophies Smocks
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
Clinical Trial of Low Glycemic Index Treatment proves effective for reducing seizures by 80 ndash 90
Dr Thibert and Dr Elizabeth Thiele (both are members of the Scientific Advisory board for the Angelman Syndrome
Foundation) were able to launch a clinical study to determine the efficacy of the Low Glycemic Index Treatment in
reducing seizures in individuals with Angelman Syndrome In July 2012 the results were in and published in
Epilepsia and in the Angelman Syndrome Foundation newsletter
Epilepsia link httponlinelibrarywileycomdoi101111j1528-1167201203537xabstract
PubMed link httpwwwncbinlmnihgovpubmed22779920
You can read my interview with Dr Thibert on my blog wwwMeetTheFamiliesofASblogspotcom
11
NEW DEVELOPMENTS AT THE ANGELMAN SYNDROME FOUNDATION
Angelman Syndrome Foundation Invests $125 Million in AS ResearchDue to your support the Angelman Syndrome Foundation is able to award more than $125 million in grants for AS research this current grant cycle This yearrsquos funded research will contribute to all future AS preclinical and clinical trials helping move AS research closer to developing treatments for individuals with AS while furthering the research communityrsquos understanding of the complexities of AS Thanks to you this yearrsquos funded research will seek to define the optimal window for potential treatment further understanding of varying UBE3A gene mutations and deletions and determine if a current FDA-approved drug is a viable treatment in an AS mouse model
ASF Biennial Conference Your Ultimate AS ResourceThe Angelman Syndrome Foundationrsquos 2013 Biennial Conference Championing Progress will be held July 23-26 at the Walt Disney World Swan amp Dolphin resort in Orlando Florida As a central resource for your familyrsquos unique needs and those of your loved one with AS the Conference addresses all aspects of living with AS and provides the opportunity to network and learn from a variety of experts and keynote speakers attend breakout sessions and participate in collaborative opportunities with other families
iPads For ASTo help individuals with AS overcome some of the challenges associated with communication the Angelman Syndrome Foundation has launched the iPads For AS program which provides Applereg iPadsreg for up to 100 individuals who qualify for the program Requirements for
participation include working with a speech pathologist and conducting quarterly assessments among others
ASF Honors Your InvestmentDue to your support and that of more than 7000 volunteers during the last 21 years the Angelman Syndrome Foundation has been able to
bull Providemorethan250000individuals with information support and connections to resources
bull Raisemorethan$125million to fund research and provide direct support to individuals affected by AS
bull Grantmorethan$58millionto more than 70 research endeavors to support a diverse set of research projects
bull Holdmorethan186individualwalks in 42 cities across the country that have been attended by more than 52000 individuals
The Angelman Syndrome Foundation is honored to serve as a resource to the AS community and welcomes any individual touched by AS to contact the organization
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Thank you for your supportThe 2013 Angelman Syndrome Foundation National Walk boasted record participation with more than 11700 individuals who to date have raised more than $1 million towards the $11 million fundraising goal Fundraising continues through September 30 The Angelman Syndrome Foundation is deeply grateful for the time energy and support that you and the AS community invested to raise these funds that provide direct support to individuals with AS and their families through programs resources and networking opportunities and that fund research that will help lead to a cure for AS
The Power of Cooking
Angelman syndrome ketogenic diets and LGIT
By Sybille Kraft Bellamy
One of the best ways to naturally help our angels is by giving them a
nutritious healthy diet
Our angels are fragile and very sensitive to their environment
Little things minor changes can trigger dramatic consequences
Each child is unique each parent is special
We have to rediscover the power of food
Therapeutic diets like ketogenic diets have been used for years to help
control epilepsy Today the LGIT (Low Glycemic Index Treatment) is
one of the easiest diets to give to our angels It is one of the weapons
we can use to protect them from the multiple risks they face Seizures
are a major and common risk for our angels
The LGIT helps balance and reinforce the energy they need to keep
them happy healthy and at full cognitive capability
The modification of your childrsquos diet can be done one step at a time
Small changes can lead to big improvements
This is a unique opportunity for you MOM and DAD to directly affect
your childrsquos health and quality of life
There is nothing more terrible than to feel helpless when your child is
sick Our Angelrsquos challenges are numerous and it is proven that a
special diet can help avoid many of their complications
The medical community is embracing this form of treatment to remedy
many disorders worldwide The Angelman community is hard at work to
bring awareness of this treatment to our families Resources such as
ldquoAngleman Syndrome Dietrdquo on Facebook and The Charlie Foundation
can provide information and support to help you start taking control of
your childrsquos diet health and wellbeing
LGIT Testimonial - Jay and Joel are my 26 year old identical twin sons who both have Angelman Syndrome
Seizures have always been a huge problem for them at one point they were both having over 250 grandmals a day
and spent almost a year in the hospital trying to get them controlled Doctors at that time only gave them a 1
chance to survive Now at age 26 Joelrsquos seizures are well controlled with meds but Jayrsquos have never been controlled
In March we started the LGIT after talking to his Dr and getting a lot of support and advice from Sybille Since
starting the diet we have seen a huge decrease in the amount and severity of Jayrsquos seizures Before the diet he
would have 10-20 seizures a week and need a rescue med 3x a week and now he may have only 4-5 seizures a
month Prior to starting the LGIT Jayrsquos seizures were very intense grandmals where he would stop breathing and turn
blue each time and he would have several in a row we have not seen him turn blue or stop breathing since the diet I
believe the diet is helping him tremendously and he is much more alert and vocal Their neurologist has begun
weaning Joel off of one of his seizure meds because of the side effects and we have now started Joel on the LGIT
diet also and he too is acting more alert and vocal (and no seizures) - Lisa Truax-Murphy
Recipes can be found on
Facebookcomangelmansyndromediet
13
LGIT Testimonial - Anna had a terrible start She could not drink and because of this she was hospitalized 3 weeks
after her birth They soon discovered she had epilepsy and here in The Netherlands I understood almost all babies with
epilepsy get Phenobarbital Because I was not satisfied with the care Anna received we decided to move to another
hospital So almost 6 months later the new neurologist advised us to stop with Phenobarbital and start with Keppra
And it was a good choice When Anna was 1 year old she finally got diagnosed Angelman Syndrome With Keppra
we succeeded to keep her seizure free for almost 2 years When the seizures came back we started with Rivotril
(Clonazepam) in addition to the Keppra and it helped her for 2 years but then the seizures came back again Her
neurologist advised us to start with a third drug but we didnrsquot want to give her more medicine At the same time I read
the research article about the LGIT and I got enthusiastic about it I had to give it a try Annarsquos neurologist was a bit
suspicious but I insisted so he helped us The first month was terrible Anna got more seizures and was very tired I was
so afraid I was only complicating her life instead of helping her I was so down that I just wanted to stop the diet But
after a long phone call with Sybille Kraft I decided to continue the diet for just a few more weeks And Irsquom so happy we
did this A week later Annarsquos absences were gone She started to walk again became more alert And the best thing
of all was that for the first time in her life she slept for 6 hours without waking This was so amazing
The LGIT made a big change in Annarsquos life She is able to concentrate shersquos more active and sleeps better Its just
amazing At first the diet appears very complicated This is because we are so used to eating a lot of bread sugar and
processed food If you just use fresh vegetables meat eggs and fish you can easily cook something very healthy tasty
and LGIT When travelling we always take our own food with us for Anna and there is always something on the menu in
a restaurant that she can eat
-Violeta Giurgi
Summer Time is a great time to find your local farmerrsquos market and buy fresh fruits amp veggies
14
Angels in Action
Angels in Action is where you will read about the inspiring stories of the success in gained skills and abilities by our loved ones with
Angelman Syndrome Written by the families we join in celebrating the abilities no matter how big or small We believe it is
important to inspire everyone with these real stories of our endearingly termed lsquoAngels in Actionrsquo
Possibilities abound when we have a vision By Karen VanPuyenbroeck of Illinois
Angel Mom to Krista 10 years old AS UPD
When I was asked by our Editor In Chief Lizzie Sordia to write a piece about Kristas abilities for this section I asked myself what
were my burning questions about how to develop abilities in my daughter and for me I just really wanted to figure out how I could
teach her to speak I knew that there had to be a way and I obsessed on this topic for hours days months and yes even years It
took me quite a while to find an angel with functional speech but I found him and once I found him I knew that it was possible for my
angel to speak too I wanted to know how it was possible And the big lesson that I learned from Richies mom Dawn was that they
first believed that he could develop this ability and so did his therapists From that point on I developed my own belief and eliminated
therapists who did not support my vision for my daughter of verbal communication and unfortunately for me this meant that Krista
received no speech therapy for a time and mom became her therapist with the help of a program called NACD Through NACD I
learned that an unskilled parent who was willing to learn how to implement therapy who would spend many hours per week
implementing therapy and who could maintain the vision for their child was preferable to a highly skilled professional therapist who
could only spend an hour per week with my child and who did not share my vision
Today at age 10 Krista speaks over a hundred words and has quite a few phrases her speech has been referred to as functional
by her school and by the last two speech therapists who have evaluated her Kristas favorite and most consistent phrase over the
years has been I love you and if those were the only words that I had ever heard spoken from the lips of my angel all of the energy
that we have put into her healing program would have been worth it and I would do hundreds of times over again
Heres how we did it
1 We cultivated belief I have to credit my husband Steve for this This angel Daddy always knew that his girl was A-ok And to my
kids Nana who said simply if you want her to speak we will teach her to speak Because Nana has adult twin boys with autism as
a result of Urea Cycle Disorder I knew that she knew exactly what she was talking about and so I believed her Kristas older
siblings played an essential role by always speaking to her as if she could speak back
2 I tossed out any lsquoDebbie Downerrsquo therapists or health care providers in her life at times this meant that she did not receive
certain therapies at all but again I had come to understand that it was better that I work with her with all of my love support and
belief than it was for a professional who didnt see things that way
3 I only shared my vision for my daughter with people who believed in her ability well meaning friends and relatives may want to
help you accept your childs limitations I finally came to understand that this was their position and realized that pushing the issue
was only baiting them into an oh you poor dear its sad that you have not come to terms with your childs disability type of lecture
4 Gluten and Casein free diet baby Thanks to a miraculous accident I bought the wrong Autism book at Barnes and Noble called
Unraveling The Mystery of Autism by author Karyn Seroussi This started us on an amazing journey that lead us to the wonderful
discovery that by removing these offending proteins my daughters health would improve drastically and as a result of her improved
health status Krista gained many wonderful skills much too many to mention here but improved speech was definitely a biggie
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
15
5 At 5 orsquoclock sharp every morning Krista liked to crawl out of my bed and venture off to her play room
where shed play with blocks and just adored taking things apart During this play time I would get down
on the floor with her grab a block put it near my mouth and just repeatedly say Mama The toy was
used to bring her attention to my mouth a technique that I learned while researching the Son-Rise
program This developed into me singing Mama over and over again and pretty soon my girl was
saying Mama so Id check in with her daily to make sure that she still had Mama down pat and I then
moved on to Dada and Baba etc Some words came very easily and some did not but I remained
grateful for every word or approximation that this angel girl could produce never giving a second
thought to the ones that were really tough for her Always referring to her speech as developing
6 Through Glenn Domans book What to do About Your Brain Injured Child (Brain injury in this context
referring to any condition affecting your childs cognitive ability) I learned that I should listen out for
different sounds that she would make for example many babies will babble mmm You catch the child
saying mmm and you sit him down and say I have noticed that you can say mmm Now we will take
that mmm sound and it will mean Mama In this scenario every time you hear the child babble
mmm you will quickly reinforce this by saying something like You said Mama I love it when you say
Mama You called me and I came My Krista is very high intensity and responds very well to intense
animated and even loud praise so this method has proven very effective for us
7 Good probiotics to clear up yeast in the gut and to help to heal Kristas gut was essential
8 Krista gained even more speech while participating in the Angelman Syndrome Supplement Trial
9 We used MB12 shots with much success in Krista learning to string together longer sentences
10 Lastly in recent months Lizzie talked me into supplementing with a fish oil that is specifically
formulated to aid in speech development We saw great results I learned quite a bit about therapeutic
dosing of fish oil at Integrative Nutrition where Dr Sears of The Zone Diet was a guest lecturer and huge
advocate for this approach From this I learned that Krista needed about three times the amount of fish
oil than what is recommended for general health in order to be able to see an increase in ability for
speech
My determination for Krista to learn to speak started when she was a mere baby she is now 10 and Im
still learning and remaining open to safe and effective ways of helping her in the area of speech as well
as many other areas of her life that will help her to become an independent young lady
If you are reading this and feeling a bit bummed out that you were not as convinced about the speech
thing as I was or you feel like oh had I only been that determined maybe I would be hearing my sweet
Angels voice Let me say this DO NOT feel that way There was something that seemed out of
reach for your Angel that you were able to help him or her accomplish that I may have not been able to
help my daughter to accomplish We only have so much energy to expend in a day I chose to expend it
on speech Another parent might be more consumed by helping their child to gain the ability to walk
independently maybe you always envisioned your angel riding a bike or reading whatever it is I hope
our story encourages you to cultivate a belief and unwavering faith that will lead to the achievement of
yours and more importantly your Angels dreams
Written by
Karen VanPuyenbroeck
Angelman Today Magazine
Associate Editor
KarenAngelmantodayGmailcom
Karen is a certified Health Coach providing Nutrition Counseling services to the special needs
community with a focus on Angelman syndrome To learn more about her services visit her website at wwwAngelFoodsbyKarencom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
16
17
Social Security Disability Benefits and Angelman Syndrome Angelman Syndrome (AS) is a complex genetic disorder characterized by developmental delays and neurological
problems Children with AS often require around-the-clock care for their entire lives
Parents of children who have AS often dedicate extra time energy and even money to provide a high quality of life for
their child Assistive technology supportive care and specialty medical treatments rack up expenses quickly Parents
may even find it necessary to take time away from work to be with their child The resulting loss of income and lack of
medical insurances can be financially devastating
If your child has been diagnosed with Angelman Syndrome he or she may qualify for financial assistance in the form of
Social Security Disability (SSD) benefits SSD payments can be used to cover your childrsquos expensesmdashincluding anything
from food to supportive services to medical bills
The following article will give you a basic overview of the options available to your family and will provide you with the
information needed to begin the SSD application process
Compassionate Allowances and Angelman Syndrome
Typically the SSD application process can take months or even years to complete Fortunately the SSA recognizes that
individuals with severely disabling conditions may not be able to wait that long to receive disability benefits For this
reason the SSA offers Compassionate Allowances (CAL) processing to individuals with certain disabilities Applicants
who have been diagnosed with conditions covered by the CAL program can receive SSD benefits in as little as 10 days
Angelman Syndrome is one of approximately 200 conditions that qualify for CAL processing You will not need to fill out
additional paperwork or request to receive CAL processing The SSA will evaluate your childrsquos claim and expedite it
accordingly
Social Security Disability Insurance and Supplemental Security Income
The SSA offers disability benefits through two separate programsmdashSSDI and SSI Each of these programs has very
specific technical eligibility requirements
SSDI stands for Social Security Disability Insurance and provides benefits to disabled workers Eligibility for SSDI is
dependent on an applicantrsquos employment history as well as the amount of taxes he or she has paid into the system
Children and young adults donrsquot often qualify for SSDI on their own record because they havenrsquot had the chance to work
and pay into the program
It is important to note that if the childrsquos parent is qualified for SSDI or retirement benefits the child may qualify for
dependent benefits based on a parent or guardianrsquos earnings record If your child is technically an adult but was
diagnosed with Angelman Syndrome before age 22 he or she is considered to be an adult child Adult children may also
qualify for a childrsquos dependent benefits
SSI stands for Supplemental Security Income SSI is a needs-based program that provides financial assistance to elderly
or disabled individuals who earn very little income Eligibility for SSI is based on financial need not employment history
To qualify applicants cannot exceed specific financial limitations set in place by the SSA
In the case of a child a portion of his or her parentrsquos income will be ldquodeemedrdquo This means that the SSA will evaluate the
deemed income to determine whether or not the child meets the SSI financial eligibility requirements Deeming occurs
for children who are under the age of 18 unmarried and still live with a parent or guardian Parentsrsquo earned income
unearned income and financial resources will all be taken into consideration
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
18
Income and resources that will not be deemed includes the following
Welfare payments
Public Income Maintenance (PIM) including Temporary Assistance to Needy Families (TANF) and VA pension for
veterans
Food stamps
Disaster assistance
Foster care payments
Tax refunds on real property (property that includes land andor buildings)
Home grown produce used for personal consumption
The SSA also makes the following allowances for living expensesmdashmeaning that the following will be deducted from the
amount of income deemed to your child
$365 a month for each additional child that you support
$710 a month for a single parent or $1066 for two parents
It is important to note that this amount will not be subtracted for parents or children who already receive public assistance
Once your child turns 18 SSI payments will be based on his or her own earnings record
Medical Requirements
In addition to the previously mentioned technical requirements your child must also meet very specific medical
requirements to qualify for disability benefits The requirements can be found in a publication known as the ldquoblue bookrdquo
The SSArsquos blue book contains listings for potentially disabling conditions as well as the specific medical criteria an
applicant must meet to qualify under each condition
The SSA has separate listings for adults and children The specific medical requirement that your child will have to meet is
dependent on his or her age Your child will have to meet one or more of the following blue book listings to qualify for
disability benefits
Section 1205mdashMental Retardation (Adult)
Section 11205 ndash Mental retardation (Child)
Section 11008 B ndash Catastrophic Congenital Disorder (Child)
You can access these specific listings on the SSArsquos website
Preparing for the Social Security Disability Application Process
Even though your child qualifies for the Compassionate Allowances program you will still have to provide thorough medical
evidence that proves the extent of your childrsquos condition Medical evidence should include records of your childrsquos diagnosis
treatments response to treatments hospitalization records and medical test results You should also collect statements
from professional adults that interact with your child on a daily basis This can include doctors teachers and therapists
These statements should provide details about your childrsquos limitations and abilities
The SSA may also ask for evidence of the following
Your childrsquos inability to perform age appropriate functions
IQ test results showing a marked developmental deficit based on age
Other developmental delays and impairments in physical and mental functioning again based on age
You should collect these documents prior to beginning the application process to prevent any delays in the processing of
your childrsquos claim
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
19
Starting Your Application
The SSD application procedures will differ depending on whether you are filing for SSI benefits or SSDI dependent
benefits
If you are interested in learning more about dependent benefits you should call the SSArsquos main phone line (1-800-
772-1213) or contact the representative who handles the eligible parentrsquos claim
To apply for SSI benefits on behalf of a child you will be asked to complete two forms the ldquoApplication for
Supplemental Security Incomerdquo and the ldquoChild Disability Reportrdquo Currently only the child disability report can be
completed online You will have to schedule an appointment with your local Social Security office to complete the
application for SSI
If you are applying for SSI on behalf of an adult you will have to complete the same process with an ldquoAdult
Disability Reportrdquo rather than a child disability report
It is important that you realize how overwhelming and complicated the SSD application process may become In
fact many initial applications are denied and require the applicant to request an appeal hearing If your childrsquos
application is denied do not give up The key to receiving disability benefits it to be persistent in your efforts
For more information about applying for disability benefits visit Social Security Disability Help (wwwdisability-
benefits-helporg) or contact Molly Clarke at macssd-helporg
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
20
READ MORE ABOUT OUR ACTIVITIES AND BROWSE THE
INFORMATION PAGES HERE
httpangelmannetworkwordpresscom
Our successful International Angelman Day celebrations
held across the country
httpangelmannetworkwordpresscomlearn-
aboutwhat-is-the-angelman-network
For up to date info on Therapies
httpangelmannetworkwordpresscomtherapy-for-as
For information and ideas regarding Communication
httpangelmannetworkwordpresscomeducation-and-
communication
For general information on Epilepsy in AS
httpangelmannetworkwordpresscomangelman-
syndromeangelman-syndrome-epilepsy
The Angelman Network was
established in New Zealand as a
Charitable Trust in 2011 (CC46746)
We seek to connect and support
people impacted by Angelman
Syndrome
++++++++++++++
We are New Zealandrsquos only organisation
solely dedicated to promoting
awareness for Angelman Syndrome
and to actively promote and support
the progress being made with world-
wide research on AS
++++++++++++++
Our Information Pages are
regularly updated to include
newimproved ideas and links as
these become available
+++++++++++++++
Our aim is to offer an active and
accurate website which will become
a helpful resource for families and
provide useful and reliable information
for medical and educational
professionals both in
NZ and around the world
WE ARE ON FACEBOOK AT
Non-profit page
httpswwwfacebookcomtheangelmann
etwork
Informal group
httpswwwfacebookcomgroups10468
6089609200
Our ACTION ANGEL TEAM is an informal fundraising group who regularly raise funds and awareness for Angelman Syndrome by running in local races wearing their signature white wings
22
Shea teaches himself to read By Carol Pulver of Florida
Angel Mom to Shea 22 years old AS Del +
Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery
followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done
shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful
Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding
and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a
speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him
to sustain a suck for more than a few seconds
At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory
issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the
milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was
just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately
schedule a neurology consultation get an EEG and do blood work to check for abnormalities
Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family
pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with
the neurologist and the blood work we received some answers
I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old
The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He
told us that our son would never be able to walk to talk or to function as our other children and that we might as well
ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I
sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless
We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do
everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but
the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear
I want to share some of the things wersquove learned along this journey
1 Always trust your intuition No one knows your Angel(s) as well as you do
2 Never put a limit on your Angelrsquos abilities
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
23
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
July 2013 Premier Online Edition
Cover Credits
Kaylee Fingold
AS UBE3A
Photographed by
Wes Bonnefin Photography
wwwbonnefinstudioscom
Angels in
Action
Social
Security
Benefits
18 This article will give
you a basic overview of
the options that may be
available for your family
and will provide you with
the information needed to
begin the Social Security application process
6 Understanding Genetic
Classes of Angelman
Syndrome
Charles Williams MD is a
Professor of Pediatrics and
Genetics Division of
Genetics and Metabolism
Department of Pediatrics
University of Florida
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
GF
27 Gluten Free
Living Not just a fad diet find
out its many benefits for
those with Angelman
Syndrome Find out some
of the symptoms that go
unnoticed
15 Angels in Action
Inspiring stories from
families celebrating the
abilities of our children
with Angelman Syndrome
endearing called
ldquoAngelsrdquo
In Every Issue
5 Contributors
AS Research
9 Latest research by Ed Weeber
10 LGIT study by Dr Thibert and Dr Elizabeth Thiele
Low Glycemic Index Treatment proves
Effective at reducing seizures
41 Minocycline update by FAST
Newly Diagnosed Families
6 Understanding Genetic Classes
7 lsquoWelcome to Hollandrsquo by Emily Perl Kingsley
8 Words of Wisdom
Quotes from parents
15 Angels in Action - Krista
23 Angels in Action ndash Shea
29 Angels in Action - Carter
Features
2 Letter from the Editor
Inspiration for creating Angelman Today
4 Our Journey
18 Social Security Benefits
32 RDI Therapy - Relationship Development
Intervention
Angelman Syndrome Foundations
12 Angelman Syndrome Foundation US
13 Angelman Networks New Zealand
21 Angelman Syndrome Ireland
25 Casa Angelman Argentina
41 Foundation for Angelman Syndrome Therapeutics
3
Together we are all on a journey A journey that is the same and different
There is no right way or wrong We span across the globe
There is so much we can learn from one another We can share our experiences
of laughter joy failure and triumph Together our global community
will become connected like never before And we will make great progress Improve the lives of our families
And maybehellip just maybehellip Take part in the ultimate solution
In finding the cure
~Lizzie Sordia Editor in Chief
Our Journey Begins Here
4
Contributors
Karen VanPuyenbroek Associate Editor
Isabel Orellana
Marc Bissonnette
Sybille Kraft
Bellamy
A Big Thank You to our contributors for helping to make this magazine a reality Your talent passion and love for our kids is what Angelman Today is all about -Lizzie Sordia Editor ndash in - Chief
Angelman Today
Edwin Weeber PhD Professor Dept of Molecular Pharmacology and Physiology Chief Scientific Officer USF Health Byrd Alzheimers Institute Director Neurobiology of Learning and Memory Laboratory University of South Florida Healths
Morsani College of Medicine
Charles A Williams MD Professor of Pediatrics and
Genetics Division of Genetics and Metabolism Department
of Pediatrics University of Florida
5
Conducting blood testing to diagnose
Angelman syndrome (AS) can be a
complicated matter Here I summarize the
different genetic causes of AS and provide
general guidelines about how to use genetic
tests to confirm the diagnosis of AS First let
us look at the genetic mechanisms that cause
AS
A chromosome 15 pair is illustrated for each class depicted but the other chromosomes are not shown The P
indicates the maternally-derived chromosome and the M indicates the maternally-derived one The shaded
chromosomes have a paternal pattern of gene functioning while the unshaded chromosomes have a maternal
pattern AS can be caused by either a large chromosome deletion (70 of the time) a disruptive mutations in the
UBE3A gene inherited from the mother (indicated by the X) inheritance from the father of 2 normal number 15
chromosomes (eg paternal uniparental disomy [UPD]) or an imprinting defect (ID) occurring when the
chromosome 15 inherited from the mother has the paternal pattern of gene functioning because of a problem in
the imprinting center (denoted by the small open circle)
In addition to these mechanisms a clinical diagnosis of AS may be given even though the genetic testing is
normal The percentages indicate how common each mechanism occurs
How do we use genetic testing and what is the sequence of testing There are many pathways to diagnosis for
families undergoing testing for AS but the most common testing pathway is summarized here
Understanding Genetic Classes of Angelman Syndrome
Dr Charles Williams
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
6
Welcome To Holland
Welcome To Holland
by
Emily Perl Kingsley
copy1987 by Emily Perl Kingsley All rights reserved Reprinted with permission of the author
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not
shared that unique experience to understand it to imagine how it would feel Its like this
When youre going to have a baby its like planning a fabulous vacation trip - to Italy You buy a bunch of guide
books and make your wonderful plans The Coliseum The Michelangelo David The gondolas in Venice You may
learn some handy phrases in Italian Its all very exciting
After months of eager anticipation the day finally arrives You pack your bags and off you go Several hours later
the plane lands The flight attendant comes in and says Welcome to Holland
Holland you say What do you mean Holland I signed up for Italy Im supposed to be in Italy All my life Ive
dreamed of going to Italy
But theres been a change in the flight plan Theyve landed in Holland and there you must stay
The important thing is that they havent taken you to a horrible disgusting filthy place full of pestilence famine and
disease Its just a different place
So you must go out and buy new guide books And you must learn a whole new language And you will meet a
whole new group of people you would never have met
Itrsquos just a different place Its slower-paced than Italy less flashy than Italy But after youve been there for a while
and you catch your breath you look around and you begin to notice that Holland has windmillsand Holland has
tulips Holland even has Rembrandts
But everyone you know is busy coming and going from Italy and theyre all bragging about what a wonderful time
they had there And for the rest of your life you will say Yes thats where I was supposed to go Thats what I had
planned
And the pain of that will never ever ever ever go away because the loss of that dream is a very very significant
loss
But if you spend your life mourning the fact that you didnt get to Italy you may never be free to enjoy the very
special the very lovely things about Holland
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
7
ldquoThe words of advice I offer newly diagnosed families today starts out a little different than it did a few years ago In the past I might have
suggested parents not jump into researching the syndrome and to ignore the majority of what has been written by experts Today
there is a multitude of valuable information available and it is written by the true experts the parents of the Angelman Syndrome
Community Do your research Read all you can Join the online support groups and ask questions Find local families and meet their
families You are going to see a wide variety of personalities abilities opinions and you are going to feel right at home
Here are a few tried and true words of advice that I still share because they have stood the test of time
1 Never underestimate your child and do not base your expectations on the evaluations of others
2 Your child is your child and unless you are neglecting or endangering your child that does not change because of a diagnosis There
are many people out there who think they know best but a parents instinct and the intimate knowledge they have of their child serves as
the best indicator of what is right and of what needs to be done
3 No matter what the numbers say your child is still one of a kind and always will be A diagnosis is a way of helping you help your child
but it does not define your child or your family Your child has a syndrome The syndrome does not have your child
4 Be a family first Try not to let a diagnosis consume you 247 therapy is not healthy for anyone Love and play are the best gifts you
can give your child and are the best stimulants for growth and development
5 Take care of yourself Take care of your spouse and take care of your other children It is easy to focus on your child with a diagnosis
and not realize you have let other things go We have all tried to be the strong one and prove we can do this but I assure you the earlier
you learn to allow others to help out the easier it will be
6 There will be good days and bad days Your emotions will betray you when you least expect it You will experience the highest and
lowest of emotions and sometimes on the same day You will sweat the small stuff and you will celebrate the small stuff You have
joined a community that will be here for all of this and we will understandrdquo
Brenda Dixon Mississippi
Jonathan - 33yrs AS Del+
ldquoNever accept a doctor telling you that your child lsquowont be able torsquo
Never under estimate you childs potential--our kids love to learn Always
have faith in your gut instinctsMomma (or Daddy) usually knows best
Look forward with faith in the advances and treatments that are on the
horizon but as you struggle (from time to time) in your daily life with an
Angel (and there will be struggles) know that you are not alone--we are
all in this together Dont be afraid to ask questions Support tears
cheers and hugs are just a phone call or Facebook post away Take time
each day to recognize the blessings in your life Enjoy your Angel hugsrdquo
Carol Pulver Florida
Shea Pulver - 22yrs AS Del+
ldquoDont allow anyone even yourself to see a diagnosis instead of a child A child needs a parent more than a therapist or researcher
Yes we need to wear several hats to be good parents - but from your childs point of view he really needs Mommy and Daddy more
than DrTherapistresearcheradvocate - he only has ONE parent or set of parents Sometimes we get so caught up in helping them
that we forget the main point which is to be there physically and emotionally for them From the start concentrate on communication and
functional skills These things cannot wait until theyre older Typical children start learning those things immediately and nobody says
oh wait I dont know how to communicate with you yet - I need to take a class or oh wait youll have to learn to potty train or pull your
pants up and down when youre 15 (and 6 feet tall) its more natural to just hand-over-hand those motions from a very early age and
present communication pictures (or even the objects themselves to choose from) as a matter of course as you go about your day (This
is Dora this is a book - which one would you like)
If it takes years to develop the actual skills its better to start at age 2 and have that skill when theyre 12 then to start at age 12 to teach
skillswhen theyve already got ingrained habits and learned helplessness from having everything done for them Believe my aching
back when I say teaching a child to crawl into his carseat early on will save a lot of wear and tear on your body Kids with special needs
get just as much joy and confidence from doing for themselves as anyone You never know until you try Read Disability is Natural by
Kathie Snow This is common sense advice for parents of special needs kids that they really need to hearrdquo
Lulu Carpenter California
Simon - 23 yrs AS
Words Of
Wisdom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
8
Interested in what research has been published about AS Dr Ed Weeber will tell us how we can search for information and some of the
latest research happening around the globe
How can you get published scientific articles concerning Angelman syndrome research By accessing the free data base
called PubMed (wwwpubmedgov) This valuable resource is developed and maintained by the National Center for
Biotechnology Information (NCBI) at the National Library of Medicine (NLM) and contains more than 20 million references
to scientific articles The search function allows single or multiple terms to narrow the number of ldquohitsrdquo In addition you can
search for authors in order to find all of the publications from a specific researcher Many of these publications are free
and all of them have an abstract to describe the research
A search for the term ldquoAngelman syndromerdquo will reveal 1300 publications with the earliest dating back to 1950 To make
the science a little easier to digest every issue will present a selection of the latest published scientific articles with
Angelman syndrome in the title abstract or key words section of the paper Below are some recent papers that have come
out in the last few months
Title Recurrent fractures as a new skeletal problem in the course of Angelman syndrome
Journal Bone
Authors Rusińska A Dzwonek AB Chlebna-Sokoacuteł D
Department of Pediatric Propedeutics and Metabolic Bone Diseases Medical University of Lodz Poland Maria
Konopnicka Memorial Teaching Hospital No 4 Medical University of Lodz Poland
Abstract
Angelman syndrome is a genetically inherited syndrome with severe retardation of psychomotor development and speech
disturbances usually accompanied by epilepsy typical dysmorphic features and some skeletal symptoms The aim of the
current report is to present new skeletal symptoms which may occur in the course of AS based on a case report of an 8-
year-old girl with confirmed 15q1112 microdeletion and recurrent low-trauma bone fractures According to our knowledge it
is the first report of such skeletal symptoms in patient with a diagnosis of AS
Title Role of the ubiquitin ligase E6APUBE3A in controlling levels of the synaptic protein Arc
Journal Proc Natl Acad Sci U S A
Authors Kuumlhnle S Mothes B Matentzoglu K Scheffner M
Department of Biology and Konstanz Research School Chemical Biology University of Konstanz 78457 Konstanz
Germany
Abstract
Inactivation of the ubiquitin ligase E6 associated protein (E6AP) encoded by the UBE3A gene has been associated with
development of the Angelman syndrome Recently it was reported that in mice loss of E6AP expression results in
increased levels of the synaptic protein Arc and a concomitant impaired synaptic function providing an explanation for
some phenotypic features of Angelman syndrome patients Accordingly E6AP has been shown to negatively regulate
activity-regulated cytoskeleton-associated protein (Arc) and it has been suggested that E6AP targets Arc for ubiquitination
and degradation In our study we provide evidence that Arc is not a direct substrate for E6AP and binds only weakly to
E6AP if at all Furthermore we show that down-regulation of E6AP expression stimulates estradiol-induced transcription
of the Arc gene Thus we propose that Arc protein levels are controlled by E6AP at the transcriptional rather than at the
posttranslational level
Title Proteomic profiling in Drosophila reveals potential Dube3a regulation of the actin cytoskeleton and neuronal
homeostasis
Journal PLoS One
Authors Jensen L Farook MF Reiter LT
Department of Neurology University of Tennessee Health Science Center Memphis Tennessee United States of
America 9
Abstract
The molecular defects associated with Angelman syndrome (AS) and 15q duplication autism are directly correlated to
expression levels of the E3 ubiquitin ligase protein UBE3A Here we used Drosophila melanogaster to screen for the targets
of this ubiquitin ligase under conditions of both decreased (as in AS) or increased (as in dup(15)) levels of the fly Dube3a or
human UBE3A proteins Using liquid phase isoelectric focusing of proteins from whole fly head extracts we identified a total of
50 proteins that show changes in protein and in some cases transcriptional levels when Dube3a fluctuates We analyzed
head extracts from cytoplasmic nuclear and membrane fractions for Dube3a regulated proteins Our results indicate that
Dube3a is involved in the regulation of cellular functions related to ATP synthesismetabolism actin cytoskeletal integrity
both catabolism and carbohydrate metabolism as well as nervous system development and function Sixty-two percent of the
proteins were gt50 identical to homologous human proteins and 8 have previously be shown to be ubiquitinated in the fly
nervous system Eight proteins may be regulated by Dube3a at the transcript level through the transcriptional co-activation
function of Dube3a We investigated one autism-associated protein ATPα and found that it can be ubiquitinated in a Dube3a
dependent manner We also found that Dube3a mutants have significantly less filamentous actin than wild type larvae
consistent with the identification of actin targets regulated by Dube3a The identification of UBE3A targets is the first step in
unraveling the molecular etiology of AS and duplication 15q autism
Title Discrimination training reduces high rate social approach behaviors in Angelman syndrome proof of principle
Journal Res Dev Disabil
Authors Heald M Allen D Villa D Oliver C
Cerebra Centre for Neurodevelopmental Disorders School of Psychology University of Birmingham Edgbaston B15 2TT
UK mxo988bhamacuk
Abstract
This proof of principle study was designed to evaluate whether excessively high rates of social approach behaviors in children
with Angelman syndrome (AS) can be modified using a multiple schedule design Four children with AS were exposed to a
multiple schedule arrangement in which social reinforcement and extinction cued using a novel stimulus were alternated
Twenty-five to 35 discrimination training sessions were conducted and levels of approach behaviors were measured before
and after the discrimination training for two children All four participants evidenced discrimination between conditions of
reinforcement and extinction after 16-20 teaching sessions as indicated by lower rates of social approach behaviors in the
presence of the S(Δ) for extinction Reversal effects for the two children for whom this design was implemented were evident
The results demonstrate that after repeated training the use of a novel stimulus can serve as a cue for children with AS to
discriminate adult availability This is a potentially effective component of a broader intervention strategy but highlights the
need for sustained teaching procedures within this population
Title The Angelman syndrome protein Ube3aE6AP is required for Golgi acidification and surface protein sialylation
Journal J Neurosci
Authors Condon KH Ho J Robinson CG Hanus C Ehlers MD
Department of Neurobiology Duke University Medical Center Durham North Carolina 27710 USA
Abstract
Angelman syndrome (AS) is a severe disorder of postnatal brain development caused by neuron-specific loss of the HECT
(homologous to E6AP carboxy terminus) domain E3 ubiquitin ligase Ube3aE6AP The cellular role of Ube3a remains
enigmatic despite recent descriptions of synaptic and behavioral deficits in AS mouse models Although neuron-specific
imprinting is thought to limit the disease to the brain Ube3a is expressed ubiquitously suggesting a broader role in cellular
function In the current study we demonstrate a profound structural disruption and cisternal swelling of the Golgi apparatus
(GA) in the cortex of AS (UBE3A(m-p+)) mice In Ube3a knockdown cell lines and UBE3A(m-p+) cortical neurons the GA is
severely under-acidified leading to osmotic swelling Both in vitro and in vivo the loss of Ube3a and corresponding elevated
pH of the GA is associated with a marked reduction in protein sialylation a process highly dependent on intralumenal Golgi
pH Altered ion homeostasis of the GA may provide a common cellular pathophysiology underlying the diverse plasticity and
neurodevelopmental deficits associated with AS
10
A Grandmother finds a solution for her granddaughter and all of our kids with Angelman Syndrome
By Lois Carroll
When my growing granddaughter who has AS couldnt be fitted with large enough bibs I took out my sewing machine to
solve the problem I showed the resulting smock to friends and my project Sophies Smocks named after my granddaughter
was born so that many kids with AS could have a free smock
I buy new and gently used turtlenecks and trim Supporters donate their time to help and their money for postage and
materials to keep the project ongoing All the smocks are FREE for individuals with AS I have child size SMALL to adult XL
They are available to others for a donation to cover at least the postage to keep the project going
To get a smock all you have to do is ask by emailing smockscoxnet Give me your childs shirt size plus a name and
mailing address including zip Ill send one as soon as I can Theres no catch and no obligation I mail around the world and
free means free You can check it out at my website httploiscarrollbookscomindexSShtm
Thank you
Grandma Lois
Sophies Smocks
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
Clinical Trial of Low Glycemic Index Treatment proves effective for reducing seizures by 80 ndash 90
Dr Thibert and Dr Elizabeth Thiele (both are members of the Scientific Advisory board for the Angelman Syndrome
Foundation) were able to launch a clinical study to determine the efficacy of the Low Glycemic Index Treatment in
reducing seizures in individuals with Angelman Syndrome In July 2012 the results were in and published in
Epilepsia and in the Angelman Syndrome Foundation newsletter
Epilepsia link httponlinelibrarywileycomdoi101111j1528-1167201203537xabstract
PubMed link httpwwwncbinlmnihgovpubmed22779920
You can read my interview with Dr Thibert on my blog wwwMeetTheFamiliesofASblogspotcom
11
NEW DEVELOPMENTS AT THE ANGELMAN SYNDROME FOUNDATION
Angelman Syndrome Foundation Invests $125 Million in AS ResearchDue to your support the Angelman Syndrome Foundation is able to award more than $125 million in grants for AS research this current grant cycle This yearrsquos funded research will contribute to all future AS preclinical and clinical trials helping move AS research closer to developing treatments for individuals with AS while furthering the research communityrsquos understanding of the complexities of AS Thanks to you this yearrsquos funded research will seek to define the optimal window for potential treatment further understanding of varying UBE3A gene mutations and deletions and determine if a current FDA-approved drug is a viable treatment in an AS mouse model
ASF Biennial Conference Your Ultimate AS ResourceThe Angelman Syndrome Foundationrsquos 2013 Biennial Conference Championing Progress will be held July 23-26 at the Walt Disney World Swan amp Dolphin resort in Orlando Florida As a central resource for your familyrsquos unique needs and those of your loved one with AS the Conference addresses all aspects of living with AS and provides the opportunity to network and learn from a variety of experts and keynote speakers attend breakout sessions and participate in collaborative opportunities with other families
iPads For ASTo help individuals with AS overcome some of the challenges associated with communication the Angelman Syndrome Foundation has launched the iPads For AS program which provides Applereg iPadsreg for up to 100 individuals who qualify for the program Requirements for
participation include working with a speech pathologist and conducting quarterly assessments among others
ASF Honors Your InvestmentDue to your support and that of more than 7000 volunteers during the last 21 years the Angelman Syndrome Foundation has been able to
bull Providemorethan250000individuals with information support and connections to resources
bull Raisemorethan$125million to fund research and provide direct support to individuals affected by AS
bull Grantmorethan$58millionto more than 70 research endeavors to support a diverse set of research projects
bull Holdmorethan186individualwalks in 42 cities across the country that have been attended by more than 52000 individuals
The Angelman Syndrome Foundation is honored to serve as a resource to the AS community and welcomes any individual touched by AS to contact the organization
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Thank you for your supportThe 2013 Angelman Syndrome Foundation National Walk boasted record participation with more than 11700 individuals who to date have raised more than $1 million towards the $11 million fundraising goal Fundraising continues through September 30 The Angelman Syndrome Foundation is deeply grateful for the time energy and support that you and the AS community invested to raise these funds that provide direct support to individuals with AS and their families through programs resources and networking opportunities and that fund research that will help lead to a cure for AS
The Power of Cooking
Angelman syndrome ketogenic diets and LGIT
By Sybille Kraft Bellamy
One of the best ways to naturally help our angels is by giving them a
nutritious healthy diet
Our angels are fragile and very sensitive to their environment
Little things minor changes can trigger dramatic consequences
Each child is unique each parent is special
We have to rediscover the power of food
Therapeutic diets like ketogenic diets have been used for years to help
control epilepsy Today the LGIT (Low Glycemic Index Treatment) is
one of the easiest diets to give to our angels It is one of the weapons
we can use to protect them from the multiple risks they face Seizures
are a major and common risk for our angels
The LGIT helps balance and reinforce the energy they need to keep
them happy healthy and at full cognitive capability
The modification of your childrsquos diet can be done one step at a time
Small changes can lead to big improvements
This is a unique opportunity for you MOM and DAD to directly affect
your childrsquos health and quality of life
There is nothing more terrible than to feel helpless when your child is
sick Our Angelrsquos challenges are numerous and it is proven that a
special diet can help avoid many of their complications
The medical community is embracing this form of treatment to remedy
many disorders worldwide The Angelman community is hard at work to
bring awareness of this treatment to our families Resources such as
ldquoAngleman Syndrome Dietrdquo on Facebook and The Charlie Foundation
can provide information and support to help you start taking control of
your childrsquos diet health and wellbeing
LGIT Testimonial - Jay and Joel are my 26 year old identical twin sons who both have Angelman Syndrome
Seizures have always been a huge problem for them at one point they were both having over 250 grandmals a day
and spent almost a year in the hospital trying to get them controlled Doctors at that time only gave them a 1
chance to survive Now at age 26 Joelrsquos seizures are well controlled with meds but Jayrsquos have never been controlled
In March we started the LGIT after talking to his Dr and getting a lot of support and advice from Sybille Since
starting the diet we have seen a huge decrease in the amount and severity of Jayrsquos seizures Before the diet he
would have 10-20 seizures a week and need a rescue med 3x a week and now he may have only 4-5 seizures a
month Prior to starting the LGIT Jayrsquos seizures were very intense grandmals where he would stop breathing and turn
blue each time and he would have several in a row we have not seen him turn blue or stop breathing since the diet I
believe the diet is helping him tremendously and he is much more alert and vocal Their neurologist has begun
weaning Joel off of one of his seizure meds because of the side effects and we have now started Joel on the LGIT
diet also and he too is acting more alert and vocal (and no seizures) - Lisa Truax-Murphy
Recipes can be found on
Facebookcomangelmansyndromediet
13
LGIT Testimonial - Anna had a terrible start She could not drink and because of this she was hospitalized 3 weeks
after her birth They soon discovered she had epilepsy and here in The Netherlands I understood almost all babies with
epilepsy get Phenobarbital Because I was not satisfied with the care Anna received we decided to move to another
hospital So almost 6 months later the new neurologist advised us to stop with Phenobarbital and start with Keppra
And it was a good choice When Anna was 1 year old she finally got diagnosed Angelman Syndrome With Keppra
we succeeded to keep her seizure free for almost 2 years When the seizures came back we started with Rivotril
(Clonazepam) in addition to the Keppra and it helped her for 2 years but then the seizures came back again Her
neurologist advised us to start with a third drug but we didnrsquot want to give her more medicine At the same time I read
the research article about the LGIT and I got enthusiastic about it I had to give it a try Annarsquos neurologist was a bit
suspicious but I insisted so he helped us The first month was terrible Anna got more seizures and was very tired I was
so afraid I was only complicating her life instead of helping her I was so down that I just wanted to stop the diet But
after a long phone call with Sybille Kraft I decided to continue the diet for just a few more weeks And Irsquom so happy we
did this A week later Annarsquos absences were gone She started to walk again became more alert And the best thing
of all was that for the first time in her life she slept for 6 hours without waking This was so amazing
The LGIT made a big change in Annarsquos life She is able to concentrate shersquos more active and sleeps better Its just
amazing At first the diet appears very complicated This is because we are so used to eating a lot of bread sugar and
processed food If you just use fresh vegetables meat eggs and fish you can easily cook something very healthy tasty
and LGIT When travelling we always take our own food with us for Anna and there is always something on the menu in
a restaurant that she can eat
-Violeta Giurgi
Summer Time is a great time to find your local farmerrsquos market and buy fresh fruits amp veggies
14
Angels in Action
Angels in Action is where you will read about the inspiring stories of the success in gained skills and abilities by our loved ones with
Angelman Syndrome Written by the families we join in celebrating the abilities no matter how big or small We believe it is
important to inspire everyone with these real stories of our endearingly termed lsquoAngels in Actionrsquo
Possibilities abound when we have a vision By Karen VanPuyenbroeck of Illinois
Angel Mom to Krista 10 years old AS UPD
When I was asked by our Editor In Chief Lizzie Sordia to write a piece about Kristas abilities for this section I asked myself what
were my burning questions about how to develop abilities in my daughter and for me I just really wanted to figure out how I could
teach her to speak I knew that there had to be a way and I obsessed on this topic for hours days months and yes even years It
took me quite a while to find an angel with functional speech but I found him and once I found him I knew that it was possible for my
angel to speak too I wanted to know how it was possible And the big lesson that I learned from Richies mom Dawn was that they
first believed that he could develop this ability and so did his therapists From that point on I developed my own belief and eliminated
therapists who did not support my vision for my daughter of verbal communication and unfortunately for me this meant that Krista
received no speech therapy for a time and mom became her therapist with the help of a program called NACD Through NACD I
learned that an unskilled parent who was willing to learn how to implement therapy who would spend many hours per week
implementing therapy and who could maintain the vision for their child was preferable to a highly skilled professional therapist who
could only spend an hour per week with my child and who did not share my vision
Today at age 10 Krista speaks over a hundred words and has quite a few phrases her speech has been referred to as functional
by her school and by the last two speech therapists who have evaluated her Kristas favorite and most consistent phrase over the
years has been I love you and if those were the only words that I had ever heard spoken from the lips of my angel all of the energy
that we have put into her healing program would have been worth it and I would do hundreds of times over again
Heres how we did it
1 We cultivated belief I have to credit my husband Steve for this This angel Daddy always knew that his girl was A-ok And to my
kids Nana who said simply if you want her to speak we will teach her to speak Because Nana has adult twin boys with autism as
a result of Urea Cycle Disorder I knew that she knew exactly what she was talking about and so I believed her Kristas older
siblings played an essential role by always speaking to her as if she could speak back
2 I tossed out any lsquoDebbie Downerrsquo therapists or health care providers in her life at times this meant that she did not receive
certain therapies at all but again I had come to understand that it was better that I work with her with all of my love support and
belief than it was for a professional who didnt see things that way
3 I only shared my vision for my daughter with people who believed in her ability well meaning friends and relatives may want to
help you accept your childs limitations I finally came to understand that this was their position and realized that pushing the issue
was only baiting them into an oh you poor dear its sad that you have not come to terms with your childs disability type of lecture
4 Gluten and Casein free diet baby Thanks to a miraculous accident I bought the wrong Autism book at Barnes and Noble called
Unraveling The Mystery of Autism by author Karyn Seroussi This started us on an amazing journey that lead us to the wonderful
discovery that by removing these offending proteins my daughters health would improve drastically and as a result of her improved
health status Krista gained many wonderful skills much too many to mention here but improved speech was definitely a biggie
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
15
5 At 5 orsquoclock sharp every morning Krista liked to crawl out of my bed and venture off to her play room
where shed play with blocks and just adored taking things apart During this play time I would get down
on the floor with her grab a block put it near my mouth and just repeatedly say Mama The toy was
used to bring her attention to my mouth a technique that I learned while researching the Son-Rise
program This developed into me singing Mama over and over again and pretty soon my girl was
saying Mama so Id check in with her daily to make sure that she still had Mama down pat and I then
moved on to Dada and Baba etc Some words came very easily and some did not but I remained
grateful for every word or approximation that this angel girl could produce never giving a second
thought to the ones that were really tough for her Always referring to her speech as developing
6 Through Glenn Domans book What to do About Your Brain Injured Child (Brain injury in this context
referring to any condition affecting your childs cognitive ability) I learned that I should listen out for
different sounds that she would make for example many babies will babble mmm You catch the child
saying mmm and you sit him down and say I have noticed that you can say mmm Now we will take
that mmm sound and it will mean Mama In this scenario every time you hear the child babble
mmm you will quickly reinforce this by saying something like You said Mama I love it when you say
Mama You called me and I came My Krista is very high intensity and responds very well to intense
animated and even loud praise so this method has proven very effective for us
7 Good probiotics to clear up yeast in the gut and to help to heal Kristas gut was essential
8 Krista gained even more speech while participating in the Angelman Syndrome Supplement Trial
9 We used MB12 shots with much success in Krista learning to string together longer sentences
10 Lastly in recent months Lizzie talked me into supplementing with a fish oil that is specifically
formulated to aid in speech development We saw great results I learned quite a bit about therapeutic
dosing of fish oil at Integrative Nutrition where Dr Sears of The Zone Diet was a guest lecturer and huge
advocate for this approach From this I learned that Krista needed about three times the amount of fish
oil than what is recommended for general health in order to be able to see an increase in ability for
speech
My determination for Krista to learn to speak started when she was a mere baby she is now 10 and Im
still learning and remaining open to safe and effective ways of helping her in the area of speech as well
as many other areas of her life that will help her to become an independent young lady
If you are reading this and feeling a bit bummed out that you were not as convinced about the speech
thing as I was or you feel like oh had I only been that determined maybe I would be hearing my sweet
Angels voice Let me say this DO NOT feel that way There was something that seemed out of
reach for your Angel that you were able to help him or her accomplish that I may have not been able to
help my daughter to accomplish We only have so much energy to expend in a day I chose to expend it
on speech Another parent might be more consumed by helping their child to gain the ability to walk
independently maybe you always envisioned your angel riding a bike or reading whatever it is I hope
our story encourages you to cultivate a belief and unwavering faith that will lead to the achievement of
yours and more importantly your Angels dreams
Written by
Karen VanPuyenbroeck
Angelman Today Magazine
Associate Editor
KarenAngelmantodayGmailcom
Karen is a certified Health Coach providing Nutrition Counseling services to the special needs
community with a focus on Angelman syndrome To learn more about her services visit her website at wwwAngelFoodsbyKarencom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
16
17
Social Security Disability Benefits and Angelman Syndrome Angelman Syndrome (AS) is a complex genetic disorder characterized by developmental delays and neurological
problems Children with AS often require around-the-clock care for their entire lives
Parents of children who have AS often dedicate extra time energy and even money to provide a high quality of life for
their child Assistive technology supportive care and specialty medical treatments rack up expenses quickly Parents
may even find it necessary to take time away from work to be with their child The resulting loss of income and lack of
medical insurances can be financially devastating
If your child has been diagnosed with Angelman Syndrome he or she may qualify for financial assistance in the form of
Social Security Disability (SSD) benefits SSD payments can be used to cover your childrsquos expensesmdashincluding anything
from food to supportive services to medical bills
The following article will give you a basic overview of the options available to your family and will provide you with the
information needed to begin the SSD application process
Compassionate Allowances and Angelman Syndrome
Typically the SSD application process can take months or even years to complete Fortunately the SSA recognizes that
individuals with severely disabling conditions may not be able to wait that long to receive disability benefits For this
reason the SSA offers Compassionate Allowances (CAL) processing to individuals with certain disabilities Applicants
who have been diagnosed with conditions covered by the CAL program can receive SSD benefits in as little as 10 days
Angelman Syndrome is one of approximately 200 conditions that qualify for CAL processing You will not need to fill out
additional paperwork or request to receive CAL processing The SSA will evaluate your childrsquos claim and expedite it
accordingly
Social Security Disability Insurance and Supplemental Security Income
The SSA offers disability benefits through two separate programsmdashSSDI and SSI Each of these programs has very
specific technical eligibility requirements
SSDI stands for Social Security Disability Insurance and provides benefits to disabled workers Eligibility for SSDI is
dependent on an applicantrsquos employment history as well as the amount of taxes he or she has paid into the system
Children and young adults donrsquot often qualify for SSDI on their own record because they havenrsquot had the chance to work
and pay into the program
It is important to note that if the childrsquos parent is qualified for SSDI or retirement benefits the child may qualify for
dependent benefits based on a parent or guardianrsquos earnings record If your child is technically an adult but was
diagnosed with Angelman Syndrome before age 22 he or she is considered to be an adult child Adult children may also
qualify for a childrsquos dependent benefits
SSI stands for Supplemental Security Income SSI is a needs-based program that provides financial assistance to elderly
or disabled individuals who earn very little income Eligibility for SSI is based on financial need not employment history
To qualify applicants cannot exceed specific financial limitations set in place by the SSA
In the case of a child a portion of his or her parentrsquos income will be ldquodeemedrdquo This means that the SSA will evaluate the
deemed income to determine whether or not the child meets the SSI financial eligibility requirements Deeming occurs
for children who are under the age of 18 unmarried and still live with a parent or guardian Parentsrsquo earned income
unearned income and financial resources will all be taken into consideration
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
18
Income and resources that will not be deemed includes the following
Welfare payments
Public Income Maintenance (PIM) including Temporary Assistance to Needy Families (TANF) and VA pension for
veterans
Food stamps
Disaster assistance
Foster care payments
Tax refunds on real property (property that includes land andor buildings)
Home grown produce used for personal consumption
The SSA also makes the following allowances for living expensesmdashmeaning that the following will be deducted from the
amount of income deemed to your child
$365 a month for each additional child that you support
$710 a month for a single parent or $1066 for two parents
It is important to note that this amount will not be subtracted for parents or children who already receive public assistance
Once your child turns 18 SSI payments will be based on his or her own earnings record
Medical Requirements
In addition to the previously mentioned technical requirements your child must also meet very specific medical
requirements to qualify for disability benefits The requirements can be found in a publication known as the ldquoblue bookrdquo
The SSArsquos blue book contains listings for potentially disabling conditions as well as the specific medical criteria an
applicant must meet to qualify under each condition
The SSA has separate listings for adults and children The specific medical requirement that your child will have to meet is
dependent on his or her age Your child will have to meet one or more of the following blue book listings to qualify for
disability benefits
Section 1205mdashMental Retardation (Adult)
Section 11205 ndash Mental retardation (Child)
Section 11008 B ndash Catastrophic Congenital Disorder (Child)
You can access these specific listings on the SSArsquos website
Preparing for the Social Security Disability Application Process
Even though your child qualifies for the Compassionate Allowances program you will still have to provide thorough medical
evidence that proves the extent of your childrsquos condition Medical evidence should include records of your childrsquos diagnosis
treatments response to treatments hospitalization records and medical test results You should also collect statements
from professional adults that interact with your child on a daily basis This can include doctors teachers and therapists
These statements should provide details about your childrsquos limitations and abilities
The SSA may also ask for evidence of the following
Your childrsquos inability to perform age appropriate functions
IQ test results showing a marked developmental deficit based on age
Other developmental delays and impairments in physical and mental functioning again based on age
You should collect these documents prior to beginning the application process to prevent any delays in the processing of
your childrsquos claim
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
19
Starting Your Application
The SSD application procedures will differ depending on whether you are filing for SSI benefits or SSDI dependent
benefits
If you are interested in learning more about dependent benefits you should call the SSArsquos main phone line (1-800-
772-1213) or contact the representative who handles the eligible parentrsquos claim
To apply for SSI benefits on behalf of a child you will be asked to complete two forms the ldquoApplication for
Supplemental Security Incomerdquo and the ldquoChild Disability Reportrdquo Currently only the child disability report can be
completed online You will have to schedule an appointment with your local Social Security office to complete the
application for SSI
If you are applying for SSI on behalf of an adult you will have to complete the same process with an ldquoAdult
Disability Reportrdquo rather than a child disability report
It is important that you realize how overwhelming and complicated the SSD application process may become In
fact many initial applications are denied and require the applicant to request an appeal hearing If your childrsquos
application is denied do not give up The key to receiving disability benefits it to be persistent in your efforts
For more information about applying for disability benefits visit Social Security Disability Help (wwwdisability-
benefits-helporg) or contact Molly Clarke at macssd-helporg
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
20
READ MORE ABOUT OUR ACTIVITIES AND BROWSE THE
INFORMATION PAGES HERE
httpangelmannetworkwordpresscom
Our successful International Angelman Day celebrations
held across the country
httpangelmannetworkwordpresscomlearn-
aboutwhat-is-the-angelman-network
For up to date info on Therapies
httpangelmannetworkwordpresscomtherapy-for-as
For information and ideas regarding Communication
httpangelmannetworkwordpresscomeducation-and-
communication
For general information on Epilepsy in AS
httpangelmannetworkwordpresscomangelman-
syndromeangelman-syndrome-epilepsy
The Angelman Network was
established in New Zealand as a
Charitable Trust in 2011 (CC46746)
We seek to connect and support
people impacted by Angelman
Syndrome
++++++++++++++
We are New Zealandrsquos only organisation
solely dedicated to promoting
awareness for Angelman Syndrome
and to actively promote and support
the progress being made with world-
wide research on AS
++++++++++++++
Our Information Pages are
regularly updated to include
newimproved ideas and links as
these become available
+++++++++++++++
Our aim is to offer an active and
accurate website which will become
a helpful resource for families and
provide useful and reliable information
for medical and educational
professionals both in
NZ and around the world
WE ARE ON FACEBOOK AT
Non-profit page
httpswwwfacebookcomtheangelmann
etwork
Informal group
httpswwwfacebookcomgroups10468
6089609200
Our ACTION ANGEL TEAM is an informal fundraising group who regularly raise funds and awareness for Angelman Syndrome by running in local races wearing their signature white wings
22
Shea teaches himself to read By Carol Pulver of Florida
Angel Mom to Shea 22 years old AS Del +
Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery
followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done
shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful
Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding
and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a
speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him
to sustain a suck for more than a few seconds
At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory
issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the
milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was
just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately
schedule a neurology consultation get an EEG and do blood work to check for abnormalities
Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family
pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with
the neurologist and the blood work we received some answers
I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old
The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He
told us that our son would never be able to walk to talk or to function as our other children and that we might as well
ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I
sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless
We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do
everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but
the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear
I want to share some of the things wersquove learned along this journey
1 Always trust your intuition No one knows your Angel(s) as well as you do
2 Never put a limit on your Angelrsquos abilities
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
23
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
Together we are all on a journey A journey that is the same and different
There is no right way or wrong We span across the globe
There is so much we can learn from one another We can share our experiences
of laughter joy failure and triumph Together our global community
will become connected like never before And we will make great progress Improve the lives of our families
And maybehellip just maybehellip Take part in the ultimate solution
In finding the cure
~Lizzie Sordia Editor in Chief
Our Journey Begins Here
4
Contributors
Karen VanPuyenbroek Associate Editor
Isabel Orellana
Marc Bissonnette
Sybille Kraft
Bellamy
A Big Thank You to our contributors for helping to make this magazine a reality Your talent passion and love for our kids is what Angelman Today is all about -Lizzie Sordia Editor ndash in - Chief
Angelman Today
Edwin Weeber PhD Professor Dept of Molecular Pharmacology and Physiology Chief Scientific Officer USF Health Byrd Alzheimers Institute Director Neurobiology of Learning and Memory Laboratory University of South Florida Healths
Morsani College of Medicine
Charles A Williams MD Professor of Pediatrics and
Genetics Division of Genetics and Metabolism Department
of Pediatrics University of Florida
5
Conducting blood testing to diagnose
Angelman syndrome (AS) can be a
complicated matter Here I summarize the
different genetic causes of AS and provide
general guidelines about how to use genetic
tests to confirm the diagnosis of AS First let
us look at the genetic mechanisms that cause
AS
A chromosome 15 pair is illustrated for each class depicted but the other chromosomes are not shown The P
indicates the maternally-derived chromosome and the M indicates the maternally-derived one The shaded
chromosomes have a paternal pattern of gene functioning while the unshaded chromosomes have a maternal
pattern AS can be caused by either a large chromosome deletion (70 of the time) a disruptive mutations in the
UBE3A gene inherited from the mother (indicated by the X) inheritance from the father of 2 normal number 15
chromosomes (eg paternal uniparental disomy [UPD]) or an imprinting defect (ID) occurring when the
chromosome 15 inherited from the mother has the paternal pattern of gene functioning because of a problem in
the imprinting center (denoted by the small open circle)
In addition to these mechanisms a clinical diagnosis of AS may be given even though the genetic testing is
normal The percentages indicate how common each mechanism occurs
How do we use genetic testing and what is the sequence of testing There are many pathways to diagnosis for
families undergoing testing for AS but the most common testing pathway is summarized here
Understanding Genetic Classes of Angelman Syndrome
Dr Charles Williams
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
6
Welcome To Holland
Welcome To Holland
by
Emily Perl Kingsley
copy1987 by Emily Perl Kingsley All rights reserved Reprinted with permission of the author
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not
shared that unique experience to understand it to imagine how it would feel Its like this
When youre going to have a baby its like planning a fabulous vacation trip - to Italy You buy a bunch of guide
books and make your wonderful plans The Coliseum The Michelangelo David The gondolas in Venice You may
learn some handy phrases in Italian Its all very exciting
After months of eager anticipation the day finally arrives You pack your bags and off you go Several hours later
the plane lands The flight attendant comes in and says Welcome to Holland
Holland you say What do you mean Holland I signed up for Italy Im supposed to be in Italy All my life Ive
dreamed of going to Italy
But theres been a change in the flight plan Theyve landed in Holland and there you must stay
The important thing is that they havent taken you to a horrible disgusting filthy place full of pestilence famine and
disease Its just a different place
So you must go out and buy new guide books And you must learn a whole new language And you will meet a
whole new group of people you would never have met
Itrsquos just a different place Its slower-paced than Italy less flashy than Italy But after youve been there for a while
and you catch your breath you look around and you begin to notice that Holland has windmillsand Holland has
tulips Holland even has Rembrandts
But everyone you know is busy coming and going from Italy and theyre all bragging about what a wonderful time
they had there And for the rest of your life you will say Yes thats where I was supposed to go Thats what I had
planned
And the pain of that will never ever ever ever go away because the loss of that dream is a very very significant
loss
But if you spend your life mourning the fact that you didnt get to Italy you may never be free to enjoy the very
special the very lovely things about Holland
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
7
ldquoThe words of advice I offer newly diagnosed families today starts out a little different than it did a few years ago In the past I might have
suggested parents not jump into researching the syndrome and to ignore the majority of what has been written by experts Today
there is a multitude of valuable information available and it is written by the true experts the parents of the Angelman Syndrome
Community Do your research Read all you can Join the online support groups and ask questions Find local families and meet their
families You are going to see a wide variety of personalities abilities opinions and you are going to feel right at home
Here are a few tried and true words of advice that I still share because they have stood the test of time
1 Never underestimate your child and do not base your expectations on the evaluations of others
2 Your child is your child and unless you are neglecting or endangering your child that does not change because of a diagnosis There
are many people out there who think they know best but a parents instinct and the intimate knowledge they have of their child serves as
the best indicator of what is right and of what needs to be done
3 No matter what the numbers say your child is still one of a kind and always will be A diagnosis is a way of helping you help your child
but it does not define your child or your family Your child has a syndrome The syndrome does not have your child
4 Be a family first Try not to let a diagnosis consume you 247 therapy is not healthy for anyone Love and play are the best gifts you
can give your child and are the best stimulants for growth and development
5 Take care of yourself Take care of your spouse and take care of your other children It is easy to focus on your child with a diagnosis
and not realize you have let other things go We have all tried to be the strong one and prove we can do this but I assure you the earlier
you learn to allow others to help out the easier it will be
6 There will be good days and bad days Your emotions will betray you when you least expect it You will experience the highest and
lowest of emotions and sometimes on the same day You will sweat the small stuff and you will celebrate the small stuff You have
joined a community that will be here for all of this and we will understandrdquo
Brenda Dixon Mississippi
Jonathan - 33yrs AS Del+
ldquoNever accept a doctor telling you that your child lsquowont be able torsquo
Never under estimate you childs potential--our kids love to learn Always
have faith in your gut instinctsMomma (or Daddy) usually knows best
Look forward with faith in the advances and treatments that are on the
horizon but as you struggle (from time to time) in your daily life with an
Angel (and there will be struggles) know that you are not alone--we are
all in this together Dont be afraid to ask questions Support tears
cheers and hugs are just a phone call or Facebook post away Take time
each day to recognize the blessings in your life Enjoy your Angel hugsrdquo
Carol Pulver Florida
Shea Pulver - 22yrs AS Del+
ldquoDont allow anyone even yourself to see a diagnosis instead of a child A child needs a parent more than a therapist or researcher
Yes we need to wear several hats to be good parents - but from your childs point of view he really needs Mommy and Daddy more
than DrTherapistresearcheradvocate - he only has ONE parent or set of parents Sometimes we get so caught up in helping them
that we forget the main point which is to be there physically and emotionally for them From the start concentrate on communication and
functional skills These things cannot wait until theyre older Typical children start learning those things immediately and nobody says
oh wait I dont know how to communicate with you yet - I need to take a class or oh wait youll have to learn to potty train or pull your
pants up and down when youre 15 (and 6 feet tall) its more natural to just hand-over-hand those motions from a very early age and
present communication pictures (or even the objects themselves to choose from) as a matter of course as you go about your day (This
is Dora this is a book - which one would you like)
If it takes years to develop the actual skills its better to start at age 2 and have that skill when theyre 12 then to start at age 12 to teach
skillswhen theyve already got ingrained habits and learned helplessness from having everything done for them Believe my aching
back when I say teaching a child to crawl into his carseat early on will save a lot of wear and tear on your body Kids with special needs
get just as much joy and confidence from doing for themselves as anyone You never know until you try Read Disability is Natural by
Kathie Snow This is common sense advice for parents of special needs kids that they really need to hearrdquo
Lulu Carpenter California
Simon - 23 yrs AS
Words Of
Wisdom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
8
Interested in what research has been published about AS Dr Ed Weeber will tell us how we can search for information and some of the
latest research happening around the globe
How can you get published scientific articles concerning Angelman syndrome research By accessing the free data base
called PubMed (wwwpubmedgov) This valuable resource is developed and maintained by the National Center for
Biotechnology Information (NCBI) at the National Library of Medicine (NLM) and contains more than 20 million references
to scientific articles The search function allows single or multiple terms to narrow the number of ldquohitsrdquo In addition you can
search for authors in order to find all of the publications from a specific researcher Many of these publications are free
and all of them have an abstract to describe the research
A search for the term ldquoAngelman syndromerdquo will reveal 1300 publications with the earliest dating back to 1950 To make
the science a little easier to digest every issue will present a selection of the latest published scientific articles with
Angelman syndrome in the title abstract or key words section of the paper Below are some recent papers that have come
out in the last few months
Title Recurrent fractures as a new skeletal problem in the course of Angelman syndrome
Journal Bone
Authors Rusińska A Dzwonek AB Chlebna-Sokoacuteł D
Department of Pediatric Propedeutics and Metabolic Bone Diseases Medical University of Lodz Poland Maria
Konopnicka Memorial Teaching Hospital No 4 Medical University of Lodz Poland
Abstract
Angelman syndrome is a genetically inherited syndrome with severe retardation of psychomotor development and speech
disturbances usually accompanied by epilepsy typical dysmorphic features and some skeletal symptoms The aim of the
current report is to present new skeletal symptoms which may occur in the course of AS based on a case report of an 8-
year-old girl with confirmed 15q1112 microdeletion and recurrent low-trauma bone fractures According to our knowledge it
is the first report of such skeletal symptoms in patient with a diagnosis of AS
Title Role of the ubiquitin ligase E6APUBE3A in controlling levels of the synaptic protein Arc
Journal Proc Natl Acad Sci U S A
Authors Kuumlhnle S Mothes B Matentzoglu K Scheffner M
Department of Biology and Konstanz Research School Chemical Biology University of Konstanz 78457 Konstanz
Germany
Abstract
Inactivation of the ubiquitin ligase E6 associated protein (E6AP) encoded by the UBE3A gene has been associated with
development of the Angelman syndrome Recently it was reported that in mice loss of E6AP expression results in
increased levels of the synaptic protein Arc and a concomitant impaired synaptic function providing an explanation for
some phenotypic features of Angelman syndrome patients Accordingly E6AP has been shown to negatively regulate
activity-regulated cytoskeleton-associated protein (Arc) and it has been suggested that E6AP targets Arc for ubiquitination
and degradation In our study we provide evidence that Arc is not a direct substrate for E6AP and binds only weakly to
E6AP if at all Furthermore we show that down-regulation of E6AP expression stimulates estradiol-induced transcription
of the Arc gene Thus we propose that Arc protein levels are controlled by E6AP at the transcriptional rather than at the
posttranslational level
Title Proteomic profiling in Drosophila reveals potential Dube3a regulation of the actin cytoskeleton and neuronal
homeostasis
Journal PLoS One
Authors Jensen L Farook MF Reiter LT
Department of Neurology University of Tennessee Health Science Center Memphis Tennessee United States of
America 9
Abstract
The molecular defects associated with Angelman syndrome (AS) and 15q duplication autism are directly correlated to
expression levels of the E3 ubiquitin ligase protein UBE3A Here we used Drosophila melanogaster to screen for the targets
of this ubiquitin ligase under conditions of both decreased (as in AS) or increased (as in dup(15)) levels of the fly Dube3a or
human UBE3A proteins Using liquid phase isoelectric focusing of proteins from whole fly head extracts we identified a total of
50 proteins that show changes in protein and in some cases transcriptional levels when Dube3a fluctuates We analyzed
head extracts from cytoplasmic nuclear and membrane fractions for Dube3a regulated proteins Our results indicate that
Dube3a is involved in the regulation of cellular functions related to ATP synthesismetabolism actin cytoskeletal integrity
both catabolism and carbohydrate metabolism as well as nervous system development and function Sixty-two percent of the
proteins were gt50 identical to homologous human proteins and 8 have previously be shown to be ubiquitinated in the fly
nervous system Eight proteins may be regulated by Dube3a at the transcript level through the transcriptional co-activation
function of Dube3a We investigated one autism-associated protein ATPα and found that it can be ubiquitinated in a Dube3a
dependent manner We also found that Dube3a mutants have significantly less filamentous actin than wild type larvae
consistent with the identification of actin targets regulated by Dube3a The identification of UBE3A targets is the first step in
unraveling the molecular etiology of AS and duplication 15q autism
Title Discrimination training reduces high rate social approach behaviors in Angelman syndrome proof of principle
Journal Res Dev Disabil
Authors Heald M Allen D Villa D Oliver C
Cerebra Centre for Neurodevelopmental Disorders School of Psychology University of Birmingham Edgbaston B15 2TT
UK mxo988bhamacuk
Abstract
This proof of principle study was designed to evaluate whether excessively high rates of social approach behaviors in children
with Angelman syndrome (AS) can be modified using a multiple schedule design Four children with AS were exposed to a
multiple schedule arrangement in which social reinforcement and extinction cued using a novel stimulus were alternated
Twenty-five to 35 discrimination training sessions were conducted and levels of approach behaviors were measured before
and after the discrimination training for two children All four participants evidenced discrimination between conditions of
reinforcement and extinction after 16-20 teaching sessions as indicated by lower rates of social approach behaviors in the
presence of the S(Δ) for extinction Reversal effects for the two children for whom this design was implemented were evident
The results demonstrate that after repeated training the use of a novel stimulus can serve as a cue for children with AS to
discriminate adult availability This is a potentially effective component of a broader intervention strategy but highlights the
need for sustained teaching procedures within this population
Title The Angelman syndrome protein Ube3aE6AP is required for Golgi acidification and surface protein sialylation
Journal J Neurosci
Authors Condon KH Ho J Robinson CG Hanus C Ehlers MD
Department of Neurobiology Duke University Medical Center Durham North Carolina 27710 USA
Abstract
Angelman syndrome (AS) is a severe disorder of postnatal brain development caused by neuron-specific loss of the HECT
(homologous to E6AP carboxy terminus) domain E3 ubiquitin ligase Ube3aE6AP The cellular role of Ube3a remains
enigmatic despite recent descriptions of synaptic and behavioral deficits in AS mouse models Although neuron-specific
imprinting is thought to limit the disease to the brain Ube3a is expressed ubiquitously suggesting a broader role in cellular
function In the current study we demonstrate a profound structural disruption and cisternal swelling of the Golgi apparatus
(GA) in the cortex of AS (UBE3A(m-p+)) mice In Ube3a knockdown cell lines and UBE3A(m-p+) cortical neurons the GA is
severely under-acidified leading to osmotic swelling Both in vitro and in vivo the loss of Ube3a and corresponding elevated
pH of the GA is associated with a marked reduction in protein sialylation a process highly dependent on intralumenal Golgi
pH Altered ion homeostasis of the GA may provide a common cellular pathophysiology underlying the diverse plasticity and
neurodevelopmental deficits associated with AS
10
A Grandmother finds a solution for her granddaughter and all of our kids with Angelman Syndrome
By Lois Carroll
When my growing granddaughter who has AS couldnt be fitted with large enough bibs I took out my sewing machine to
solve the problem I showed the resulting smock to friends and my project Sophies Smocks named after my granddaughter
was born so that many kids with AS could have a free smock
I buy new and gently used turtlenecks and trim Supporters donate their time to help and their money for postage and
materials to keep the project ongoing All the smocks are FREE for individuals with AS I have child size SMALL to adult XL
They are available to others for a donation to cover at least the postage to keep the project going
To get a smock all you have to do is ask by emailing smockscoxnet Give me your childs shirt size plus a name and
mailing address including zip Ill send one as soon as I can Theres no catch and no obligation I mail around the world and
free means free You can check it out at my website httploiscarrollbookscomindexSShtm
Thank you
Grandma Lois
Sophies Smocks
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
Clinical Trial of Low Glycemic Index Treatment proves effective for reducing seizures by 80 ndash 90
Dr Thibert and Dr Elizabeth Thiele (both are members of the Scientific Advisory board for the Angelman Syndrome
Foundation) were able to launch a clinical study to determine the efficacy of the Low Glycemic Index Treatment in
reducing seizures in individuals with Angelman Syndrome In July 2012 the results were in and published in
Epilepsia and in the Angelman Syndrome Foundation newsletter
Epilepsia link httponlinelibrarywileycomdoi101111j1528-1167201203537xabstract
PubMed link httpwwwncbinlmnihgovpubmed22779920
You can read my interview with Dr Thibert on my blog wwwMeetTheFamiliesofASblogspotcom
11
NEW DEVELOPMENTS AT THE ANGELMAN SYNDROME FOUNDATION
Angelman Syndrome Foundation Invests $125 Million in AS ResearchDue to your support the Angelman Syndrome Foundation is able to award more than $125 million in grants for AS research this current grant cycle This yearrsquos funded research will contribute to all future AS preclinical and clinical trials helping move AS research closer to developing treatments for individuals with AS while furthering the research communityrsquos understanding of the complexities of AS Thanks to you this yearrsquos funded research will seek to define the optimal window for potential treatment further understanding of varying UBE3A gene mutations and deletions and determine if a current FDA-approved drug is a viable treatment in an AS mouse model
ASF Biennial Conference Your Ultimate AS ResourceThe Angelman Syndrome Foundationrsquos 2013 Biennial Conference Championing Progress will be held July 23-26 at the Walt Disney World Swan amp Dolphin resort in Orlando Florida As a central resource for your familyrsquos unique needs and those of your loved one with AS the Conference addresses all aspects of living with AS and provides the opportunity to network and learn from a variety of experts and keynote speakers attend breakout sessions and participate in collaborative opportunities with other families
iPads For ASTo help individuals with AS overcome some of the challenges associated with communication the Angelman Syndrome Foundation has launched the iPads For AS program which provides Applereg iPadsreg for up to 100 individuals who qualify for the program Requirements for
participation include working with a speech pathologist and conducting quarterly assessments among others
ASF Honors Your InvestmentDue to your support and that of more than 7000 volunteers during the last 21 years the Angelman Syndrome Foundation has been able to
bull Providemorethan250000individuals with information support and connections to resources
bull Raisemorethan$125million to fund research and provide direct support to individuals affected by AS
bull Grantmorethan$58millionto more than 70 research endeavors to support a diverse set of research projects
bull Holdmorethan186individualwalks in 42 cities across the country that have been attended by more than 52000 individuals
The Angelman Syndrome Foundation is honored to serve as a resource to the AS community and welcomes any individual touched by AS to contact the organization
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Thank you for your supportThe 2013 Angelman Syndrome Foundation National Walk boasted record participation with more than 11700 individuals who to date have raised more than $1 million towards the $11 million fundraising goal Fundraising continues through September 30 The Angelman Syndrome Foundation is deeply grateful for the time energy and support that you and the AS community invested to raise these funds that provide direct support to individuals with AS and their families through programs resources and networking opportunities and that fund research that will help lead to a cure for AS
The Power of Cooking
Angelman syndrome ketogenic diets and LGIT
By Sybille Kraft Bellamy
One of the best ways to naturally help our angels is by giving them a
nutritious healthy diet
Our angels are fragile and very sensitive to their environment
Little things minor changes can trigger dramatic consequences
Each child is unique each parent is special
We have to rediscover the power of food
Therapeutic diets like ketogenic diets have been used for years to help
control epilepsy Today the LGIT (Low Glycemic Index Treatment) is
one of the easiest diets to give to our angels It is one of the weapons
we can use to protect them from the multiple risks they face Seizures
are a major and common risk for our angels
The LGIT helps balance and reinforce the energy they need to keep
them happy healthy and at full cognitive capability
The modification of your childrsquos diet can be done one step at a time
Small changes can lead to big improvements
This is a unique opportunity for you MOM and DAD to directly affect
your childrsquos health and quality of life
There is nothing more terrible than to feel helpless when your child is
sick Our Angelrsquos challenges are numerous and it is proven that a
special diet can help avoid many of their complications
The medical community is embracing this form of treatment to remedy
many disorders worldwide The Angelman community is hard at work to
bring awareness of this treatment to our families Resources such as
ldquoAngleman Syndrome Dietrdquo on Facebook and The Charlie Foundation
can provide information and support to help you start taking control of
your childrsquos diet health and wellbeing
LGIT Testimonial - Jay and Joel are my 26 year old identical twin sons who both have Angelman Syndrome
Seizures have always been a huge problem for them at one point they were both having over 250 grandmals a day
and spent almost a year in the hospital trying to get them controlled Doctors at that time only gave them a 1
chance to survive Now at age 26 Joelrsquos seizures are well controlled with meds but Jayrsquos have never been controlled
In March we started the LGIT after talking to his Dr and getting a lot of support and advice from Sybille Since
starting the diet we have seen a huge decrease in the amount and severity of Jayrsquos seizures Before the diet he
would have 10-20 seizures a week and need a rescue med 3x a week and now he may have only 4-5 seizures a
month Prior to starting the LGIT Jayrsquos seizures were very intense grandmals where he would stop breathing and turn
blue each time and he would have several in a row we have not seen him turn blue or stop breathing since the diet I
believe the diet is helping him tremendously and he is much more alert and vocal Their neurologist has begun
weaning Joel off of one of his seizure meds because of the side effects and we have now started Joel on the LGIT
diet also and he too is acting more alert and vocal (and no seizures) - Lisa Truax-Murphy
Recipes can be found on
Facebookcomangelmansyndromediet
13
LGIT Testimonial - Anna had a terrible start She could not drink and because of this she was hospitalized 3 weeks
after her birth They soon discovered she had epilepsy and here in The Netherlands I understood almost all babies with
epilepsy get Phenobarbital Because I was not satisfied with the care Anna received we decided to move to another
hospital So almost 6 months later the new neurologist advised us to stop with Phenobarbital and start with Keppra
And it was a good choice When Anna was 1 year old she finally got diagnosed Angelman Syndrome With Keppra
we succeeded to keep her seizure free for almost 2 years When the seizures came back we started with Rivotril
(Clonazepam) in addition to the Keppra and it helped her for 2 years but then the seizures came back again Her
neurologist advised us to start with a third drug but we didnrsquot want to give her more medicine At the same time I read
the research article about the LGIT and I got enthusiastic about it I had to give it a try Annarsquos neurologist was a bit
suspicious but I insisted so he helped us The first month was terrible Anna got more seizures and was very tired I was
so afraid I was only complicating her life instead of helping her I was so down that I just wanted to stop the diet But
after a long phone call with Sybille Kraft I decided to continue the diet for just a few more weeks And Irsquom so happy we
did this A week later Annarsquos absences were gone She started to walk again became more alert And the best thing
of all was that for the first time in her life she slept for 6 hours without waking This was so amazing
The LGIT made a big change in Annarsquos life She is able to concentrate shersquos more active and sleeps better Its just
amazing At first the diet appears very complicated This is because we are so used to eating a lot of bread sugar and
processed food If you just use fresh vegetables meat eggs and fish you can easily cook something very healthy tasty
and LGIT When travelling we always take our own food with us for Anna and there is always something on the menu in
a restaurant that she can eat
-Violeta Giurgi
Summer Time is a great time to find your local farmerrsquos market and buy fresh fruits amp veggies
14
Angels in Action
Angels in Action is where you will read about the inspiring stories of the success in gained skills and abilities by our loved ones with
Angelman Syndrome Written by the families we join in celebrating the abilities no matter how big or small We believe it is
important to inspire everyone with these real stories of our endearingly termed lsquoAngels in Actionrsquo
Possibilities abound when we have a vision By Karen VanPuyenbroeck of Illinois
Angel Mom to Krista 10 years old AS UPD
When I was asked by our Editor In Chief Lizzie Sordia to write a piece about Kristas abilities for this section I asked myself what
were my burning questions about how to develop abilities in my daughter and for me I just really wanted to figure out how I could
teach her to speak I knew that there had to be a way and I obsessed on this topic for hours days months and yes even years It
took me quite a while to find an angel with functional speech but I found him and once I found him I knew that it was possible for my
angel to speak too I wanted to know how it was possible And the big lesson that I learned from Richies mom Dawn was that they
first believed that he could develop this ability and so did his therapists From that point on I developed my own belief and eliminated
therapists who did not support my vision for my daughter of verbal communication and unfortunately for me this meant that Krista
received no speech therapy for a time and mom became her therapist with the help of a program called NACD Through NACD I
learned that an unskilled parent who was willing to learn how to implement therapy who would spend many hours per week
implementing therapy and who could maintain the vision for their child was preferable to a highly skilled professional therapist who
could only spend an hour per week with my child and who did not share my vision
Today at age 10 Krista speaks over a hundred words and has quite a few phrases her speech has been referred to as functional
by her school and by the last two speech therapists who have evaluated her Kristas favorite and most consistent phrase over the
years has been I love you and if those were the only words that I had ever heard spoken from the lips of my angel all of the energy
that we have put into her healing program would have been worth it and I would do hundreds of times over again
Heres how we did it
1 We cultivated belief I have to credit my husband Steve for this This angel Daddy always knew that his girl was A-ok And to my
kids Nana who said simply if you want her to speak we will teach her to speak Because Nana has adult twin boys with autism as
a result of Urea Cycle Disorder I knew that she knew exactly what she was talking about and so I believed her Kristas older
siblings played an essential role by always speaking to her as if she could speak back
2 I tossed out any lsquoDebbie Downerrsquo therapists or health care providers in her life at times this meant that she did not receive
certain therapies at all but again I had come to understand that it was better that I work with her with all of my love support and
belief than it was for a professional who didnt see things that way
3 I only shared my vision for my daughter with people who believed in her ability well meaning friends and relatives may want to
help you accept your childs limitations I finally came to understand that this was their position and realized that pushing the issue
was only baiting them into an oh you poor dear its sad that you have not come to terms with your childs disability type of lecture
4 Gluten and Casein free diet baby Thanks to a miraculous accident I bought the wrong Autism book at Barnes and Noble called
Unraveling The Mystery of Autism by author Karyn Seroussi This started us on an amazing journey that lead us to the wonderful
discovery that by removing these offending proteins my daughters health would improve drastically and as a result of her improved
health status Krista gained many wonderful skills much too many to mention here but improved speech was definitely a biggie
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
15
5 At 5 orsquoclock sharp every morning Krista liked to crawl out of my bed and venture off to her play room
where shed play with blocks and just adored taking things apart During this play time I would get down
on the floor with her grab a block put it near my mouth and just repeatedly say Mama The toy was
used to bring her attention to my mouth a technique that I learned while researching the Son-Rise
program This developed into me singing Mama over and over again and pretty soon my girl was
saying Mama so Id check in with her daily to make sure that she still had Mama down pat and I then
moved on to Dada and Baba etc Some words came very easily and some did not but I remained
grateful for every word or approximation that this angel girl could produce never giving a second
thought to the ones that were really tough for her Always referring to her speech as developing
6 Through Glenn Domans book What to do About Your Brain Injured Child (Brain injury in this context
referring to any condition affecting your childs cognitive ability) I learned that I should listen out for
different sounds that she would make for example many babies will babble mmm You catch the child
saying mmm and you sit him down and say I have noticed that you can say mmm Now we will take
that mmm sound and it will mean Mama In this scenario every time you hear the child babble
mmm you will quickly reinforce this by saying something like You said Mama I love it when you say
Mama You called me and I came My Krista is very high intensity and responds very well to intense
animated and even loud praise so this method has proven very effective for us
7 Good probiotics to clear up yeast in the gut and to help to heal Kristas gut was essential
8 Krista gained even more speech while participating in the Angelman Syndrome Supplement Trial
9 We used MB12 shots with much success in Krista learning to string together longer sentences
10 Lastly in recent months Lizzie talked me into supplementing with a fish oil that is specifically
formulated to aid in speech development We saw great results I learned quite a bit about therapeutic
dosing of fish oil at Integrative Nutrition where Dr Sears of The Zone Diet was a guest lecturer and huge
advocate for this approach From this I learned that Krista needed about three times the amount of fish
oil than what is recommended for general health in order to be able to see an increase in ability for
speech
My determination for Krista to learn to speak started when she was a mere baby she is now 10 and Im
still learning and remaining open to safe and effective ways of helping her in the area of speech as well
as many other areas of her life that will help her to become an independent young lady
If you are reading this and feeling a bit bummed out that you were not as convinced about the speech
thing as I was or you feel like oh had I only been that determined maybe I would be hearing my sweet
Angels voice Let me say this DO NOT feel that way There was something that seemed out of
reach for your Angel that you were able to help him or her accomplish that I may have not been able to
help my daughter to accomplish We only have so much energy to expend in a day I chose to expend it
on speech Another parent might be more consumed by helping their child to gain the ability to walk
independently maybe you always envisioned your angel riding a bike or reading whatever it is I hope
our story encourages you to cultivate a belief and unwavering faith that will lead to the achievement of
yours and more importantly your Angels dreams
Written by
Karen VanPuyenbroeck
Angelman Today Magazine
Associate Editor
KarenAngelmantodayGmailcom
Karen is a certified Health Coach providing Nutrition Counseling services to the special needs
community with a focus on Angelman syndrome To learn more about her services visit her website at wwwAngelFoodsbyKarencom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
16
17
Social Security Disability Benefits and Angelman Syndrome Angelman Syndrome (AS) is a complex genetic disorder characterized by developmental delays and neurological
problems Children with AS often require around-the-clock care for their entire lives
Parents of children who have AS often dedicate extra time energy and even money to provide a high quality of life for
their child Assistive technology supportive care and specialty medical treatments rack up expenses quickly Parents
may even find it necessary to take time away from work to be with their child The resulting loss of income and lack of
medical insurances can be financially devastating
If your child has been diagnosed with Angelman Syndrome he or she may qualify for financial assistance in the form of
Social Security Disability (SSD) benefits SSD payments can be used to cover your childrsquos expensesmdashincluding anything
from food to supportive services to medical bills
The following article will give you a basic overview of the options available to your family and will provide you with the
information needed to begin the SSD application process
Compassionate Allowances and Angelman Syndrome
Typically the SSD application process can take months or even years to complete Fortunately the SSA recognizes that
individuals with severely disabling conditions may not be able to wait that long to receive disability benefits For this
reason the SSA offers Compassionate Allowances (CAL) processing to individuals with certain disabilities Applicants
who have been diagnosed with conditions covered by the CAL program can receive SSD benefits in as little as 10 days
Angelman Syndrome is one of approximately 200 conditions that qualify for CAL processing You will not need to fill out
additional paperwork or request to receive CAL processing The SSA will evaluate your childrsquos claim and expedite it
accordingly
Social Security Disability Insurance and Supplemental Security Income
The SSA offers disability benefits through two separate programsmdashSSDI and SSI Each of these programs has very
specific technical eligibility requirements
SSDI stands for Social Security Disability Insurance and provides benefits to disabled workers Eligibility for SSDI is
dependent on an applicantrsquos employment history as well as the amount of taxes he or she has paid into the system
Children and young adults donrsquot often qualify for SSDI on their own record because they havenrsquot had the chance to work
and pay into the program
It is important to note that if the childrsquos parent is qualified for SSDI or retirement benefits the child may qualify for
dependent benefits based on a parent or guardianrsquos earnings record If your child is technically an adult but was
diagnosed with Angelman Syndrome before age 22 he or she is considered to be an adult child Adult children may also
qualify for a childrsquos dependent benefits
SSI stands for Supplemental Security Income SSI is a needs-based program that provides financial assistance to elderly
or disabled individuals who earn very little income Eligibility for SSI is based on financial need not employment history
To qualify applicants cannot exceed specific financial limitations set in place by the SSA
In the case of a child a portion of his or her parentrsquos income will be ldquodeemedrdquo This means that the SSA will evaluate the
deemed income to determine whether or not the child meets the SSI financial eligibility requirements Deeming occurs
for children who are under the age of 18 unmarried and still live with a parent or guardian Parentsrsquo earned income
unearned income and financial resources will all be taken into consideration
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
18
Income and resources that will not be deemed includes the following
Welfare payments
Public Income Maintenance (PIM) including Temporary Assistance to Needy Families (TANF) and VA pension for
veterans
Food stamps
Disaster assistance
Foster care payments
Tax refunds on real property (property that includes land andor buildings)
Home grown produce used for personal consumption
The SSA also makes the following allowances for living expensesmdashmeaning that the following will be deducted from the
amount of income deemed to your child
$365 a month for each additional child that you support
$710 a month for a single parent or $1066 for two parents
It is important to note that this amount will not be subtracted for parents or children who already receive public assistance
Once your child turns 18 SSI payments will be based on his or her own earnings record
Medical Requirements
In addition to the previously mentioned technical requirements your child must also meet very specific medical
requirements to qualify for disability benefits The requirements can be found in a publication known as the ldquoblue bookrdquo
The SSArsquos blue book contains listings for potentially disabling conditions as well as the specific medical criteria an
applicant must meet to qualify under each condition
The SSA has separate listings for adults and children The specific medical requirement that your child will have to meet is
dependent on his or her age Your child will have to meet one or more of the following blue book listings to qualify for
disability benefits
Section 1205mdashMental Retardation (Adult)
Section 11205 ndash Mental retardation (Child)
Section 11008 B ndash Catastrophic Congenital Disorder (Child)
You can access these specific listings on the SSArsquos website
Preparing for the Social Security Disability Application Process
Even though your child qualifies for the Compassionate Allowances program you will still have to provide thorough medical
evidence that proves the extent of your childrsquos condition Medical evidence should include records of your childrsquos diagnosis
treatments response to treatments hospitalization records and medical test results You should also collect statements
from professional adults that interact with your child on a daily basis This can include doctors teachers and therapists
These statements should provide details about your childrsquos limitations and abilities
The SSA may also ask for evidence of the following
Your childrsquos inability to perform age appropriate functions
IQ test results showing a marked developmental deficit based on age
Other developmental delays and impairments in physical and mental functioning again based on age
You should collect these documents prior to beginning the application process to prevent any delays in the processing of
your childrsquos claim
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
19
Starting Your Application
The SSD application procedures will differ depending on whether you are filing for SSI benefits or SSDI dependent
benefits
If you are interested in learning more about dependent benefits you should call the SSArsquos main phone line (1-800-
772-1213) or contact the representative who handles the eligible parentrsquos claim
To apply for SSI benefits on behalf of a child you will be asked to complete two forms the ldquoApplication for
Supplemental Security Incomerdquo and the ldquoChild Disability Reportrdquo Currently only the child disability report can be
completed online You will have to schedule an appointment with your local Social Security office to complete the
application for SSI
If you are applying for SSI on behalf of an adult you will have to complete the same process with an ldquoAdult
Disability Reportrdquo rather than a child disability report
It is important that you realize how overwhelming and complicated the SSD application process may become In
fact many initial applications are denied and require the applicant to request an appeal hearing If your childrsquos
application is denied do not give up The key to receiving disability benefits it to be persistent in your efforts
For more information about applying for disability benefits visit Social Security Disability Help (wwwdisability-
benefits-helporg) or contact Molly Clarke at macssd-helporg
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
20
READ MORE ABOUT OUR ACTIVITIES AND BROWSE THE
INFORMATION PAGES HERE
httpangelmannetworkwordpresscom
Our successful International Angelman Day celebrations
held across the country
httpangelmannetworkwordpresscomlearn-
aboutwhat-is-the-angelman-network
For up to date info on Therapies
httpangelmannetworkwordpresscomtherapy-for-as
For information and ideas regarding Communication
httpangelmannetworkwordpresscomeducation-and-
communication
For general information on Epilepsy in AS
httpangelmannetworkwordpresscomangelman-
syndromeangelman-syndrome-epilepsy
The Angelman Network was
established in New Zealand as a
Charitable Trust in 2011 (CC46746)
We seek to connect and support
people impacted by Angelman
Syndrome
++++++++++++++
We are New Zealandrsquos only organisation
solely dedicated to promoting
awareness for Angelman Syndrome
and to actively promote and support
the progress being made with world-
wide research on AS
++++++++++++++
Our Information Pages are
regularly updated to include
newimproved ideas and links as
these become available
+++++++++++++++
Our aim is to offer an active and
accurate website which will become
a helpful resource for families and
provide useful and reliable information
for medical and educational
professionals both in
NZ and around the world
WE ARE ON FACEBOOK AT
Non-profit page
httpswwwfacebookcomtheangelmann
etwork
Informal group
httpswwwfacebookcomgroups10468
6089609200
Our ACTION ANGEL TEAM is an informal fundraising group who regularly raise funds and awareness for Angelman Syndrome by running in local races wearing their signature white wings
22
Shea teaches himself to read By Carol Pulver of Florida
Angel Mom to Shea 22 years old AS Del +
Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery
followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done
shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful
Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding
and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a
speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him
to sustain a suck for more than a few seconds
At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory
issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the
milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was
just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately
schedule a neurology consultation get an EEG and do blood work to check for abnormalities
Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family
pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with
the neurologist and the blood work we received some answers
I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old
The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He
told us that our son would never be able to walk to talk or to function as our other children and that we might as well
ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I
sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless
We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do
everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but
the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear
I want to share some of the things wersquove learned along this journey
1 Always trust your intuition No one knows your Angel(s) as well as you do
2 Never put a limit on your Angelrsquos abilities
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
23
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
Contributors
Karen VanPuyenbroek Associate Editor
Isabel Orellana
Marc Bissonnette
Sybille Kraft
Bellamy
A Big Thank You to our contributors for helping to make this magazine a reality Your talent passion and love for our kids is what Angelman Today is all about -Lizzie Sordia Editor ndash in - Chief
Angelman Today
Edwin Weeber PhD Professor Dept of Molecular Pharmacology and Physiology Chief Scientific Officer USF Health Byrd Alzheimers Institute Director Neurobiology of Learning and Memory Laboratory University of South Florida Healths
Morsani College of Medicine
Charles A Williams MD Professor of Pediatrics and
Genetics Division of Genetics and Metabolism Department
of Pediatrics University of Florida
5
Conducting blood testing to diagnose
Angelman syndrome (AS) can be a
complicated matter Here I summarize the
different genetic causes of AS and provide
general guidelines about how to use genetic
tests to confirm the diagnosis of AS First let
us look at the genetic mechanisms that cause
AS
A chromosome 15 pair is illustrated for each class depicted but the other chromosomes are not shown The P
indicates the maternally-derived chromosome and the M indicates the maternally-derived one The shaded
chromosomes have a paternal pattern of gene functioning while the unshaded chromosomes have a maternal
pattern AS can be caused by either a large chromosome deletion (70 of the time) a disruptive mutations in the
UBE3A gene inherited from the mother (indicated by the X) inheritance from the father of 2 normal number 15
chromosomes (eg paternal uniparental disomy [UPD]) or an imprinting defect (ID) occurring when the
chromosome 15 inherited from the mother has the paternal pattern of gene functioning because of a problem in
the imprinting center (denoted by the small open circle)
In addition to these mechanisms a clinical diagnosis of AS may be given even though the genetic testing is
normal The percentages indicate how common each mechanism occurs
How do we use genetic testing and what is the sequence of testing There are many pathways to diagnosis for
families undergoing testing for AS but the most common testing pathway is summarized here
Understanding Genetic Classes of Angelman Syndrome
Dr Charles Williams
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
6
Welcome To Holland
Welcome To Holland
by
Emily Perl Kingsley
copy1987 by Emily Perl Kingsley All rights reserved Reprinted with permission of the author
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not
shared that unique experience to understand it to imagine how it would feel Its like this
When youre going to have a baby its like planning a fabulous vacation trip - to Italy You buy a bunch of guide
books and make your wonderful plans The Coliseum The Michelangelo David The gondolas in Venice You may
learn some handy phrases in Italian Its all very exciting
After months of eager anticipation the day finally arrives You pack your bags and off you go Several hours later
the plane lands The flight attendant comes in and says Welcome to Holland
Holland you say What do you mean Holland I signed up for Italy Im supposed to be in Italy All my life Ive
dreamed of going to Italy
But theres been a change in the flight plan Theyve landed in Holland and there you must stay
The important thing is that they havent taken you to a horrible disgusting filthy place full of pestilence famine and
disease Its just a different place
So you must go out and buy new guide books And you must learn a whole new language And you will meet a
whole new group of people you would never have met
Itrsquos just a different place Its slower-paced than Italy less flashy than Italy But after youve been there for a while
and you catch your breath you look around and you begin to notice that Holland has windmillsand Holland has
tulips Holland even has Rembrandts
But everyone you know is busy coming and going from Italy and theyre all bragging about what a wonderful time
they had there And for the rest of your life you will say Yes thats where I was supposed to go Thats what I had
planned
And the pain of that will never ever ever ever go away because the loss of that dream is a very very significant
loss
But if you spend your life mourning the fact that you didnt get to Italy you may never be free to enjoy the very
special the very lovely things about Holland
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
7
ldquoThe words of advice I offer newly diagnosed families today starts out a little different than it did a few years ago In the past I might have
suggested parents not jump into researching the syndrome and to ignore the majority of what has been written by experts Today
there is a multitude of valuable information available and it is written by the true experts the parents of the Angelman Syndrome
Community Do your research Read all you can Join the online support groups and ask questions Find local families and meet their
families You are going to see a wide variety of personalities abilities opinions and you are going to feel right at home
Here are a few tried and true words of advice that I still share because they have stood the test of time
1 Never underestimate your child and do not base your expectations on the evaluations of others
2 Your child is your child and unless you are neglecting or endangering your child that does not change because of a diagnosis There
are many people out there who think they know best but a parents instinct and the intimate knowledge they have of their child serves as
the best indicator of what is right and of what needs to be done
3 No matter what the numbers say your child is still one of a kind and always will be A diagnosis is a way of helping you help your child
but it does not define your child or your family Your child has a syndrome The syndrome does not have your child
4 Be a family first Try not to let a diagnosis consume you 247 therapy is not healthy for anyone Love and play are the best gifts you
can give your child and are the best stimulants for growth and development
5 Take care of yourself Take care of your spouse and take care of your other children It is easy to focus on your child with a diagnosis
and not realize you have let other things go We have all tried to be the strong one and prove we can do this but I assure you the earlier
you learn to allow others to help out the easier it will be
6 There will be good days and bad days Your emotions will betray you when you least expect it You will experience the highest and
lowest of emotions and sometimes on the same day You will sweat the small stuff and you will celebrate the small stuff You have
joined a community that will be here for all of this and we will understandrdquo
Brenda Dixon Mississippi
Jonathan - 33yrs AS Del+
ldquoNever accept a doctor telling you that your child lsquowont be able torsquo
Never under estimate you childs potential--our kids love to learn Always
have faith in your gut instinctsMomma (or Daddy) usually knows best
Look forward with faith in the advances and treatments that are on the
horizon but as you struggle (from time to time) in your daily life with an
Angel (and there will be struggles) know that you are not alone--we are
all in this together Dont be afraid to ask questions Support tears
cheers and hugs are just a phone call or Facebook post away Take time
each day to recognize the blessings in your life Enjoy your Angel hugsrdquo
Carol Pulver Florida
Shea Pulver - 22yrs AS Del+
ldquoDont allow anyone even yourself to see a diagnosis instead of a child A child needs a parent more than a therapist or researcher
Yes we need to wear several hats to be good parents - but from your childs point of view he really needs Mommy and Daddy more
than DrTherapistresearcheradvocate - he only has ONE parent or set of parents Sometimes we get so caught up in helping them
that we forget the main point which is to be there physically and emotionally for them From the start concentrate on communication and
functional skills These things cannot wait until theyre older Typical children start learning those things immediately and nobody says
oh wait I dont know how to communicate with you yet - I need to take a class or oh wait youll have to learn to potty train or pull your
pants up and down when youre 15 (and 6 feet tall) its more natural to just hand-over-hand those motions from a very early age and
present communication pictures (or even the objects themselves to choose from) as a matter of course as you go about your day (This
is Dora this is a book - which one would you like)
If it takes years to develop the actual skills its better to start at age 2 and have that skill when theyre 12 then to start at age 12 to teach
skillswhen theyve already got ingrained habits and learned helplessness from having everything done for them Believe my aching
back when I say teaching a child to crawl into his carseat early on will save a lot of wear and tear on your body Kids with special needs
get just as much joy and confidence from doing for themselves as anyone You never know until you try Read Disability is Natural by
Kathie Snow This is common sense advice for parents of special needs kids that they really need to hearrdquo
Lulu Carpenter California
Simon - 23 yrs AS
Words Of
Wisdom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
8
Interested in what research has been published about AS Dr Ed Weeber will tell us how we can search for information and some of the
latest research happening around the globe
How can you get published scientific articles concerning Angelman syndrome research By accessing the free data base
called PubMed (wwwpubmedgov) This valuable resource is developed and maintained by the National Center for
Biotechnology Information (NCBI) at the National Library of Medicine (NLM) and contains more than 20 million references
to scientific articles The search function allows single or multiple terms to narrow the number of ldquohitsrdquo In addition you can
search for authors in order to find all of the publications from a specific researcher Many of these publications are free
and all of them have an abstract to describe the research
A search for the term ldquoAngelman syndromerdquo will reveal 1300 publications with the earliest dating back to 1950 To make
the science a little easier to digest every issue will present a selection of the latest published scientific articles with
Angelman syndrome in the title abstract or key words section of the paper Below are some recent papers that have come
out in the last few months
Title Recurrent fractures as a new skeletal problem in the course of Angelman syndrome
Journal Bone
Authors Rusińska A Dzwonek AB Chlebna-Sokoacuteł D
Department of Pediatric Propedeutics and Metabolic Bone Diseases Medical University of Lodz Poland Maria
Konopnicka Memorial Teaching Hospital No 4 Medical University of Lodz Poland
Abstract
Angelman syndrome is a genetically inherited syndrome with severe retardation of psychomotor development and speech
disturbances usually accompanied by epilepsy typical dysmorphic features and some skeletal symptoms The aim of the
current report is to present new skeletal symptoms which may occur in the course of AS based on a case report of an 8-
year-old girl with confirmed 15q1112 microdeletion and recurrent low-trauma bone fractures According to our knowledge it
is the first report of such skeletal symptoms in patient with a diagnosis of AS
Title Role of the ubiquitin ligase E6APUBE3A in controlling levels of the synaptic protein Arc
Journal Proc Natl Acad Sci U S A
Authors Kuumlhnle S Mothes B Matentzoglu K Scheffner M
Department of Biology and Konstanz Research School Chemical Biology University of Konstanz 78457 Konstanz
Germany
Abstract
Inactivation of the ubiquitin ligase E6 associated protein (E6AP) encoded by the UBE3A gene has been associated with
development of the Angelman syndrome Recently it was reported that in mice loss of E6AP expression results in
increased levels of the synaptic protein Arc and a concomitant impaired synaptic function providing an explanation for
some phenotypic features of Angelman syndrome patients Accordingly E6AP has been shown to negatively regulate
activity-regulated cytoskeleton-associated protein (Arc) and it has been suggested that E6AP targets Arc for ubiquitination
and degradation In our study we provide evidence that Arc is not a direct substrate for E6AP and binds only weakly to
E6AP if at all Furthermore we show that down-regulation of E6AP expression stimulates estradiol-induced transcription
of the Arc gene Thus we propose that Arc protein levels are controlled by E6AP at the transcriptional rather than at the
posttranslational level
Title Proteomic profiling in Drosophila reveals potential Dube3a regulation of the actin cytoskeleton and neuronal
homeostasis
Journal PLoS One
Authors Jensen L Farook MF Reiter LT
Department of Neurology University of Tennessee Health Science Center Memphis Tennessee United States of
America 9
Abstract
The molecular defects associated with Angelman syndrome (AS) and 15q duplication autism are directly correlated to
expression levels of the E3 ubiquitin ligase protein UBE3A Here we used Drosophila melanogaster to screen for the targets
of this ubiquitin ligase under conditions of both decreased (as in AS) or increased (as in dup(15)) levels of the fly Dube3a or
human UBE3A proteins Using liquid phase isoelectric focusing of proteins from whole fly head extracts we identified a total of
50 proteins that show changes in protein and in some cases transcriptional levels when Dube3a fluctuates We analyzed
head extracts from cytoplasmic nuclear and membrane fractions for Dube3a regulated proteins Our results indicate that
Dube3a is involved in the regulation of cellular functions related to ATP synthesismetabolism actin cytoskeletal integrity
both catabolism and carbohydrate metabolism as well as nervous system development and function Sixty-two percent of the
proteins were gt50 identical to homologous human proteins and 8 have previously be shown to be ubiquitinated in the fly
nervous system Eight proteins may be regulated by Dube3a at the transcript level through the transcriptional co-activation
function of Dube3a We investigated one autism-associated protein ATPα and found that it can be ubiquitinated in a Dube3a
dependent manner We also found that Dube3a mutants have significantly less filamentous actin than wild type larvae
consistent with the identification of actin targets regulated by Dube3a The identification of UBE3A targets is the first step in
unraveling the molecular etiology of AS and duplication 15q autism
Title Discrimination training reduces high rate social approach behaviors in Angelman syndrome proof of principle
Journal Res Dev Disabil
Authors Heald M Allen D Villa D Oliver C
Cerebra Centre for Neurodevelopmental Disorders School of Psychology University of Birmingham Edgbaston B15 2TT
UK mxo988bhamacuk
Abstract
This proof of principle study was designed to evaluate whether excessively high rates of social approach behaviors in children
with Angelman syndrome (AS) can be modified using a multiple schedule design Four children with AS were exposed to a
multiple schedule arrangement in which social reinforcement and extinction cued using a novel stimulus were alternated
Twenty-five to 35 discrimination training sessions were conducted and levels of approach behaviors were measured before
and after the discrimination training for two children All four participants evidenced discrimination between conditions of
reinforcement and extinction after 16-20 teaching sessions as indicated by lower rates of social approach behaviors in the
presence of the S(Δ) for extinction Reversal effects for the two children for whom this design was implemented were evident
The results demonstrate that after repeated training the use of a novel stimulus can serve as a cue for children with AS to
discriminate adult availability This is a potentially effective component of a broader intervention strategy but highlights the
need for sustained teaching procedures within this population
Title The Angelman syndrome protein Ube3aE6AP is required for Golgi acidification and surface protein sialylation
Journal J Neurosci
Authors Condon KH Ho J Robinson CG Hanus C Ehlers MD
Department of Neurobiology Duke University Medical Center Durham North Carolina 27710 USA
Abstract
Angelman syndrome (AS) is a severe disorder of postnatal brain development caused by neuron-specific loss of the HECT
(homologous to E6AP carboxy terminus) domain E3 ubiquitin ligase Ube3aE6AP The cellular role of Ube3a remains
enigmatic despite recent descriptions of synaptic and behavioral deficits in AS mouse models Although neuron-specific
imprinting is thought to limit the disease to the brain Ube3a is expressed ubiquitously suggesting a broader role in cellular
function In the current study we demonstrate a profound structural disruption and cisternal swelling of the Golgi apparatus
(GA) in the cortex of AS (UBE3A(m-p+)) mice In Ube3a knockdown cell lines and UBE3A(m-p+) cortical neurons the GA is
severely under-acidified leading to osmotic swelling Both in vitro and in vivo the loss of Ube3a and corresponding elevated
pH of the GA is associated with a marked reduction in protein sialylation a process highly dependent on intralumenal Golgi
pH Altered ion homeostasis of the GA may provide a common cellular pathophysiology underlying the diverse plasticity and
neurodevelopmental deficits associated with AS
10
A Grandmother finds a solution for her granddaughter and all of our kids with Angelman Syndrome
By Lois Carroll
When my growing granddaughter who has AS couldnt be fitted with large enough bibs I took out my sewing machine to
solve the problem I showed the resulting smock to friends and my project Sophies Smocks named after my granddaughter
was born so that many kids with AS could have a free smock
I buy new and gently used turtlenecks and trim Supporters donate their time to help and their money for postage and
materials to keep the project ongoing All the smocks are FREE for individuals with AS I have child size SMALL to adult XL
They are available to others for a donation to cover at least the postage to keep the project going
To get a smock all you have to do is ask by emailing smockscoxnet Give me your childs shirt size plus a name and
mailing address including zip Ill send one as soon as I can Theres no catch and no obligation I mail around the world and
free means free You can check it out at my website httploiscarrollbookscomindexSShtm
Thank you
Grandma Lois
Sophies Smocks
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
Clinical Trial of Low Glycemic Index Treatment proves effective for reducing seizures by 80 ndash 90
Dr Thibert and Dr Elizabeth Thiele (both are members of the Scientific Advisory board for the Angelman Syndrome
Foundation) were able to launch a clinical study to determine the efficacy of the Low Glycemic Index Treatment in
reducing seizures in individuals with Angelman Syndrome In July 2012 the results were in and published in
Epilepsia and in the Angelman Syndrome Foundation newsletter
Epilepsia link httponlinelibrarywileycomdoi101111j1528-1167201203537xabstract
PubMed link httpwwwncbinlmnihgovpubmed22779920
You can read my interview with Dr Thibert on my blog wwwMeetTheFamiliesofASblogspotcom
11
NEW DEVELOPMENTS AT THE ANGELMAN SYNDROME FOUNDATION
Angelman Syndrome Foundation Invests $125 Million in AS ResearchDue to your support the Angelman Syndrome Foundation is able to award more than $125 million in grants for AS research this current grant cycle This yearrsquos funded research will contribute to all future AS preclinical and clinical trials helping move AS research closer to developing treatments for individuals with AS while furthering the research communityrsquos understanding of the complexities of AS Thanks to you this yearrsquos funded research will seek to define the optimal window for potential treatment further understanding of varying UBE3A gene mutations and deletions and determine if a current FDA-approved drug is a viable treatment in an AS mouse model
ASF Biennial Conference Your Ultimate AS ResourceThe Angelman Syndrome Foundationrsquos 2013 Biennial Conference Championing Progress will be held July 23-26 at the Walt Disney World Swan amp Dolphin resort in Orlando Florida As a central resource for your familyrsquos unique needs and those of your loved one with AS the Conference addresses all aspects of living with AS and provides the opportunity to network and learn from a variety of experts and keynote speakers attend breakout sessions and participate in collaborative opportunities with other families
iPads For ASTo help individuals with AS overcome some of the challenges associated with communication the Angelman Syndrome Foundation has launched the iPads For AS program which provides Applereg iPadsreg for up to 100 individuals who qualify for the program Requirements for
participation include working with a speech pathologist and conducting quarterly assessments among others
ASF Honors Your InvestmentDue to your support and that of more than 7000 volunteers during the last 21 years the Angelman Syndrome Foundation has been able to
bull Providemorethan250000individuals with information support and connections to resources
bull Raisemorethan$125million to fund research and provide direct support to individuals affected by AS
bull Grantmorethan$58millionto more than 70 research endeavors to support a diverse set of research projects
bull Holdmorethan186individualwalks in 42 cities across the country that have been attended by more than 52000 individuals
The Angelman Syndrome Foundation is honored to serve as a resource to the AS community and welcomes any individual touched by AS to contact the organization
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Thank you for your supportThe 2013 Angelman Syndrome Foundation National Walk boasted record participation with more than 11700 individuals who to date have raised more than $1 million towards the $11 million fundraising goal Fundraising continues through September 30 The Angelman Syndrome Foundation is deeply grateful for the time energy and support that you and the AS community invested to raise these funds that provide direct support to individuals with AS and their families through programs resources and networking opportunities and that fund research that will help lead to a cure for AS
The Power of Cooking
Angelman syndrome ketogenic diets and LGIT
By Sybille Kraft Bellamy
One of the best ways to naturally help our angels is by giving them a
nutritious healthy diet
Our angels are fragile and very sensitive to their environment
Little things minor changes can trigger dramatic consequences
Each child is unique each parent is special
We have to rediscover the power of food
Therapeutic diets like ketogenic diets have been used for years to help
control epilepsy Today the LGIT (Low Glycemic Index Treatment) is
one of the easiest diets to give to our angels It is one of the weapons
we can use to protect them from the multiple risks they face Seizures
are a major and common risk for our angels
The LGIT helps balance and reinforce the energy they need to keep
them happy healthy and at full cognitive capability
The modification of your childrsquos diet can be done one step at a time
Small changes can lead to big improvements
This is a unique opportunity for you MOM and DAD to directly affect
your childrsquos health and quality of life
There is nothing more terrible than to feel helpless when your child is
sick Our Angelrsquos challenges are numerous and it is proven that a
special diet can help avoid many of their complications
The medical community is embracing this form of treatment to remedy
many disorders worldwide The Angelman community is hard at work to
bring awareness of this treatment to our families Resources such as
ldquoAngleman Syndrome Dietrdquo on Facebook and The Charlie Foundation
can provide information and support to help you start taking control of
your childrsquos diet health and wellbeing
LGIT Testimonial - Jay and Joel are my 26 year old identical twin sons who both have Angelman Syndrome
Seizures have always been a huge problem for them at one point they were both having over 250 grandmals a day
and spent almost a year in the hospital trying to get them controlled Doctors at that time only gave them a 1
chance to survive Now at age 26 Joelrsquos seizures are well controlled with meds but Jayrsquos have never been controlled
In March we started the LGIT after talking to his Dr and getting a lot of support and advice from Sybille Since
starting the diet we have seen a huge decrease in the amount and severity of Jayrsquos seizures Before the diet he
would have 10-20 seizures a week and need a rescue med 3x a week and now he may have only 4-5 seizures a
month Prior to starting the LGIT Jayrsquos seizures were very intense grandmals where he would stop breathing and turn
blue each time and he would have several in a row we have not seen him turn blue or stop breathing since the diet I
believe the diet is helping him tremendously and he is much more alert and vocal Their neurologist has begun
weaning Joel off of one of his seizure meds because of the side effects and we have now started Joel on the LGIT
diet also and he too is acting more alert and vocal (and no seizures) - Lisa Truax-Murphy
Recipes can be found on
Facebookcomangelmansyndromediet
13
LGIT Testimonial - Anna had a terrible start She could not drink and because of this she was hospitalized 3 weeks
after her birth They soon discovered she had epilepsy and here in The Netherlands I understood almost all babies with
epilepsy get Phenobarbital Because I was not satisfied with the care Anna received we decided to move to another
hospital So almost 6 months later the new neurologist advised us to stop with Phenobarbital and start with Keppra
And it was a good choice When Anna was 1 year old she finally got diagnosed Angelman Syndrome With Keppra
we succeeded to keep her seizure free for almost 2 years When the seizures came back we started with Rivotril
(Clonazepam) in addition to the Keppra and it helped her for 2 years but then the seizures came back again Her
neurologist advised us to start with a third drug but we didnrsquot want to give her more medicine At the same time I read
the research article about the LGIT and I got enthusiastic about it I had to give it a try Annarsquos neurologist was a bit
suspicious but I insisted so he helped us The first month was terrible Anna got more seizures and was very tired I was
so afraid I was only complicating her life instead of helping her I was so down that I just wanted to stop the diet But
after a long phone call with Sybille Kraft I decided to continue the diet for just a few more weeks And Irsquom so happy we
did this A week later Annarsquos absences were gone She started to walk again became more alert And the best thing
of all was that for the first time in her life she slept for 6 hours without waking This was so amazing
The LGIT made a big change in Annarsquos life She is able to concentrate shersquos more active and sleeps better Its just
amazing At first the diet appears very complicated This is because we are so used to eating a lot of bread sugar and
processed food If you just use fresh vegetables meat eggs and fish you can easily cook something very healthy tasty
and LGIT When travelling we always take our own food with us for Anna and there is always something on the menu in
a restaurant that she can eat
-Violeta Giurgi
Summer Time is a great time to find your local farmerrsquos market and buy fresh fruits amp veggies
14
Angels in Action
Angels in Action is where you will read about the inspiring stories of the success in gained skills and abilities by our loved ones with
Angelman Syndrome Written by the families we join in celebrating the abilities no matter how big or small We believe it is
important to inspire everyone with these real stories of our endearingly termed lsquoAngels in Actionrsquo
Possibilities abound when we have a vision By Karen VanPuyenbroeck of Illinois
Angel Mom to Krista 10 years old AS UPD
When I was asked by our Editor In Chief Lizzie Sordia to write a piece about Kristas abilities for this section I asked myself what
were my burning questions about how to develop abilities in my daughter and for me I just really wanted to figure out how I could
teach her to speak I knew that there had to be a way and I obsessed on this topic for hours days months and yes even years It
took me quite a while to find an angel with functional speech but I found him and once I found him I knew that it was possible for my
angel to speak too I wanted to know how it was possible And the big lesson that I learned from Richies mom Dawn was that they
first believed that he could develop this ability and so did his therapists From that point on I developed my own belief and eliminated
therapists who did not support my vision for my daughter of verbal communication and unfortunately for me this meant that Krista
received no speech therapy for a time and mom became her therapist with the help of a program called NACD Through NACD I
learned that an unskilled parent who was willing to learn how to implement therapy who would spend many hours per week
implementing therapy and who could maintain the vision for their child was preferable to a highly skilled professional therapist who
could only spend an hour per week with my child and who did not share my vision
Today at age 10 Krista speaks over a hundred words and has quite a few phrases her speech has been referred to as functional
by her school and by the last two speech therapists who have evaluated her Kristas favorite and most consistent phrase over the
years has been I love you and if those were the only words that I had ever heard spoken from the lips of my angel all of the energy
that we have put into her healing program would have been worth it and I would do hundreds of times over again
Heres how we did it
1 We cultivated belief I have to credit my husband Steve for this This angel Daddy always knew that his girl was A-ok And to my
kids Nana who said simply if you want her to speak we will teach her to speak Because Nana has adult twin boys with autism as
a result of Urea Cycle Disorder I knew that she knew exactly what she was talking about and so I believed her Kristas older
siblings played an essential role by always speaking to her as if she could speak back
2 I tossed out any lsquoDebbie Downerrsquo therapists or health care providers in her life at times this meant that she did not receive
certain therapies at all but again I had come to understand that it was better that I work with her with all of my love support and
belief than it was for a professional who didnt see things that way
3 I only shared my vision for my daughter with people who believed in her ability well meaning friends and relatives may want to
help you accept your childs limitations I finally came to understand that this was their position and realized that pushing the issue
was only baiting them into an oh you poor dear its sad that you have not come to terms with your childs disability type of lecture
4 Gluten and Casein free diet baby Thanks to a miraculous accident I bought the wrong Autism book at Barnes and Noble called
Unraveling The Mystery of Autism by author Karyn Seroussi This started us on an amazing journey that lead us to the wonderful
discovery that by removing these offending proteins my daughters health would improve drastically and as a result of her improved
health status Krista gained many wonderful skills much too many to mention here but improved speech was definitely a biggie
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
15
5 At 5 orsquoclock sharp every morning Krista liked to crawl out of my bed and venture off to her play room
where shed play with blocks and just adored taking things apart During this play time I would get down
on the floor with her grab a block put it near my mouth and just repeatedly say Mama The toy was
used to bring her attention to my mouth a technique that I learned while researching the Son-Rise
program This developed into me singing Mama over and over again and pretty soon my girl was
saying Mama so Id check in with her daily to make sure that she still had Mama down pat and I then
moved on to Dada and Baba etc Some words came very easily and some did not but I remained
grateful for every word or approximation that this angel girl could produce never giving a second
thought to the ones that were really tough for her Always referring to her speech as developing
6 Through Glenn Domans book What to do About Your Brain Injured Child (Brain injury in this context
referring to any condition affecting your childs cognitive ability) I learned that I should listen out for
different sounds that she would make for example many babies will babble mmm You catch the child
saying mmm and you sit him down and say I have noticed that you can say mmm Now we will take
that mmm sound and it will mean Mama In this scenario every time you hear the child babble
mmm you will quickly reinforce this by saying something like You said Mama I love it when you say
Mama You called me and I came My Krista is very high intensity and responds very well to intense
animated and even loud praise so this method has proven very effective for us
7 Good probiotics to clear up yeast in the gut and to help to heal Kristas gut was essential
8 Krista gained even more speech while participating in the Angelman Syndrome Supplement Trial
9 We used MB12 shots with much success in Krista learning to string together longer sentences
10 Lastly in recent months Lizzie talked me into supplementing with a fish oil that is specifically
formulated to aid in speech development We saw great results I learned quite a bit about therapeutic
dosing of fish oil at Integrative Nutrition where Dr Sears of The Zone Diet was a guest lecturer and huge
advocate for this approach From this I learned that Krista needed about three times the amount of fish
oil than what is recommended for general health in order to be able to see an increase in ability for
speech
My determination for Krista to learn to speak started when she was a mere baby she is now 10 and Im
still learning and remaining open to safe and effective ways of helping her in the area of speech as well
as many other areas of her life that will help her to become an independent young lady
If you are reading this and feeling a bit bummed out that you were not as convinced about the speech
thing as I was or you feel like oh had I only been that determined maybe I would be hearing my sweet
Angels voice Let me say this DO NOT feel that way There was something that seemed out of
reach for your Angel that you were able to help him or her accomplish that I may have not been able to
help my daughter to accomplish We only have so much energy to expend in a day I chose to expend it
on speech Another parent might be more consumed by helping their child to gain the ability to walk
independently maybe you always envisioned your angel riding a bike or reading whatever it is I hope
our story encourages you to cultivate a belief and unwavering faith that will lead to the achievement of
yours and more importantly your Angels dreams
Written by
Karen VanPuyenbroeck
Angelman Today Magazine
Associate Editor
KarenAngelmantodayGmailcom
Karen is a certified Health Coach providing Nutrition Counseling services to the special needs
community with a focus on Angelman syndrome To learn more about her services visit her website at wwwAngelFoodsbyKarencom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
16
17
Social Security Disability Benefits and Angelman Syndrome Angelman Syndrome (AS) is a complex genetic disorder characterized by developmental delays and neurological
problems Children with AS often require around-the-clock care for their entire lives
Parents of children who have AS often dedicate extra time energy and even money to provide a high quality of life for
their child Assistive technology supportive care and specialty medical treatments rack up expenses quickly Parents
may even find it necessary to take time away from work to be with their child The resulting loss of income and lack of
medical insurances can be financially devastating
If your child has been diagnosed with Angelman Syndrome he or she may qualify for financial assistance in the form of
Social Security Disability (SSD) benefits SSD payments can be used to cover your childrsquos expensesmdashincluding anything
from food to supportive services to medical bills
The following article will give you a basic overview of the options available to your family and will provide you with the
information needed to begin the SSD application process
Compassionate Allowances and Angelman Syndrome
Typically the SSD application process can take months or even years to complete Fortunately the SSA recognizes that
individuals with severely disabling conditions may not be able to wait that long to receive disability benefits For this
reason the SSA offers Compassionate Allowances (CAL) processing to individuals with certain disabilities Applicants
who have been diagnosed with conditions covered by the CAL program can receive SSD benefits in as little as 10 days
Angelman Syndrome is one of approximately 200 conditions that qualify for CAL processing You will not need to fill out
additional paperwork or request to receive CAL processing The SSA will evaluate your childrsquos claim and expedite it
accordingly
Social Security Disability Insurance and Supplemental Security Income
The SSA offers disability benefits through two separate programsmdashSSDI and SSI Each of these programs has very
specific technical eligibility requirements
SSDI stands for Social Security Disability Insurance and provides benefits to disabled workers Eligibility for SSDI is
dependent on an applicantrsquos employment history as well as the amount of taxes he or she has paid into the system
Children and young adults donrsquot often qualify for SSDI on their own record because they havenrsquot had the chance to work
and pay into the program
It is important to note that if the childrsquos parent is qualified for SSDI or retirement benefits the child may qualify for
dependent benefits based on a parent or guardianrsquos earnings record If your child is technically an adult but was
diagnosed with Angelman Syndrome before age 22 he or she is considered to be an adult child Adult children may also
qualify for a childrsquos dependent benefits
SSI stands for Supplemental Security Income SSI is a needs-based program that provides financial assistance to elderly
or disabled individuals who earn very little income Eligibility for SSI is based on financial need not employment history
To qualify applicants cannot exceed specific financial limitations set in place by the SSA
In the case of a child a portion of his or her parentrsquos income will be ldquodeemedrdquo This means that the SSA will evaluate the
deemed income to determine whether or not the child meets the SSI financial eligibility requirements Deeming occurs
for children who are under the age of 18 unmarried and still live with a parent or guardian Parentsrsquo earned income
unearned income and financial resources will all be taken into consideration
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
18
Income and resources that will not be deemed includes the following
Welfare payments
Public Income Maintenance (PIM) including Temporary Assistance to Needy Families (TANF) and VA pension for
veterans
Food stamps
Disaster assistance
Foster care payments
Tax refunds on real property (property that includes land andor buildings)
Home grown produce used for personal consumption
The SSA also makes the following allowances for living expensesmdashmeaning that the following will be deducted from the
amount of income deemed to your child
$365 a month for each additional child that you support
$710 a month for a single parent or $1066 for two parents
It is important to note that this amount will not be subtracted for parents or children who already receive public assistance
Once your child turns 18 SSI payments will be based on his or her own earnings record
Medical Requirements
In addition to the previously mentioned technical requirements your child must also meet very specific medical
requirements to qualify for disability benefits The requirements can be found in a publication known as the ldquoblue bookrdquo
The SSArsquos blue book contains listings for potentially disabling conditions as well as the specific medical criteria an
applicant must meet to qualify under each condition
The SSA has separate listings for adults and children The specific medical requirement that your child will have to meet is
dependent on his or her age Your child will have to meet one or more of the following blue book listings to qualify for
disability benefits
Section 1205mdashMental Retardation (Adult)
Section 11205 ndash Mental retardation (Child)
Section 11008 B ndash Catastrophic Congenital Disorder (Child)
You can access these specific listings on the SSArsquos website
Preparing for the Social Security Disability Application Process
Even though your child qualifies for the Compassionate Allowances program you will still have to provide thorough medical
evidence that proves the extent of your childrsquos condition Medical evidence should include records of your childrsquos diagnosis
treatments response to treatments hospitalization records and medical test results You should also collect statements
from professional adults that interact with your child on a daily basis This can include doctors teachers and therapists
These statements should provide details about your childrsquos limitations and abilities
The SSA may also ask for evidence of the following
Your childrsquos inability to perform age appropriate functions
IQ test results showing a marked developmental deficit based on age
Other developmental delays and impairments in physical and mental functioning again based on age
You should collect these documents prior to beginning the application process to prevent any delays in the processing of
your childrsquos claim
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
19
Starting Your Application
The SSD application procedures will differ depending on whether you are filing for SSI benefits or SSDI dependent
benefits
If you are interested in learning more about dependent benefits you should call the SSArsquos main phone line (1-800-
772-1213) or contact the representative who handles the eligible parentrsquos claim
To apply for SSI benefits on behalf of a child you will be asked to complete two forms the ldquoApplication for
Supplemental Security Incomerdquo and the ldquoChild Disability Reportrdquo Currently only the child disability report can be
completed online You will have to schedule an appointment with your local Social Security office to complete the
application for SSI
If you are applying for SSI on behalf of an adult you will have to complete the same process with an ldquoAdult
Disability Reportrdquo rather than a child disability report
It is important that you realize how overwhelming and complicated the SSD application process may become In
fact many initial applications are denied and require the applicant to request an appeal hearing If your childrsquos
application is denied do not give up The key to receiving disability benefits it to be persistent in your efforts
For more information about applying for disability benefits visit Social Security Disability Help (wwwdisability-
benefits-helporg) or contact Molly Clarke at macssd-helporg
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
20
READ MORE ABOUT OUR ACTIVITIES AND BROWSE THE
INFORMATION PAGES HERE
httpangelmannetworkwordpresscom
Our successful International Angelman Day celebrations
held across the country
httpangelmannetworkwordpresscomlearn-
aboutwhat-is-the-angelman-network
For up to date info on Therapies
httpangelmannetworkwordpresscomtherapy-for-as
For information and ideas regarding Communication
httpangelmannetworkwordpresscomeducation-and-
communication
For general information on Epilepsy in AS
httpangelmannetworkwordpresscomangelman-
syndromeangelman-syndrome-epilepsy
The Angelman Network was
established in New Zealand as a
Charitable Trust in 2011 (CC46746)
We seek to connect and support
people impacted by Angelman
Syndrome
++++++++++++++
We are New Zealandrsquos only organisation
solely dedicated to promoting
awareness for Angelman Syndrome
and to actively promote and support
the progress being made with world-
wide research on AS
++++++++++++++
Our Information Pages are
regularly updated to include
newimproved ideas and links as
these become available
+++++++++++++++
Our aim is to offer an active and
accurate website which will become
a helpful resource for families and
provide useful and reliable information
for medical and educational
professionals both in
NZ and around the world
WE ARE ON FACEBOOK AT
Non-profit page
httpswwwfacebookcomtheangelmann
etwork
Informal group
httpswwwfacebookcomgroups10468
6089609200
Our ACTION ANGEL TEAM is an informal fundraising group who regularly raise funds and awareness for Angelman Syndrome by running in local races wearing their signature white wings
22
Shea teaches himself to read By Carol Pulver of Florida
Angel Mom to Shea 22 years old AS Del +
Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery
followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done
shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful
Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding
and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a
speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him
to sustain a suck for more than a few seconds
At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory
issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the
milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was
just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately
schedule a neurology consultation get an EEG and do blood work to check for abnormalities
Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family
pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with
the neurologist and the blood work we received some answers
I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old
The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He
told us that our son would never be able to walk to talk or to function as our other children and that we might as well
ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I
sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless
We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do
everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but
the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear
I want to share some of the things wersquove learned along this journey
1 Always trust your intuition No one knows your Angel(s) as well as you do
2 Never put a limit on your Angelrsquos abilities
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
23
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
Conducting blood testing to diagnose
Angelman syndrome (AS) can be a
complicated matter Here I summarize the
different genetic causes of AS and provide
general guidelines about how to use genetic
tests to confirm the diagnosis of AS First let
us look at the genetic mechanisms that cause
AS
A chromosome 15 pair is illustrated for each class depicted but the other chromosomes are not shown The P
indicates the maternally-derived chromosome and the M indicates the maternally-derived one The shaded
chromosomes have a paternal pattern of gene functioning while the unshaded chromosomes have a maternal
pattern AS can be caused by either a large chromosome deletion (70 of the time) a disruptive mutations in the
UBE3A gene inherited from the mother (indicated by the X) inheritance from the father of 2 normal number 15
chromosomes (eg paternal uniparental disomy [UPD]) or an imprinting defect (ID) occurring when the
chromosome 15 inherited from the mother has the paternal pattern of gene functioning because of a problem in
the imprinting center (denoted by the small open circle)
In addition to these mechanisms a clinical diagnosis of AS may be given even though the genetic testing is
normal The percentages indicate how common each mechanism occurs
How do we use genetic testing and what is the sequence of testing There are many pathways to diagnosis for
families undergoing testing for AS but the most common testing pathway is summarized here
Understanding Genetic Classes of Angelman Syndrome
Dr Charles Williams
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
6
Welcome To Holland
Welcome To Holland
by
Emily Perl Kingsley
copy1987 by Emily Perl Kingsley All rights reserved Reprinted with permission of the author
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not
shared that unique experience to understand it to imagine how it would feel Its like this
When youre going to have a baby its like planning a fabulous vacation trip - to Italy You buy a bunch of guide
books and make your wonderful plans The Coliseum The Michelangelo David The gondolas in Venice You may
learn some handy phrases in Italian Its all very exciting
After months of eager anticipation the day finally arrives You pack your bags and off you go Several hours later
the plane lands The flight attendant comes in and says Welcome to Holland
Holland you say What do you mean Holland I signed up for Italy Im supposed to be in Italy All my life Ive
dreamed of going to Italy
But theres been a change in the flight plan Theyve landed in Holland and there you must stay
The important thing is that they havent taken you to a horrible disgusting filthy place full of pestilence famine and
disease Its just a different place
So you must go out and buy new guide books And you must learn a whole new language And you will meet a
whole new group of people you would never have met
Itrsquos just a different place Its slower-paced than Italy less flashy than Italy But after youve been there for a while
and you catch your breath you look around and you begin to notice that Holland has windmillsand Holland has
tulips Holland even has Rembrandts
But everyone you know is busy coming and going from Italy and theyre all bragging about what a wonderful time
they had there And for the rest of your life you will say Yes thats where I was supposed to go Thats what I had
planned
And the pain of that will never ever ever ever go away because the loss of that dream is a very very significant
loss
But if you spend your life mourning the fact that you didnt get to Italy you may never be free to enjoy the very
special the very lovely things about Holland
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
7
ldquoThe words of advice I offer newly diagnosed families today starts out a little different than it did a few years ago In the past I might have
suggested parents not jump into researching the syndrome and to ignore the majority of what has been written by experts Today
there is a multitude of valuable information available and it is written by the true experts the parents of the Angelman Syndrome
Community Do your research Read all you can Join the online support groups and ask questions Find local families and meet their
families You are going to see a wide variety of personalities abilities opinions and you are going to feel right at home
Here are a few tried and true words of advice that I still share because they have stood the test of time
1 Never underestimate your child and do not base your expectations on the evaluations of others
2 Your child is your child and unless you are neglecting or endangering your child that does not change because of a diagnosis There
are many people out there who think they know best but a parents instinct and the intimate knowledge they have of their child serves as
the best indicator of what is right and of what needs to be done
3 No matter what the numbers say your child is still one of a kind and always will be A diagnosis is a way of helping you help your child
but it does not define your child or your family Your child has a syndrome The syndrome does not have your child
4 Be a family first Try not to let a diagnosis consume you 247 therapy is not healthy for anyone Love and play are the best gifts you
can give your child and are the best stimulants for growth and development
5 Take care of yourself Take care of your spouse and take care of your other children It is easy to focus on your child with a diagnosis
and not realize you have let other things go We have all tried to be the strong one and prove we can do this but I assure you the earlier
you learn to allow others to help out the easier it will be
6 There will be good days and bad days Your emotions will betray you when you least expect it You will experience the highest and
lowest of emotions and sometimes on the same day You will sweat the small stuff and you will celebrate the small stuff You have
joined a community that will be here for all of this and we will understandrdquo
Brenda Dixon Mississippi
Jonathan - 33yrs AS Del+
ldquoNever accept a doctor telling you that your child lsquowont be able torsquo
Never under estimate you childs potential--our kids love to learn Always
have faith in your gut instinctsMomma (or Daddy) usually knows best
Look forward with faith in the advances and treatments that are on the
horizon but as you struggle (from time to time) in your daily life with an
Angel (and there will be struggles) know that you are not alone--we are
all in this together Dont be afraid to ask questions Support tears
cheers and hugs are just a phone call or Facebook post away Take time
each day to recognize the blessings in your life Enjoy your Angel hugsrdquo
Carol Pulver Florida
Shea Pulver - 22yrs AS Del+
ldquoDont allow anyone even yourself to see a diagnosis instead of a child A child needs a parent more than a therapist or researcher
Yes we need to wear several hats to be good parents - but from your childs point of view he really needs Mommy and Daddy more
than DrTherapistresearcheradvocate - he only has ONE parent or set of parents Sometimes we get so caught up in helping them
that we forget the main point which is to be there physically and emotionally for them From the start concentrate on communication and
functional skills These things cannot wait until theyre older Typical children start learning those things immediately and nobody says
oh wait I dont know how to communicate with you yet - I need to take a class or oh wait youll have to learn to potty train or pull your
pants up and down when youre 15 (and 6 feet tall) its more natural to just hand-over-hand those motions from a very early age and
present communication pictures (or even the objects themselves to choose from) as a matter of course as you go about your day (This
is Dora this is a book - which one would you like)
If it takes years to develop the actual skills its better to start at age 2 and have that skill when theyre 12 then to start at age 12 to teach
skillswhen theyve already got ingrained habits and learned helplessness from having everything done for them Believe my aching
back when I say teaching a child to crawl into his carseat early on will save a lot of wear and tear on your body Kids with special needs
get just as much joy and confidence from doing for themselves as anyone You never know until you try Read Disability is Natural by
Kathie Snow This is common sense advice for parents of special needs kids that they really need to hearrdquo
Lulu Carpenter California
Simon - 23 yrs AS
Words Of
Wisdom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
8
Interested in what research has been published about AS Dr Ed Weeber will tell us how we can search for information and some of the
latest research happening around the globe
How can you get published scientific articles concerning Angelman syndrome research By accessing the free data base
called PubMed (wwwpubmedgov) This valuable resource is developed and maintained by the National Center for
Biotechnology Information (NCBI) at the National Library of Medicine (NLM) and contains more than 20 million references
to scientific articles The search function allows single or multiple terms to narrow the number of ldquohitsrdquo In addition you can
search for authors in order to find all of the publications from a specific researcher Many of these publications are free
and all of them have an abstract to describe the research
A search for the term ldquoAngelman syndromerdquo will reveal 1300 publications with the earliest dating back to 1950 To make
the science a little easier to digest every issue will present a selection of the latest published scientific articles with
Angelman syndrome in the title abstract or key words section of the paper Below are some recent papers that have come
out in the last few months
Title Recurrent fractures as a new skeletal problem in the course of Angelman syndrome
Journal Bone
Authors Rusińska A Dzwonek AB Chlebna-Sokoacuteł D
Department of Pediatric Propedeutics and Metabolic Bone Diseases Medical University of Lodz Poland Maria
Konopnicka Memorial Teaching Hospital No 4 Medical University of Lodz Poland
Abstract
Angelman syndrome is a genetically inherited syndrome with severe retardation of psychomotor development and speech
disturbances usually accompanied by epilepsy typical dysmorphic features and some skeletal symptoms The aim of the
current report is to present new skeletal symptoms which may occur in the course of AS based on a case report of an 8-
year-old girl with confirmed 15q1112 microdeletion and recurrent low-trauma bone fractures According to our knowledge it
is the first report of such skeletal symptoms in patient with a diagnosis of AS
Title Role of the ubiquitin ligase E6APUBE3A in controlling levels of the synaptic protein Arc
Journal Proc Natl Acad Sci U S A
Authors Kuumlhnle S Mothes B Matentzoglu K Scheffner M
Department of Biology and Konstanz Research School Chemical Biology University of Konstanz 78457 Konstanz
Germany
Abstract
Inactivation of the ubiquitin ligase E6 associated protein (E6AP) encoded by the UBE3A gene has been associated with
development of the Angelman syndrome Recently it was reported that in mice loss of E6AP expression results in
increased levels of the synaptic protein Arc and a concomitant impaired synaptic function providing an explanation for
some phenotypic features of Angelman syndrome patients Accordingly E6AP has been shown to negatively regulate
activity-regulated cytoskeleton-associated protein (Arc) and it has been suggested that E6AP targets Arc for ubiquitination
and degradation In our study we provide evidence that Arc is not a direct substrate for E6AP and binds only weakly to
E6AP if at all Furthermore we show that down-regulation of E6AP expression stimulates estradiol-induced transcription
of the Arc gene Thus we propose that Arc protein levels are controlled by E6AP at the transcriptional rather than at the
posttranslational level
Title Proteomic profiling in Drosophila reveals potential Dube3a regulation of the actin cytoskeleton and neuronal
homeostasis
Journal PLoS One
Authors Jensen L Farook MF Reiter LT
Department of Neurology University of Tennessee Health Science Center Memphis Tennessee United States of
America 9
Abstract
The molecular defects associated with Angelman syndrome (AS) and 15q duplication autism are directly correlated to
expression levels of the E3 ubiquitin ligase protein UBE3A Here we used Drosophila melanogaster to screen for the targets
of this ubiquitin ligase under conditions of both decreased (as in AS) or increased (as in dup(15)) levels of the fly Dube3a or
human UBE3A proteins Using liquid phase isoelectric focusing of proteins from whole fly head extracts we identified a total of
50 proteins that show changes in protein and in some cases transcriptional levels when Dube3a fluctuates We analyzed
head extracts from cytoplasmic nuclear and membrane fractions for Dube3a regulated proteins Our results indicate that
Dube3a is involved in the regulation of cellular functions related to ATP synthesismetabolism actin cytoskeletal integrity
both catabolism and carbohydrate metabolism as well as nervous system development and function Sixty-two percent of the
proteins were gt50 identical to homologous human proteins and 8 have previously be shown to be ubiquitinated in the fly
nervous system Eight proteins may be regulated by Dube3a at the transcript level through the transcriptional co-activation
function of Dube3a We investigated one autism-associated protein ATPα and found that it can be ubiquitinated in a Dube3a
dependent manner We also found that Dube3a mutants have significantly less filamentous actin than wild type larvae
consistent with the identification of actin targets regulated by Dube3a The identification of UBE3A targets is the first step in
unraveling the molecular etiology of AS and duplication 15q autism
Title Discrimination training reduces high rate social approach behaviors in Angelman syndrome proof of principle
Journal Res Dev Disabil
Authors Heald M Allen D Villa D Oliver C
Cerebra Centre for Neurodevelopmental Disorders School of Psychology University of Birmingham Edgbaston B15 2TT
UK mxo988bhamacuk
Abstract
This proof of principle study was designed to evaluate whether excessively high rates of social approach behaviors in children
with Angelman syndrome (AS) can be modified using a multiple schedule design Four children with AS were exposed to a
multiple schedule arrangement in which social reinforcement and extinction cued using a novel stimulus were alternated
Twenty-five to 35 discrimination training sessions were conducted and levels of approach behaviors were measured before
and after the discrimination training for two children All four participants evidenced discrimination between conditions of
reinforcement and extinction after 16-20 teaching sessions as indicated by lower rates of social approach behaviors in the
presence of the S(Δ) for extinction Reversal effects for the two children for whom this design was implemented were evident
The results demonstrate that after repeated training the use of a novel stimulus can serve as a cue for children with AS to
discriminate adult availability This is a potentially effective component of a broader intervention strategy but highlights the
need for sustained teaching procedures within this population
Title The Angelman syndrome protein Ube3aE6AP is required for Golgi acidification and surface protein sialylation
Journal J Neurosci
Authors Condon KH Ho J Robinson CG Hanus C Ehlers MD
Department of Neurobiology Duke University Medical Center Durham North Carolina 27710 USA
Abstract
Angelman syndrome (AS) is a severe disorder of postnatal brain development caused by neuron-specific loss of the HECT
(homologous to E6AP carboxy terminus) domain E3 ubiquitin ligase Ube3aE6AP The cellular role of Ube3a remains
enigmatic despite recent descriptions of synaptic and behavioral deficits in AS mouse models Although neuron-specific
imprinting is thought to limit the disease to the brain Ube3a is expressed ubiquitously suggesting a broader role in cellular
function In the current study we demonstrate a profound structural disruption and cisternal swelling of the Golgi apparatus
(GA) in the cortex of AS (UBE3A(m-p+)) mice In Ube3a knockdown cell lines and UBE3A(m-p+) cortical neurons the GA is
severely under-acidified leading to osmotic swelling Both in vitro and in vivo the loss of Ube3a and corresponding elevated
pH of the GA is associated with a marked reduction in protein sialylation a process highly dependent on intralumenal Golgi
pH Altered ion homeostasis of the GA may provide a common cellular pathophysiology underlying the diverse plasticity and
neurodevelopmental deficits associated with AS
10
A Grandmother finds a solution for her granddaughter and all of our kids with Angelman Syndrome
By Lois Carroll
When my growing granddaughter who has AS couldnt be fitted with large enough bibs I took out my sewing machine to
solve the problem I showed the resulting smock to friends and my project Sophies Smocks named after my granddaughter
was born so that many kids with AS could have a free smock
I buy new and gently used turtlenecks and trim Supporters donate their time to help and their money for postage and
materials to keep the project ongoing All the smocks are FREE for individuals with AS I have child size SMALL to adult XL
They are available to others for a donation to cover at least the postage to keep the project going
To get a smock all you have to do is ask by emailing smockscoxnet Give me your childs shirt size plus a name and
mailing address including zip Ill send one as soon as I can Theres no catch and no obligation I mail around the world and
free means free You can check it out at my website httploiscarrollbookscomindexSShtm
Thank you
Grandma Lois
Sophies Smocks
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
Clinical Trial of Low Glycemic Index Treatment proves effective for reducing seizures by 80 ndash 90
Dr Thibert and Dr Elizabeth Thiele (both are members of the Scientific Advisory board for the Angelman Syndrome
Foundation) were able to launch a clinical study to determine the efficacy of the Low Glycemic Index Treatment in
reducing seizures in individuals with Angelman Syndrome In July 2012 the results were in and published in
Epilepsia and in the Angelman Syndrome Foundation newsletter
Epilepsia link httponlinelibrarywileycomdoi101111j1528-1167201203537xabstract
PubMed link httpwwwncbinlmnihgovpubmed22779920
You can read my interview with Dr Thibert on my blog wwwMeetTheFamiliesofASblogspotcom
11
NEW DEVELOPMENTS AT THE ANGELMAN SYNDROME FOUNDATION
Angelman Syndrome Foundation Invests $125 Million in AS ResearchDue to your support the Angelman Syndrome Foundation is able to award more than $125 million in grants for AS research this current grant cycle This yearrsquos funded research will contribute to all future AS preclinical and clinical trials helping move AS research closer to developing treatments for individuals with AS while furthering the research communityrsquos understanding of the complexities of AS Thanks to you this yearrsquos funded research will seek to define the optimal window for potential treatment further understanding of varying UBE3A gene mutations and deletions and determine if a current FDA-approved drug is a viable treatment in an AS mouse model
ASF Biennial Conference Your Ultimate AS ResourceThe Angelman Syndrome Foundationrsquos 2013 Biennial Conference Championing Progress will be held July 23-26 at the Walt Disney World Swan amp Dolphin resort in Orlando Florida As a central resource for your familyrsquos unique needs and those of your loved one with AS the Conference addresses all aspects of living with AS and provides the opportunity to network and learn from a variety of experts and keynote speakers attend breakout sessions and participate in collaborative opportunities with other families
iPads For ASTo help individuals with AS overcome some of the challenges associated with communication the Angelman Syndrome Foundation has launched the iPads For AS program which provides Applereg iPadsreg for up to 100 individuals who qualify for the program Requirements for
participation include working with a speech pathologist and conducting quarterly assessments among others
ASF Honors Your InvestmentDue to your support and that of more than 7000 volunteers during the last 21 years the Angelman Syndrome Foundation has been able to
bull Providemorethan250000individuals with information support and connections to resources
bull Raisemorethan$125million to fund research and provide direct support to individuals affected by AS
bull Grantmorethan$58millionto more than 70 research endeavors to support a diverse set of research projects
bull Holdmorethan186individualwalks in 42 cities across the country that have been attended by more than 52000 individuals
The Angelman Syndrome Foundation is honored to serve as a resource to the AS community and welcomes any individual touched by AS to contact the organization
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Thank you for your supportThe 2013 Angelman Syndrome Foundation National Walk boasted record participation with more than 11700 individuals who to date have raised more than $1 million towards the $11 million fundraising goal Fundraising continues through September 30 The Angelman Syndrome Foundation is deeply grateful for the time energy and support that you and the AS community invested to raise these funds that provide direct support to individuals with AS and their families through programs resources and networking opportunities and that fund research that will help lead to a cure for AS
The Power of Cooking
Angelman syndrome ketogenic diets and LGIT
By Sybille Kraft Bellamy
One of the best ways to naturally help our angels is by giving them a
nutritious healthy diet
Our angels are fragile and very sensitive to their environment
Little things minor changes can trigger dramatic consequences
Each child is unique each parent is special
We have to rediscover the power of food
Therapeutic diets like ketogenic diets have been used for years to help
control epilepsy Today the LGIT (Low Glycemic Index Treatment) is
one of the easiest diets to give to our angels It is one of the weapons
we can use to protect them from the multiple risks they face Seizures
are a major and common risk for our angels
The LGIT helps balance and reinforce the energy they need to keep
them happy healthy and at full cognitive capability
The modification of your childrsquos diet can be done one step at a time
Small changes can lead to big improvements
This is a unique opportunity for you MOM and DAD to directly affect
your childrsquos health and quality of life
There is nothing more terrible than to feel helpless when your child is
sick Our Angelrsquos challenges are numerous and it is proven that a
special diet can help avoid many of their complications
The medical community is embracing this form of treatment to remedy
many disorders worldwide The Angelman community is hard at work to
bring awareness of this treatment to our families Resources such as
ldquoAngleman Syndrome Dietrdquo on Facebook and The Charlie Foundation
can provide information and support to help you start taking control of
your childrsquos diet health and wellbeing
LGIT Testimonial - Jay and Joel are my 26 year old identical twin sons who both have Angelman Syndrome
Seizures have always been a huge problem for them at one point they were both having over 250 grandmals a day
and spent almost a year in the hospital trying to get them controlled Doctors at that time only gave them a 1
chance to survive Now at age 26 Joelrsquos seizures are well controlled with meds but Jayrsquos have never been controlled
In March we started the LGIT after talking to his Dr and getting a lot of support and advice from Sybille Since
starting the diet we have seen a huge decrease in the amount and severity of Jayrsquos seizures Before the diet he
would have 10-20 seizures a week and need a rescue med 3x a week and now he may have only 4-5 seizures a
month Prior to starting the LGIT Jayrsquos seizures were very intense grandmals where he would stop breathing and turn
blue each time and he would have several in a row we have not seen him turn blue or stop breathing since the diet I
believe the diet is helping him tremendously and he is much more alert and vocal Their neurologist has begun
weaning Joel off of one of his seizure meds because of the side effects and we have now started Joel on the LGIT
diet also and he too is acting more alert and vocal (and no seizures) - Lisa Truax-Murphy
Recipes can be found on
Facebookcomangelmansyndromediet
13
LGIT Testimonial - Anna had a terrible start She could not drink and because of this she was hospitalized 3 weeks
after her birth They soon discovered she had epilepsy and here in The Netherlands I understood almost all babies with
epilepsy get Phenobarbital Because I was not satisfied with the care Anna received we decided to move to another
hospital So almost 6 months later the new neurologist advised us to stop with Phenobarbital and start with Keppra
And it was a good choice When Anna was 1 year old she finally got diagnosed Angelman Syndrome With Keppra
we succeeded to keep her seizure free for almost 2 years When the seizures came back we started with Rivotril
(Clonazepam) in addition to the Keppra and it helped her for 2 years but then the seizures came back again Her
neurologist advised us to start with a third drug but we didnrsquot want to give her more medicine At the same time I read
the research article about the LGIT and I got enthusiastic about it I had to give it a try Annarsquos neurologist was a bit
suspicious but I insisted so he helped us The first month was terrible Anna got more seizures and was very tired I was
so afraid I was only complicating her life instead of helping her I was so down that I just wanted to stop the diet But
after a long phone call with Sybille Kraft I decided to continue the diet for just a few more weeks And Irsquom so happy we
did this A week later Annarsquos absences were gone She started to walk again became more alert And the best thing
of all was that for the first time in her life she slept for 6 hours without waking This was so amazing
The LGIT made a big change in Annarsquos life She is able to concentrate shersquos more active and sleeps better Its just
amazing At first the diet appears very complicated This is because we are so used to eating a lot of bread sugar and
processed food If you just use fresh vegetables meat eggs and fish you can easily cook something very healthy tasty
and LGIT When travelling we always take our own food with us for Anna and there is always something on the menu in
a restaurant that she can eat
-Violeta Giurgi
Summer Time is a great time to find your local farmerrsquos market and buy fresh fruits amp veggies
14
Angels in Action
Angels in Action is where you will read about the inspiring stories of the success in gained skills and abilities by our loved ones with
Angelman Syndrome Written by the families we join in celebrating the abilities no matter how big or small We believe it is
important to inspire everyone with these real stories of our endearingly termed lsquoAngels in Actionrsquo
Possibilities abound when we have a vision By Karen VanPuyenbroeck of Illinois
Angel Mom to Krista 10 years old AS UPD
When I was asked by our Editor In Chief Lizzie Sordia to write a piece about Kristas abilities for this section I asked myself what
were my burning questions about how to develop abilities in my daughter and for me I just really wanted to figure out how I could
teach her to speak I knew that there had to be a way and I obsessed on this topic for hours days months and yes even years It
took me quite a while to find an angel with functional speech but I found him and once I found him I knew that it was possible for my
angel to speak too I wanted to know how it was possible And the big lesson that I learned from Richies mom Dawn was that they
first believed that he could develop this ability and so did his therapists From that point on I developed my own belief and eliminated
therapists who did not support my vision for my daughter of verbal communication and unfortunately for me this meant that Krista
received no speech therapy for a time and mom became her therapist with the help of a program called NACD Through NACD I
learned that an unskilled parent who was willing to learn how to implement therapy who would spend many hours per week
implementing therapy and who could maintain the vision for their child was preferable to a highly skilled professional therapist who
could only spend an hour per week with my child and who did not share my vision
Today at age 10 Krista speaks over a hundred words and has quite a few phrases her speech has been referred to as functional
by her school and by the last two speech therapists who have evaluated her Kristas favorite and most consistent phrase over the
years has been I love you and if those were the only words that I had ever heard spoken from the lips of my angel all of the energy
that we have put into her healing program would have been worth it and I would do hundreds of times over again
Heres how we did it
1 We cultivated belief I have to credit my husband Steve for this This angel Daddy always knew that his girl was A-ok And to my
kids Nana who said simply if you want her to speak we will teach her to speak Because Nana has adult twin boys with autism as
a result of Urea Cycle Disorder I knew that she knew exactly what she was talking about and so I believed her Kristas older
siblings played an essential role by always speaking to her as if she could speak back
2 I tossed out any lsquoDebbie Downerrsquo therapists or health care providers in her life at times this meant that she did not receive
certain therapies at all but again I had come to understand that it was better that I work with her with all of my love support and
belief than it was for a professional who didnt see things that way
3 I only shared my vision for my daughter with people who believed in her ability well meaning friends and relatives may want to
help you accept your childs limitations I finally came to understand that this was their position and realized that pushing the issue
was only baiting them into an oh you poor dear its sad that you have not come to terms with your childs disability type of lecture
4 Gluten and Casein free diet baby Thanks to a miraculous accident I bought the wrong Autism book at Barnes and Noble called
Unraveling The Mystery of Autism by author Karyn Seroussi This started us on an amazing journey that lead us to the wonderful
discovery that by removing these offending proteins my daughters health would improve drastically and as a result of her improved
health status Krista gained many wonderful skills much too many to mention here but improved speech was definitely a biggie
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
15
5 At 5 orsquoclock sharp every morning Krista liked to crawl out of my bed and venture off to her play room
where shed play with blocks and just adored taking things apart During this play time I would get down
on the floor with her grab a block put it near my mouth and just repeatedly say Mama The toy was
used to bring her attention to my mouth a technique that I learned while researching the Son-Rise
program This developed into me singing Mama over and over again and pretty soon my girl was
saying Mama so Id check in with her daily to make sure that she still had Mama down pat and I then
moved on to Dada and Baba etc Some words came very easily and some did not but I remained
grateful for every word or approximation that this angel girl could produce never giving a second
thought to the ones that were really tough for her Always referring to her speech as developing
6 Through Glenn Domans book What to do About Your Brain Injured Child (Brain injury in this context
referring to any condition affecting your childs cognitive ability) I learned that I should listen out for
different sounds that she would make for example many babies will babble mmm You catch the child
saying mmm and you sit him down and say I have noticed that you can say mmm Now we will take
that mmm sound and it will mean Mama In this scenario every time you hear the child babble
mmm you will quickly reinforce this by saying something like You said Mama I love it when you say
Mama You called me and I came My Krista is very high intensity and responds very well to intense
animated and even loud praise so this method has proven very effective for us
7 Good probiotics to clear up yeast in the gut and to help to heal Kristas gut was essential
8 Krista gained even more speech while participating in the Angelman Syndrome Supplement Trial
9 We used MB12 shots with much success in Krista learning to string together longer sentences
10 Lastly in recent months Lizzie talked me into supplementing with a fish oil that is specifically
formulated to aid in speech development We saw great results I learned quite a bit about therapeutic
dosing of fish oil at Integrative Nutrition where Dr Sears of The Zone Diet was a guest lecturer and huge
advocate for this approach From this I learned that Krista needed about three times the amount of fish
oil than what is recommended for general health in order to be able to see an increase in ability for
speech
My determination for Krista to learn to speak started when she was a mere baby she is now 10 and Im
still learning and remaining open to safe and effective ways of helping her in the area of speech as well
as many other areas of her life that will help her to become an independent young lady
If you are reading this and feeling a bit bummed out that you were not as convinced about the speech
thing as I was or you feel like oh had I only been that determined maybe I would be hearing my sweet
Angels voice Let me say this DO NOT feel that way There was something that seemed out of
reach for your Angel that you were able to help him or her accomplish that I may have not been able to
help my daughter to accomplish We only have so much energy to expend in a day I chose to expend it
on speech Another parent might be more consumed by helping their child to gain the ability to walk
independently maybe you always envisioned your angel riding a bike or reading whatever it is I hope
our story encourages you to cultivate a belief and unwavering faith that will lead to the achievement of
yours and more importantly your Angels dreams
Written by
Karen VanPuyenbroeck
Angelman Today Magazine
Associate Editor
KarenAngelmantodayGmailcom
Karen is a certified Health Coach providing Nutrition Counseling services to the special needs
community with a focus on Angelman syndrome To learn more about her services visit her website at wwwAngelFoodsbyKarencom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
16
17
Social Security Disability Benefits and Angelman Syndrome Angelman Syndrome (AS) is a complex genetic disorder characterized by developmental delays and neurological
problems Children with AS often require around-the-clock care for their entire lives
Parents of children who have AS often dedicate extra time energy and even money to provide a high quality of life for
their child Assistive technology supportive care and specialty medical treatments rack up expenses quickly Parents
may even find it necessary to take time away from work to be with their child The resulting loss of income and lack of
medical insurances can be financially devastating
If your child has been diagnosed with Angelman Syndrome he or she may qualify for financial assistance in the form of
Social Security Disability (SSD) benefits SSD payments can be used to cover your childrsquos expensesmdashincluding anything
from food to supportive services to medical bills
The following article will give you a basic overview of the options available to your family and will provide you with the
information needed to begin the SSD application process
Compassionate Allowances and Angelman Syndrome
Typically the SSD application process can take months or even years to complete Fortunately the SSA recognizes that
individuals with severely disabling conditions may not be able to wait that long to receive disability benefits For this
reason the SSA offers Compassionate Allowances (CAL) processing to individuals with certain disabilities Applicants
who have been diagnosed with conditions covered by the CAL program can receive SSD benefits in as little as 10 days
Angelman Syndrome is one of approximately 200 conditions that qualify for CAL processing You will not need to fill out
additional paperwork or request to receive CAL processing The SSA will evaluate your childrsquos claim and expedite it
accordingly
Social Security Disability Insurance and Supplemental Security Income
The SSA offers disability benefits through two separate programsmdashSSDI and SSI Each of these programs has very
specific technical eligibility requirements
SSDI stands for Social Security Disability Insurance and provides benefits to disabled workers Eligibility for SSDI is
dependent on an applicantrsquos employment history as well as the amount of taxes he or she has paid into the system
Children and young adults donrsquot often qualify for SSDI on their own record because they havenrsquot had the chance to work
and pay into the program
It is important to note that if the childrsquos parent is qualified for SSDI or retirement benefits the child may qualify for
dependent benefits based on a parent or guardianrsquos earnings record If your child is technically an adult but was
diagnosed with Angelman Syndrome before age 22 he or she is considered to be an adult child Adult children may also
qualify for a childrsquos dependent benefits
SSI stands for Supplemental Security Income SSI is a needs-based program that provides financial assistance to elderly
or disabled individuals who earn very little income Eligibility for SSI is based on financial need not employment history
To qualify applicants cannot exceed specific financial limitations set in place by the SSA
In the case of a child a portion of his or her parentrsquos income will be ldquodeemedrdquo This means that the SSA will evaluate the
deemed income to determine whether or not the child meets the SSI financial eligibility requirements Deeming occurs
for children who are under the age of 18 unmarried and still live with a parent or guardian Parentsrsquo earned income
unearned income and financial resources will all be taken into consideration
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
18
Income and resources that will not be deemed includes the following
Welfare payments
Public Income Maintenance (PIM) including Temporary Assistance to Needy Families (TANF) and VA pension for
veterans
Food stamps
Disaster assistance
Foster care payments
Tax refunds on real property (property that includes land andor buildings)
Home grown produce used for personal consumption
The SSA also makes the following allowances for living expensesmdashmeaning that the following will be deducted from the
amount of income deemed to your child
$365 a month for each additional child that you support
$710 a month for a single parent or $1066 for two parents
It is important to note that this amount will not be subtracted for parents or children who already receive public assistance
Once your child turns 18 SSI payments will be based on his or her own earnings record
Medical Requirements
In addition to the previously mentioned technical requirements your child must also meet very specific medical
requirements to qualify for disability benefits The requirements can be found in a publication known as the ldquoblue bookrdquo
The SSArsquos blue book contains listings for potentially disabling conditions as well as the specific medical criteria an
applicant must meet to qualify under each condition
The SSA has separate listings for adults and children The specific medical requirement that your child will have to meet is
dependent on his or her age Your child will have to meet one or more of the following blue book listings to qualify for
disability benefits
Section 1205mdashMental Retardation (Adult)
Section 11205 ndash Mental retardation (Child)
Section 11008 B ndash Catastrophic Congenital Disorder (Child)
You can access these specific listings on the SSArsquos website
Preparing for the Social Security Disability Application Process
Even though your child qualifies for the Compassionate Allowances program you will still have to provide thorough medical
evidence that proves the extent of your childrsquos condition Medical evidence should include records of your childrsquos diagnosis
treatments response to treatments hospitalization records and medical test results You should also collect statements
from professional adults that interact with your child on a daily basis This can include doctors teachers and therapists
These statements should provide details about your childrsquos limitations and abilities
The SSA may also ask for evidence of the following
Your childrsquos inability to perform age appropriate functions
IQ test results showing a marked developmental deficit based on age
Other developmental delays and impairments in physical and mental functioning again based on age
You should collect these documents prior to beginning the application process to prevent any delays in the processing of
your childrsquos claim
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
19
Starting Your Application
The SSD application procedures will differ depending on whether you are filing for SSI benefits or SSDI dependent
benefits
If you are interested in learning more about dependent benefits you should call the SSArsquos main phone line (1-800-
772-1213) or contact the representative who handles the eligible parentrsquos claim
To apply for SSI benefits on behalf of a child you will be asked to complete two forms the ldquoApplication for
Supplemental Security Incomerdquo and the ldquoChild Disability Reportrdquo Currently only the child disability report can be
completed online You will have to schedule an appointment with your local Social Security office to complete the
application for SSI
If you are applying for SSI on behalf of an adult you will have to complete the same process with an ldquoAdult
Disability Reportrdquo rather than a child disability report
It is important that you realize how overwhelming and complicated the SSD application process may become In
fact many initial applications are denied and require the applicant to request an appeal hearing If your childrsquos
application is denied do not give up The key to receiving disability benefits it to be persistent in your efforts
For more information about applying for disability benefits visit Social Security Disability Help (wwwdisability-
benefits-helporg) or contact Molly Clarke at macssd-helporg
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
20
READ MORE ABOUT OUR ACTIVITIES AND BROWSE THE
INFORMATION PAGES HERE
httpangelmannetworkwordpresscom
Our successful International Angelman Day celebrations
held across the country
httpangelmannetworkwordpresscomlearn-
aboutwhat-is-the-angelman-network
For up to date info on Therapies
httpangelmannetworkwordpresscomtherapy-for-as
For information and ideas regarding Communication
httpangelmannetworkwordpresscomeducation-and-
communication
For general information on Epilepsy in AS
httpangelmannetworkwordpresscomangelman-
syndromeangelman-syndrome-epilepsy
The Angelman Network was
established in New Zealand as a
Charitable Trust in 2011 (CC46746)
We seek to connect and support
people impacted by Angelman
Syndrome
++++++++++++++
We are New Zealandrsquos only organisation
solely dedicated to promoting
awareness for Angelman Syndrome
and to actively promote and support
the progress being made with world-
wide research on AS
++++++++++++++
Our Information Pages are
regularly updated to include
newimproved ideas and links as
these become available
+++++++++++++++
Our aim is to offer an active and
accurate website which will become
a helpful resource for families and
provide useful and reliable information
for medical and educational
professionals both in
NZ and around the world
WE ARE ON FACEBOOK AT
Non-profit page
httpswwwfacebookcomtheangelmann
etwork
Informal group
httpswwwfacebookcomgroups10468
6089609200
Our ACTION ANGEL TEAM is an informal fundraising group who regularly raise funds and awareness for Angelman Syndrome by running in local races wearing their signature white wings
22
Shea teaches himself to read By Carol Pulver of Florida
Angel Mom to Shea 22 years old AS Del +
Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery
followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done
shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful
Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding
and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a
speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him
to sustain a suck for more than a few seconds
At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory
issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the
milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was
just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately
schedule a neurology consultation get an EEG and do blood work to check for abnormalities
Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family
pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with
the neurologist and the blood work we received some answers
I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old
The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He
told us that our son would never be able to walk to talk or to function as our other children and that we might as well
ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I
sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless
We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do
everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but
the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear
I want to share some of the things wersquove learned along this journey
1 Always trust your intuition No one knows your Angel(s) as well as you do
2 Never put a limit on your Angelrsquos abilities
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
23
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
Welcome To Holland
Welcome To Holland
by
Emily Perl Kingsley
copy1987 by Emily Perl Kingsley All rights reserved Reprinted with permission of the author
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not
shared that unique experience to understand it to imagine how it would feel Its like this
When youre going to have a baby its like planning a fabulous vacation trip - to Italy You buy a bunch of guide
books and make your wonderful plans The Coliseum The Michelangelo David The gondolas in Venice You may
learn some handy phrases in Italian Its all very exciting
After months of eager anticipation the day finally arrives You pack your bags and off you go Several hours later
the plane lands The flight attendant comes in and says Welcome to Holland
Holland you say What do you mean Holland I signed up for Italy Im supposed to be in Italy All my life Ive
dreamed of going to Italy
But theres been a change in the flight plan Theyve landed in Holland and there you must stay
The important thing is that they havent taken you to a horrible disgusting filthy place full of pestilence famine and
disease Its just a different place
So you must go out and buy new guide books And you must learn a whole new language And you will meet a
whole new group of people you would never have met
Itrsquos just a different place Its slower-paced than Italy less flashy than Italy But after youve been there for a while
and you catch your breath you look around and you begin to notice that Holland has windmillsand Holland has
tulips Holland even has Rembrandts
But everyone you know is busy coming and going from Italy and theyre all bragging about what a wonderful time
they had there And for the rest of your life you will say Yes thats where I was supposed to go Thats what I had
planned
And the pain of that will never ever ever ever go away because the loss of that dream is a very very significant
loss
But if you spend your life mourning the fact that you didnt get to Italy you may never be free to enjoy the very
special the very lovely things about Holland
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
7
ldquoThe words of advice I offer newly diagnosed families today starts out a little different than it did a few years ago In the past I might have
suggested parents not jump into researching the syndrome and to ignore the majority of what has been written by experts Today
there is a multitude of valuable information available and it is written by the true experts the parents of the Angelman Syndrome
Community Do your research Read all you can Join the online support groups and ask questions Find local families and meet their
families You are going to see a wide variety of personalities abilities opinions and you are going to feel right at home
Here are a few tried and true words of advice that I still share because they have stood the test of time
1 Never underestimate your child and do not base your expectations on the evaluations of others
2 Your child is your child and unless you are neglecting or endangering your child that does not change because of a diagnosis There
are many people out there who think they know best but a parents instinct and the intimate knowledge they have of their child serves as
the best indicator of what is right and of what needs to be done
3 No matter what the numbers say your child is still one of a kind and always will be A diagnosis is a way of helping you help your child
but it does not define your child or your family Your child has a syndrome The syndrome does not have your child
4 Be a family first Try not to let a diagnosis consume you 247 therapy is not healthy for anyone Love and play are the best gifts you
can give your child and are the best stimulants for growth and development
5 Take care of yourself Take care of your spouse and take care of your other children It is easy to focus on your child with a diagnosis
and not realize you have let other things go We have all tried to be the strong one and prove we can do this but I assure you the earlier
you learn to allow others to help out the easier it will be
6 There will be good days and bad days Your emotions will betray you when you least expect it You will experience the highest and
lowest of emotions and sometimes on the same day You will sweat the small stuff and you will celebrate the small stuff You have
joined a community that will be here for all of this and we will understandrdquo
Brenda Dixon Mississippi
Jonathan - 33yrs AS Del+
ldquoNever accept a doctor telling you that your child lsquowont be able torsquo
Never under estimate you childs potential--our kids love to learn Always
have faith in your gut instinctsMomma (or Daddy) usually knows best
Look forward with faith in the advances and treatments that are on the
horizon but as you struggle (from time to time) in your daily life with an
Angel (and there will be struggles) know that you are not alone--we are
all in this together Dont be afraid to ask questions Support tears
cheers and hugs are just a phone call or Facebook post away Take time
each day to recognize the blessings in your life Enjoy your Angel hugsrdquo
Carol Pulver Florida
Shea Pulver - 22yrs AS Del+
ldquoDont allow anyone even yourself to see a diagnosis instead of a child A child needs a parent more than a therapist or researcher
Yes we need to wear several hats to be good parents - but from your childs point of view he really needs Mommy and Daddy more
than DrTherapistresearcheradvocate - he only has ONE parent or set of parents Sometimes we get so caught up in helping them
that we forget the main point which is to be there physically and emotionally for them From the start concentrate on communication and
functional skills These things cannot wait until theyre older Typical children start learning those things immediately and nobody says
oh wait I dont know how to communicate with you yet - I need to take a class or oh wait youll have to learn to potty train or pull your
pants up and down when youre 15 (and 6 feet tall) its more natural to just hand-over-hand those motions from a very early age and
present communication pictures (or even the objects themselves to choose from) as a matter of course as you go about your day (This
is Dora this is a book - which one would you like)
If it takes years to develop the actual skills its better to start at age 2 and have that skill when theyre 12 then to start at age 12 to teach
skillswhen theyve already got ingrained habits and learned helplessness from having everything done for them Believe my aching
back when I say teaching a child to crawl into his carseat early on will save a lot of wear and tear on your body Kids with special needs
get just as much joy and confidence from doing for themselves as anyone You never know until you try Read Disability is Natural by
Kathie Snow This is common sense advice for parents of special needs kids that they really need to hearrdquo
Lulu Carpenter California
Simon - 23 yrs AS
Words Of
Wisdom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
8
Interested in what research has been published about AS Dr Ed Weeber will tell us how we can search for information and some of the
latest research happening around the globe
How can you get published scientific articles concerning Angelman syndrome research By accessing the free data base
called PubMed (wwwpubmedgov) This valuable resource is developed and maintained by the National Center for
Biotechnology Information (NCBI) at the National Library of Medicine (NLM) and contains more than 20 million references
to scientific articles The search function allows single or multiple terms to narrow the number of ldquohitsrdquo In addition you can
search for authors in order to find all of the publications from a specific researcher Many of these publications are free
and all of them have an abstract to describe the research
A search for the term ldquoAngelman syndromerdquo will reveal 1300 publications with the earliest dating back to 1950 To make
the science a little easier to digest every issue will present a selection of the latest published scientific articles with
Angelman syndrome in the title abstract or key words section of the paper Below are some recent papers that have come
out in the last few months
Title Recurrent fractures as a new skeletal problem in the course of Angelman syndrome
Journal Bone
Authors Rusińska A Dzwonek AB Chlebna-Sokoacuteł D
Department of Pediatric Propedeutics and Metabolic Bone Diseases Medical University of Lodz Poland Maria
Konopnicka Memorial Teaching Hospital No 4 Medical University of Lodz Poland
Abstract
Angelman syndrome is a genetically inherited syndrome with severe retardation of psychomotor development and speech
disturbances usually accompanied by epilepsy typical dysmorphic features and some skeletal symptoms The aim of the
current report is to present new skeletal symptoms which may occur in the course of AS based on a case report of an 8-
year-old girl with confirmed 15q1112 microdeletion and recurrent low-trauma bone fractures According to our knowledge it
is the first report of such skeletal symptoms in patient with a diagnosis of AS
Title Role of the ubiquitin ligase E6APUBE3A in controlling levels of the synaptic protein Arc
Journal Proc Natl Acad Sci U S A
Authors Kuumlhnle S Mothes B Matentzoglu K Scheffner M
Department of Biology and Konstanz Research School Chemical Biology University of Konstanz 78457 Konstanz
Germany
Abstract
Inactivation of the ubiquitin ligase E6 associated protein (E6AP) encoded by the UBE3A gene has been associated with
development of the Angelman syndrome Recently it was reported that in mice loss of E6AP expression results in
increased levels of the synaptic protein Arc and a concomitant impaired synaptic function providing an explanation for
some phenotypic features of Angelman syndrome patients Accordingly E6AP has been shown to negatively regulate
activity-regulated cytoskeleton-associated protein (Arc) and it has been suggested that E6AP targets Arc for ubiquitination
and degradation In our study we provide evidence that Arc is not a direct substrate for E6AP and binds only weakly to
E6AP if at all Furthermore we show that down-regulation of E6AP expression stimulates estradiol-induced transcription
of the Arc gene Thus we propose that Arc protein levels are controlled by E6AP at the transcriptional rather than at the
posttranslational level
Title Proteomic profiling in Drosophila reveals potential Dube3a regulation of the actin cytoskeleton and neuronal
homeostasis
Journal PLoS One
Authors Jensen L Farook MF Reiter LT
Department of Neurology University of Tennessee Health Science Center Memphis Tennessee United States of
America 9
Abstract
The molecular defects associated with Angelman syndrome (AS) and 15q duplication autism are directly correlated to
expression levels of the E3 ubiquitin ligase protein UBE3A Here we used Drosophila melanogaster to screen for the targets
of this ubiquitin ligase under conditions of both decreased (as in AS) or increased (as in dup(15)) levels of the fly Dube3a or
human UBE3A proteins Using liquid phase isoelectric focusing of proteins from whole fly head extracts we identified a total of
50 proteins that show changes in protein and in some cases transcriptional levels when Dube3a fluctuates We analyzed
head extracts from cytoplasmic nuclear and membrane fractions for Dube3a regulated proteins Our results indicate that
Dube3a is involved in the regulation of cellular functions related to ATP synthesismetabolism actin cytoskeletal integrity
both catabolism and carbohydrate metabolism as well as nervous system development and function Sixty-two percent of the
proteins were gt50 identical to homologous human proteins and 8 have previously be shown to be ubiquitinated in the fly
nervous system Eight proteins may be regulated by Dube3a at the transcript level through the transcriptional co-activation
function of Dube3a We investigated one autism-associated protein ATPα and found that it can be ubiquitinated in a Dube3a
dependent manner We also found that Dube3a mutants have significantly less filamentous actin than wild type larvae
consistent with the identification of actin targets regulated by Dube3a The identification of UBE3A targets is the first step in
unraveling the molecular etiology of AS and duplication 15q autism
Title Discrimination training reduces high rate social approach behaviors in Angelman syndrome proof of principle
Journal Res Dev Disabil
Authors Heald M Allen D Villa D Oliver C
Cerebra Centre for Neurodevelopmental Disorders School of Psychology University of Birmingham Edgbaston B15 2TT
UK mxo988bhamacuk
Abstract
This proof of principle study was designed to evaluate whether excessively high rates of social approach behaviors in children
with Angelman syndrome (AS) can be modified using a multiple schedule design Four children with AS were exposed to a
multiple schedule arrangement in which social reinforcement and extinction cued using a novel stimulus were alternated
Twenty-five to 35 discrimination training sessions were conducted and levels of approach behaviors were measured before
and after the discrimination training for two children All four participants evidenced discrimination between conditions of
reinforcement and extinction after 16-20 teaching sessions as indicated by lower rates of social approach behaviors in the
presence of the S(Δ) for extinction Reversal effects for the two children for whom this design was implemented were evident
The results demonstrate that after repeated training the use of a novel stimulus can serve as a cue for children with AS to
discriminate adult availability This is a potentially effective component of a broader intervention strategy but highlights the
need for sustained teaching procedures within this population
Title The Angelman syndrome protein Ube3aE6AP is required for Golgi acidification and surface protein sialylation
Journal J Neurosci
Authors Condon KH Ho J Robinson CG Hanus C Ehlers MD
Department of Neurobiology Duke University Medical Center Durham North Carolina 27710 USA
Abstract
Angelman syndrome (AS) is a severe disorder of postnatal brain development caused by neuron-specific loss of the HECT
(homologous to E6AP carboxy terminus) domain E3 ubiquitin ligase Ube3aE6AP The cellular role of Ube3a remains
enigmatic despite recent descriptions of synaptic and behavioral deficits in AS mouse models Although neuron-specific
imprinting is thought to limit the disease to the brain Ube3a is expressed ubiquitously suggesting a broader role in cellular
function In the current study we demonstrate a profound structural disruption and cisternal swelling of the Golgi apparatus
(GA) in the cortex of AS (UBE3A(m-p+)) mice In Ube3a knockdown cell lines and UBE3A(m-p+) cortical neurons the GA is
severely under-acidified leading to osmotic swelling Both in vitro and in vivo the loss of Ube3a and corresponding elevated
pH of the GA is associated with a marked reduction in protein sialylation a process highly dependent on intralumenal Golgi
pH Altered ion homeostasis of the GA may provide a common cellular pathophysiology underlying the diverse plasticity and
neurodevelopmental deficits associated with AS
10
A Grandmother finds a solution for her granddaughter and all of our kids with Angelman Syndrome
By Lois Carroll
When my growing granddaughter who has AS couldnt be fitted with large enough bibs I took out my sewing machine to
solve the problem I showed the resulting smock to friends and my project Sophies Smocks named after my granddaughter
was born so that many kids with AS could have a free smock
I buy new and gently used turtlenecks and trim Supporters donate their time to help and their money for postage and
materials to keep the project ongoing All the smocks are FREE for individuals with AS I have child size SMALL to adult XL
They are available to others for a donation to cover at least the postage to keep the project going
To get a smock all you have to do is ask by emailing smockscoxnet Give me your childs shirt size plus a name and
mailing address including zip Ill send one as soon as I can Theres no catch and no obligation I mail around the world and
free means free You can check it out at my website httploiscarrollbookscomindexSShtm
Thank you
Grandma Lois
Sophies Smocks
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
Clinical Trial of Low Glycemic Index Treatment proves effective for reducing seizures by 80 ndash 90
Dr Thibert and Dr Elizabeth Thiele (both are members of the Scientific Advisory board for the Angelman Syndrome
Foundation) were able to launch a clinical study to determine the efficacy of the Low Glycemic Index Treatment in
reducing seizures in individuals with Angelman Syndrome In July 2012 the results were in and published in
Epilepsia and in the Angelman Syndrome Foundation newsletter
Epilepsia link httponlinelibrarywileycomdoi101111j1528-1167201203537xabstract
PubMed link httpwwwncbinlmnihgovpubmed22779920
You can read my interview with Dr Thibert on my blog wwwMeetTheFamiliesofASblogspotcom
11
NEW DEVELOPMENTS AT THE ANGELMAN SYNDROME FOUNDATION
Angelman Syndrome Foundation Invests $125 Million in AS ResearchDue to your support the Angelman Syndrome Foundation is able to award more than $125 million in grants for AS research this current grant cycle This yearrsquos funded research will contribute to all future AS preclinical and clinical trials helping move AS research closer to developing treatments for individuals with AS while furthering the research communityrsquos understanding of the complexities of AS Thanks to you this yearrsquos funded research will seek to define the optimal window for potential treatment further understanding of varying UBE3A gene mutations and deletions and determine if a current FDA-approved drug is a viable treatment in an AS mouse model
ASF Biennial Conference Your Ultimate AS ResourceThe Angelman Syndrome Foundationrsquos 2013 Biennial Conference Championing Progress will be held July 23-26 at the Walt Disney World Swan amp Dolphin resort in Orlando Florida As a central resource for your familyrsquos unique needs and those of your loved one with AS the Conference addresses all aspects of living with AS and provides the opportunity to network and learn from a variety of experts and keynote speakers attend breakout sessions and participate in collaborative opportunities with other families
iPads For ASTo help individuals with AS overcome some of the challenges associated with communication the Angelman Syndrome Foundation has launched the iPads For AS program which provides Applereg iPadsreg for up to 100 individuals who qualify for the program Requirements for
participation include working with a speech pathologist and conducting quarterly assessments among others
ASF Honors Your InvestmentDue to your support and that of more than 7000 volunteers during the last 21 years the Angelman Syndrome Foundation has been able to
bull Providemorethan250000individuals with information support and connections to resources
bull Raisemorethan$125million to fund research and provide direct support to individuals affected by AS
bull Grantmorethan$58millionto more than 70 research endeavors to support a diverse set of research projects
bull Holdmorethan186individualwalks in 42 cities across the country that have been attended by more than 52000 individuals
The Angelman Syndrome Foundation is honored to serve as a resource to the AS community and welcomes any individual touched by AS to contact the organization
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Thank you for your supportThe 2013 Angelman Syndrome Foundation National Walk boasted record participation with more than 11700 individuals who to date have raised more than $1 million towards the $11 million fundraising goal Fundraising continues through September 30 The Angelman Syndrome Foundation is deeply grateful for the time energy and support that you and the AS community invested to raise these funds that provide direct support to individuals with AS and their families through programs resources and networking opportunities and that fund research that will help lead to a cure for AS
The Power of Cooking
Angelman syndrome ketogenic diets and LGIT
By Sybille Kraft Bellamy
One of the best ways to naturally help our angels is by giving them a
nutritious healthy diet
Our angels are fragile and very sensitive to their environment
Little things minor changes can trigger dramatic consequences
Each child is unique each parent is special
We have to rediscover the power of food
Therapeutic diets like ketogenic diets have been used for years to help
control epilepsy Today the LGIT (Low Glycemic Index Treatment) is
one of the easiest diets to give to our angels It is one of the weapons
we can use to protect them from the multiple risks they face Seizures
are a major and common risk for our angels
The LGIT helps balance and reinforce the energy they need to keep
them happy healthy and at full cognitive capability
The modification of your childrsquos diet can be done one step at a time
Small changes can lead to big improvements
This is a unique opportunity for you MOM and DAD to directly affect
your childrsquos health and quality of life
There is nothing more terrible than to feel helpless when your child is
sick Our Angelrsquos challenges are numerous and it is proven that a
special diet can help avoid many of their complications
The medical community is embracing this form of treatment to remedy
many disorders worldwide The Angelman community is hard at work to
bring awareness of this treatment to our families Resources such as
ldquoAngleman Syndrome Dietrdquo on Facebook and The Charlie Foundation
can provide information and support to help you start taking control of
your childrsquos diet health and wellbeing
LGIT Testimonial - Jay and Joel are my 26 year old identical twin sons who both have Angelman Syndrome
Seizures have always been a huge problem for them at one point they were both having over 250 grandmals a day
and spent almost a year in the hospital trying to get them controlled Doctors at that time only gave them a 1
chance to survive Now at age 26 Joelrsquos seizures are well controlled with meds but Jayrsquos have never been controlled
In March we started the LGIT after talking to his Dr and getting a lot of support and advice from Sybille Since
starting the diet we have seen a huge decrease in the amount and severity of Jayrsquos seizures Before the diet he
would have 10-20 seizures a week and need a rescue med 3x a week and now he may have only 4-5 seizures a
month Prior to starting the LGIT Jayrsquos seizures were very intense grandmals where he would stop breathing and turn
blue each time and he would have several in a row we have not seen him turn blue or stop breathing since the diet I
believe the diet is helping him tremendously and he is much more alert and vocal Their neurologist has begun
weaning Joel off of one of his seizure meds because of the side effects and we have now started Joel on the LGIT
diet also and he too is acting more alert and vocal (and no seizures) - Lisa Truax-Murphy
Recipes can be found on
Facebookcomangelmansyndromediet
13
LGIT Testimonial - Anna had a terrible start She could not drink and because of this she was hospitalized 3 weeks
after her birth They soon discovered she had epilepsy and here in The Netherlands I understood almost all babies with
epilepsy get Phenobarbital Because I was not satisfied with the care Anna received we decided to move to another
hospital So almost 6 months later the new neurologist advised us to stop with Phenobarbital and start with Keppra
And it was a good choice When Anna was 1 year old she finally got diagnosed Angelman Syndrome With Keppra
we succeeded to keep her seizure free for almost 2 years When the seizures came back we started with Rivotril
(Clonazepam) in addition to the Keppra and it helped her for 2 years but then the seizures came back again Her
neurologist advised us to start with a third drug but we didnrsquot want to give her more medicine At the same time I read
the research article about the LGIT and I got enthusiastic about it I had to give it a try Annarsquos neurologist was a bit
suspicious but I insisted so he helped us The first month was terrible Anna got more seizures and was very tired I was
so afraid I was only complicating her life instead of helping her I was so down that I just wanted to stop the diet But
after a long phone call with Sybille Kraft I decided to continue the diet for just a few more weeks And Irsquom so happy we
did this A week later Annarsquos absences were gone She started to walk again became more alert And the best thing
of all was that for the first time in her life she slept for 6 hours without waking This was so amazing
The LGIT made a big change in Annarsquos life She is able to concentrate shersquos more active and sleeps better Its just
amazing At first the diet appears very complicated This is because we are so used to eating a lot of bread sugar and
processed food If you just use fresh vegetables meat eggs and fish you can easily cook something very healthy tasty
and LGIT When travelling we always take our own food with us for Anna and there is always something on the menu in
a restaurant that she can eat
-Violeta Giurgi
Summer Time is a great time to find your local farmerrsquos market and buy fresh fruits amp veggies
14
Angels in Action
Angels in Action is where you will read about the inspiring stories of the success in gained skills and abilities by our loved ones with
Angelman Syndrome Written by the families we join in celebrating the abilities no matter how big or small We believe it is
important to inspire everyone with these real stories of our endearingly termed lsquoAngels in Actionrsquo
Possibilities abound when we have a vision By Karen VanPuyenbroeck of Illinois
Angel Mom to Krista 10 years old AS UPD
When I was asked by our Editor In Chief Lizzie Sordia to write a piece about Kristas abilities for this section I asked myself what
were my burning questions about how to develop abilities in my daughter and for me I just really wanted to figure out how I could
teach her to speak I knew that there had to be a way and I obsessed on this topic for hours days months and yes even years It
took me quite a while to find an angel with functional speech but I found him and once I found him I knew that it was possible for my
angel to speak too I wanted to know how it was possible And the big lesson that I learned from Richies mom Dawn was that they
first believed that he could develop this ability and so did his therapists From that point on I developed my own belief and eliminated
therapists who did not support my vision for my daughter of verbal communication and unfortunately for me this meant that Krista
received no speech therapy for a time and mom became her therapist with the help of a program called NACD Through NACD I
learned that an unskilled parent who was willing to learn how to implement therapy who would spend many hours per week
implementing therapy and who could maintain the vision for their child was preferable to a highly skilled professional therapist who
could only spend an hour per week with my child and who did not share my vision
Today at age 10 Krista speaks over a hundred words and has quite a few phrases her speech has been referred to as functional
by her school and by the last two speech therapists who have evaluated her Kristas favorite and most consistent phrase over the
years has been I love you and if those were the only words that I had ever heard spoken from the lips of my angel all of the energy
that we have put into her healing program would have been worth it and I would do hundreds of times over again
Heres how we did it
1 We cultivated belief I have to credit my husband Steve for this This angel Daddy always knew that his girl was A-ok And to my
kids Nana who said simply if you want her to speak we will teach her to speak Because Nana has adult twin boys with autism as
a result of Urea Cycle Disorder I knew that she knew exactly what she was talking about and so I believed her Kristas older
siblings played an essential role by always speaking to her as if she could speak back
2 I tossed out any lsquoDebbie Downerrsquo therapists or health care providers in her life at times this meant that she did not receive
certain therapies at all but again I had come to understand that it was better that I work with her with all of my love support and
belief than it was for a professional who didnt see things that way
3 I only shared my vision for my daughter with people who believed in her ability well meaning friends and relatives may want to
help you accept your childs limitations I finally came to understand that this was their position and realized that pushing the issue
was only baiting them into an oh you poor dear its sad that you have not come to terms with your childs disability type of lecture
4 Gluten and Casein free diet baby Thanks to a miraculous accident I bought the wrong Autism book at Barnes and Noble called
Unraveling The Mystery of Autism by author Karyn Seroussi This started us on an amazing journey that lead us to the wonderful
discovery that by removing these offending proteins my daughters health would improve drastically and as a result of her improved
health status Krista gained many wonderful skills much too many to mention here but improved speech was definitely a biggie
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
15
5 At 5 orsquoclock sharp every morning Krista liked to crawl out of my bed and venture off to her play room
where shed play with blocks and just adored taking things apart During this play time I would get down
on the floor with her grab a block put it near my mouth and just repeatedly say Mama The toy was
used to bring her attention to my mouth a technique that I learned while researching the Son-Rise
program This developed into me singing Mama over and over again and pretty soon my girl was
saying Mama so Id check in with her daily to make sure that she still had Mama down pat and I then
moved on to Dada and Baba etc Some words came very easily and some did not but I remained
grateful for every word or approximation that this angel girl could produce never giving a second
thought to the ones that were really tough for her Always referring to her speech as developing
6 Through Glenn Domans book What to do About Your Brain Injured Child (Brain injury in this context
referring to any condition affecting your childs cognitive ability) I learned that I should listen out for
different sounds that she would make for example many babies will babble mmm You catch the child
saying mmm and you sit him down and say I have noticed that you can say mmm Now we will take
that mmm sound and it will mean Mama In this scenario every time you hear the child babble
mmm you will quickly reinforce this by saying something like You said Mama I love it when you say
Mama You called me and I came My Krista is very high intensity and responds very well to intense
animated and even loud praise so this method has proven very effective for us
7 Good probiotics to clear up yeast in the gut and to help to heal Kristas gut was essential
8 Krista gained even more speech while participating in the Angelman Syndrome Supplement Trial
9 We used MB12 shots with much success in Krista learning to string together longer sentences
10 Lastly in recent months Lizzie talked me into supplementing with a fish oil that is specifically
formulated to aid in speech development We saw great results I learned quite a bit about therapeutic
dosing of fish oil at Integrative Nutrition where Dr Sears of The Zone Diet was a guest lecturer and huge
advocate for this approach From this I learned that Krista needed about three times the amount of fish
oil than what is recommended for general health in order to be able to see an increase in ability for
speech
My determination for Krista to learn to speak started when she was a mere baby she is now 10 and Im
still learning and remaining open to safe and effective ways of helping her in the area of speech as well
as many other areas of her life that will help her to become an independent young lady
If you are reading this and feeling a bit bummed out that you were not as convinced about the speech
thing as I was or you feel like oh had I only been that determined maybe I would be hearing my sweet
Angels voice Let me say this DO NOT feel that way There was something that seemed out of
reach for your Angel that you were able to help him or her accomplish that I may have not been able to
help my daughter to accomplish We only have so much energy to expend in a day I chose to expend it
on speech Another parent might be more consumed by helping their child to gain the ability to walk
independently maybe you always envisioned your angel riding a bike or reading whatever it is I hope
our story encourages you to cultivate a belief and unwavering faith that will lead to the achievement of
yours and more importantly your Angels dreams
Written by
Karen VanPuyenbroeck
Angelman Today Magazine
Associate Editor
KarenAngelmantodayGmailcom
Karen is a certified Health Coach providing Nutrition Counseling services to the special needs
community with a focus on Angelman syndrome To learn more about her services visit her website at wwwAngelFoodsbyKarencom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
16
17
Social Security Disability Benefits and Angelman Syndrome Angelman Syndrome (AS) is a complex genetic disorder characterized by developmental delays and neurological
problems Children with AS often require around-the-clock care for their entire lives
Parents of children who have AS often dedicate extra time energy and even money to provide a high quality of life for
their child Assistive technology supportive care and specialty medical treatments rack up expenses quickly Parents
may even find it necessary to take time away from work to be with their child The resulting loss of income and lack of
medical insurances can be financially devastating
If your child has been diagnosed with Angelman Syndrome he or she may qualify for financial assistance in the form of
Social Security Disability (SSD) benefits SSD payments can be used to cover your childrsquos expensesmdashincluding anything
from food to supportive services to medical bills
The following article will give you a basic overview of the options available to your family and will provide you with the
information needed to begin the SSD application process
Compassionate Allowances and Angelman Syndrome
Typically the SSD application process can take months or even years to complete Fortunately the SSA recognizes that
individuals with severely disabling conditions may not be able to wait that long to receive disability benefits For this
reason the SSA offers Compassionate Allowances (CAL) processing to individuals with certain disabilities Applicants
who have been diagnosed with conditions covered by the CAL program can receive SSD benefits in as little as 10 days
Angelman Syndrome is one of approximately 200 conditions that qualify for CAL processing You will not need to fill out
additional paperwork or request to receive CAL processing The SSA will evaluate your childrsquos claim and expedite it
accordingly
Social Security Disability Insurance and Supplemental Security Income
The SSA offers disability benefits through two separate programsmdashSSDI and SSI Each of these programs has very
specific technical eligibility requirements
SSDI stands for Social Security Disability Insurance and provides benefits to disabled workers Eligibility for SSDI is
dependent on an applicantrsquos employment history as well as the amount of taxes he or she has paid into the system
Children and young adults donrsquot often qualify for SSDI on their own record because they havenrsquot had the chance to work
and pay into the program
It is important to note that if the childrsquos parent is qualified for SSDI or retirement benefits the child may qualify for
dependent benefits based on a parent or guardianrsquos earnings record If your child is technically an adult but was
diagnosed with Angelman Syndrome before age 22 he or she is considered to be an adult child Adult children may also
qualify for a childrsquos dependent benefits
SSI stands for Supplemental Security Income SSI is a needs-based program that provides financial assistance to elderly
or disabled individuals who earn very little income Eligibility for SSI is based on financial need not employment history
To qualify applicants cannot exceed specific financial limitations set in place by the SSA
In the case of a child a portion of his or her parentrsquos income will be ldquodeemedrdquo This means that the SSA will evaluate the
deemed income to determine whether or not the child meets the SSI financial eligibility requirements Deeming occurs
for children who are under the age of 18 unmarried and still live with a parent or guardian Parentsrsquo earned income
unearned income and financial resources will all be taken into consideration
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
18
Income and resources that will not be deemed includes the following
Welfare payments
Public Income Maintenance (PIM) including Temporary Assistance to Needy Families (TANF) and VA pension for
veterans
Food stamps
Disaster assistance
Foster care payments
Tax refunds on real property (property that includes land andor buildings)
Home grown produce used for personal consumption
The SSA also makes the following allowances for living expensesmdashmeaning that the following will be deducted from the
amount of income deemed to your child
$365 a month for each additional child that you support
$710 a month for a single parent or $1066 for two parents
It is important to note that this amount will not be subtracted for parents or children who already receive public assistance
Once your child turns 18 SSI payments will be based on his or her own earnings record
Medical Requirements
In addition to the previously mentioned technical requirements your child must also meet very specific medical
requirements to qualify for disability benefits The requirements can be found in a publication known as the ldquoblue bookrdquo
The SSArsquos blue book contains listings for potentially disabling conditions as well as the specific medical criteria an
applicant must meet to qualify under each condition
The SSA has separate listings for adults and children The specific medical requirement that your child will have to meet is
dependent on his or her age Your child will have to meet one or more of the following blue book listings to qualify for
disability benefits
Section 1205mdashMental Retardation (Adult)
Section 11205 ndash Mental retardation (Child)
Section 11008 B ndash Catastrophic Congenital Disorder (Child)
You can access these specific listings on the SSArsquos website
Preparing for the Social Security Disability Application Process
Even though your child qualifies for the Compassionate Allowances program you will still have to provide thorough medical
evidence that proves the extent of your childrsquos condition Medical evidence should include records of your childrsquos diagnosis
treatments response to treatments hospitalization records and medical test results You should also collect statements
from professional adults that interact with your child on a daily basis This can include doctors teachers and therapists
These statements should provide details about your childrsquos limitations and abilities
The SSA may also ask for evidence of the following
Your childrsquos inability to perform age appropriate functions
IQ test results showing a marked developmental deficit based on age
Other developmental delays and impairments in physical and mental functioning again based on age
You should collect these documents prior to beginning the application process to prevent any delays in the processing of
your childrsquos claim
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
19
Starting Your Application
The SSD application procedures will differ depending on whether you are filing for SSI benefits or SSDI dependent
benefits
If you are interested in learning more about dependent benefits you should call the SSArsquos main phone line (1-800-
772-1213) or contact the representative who handles the eligible parentrsquos claim
To apply for SSI benefits on behalf of a child you will be asked to complete two forms the ldquoApplication for
Supplemental Security Incomerdquo and the ldquoChild Disability Reportrdquo Currently only the child disability report can be
completed online You will have to schedule an appointment with your local Social Security office to complete the
application for SSI
If you are applying for SSI on behalf of an adult you will have to complete the same process with an ldquoAdult
Disability Reportrdquo rather than a child disability report
It is important that you realize how overwhelming and complicated the SSD application process may become In
fact many initial applications are denied and require the applicant to request an appeal hearing If your childrsquos
application is denied do not give up The key to receiving disability benefits it to be persistent in your efforts
For more information about applying for disability benefits visit Social Security Disability Help (wwwdisability-
benefits-helporg) or contact Molly Clarke at macssd-helporg
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
20
READ MORE ABOUT OUR ACTIVITIES AND BROWSE THE
INFORMATION PAGES HERE
httpangelmannetworkwordpresscom
Our successful International Angelman Day celebrations
held across the country
httpangelmannetworkwordpresscomlearn-
aboutwhat-is-the-angelman-network
For up to date info on Therapies
httpangelmannetworkwordpresscomtherapy-for-as
For information and ideas regarding Communication
httpangelmannetworkwordpresscomeducation-and-
communication
For general information on Epilepsy in AS
httpangelmannetworkwordpresscomangelman-
syndromeangelman-syndrome-epilepsy
The Angelman Network was
established in New Zealand as a
Charitable Trust in 2011 (CC46746)
We seek to connect and support
people impacted by Angelman
Syndrome
++++++++++++++
We are New Zealandrsquos only organisation
solely dedicated to promoting
awareness for Angelman Syndrome
and to actively promote and support
the progress being made with world-
wide research on AS
++++++++++++++
Our Information Pages are
regularly updated to include
newimproved ideas and links as
these become available
+++++++++++++++
Our aim is to offer an active and
accurate website which will become
a helpful resource for families and
provide useful and reliable information
for medical and educational
professionals both in
NZ and around the world
WE ARE ON FACEBOOK AT
Non-profit page
httpswwwfacebookcomtheangelmann
etwork
Informal group
httpswwwfacebookcomgroups10468
6089609200
Our ACTION ANGEL TEAM is an informal fundraising group who regularly raise funds and awareness for Angelman Syndrome by running in local races wearing their signature white wings
22
Shea teaches himself to read By Carol Pulver of Florida
Angel Mom to Shea 22 years old AS Del +
Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery
followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done
shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful
Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding
and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a
speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him
to sustain a suck for more than a few seconds
At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory
issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the
milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was
just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately
schedule a neurology consultation get an EEG and do blood work to check for abnormalities
Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family
pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with
the neurologist and the blood work we received some answers
I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old
The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He
told us that our son would never be able to walk to talk or to function as our other children and that we might as well
ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I
sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless
We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do
everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but
the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear
I want to share some of the things wersquove learned along this journey
1 Always trust your intuition No one knows your Angel(s) as well as you do
2 Never put a limit on your Angelrsquos abilities
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
23
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
ldquoThe words of advice I offer newly diagnosed families today starts out a little different than it did a few years ago In the past I might have
suggested parents not jump into researching the syndrome and to ignore the majority of what has been written by experts Today
there is a multitude of valuable information available and it is written by the true experts the parents of the Angelman Syndrome
Community Do your research Read all you can Join the online support groups and ask questions Find local families and meet their
families You are going to see a wide variety of personalities abilities opinions and you are going to feel right at home
Here are a few tried and true words of advice that I still share because they have stood the test of time
1 Never underestimate your child and do not base your expectations on the evaluations of others
2 Your child is your child and unless you are neglecting or endangering your child that does not change because of a diagnosis There
are many people out there who think they know best but a parents instinct and the intimate knowledge they have of their child serves as
the best indicator of what is right and of what needs to be done
3 No matter what the numbers say your child is still one of a kind and always will be A diagnosis is a way of helping you help your child
but it does not define your child or your family Your child has a syndrome The syndrome does not have your child
4 Be a family first Try not to let a diagnosis consume you 247 therapy is not healthy for anyone Love and play are the best gifts you
can give your child and are the best stimulants for growth and development
5 Take care of yourself Take care of your spouse and take care of your other children It is easy to focus on your child with a diagnosis
and not realize you have let other things go We have all tried to be the strong one and prove we can do this but I assure you the earlier
you learn to allow others to help out the easier it will be
6 There will be good days and bad days Your emotions will betray you when you least expect it You will experience the highest and
lowest of emotions and sometimes on the same day You will sweat the small stuff and you will celebrate the small stuff You have
joined a community that will be here for all of this and we will understandrdquo
Brenda Dixon Mississippi
Jonathan - 33yrs AS Del+
ldquoNever accept a doctor telling you that your child lsquowont be able torsquo
Never under estimate you childs potential--our kids love to learn Always
have faith in your gut instinctsMomma (or Daddy) usually knows best
Look forward with faith in the advances and treatments that are on the
horizon but as you struggle (from time to time) in your daily life with an
Angel (and there will be struggles) know that you are not alone--we are
all in this together Dont be afraid to ask questions Support tears
cheers and hugs are just a phone call or Facebook post away Take time
each day to recognize the blessings in your life Enjoy your Angel hugsrdquo
Carol Pulver Florida
Shea Pulver - 22yrs AS Del+
ldquoDont allow anyone even yourself to see a diagnosis instead of a child A child needs a parent more than a therapist or researcher
Yes we need to wear several hats to be good parents - but from your childs point of view he really needs Mommy and Daddy more
than DrTherapistresearcheradvocate - he only has ONE parent or set of parents Sometimes we get so caught up in helping them
that we forget the main point which is to be there physically and emotionally for them From the start concentrate on communication and
functional skills These things cannot wait until theyre older Typical children start learning those things immediately and nobody says
oh wait I dont know how to communicate with you yet - I need to take a class or oh wait youll have to learn to potty train or pull your
pants up and down when youre 15 (and 6 feet tall) its more natural to just hand-over-hand those motions from a very early age and
present communication pictures (or even the objects themselves to choose from) as a matter of course as you go about your day (This
is Dora this is a book - which one would you like)
If it takes years to develop the actual skills its better to start at age 2 and have that skill when theyre 12 then to start at age 12 to teach
skillswhen theyve already got ingrained habits and learned helplessness from having everything done for them Believe my aching
back when I say teaching a child to crawl into his carseat early on will save a lot of wear and tear on your body Kids with special needs
get just as much joy and confidence from doing for themselves as anyone You never know until you try Read Disability is Natural by
Kathie Snow This is common sense advice for parents of special needs kids that they really need to hearrdquo
Lulu Carpenter California
Simon - 23 yrs AS
Words Of
Wisdom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
8
Interested in what research has been published about AS Dr Ed Weeber will tell us how we can search for information and some of the
latest research happening around the globe
How can you get published scientific articles concerning Angelman syndrome research By accessing the free data base
called PubMed (wwwpubmedgov) This valuable resource is developed and maintained by the National Center for
Biotechnology Information (NCBI) at the National Library of Medicine (NLM) and contains more than 20 million references
to scientific articles The search function allows single or multiple terms to narrow the number of ldquohitsrdquo In addition you can
search for authors in order to find all of the publications from a specific researcher Many of these publications are free
and all of them have an abstract to describe the research
A search for the term ldquoAngelman syndromerdquo will reveal 1300 publications with the earliest dating back to 1950 To make
the science a little easier to digest every issue will present a selection of the latest published scientific articles with
Angelman syndrome in the title abstract or key words section of the paper Below are some recent papers that have come
out in the last few months
Title Recurrent fractures as a new skeletal problem in the course of Angelman syndrome
Journal Bone
Authors Rusińska A Dzwonek AB Chlebna-Sokoacuteł D
Department of Pediatric Propedeutics and Metabolic Bone Diseases Medical University of Lodz Poland Maria
Konopnicka Memorial Teaching Hospital No 4 Medical University of Lodz Poland
Abstract
Angelman syndrome is a genetically inherited syndrome with severe retardation of psychomotor development and speech
disturbances usually accompanied by epilepsy typical dysmorphic features and some skeletal symptoms The aim of the
current report is to present new skeletal symptoms which may occur in the course of AS based on a case report of an 8-
year-old girl with confirmed 15q1112 microdeletion and recurrent low-trauma bone fractures According to our knowledge it
is the first report of such skeletal symptoms in patient with a diagnosis of AS
Title Role of the ubiquitin ligase E6APUBE3A in controlling levels of the synaptic protein Arc
Journal Proc Natl Acad Sci U S A
Authors Kuumlhnle S Mothes B Matentzoglu K Scheffner M
Department of Biology and Konstanz Research School Chemical Biology University of Konstanz 78457 Konstanz
Germany
Abstract
Inactivation of the ubiquitin ligase E6 associated protein (E6AP) encoded by the UBE3A gene has been associated with
development of the Angelman syndrome Recently it was reported that in mice loss of E6AP expression results in
increased levels of the synaptic protein Arc and a concomitant impaired synaptic function providing an explanation for
some phenotypic features of Angelman syndrome patients Accordingly E6AP has been shown to negatively regulate
activity-regulated cytoskeleton-associated protein (Arc) and it has been suggested that E6AP targets Arc for ubiquitination
and degradation In our study we provide evidence that Arc is not a direct substrate for E6AP and binds only weakly to
E6AP if at all Furthermore we show that down-regulation of E6AP expression stimulates estradiol-induced transcription
of the Arc gene Thus we propose that Arc protein levels are controlled by E6AP at the transcriptional rather than at the
posttranslational level
Title Proteomic profiling in Drosophila reveals potential Dube3a regulation of the actin cytoskeleton and neuronal
homeostasis
Journal PLoS One
Authors Jensen L Farook MF Reiter LT
Department of Neurology University of Tennessee Health Science Center Memphis Tennessee United States of
America 9
Abstract
The molecular defects associated with Angelman syndrome (AS) and 15q duplication autism are directly correlated to
expression levels of the E3 ubiquitin ligase protein UBE3A Here we used Drosophila melanogaster to screen for the targets
of this ubiquitin ligase under conditions of both decreased (as in AS) or increased (as in dup(15)) levels of the fly Dube3a or
human UBE3A proteins Using liquid phase isoelectric focusing of proteins from whole fly head extracts we identified a total of
50 proteins that show changes in protein and in some cases transcriptional levels when Dube3a fluctuates We analyzed
head extracts from cytoplasmic nuclear and membrane fractions for Dube3a regulated proteins Our results indicate that
Dube3a is involved in the regulation of cellular functions related to ATP synthesismetabolism actin cytoskeletal integrity
both catabolism and carbohydrate metabolism as well as nervous system development and function Sixty-two percent of the
proteins were gt50 identical to homologous human proteins and 8 have previously be shown to be ubiquitinated in the fly
nervous system Eight proteins may be regulated by Dube3a at the transcript level through the transcriptional co-activation
function of Dube3a We investigated one autism-associated protein ATPα and found that it can be ubiquitinated in a Dube3a
dependent manner We also found that Dube3a mutants have significantly less filamentous actin than wild type larvae
consistent with the identification of actin targets regulated by Dube3a The identification of UBE3A targets is the first step in
unraveling the molecular etiology of AS and duplication 15q autism
Title Discrimination training reduces high rate social approach behaviors in Angelman syndrome proof of principle
Journal Res Dev Disabil
Authors Heald M Allen D Villa D Oliver C
Cerebra Centre for Neurodevelopmental Disorders School of Psychology University of Birmingham Edgbaston B15 2TT
UK mxo988bhamacuk
Abstract
This proof of principle study was designed to evaluate whether excessively high rates of social approach behaviors in children
with Angelman syndrome (AS) can be modified using a multiple schedule design Four children with AS were exposed to a
multiple schedule arrangement in which social reinforcement and extinction cued using a novel stimulus were alternated
Twenty-five to 35 discrimination training sessions were conducted and levels of approach behaviors were measured before
and after the discrimination training for two children All four participants evidenced discrimination between conditions of
reinforcement and extinction after 16-20 teaching sessions as indicated by lower rates of social approach behaviors in the
presence of the S(Δ) for extinction Reversal effects for the two children for whom this design was implemented were evident
The results demonstrate that after repeated training the use of a novel stimulus can serve as a cue for children with AS to
discriminate adult availability This is a potentially effective component of a broader intervention strategy but highlights the
need for sustained teaching procedures within this population
Title The Angelman syndrome protein Ube3aE6AP is required for Golgi acidification and surface protein sialylation
Journal J Neurosci
Authors Condon KH Ho J Robinson CG Hanus C Ehlers MD
Department of Neurobiology Duke University Medical Center Durham North Carolina 27710 USA
Abstract
Angelman syndrome (AS) is a severe disorder of postnatal brain development caused by neuron-specific loss of the HECT
(homologous to E6AP carboxy terminus) domain E3 ubiquitin ligase Ube3aE6AP The cellular role of Ube3a remains
enigmatic despite recent descriptions of synaptic and behavioral deficits in AS mouse models Although neuron-specific
imprinting is thought to limit the disease to the brain Ube3a is expressed ubiquitously suggesting a broader role in cellular
function In the current study we demonstrate a profound structural disruption and cisternal swelling of the Golgi apparatus
(GA) in the cortex of AS (UBE3A(m-p+)) mice In Ube3a knockdown cell lines and UBE3A(m-p+) cortical neurons the GA is
severely under-acidified leading to osmotic swelling Both in vitro and in vivo the loss of Ube3a and corresponding elevated
pH of the GA is associated with a marked reduction in protein sialylation a process highly dependent on intralumenal Golgi
pH Altered ion homeostasis of the GA may provide a common cellular pathophysiology underlying the diverse plasticity and
neurodevelopmental deficits associated with AS
10
A Grandmother finds a solution for her granddaughter and all of our kids with Angelman Syndrome
By Lois Carroll
When my growing granddaughter who has AS couldnt be fitted with large enough bibs I took out my sewing machine to
solve the problem I showed the resulting smock to friends and my project Sophies Smocks named after my granddaughter
was born so that many kids with AS could have a free smock
I buy new and gently used turtlenecks and trim Supporters donate their time to help and their money for postage and
materials to keep the project ongoing All the smocks are FREE for individuals with AS I have child size SMALL to adult XL
They are available to others for a donation to cover at least the postage to keep the project going
To get a smock all you have to do is ask by emailing smockscoxnet Give me your childs shirt size plus a name and
mailing address including zip Ill send one as soon as I can Theres no catch and no obligation I mail around the world and
free means free You can check it out at my website httploiscarrollbookscomindexSShtm
Thank you
Grandma Lois
Sophies Smocks
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
Clinical Trial of Low Glycemic Index Treatment proves effective for reducing seizures by 80 ndash 90
Dr Thibert and Dr Elizabeth Thiele (both are members of the Scientific Advisory board for the Angelman Syndrome
Foundation) were able to launch a clinical study to determine the efficacy of the Low Glycemic Index Treatment in
reducing seizures in individuals with Angelman Syndrome In July 2012 the results were in and published in
Epilepsia and in the Angelman Syndrome Foundation newsletter
Epilepsia link httponlinelibrarywileycomdoi101111j1528-1167201203537xabstract
PubMed link httpwwwncbinlmnihgovpubmed22779920
You can read my interview with Dr Thibert on my blog wwwMeetTheFamiliesofASblogspotcom
11
NEW DEVELOPMENTS AT THE ANGELMAN SYNDROME FOUNDATION
Angelman Syndrome Foundation Invests $125 Million in AS ResearchDue to your support the Angelman Syndrome Foundation is able to award more than $125 million in grants for AS research this current grant cycle This yearrsquos funded research will contribute to all future AS preclinical and clinical trials helping move AS research closer to developing treatments for individuals with AS while furthering the research communityrsquos understanding of the complexities of AS Thanks to you this yearrsquos funded research will seek to define the optimal window for potential treatment further understanding of varying UBE3A gene mutations and deletions and determine if a current FDA-approved drug is a viable treatment in an AS mouse model
ASF Biennial Conference Your Ultimate AS ResourceThe Angelman Syndrome Foundationrsquos 2013 Biennial Conference Championing Progress will be held July 23-26 at the Walt Disney World Swan amp Dolphin resort in Orlando Florida As a central resource for your familyrsquos unique needs and those of your loved one with AS the Conference addresses all aspects of living with AS and provides the opportunity to network and learn from a variety of experts and keynote speakers attend breakout sessions and participate in collaborative opportunities with other families
iPads For ASTo help individuals with AS overcome some of the challenges associated with communication the Angelman Syndrome Foundation has launched the iPads For AS program which provides Applereg iPadsreg for up to 100 individuals who qualify for the program Requirements for
participation include working with a speech pathologist and conducting quarterly assessments among others
ASF Honors Your InvestmentDue to your support and that of more than 7000 volunteers during the last 21 years the Angelman Syndrome Foundation has been able to
bull Providemorethan250000individuals with information support and connections to resources
bull Raisemorethan$125million to fund research and provide direct support to individuals affected by AS
bull Grantmorethan$58millionto more than 70 research endeavors to support a diverse set of research projects
bull Holdmorethan186individualwalks in 42 cities across the country that have been attended by more than 52000 individuals
The Angelman Syndrome Foundation is honored to serve as a resource to the AS community and welcomes any individual touched by AS to contact the organization
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Thank you for your supportThe 2013 Angelman Syndrome Foundation National Walk boasted record participation with more than 11700 individuals who to date have raised more than $1 million towards the $11 million fundraising goal Fundraising continues through September 30 The Angelman Syndrome Foundation is deeply grateful for the time energy and support that you and the AS community invested to raise these funds that provide direct support to individuals with AS and their families through programs resources and networking opportunities and that fund research that will help lead to a cure for AS
The Power of Cooking
Angelman syndrome ketogenic diets and LGIT
By Sybille Kraft Bellamy
One of the best ways to naturally help our angels is by giving them a
nutritious healthy diet
Our angels are fragile and very sensitive to their environment
Little things minor changes can trigger dramatic consequences
Each child is unique each parent is special
We have to rediscover the power of food
Therapeutic diets like ketogenic diets have been used for years to help
control epilepsy Today the LGIT (Low Glycemic Index Treatment) is
one of the easiest diets to give to our angels It is one of the weapons
we can use to protect them from the multiple risks they face Seizures
are a major and common risk for our angels
The LGIT helps balance and reinforce the energy they need to keep
them happy healthy and at full cognitive capability
The modification of your childrsquos diet can be done one step at a time
Small changes can lead to big improvements
This is a unique opportunity for you MOM and DAD to directly affect
your childrsquos health and quality of life
There is nothing more terrible than to feel helpless when your child is
sick Our Angelrsquos challenges are numerous and it is proven that a
special diet can help avoid many of their complications
The medical community is embracing this form of treatment to remedy
many disorders worldwide The Angelman community is hard at work to
bring awareness of this treatment to our families Resources such as
ldquoAngleman Syndrome Dietrdquo on Facebook and The Charlie Foundation
can provide information and support to help you start taking control of
your childrsquos diet health and wellbeing
LGIT Testimonial - Jay and Joel are my 26 year old identical twin sons who both have Angelman Syndrome
Seizures have always been a huge problem for them at one point they were both having over 250 grandmals a day
and spent almost a year in the hospital trying to get them controlled Doctors at that time only gave them a 1
chance to survive Now at age 26 Joelrsquos seizures are well controlled with meds but Jayrsquos have never been controlled
In March we started the LGIT after talking to his Dr and getting a lot of support and advice from Sybille Since
starting the diet we have seen a huge decrease in the amount and severity of Jayrsquos seizures Before the diet he
would have 10-20 seizures a week and need a rescue med 3x a week and now he may have only 4-5 seizures a
month Prior to starting the LGIT Jayrsquos seizures were very intense grandmals where he would stop breathing and turn
blue each time and he would have several in a row we have not seen him turn blue or stop breathing since the diet I
believe the diet is helping him tremendously and he is much more alert and vocal Their neurologist has begun
weaning Joel off of one of his seizure meds because of the side effects and we have now started Joel on the LGIT
diet also and he too is acting more alert and vocal (and no seizures) - Lisa Truax-Murphy
Recipes can be found on
Facebookcomangelmansyndromediet
13
LGIT Testimonial - Anna had a terrible start She could not drink and because of this she was hospitalized 3 weeks
after her birth They soon discovered she had epilepsy and here in The Netherlands I understood almost all babies with
epilepsy get Phenobarbital Because I was not satisfied with the care Anna received we decided to move to another
hospital So almost 6 months later the new neurologist advised us to stop with Phenobarbital and start with Keppra
And it was a good choice When Anna was 1 year old she finally got diagnosed Angelman Syndrome With Keppra
we succeeded to keep her seizure free for almost 2 years When the seizures came back we started with Rivotril
(Clonazepam) in addition to the Keppra and it helped her for 2 years but then the seizures came back again Her
neurologist advised us to start with a third drug but we didnrsquot want to give her more medicine At the same time I read
the research article about the LGIT and I got enthusiastic about it I had to give it a try Annarsquos neurologist was a bit
suspicious but I insisted so he helped us The first month was terrible Anna got more seizures and was very tired I was
so afraid I was only complicating her life instead of helping her I was so down that I just wanted to stop the diet But
after a long phone call with Sybille Kraft I decided to continue the diet for just a few more weeks And Irsquom so happy we
did this A week later Annarsquos absences were gone She started to walk again became more alert And the best thing
of all was that for the first time in her life she slept for 6 hours without waking This was so amazing
The LGIT made a big change in Annarsquos life She is able to concentrate shersquos more active and sleeps better Its just
amazing At first the diet appears very complicated This is because we are so used to eating a lot of bread sugar and
processed food If you just use fresh vegetables meat eggs and fish you can easily cook something very healthy tasty
and LGIT When travelling we always take our own food with us for Anna and there is always something on the menu in
a restaurant that she can eat
-Violeta Giurgi
Summer Time is a great time to find your local farmerrsquos market and buy fresh fruits amp veggies
14
Angels in Action
Angels in Action is where you will read about the inspiring stories of the success in gained skills and abilities by our loved ones with
Angelman Syndrome Written by the families we join in celebrating the abilities no matter how big or small We believe it is
important to inspire everyone with these real stories of our endearingly termed lsquoAngels in Actionrsquo
Possibilities abound when we have a vision By Karen VanPuyenbroeck of Illinois
Angel Mom to Krista 10 years old AS UPD
When I was asked by our Editor In Chief Lizzie Sordia to write a piece about Kristas abilities for this section I asked myself what
were my burning questions about how to develop abilities in my daughter and for me I just really wanted to figure out how I could
teach her to speak I knew that there had to be a way and I obsessed on this topic for hours days months and yes even years It
took me quite a while to find an angel with functional speech but I found him and once I found him I knew that it was possible for my
angel to speak too I wanted to know how it was possible And the big lesson that I learned from Richies mom Dawn was that they
first believed that he could develop this ability and so did his therapists From that point on I developed my own belief and eliminated
therapists who did not support my vision for my daughter of verbal communication and unfortunately for me this meant that Krista
received no speech therapy for a time and mom became her therapist with the help of a program called NACD Through NACD I
learned that an unskilled parent who was willing to learn how to implement therapy who would spend many hours per week
implementing therapy and who could maintain the vision for their child was preferable to a highly skilled professional therapist who
could only spend an hour per week with my child and who did not share my vision
Today at age 10 Krista speaks over a hundred words and has quite a few phrases her speech has been referred to as functional
by her school and by the last two speech therapists who have evaluated her Kristas favorite and most consistent phrase over the
years has been I love you and if those were the only words that I had ever heard spoken from the lips of my angel all of the energy
that we have put into her healing program would have been worth it and I would do hundreds of times over again
Heres how we did it
1 We cultivated belief I have to credit my husband Steve for this This angel Daddy always knew that his girl was A-ok And to my
kids Nana who said simply if you want her to speak we will teach her to speak Because Nana has adult twin boys with autism as
a result of Urea Cycle Disorder I knew that she knew exactly what she was talking about and so I believed her Kristas older
siblings played an essential role by always speaking to her as if she could speak back
2 I tossed out any lsquoDebbie Downerrsquo therapists or health care providers in her life at times this meant that she did not receive
certain therapies at all but again I had come to understand that it was better that I work with her with all of my love support and
belief than it was for a professional who didnt see things that way
3 I only shared my vision for my daughter with people who believed in her ability well meaning friends and relatives may want to
help you accept your childs limitations I finally came to understand that this was their position and realized that pushing the issue
was only baiting them into an oh you poor dear its sad that you have not come to terms with your childs disability type of lecture
4 Gluten and Casein free diet baby Thanks to a miraculous accident I bought the wrong Autism book at Barnes and Noble called
Unraveling The Mystery of Autism by author Karyn Seroussi This started us on an amazing journey that lead us to the wonderful
discovery that by removing these offending proteins my daughters health would improve drastically and as a result of her improved
health status Krista gained many wonderful skills much too many to mention here but improved speech was definitely a biggie
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
15
5 At 5 orsquoclock sharp every morning Krista liked to crawl out of my bed and venture off to her play room
where shed play with blocks and just adored taking things apart During this play time I would get down
on the floor with her grab a block put it near my mouth and just repeatedly say Mama The toy was
used to bring her attention to my mouth a technique that I learned while researching the Son-Rise
program This developed into me singing Mama over and over again and pretty soon my girl was
saying Mama so Id check in with her daily to make sure that she still had Mama down pat and I then
moved on to Dada and Baba etc Some words came very easily and some did not but I remained
grateful for every word or approximation that this angel girl could produce never giving a second
thought to the ones that were really tough for her Always referring to her speech as developing
6 Through Glenn Domans book What to do About Your Brain Injured Child (Brain injury in this context
referring to any condition affecting your childs cognitive ability) I learned that I should listen out for
different sounds that she would make for example many babies will babble mmm You catch the child
saying mmm and you sit him down and say I have noticed that you can say mmm Now we will take
that mmm sound and it will mean Mama In this scenario every time you hear the child babble
mmm you will quickly reinforce this by saying something like You said Mama I love it when you say
Mama You called me and I came My Krista is very high intensity and responds very well to intense
animated and even loud praise so this method has proven very effective for us
7 Good probiotics to clear up yeast in the gut and to help to heal Kristas gut was essential
8 Krista gained even more speech while participating in the Angelman Syndrome Supplement Trial
9 We used MB12 shots with much success in Krista learning to string together longer sentences
10 Lastly in recent months Lizzie talked me into supplementing with a fish oil that is specifically
formulated to aid in speech development We saw great results I learned quite a bit about therapeutic
dosing of fish oil at Integrative Nutrition where Dr Sears of The Zone Diet was a guest lecturer and huge
advocate for this approach From this I learned that Krista needed about three times the amount of fish
oil than what is recommended for general health in order to be able to see an increase in ability for
speech
My determination for Krista to learn to speak started when she was a mere baby she is now 10 and Im
still learning and remaining open to safe and effective ways of helping her in the area of speech as well
as many other areas of her life that will help her to become an independent young lady
If you are reading this and feeling a bit bummed out that you were not as convinced about the speech
thing as I was or you feel like oh had I only been that determined maybe I would be hearing my sweet
Angels voice Let me say this DO NOT feel that way There was something that seemed out of
reach for your Angel that you were able to help him or her accomplish that I may have not been able to
help my daughter to accomplish We only have so much energy to expend in a day I chose to expend it
on speech Another parent might be more consumed by helping their child to gain the ability to walk
independently maybe you always envisioned your angel riding a bike or reading whatever it is I hope
our story encourages you to cultivate a belief and unwavering faith that will lead to the achievement of
yours and more importantly your Angels dreams
Written by
Karen VanPuyenbroeck
Angelman Today Magazine
Associate Editor
KarenAngelmantodayGmailcom
Karen is a certified Health Coach providing Nutrition Counseling services to the special needs
community with a focus on Angelman syndrome To learn more about her services visit her website at wwwAngelFoodsbyKarencom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
16
17
Social Security Disability Benefits and Angelman Syndrome Angelman Syndrome (AS) is a complex genetic disorder characterized by developmental delays and neurological
problems Children with AS often require around-the-clock care for their entire lives
Parents of children who have AS often dedicate extra time energy and even money to provide a high quality of life for
their child Assistive technology supportive care and specialty medical treatments rack up expenses quickly Parents
may even find it necessary to take time away from work to be with their child The resulting loss of income and lack of
medical insurances can be financially devastating
If your child has been diagnosed with Angelman Syndrome he or she may qualify for financial assistance in the form of
Social Security Disability (SSD) benefits SSD payments can be used to cover your childrsquos expensesmdashincluding anything
from food to supportive services to medical bills
The following article will give you a basic overview of the options available to your family and will provide you with the
information needed to begin the SSD application process
Compassionate Allowances and Angelman Syndrome
Typically the SSD application process can take months or even years to complete Fortunately the SSA recognizes that
individuals with severely disabling conditions may not be able to wait that long to receive disability benefits For this
reason the SSA offers Compassionate Allowances (CAL) processing to individuals with certain disabilities Applicants
who have been diagnosed with conditions covered by the CAL program can receive SSD benefits in as little as 10 days
Angelman Syndrome is one of approximately 200 conditions that qualify for CAL processing You will not need to fill out
additional paperwork or request to receive CAL processing The SSA will evaluate your childrsquos claim and expedite it
accordingly
Social Security Disability Insurance and Supplemental Security Income
The SSA offers disability benefits through two separate programsmdashSSDI and SSI Each of these programs has very
specific technical eligibility requirements
SSDI stands for Social Security Disability Insurance and provides benefits to disabled workers Eligibility for SSDI is
dependent on an applicantrsquos employment history as well as the amount of taxes he or she has paid into the system
Children and young adults donrsquot often qualify for SSDI on their own record because they havenrsquot had the chance to work
and pay into the program
It is important to note that if the childrsquos parent is qualified for SSDI or retirement benefits the child may qualify for
dependent benefits based on a parent or guardianrsquos earnings record If your child is technically an adult but was
diagnosed with Angelman Syndrome before age 22 he or she is considered to be an adult child Adult children may also
qualify for a childrsquos dependent benefits
SSI stands for Supplemental Security Income SSI is a needs-based program that provides financial assistance to elderly
or disabled individuals who earn very little income Eligibility for SSI is based on financial need not employment history
To qualify applicants cannot exceed specific financial limitations set in place by the SSA
In the case of a child a portion of his or her parentrsquos income will be ldquodeemedrdquo This means that the SSA will evaluate the
deemed income to determine whether or not the child meets the SSI financial eligibility requirements Deeming occurs
for children who are under the age of 18 unmarried and still live with a parent or guardian Parentsrsquo earned income
unearned income and financial resources will all be taken into consideration
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
18
Income and resources that will not be deemed includes the following
Welfare payments
Public Income Maintenance (PIM) including Temporary Assistance to Needy Families (TANF) and VA pension for
veterans
Food stamps
Disaster assistance
Foster care payments
Tax refunds on real property (property that includes land andor buildings)
Home grown produce used for personal consumption
The SSA also makes the following allowances for living expensesmdashmeaning that the following will be deducted from the
amount of income deemed to your child
$365 a month for each additional child that you support
$710 a month for a single parent or $1066 for two parents
It is important to note that this amount will not be subtracted for parents or children who already receive public assistance
Once your child turns 18 SSI payments will be based on his or her own earnings record
Medical Requirements
In addition to the previously mentioned technical requirements your child must also meet very specific medical
requirements to qualify for disability benefits The requirements can be found in a publication known as the ldquoblue bookrdquo
The SSArsquos blue book contains listings for potentially disabling conditions as well as the specific medical criteria an
applicant must meet to qualify under each condition
The SSA has separate listings for adults and children The specific medical requirement that your child will have to meet is
dependent on his or her age Your child will have to meet one or more of the following blue book listings to qualify for
disability benefits
Section 1205mdashMental Retardation (Adult)
Section 11205 ndash Mental retardation (Child)
Section 11008 B ndash Catastrophic Congenital Disorder (Child)
You can access these specific listings on the SSArsquos website
Preparing for the Social Security Disability Application Process
Even though your child qualifies for the Compassionate Allowances program you will still have to provide thorough medical
evidence that proves the extent of your childrsquos condition Medical evidence should include records of your childrsquos diagnosis
treatments response to treatments hospitalization records and medical test results You should also collect statements
from professional adults that interact with your child on a daily basis This can include doctors teachers and therapists
These statements should provide details about your childrsquos limitations and abilities
The SSA may also ask for evidence of the following
Your childrsquos inability to perform age appropriate functions
IQ test results showing a marked developmental deficit based on age
Other developmental delays and impairments in physical and mental functioning again based on age
You should collect these documents prior to beginning the application process to prevent any delays in the processing of
your childrsquos claim
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
19
Starting Your Application
The SSD application procedures will differ depending on whether you are filing for SSI benefits or SSDI dependent
benefits
If you are interested in learning more about dependent benefits you should call the SSArsquos main phone line (1-800-
772-1213) or contact the representative who handles the eligible parentrsquos claim
To apply for SSI benefits on behalf of a child you will be asked to complete two forms the ldquoApplication for
Supplemental Security Incomerdquo and the ldquoChild Disability Reportrdquo Currently only the child disability report can be
completed online You will have to schedule an appointment with your local Social Security office to complete the
application for SSI
If you are applying for SSI on behalf of an adult you will have to complete the same process with an ldquoAdult
Disability Reportrdquo rather than a child disability report
It is important that you realize how overwhelming and complicated the SSD application process may become In
fact many initial applications are denied and require the applicant to request an appeal hearing If your childrsquos
application is denied do not give up The key to receiving disability benefits it to be persistent in your efforts
For more information about applying for disability benefits visit Social Security Disability Help (wwwdisability-
benefits-helporg) or contact Molly Clarke at macssd-helporg
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
20
READ MORE ABOUT OUR ACTIVITIES AND BROWSE THE
INFORMATION PAGES HERE
httpangelmannetworkwordpresscom
Our successful International Angelman Day celebrations
held across the country
httpangelmannetworkwordpresscomlearn-
aboutwhat-is-the-angelman-network
For up to date info on Therapies
httpangelmannetworkwordpresscomtherapy-for-as
For information and ideas regarding Communication
httpangelmannetworkwordpresscomeducation-and-
communication
For general information on Epilepsy in AS
httpangelmannetworkwordpresscomangelman-
syndromeangelman-syndrome-epilepsy
The Angelman Network was
established in New Zealand as a
Charitable Trust in 2011 (CC46746)
We seek to connect and support
people impacted by Angelman
Syndrome
++++++++++++++
We are New Zealandrsquos only organisation
solely dedicated to promoting
awareness for Angelman Syndrome
and to actively promote and support
the progress being made with world-
wide research on AS
++++++++++++++
Our Information Pages are
regularly updated to include
newimproved ideas and links as
these become available
+++++++++++++++
Our aim is to offer an active and
accurate website which will become
a helpful resource for families and
provide useful and reliable information
for medical and educational
professionals both in
NZ and around the world
WE ARE ON FACEBOOK AT
Non-profit page
httpswwwfacebookcomtheangelmann
etwork
Informal group
httpswwwfacebookcomgroups10468
6089609200
Our ACTION ANGEL TEAM is an informal fundraising group who regularly raise funds and awareness for Angelman Syndrome by running in local races wearing their signature white wings
22
Shea teaches himself to read By Carol Pulver of Florida
Angel Mom to Shea 22 years old AS Del +
Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery
followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done
shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful
Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding
and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a
speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him
to sustain a suck for more than a few seconds
At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory
issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the
milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was
just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately
schedule a neurology consultation get an EEG and do blood work to check for abnormalities
Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family
pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with
the neurologist and the blood work we received some answers
I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old
The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He
told us that our son would never be able to walk to talk or to function as our other children and that we might as well
ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I
sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless
We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do
everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but
the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear
I want to share some of the things wersquove learned along this journey
1 Always trust your intuition No one knows your Angel(s) as well as you do
2 Never put a limit on your Angelrsquos abilities
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
23
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
Interested in what research has been published about AS Dr Ed Weeber will tell us how we can search for information and some of the
latest research happening around the globe
How can you get published scientific articles concerning Angelman syndrome research By accessing the free data base
called PubMed (wwwpubmedgov) This valuable resource is developed and maintained by the National Center for
Biotechnology Information (NCBI) at the National Library of Medicine (NLM) and contains more than 20 million references
to scientific articles The search function allows single or multiple terms to narrow the number of ldquohitsrdquo In addition you can
search for authors in order to find all of the publications from a specific researcher Many of these publications are free
and all of them have an abstract to describe the research
A search for the term ldquoAngelman syndromerdquo will reveal 1300 publications with the earliest dating back to 1950 To make
the science a little easier to digest every issue will present a selection of the latest published scientific articles with
Angelman syndrome in the title abstract or key words section of the paper Below are some recent papers that have come
out in the last few months
Title Recurrent fractures as a new skeletal problem in the course of Angelman syndrome
Journal Bone
Authors Rusińska A Dzwonek AB Chlebna-Sokoacuteł D
Department of Pediatric Propedeutics and Metabolic Bone Diseases Medical University of Lodz Poland Maria
Konopnicka Memorial Teaching Hospital No 4 Medical University of Lodz Poland
Abstract
Angelman syndrome is a genetically inherited syndrome with severe retardation of psychomotor development and speech
disturbances usually accompanied by epilepsy typical dysmorphic features and some skeletal symptoms The aim of the
current report is to present new skeletal symptoms which may occur in the course of AS based on a case report of an 8-
year-old girl with confirmed 15q1112 microdeletion and recurrent low-trauma bone fractures According to our knowledge it
is the first report of such skeletal symptoms in patient with a diagnosis of AS
Title Role of the ubiquitin ligase E6APUBE3A in controlling levels of the synaptic protein Arc
Journal Proc Natl Acad Sci U S A
Authors Kuumlhnle S Mothes B Matentzoglu K Scheffner M
Department of Biology and Konstanz Research School Chemical Biology University of Konstanz 78457 Konstanz
Germany
Abstract
Inactivation of the ubiquitin ligase E6 associated protein (E6AP) encoded by the UBE3A gene has been associated with
development of the Angelman syndrome Recently it was reported that in mice loss of E6AP expression results in
increased levels of the synaptic protein Arc and a concomitant impaired synaptic function providing an explanation for
some phenotypic features of Angelman syndrome patients Accordingly E6AP has been shown to negatively regulate
activity-regulated cytoskeleton-associated protein (Arc) and it has been suggested that E6AP targets Arc for ubiquitination
and degradation In our study we provide evidence that Arc is not a direct substrate for E6AP and binds only weakly to
E6AP if at all Furthermore we show that down-regulation of E6AP expression stimulates estradiol-induced transcription
of the Arc gene Thus we propose that Arc protein levels are controlled by E6AP at the transcriptional rather than at the
posttranslational level
Title Proteomic profiling in Drosophila reveals potential Dube3a regulation of the actin cytoskeleton and neuronal
homeostasis
Journal PLoS One
Authors Jensen L Farook MF Reiter LT
Department of Neurology University of Tennessee Health Science Center Memphis Tennessee United States of
America 9
Abstract
The molecular defects associated with Angelman syndrome (AS) and 15q duplication autism are directly correlated to
expression levels of the E3 ubiquitin ligase protein UBE3A Here we used Drosophila melanogaster to screen for the targets
of this ubiquitin ligase under conditions of both decreased (as in AS) or increased (as in dup(15)) levels of the fly Dube3a or
human UBE3A proteins Using liquid phase isoelectric focusing of proteins from whole fly head extracts we identified a total of
50 proteins that show changes in protein and in some cases transcriptional levels when Dube3a fluctuates We analyzed
head extracts from cytoplasmic nuclear and membrane fractions for Dube3a regulated proteins Our results indicate that
Dube3a is involved in the regulation of cellular functions related to ATP synthesismetabolism actin cytoskeletal integrity
both catabolism and carbohydrate metabolism as well as nervous system development and function Sixty-two percent of the
proteins were gt50 identical to homologous human proteins and 8 have previously be shown to be ubiquitinated in the fly
nervous system Eight proteins may be regulated by Dube3a at the transcript level through the transcriptional co-activation
function of Dube3a We investigated one autism-associated protein ATPα and found that it can be ubiquitinated in a Dube3a
dependent manner We also found that Dube3a mutants have significantly less filamentous actin than wild type larvae
consistent with the identification of actin targets regulated by Dube3a The identification of UBE3A targets is the first step in
unraveling the molecular etiology of AS and duplication 15q autism
Title Discrimination training reduces high rate social approach behaviors in Angelman syndrome proof of principle
Journal Res Dev Disabil
Authors Heald M Allen D Villa D Oliver C
Cerebra Centre for Neurodevelopmental Disorders School of Psychology University of Birmingham Edgbaston B15 2TT
UK mxo988bhamacuk
Abstract
This proof of principle study was designed to evaluate whether excessively high rates of social approach behaviors in children
with Angelman syndrome (AS) can be modified using a multiple schedule design Four children with AS were exposed to a
multiple schedule arrangement in which social reinforcement and extinction cued using a novel stimulus were alternated
Twenty-five to 35 discrimination training sessions were conducted and levels of approach behaviors were measured before
and after the discrimination training for two children All four participants evidenced discrimination between conditions of
reinforcement and extinction after 16-20 teaching sessions as indicated by lower rates of social approach behaviors in the
presence of the S(Δ) for extinction Reversal effects for the two children for whom this design was implemented were evident
The results demonstrate that after repeated training the use of a novel stimulus can serve as a cue for children with AS to
discriminate adult availability This is a potentially effective component of a broader intervention strategy but highlights the
need for sustained teaching procedures within this population
Title The Angelman syndrome protein Ube3aE6AP is required for Golgi acidification and surface protein sialylation
Journal J Neurosci
Authors Condon KH Ho J Robinson CG Hanus C Ehlers MD
Department of Neurobiology Duke University Medical Center Durham North Carolina 27710 USA
Abstract
Angelman syndrome (AS) is a severe disorder of postnatal brain development caused by neuron-specific loss of the HECT
(homologous to E6AP carboxy terminus) domain E3 ubiquitin ligase Ube3aE6AP The cellular role of Ube3a remains
enigmatic despite recent descriptions of synaptic and behavioral deficits in AS mouse models Although neuron-specific
imprinting is thought to limit the disease to the brain Ube3a is expressed ubiquitously suggesting a broader role in cellular
function In the current study we demonstrate a profound structural disruption and cisternal swelling of the Golgi apparatus
(GA) in the cortex of AS (UBE3A(m-p+)) mice In Ube3a knockdown cell lines and UBE3A(m-p+) cortical neurons the GA is
severely under-acidified leading to osmotic swelling Both in vitro and in vivo the loss of Ube3a and corresponding elevated
pH of the GA is associated with a marked reduction in protein sialylation a process highly dependent on intralumenal Golgi
pH Altered ion homeostasis of the GA may provide a common cellular pathophysiology underlying the diverse plasticity and
neurodevelopmental deficits associated with AS
10
A Grandmother finds a solution for her granddaughter and all of our kids with Angelman Syndrome
By Lois Carroll
When my growing granddaughter who has AS couldnt be fitted with large enough bibs I took out my sewing machine to
solve the problem I showed the resulting smock to friends and my project Sophies Smocks named after my granddaughter
was born so that many kids with AS could have a free smock
I buy new and gently used turtlenecks and trim Supporters donate their time to help and their money for postage and
materials to keep the project ongoing All the smocks are FREE for individuals with AS I have child size SMALL to adult XL
They are available to others for a donation to cover at least the postage to keep the project going
To get a smock all you have to do is ask by emailing smockscoxnet Give me your childs shirt size plus a name and
mailing address including zip Ill send one as soon as I can Theres no catch and no obligation I mail around the world and
free means free You can check it out at my website httploiscarrollbookscomindexSShtm
Thank you
Grandma Lois
Sophies Smocks
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
Clinical Trial of Low Glycemic Index Treatment proves effective for reducing seizures by 80 ndash 90
Dr Thibert and Dr Elizabeth Thiele (both are members of the Scientific Advisory board for the Angelman Syndrome
Foundation) were able to launch a clinical study to determine the efficacy of the Low Glycemic Index Treatment in
reducing seizures in individuals with Angelman Syndrome In July 2012 the results were in and published in
Epilepsia and in the Angelman Syndrome Foundation newsletter
Epilepsia link httponlinelibrarywileycomdoi101111j1528-1167201203537xabstract
PubMed link httpwwwncbinlmnihgovpubmed22779920
You can read my interview with Dr Thibert on my blog wwwMeetTheFamiliesofASblogspotcom
11
NEW DEVELOPMENTS AT THE ANGELMAN SYNDROME FOUNDATION
Angelman Syndrome Foundation Invests $125 Million in AS ResearchDue to your support the Angelman Syndrome Foundation is able to award more than $125 million in grants for AS research this current grant cycle This yearrsquos funded research will contribute to all future AS preclinical and clinical trials helping move AS research closer to developing treatments for individuals with AS while furthering the research communityrsquos understanding of the complexities of AS Thanks to you this yearrsquos funded research will seek to define the optimal window for potential treatment further understanding of varying UBE3A gene mutations and deletions and determine if a current FDA-approved drug is a viable treatment in an AS mouse model
ASF Biennial Conference Your Ultimate AS ResourceThe Angelman Syndrome Foundationrsquos 2013 Biennial Conference Championing Progress will be held July 23-26 at the Walt Disney World Swan amp Dolphin resort in Orlando Florida As a central resource for your familyrsquos unique needs and those of your loved one with AS the Conference addresses all aspects of living with AS and provides the opportunity to network and learn from a variety of experts and keynote speakers attend breakout sessions and participate in collaborative opportunities with other families
iPads For ASTo help individuals with AS overcome some of the challenges associated with communication the Angelman Syndrome Foundation has launched the iPads For AS program which provides Applereg iPadsreg for up to 100 individuals who qualify for the program Requirements for
participation include working with a speech pathologist and conducting quarterly assessments among others
ASF Honors Your InvestmentDue to your support and that of more than 7000 volunteers during the last 21 years the Angelman Syndrome Foundation has been able to
bull Providemorethan250000individuals with information support and connections to resources
bull Raisemorethan$125million to fund research and provide direct support to individuals affected by AS
bull Grantmorethan$58millionto more than 70 research endeavors to support a diverse set of research projects
bull Holdmorethan186individualwalks in 42 cities across the country that have been attended by more than 52000 individuals
The Angelman Syndrome Foundation is honored to serve as a resource to the AS community and welcomes any individual touched by AS to contact the organization
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Thank you for your supportThe 2013 Angelman Syndrome Foundation National Walk boasted record participation with more than 11700 individuals who to date have raised more than $1 million towards the $11 million fundraising goal Fundraising continues through September 30 The Angelman Syndrome Foundation is deeply grateful for the time energy and support that you and the AS community invested to raise these funds that provide direct support to individuals with AS and their families through programs resources and networking opportunities and that fund research that will help lead to a cure for AS
The Power of Cooking
Angelman syndrome ketogenic diets and LGIT
By Sybille Kraft Bellamy
One of the best ways to naturally help our angels is by giving them a
nutritious healthy diet
Our angels are fragile and very sensitive to their environment
Little things minor changes can trigger dramatic consequences
Each child is unique each parent is special
We have to rediscover the power of food
Therapeutic diets like ketogenic diets have been used for years to help
control epilepsy Today the LGIT (Low Glycemic Index Treatment) is
one of the easiest diets to give to our angels It is one of the weapons
we can use to protect them from the multiple risks they face Seizures
are a major and common risk for our angels
The LGIT helps balance and reinforce the energy they need to keep
them happy healthy and at full cognitive capability
The modification of your childrsquos diet can be done one step at a time
Small changes can lead to big improvements
This is a unique opportunity for you MOM and DAD to directly affect
your childrsquos health and quality of life
There is nothing more terrible than to feel helpless when your child is
sick Our Angelrsquos challenges are numerous and it is proven that a
special diet can help avoid many of their complications
The medical community is embracing this form of treatment to remedy
many disorders worldwide The Angelman community is hard at work to
bring awareness of this treatment to our families Resources such as
ldquoAngleman Syndrome Dietrdquo on Facebook and The Charlie Foundation
can provide information and support to help you start taking control of
your childrsquos diet health and wellbeing
LGIT Testimonial - Jay and Joel are my 26 year old identical twin sons who both have Angelman Syndrome
Seizures have always been a huge problem for them at one point they were both having over 250 grandmals a day
and spent almost a year in the hospital trying to get them controlled Doctors at that time only gave them a 1
chance to survive Now at age 26 Joelrsquos seizures are well controlled with meds but Jayrsquos have never been controlled
In March we started the LGIT after talking to his Dr and getting a lot of support and advice from Sybille Since
starting the diet we have seen a huge decrease in the amount and severity of Jayrsquos seizures Before the diet he
would have 10-20 seizures a week and need a rescue med 3x a week and now he may have only 4-5 seizures a
month Prior to starting the LGIT Jayrsquos seizures were very intense grandmals where he would stop breathing and turn
blue each time and he would have several in a row we have not seen him turn blue or stop breathing since the diet I
believe the diet is helping him tremendously and he is much more alert and vocal Their neurologist has begun
weaning Joel off of one of his seizure meds because of the side effects and we have now started Joel on the LGIT
diet also and he too is acting more alert and vocal (and no seizures) - Lisa Truax-Murphy
Recipes can be found on
Facebookcomangelmansyndromediet
13
LGIT Testimonial - Anna had a terrible start She could not drink and because of this she was hospitalized 3 weeks
after her birth They soon discovered she had epilepsy and here in The Netherlands I understood almost all babies with
epilepsy get Phenobarbital Because I was not satisfied with the care Anna received we decided to move to another
hospital So almost 6 months later the new neurologist advised us to stop with Phenobarbital and start with Keppra
And it was a good choice When Anna was 1 year old she finally got diagnosed Angelman Syndrome With Keppra
we succeeded to keep her seizure free for almost 2 years When the seizures came back we started with Rivotril
(Clonazepam) in addition to the Keppra and it helped her for 2 years but then the seizures came back again Her
neurologist advised us to start with a third drug but we didnrsquot want to give her more medicine At the same time I read
the research article about the LGIT and I got enthusiastic about it I had to give it a try Annarsquos neurologist was a bit
suspicious but I insisted so he helped us The first month was terrible Anna got more seizures and was very tired I was
so afraid I was only complicating her life instead of helping her I was so down that I just wanted to stop the diet But
after a long phone call with Sybille Kraft I decided to continue the diet for just a few more weeks And Irsquom so happy we
did this A week later Annarsquos absences were gone She started to walk again became more alert And the best thing
of all was that for the first time in her life she slept for 6 hours without waking This was so amazing
The LGIT made a big change in Annarsquos life She is able to concentrate shersquos more active and sleeps better Its just
amazing At first the diet appears very complicated This is because we are so used to eating a lot of bread sugar and
processed food If you just use fresh vegetables meat eggs and fish you can easily cook something very healthy tasty
and LGIT When travelling we always take our own food with us for Anna and there is always something on the menu in
a restaurant that she can eat
-Violeta Giurgi
Summer Time is a great time to find your local farmerrsquos market and buy fresh fruits amp veggies
14
Angels in Action
Angels in Action is where you will read about the inspiring stories of the success in gained skills and abilities by our loved ones with
Angelman Syndrome Written by the families we join in celebrating the abilities no matter how big or small We believe it is
important to inspire everyone with these real stories of our endearingly termed lsquoAngels in Actionrsquo
Possibilities abound when we have a vision By Karen VanPuyenbroeck of Illinois
Angel Mom to Krista 10 years old AS UPD
When I was asked by our Editor In Chief Lizzie Sordia to write a piece about Kristas abilities for this section I asked myself what
were my burning questions about how to develop abilities in my daughter and for me I just really wanted to figure out how I could
teach her to speak I knew that there had to be a way and I obsessed on this topic for hours days months and yes even years It
took me quite a while to find an angel with functional speech but I found him and once I found him I knew that it was possible for my
angel to speak too I wanted to know how it was possible And the big lesson that I learned from Richies mom Dawn was that they
first believed that he could develop this ability and so did his therapists From that point on I developed my own belief and eliminated
therapists who did not support my vision for my daughter of verbal communication and unfortunately for me this meant that Krista
received no speech therapy for a time and mom became her therapist with the help of a program called NACD Through NACD I
learned that an unskilled parent who was willing to learn how to implement therapy who would spend many hours per week
implementing therapy and who could maintain the vision for their child was preferable to a highly skilled professional therapist who
could only spend an hour per week with my child and who did not share my vision
Today at age 10 Krista speaks over a hundred words and has quite a few phrases her speech has been referred to as functional
by her school and by the last two speech therapists who have evaluated her Kristas favorite and most consistent phrase over the
years has been I love you and if those were the only words that I had ever heard spoken from the lips of my angel all of the energy
that we have put into her healing program would have been worth it and I would do hundreds of times over again
Heres how we did it
1 We cultivated belief I have to credit my husband Steve for this This angel Daddy always knew that his girl was A-ok And to my
kids Nana who said simply if you want her to speak we will teach her to speak Because Nana has adult twin boys with autism as
a result of Urea Cycle Disorder I knew that she knew exactly what she was talking about and so I believed her Kristas older
siblings played an essential role by always speaking to her as if she could speak back
2 I tossed out any lsquoDebbie Downerrsquo therapists or health care providers in her life at times this meant that she did not receive
certain therapies at all but again I had come to understand that it was better that I work with her with all of my love support and
belief than it was for a professional who didnt see things that way
3 I only shared my vision for my daughter with people who believed in her ability well meaning friends and relatives may want to
help you accept your childs limitations I finally came to understand that this was their position and realized that pushing the issue
was only baiting them into an oh you poor dear its sad that you have not come to terms with your childs disability type of lecture
4 Gluten and Casein free diet baby Thanks to a miraculous accident I bought the wrong Autism book at Barnes and Noble called
Unraveling The Mystery of Autism by author Karyn Seroussi This started us on an amazing journey that lead us to the wonderful
discovery that by removing these offending proteins my daughters health would improve drastically and as a result of her improved
health status Krista gained many wonderful skills much too many to mention here but improved speech was definitely a biggie
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
15
5 At 5 orsquoclock sharp every morning Krista liked to crawl out of my bed and venture off to her play room
where shed play with blocks and just adored taking things apart During this play time I would get down
on the floor with her grab a block put it near my mouth and just repeatedly say Mama The toy was
used to bring her attention to my mouth a technique that I learned while researching the Son-Rise
program This developed into me singing Mama over and over again and pretty soon my girl was
saying Mama so Id check in with her daily to make sure that she still had Mama down pat and I then
moved on to Dada and Baba etc Some words came very easily and some did not but I remained
grateful for every word or approximation that this angel girl could produce never giving a second
thought to the ones that were really tough for her Always referring to her speech as developing
6 Through Glenn Domans book What to do About Your Brain Injured Child (Brain injury in this context
referring to any condition affecting your childs cognitive ability) I learned that I should listen out for
different sounds that she would make for example many babies will babble mmm You catch the child
saying mmm and you sit him down and say I have noticed that you can say mmm Now we will take
that mmm sound and it will mean Mama In this scenario every time you hear the child babble
mmm you will quickly reinforce this by saying something like You said Mama I love it when you say
Mama You called me and I came My Krista is very high intensity and responds very well to intense
animated and even loud praise so this method has proven very effective for us
7 Good probiotics to clear up yeast in the gut and to help to heal Kristas gut was essential
8 Krista gained even more speech while participating in the Angelman Syndrome Supplement Trial
9 We used MB12 shots with much success in Krista learning to string together longer sentences
10 Lastly in recent months Lizzie talked me into supplementing with a fish oil that is specifically
formulated to aid in speech development We saw great results I learned quite a bit about therapeutic
dosing of fish oil at Integrative Nutrition where Dr Sears of The Zone Diet was a guest lecturer and huge
advocate for this approach From this I learned that Krista needed about three times the amount of fish
oil than what is recommended for general health in order to be able to see an increase in ability for
speech
My determination for Krista to learn to speak started when she was a mere baby she is now 10 and Im
still learning and remaining open to safe and effective ways of helping her in the area of speech as well
as many other areas of her life that will help her to become an independent young lady
If you are reading this and feeling a bit bummed out that you were not as convinced about the speech
thing as I was or you feel like oh had I only been that determined maybe I would be hearing my sweet
Angels voice Let me say this DO NOT feel that way There was something that seemed out of
reach for your Angel that you were able to help him or her accomplish that I may have not been able to
help my daughter to accomplish We only have so much energy to expend in a day I chose to expend it
on speech Another parent might be more consumed by helping their child to gain the ability to walk
independently maybe you always envisioned your angel riding a bike or reading whatever it is I hope
our story encourages you to cultivate a belief and unwavering faith that will lead to the achievement of
yours and more importantly your Angels dreams
Written by
Karen VanPuyenbroeck
Angelman Today Magazine
Associate Editor
KarenAngelmantodayGmailcom
Karen is a certified Health Coach providing Nutrition Counseling services to the special needs
community with a focus on Angelman syndrome To learn more about her services visit her website at wwwAngelFoodsbyKarencom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
16
17
Social Security Disability Benefits and Angelman Syndrome Angelman Syndrome (AS) is a complex genetic disorder characterized by developmental delays and neurological
problems Children with AS often require around-the-clock care for their entire lives
Parents of children who have AS often dedicate extra time energy and even money to provide a high quality of life for
their child Assistive technology supportive care and specialty medical treatments rack up expenses quickly Parents
may even find it necessary to take time away from work to be with their child The resulting loss of income and lack of
medical insurances can be financially devastating
If your child has been diagnosed with Angelman Syndrome he or she may qualify for financial assistance in the form of
Social Security Disability (SSD) benefits SSD payments can be used to cover your childrsquos expensesmdashincluding anything
from food to supportive services to medical bills
The following article will give you a basic overview of the options available to your family and will provide you with the
information needed to begin the SSD application process
Compassionate Allowances and Angelman Syndrome
Typically the SSD application process can take months or even years to complete Fortunately the SSA recognizes that
individuals with severely disabling conditions may not be able to wait that long to receive disability benefits For this
reason the SSA offers Compassionate Allowances (CAL) processing to individuals with certain disabilities Applicants
who have been diagnosed with conditions covered by the CAL program can receive SSD benefits in as little as 10 days
Angelman Syndrome is one of approximately 200 conditions that qualify for CAL processing You will not need to fill out
additional paperwork or request to receive CAL processing The SSA will evaluate your childrsquos claim and expedite it
accordingly
Social Security Disability Insurance and Supplemental Security Income
The SSA offers disability benefits through two separate programsmdashSSDI and SSI Each of these programs has very
specific technical eligibility requirements
SSDI stands for Social Security Disability Insurance and provides benefits to disabled workers Eligibility for SSDI is
dependent on an applicantrsquos employment history as well as the amount of taxes he or she has paid into the system
Children and young adults donrsquot often qualify for SSDI on their own record because they havenrsquot had the chance to work
and pay into the program
It is important to note that if the childrsquos parent is qualified for SSDI or retirement benefits the child may qualify for
dependent benefits based on a parent or guardianrsquos earnings record If your child is technically an adult but was
diagnosed with Angelman Syndrome before age 22 he or she is considered to be an adult child Adult children may also
qualify for a childrsquos dependent benefits
SSI stands for Supplemental Security Income SSI is a needs-based program that provides financial assistance to elderly
or disabled individuals who earn very little income Eligibility for SSI is based on financial need not employment history
To qualify applicants cannot exceed specific financial limitations set in place by the SSA
In the case of a child a portion of his or her parentrsquos income will be ldquodeemedrdquo This means that the SSA will evaluate the
deemed income to determine whether or not the child meets the SSI financial eligibility requirements Deeming occurs
for children who are under the age of 18 unmarried and still live with a parent or guardian Parentsrsquo earned income
unearned income and financial resources will all be taken into consideration
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
18
Income and resources that will not be deemed includes the following
Welfare payments
Public Income Maintenance (PIM) including Temporary Assistance to Needy Families (TANF) and VA pension for
veterans
Food stamps
Disaster assistance
Foster care payments
Tax refunds on real property (property that includes land andor buildings)
Home grown produce used for personal consumption
The SSA also makes the following allowances for living expensesmdashmeaning that the following will be deducted from the
amount of income deemed to your child
$365 a month for each additional child that you support
$710 a month for a single parent or $1066 for two parents
It is important to note that this amount will not be subtracted for parents or children who already receive public assistance
Once your child turns 18 SSI payments will be based on his or her own earnings record
Medical Requirements
In addition to the previously mentioned technical requirements your child must also meet very specific medical
requirements to qualify for disability benefits The requirements can be found in a publication known as the ldquoblue bookrdquo
The SSArsquos blue book contains listings for potentially disabling conditions as well as the specific medical criteria an
applicant must meet to qualify under each condition
The SSA has separate listings for adults and children The specific medical requirement that your child will have to meet is
dependent on his or her age Your child will have to meet one or more of the following blue book listings to qualify for
disability benefits
Section 1205mdashMental Retardation (Adult)
Section 11205 ndash Mental retardation (Child)
Section 11008 B ndash Catastrophic Congenital Disorder (Child)
You can access these specific listings on the SSArsquos website
Preparing for the Social Security Disability Application Process
Even though your child qualifies for the Compassionate Allowances program you will still have to provide thorough medical
evidence that proves the extent of your childrsquos condition Medical evidence should include records of your childrsquos diagnosis
treatments response to treatments hospitalization records and medical test results You should also collect statements
from professional adults that interact with your child on a daily basis This can include doctors teachers and therapists
These statements should provide details about your childrsquos limitations and abilities
The SSA may also ask for evidence of the following
Your childrsquos inability to perform age appropriate functions
IQ test results showing a marked developmental deficit based on age
Other developmental delays and impairments in physical and mental functioning again based on age
You should collect these documents prior to beginning the application process to prevent any delays in the processing of
your childrsquos claim
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
19
Starting Your Application
The SSD application procedures will differ depending on whether you are filing for SSI benefits or SSDI dependent
benefits
If you are interested in learning more about dependent benefits you should call the SSArsquos main phone line (1-800-
772-1213) or contact the representative who handles the eligible parentrsquos claim
To apply for SSI benefits on behalf of a child you will be asked to complete two forms the ldquoApplication for
Supplemental Security Incomerdquo and the ldquoChild Disability Reportrdquo Currently only the child disability report can be
completed online You will have to schedule an appointment with your local Social Security office to complete the
application for SSI
If you are applying for SSI on behalf of an adult you will have to complete the same process with an ldquoAdult
Disability Reportrdquo rather than a child disability report
It is important that you realize how overwhelming and complicated the SSD application process may become In
fact many initial applications are denied and require the applicant to request an appeal hearing If your childrsquos
application is denied do not give up The key to receiving disability benefits it to be persistent in your efforts
For more information about applying for disability benefits visit Social Security Disability Help (wwwdisability-
benefits-helporg) or contact Molly Clarke at macssd-helporg
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
20
READ MORE ABOUT OUR ACTIVITIES AND BROWSE THE
INFORMATION PAGES HERE
httpangelmannetworkwordpresscom
Our successful International Angelman Day celebrations
held across the country
httpangelmannetworkwordpresscomlearn-
aboutwhat-is-the-angelman-network
For up to date info on Therapies
httpangelmannetworkwordpresscomtherapy-for-as
For information and ideas regarding Communication
httpangelmannetworkwordpresscomeducation-and-
communication
For general information on Epilepsy in AS
httpangelmannetworkwordpresscomangelman-
syndromeangelman-syndrome-epilepsy
The Angelman Network was
established in New Zealand as a
Charitable Trust in 2011 (CC46746)
We seek to connect and support
people impacted by Angelman
Syndrome
++++++++++++++
We are New Zealandrsquos only organisation
solely dedicated to promoting
awareness for Angelman Syndrome
and to actively promote and support
the progress being made with world-
wide research on AS
++++++++++++++
Our Information Pages are
regularly updated to include
newimproved ideas and links as
these become available
+++++++++++++++
Our aim is to offer an active and
accurate website which will become
a helpful resource for families and
provide useful and reliable information
for medical and educational
professionals both in
NZ and around the world
WE ARE ON FACEBOOK AT
Non-profit page
httpswwwfacebookcomtheangelmann
etwork
Informal group
httpswwwfacebookcomgroups10468
6089609200
Our ACTION ANGEL TEAM is an informal fundraising group who regularly raise funds and awareness for Angelman Syndrome by running in local races wearing their signature white wings
22
Shea teaches himself to read By Carol Pulver of Florida
Angel Mom to Shea 22 years old AS Del +
Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery
followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done
shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful
Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding
and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a
speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him
to sustain a suck for more than a few seconds
At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory
issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the
milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was
just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately
schedule a neurology consultation get an EEG and do blood work to check for abnormalities
Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family
pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with
the neurologist and the blood work we received some answers
I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old
The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He
told us that our son would never be able to walk to talk or to function as our other children and that we might as well
ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I
sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless
We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do
everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but
the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear
I want to share some of the things wersquove learned along this journey
1 Always trust your intuition No one knows your Angel(s) as well as you do
2 Never put a limit on your Angelrsquos abilities
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
23
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
Abstract
The molecular defects associated with Angelman syndrome (AS) and 15q duplication autism are directly correlated to
expression levels of the E3 ubiquitin ligase protein UBE3A Here we used Drosophila melanogaster to screen for the targets
of this ubiquitin ligase under conditions of both decreased (as in AS) or increased (as in dup(15)) levels of the fly Dube3a or
human UBE3A proteins Using liquid phase isoelectric focusing of proteins from whole fly head extracts we identified a total of
50 proteins that show changes in protein and in some cases transcriptional levels when Dube3a fluctuates We analyzed
head extracts from cytoplasmic nuclear and membrane fractions for Dube3a regulated proteins Our results indicate that
Dube3a is involved in the regulation of cellular functions related to ATP synthesismetabolism actin cytoskeletal integrity
both catabolism and carbohydrate metabolism as well as nervous system development and function Sixty-two percent of the
proteins were gt50 identical to homologous human proteins and 8 have previously be shown to be ubiquitinated in the fly
nervous system Eight proteins may be regulated by Dube3a at the transcript level through the transcriptional co-activation
function of Dube3a We investigated one autism-associated protein ATPα and found that it can be ubiquitinated in a Dube3a
dependent manner We also found that Dube3a mutants have significantly less filamentous actin than wild type larvae
consistent with the identification of actin targets regulated by Dube3a The identification of UBE3A targets is the first step in
unraveling the molecular etiology of AS and duplication 15q autism
Title Discrimination training reduces high rate social approach behaviors in Angelman syndrome proof of principle
Journal Res Dev Disabil
Authors Heald M Allen D Villa D Oliver C
Cerebra Centre for Neurodevelopmental Disorders School of Psychology University of Birmingham Edgbaston B15 2TT
UK mxo988bhamacuk
Abstract
This proof of principle study was designed to evaluate whether excessively high rates of social approach behaviors in children
with Angelman syndrome (AS) can be modified using a multiple schedule design Four children with AS were exposed to a
multiple schedule arrangement in which social reinforcement and extinction cued using a novel stimulus were alternated
Twenty-five to 35 discrimination training sessions were conducted and levels of approach behaviors were measured before
and after the discrimination training for two children All four participants evidenced discrimination between conditions of
reinforcement and extinction after 16-20 teaching sessions as indicated by lower rates of social approach behaviors in the
presence of the S(Δ) for extinction Reversal effects for the two children for whom this design was implemented were evident
The results demonstrate that after repeated training the use of a novel stimulus can serve as a cue for children with AS to
discriminate adult availability This is a potentially effective component of a broader intervention strategy but highlights the
need for sustained teaching procedures within this population
Title The Angelman syndrome protein Ube3aE6AP is required for Golgi acidification and surface protein sialylation
Journal J Neurosci
Authors Condon KH Ho J Robinson CG Hanus C Ehlers MD
Department of Neurobiology Duke University Medical Center Durham North Carolina 27710 USA
Abstract
Angelman syndrome (AS) is a severe disorder of postnatal brain development caused by neuron-specific loss of the HECT
(homologous to E6AP carboxy terminus) domain E3 ubiquitin ligase Ube3aE6AP The cellular role of Ube3a remains
enigmatic despite recent descriptions of synaptic and behavioral deficits in AS mouse models Although neuron-specific
imprinting is thought to limit the disease to the brain Ube3a is expressed ubiquitously suggesting a broader role in cellular
function In the current study we demonstrate a profound structural disruption and cisternal swelling of the Golgi apparatus
(GA) in the cortex of AS (UBE3A(m-p+)) mice In Ube3a knockdown cell lines and UBE3A(m-p+) cortical neurons the GA is
severely under-acidified leading to osmotic swelling Both in vitro and in vivo the loss of Ube3a and corresponding elevated
pH of the GA is associated with a marked reduction in protein sialylation a process highly dependent on intralumenal Golgi
pH Altered ion homeostasis of the GA may provide a common cellular pathophysiology underlying the diverse plasticity and
neurodevelopmental deficits associated with AS
10
A Grandmother finds a solution for her granddaughter and all of our kids with Angelman Syndrome
By Lois Carroll
When my growing granddaughter who has AS couldnt be fitted with large enough bibs I took out my sewing machine to
solve the problem I showed the resulting smock to friends and my project Sophies Smocks named after my granddaughter
was born so that many kids with AS could have a free smock
I buy new and gently used turtlenecks and trim Supporters donate their time to help and their money for postage and
materials to keep the project ongoing All the smocks are FREE for individuals with AS I have child size SMALL to adult XL
They are available to others for a donation to cover at least the postage to keep the project going
To get a smock all you have to do is ask by emailing smockscoxnet Give me your childs shirt size plus a name and
mailing address including zip Ill send one as soon as I can Theres no catch and no obligation I mail around the world and
free means free You can check it out at my website httploiscarrollbookscomindexSShtm
Thank you
Grandma Lois
Sophies Smocks
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
Clinical Trial of Low Glycemic Index Treatment proves effective for reducing seizures by 80 ndash 90
Dr Thibert and Dr Elizabeth Thiele (both are members of the Scientific Advisory board for the Angelman Syndrome
Foundation) were able to launch a clinical study to determine the efficacy of the Low Glycemic Index Treatment in
reducing seizures in individuals with Angelman Syndrome In July 2012 the results were in and published in
Epilepsia and in the Angelman Syndrome Foundation newsletter
Epilepsia link httponlinelibrarywileycomdoi101111j1528-1167201203537xabstract
PubMed link httpwwwncbinlmnihgovpubmed22779920
You can read my interview with Dr Thibert on my blog wwwMeetTheFamiliesofASblogspotcom
11
NEW DEVELOPMENTS AT THE ANGELMAN SYNDROME FOUNDATION
Angelman Syndrome Foundation Invests $125 Million in AS ResearchDue to your support the Angelman Syndrome Foundation is able to award more than $125 million in grants for AS research this current grant cycle This yearrsquos funded research will contribute to all future AS preclinical and clinical trials helping move AS research closer to developing treatments for individuals with AS while furthering the research communityrsquos understanding of the complexities of AS Thanks to you this yearrsquos funded research will seek to define the optimal window for potential treatment further understanding of varying UBE3A gene mutations and deletions and determine if a current FDA-approved drug is a viable treatment in an AS mouse model
ASF Biennial Conference Your Ultimate AS ResourceThe Angelman Syndrome Foundationrsquos 2013 Biennial Conference Championing Progress will be held July 23-26 at the Walt Disney World Swan amp Dolphin resort in Orlando Florida As a central resource for your familyrsquos unique needs and those of your loved one with AS the Conference addresses all aspects of living with AS and provides the opportunity to network and learn from a variety of experts and keynote speakers attend breakout sessions and participate in collaborative opportunities with other families
iPads For ASTo help individuals with AS overcome some of the challenges associated with communication the Angelman Syndrome Foundation has launched the iPads For AS program which provides Applereg iPadsreg for up to 100 individuals who qualify for the program Requirements for
participation include working with a speech pathologist and conducting quarterly assessments among others
ASF Honors Your InvestmentDue to your support and that of more than 7000 volunteers during the last 21 years the Angelman Syndrome Foundation has been able to
bull Providemorethan250000individuals with information support and connections to resources
bull Raisemorethan$125million to fund research and provide direct support to individuals affected by AS
bull Grantmorethan$58millionto more than 70 research endeavors to support a diverse set of research projects
bull Holdmorethan186individualwalks in 42 cities across the country that have been attended by more than 52000 individuals
The Angelman Syndrome Foundation is honored to serve as a resource to the AS community and welcomes any individual touched by AS to contact the organization
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Thank you for your supportThe 2013 Angelman Syndrome Foundation National Walk boasted record participation with more than 11700 individuals who to date have raised more than $1 million towards the $11 million fundraising goal Fundraising continues through September 30 The Angelman Syndrome Foundation is deeply grateful for the time energy and support that you and the AS community invested to raise these funds that provide direct support to individuals with AS and their families through programs resources and networking opportunities and that fund research that will help lead to a cure for AS
The Power of Cooking
Angelman syndrome ketogenic diets and LGIT
By Sybille Kraft Bellamy
One of the best ways to naturally help our angels is by giving them a
nutritious healthy diet
Our angels are fragile and very sensitive to their environment
Little things minor changes can trigger dramatic consequences
Each child is unique each parent is special
We have to rediscover the power of food
Therapeutic diets like ketogenic diets have been used for years to help
control epilepsy Today the LGIT (Low Glycemic Index Treatment) is
one of the easiest diets to give to our angels It is one of the weapons
we can use to protect them from the multiple risks they face Seizures
are a major and common risk for our angels
The LGIT helps balance and reinforce the energy they need to keep
them happy healthy and at full cognitive capability
The modification of your childrsquos diet can be done one step at a time
Small changes can lead to big improvements
This is a unique opportunity for you MOM and DAD to directly affect
your childrsquos health and quality of life
There is nothing more terrible than to feel helpless when your child is
sick Our Angelrsquos challenges are numerous and it is proven that a
special diet can help avoid many of their complications
The medical community is embracing this form of treatment to remedy
many disorders worldwide The Angelman community is hard at work to
bring awareness of this treatment to our families Resources such as
ldquoAngleman Syndrome Dietrdquo on Facebook and The Charlie Foundation
can provide information and support to help you start taking control of
your childrsquos diet health and wellbeing
LGIT Testimonial - Jay and Joel are my 26 year old identical twin sons who both have Angelman Syndrome
Seizures have always been a huge problem for them at one point they were both having over 250 grandmals a day
and spent almost a year in the hospital trying to get them controlled Doctors at that time only gave them a 1
chance to survive Now at age 26 Joelrsquos seizures are well controlled with meds but Jayrsquos have never been controlled
In March we started the LGIT after talking to his Dr and getting a lot of support and advice from Sybille Since
starting the diet we have seen a huge decrease in the amount and severity of Jayrsquos seizures Before the diet he
would have 10-20 seizures a week and need a rescue med 3x a week and now he may have only 4-5 seizures a
month Prior to starting the LGIT Jayrsquos seizures were very intense grandmals where he would stop breathing and turn
blue each time and he would have several in a row we have not seen him turn blue or stop breathing since the diet I
believe the diet is helping him tremendously and he is much more alert and vocal Their neurologist has begun
weaning Joel off of one of his seizure meds because of the side effects and we have now started Joel on the LGIT
diet also and he too is acting more alert and vocal (and no seizures) - Lisa Truax-Murphy
Recipes can be found on
Facebookcomangelmansyndromediet
13
LGIT Testimonial - Anna had a terrible start She could not drink and because of this she was hospitalized 3 weeks
after her birth They soon discovered she had epilepsy and here in The Netherlands I understood almost all babies with
epilepsy get Phenobarbital Because I was not satisfied with the care Anna received we decided to move to another
hospital So almost 6 months later the new neurologist advised us to stop with Phenobarbital and start with Keppra
And it was a good choice When Anna was 1 year old she finally got diagnosed Angelman Syndrome With Keppra
we succeeded to keep her seizure free for almost 2 years When the seizures came back we started with Rivotril
(Clonazepam) in addition to the Keppra and it helped her for 2 years but then the seizures came back again Her
neurologist advised us to start with a third drug but we didnrsquot want to give her more medicine At the same time I read
the research article about the LGIT and I got enthusiastic about it I had to give it a try Annarsquos neurologist was a bit
suspicious but I insisted so he helped us The first month was terrible Anna got more seizures and was very tired I was
so afraid I was only complicating her life instead of helping her I was so down that I just wanted to stop the diet But
after a long phone call with Sybille Kraft I decided to continue the diet for just a few more weeks And Irsquom so happy we
did this A week later Annarsquos absences were gone She started to walk again became more alert And the best thing
of all was that for the first time in her life she slept for 6 hours without waking This was so amazing
The LGIT made a big change in Annarsquos life She is able to concentrate shersquos more active and sleeps better Its just
amazing At first the diet appears very complicated This is because we are so used to eating a lot of bread sugar and
processed food If you just use fresh vegetables meat eggs and fish you can easily cook something very healthy tasty
and LGIT When travelling we always take our own food with us for Anna and there is always something on the menu in
a restaurant that she can eat
-Violeta Giurgi
Summer Time is a great time to find your local farmerrsquos market and buy fresh fruits amp veggies
14
Angels in Action
Angels in Action is where you will read about the inspiring stories of the success in gained skills and abilities by our loved ones with
Angelman Syndrome Written by the families we join in celebrating the abilities no matter how big or small We believe it is
important to inspire everyone with these real stories of our endearingly termed lsquoAngels in Actionrsquo
Possibilities abound when we have a vision By Karen VanPuyenbroeck of Illinois
Angel Mom to Krista 10 years old AS UPD
When I was asked by our Editor In Chief Lizzie Sordia to write a piece about Kristas abilities for this section I asked myself what
were my burning questions about how to develop abilities in my daughter and for me I just really wanted to figure out how I could
teach her to speak I knew that there had to be a way and I obsessed on this topic for hours days months and yes even years It
took me quite a while to find an angel with functional speech but I found him and once I found him I knew that it was possible for my
angel to speak too I wanted to know how it was possible And the big lesson that I learned from Richies mom Dawn was that they
first believed that he could develop this ability and so did his therapists From that point on I developed my own belief and eliminated
therapists who did not support my vision for my daughter of verbal communication and unfortunately for me this meant that Krista
received no speech therapy for a time and mom became her therapist with the help of a program called NACD Through NACD I
learned that an unskilled parent who was willing to learn how to implement therapy who would spend many hours per week
implementing therapy and who could maintain the vision for their child was preferable to a highly skilled professional therapist who
could only spend an hour per week with my child and who did not share my vision
Today at age 10 Krista speaks over a hundred words and has quite a few phrases her speech has been referred to as functional
by her school and by the last two speech therapists who have evaluated her Kristas favorite and most consistent phrase over the
years has been I love you and if those were the only words that I had ever heard spoken from the lips of my angel all of the energy
that we have put into her healing program would have been worth it and I would do hundreds of times over again
Heres how we did it
1 We cultivated belief I have to credit my husband Steve for this This angel Daddy always knew that his girl was A-ok And to my
kids Nana who said simply if you want her to speak we will teach her to speak Because Nana has adult twin boys with autism as
a result of Urea Cycle Disorder I knew that she knew exactly what she was talking about and so I believed her Kristas older
siblings played an essential role by always speaking to her as if she could speak back
2 I tossed out any lsquoDebbie Downerrsquo therapists or health care providers in her life at times this meant that she did not receive
certain therapies at all but again I had come to understand that it was better that I work with her with all of my love support and
belief than it was for a professional who didnt see things that way
3 I only shared my vision for my daughter with people who believed in her ability well meaning friends and relatives may want to
help you accept your childs limitations I finally came to understand that this was their position and realized that pushing the issue
was only baiting them into an oh you poor dear its sad that you have not come to terms with your childs disability type of lecture
4 Gluten and Casein free diet baby Thanks to a miraculous accident I bought the wrong Autism book at Barnes and Noble called
Unraveling The Mystery of Autism by author Karyn Seroussi This started us on an amazing journey that lead us to the wonderful
discovery that by removing these offending proteins my daughters health would improve drastically and as a result of her improved
health status Krista gained many wonderful skills much too many to mention here but improved speech was definitely a biggie
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
15
5 At 5 orsquoclock sharp every morning Krista liked to crawl out of my bed and venture off to her play room
where shed play with blocks and just adored taking things apart During this play time I would get down
on the floor with her grab a block put it near my mouth and just repeatedly say Mama The toy was
used to bring her attention to my mouth a technique that I learned while researching the Son-Rise
program This developed into me singing Mama over and over again and pretty soon my girl was
saying Mama so Id check in with her daily to make sure that she still had Mama down pat and I then
moved on to Dada and Baba etc Some words came very easily and some did not but I remained
grateful for every word or approximation that this angel girl could produce never giving a second
thought to the ones that were really tough for her Always referring to her speech as developing
6 Through Glenn Domans book What to do About Your Brain Injured Child (Brain injury in this context
referring to any condition affecting your childs cognitive ability) I learned that I should listen out for
different sounds that she would make for example many babies will babble mmm You catch the child
saying mmm and you sit him down and say I have noticed that you can say mmm Now we will take
that mmm sound and it will mean Mama In this scenario every time you hear the child babble
mmm you will quickly reinforce this by saying something like You said Mama I love it when you say
Mama You called me and I came My Krista is very high intensity and responds very well to intense
animated and even loud praise so this method has proven very effective for us
7 Good probiotics to clear up yeast in the gut and to help to heal Kristas gut was essential
8 Krista gained even more speech while participating in the Angelman Syndrome Supplement Trial
9 We used MB12 shots with much success in Krista learning to string together longer sentences
10 Lastly in recent months Lizzie talked me into supplementing with a fish oil that is specifically
formulated to aid in speech development We saw great results I learned quite a bit about therapeutic
dosing of fish oil at Integrative Nutrition where Dr Sears of The Zone Diet was a guest lecturer and huge
advocate for this approach From this I learned that Krista needed about three times the amount of fish
oil than what is recommended for general health in order to be able to see an increase in ability for
speech
My determination for Krista to learn to speak started when she was a mere baby she is now 10 and Im
still learning and remaining open to safe and effective ways of helping her in the area of speech as well
as many other areas of her life that will help her to become an independent young lady
If you are reading this and feeling a bit bummed out that you were not as convinced about the speech
thing as I was or you feel like oh had I only been that determined maybe I would be hearing my sweet
Angels voice Let me say this DO NOT feel that way There was something that seemed out of
reach for your Angel that you were able to help him or her accomplish that I may have not been able to
help my daughter to accomplish We only have so much energy to expend in a day I chose to expend it
on speech Another parent might be more consumed by helping their child to gain the ability to walk
independently maybe you always envisioned your angel riding a bike or reading whatever it is I hope
our story encourages you to cultivate a belief and unwavering faith that will lead to the achievement of
yours and more importantly your Angels dreams
Written by
Karen VanPuyenbroeck
Angelman Today Magazine
Associate Editor
KarenAngelmantodayGmailcom
Karen is a certified Health Coach providing Nutrition Counseling services to the special needs
community with a focus on Angelman syndrome To learn more about her services visit her website at wwwAngelFoodsbyKarencom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
16
17
Social Security Disability Benefits and Angelman Syndrome Angelman Syndrome (AS) is a complex genetic disorder characterized by developmental delays and neurological
problems Children with AS often require around-the-clock care for their entire lives
Parents of children who have AS often dedicate extra time energy and even money to provide a high quality of life for
their child Assistive technology supportive care and specialty medical treatments rack up expenses quickly Parents
may even find it necessary to take time away from work to be with their child The resulting loss of income and lack of
medical insurances can be financially devastating
If your child has been diagnosed with Angelman Syndrome he or she may qualify for financial assistance in the form of
Social Security Disability (SSD) benefits SSD payments can be used to cover your childrsquos expensesmdashincluding anything
from food to supportive services to medical bills
The following article will give you a basic overview of the options available to your family and will provide you with the
information needed to begin the SSD application process
Compassionate Allowances and Angelman Syndrome
Typically the SSD application process can take months or even years to complete Fortunately the SSA recognizes that
individuals with severely disabling conditions may not be able to wait that long to receive disability benefits For this
reason the SSA offers Compassionate Allowances (CAL) processing to individuals with certain disabilities Applicants
who have been diagnosed with conditions covered by the CAL program can receive SSD benefits in as little as 10 days
Angelman Syndrome is one of approximately 200 conditions that qualify for CAL processing You will not need to fill out
additional paperwork or request to receive CAL processing The SSA will evaluate your childrsquos claim and expedite it
accordingly
Social Security Disability Insurance and Supplemental Security Income
The SSA offers disability benefits through two separate programsmdashSSDI and SSI Each of these programs has very
specific technical eligibility requirements
SSDI stands for Social Security Disability Insurance and provides benefits to disabled workers Eligibility for SSDI is
dependent on an applicantrsquos employment history as well as the amount of taxes he or she has paid into the system
Children and young adults donrsquot often qualify for SSDI on their own record because they havenrsquot had the chance to work
and pay into the program
It is important to note that if the childrsquos parent is qualified for SSDI or retirement benefits the child may qualify for
dependent benefits based on a parent or guardianrsquos earnings record If your child is technically an adult but was
diagnosed with Angelman Syndrome before age 22 he or she is considered to be an adult child Adult children may also
qualify for a childrsquos dependent benefits
SSI stands for Supplemental Security Income SSI is a needs-based program that provides financial assistance to elderly
or disabled individuals who earn very little income Eligibility for SSI is based on financial need not employment history
To qualify applicants cannot exceed specific financial limitations set in place by the SSA
In the case of a child a portion of his or her parentrsquos income will be ldquodeemedrdquo This means that the SSA will evaluate the
deemed income to determine whether or not the child meets the SSI financial eligibility requirements Deeming occurs
for children who are under the age of 18 unmarried and still live with a parent or guardian Parentsrsquo earned income
unearned income and financial resources will all be taken into consideration
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
18
Income and resources that will not be deemed includes the following
Welfare payments
Public Income Maintenance (PIM) including Temporary Assistance to Needy Families (TANF) and VA pension for
veterans
Food stamps
Disaster assistance
Foster care payments
Tax refunds on real property (property that includes land andor buildings)
Home grown produce used for personal consumption
The SSA also makes the following allowances for living expensesmdashmeaning that the following will be deducted from the
amount of income deemed to your child
$365 a month for each additional child that you support
$710 a month for a single parent or $1066 for two parents
It is important to note that this amount will not be subtracted for parents or children who already receive public assistance
Once your child turns 18 SSI payments will be based on his or her own earnings record
Medical Requirements
In addition to the previously mentioned technical requirements your child must also meet very specific medical
requirements to qualify for disability benefits The requirements can be found in a publication known as the ldquoblue bookrdquo
The SSArsquos blue book contains listings for potentially disabling conditions as well as the specific medical criteria an
applicant must meet to qualify under each condition
The SSA has separate listings for adults and children The specific medical requirement that your child will have to meet is
dependent on his or her age Your child will have to meet one or more of the following blue book listings to qualify for
disability benefits
Section 1205mdashMental Retardation (Adult)
Section 11205 ndash Mental retardation (Child)
Section 11008 B ndash Catastrophic Congenital Disorder (Child)
You can access these specific listings on the SSArsquos website
Preparing for the Social Security Disability Application Process
Even though your child qualifies for the Compassionate Allowances program you will still have to provide thorough medical
evidence that proves the extent of your childrsquos condition Medical evidence should include records of your childrsquos diagnosis
treatments response to treatments hospitalization records and medical test results You should also collect statements
from professional adults that interact with your child on a daily basis This can include doctors teachers and therapists
These statements should provide details about your childrsquos limitations and abilities
The SSA may also ask for evidence of the following
Your childrsquos inability to perform age appropriate functions
IQ test results showing a marked developmental deficit based on age
Other developmental delays and impairments in physical and mental functioning again based on age
You should collect these documents prior to beginning the application process to prevent any delays in the processing of
your childrsquos claim
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
19
Starting Your Application
The SSD application procedures will differ depending on whether you are filing for SSI benefits or SSDI dependent
benefits
If you are interested in learning more about dependent benefits you should call the SSArsquos main phone line (1-800-
772-1213) or contact the representative who handles the eligible parentrsquos claim
To apply for SSI benefits on behalf of a child you will be asked to complete two forms the ldquoApplication for
Supplemental Security Incomerdquo and the ldquoChild Disability Reportrdquo Currently only the child disability report can be
completed online You will have to schedule an appointment with your local Social Security office to complete the
application for SSI
If you are applying for SSI on behalf of an adult you will have to complete the same process with an ldquoAdult
Disability Reportrdquo rather than a child disability report
It is important that you realize how overwhelming and complicated the SSD application process may become In
fact many initial applications are denied and require the applicant to request an appeal hearing If your childrsquos
application is denied do not give up The key to receiving disability benefits it to be persistent in your efforts
For more information about applying for disability benefits visit Social Security Disability Help (wwwdisability-
benefits-helporg) or contact Molly Clarke at macssd-helporg
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
20
READ MORE ABOUT OUR ACTIVITIES AND BROWSE THE
INFORMATION PAGES HERE
httpangelmannetworkwordpresscom
Our successful International Angelman Day celebrations
held across the country
httpangelmannetworkwordpresscomlearn-
aboutwhat-is-the-angelman-network
For up to date info on Therapies
httpangelmannetworkwordpresscomtherapy-for-as
For information and ideas regarding Communication
httpangelmannetworkwordpresscomeducation-and-
communication
For general information on Epilepsy in AS
httpangelmannetworkwordpresscomangelman-
syndromeangelman-syndrome-epilepsy
The Angelman Network was
established in New Zealand as a
Charitable Trust in 2011 (CC46746)
We seek to connect and support
people impacted by Angelman
Syndrome
++++++++++++++
We are New Zealandrsquos only organisation
solely dedicated to promoting
awareness for Angelman Syndrome
and to actively promote and support
the progress being made with world-
wide research on AS
++++++++++++++
Our Information Pages are
regularly updated to include
newimproved ideas and links as
these become available
+++++++++++++++
Our aim is to offer an active and
accurate website which will become
a helpful resource for families and
provide useful and reliable information
for medical and educational
professionals both in
NZ and around the world
WE ARE ON FACEBOOK AT
Non-profit page
httpswwwfacebookcomtheangelmann
etwork
Informal group
httpswwwfacebookcomgroups10468
6089609200
Our ACTION ANGEL TEAM is an informal fundraising group who regularly raise funds and awareness for Angelman Syndrome by running in local races wearing their signature white wings
22
Shea teaches himself to read By Carol Pulver of Florida
Angel Mom to Shea 22 years old AS Del +
Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery
followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done
shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful
Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding
and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a
speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him
to sustain a suck for more than a few seconds
At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory
issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the
milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was
just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately
schedule a neurology consultation get an EEG and do blood work to check for abnormalities
Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family
pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with
the neurologist and the blood work we received some answers
I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old
The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He
told us that our son would never be able to walk to talk or to function as our other children and that we might as well
ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I
sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless
We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do
everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but
the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear
I want to share some of the things wersquove learned along this journey
1 Always trust your intuition No one knows your Angel(s) as well as you do
2 Never put a limit on your Angelrsquos abilities
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
23
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
A Grandmother finds a solution for her granddaughter and all of our kids with Angelman Syndrome
By Lois Carroll
When my growing granddaughter who has AS couldnt be fitted with large enough bibs I took out my sewing machine to
solve the problem I showed the resulting smock to friends and my project Sophies Smocks named after my granddaughter
was born so that many kids with AS could have a free smock
I buy new and gently used turtlenecks and trim Supporters donate their time to help and their money for postage and
materials to keep the project ongoing All the smocks are FREE for individuals with AS I have child size SMALL to adult XL
They are available to others for a donation to cover at least the postage to keep the project going
To get a smock all you have to do is ask by emailing smockscoxnet Give me your childs shirt size plus a name and
mailing address including zip Ill send one as soon as I can Theres no catch and no obligation I mail around the world and
free means free You can check it out at my website httploiscarrollbookscomindexSShtm
Thank you
Grandma Lois
Sophies Smocks
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
Clinical Trial of Low Glycemic Index Treatment proves effective for reducing seizures by 80 ndash 90
Dr Thibert and Dr Elizabeth Thiele (both are members of the Scientific Advisory board for the Angelman Syndrome
Foundation) were able to launch a clinical study to determine the efficacy of the Low Glycemic Index Treatment in
reducing seizures in individuals with Angelman Syndrome In July 2012 the results were in and published in
Epilepsia and in the Angelman Syndrome Foundation newsletter
Epilepsia link httponlinelibrarywileycomdoi101111j1528-1167201203537xabstract
PubMed link httpwwwncbinlmnihgovpubmed22779920
You can read my interview with Dr Thibert on my blog wwwMeetTheFamiliesofASblogspotcom
11
NEW DEVELOPMENTS AT THE ANGELMAN SYNDROME FOUNDATION
Angelman Syndrome Foundation Invests $125 Million in AS ResearchDue to your support the Angelman Syndrome Foundation is able to award more than $125 million in grants for AS research this current grant cycle This yearrsquos funded research will contribute to all future AS preclinical and clinical trials helping move AS research closer to developing treatments for individuals with AS while furthering the research communityrsquos understanding of the complexities of AS Thanks to you this yearrsquos funded research will seek to define the optimal window for potential treatment further understanding of varying UBE3A gene mutations and deletions and determine if a current FDA-approved drug is a viable treatment in an AS mouse model
ASF Biennial Conference Your Ultimate AS ResourceThe Angelman Syndrome Foundationrsquos 2013 Biennial Conference Championing Progress will be held July 23-26 at the Walt Disney World Swan amp Dolphin resort in Orlando Florida As a central resource for your familyrsquos unique needs and those of your loved one with AS the Conference addresses all aspects of living with AS and provides the opportunity to network and learn from a variety of experts and keynote speakers attend breakout sessions and participate in collaborative opportunities with other families
iPads For ASTo help individuals with AS overcome some of the challenges associated with communication the Angelman Syndrome Foundation has launched the iPads For AS program which provides Applereg iPadsreg for up to 100 individuals who qualify for the program Requirements for
participation include working with a speech pathologist and conducting quarterly assessments among others
ASF Honors Your InvestmentDue to your support and that of more than 7000 volunteers during the last 21 years the Angelman Syndrome Foundation has been able to
bull Providemorethan250000individuals with information support and connections to resources
bull Raisemorethan$125million to fund research and provide direct support to individuals affected by AS
bull Grantmorethan$58millionto more than 70 research endeavors to support a diverse set of research projects
bull Holdmorethan186individualwalks in 42 cities across the country that have been attended by more than 52000 individuals
The Angelman Syndrome Foundation is honored to serve as a resource to the AS community and welcomes any individual touched by AS to contact the organization
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Thank you for your supportThe 2013 Angelman Syndrome Foundation National Walk boasted record participation with more than 11700 individuals who to date have raised more than $1 million towards the $11 million fundraising goal Fundraising continues through September 30 The Angelman Syndrome Foundation is deeply grateful for the time energy and support that you and the AS community invested to raise these funds that provide direct support to individuals with AS and their families through programs resources and networking opportunities and that fund research that will help lead to a cure for AS
The Power of Cooking
Angelman syndrome ketogenic diets and LGIT
By Sybille Kraft Bellamy
One of the best ways to naturally help our angels is by giving them a
nutritious healthy diet
Our angels are fragile and very sensitive to their environment
Little things minor changes can trigger dramatic consequences
Each child is unique each parent is special
We have to rediscover the power of food
Therapeutic diets like ketogenic diets have been used for years to help
control epilepsy Today the LGIT (Low Glycemic Index Treatment) is
one of the easiest diets to give to our angels It is one of the weapons
we can use to protect them from the multiple risks they face Seizures
are a major and common risk for our angels
The LGIT helps balance and reinforce the energy they need to keep
them happy healthy and at full cognitive capability
The modification of your childrsquos diet can be done one step at a time
Small changes can lead to big improvements
This is a unique opportunity for you MOM and DAD to directly affect
your childrsquos health and quality of life
There is nothing more terrible than to feel helpless when your child is
sick Our Angelrsquos challenges are numerous and it is proven that a
special diet can help avoid many of their complications
The medical community is embracing this form of treatment to remedy
many disorders worldwide The Angelman community is hard at work to
bring awareness of this treatment to our families Resources such as
ldquoAngleman Syndrome Dietrdquo on Facebook and The Charlie Foundation
can provide information and support to help you start taking control of
your childrsquos diet health and wellbeing
LGIT Testimonial - Jay and Joel are my 26 year old identical twin sons who both have Angelman Syndrome
Seizures have always been a huge problem for them at one point they were both having over 250 grandmals a day
and spent almost a year in the hospital trying to get them controlled Doctors at that time only gave them a 1
chance to survive Now at age 26 Joelrsquos seizures are well controlled with meds but Jayrsquos have never been controlled
In March we started the LGIT after talking to his Dr and getting a lot of support and advice from Sybille Since
starting the diet we have seen a huge decrease in the amount and severity of Jayrsquos seizures Before the diet he
would have 10-20 seizures a week and need a rescue med 3x a week and now he may have only 4-5 seizures a
month Prior to starting the LGIT Jayrsquos seizures were very intense grandmals where he would stop breathing and turn
blue each time and he would have several in a row we have not seen him turn blue or stop breathing since the diet I
believe the diet is helping him tremendously and he is much more alert and vocal Their neurologist has begun
weaning Joel off of one of his seizure meds because of the side effects and we have now started Joel on the LGIT
diet also and he too is acting more alert and vocal (and no seizures) - Lisa Truax-Murphy
Recipes can be found on
Facebookcomangelmansyndromediet
13
LGIT Testimonial - Anna had a terrible start She could not drink and because of this she was hospitalized 3 weeks
after her birth They soon discovered she had epilepsy and here in The Netherlands I understood almost all babies with
epilepsy get Phenobarbital Because I was not satisfied with the care Anna received we decided to move to another
hospital So almost 6 months later the new neurologist advised us to stop with Phenobarbital and start with Keppra
And it was a good choice When Anna was 1 year old she finally got diagnosed Angelman Syndrome With Keppra
we succeeded to keep her seizure free for almost 2 years When the seizures came back we started with Rivotril
(Clonazepam) in addition to the Keppra and it helped her for 2 years but then the seizures came back again Her
neurologist advised us to start with a third drug but we didnrsquot want to give her more medicine At the same time I read
the research article about the LGIT and I got enthusiastic about it I had to give it a try Annarsquos neurologist was a bit
suspicious but I insisted so he helped us The first month was terrible Anna got more seizures and was very tired I was
so afraid I was only complicating her life instead of helping her I was so down that I just wanted to stop the diet But
after a long phone call with Sybille Kraft I decided to continue the diet for just a few more weeks And Irsquom so happy we
did this A week later Annarsquos absences were gone She started to walk again became more alert And the best thing
of all was that for the first time in her life she slept for 6 hours without waking This was so amazing
The LGIT made a big change in Annarsquos life She is able to concentrate shersquos more active and sleeps better Its just
amazing At first the diet appears very complicated This is because we are so used to eating a lot of bread sugar and
processed food If you just use fresh vegetables meat eggs and fish you can easily cook something very healthy tasty
and LGIT When travelling we always take our own food with us for Anna and there is always something on the menu in
a restaurant that she can eat
-Violeta Giurgi
Summer Time is a great time to find your local farmerrsquos market and buy fresh fruits amp veggies
14
Angels in Action
Angels in Action is where you will read about the inspiring stories of the success in gained skills and abilities by our loved ones with
Angelman Syndrome Written by the families we join in celebrating the abilities no matter how big or small We believe it is
important to inspire everyone with these real stories of our endearingly termed lsquoAngels in Actionrsquo
Possibilities abound when we have a vision By Karen VanPuyenbroeck of Illinois
Angel Mom to Krista 10 years old AS UPD
When I was asked by our Editor In Chief Lizzie Sordia to write a piece about Kristas abilities for this section I asked myself what
were my burning questions about how to develop abilities in my daughter and for me I just really wanted to figure out how I could
teach her to speak I knew that there had to be a way and I obsessed on this topic for hours days months and yes even years It
took me quite a while to find an angel with functional speech but I found him and once I found him I knew that it was possible for my
angel to speak too I wanted to know how it was possible And the big lesson that I learned from Richies mom Dawn was that they
first believed that he could develop this ability and so did his therapists From that point on I developed my own belief and eliminated
therapists who did not support my vision for my daughter of verbal communication and unfortunately for me this meant that Krista
received no speech therapy for a time and mom became her therapist with the help of a program called NACD Through NACD I
learned that an unskilled parent who was willing to learn how to implement therapy who would spend many hours per week
implementing therapy and who could maintain the vision for their child was preferable to a highly skilled professional therapist who
could only spend an hour per week with my child and who did not share my vision
Today at age 10 Krista speaks over a hundred words and has quite a few phrases her speech has been referred to as functional
by her school and by the last two speech therapists who have evaluated her Kristas favorite and most consistent phrase over the
years has been I love you and if those were the only words that I had ever heard spoken from the lips of my angel all of the energy
that we have put into her healing program would have been worth it and I would do hundreds of times over again
Heres how we did it
1 We cultivated belief I have to credit my husband Steve for this This angel Daddy always knew that his girl was A-ok And to my
kids Nana who said simply if you want her to speak we will teach her to speak Because Nana has adult twin boys with autism as
a result of Urea Cycle Disorder I knew that she knew exactly what she was talking about and so I believed her Kristas older
siblings played an essential role by always speaking to her as if she could speak back
2 I tossed out any lsquoDebbie Downerrsquo therapists or health care providers in her life at times this meant that she did not receive
certain therapies at all but again I had come to understand that it was better that I work with her with all of my love support and
belief than it was for a professional who didnt see things that way
3 I only shared my vision for my daughter with people who believed in her ability well meaning friends and relatives may want to
help you accept your childs limitations I finally came to understand that this was their position and realized that pushing the issue
was only baiting them into an oh you poor dear its sad that you have not come to terms with your childs disability type of lecture
4 Gluten and Casein free diet baby Thanks to a miraculous accident I bought the wrong Autism book at Barnes and Noble called
Unraveling The Mystery of Autism by author Karyn Seroussi This started us on an amazing journey that lead us to the wonderful
discovery that by removing these offending proteins my daughters health would improve drastically and as a result of her improved
health status Krista gained many wonderful skills much too many to mention here but improved speech was definitely a biggie
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
15
5 At 5 orsquoclock sharp every morning Krista liked to crawl out of my bed and venture off to her play room
where shed play with blocks and just adored taking things apart During this play time I would get down
on the floor with her grab a block put it near my mouth and just repeatedly say Mama The toy was
used to bring her attention to my mouth a technique that I learned while researching the Son-Rise
program This developed into me singing Mama over and over again and pretty soon my girl was
saying Mama so Id check in with her daily to make sure that she still had Mama down pat and I then
moved on to Dada and Baba etc Some words came very easily and some did not but I remained
grateful for every word or approximation that this angel girl could produce never giving a second
thought to the ones that were really tough for her Always referring to her speech as developing
6 Through Glenn Domans book What to do About Your Brain Injured Child (Brain injury in this context
referring to any condition affecting your childs cognitive ability) I learned that I should listen out for
different sounds that she would make for example many babies will babble mmm You catch the child
saying mmm and you sit him down and say I have noticed that you can say mmm Now we will take
that mmm sound and it will mean Mama In this scenario every time you hear the child babble
mmm you will quickly reinforce this by saying something like You said Mama I love it when you say
Mama You called me and I came My Krista is very high intensity and responds very well to intense
animated and even loud praise so this method has proven very effective for us
7 Good probiotics to clear up yeast in the gut and to help to heal Kristas gut was essential
8 Krista gained even more speech while participating in the Angelman Syndrome Supplement Trial
9 We used MB12 shots with much success in Krista learning to string together longer sentences
10 Lastly in recent months Lizzie talked me into supplementing with a fish oil that is specifically
formulated to aid in speech development We saw great results I learned quite a bit about therapeutic
dosing of fish oil at Integrative Nutrition where Dr Sears of The Zone Diet was a guest lecturer and huge
advocate for this approach From this I learned that Krista needed about three times the amount of fish
oil than what is recommended for general health in order to be able to see an increase in ability for
speech
My determination for Krista to learn to speak started when she was a mere baby she is now 10 and Im
still learning and remaining open to safe and effective ways of helping her in the area of speech as well
as many other areas of her life that will help her to become an independent young lady
If you are reading this and feeling a bit bummed out that you were not as convinced about the speech
thing as I was or you feel like oh had I only been that determined maybe I would be hearing my sweet
Angels voice Let me say this DO NOT feel that way There was something that seemed out of
reach for your Angel that you were able to help him or her accomplish that I may have not been able to
help my daughter to accomplish We only have so much energy to expend in a day I chose to expend it
on speech Another parent might be more consumed by helping their child to gain the ability to walk
independently maybe you always envisioned your angel riding a bike or reading whatever it is I hope
our story encourages you to cultivate a belief and unwavering faith that will lead to the achievement of
yours and more importantly your Angels dreams
Written by
Karen VanPuyenbroeck
Angelman Today Magazine
Associate Editor
KarenAngelmantodayGmailcom
Karen is a certified Health Coach providing Nutrition Counseling services to the special needs
community with a focus on Angelman syndrome To learn more about her services visit her website at wwwAngelFoodsbyKarencom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
16
17
Social Security Disability Benefits and Angelman Syndrome Angelman Syndrome (AS) is a complex genetic disorder characterized by developmental delays and neurological
problems Children with AS often require around-the-clock care for their entire lives
Parents of children who have AS often dedicate extra time energy and even money to provide a high quality of life for
their child Assistive technology supportive care and specialty medical treatments rack up expenses quickly Parents
may even find it necessary to take time away from work to be with their child The resulting loss of income and lack of
medical insurances can be financially devastating
If your child has been diagnosed with Angelman Syndrome he or she may qualify for financial assistance in the form of
Social Security Disability (SSD) benefits SSD payments can be used to cover your childrsquos expensesmdashincluding anything
from food to supportive services to medical bills
The following article will give you a basic overview of the options available to your family and will provide you with the
information needed to begin the SSD application process
Compassionate Allowances and Angelman Syndrome
Typically the SSD application process can take months or even years to complete Fortunately the SSA recognizes that
individuals with severely disabling conditions may not be able to wait that long to receive disability benefits For this
reason the SSA offers Compassionate Allowances (CAL) processing to individuals with certain disabilities Applicants
who have been diagnosed with conditions covered by the CAL program can receive SSD benefits in as little as 10 days
Angelman Syndrome is one of approximately 200 conditions that qualify for CAL processing You will not need to fill out
additional paperwork or request to receive CAL processing The SSA will evaluate your childrsquos claim and expedite it
accordingly
Social Security Disability Insurance and Supplemental Security Income
The SSA offers disability benefits through two separate programsmdashSSDI and SSI Each of these programs has very
specific technical eligibility requirements
SSDI stands for Social Security Disability Insurance and provides benefits to disabled workers Eligibility for SSDI is
dependent on an applicantrsquos employment history as well as the amount of taxes he or she has paid into the system
Children and young adults donrsquot often qualify for SSDI on their own record because they havenrsquot had the chance to work
and pay into the program
It is important to note that if the childrsquos parent is qualified for SSDI or retirement benefits the child may qualify for
dependent benefits based on a parent or guardianrsquos earnings record If your child is technically an adult but was
diagnosed with Angelman Syndrome before age 22 he or she is considered to be an adult child Adult children may also
qualify for a childrsquos dependent benefits
SSI stands for Supplemental Security Income SSI is a needs-based program that provides financial assistance to elderly
or disabled individuals who earn very little income Eligibility for SSI is based on financial need not employment history
To qualify applicants cannot exceed specific financial limitations set in place by the SSA
In the case of a child a portion of his or her parentrsquos income will be ldquodeemedrdquo This means that the SSA will evaluate the
deemed income to determine whether or not the child meets the SSI financial eligibility requirements Deeming occurs
for children who are under the age of 18 unmarried and still live with a parent or guardian Parentsrsquo earned income
unearned income and financial resources will all be taken into consideration
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
18
Income and resources that will not be deemed includes the following
Welfare payments
Public Income Maintenance (PIM) including Temporary Assistance to Needy Families (TANF) and VA pension for
veterans
Food stamps
Disaster assistance
Foster care payments
Tax refunds on real property (property that includes land andor buildings)
Home grown produce used for personal consumption
The SSA also makes the following allowances for living expensesmdashmeaning that the following will be deducted from the
amount of income deemed to your child
$365 a month for each additional child that you support
$710 a month for a single parent or $1066 for two parents
It is important to note that this amount will not be subtracted for parents or children who already receive public assistance
Once your child turns 18 SSI payments will be based on his or her own earnings record
Medical Requirements
In addition to the previously mentioned technical requirements your child must also meet very specific medical
requirements to qualify for disability benefits The requirements can be found in a publication known as the ldquoblue bookrdquo
The SSArsquos blue book contains listings for potentially disabling conditions as well as the specific medical criteria an
applicant must meet to qualify under each condition
The SSA has separate listings for adults and children The specific medical requirement that your child will have to meet is
dependent on his or her age Your child will have to meet one or more of the following blue book listings to qualify for
disability benefits
Section 1205mdashMental Retardation (Adult)
Section 11205 ndash Mental retardation (Child)
Section 11008 B ndash Catastrophic Congenital Disorder (Child)
You can access these specific listings on the SSArsquos website
Preparing for the Social Security Disability Application Process
Even though your child qualifies for the Compassionate Allowances program you will still have to provide thorough medical
evidence that proves the extent of your childrsquos condition Medical evidence should include records of your childrsquos diagnosis
treatments response to treatments hospitalization records and medical test results You should also collect statements
from professional adults that interact with your child on a daily basis This can include doctors teachers and therapists
These statements should provide details about your childrsquos limitations and abilities
The SSA may also ask for evidence of the following
Your childrsquos inability to perform age appropriate functions
IQ test results showing a marked developmental deficit based on age
Other developmental delays and impairments in physical and mental functioning again based on age
You should collect these documents prior to beginning the application process to prevent any delays in the processing of
your childrsquos claim
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
19
Starting Your Application
The SSD application procedures will differ depending on whether you are filing for SSI benefits or SSDI dependent
benefits
If you are interested in learning more about dependent benefits you should call the SSArsquos main phone line (1-800-
772-1213) or contact the representative who handles the eligible parentrsquos claim
To apply for SSI benefits on behalf of a child you will be asked to complete two forms the ldquoApplication for
Supplemental Security Incomerdquo and the ldquoChild Disability Reportrdquo Currently only the child disability report can be
completed online You will have to schedule an appointment with your local Social Security office to complete the
application for SSI
If you are applying for SSI on behalf of an adult you will have to complete the same process with an ldquoAdult
Disability Reportrdquo rather than a child disability report
It is important that you realize how overwhelming and complicated the SSD application process may become In
fact many initial applications are denied and require the applicant to request an appeal hearing If your childrsquos
application is denied do not give up The key to receiving disability benefits it to be persistent in your efforts
For more information about applying for disability benefits visit Social Security Disability Help (wwwdisability-
benefits-helporg) or contact Molly Clarke at macssd-helporg
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
20
READ MORE ABOUT OUR ACTIVITIES AND BROWSE THE
INFORMATION PAGES HERE
httpangelmannetworkwordpresscom
Our successful International Angelman Day celebrations
held across the country
httpangelmannetworkwordpresscomlearn-
aboutwhat-is-the-angelman-network
For up to date info on Therapies
httpangelmannetworkwordpresscomtherapy-for-as
For information and ideas regarding Communication
httpangelmannetworkwordpresscomeducation-and-
communication
For general information on Epilepsy in AS
httpangelmannetworkwordpresscomangelman-
syndromeangelman-syndrome-epilepsy
The Angelman Network was
established in New Zealand as a
Charitable Trust in 2011 (CC46746)
We seek to connect and support
people impacted by Angelman
Syndrome
++++++++++++++
We are New Zealandrsquos only organisation
solely dedicated to promoting
awareness for Angelman Syndrome
and to actively promote and support
the progress being made with world-
wide research on AS
++++++++++++++
Our Information Pages are
regularly updated to include
newimproved ideas and links as
these become available
+++++++++++++++
Our aim is to offer an active and
accurate website which will become
a helpful resource for families and
provide useful and reliable information
for medical and educational
professionals both in
NZ and around the world
WE ARE ON FACEBOOK AT
Non-profit page
httpswwwfacebookcomtheangelmann
etwork
Informal group
httpswwwfacebookcomgroups10468
6089609200
Our ACTION ANGEL TEAM is an informal fundraising group who regularly raise funds and awareness for Angelman Syndrome by running in local races wearing their signature white wings
22
Shea teaches himself to read By Carol Pulver of Florida
Angel Mom to Shea 22 years old AS Del +
Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery
followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done
shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful
Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding
and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a
speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him
to sustain a suck for more than a few seconds
At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory
issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the
milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was
just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately
schedule a neurology consultation get an EEG and do blood work to check for abnormalities
Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family
pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with
the neurologist and the blood work we received some answers
I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old
The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He
told us that our son would never be able to walk to talk or to function as our other children and that we might as well
ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I
sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless
We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do
everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but
the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear
I want to share some of the things wersquove learned along this journey
1 Always trust your intuition No one knows your Angel(s) as well as you do
2 Never put a limit on your Angelrsquos abilities
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
23
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
NEW DEVELOPMENTS AT THE ANGELMAN SYNDROME FOUNDATION
Angelman Syndrome Foundation Invests $125 Million in AS ResearchDue to your support the Angelman Syndrome Foundation is able to award more than $125 million in grants for AS research this current grant cycle This yearrsquos funded research will contribute to all future AS preclinical and clinical trials helping move AS research closer to developing treatments for individuals with AS while furthering the research communityrsquos understanding of the complexities of AS Thanks to you this yearrsquos funded research will seek to define the optimal window for potential treatment further understanding of varying UBE3A gene mutations and deletions and determine if a current FDA-approved drug is a viable treatment in an AS mouse model
ASF Biennial Conference Your Ultimate AS ResourceThe Angelman Syndrome Foundationrsquos 2013 Biennial Conference Championing Progress will be held July 23-26 at the Walt Disney World Swan amp Dolphin resort in Orlando Florida As a central resource for your familyrsquos unique needs and those of your loved one with AS the Conference addresses all aspects of living with AS and provides the opportunity to network and learn from a variety of experts and keynote speakers attend breakout sessions and participate in collaborative opportunities with other families
iPads For ASTo help individuals with AS overcome some of the challenges associated with communication the Angelman Syndrome Foundation has launched the iPads For AS program which provides Applereg iPadsreg for up to 100 individuals who qualify for the program Requirements for
participation include working with a speech pathologist and conducting quarterly assessments among others
ASF Honors Your InvestmentDue to your support and that of more than 7000 volunteers during the last 21 years the Angelman Syndrome Foundation has been able to
bull Providemorethan250000individuals with information support and connections to resources
bull Raisemorethan$125million to fund research and provide direct support to individuals affected by AS
bull Grantmorethan$58millionto more than 70 research endeavors to support a diverse set of research projects
bull Holdmorethan186individualwalks in 42 cities across the country that have been attended by more than 52000 individuals
The Angelman Syndrome Foundation is honored to serve as a resource to the AS community and welcomes any individual touched by AS to contact the organization
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Thank you for your supportThe 2013 Angelman Syndrome Foundation National Walk boasted record participation with more than 11700 individuals who to date have raised more than $1 million towards the $11 million fundraising goal Fundraising continues through September 30 The Angelman Syndrome Foundation is deeply grateful for the time energy and support that you and the AS community invested to raise these funds that provide direct support to individuals with AS and their families through programs resources and networking opportunities and that fund research that will help lead to a cure for AS
The Power of Cooking
Angelman syndrome ketogenic diets and LGIT
By Sybille Kraft Bellamy
One of the best ways to naturally help our angels is by giving them a
nutritious healthy diet
Our angels are fragile and very sensitive to their environment
Little things minor changes can trigger dramatic consequences
Each child is unique each parent is special
We have to rediscover the power of food
Therapeutic diets like ketogenic diets have been used for years to help
control epilepsy Today the LGIT (Low Glycemic Index Treatment) is
one of the easiest diets to give to our angels It is one of the weapons
we can use to protect them from the multiple risks they face Seizures
are a major and common risk for our angels
The LGIT helps balance and reinforce the energy they need to keep
them happy healthy and at full cognitive capability
The modification of your childrsquos diet can be done one step at a time
Small changes can lead to big improvements
This is a unique opportunity for you MOM and DAD to directly affect
your childrsquos health and quality of life
There is nothing more terrible than to feel helpless when your child is
sick Our Angelrsquos challenges are numerous and it is proven that a
special diet can help avoid many of their complications
The medical community is embracing this form of treatment to remedy
many disorders worldwide The Angelman community is hard at work to
bring awareness of this treatment to our families Resources such as
ldquoAngleman Syndrome Dietrdquo on Facebook and The Charlie Foundation
can provide information and support to help you start taking control of
your childrsquos diet health and wellbeing
LGIT Testimonial - Jay and Joel are my 26 year old identical twin sons who both have Angelman Syndrome
Seizures have always been a huge problem for them at one point they were both having over 250 grandmals a day
and spent almost a year in the hospital trying to get them controlled Doctors at that time only gave them a 1
chance to survive Now at age 26 Joelrsquos seizures are well controlled with meds but Jayrsquos have never been controlled
In March we started the LGIT after talking to his Dr and getting a lot of support and advice from Sybille Since
starting the diet we have seen a huge decrease in the amount and severity of Jayrsquos seizures Before the diet he
would have 10-20 seizures a week and need a rescue med 3x a week and now he may have only 4-5 seizures a
month Prior to starting the LGIT Jayrsquos seizures were very intense grandmals where he would stop breathing and turn
blue each time and he would have several in a row we have not seen him turn blue or stop breathing since the diet I
believe the diet is helping him tremendously and he is much more alert and vocal Their neurologist has begun
weaning Joel off of one of his seizure meds because of the side effects and we have now started Joel on the LGIT
diet also and he too is acting more alert and vocal (and no seizures) - Lisa Truax-Murphy
Recipes can be found on
Facebookcomangelmansyndromediet
13
LGIT Testimonial - Anna had a terrible start She could not drink and because of this she was hospitalized 3 weeks
after her birth They soon discovered she had epilepsy and here in The Netherlands I understood almost all babies with
epilepsy get Phenobarbital Because I was not satisfied with the care Anna received we decided to move to another
hospital So almost 6 months later the new neurologist advised us to stop with Phenobarbital and start with Keppra
And it was a good choice When Anna was 1 year old she finally got diagnosed Angelman Syndrome With Keppra
we succeeded to keep her seizure free for almost 2 years When the seizures came back we started with Rivotril
(Clonazepam) in addition to the Keppra and it helped her for 2 years but then the seizures came back again Her
neurologist advised us to start with a third drug but we didnrsquot want to give her more medicine At the same time I read
the research article about the LGIT and I got enthusiastic about it I had to give it a try Annarsquos neurologist was a bit
suspicious but I insisted so he helped us The first month was terrible Anna got more seizures and was very tired I was
so afraid I was only complicating her life instead of helping her I was so down that I just wanted to stop the diet But
after a long phone call with Sybille Kraft I decided to continue the diet for just a few more weeks And Irsquom so happy we
did this A week later Annarsquos absences were gone She started to walk again became more alert And the best thing
of all was that for the first time in her life she slept for 6 hours without waking This was so amazing
The LGIT made a big change in Annarsquos life She is able to concentrate shersquos more active and sleeps better Its just
amazing At first the diet appears very complicated This is because we are so used to eating a lot of bread sugar and
processed food If you just use fresh vegetables meat eggs and fish you can easily cook something very healthy tasty
and LGIT When travelling we always take our own food with us for Anna and there is always something on the menu in
a restaurant that she can eat
-Violeta Giurgi
Summer Time is a great time to find your local farmerrsquos market and buy fresh fruits amp veggies
14
Angels in Action
Angels in Action is where you will read about the inspiring stories of the success in gained skills and abilities by our loved ones with
Angelman Syndrome Written by the families we join in celebrating the abilities no matter how big or small We believe it is
important to inspire everyone with these real stories of our endearingly termed lsquoAngels in Actionrsquo
Possibilities abound when we have a vision By Karen VanPuyenbroeck of Illinois
Angel Mom to Krista 10 years old AS UPD
When I was asked by our Editor In Chief Lizzie Sordia to write a piece about Kristas abilities for this section I asked myself what
were my burning questions about how to develop abilities in my daughter and for me I just really wanted to figure out how I could
teach her to speak I knew that there had to be a way and I obsessed on this topic for hours days months and yes even years It
took me quite a while to find an angel with functional speech but I found him and once I found him I knew that it was possible for my
angel to speak too I wanted to know how it was possible And the big lesson that I learned from Richies mom Dawn was that they
first believed that he could develop this ability and so did his therapists From that point on I developed my own belief and eliminated
therapists who did not support my vision for my daughter of verbal communication and unfortunately for me this meant that Krista
received no speech therapy for a time and mom became her therapist with the help of a program called NACD Through NACD I
learned that an unskilled parent who was willing to learn how to implement therapy who would spend many hours per week
implementing therapy and who could maintain the vision for their child was preferable to a highly skilled professional therapist who
could only spend an hour per week with my child and who did not share my vision
Today at age 10 Krista speaks over a hundred words and has quite a few phrases her speech has been referred to as functional
by her school and by the last two speech therapists who have evaluated her Kristas favorite and most consistent phrase over the
years has been I love you and if those were the only words that I had ever heard spoken from the lips of my angel all of the energy
that we have put into her healing program would have been worth it and I would do hundreds of times over again
Heres how we did it
1 We cultivated belief I have to credit my husband Steve for this This angel Daddy always knew that his girl was A-ok And to my
kids Nana who said simply if you want her to speak we will teach her to speak Because Nana has adult twin boys with autism as
a result of Urea Cycle Disorder I knew that she knew exactly what she was talking about and so I believed her Kristas older
siblings played an essential role by always speaking to her as if she could speak back
2 I tossed out any lsquoDebbie Downerrsquo therapists or health care providers in her life at times this meant that she did not receive
certain therapies at all but again I had come to understand that it was better that I work with her with all of my love support and
belief than it was for a professional who didnt see things that way
3 I only shared my vision for my daughter with people who believed in her ability well meaning friends and relatives may want to
help you accept your childs limitations I finally came to understand that this was their position and realized that pushing the issue
was only baiting them into an oh you poor dear its sad that you have not come to terms with your childs disability type of lecture
4 Gluten and Casein free diet baby Thanks to a miraculous accident I bought the wrong Autism book at Barnes and Noble called
Unraveling The Mystery of Autism by author Karyn Seroussi This started us on an amazing journey that lead us to the wonderful
discovery that by removing these offending proteins my daughters health would improve drastically and as a result of her improved
health status Krista gained many wonderful skills much too many to mention here but improved speech was definitely a biggie
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
15
5 At 5 orsquoclock sharp every morning Krista liked to crawl out of my bed and venture off to her play room
where shed play with blocks and just adored taking things apart During this play time I would get down
on the floor with her grab a block put it near my mouth and just repeatedly say Mama The toy was
used to bring her attention to my mouth a technique that I learned while researching the Son-Rise
program This developed into me singing Mama over and over again and pretty soon my girl was
saying Mama so Id check in with her daily to make sure that she still had Mama down pat and I then
moved on to Dada and Baba etc Some words came very easily and some did not but I remained
grateful for every word or approximation that this angel girl could produce never giving a second
thought to the ones that were really tough for her Always referring to her speech as developing
6 Through Glenn Domans book What to do About Your Brain Injured Child (Brain injury in this context
referring to any condition affecting your childs cognitive ability) I learned that I should listen out for
different sounds that she would make for example many babies will babble mmm You catch the child
saying mmm and you sit him down and say I have noticed that you can say mmm Now we will take
that mmm sound and it will mean Mama In this scenario every time you hear the child babble
mmm you will quickly reinforce this by saying something like You said Mama I love it when you say
Mama You called me and I came My Krista is very high intensity and responds very well to intense
animated and even loud praise so this method has proven very effective for us
7 Good probiotics to clear up yeast in the gut and to help to heal Kristas gut was essential
8 Krista gained even more speech while participating in the Angelman Syndrome Supplement Trial
9 We used MB12 shots with much success in Krista learning to string together longer sentences
10 Lastly in recent months Lizzie talked me into supplementing with a fish oil that is specifically
formulated to aid in speech development We saw great results I learned quite a bit about therapeutic
dosing of fish oil at Integrative Nutrition where Dr Sears of The Zone Diet was a guest lecturer and huge
advocate for this approach From this I learned that Krista needed about three times the amount of fish
oil than what is recommended for general health in order to be able to see an increase in ability for
speech
My determination for Krista to learn to speak started when she was a mere baby she is now 10 and Im
still learning and remaining open to safe and effective ways of helping her in the area of speech as well
as many other areas of her life that will help her to become an independent young lady
If you are reading this and feeling a bit bummed out that you were not as convinced about the speech
thing as I was or you feel like oh had I only been that determined maybe I would be hearing my sweet
Angels voice Let me say this DO NOT feel that way There was something that seemed out of
reach for your Angel that you were able to help him or her accomplish that I may have not been able to
help my daughter to accomplish We only have so much energy to expend in a day I chose to expend it
on speech Another parent might be more consumed by helping their child to gain the ability to walk
independently maybe you always envisioned your angel riding a bike or reading whatever it is I hope
our story encourages you to cultivate a belief and unwavering faith that will lead to the achievement of
yours and more importantly your Angels dreams
Written by
Karen VanPuyenbroeck
Angelman Today Magazine
Associate Editor
KarenAngelmantodayGmailcom
Karen is a certified Health Coach providing Nutrition Counseling services to the special needs
community with a focus on Angelman syndrome To learn more about her services visit her website at wwwAngelFoodsbyKarencom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
16
17
Social Security Disability Benefits and Angelman Syndrome Angelman Syndrome (AS) is a complex genetic disorder characterized by developmental delays and neurological
problems Children with AS often require around-the-clock care for their entire lives
Parents of children who have AS often dedicate extra time energy and even money to provide a high quality of life for
their child Assistive technology supportive care and specialty medical treatments rack up expenses quickly Parents
may even find it necessary to take time away from work to be with their child The resulting loss of income and lack of
medical insurances can be financially devastating
If your child has been diagnosed with Angelman Syndrome he or she may qualify for financial assistance in the form of
Social Security Disability (SSD) benefits SSD payments can be used to cover your childrsquos expensesmdashincluding anything
from food to supportive services to medical bills
The following article will give you a basic overview of the options available to your family and will provide you with the
information needed to begin the SSD application process
Compassionate Allowances and Angelman Syndrome
Typically the SSD application process can take months or even years to complete Fortunately the SSA recognizes that
individuals with severely disabling conditions may not be able to wait that long to receive disability benefits For this
reason the SSA offers Compassionate Allowances (CAL) processing to individuals with certain disabilities Applicants
who have been diagnosed with conditions covered by the CAL program can receive SSD benefits in as little as 10 days
Angelman Syndrome is one of approximately 200 conditions that qualify for CAL processing You will not need to fill out
additional paperwork or request to receive CAL processing The SSA will evaluate your childrsquos claim and expedite it
accordingly
Social Security Disability Insurance and Supplemental Security Income
The SSA offers disability benefits through two separate programsmdashSSDI and SSI Each of these programs has very
specific technical eligibility requirements
SSDI stands for Social Security Disability Insurance and provides benefits to disabled workers Eligibility for SSDI is
dependent on an applicantrsquos employment history as well as the amount of taxes he or she has paid into the system
Children and young adults donrsquot often qualify for SSDI on their own record because they havenrsquot had the chance to work
and pay into the program
It is important to note that if the childrsquos parent is qualified for SSDI or retirement benefits the child may qualify for
dependent benefits based on a parent or guardianrsquos earnings record If your child is technically an adult but was
diagnosed with Angelman Syndrome before age 22 he or she is considered to be an adult child Adult children may also
qualify for a childrsquos dependent benefits
SSI stands for Supplemental Security Income SSI is a needs-based program that provides financial assistance to elderly
or disabled individuals who earn very little income Eligibility for SSI is based on financial need not employment history
To qualify applicants cannot exceed specific financial limitations set in place by the SSA
In the case of a child a portion of his or her parentrsquos income will be ldquodeemedrdquo This means that the SSA will evaluate the
deemed income to determine whether or not the child meets the SSI financial eligibility requirements Deeming occurs
for children who are under the age of 18 unmarried and still live with a parent or guardian Parentsrsquo earned income
unearned income and financial resources will all be taken into consideration
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
18
Income and resources that will not be deemed includes the following
Welfare payments
Public Income Maintenance (PIM) including Temporary Assistance to Needy Families (TANF) and VA pension for
veterans
Food stamps
Disaster assistance
Foster care payments
Tax refunds on real property (property that includes land andor buildings)
Home grown produce used for personal consumption
The SSA also makes the following allowances for living expensesmdashmeaning that the following will be deducted from the
amount of income deemed to your child
$365 a month for each additional child that you support
$710 a month for a single parent or $1066 for two parents
It is important to note that this amount will not be subtracted for parents or children who already receive public assistance
Once your child turns 18 SSI payments will be based on his or her own earnings record
Medical Requirements
In addition to the previously mentioned technical requirements your child must also meet very specific medical
requirements to qualify for disability benefits The requirements can be found in a publication known as the ldquoblue bookrdquo
The SSArsquos blue book contains listings for potentially disabling conditions as well as the specific medical criteria an
applicant must meet to qualify under each condition
The SSA has separate listings for adults and children The specific medical requirement that your child will have to meet is
dependent on his or her age Your child will have to meet one or more of the following blue book listings to qualify for
disability benefits
Section 1205mdashMental Retardation (Adult)
Section 11205 ndash Mental retardation (Child)
Section 11008 B ndash Catastrophic Congenital Disorder (Child)
You can access these specific listings on the SSArsquos website
Preparing for the Social Security Disability Application Process
Even though your child qualifies for the Compassionate Allowances program you will still have to provide thorough medical
evidence that proves the extent of your childrsquos condition Medical evidence should include records of your childrsquos diagnosis
treatments response to treatments hospitalization records and medical test results You should also collect statements
from professional adults that interact with your child on a daily basis This can include doctors teachers and therapists
These statements should provide details about your childrsquos limitations and abilities
The SSA may also ask for evidence of the following
Your childrsquos inability to perform age appropriate functions
IQ test results showing a marked developmental deficit based on age
Other developmental delays and impairments in physical and mental functioning again based on age
You should collect these documents prior to beginning the application process to prevent any delays in the processing of
your childrsquos claim
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
19
Starting Your Application
The SSD application procedures will differ depending on whether you are filing for SSI benefits or SSDI dependent
benefits
If you are interested in learning more about dependent benefits you should call the SSArsquos main phone line (1-800-
772-1213) or contact the representative who handles the eligible parentrsquos claim
To apply for SSI benefits on behalf of a child you will be asked to complete two forms the ldquoApplication for
Supplemental Security Incomerdquo and the ldquoChild Disability Reportrdquo Currently only the child disability report can be
completed online You will have to schedule an appointment with your local Social Security office to complete the
application for SSI
If you are applying for SSI on behalf of an adult you will have to complete the same process with an ldquoAdult
Disability Reportrdquo rather than a child disability report
It is important that you realize how overwhelming and complicated the SSD application process may become In
fact many initial applications are denied and require the applicant to request an appeal hearing If your childrsquos
application is denied do not give up The key to receiving disability benefits it to be persistent in your efforts
For more information about applying for disability benefits visit Social Security Disability Help (wwwdisability-
benefits-helporg) or contact Molly Clarke at macssd-helporg
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
20
READ MORE ABOUT OUR ACTIVITIES AND BROWSE THE
INFORMATION PAGES HERE
httpangelmannetworkwordpresscom
Our successful International Angelman Day celebrations
held across the country
httpangelmannetworkwordpresscomlearn-
aboutwhat-is-the-angelman-network
For up to date info on Therapies
httpangelmannetworkwordpresscomtherapy-for-as
For information and ideas regarding Communication
httpangelmannetworkwordpresscomeducation-and-
communication
For general information on Epilepsy in AS
httpangelmannetworkwordpresscomangelman-
syndromeangelman-syndrome-epilepsy
The Angelman Network was
established in New Zealand as a
Charitable Trust in 2011 (CC46746)
We seek to connect and support
people impacted by Angelman
Syndrome
++++++++++++++
We are New Zealandrsquos only organisation
solely dedicated to promoting
awareness for Angelman Syndrome
and to actively promote and support
the progress being made with world-
wide research on AS
++++++++++++++
Our Information Pages are
regularly updated to include
newimproved ideas and links as
these become available
+++++++++++++++
Our aim is to offer an active and
accurate website which will become
a helpful resource for families and
provide useful and reliable information
for medical and educational
professionals both in
NZ and around the world
WE ARE ON FACEBOOK AT
Non-profit page
httpswwwfacebookcomtheangelmann
etwork
Informal group
httpswwwfacebookcomgroups10468
6089609200
Our ACTION ANGEL TEAM is an informal fundraising group who regularly raise funds and awareness for Angelman Syndrome by running in local races wearing their signature white wings
22
Shea teaches himself to read By Carol Pulver of Florida
Angel Mom to Shea 22 years old AS Del +
Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery
followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done
shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful
Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding
and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a
speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him
to sustain a suck for more than a few seconds
At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory
issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the
milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was
just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately
schedule a neurology consultation get an EEG and do blood work to check for abnormalities
Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family
pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with
the neurologist and the blood work we received some answers
I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old
The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He
told us that our son would never be able to walk to talk or to function as our other children and that we might as well
ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I
sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless
We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do
everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but
the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear
I want to share some of the things wersquove learned along this journey
1 Always trust your intuition No one knows your Angel(s) as well as you do
2 Never put a limit on your Angelrsquos abilities
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
23
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
The Power of Cooking
Angelman syndrome ketogenic diets and LGIT
By Sybille Kraft Bellamy
One of the best ways to naturally help our angels is by giving them a
nutritious healthy diet
Our angels are fragile and very sensitive to their environment
Little things minor changes can trigger dramatic consequences
Each child is unique each parent is special
We have to rediscover the power of food
Therapeutic diets like ketogenic diets have been used for years to help
control epilepsy Today the LGIT (Low Glycemic Index Treatment) is
one of the easiest diets to give to our angels It is one of the weapons
we can use to protect them from the multiple risks they face Seizures
are a major and common risk for our angels
The LGIT helps balance and reinforce the energy they need to keep
them happy healthy and at full cognitive capability
The modification of your childrsquos diet can be done one step at a time
Small changes can lead to big improvements
This is a unique opportunity for you MOM and DAD to directly affect
your childrsquos health and quality of life
There is nothing more terrible than to feel helpless when your child is
sick Our Angelrsquos challenges are numerous and it is proven that a
special diet can help avoid many of their complications
The medical community is embracing this form of treatment to remedy
many disorders worldwide The Angelman community is hard at work to
bring awareness of this treatment to our families Resources such as
ldquoAngleman Syndrome Dietrdquo on Facebook and The Charlie Foundation
can provide information and support to help you start taking control of
your childrsquos diet health and wellbeing
LGIT Testimonial - Jay and Joel are my 26 year old identical twin sons who both have Angelman Syndrome
Seizures have always been a huge problem for them at one point they were both having over 250 grandmals a day
and spent almost a year in the hospital trying to get them controlled Doctors at that time only gave them a 1
chance to survive Now at age 26 Joelrsquos seizures are well controlled with meds but Jayrsquos have never been controlled
In March we started the LGIT after talking to his Dr and getting a lot of support and advice from Sybille Since
starting the diet we have seen a huge decrease in the amount and severity of Jayrsquos seizures Before the diet he
would have 10-20 seizures a week and need a rescue med 3x a week and now he may have only 4-5 seizures a
month Prior to starting the LGIT Jayrsquos seizures were very intense grandmals where he would stop breathing and turn
blue each time and he would have several in a row we have not seen him turn blue or stop breathing since the diet I
believe the diet is helping him tremendously and he is much more alert and vocal Their neurologist has begun
weaning Joel off of one of his seizure meds because of the side effects and we have now started Joel on the LGIT
diet also and he too is acting more alert and vocal (and no seizures) - Lisa Truax-Murphy
Recipes can be found on
Facebookcomangelmansyndromediet
13
LGIT Testimonial - Anna had a terrible start She could not drink and because of this she was hospitalized 3 weeks
after her birth They soon discovered she had epilepsy and here in The Netherlands I understood almost all babies with
epilepsy get Phenobarbital Because I was not satisfied with the care Anna received we decided to move to another
hospital So almost 6 months later the new neurologist advised us to stop with Phenobarbital and start with Keppra
And it was a good choice When Anna was 1 year old she finally got diagnosed Angelman Syndrome With Keppra
we succeeded to keep her seizure free for almost 2 years When the seizures came back we started with Rivotril
(Clonazepam) in addition to the Keppra and it helped her for 2 years but then the seizures came back again Her
neurologist advised us to start with a third drug but we didnrsquot want to give her more medicine At the same time I read
the research article about the LGIT and I got enthusiastic about it I had to give it a try Annarsquos neurologist was a bit
suspicious but I insisted so he helped us The first month was terrible Anna got more seizures and was very tired I was
so afraid I was only complicating her life instead of helping her I was so down that I just wanted to stop the diet But
after a long phone call with Sybille Kraft I decided to continue the diet for just a few more weeks And Irsquom so happy we
did this A week later Annarsquos absences were gone She started to walk again became more alert And the best thing
of all was that for the first time in her life she slept for 6 hours without waking This was so amazing
The LGIT made a big change in Annarsquos life She is able to concentrate shersquos more active and sleeps better Its just
amazing At first the diet appears very complicated This is because we are so used to eating a lot of bread sugar and
processed food If you just use fresh vegetables meat eggs and fish you can easily cook something very healthy tasty
and LGIT When travelling we always take our own food with us for Anna and there is always something on the menu in
a restaurant that she can eat
-Violeta Giurgi
Summer Time is a great time to find your local farmerrsquos market and buy fresh fruits amp veggies
14
Angels in Action
Angels in Action is where you will read about the inspiring stories of the success in gained skills and abilities by our loved ones with
Angelman Syndrome Written by the families we join in celebrating the abilities no matter how big or small We believe it is
important to inspire everyone with these real stories of our endearingly termed lsquoAngels in Actionrsquo
Possibilities abound when we have a vision By Karen VanPuyenbroeck of Illinois
Angel Mom to Krista 10 years old AS UPD
When I was asked by our Editor In Chief Lizzie Sordia to write a piece about Kristas abilities for this section I asked myself what
were my burning questions about how to develop abilities in my daughter and for me I just really wanted to figure out how I could
teach her to speak I knew that there had to be a way and I obsessed on this topic for hours days months and yes even years It
took me quite a while to find an angel with functional speech but I found him and once I found him I knew that it was possible for my
angel to speak too I wanted to know how it was possible And the big lesson that I learned from Richies mom Dawn was that they
first believed that he could develop this ability and so did his therapists From that point on I developed my own belief and eliminated
therapists who did not support my vision for my daughter of verbal communication and unfortunately for me this meant that Krista
received no speech therapy for a time and mom became her therapist with the help of a program called NACD Through NACD I
learned that an unskilled parent who was willing to learn how to implement therapy who would spend many hours per week
implementing therapy and who could maintain the vision for their child was preferable to a highly skilled professional therapist who
could only spend an hour per week with my child and who did not share my vision
Today at age 10 Krista speaks over a hundred words and has quite a few phrases her speech has been referred to as functional
by her school and by the last two speech therapists who have evaluated her Kristas favorite and most consistent phrase over the
years has been I love you and if those were the only words that I had ever heard spoken from the lips of my angel all of the energy
that we have put into her healing program would have been worth it and I would do hundreds of times over again
Heres how we did it
1 We cultivated belief I have to credit my husband Steve for this This angel Daddy always knew that his girl was A-ok And to my
kids Nana who said simply if you want her to speak we will teach her to speak Because Nana has adult twin boys with autism as
a result of Urea Cycle Disorder I knew that she knew exactly what she was talking about and so I believed her Kristas older
siblings played an essential role by always speaking to her as if she could speak back
2 I tossed out any lsquoDebbie Downerrsquo therapists or health care providers in her life at times this meant that she did not receive
certain therapies at all but again I had come to understand that it was better that I work with her with all of my love support and
belief than it was for a professional who didnt see things that way
3 I only shared my vision for my daughter with people who believed in her ability well meaning friends and relatives may want to
help you accept your childs limitations I finally came to understand that this was their position and realized that pushing the issue
was only baiting them into an oh you poor dear its sad that you have not come to terms with your childs disability type of lecture
4 Gluten and Casein free diet baby Thanks to a miraculous accident I bought the wrong Autism book at Barnes and Noble called
Unraveling The Mystery of Autism by author Karyn Seroussi This started us on an amazing journey that lead us to the wonderful
discovery that by removing these offending proteins my daughters health would improve drastically and as a result of her improved
health status Krista gained many wonderful skills much too many to mention here but improved speech was definitely a biggie
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
15
5 At 5 orsquoclock sharp every morning Krista liked to crawl out of my bed and venture off to her play room
where shed play with blocks and just adored taking things apart During this play time I would get down
on the floor with her grab a block put it near my mouth and just repeatedly say Mama The toy was
used to bring her attention to my mouth a technique that I learned while researching the Son-Rise
program This developed into me singing Mama over and over again and pretty soon my girl was
saying Mama so Id check in with her daily to make sure that she still had Mama down pat and I then
moved on to Dada and Baba etc Some words came very easily and some did not but I remained
grateful for every word or approximation that this angel girl could produce never giving a second
thought to the ones that were really tough for her Always referring to her speech as developing
6 Through Glenn Domans book What to do About Your Brain Injured Child (Brain injury in this context
referring to any condition affecting your childs cognitive ability) I learned that I should listen out for
different sounds that she would make for example many babies will babble mmm You catch the child
saying mmm and you sit him down and say I have noticed that you can say mmm Now we will take
that mmm sound and it will mean Mama In this scenario every time you hear the child babble
mmm you will quickly reinforce this by saying something like You said Mama I love it when you say
Mama You called me and I came My Krista is very high intensity and responds very well to intense
animated and even loud praise so this method has proven very effective for us
7 Good probiotics to clear up yeast in the gut and to help to heal Kristas gut was essential
8 Krista gained even more speech while participating in the Angelman Syndrome Supplement Trial
9 We used MB12 shots with much success in Krista learning to string together longer sentences
10 Lastly in recent months Lizzie talked me into supplementing with a fish oil that is specifically
formulated to aid in speech development We saw great results I learned quite a bit about therapeutic
dosing of fish oil at Integrative Nutrition where Dr Sears of The Zone Diet was a guest lecturer and huge
advocate for this approach From this I learned that Krista needed about three times the amount of fish
oil than what is recommended for general health in order to be able to see an increase in ability for
speech
My determination for Krista to learn to speak started when she was a mere baby she is now 10 and Im
still learning and remaining open to safe and effective ways of helping her in the area of speech as well
as many other areas of her life that will help her to become an independent young lady
If you are reading this and feeling a bit bummed out that you were not as convinced about the speech
thing as I was or you feel like oh had I only been that determined maybe I would be hearing my sweet
Angels voice Let me say this DO NOT feel that way There was something that seemed out of
reach for your Angel that you were able to help him or her accomplish that I may have not been able to
help my daughter to accomplish We only have so much energy to expend in a day I chose to expend it
on speech Another parent might be more consumed by helping their child to gain the ability to walk
independently maybe you always envisioned your angel riding a bike or reading whatever it is I hope
our story encourages you to cultivate a belief and unwavering faith that will lead to the achievement of
yours and more importantly your Angels dreams
Written by
Karen VanPuyenbroeck
Angelman Today Magazine
Associate Editor
KarenAngelmantodayGmailcom
Karen is a certified Health Coach providing Nutrition Counseling services to the special needs
community with a focus on Angelman syndrome To learn more about her services visit her website at wwwAngelFoodsbyKarencom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
16
17
Social Security Disability Benefits and Angelman Syndrome Angelman Syndrome (AS) is a complex genetic disorder characterized by developmental delays and neurological
problems Children with AS often require around-the-clock care for their entire lives
Parents of children who have AS often dedicate extra time energy and even money to provide a high quality of life for
their child Assistive technology supportive care and specialty medical treatments rack up expenses quickly Parents
may even find it necessary to take time away from work to be with their child The resulting loss of income and lack of
medical insurances can be financially devastating
If your child has been diagnosed with Angelman Syndrome he or she may qualify for financial assistance in the form of
Social Security Disability (SSD) benefits SSD payments can be used to cover your childrsquos expensesmdashincluding anything
from food to supportive services to medical bills
The following article will give you a basic overview of the options available to your family and will provide you with the
information needed to begin the SSD application process
Compassionate Allowances and Angelman Syndrome
Typically the SSD application process can take months or even years to complete Fortunately the SSA recognizes that
individuals with severely disabling conditions may not be able to wait that long to receive disability benefits For this
reason the SSA offers Compassionate Allowances (CAL) processing to individuals with certain disabilities Applicants
who have been diagnosed with conditions covered by the CAL program can receive SSD benefits in as little as 10 days
Angelman Syndrome is one of approximately 200 conditions that qualify for CAL processing You will not need to fill out
additional paperwork or request to receive CAL processing The SSA will evaluate your childrsquos claim and expedite it
accordingly
Social Security Disability Insurance and Supplemental Security Income
The SSA offers disability benefits through two separate programsmdashSSDI and SSI Each of these programs has very
specific technical eligibility requirements
SSDI stands for Social Security Disability Insurance and provides benefits to disabled workers Eligibility for SSDI is
dependent on an applicantrsquos employment history as well as the amount of taxes he or she has paid into the system
Children and young adults donrsquot often qualify for SSDI on their own record because they havenrsquot had the chance to work
and pay into the program
It is important to note that if the childrsquos parent is qualified for SSDI or retirement benefits the child may qualify for
dependent benefits based on a parent or guardianrsquos earnings record If your child is technically an adult but was
diagnosed with Angelman Syndrome before age 22 he or she is considered to be an adult child Adult children may also
qualify for a childrsquos dependent benefits
SSI stands for Supplemental Security Income SSI is a needs-based program that provides financial assistance to elderly
or disabled individuals who earn very little income Eligibility for SSI is based on financial need not employment history
To qualify applicants cannot exceed specific financial limitations set in place by the SSA
In the case of a child a portion of his or her parentrsquos income will be ldquodeemedrdquo This means that the SSA will evaluate the
deemed income to determine whether or not the child meets the SSI financial eligibility requirements Deeming occurs
for children who are under the age of 18 unmarried and still live with a parent or guardian Parentsrsquo earned income
unearned income and financial resources will all be taken into consideration
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
18
Income and resources that will not be deemed includes the following
Welfare payments
Public Income Maintenance (PIM) including Temporary Assistance to Needy Families (TANF) and VA pension for
veterans
Food stamps
Disaster assistance
Foster care payments
Tax refunds on real property (property that includes land andor buildings)
Home grown produce used for personal consumption
The SSA also makes the following allowances for living expensesmdashmeaning that the following will be deducted from the
amount of income deemed to your child
$365 a month for each additional child that you support
$710 a month for a single parent or $1066 for two parents
It is important to note that this amount will not be subtracted for parents or children who already receive public assistance
Once your child turns 18 SSI payments will be based on his or her own earnings record
Medical Requirements
In addition to the previously mentioned technical requirements your child must also meet very specific medical
requirements to qualify for disability benefits The requirements can be found in a publication known as the ldquoblue bookrdquo
The SSArsquos blue book contains listings for potentially disabling conditions as well as the specific medical criteria an
applicant must meet to qualify under each condition
The SSA has separate listings for adults and children The specific medical requirement that your child will have to meet is
dependent on his or her age Your child will have to meet one or more of the following blue book listings to qualify for
disability benefits
Section 1205mdashMental Retardation (Adult)
Section 11205 ndash Mental retardation (Child)
Section 11008 B ndash Catastrophic Congenital Disorder (Child)
You can access these specific listings on the SSArsquos website
Preparing for the Social Security Disability Application Process
Even though your child qualifies for the Compassionate Allowances program you will still have to provide thorough medical
evidence that proves the extent of your childrsquos condition Medical evidence should include records of your childrsquos diagnosis
treatments response to treatments hospitalization records and medical test results You should also collect statements
from professional adults that interact with your child on a daily basis This can include doctors teachers and therapists
These statements should provide details about your childrsquos limitations and abilities
The SSA may also ask for evidence of the following
Your childrsquos inability to perform age appropriate functions
IQ test results showing a marked developmental deficit based on age
Other developmental delays and impairments in physical and mental functioning again based on age
You should collect these documents prior to beginning the application process to prevent any delays in the processing of
your childrsquos claim
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
19
Starting Your Application
The SSD application procedures will differ depending on whether you are filing for SSI benefits or SSDI dependent
benefits
If you are interested in learning more about dependent benefits you should call the SSArsquos main phone line (1-800-
772-1213) or contact the representative who handles the eligible parentrsquos claim
To apply for SSI benefits on behalf of a child you will be asked to complete two forms the ldquoApplication for
Supplemental Security Incomerdquo and the ldquoChild Disability Reportrdquo Currently only the child disability report can be
completed online You will have to schedule an appointment with your local Social Security office to complete the
application for SSI
If you are applying for SSI on behalf of an adult you will have to complete the same process with an ldquoAdult
Disability Reportrdquo rather than a child disability report
It is important that you realize how overwhelming and complicated the SSD application process may become In
fact many initial applications are denied and require the applicant to request an appeal hearing If your childrsquos
application is denied do not give up The key to receiving disability benefits it to be persistent in your efforts
For more information about applying for disability benefits visit Social Security Disability Help (wwwdisability-
benefits-helporg) or contact Molly Clarke at macssd-helporg
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
20
READ MORE ABOUT OUR ACTIVITIES AND BROWSE THE
INFORMATION PAGES HERE
httpangelmannetworkwordpresscom
Our successful International Angelman Day celebrations
held across the country
httpangelmannetworkwordpresscomlearn-
aboutwhat-is-the-angelman-network
For up to date info on Therapies
httpangelmannetworkwordpresscomtherapy-for-as
For information and ideas regarding Communication
httpangelmannetworkwordpresscomeducation-and-
communication
For general information on Epilepsy in AS
httpangelmannetworkwordpresscomangelman-
syndromeangelman-syndrome-epilepsy
The Angelman Network was
established in New Zealand as a
Charitable Trust in 2011 (CC46746)
We seek to connect and support
people impacted by Angelman
Syndrome
++++++++++++++
We are New Zealandrsquos only organisation
solely dedicated to promoting
awareness for Angelman Syndrome
and to actively promote and support
the progress being made with world-
wide research on AS
++++++++++++++
Our Information Pages are
regularly updated to include
newimproved ideas and links as
these become available
+++++++++++++++
Our aim is to offer an active and
accurate website which will become
a helpful resource for families and
provide useful and reliable information
for medical and educational
professionals both in
NZ and around the world
WE ARE ON FACEBOOK AT
Non-profit page
httpswwwfacebookcomtheangelmann
etwork
Informal group
httpswwwfacebookcomgroups10468
6089609200
Our ACTION ANGEL TEAM is an informal fundraising group who regularly raise funds and awareness for Angelman Syndrome by running in local races wearing their signature white wings
22
Shea teaches himself to read By Carol Pulver of Florida
Angel Mom to Shea 22 years old AS Del +
Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery
followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done
shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful
Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding
and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a
speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him
to sustain a suck for more than a few seconds
At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory
issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the
milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was
just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately
schedule a neurology consultation get an EEG and do blood work to check for abnormalities
Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family
pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with
the neurologist and the blood work we received some answers
I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old
The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He
told us that our son would never be able to walk to talk or to function as our other children and that we might as well
ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I
sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless
We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do
everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but
the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear
I want to share some of the things wersquove learned along this journey
1 Always trust your intuition No one knows your Angel(s) as well as you do
2 Never put a limit on your Angelrsquos abilities
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
23
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
LGIT Testimonial - Anna had a terrible start She could not drink and because of this she was hospitalized 3 weeks
after her birth They soon discovered she had epilepsy and here in The Netherlands I understood almost all babies with
epilepsy get Phenobarbital Because I was not satisfied with the care Anna received we decided to move to another
hospital So almost 6 months later the new neurologist advised us to stop with Phenobarbital and start with Keppra
And it was a good choice When Anna was 1 year old she finally got diagnosed Angelman Syndrome With Keppra
we succeeded to keep her seizure free for almost 2 years When the seizures came back we started with Rivotril
(Clonazepam) in addition to the Keppra and it helped her for 2 years but then the seizures came back again Her
neurologist advised us to start with a third drug but we didnrsquot want to give her more medicine At the same time I read
the research article about the LGIT and I got enthusiastic about it I had to give it a try Annarsquos neurologist was a bit
suspicious but I insisted so he helped us The first month was terrible Anna got more seizures and was very tired I was
so afraid I was only complicating her life instead of helping her I was so down that I just wanted to stop the diet But
after a long phone call with Sybille Kraft I decided to continue the diet for just a few more weeks And Irsquom so happy we
did this A week later Annarsquos absences were gone She started to walk again became more alert And the best thing
of all was that for the first time in her life she slept for 6 hours without waking This was so amazing
The LGIT made a big change in Annarsquos life She is able to concentrate shersquos more active and sleeps better Its just
amazing At first the diet appears very complicated This is because we are so used to eating a lot of bread sugar and
processed food If you just use fresh vegetables meat eggs and fish you can easily cook something very healthy tasty
and LGIT When travelling we always take our own food with us for Anna and there is always something on the menu in
a restaurant that she can eat
-Violeta Giurgi
Summer Time is a great time to find your local farmerrsquos market and buy fresh fruits amp veggies
14
Angels in Action
Angels in Action is where you will read about the inspiring stories of the success in gained skills and abilities by our loved ones with
Angelman Syndrome Written by the families we join in celebrating the abilities no matter how big or small We believe it is
important to inspire everyone with these real stories of our endearingly termed lsquoAngels in Actionrsquo
Possibilities abound when we have a vision By Karen VanPuyenbroeck of Illinois
Angel Mom to Krista 10 years old AS UPD
When I was asked by our Editor In Chief Lizzie Sordia to write a piece about Kristas abilities for this section I asked myself what
were my burning questions about how to develop abilities in my daughter and for me I just really wanted to figure out how I could
teach her to speak I knew that there had to be a way and I obsessed on this topic for hours days months and yes even years It
took me quite a while to find an angel with functional speech but I found him and once I found him I knew that it was possible for my
angel to speak too I wanted to know how it was possible And the big lesson that I learned from Richies mom Dawn was that they
first believed that he could develop this ability and so did his therapists From that point on I developed my own belief and eliminated
therapists who did not support my vision for my daughter of verbal communication and unfortunately for me this meant that Krista
received no speech therapy for a time and mom became her therapist with the help of a program called NACD Through NACD I
learned that an unskilled parent who was willing to learn how to implement therapy who would spend many hours per week
implementing therapy and who could maintain the vision for their child was preferable to a highly skilled professional therapist who
could only spend an hour per week with my child and who did not share my vision
Today at age 10 Krista speaks over a hundred words and has quite a few phrases her speech has been referred to as functional
by her school and by the last two speech therapists who have evaluated her Kristas favorite and most consistent phrase over the
years has been I love you and if those were the only words that I had ever heard spoken from the lips of my angel all of the energy
that we have put into her healing program would have been worth it and I would do hundreds of times over again
Heres how we did it
1 We cultivated belief I have to credit my husband Steve for this This angel Daddy always knew that his girl was A-ok And to my
kids Nana who said simply if you want her to speak we will teach her to speak Because Nana has adult twin boys with autism as
a result of Urea Cycle Disorder I knew that she knew exactly what she was talking about and so I believed her Kristas older
siblings played an essential role by always speaking to her as if she could speak back
2 I tossed out any lsquoDebbie Downerrsquo therapists or health care providers in her life at times this meant that she did not receive
certain therapies at all but again I had come to understand that it was better that I work with her with all of my love support and
belief than it was for a professional who didnt see things that way
3 I only shared my vision for my daughter with people who believed in her ability well meaning friends and relatives may want to
help you accept your childs limitations I finally came to understand that this was their position and realized that pushing the issue
was only baiting them into an oh you poor dear its sad that you have not come to terms with your childs disability type of lecture
4 Gluten and Casein free diet baby Thanks to a miraculous accident I bought the wrong Autism book at Barnes and Noble called
Unraveling The Mystery of Autism by author Karyn Seroussi This started us on an amazing journey that lead us to the wonderful
discovery that by removing these offending proteins my daughters health would improve drastically and as a result of her improved
health status Krista gained many wonderful skills much too many to mention here but improved speech was definitely a biggie
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
15
5 At 5 orsquoclock sharp every morning Krista liked to crawl out of my bed and venture off to her play room
where shed play with blocks and just adored taking things apart During this play time I would get down
on the floor with her grab a block put it near my mouth and just repeatedly say Mama The toy was
used to bring her attention to my mouth a technique that I learned while researching the Son-Rise
program This developed into me singing Mama over and over again and pretty soon my girl was
saying Mama so Id check in with her daily to make sure that she still had Mama down pat and I then
moved on to Dada and Baba etc Some words came very easily and some did not but I remained
grateful for every word or approximation that this angel girl could produce never giving a second
thought to the ones that were really tough for her Always referring to her speech as developing
6 Through Glenn Domans book What to do About Your Brain Injured Child (Brain injury in this context
referring to any condition affecting your childs cognitive ability) I learned that I should listen out for
different sounds that she would make for example many babies will babble mmm You catch the child
saying mmm and you sit him down and say I have noticed that you can say mmm Now we will take
that mmm sound and it will mean Mama In this scenario every time you hear the child babble
mmm you will quickly reinforce this by saying something like You said Mama I love it when you say
Mama You called me and I came My Krista is very high intensity and responds very well to intense
animated and even loud praise so this method has proven very effective for us
7 Good probiotics to clear up yeast in the gut and to help to heal Kristas gut was essential
8 Krista gained even more speech while participating in the Angelman Syndrome Supplement Trial
9 We used MB12 shots with much success in Krista learning to string together longer sentences
10 Lastly in recent months Lizzie talked me into supplementing with a fish oil that is specifically
formulated to aid in speech development We saw great results I learned quite a bit about therapeutic
dosing of fish oil at Integrative Nutrition where Dr Sears of The Zone Diet was a guest lecturer and huge
advocate for this approach From this I learned that Krista needed about three times the amount of fish
oil than what is recommended for general health in order to be able to see an increase in ability for
speech
My determination for Krista to learn to speak started when she was a mere baby she is now 10 and Im
still learning and remaining open to safe and effective ways of helping her in the area of speech as well
as many other areas of her life that will help her to become an independent young lady
If you are reading this and feeling a bit bummed out that you were not as convinced about the speech
thing as I was or you feel like oh had I only been that determined maybe I would be hearing my sweet
Angels voice Let me say this DO NOT feel that way There was something that seemed out of
reach for your Angel that you were able to help him or her accomplish that I may have not been able to
help my daughter to accomplish We only have so much energy to expend in a day I chose to expend it
on speech Another parent might be more consumed by helping their child to gain the ability to walk
independently maybe you always envisioned your angel riding a bike or reading whatever it is I hope
our story encourages you to cultivate a belief and unwavering faith that will lead to the achievement of
yours and more importantly your Angels dreams
Written by
Karen VanPuyenbroeck
Angelman Today Magazine
Associate Editor
KarenAngelmantodayGmailcom
Karen is a certified Health Coach providing Nutrition Counseling services to the special needs
community with a focus on Angelman syndrome To learn more about her services visit her website at wwwAngelFoodsbyKarencom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
16
17
Social Security Disability Benefits and Angelman Syndrome Angelman Syndrome (AS) is a complex genetic disorder characterized by developmental delays and neurological
problems Children with AS often require around-the-clock care for their entire lives
Parents of children who have AS often dedicate extra time energy and even money to provide a high quality of life for
their child Assistive technology supportive care and specialty medical treatments rack up expenses quickly Parents
may even find it necessary to take time away from work to be with their child The resulting loss of income and lack of
medical insurances can be financially devastating
If your child has been diagnosed with Angelman Syndrome he or she may qualify for financial assistance in the form of
Social Security Disability (SSD) benefits SSD payments can be used to cover your childrsquos expensesmdashincluding anything
from food to supportive services to medical bills
The following article will give you a basic overview of the options available to your family and will provide you with the
information needed to begin the SSD application process
Compassionate Allowances and Angelman Syndrome
Typically the SSD application process can take months or even years to complete Fortunately the SSA recognizes that
individuals with severely disabling conditions may not be able to wait that long to receive disability benefits For this
reason the SSA offers Compassionate Allowances (CAL) processing to individuals with certain disabilities Applicants
who have been diagnosed with conditions covered by the CAL program can receive SSD benefits in as little as 10 days
Angelman Syndrome is one of approximately 200 conditions that qualify for CAL processing You will not need to fill out
additional paperwork or request to receive CAL processing The SSA will evaluate your childrsquos claim and expedite it
accordingly
Social Security Disability Insurance and Supplemental Security Income
The SSA offers disability benefits through two separate programsmdashSSDI and SSI Each of these programs has very
specific technical eligibility requirements
SSDI stands for Social Security Disability Insurance and provides benefits to disabled workers Eligibility for SSDI is
dependent on an applicantrsquos employment history as well as the amount of taxes he or she has paid into the system
Children and young adults donrsquot often qualify for SSDI on their own record because they havenrsquot had the chance to work
and pay into the program
It is important to note that if the childrsquos parent is qualified for SSDI or retirement benefits the child may qualify for
dependent benefits based on a parent or guardianrsquos earnings record If your child is technically an adult but was
diagnosed with Angelman Syndrome before age 22 he or she is considered to be an adult child Adult children may also
qualify for a childrsquos dependent benefits
SSI stands for Supplemental Security Income SSI is a needs-based program that provides financial assistance to elderly
or disabled individuals who earn very little income Eligibility for SSI is based on financial need not employment history
To qualify applicants cannot exceed specific financial limitations set in place by the SSA
In the case of a child a portion of his or her parentrsquos income will be ldquodeemedrdquo This means that the SSA will evaluate the
deemed income to determine whether or not the child meets the SSI financial eligibility requirements Deeming occurs
for children who are under the age of 18 unmarried and still live with a parent or guardian Parentsrsquo earned income
unearned income and financial resources will all be taken into consideration
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
18
Income and resources that will not be deemed includes the following
Welfare payments
Public Income Maintenance (PIM) including Temporary Assistance to Needy Families (TANF) and VA pension for
veterans
Food stamps
Disaster assistance
Foster care payments
Tax refunds on real property (property that includes land andor buildings)
Home grown produce used for personal consumption
The SSA also makes the following allowances for living expensesmdashmeaning that the following will be deducted from the
amount of income deemed to your child
$365 a month for each additional child that you support
$710 a month for a single parent or $1066 for two parents
It is important to note that this amount will not be subtracted for parents or children who already receive public assistance
Once your child turns 18 SSI payments will be based on his or her own earnings record
Medical Requirements
In addition to the previously mentioned technical requirements your child must also meet very specific medical
requirements to qualify for disability benefits The requirements can be found in a publication known as the ldquoblue bookrdquo
The SSArsquos blue book contains listings for potentially disabling conditions as well as the specific medical criteria an
applicant must meet to qualify under each condition
The SSA has separate listings for adults and children The specific medical requirement that your child will have to meet is
dependent on his or her age Your child will have to meet one or more of the following blue book listings to qualify for
disability benefits
Section 1205mdashMental Retardation (Adult)
Section 11205 ndash Mental retardation (Child)
Section 11008 B ndash Catastrophic Congenital Disorder (Child)
You can access these specific listings on the SSArsquos website
Preparing for the Social Security Disability Application Process
Even though your child qualifies for the Compassionate Allowances program you will still have to provide thorough medical
evidence that proves the extent of your childrsquos condition Medical evidence should include records of your childrsquos diagnosis
treatments response to treatments hospitalization records and medical test results You should also collect statements
from professional adults that interact with your child on a daily basis This can include doctors teachers and therapists
These statements should provide details about your childrsquos limitations and abilities
The SSA may also ask for evidence of the following
Your childrsquos inability to perform age appropriate functions
IQ test results showing a marked developmental deficit based on age
Other developmental delays and impairments in physical and mental functioning again based on age
You should collect these documents prior to beginning the application process to prevent any delays in the processing of
your childrsquos claim
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
19
Starting Your Application
The SSD application procedures will differ depending on whether you are filing for SSI benefits or SSDI dependent
benefits
If you are interested in learning more about dependent benefits you should call the SSArsquos main phone line (1-800-
772-1213) or contact the representative who handles the eligible parentrsquos claim
To apply for SSI benefits on behalf of a child you will be asked to complete two forms the ldquoApplication for
Supplemental Security Incomerdquo and the ldquoChild Disability Reportrdquo Currently only the child disability report can be
completed online You will have to schedule an appointment with your local Social Security office to complete the
application for SSI
If you are applying for SSI on behalf of an adult you will have to complete the same process with an ldquoAdult
Disability Reportrdquo rather than a child disability report
It is important that you realize how overwhelming and complicated the SSD application process may become In
fact many initial applications are denied and require the applicant to request an appeal hearing If your childrsquos
application is denied do not give up The key to receiving disability benefits it to be persistent in your efforts
For more information about applying for disability benefits visit Social Security Disability Help (wwwdisability-
benefits-helporg) or contact Molly Clarke at macssd-helporg
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
20
READ MORE ABOUT OUR ACTIVITIES AND BROWSE THE
INFORMATION PAGES HERE
httpangelmannetworkwordpresscom
Our successful International Angelman Day celebrations
held across the country
httpangelmannetworkwordpresscomlearn-
aboutwhat-is-the-angelman-network
For up to date info on Therapies
httpangelmannetworkwordpresscomtherapy-for-as
For information and ideas regarding Communication
httpangelmannetworkwordpresscomeducation-and-
communication
For general information on Epilepsy in AS
httpangelmannetworkwordpresscomangelman-
syndromeangelman-syndrome-epilepsy
The Angelman Network was
established in New Zealand as a
Charitable Trust in 2011 (CC46746)
We seek to connect and support
people impacted by Angelman
Syndrome
++++++++++++++
We are New Zealandrsquos only organisation
solely dedicated to promoting
awareness for Angelman Syndrome
and to actively promote and support
the progress being made with world-
wide research on AS
++++++++++++++
Our Information Pages are
regularly updated to include
newimproved ideas and links as
these become available
+++++++++++++++
Our aim is to offer an active and
accurate website which will become
a helpful resource for families and
provide useful and reliable information
for medical and educational
professionals both in
NZ and around the world
WE ARE ON FACEBOOK AT
Non-profit page
httpswwwfacebookcomtheangelmann
etwork
Informal group
httpswwwfacebookcomgroups10468
6089609200
Our ACTION ANGEL TEAM is an informal fundraising group who regularly raise funds and awareness for Angelman Syndrome by running in local races wearing their signature white wings
22
Shea teaches himself to read By Carol Pulver of Florida
Angel Mom to Shea 22 years old AS Del +
Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery
followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done
shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful
Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding
and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a
speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him
to sustain a suck for more than a few seconds
At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory
issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the
milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was
just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately
schedule a neurology consultation get an EEG and do blood work to check for abnormalities
Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family
pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with
the neurologist and the blood work we received some answers
I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old
The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He
told us that our son would never be able to walk to talk or to function as our other children and that we might as well
ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I
sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless
We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do
everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but
the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear
I want to share some of the things wersquove learned along this journey
1 Always trust your intuition No one knows your Angel(s) as well as you do
2 Never put a limit on your Angelrsquos abilities
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
23
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
Angels in Action
Angels in Action is where you will read about the inspiring stories of the success in gained skills and abilities by our loved ones with
Angelman Syndrome Written by the families we join in celebrating the abilities no matter how big or small We believe it is
important to inspire everyone with these real stories of our endearingly termed lsquoAngels in Actionrsquo
Possibilities abound when we have a vision By Karen VanPuyenbroeck of Illinois
Angel Mom to Krista 10 years old AS UPD
When I was asked by our Editor In Chief Lizzie Sordia to write a piece about Kristas abilities for this section I asked myself what
were my burning questions about how to develop abilities in my daughter and for me I just really wanted to figure out how I could
teach her to speak I knew that there had to be a way and I obsessed on this topic for hours days months and yes even years It
took me quite a while to find an angel with functional speech but I found him and once I found him I knew that it was possible for my
angel to speak too I wanted to know how it was possible And the big lesson that I learned from Richies mom Dawn was that they
first believed that he could develop this ability and so did his therapists From that point on I developed my own belief and eliminated
therapists who did not support my vision for my daughter of verbal communication and unfortunately for me this meant that Krista
received no speech therapy for a time and mom became her therapist with the help of a program called NACD Through NACD I
learned that an unskilled parent who was willing to learn how to implement therapy who would spend many hours per week
implementing therapy and who could maintain the vision for their child was preferable to a highly skilled professional therapist who
could only spend an hour per week with my child and who did not share my vision
Today at age 10 Krista speaks over a hundred words and has quite a few phrases her speech has been referred to as functional
by her school and by the last two speech therapists who have evaluated her Kristas favorite and most consistent phrase over the
years has been I love you and if those were the only words that I had ever heard spoken from the lips of my angel all of the energy
that we have put into her healing program would have been worth it and I would do hundreds of times over again
Heres how we did it
1 We cultivated belief I have to credit my husband Steve for this This angel Daddy always knew that his girl was A-ok And to my
kids Nana who said simply if you want her to speak we will teach her to speak Because Nana has adult twin boys with autism as
a result of Urea Cycle Disorder I knew that she knew exactly what she was talking about and so I believed her Kristas older
siblings played an essential role by always speaking to her as if she could speak back
2 I tossed out any lsquoDebbie Downerrsquo therapists or health care providers in her life at times this meant that she did not receive
certain therapies at all but again I had come to understand that it was better that I work with her with all of my love support and
belief than it was for a professional who didnt see things that way
3 I only shared my vision for my daughter with people who believed in her ability well meaning friends and relatives may want to
help you accept your childs limitations I finally came to understand that this was their position and realized that pushing the issue
was only baiting them into an oh you poor dear its sad that you have not come to terms with your childs disability type of lecture
4 Gluten and Casein free diet baby Thanks to a miraculous accident I bought the wrong Autism book at Barnes and Noble called
Unraveling The Mystery of Autism by author Karyn Seroussi This started us on an amazing journey that lead us to the wonderful
discovery that by removing these offending proteins my daughters health would improve drastically and as a result of her improved
health status Krista gained many wonderful skills much too many to mention here but improved speech was definitely a biggie
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
15
5 At 5 orsquoclock sharp every morning Krista liked to crawl out of my bed and venture off to her play room
where shed play with blocks and just adored taking things apart During this play time I would get down
on the floor with her grab a block put it near my mouth and just repeatedly say Mama The toy was
used to bring her attention to my mouth a technique that I learned while researching the Son-Rise
program This developed into me singing Mama over and over again and pretty soon my girl was
saying Mama so Id check in with her daily to make sure that she still had Mama down pat and I then
moved on to Dada and Baba etc Some words came very easily and some did not but I remained
grateful for every word or approximation that this angel girl could produce never giving a second
thought to the ones that were really tough for her Always referring to her speech as developing
6 Through Glenn Domans book What to do About Your Brain Injured Child (Brain injury in this context
referring to any condition affecting your childs cognitive ability) I learned that I should listen out for
different sounds that she would make for example many babies will babble mmm You catch the child
saying mmm and you sit him down and say I have noticed that you can say mmm Now we will take
that mmm sound and it will mean Mama In this scenario every time you hear the child babble
mmm you will quickly reinforce this by saying something like You said Mama I love it when you say
Mama You called me and I came My Krista is very high intensity and responds very well to intense
animated and even loud praise so this method has proven very effective for us
7 Good probiotics to clear up yeast in the gut and to help to heal Kristas gut was essential
8 Krista gained even more speech while participating in the Angelman Syndrome Supplement Trial
9 We used MB12 shots with much success in Krista learning to string together longer sentences
10 Lastly in recent months Lizzie talked me into supplementing with a fish oil that is specifically
formulated to aid in speech development We saw great results I learned quite a bit about therapeutic
dosing of fish oil at Integrative Nutrition where Dr Sears of The Zone Diet was a guest lecturer and huge
advocate for this approach From this I learned that Krista needed about three times the amount of fish
oil than what is recommended for general health in order to be able to see an increase in ability for
speech
My determination for Krista to learn to speak started when she was a mere baby she is now 10 and Im
still learning and remaining open to safe and effective ways of helping her in the area of speech as well
as many other areas of her life that will help her to become an independent young lady
If you are reading this and feeling a bit bummed out that you were not as convinced about the speech
thing as I was or you feel like oh had I only been that determined maybe I would be hearing my sweet
Angels voice Let me say this DO NOT feel that way There was something that seemed out of
reach for your Angel that you were able to help him or her accomplish that I may have not been able to
help my daughter to accomplish We only have so much energy to expend in a day I chose to expend it
on speech Another parent might be more consumed by helping their child to gain the ability to walk
independently maybe you always envisioned your angel riding a bike or reading whatever it is I hope
our story encourages you to cultivate a belief and unwavering faith that will lead to the achievement of
yours and more importantly your Angels dreams
Written by
Karen VanPuyenbroeck
Angelman Today Magazine
Associate Editor
KarenAngelmantodayGmailcom
Karen is a certified Health Coach providing Nutrition Counseling services to the special needs
community with a focus on Angelman syndrome To learn more about her services visit her website at wwwAngelFoodsbyKarencom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
16
17
Social Security Disability Benefits and Angelman Syndrome Angelman Syndrome (AS) is a complex genetic disorder characterized by developmental delays and neurological
problems Children with AS often require around-the-clock care for their entire lives
Parents of children who have AS often dedicate extra time energy and even money to provide a high quality of life for
their child Assistive technology supportive care and specialty medical treatments rack up expenses quickly Parents
may even find it necessary to take time away from work to be with their child The resulting loss of income and lack of
medical insurances can be financially devastating
If your child has been diagnosed with Angelman Syndrome he or she may qualify for financial assistance in the form of
Social Security Disability (SSD) benefits SSD payments can be used to cover your childrsquos expensesmdashincluding anything
from food to supportive services to medical bills
The following article will give you a basic overview of the options available to your family and will provide you with the
information needed to begin the SSD application process
Compassionate Allowances and Angelman Syndrome
Typically the SSD application process can take months or even years to complete Fortunately the SSA recognizes that
individuals with severely disabling conditions may not be able to wait that long to receive disability benefits For this
reason the SSA offers Compassionate Allowances (CAL) processing to individuals with certain disabilities Applicants
who have been diagnosed with conditions covered by the CAL program can receive SSD benefits in as little as 10 days
Angelman Syndrome is one of approximately 200 conditions that qualify for CAL processing You will not need to fill out
additional paperwork or request to receive CAL processing The SSA will evaluate your childrsquos claim and expedite it
accordingly
Social Security Disability Insurance and Supplemental Security Income
The SSA offers disability benefits through two separate programsmdashSSDI and SSI Each of these programs has very
specific technical eligibility requirements
SSDI stands for Social Security Disability Insurance and provides benefits to disabled workers Eligibility for SSDI is
dependent on an applicantrsquos employment history as well as the amount of taxes he or she has paid into the system
Children and young adults donrsquot often qualify for SSDI on their own record because they havenrsquot had the chance to work
and pay into the program
It is important to note that if the childrsquos parent is qualified for SSDI or retirement benefits the child may qualify for
dependent benefits based on a parent or guardianrsquos earnings record If your child is technically an adult but was
diagnosed with Angelman Syndrome before age 22 he or she is considered to be an adult child Adult children may also
qualify for a childrsquos dependent benefits
SSI stands for Supplemental Security Income SSI is a needs-based program that provides financial assistance to elderly
or disabled individuals who earn very little income Eligibility for SSI is based on financial need not employment history
To qualify applicants cannot exceed specific financial limitations set in place by the SSA
In the case of a child a portion of his or her parentrsquos income will be ldquodeemedrdquo This means that the SSA will evaluate the
deemed income to determine whether or not the child meets the SSI financial eligibility requirements Deeming occurs
for children who are under the age of 18 unmarried and still live with a parent or guardian Parentsrsquo earned income
unearned income and financial resources will all be taken into consideration
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
18
Income and resources that will not be deemed includes the following
Welfare payments
Public Income Maintenance (PIM) including Temporary Assistance to Needy Families (TANF) and VA pension for
veterans
Food stamps
Disaster assistance
Foster care payments
Tax refunds on real property (property that includes land andor buildings)
Home grown produce used for personal consumption
The SSA also makes the following allowances for living expensesmdashmeaning that the following will be deducted from the
amount of income deemed to your child
$365 a month for each additional child that you support
$710 a month for a single parent or $1066 for two parents
It is important to note that this amount will not be subtracted for parents or children who already receive public assistance
Once your child turns 18 SSI payments will be based on his or her own earnings record
Medical Requirements
In addition to the previously mentioned technical requirements your child must also meet very specific medical
requirements to qualify for disability benefits The requirements can be found in a publication known as the ldquoblue bookrdquo
The SSArsquos blue book contains listings for potentially disabling conditions as well as the specific medical criteria an
applicant must meet to qualify under each condition
The SSA has separate listings for adults and children The specific medical requirement that your child will have to meet is
dependent on his or her age Your child will have to meet one or more of the following blue book listings to qualify for
disability benefits
Section 1205mdashMental Retardation (Adult)
Section 11205 ndash Mental retardation (Child)
Section 11008 B ndash Catastrophic Congenital Disorder (Child)
You can access these specific listings on the SSArsquos website
Preparing for the Social Security Disability Application Process
Even though your child qualifies for the Compassionate Allowances program you will still have to provide thorough medical
evidence that proves the extent of your childrsquos condition Medical evidence should include records of your childrsquos diagnosis
treatments response to treatments hospitalization records and medical test results You should also collect statements
from professional adults that interact with your child on a daily basis This can include doctors teachers and therapists
These statements should provide details about your childrsquos limitations and abilities
The SSA may also ask for evidence of the following
Your childrsquos inability to perform age appropriate functions
IQ test results showing a marked developmental deficit based on age
Other developmental delays and impairments in physical and mental functioning again based on age
You should collect these documents prior to beginning the application process to prevent any delays in the processing of
your childrsquos claim
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
19
Starting Your Application
The SSD application procedures will differ depending on whether you are filing for SSI benefits or SSDI dependent
benefits
If you are interested in learning more about dependent benefits you should call the SSArsquos main phone line (1-800-
772-1213) or contact the representative who handles the eligible parentrsquos claim
To apply for SSI benefits on behalf of a child you will be asked to complete two forms the ldquoApplication for
Supplemental Security Incomerdquo and the ldquoChild Disability Reportrdquo Currently only the child disability report can be
completed online You will have to schedule an appointment with your local Social Security office to complete the
application for SSI
If you are applying for SSI on behalf of an adult you will have to complete the same process with an ldquoAdult
Disability Reportrdquo rather than a child disability report
It is important that you realize how overwhelming and complicated the SSD application process may become In
fact many initial applications are denied and require the applicant to request an appeal hearing If your childrsquos
application is denied do not give up The key to receiving disability benefits it to be persistent in your efforts
For more information about applying for disability benefits visit Social Security Disability Help (wwwdisability-
benefits-helporg) or contact Molly Clarke at macssd-helporg
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
20
READ MORE ABOUT OUR ACTIVITIES AND BROWSE THE
INFORMATION PAGES HERE
httpangelmannetworkwordpresscom
Our successful International Angelman Day celebrations
held across the country
httpangelmannetworkwordpresscomlearn-
aboutwhat-is-the-angelman-network
For up to date info on Therapies
httpangelmannetworkwordpresscomtherapy-for-as
For information and ideas regarding Communication
httpangelmannetworkwordpresscomeducation-and-
communication
For general information on Epilepsy in AS
httpangelmannetworkwordpresscomangelman-
syndromeangelman-syndrome-epilepsy
The Angelman Network was
established in New Zealand as a
Charitable Trust in 2011 (CC46746)
We seek to connect and support
people impacted by Angelman
Syndrome
++++++++++++++
We are New Zealandrsquos only organisation
solely dedicated to promoting
awareness for Angelman Syndrome
and to actively promote and support
the progress being made with world-
wide research on AS
++++++++++++++
Our Information Pages are
regularly updated to include
newimproved ideas and links as
these become available
+++++++++++++++
Our aim is to offer an active and
accurate website which will become
a helpful resource for families and
provide useful and reliable information
for medical and educational
professionals both in
NZ and around the world
WE ARE ON FACEBOOK AT
Non-profit page
httpswwwfacebookcomtheangelmann
etwork
Informal group
httpswwwfacebookcomgroups10468
6089609200
Our ACTION ANGEL TEAM is an informal fundraising group who regularly raise funds and awareness for Angelman Syndrome by running in local races wearing their signature white wings
22
Shea teaches himself to read By Carol Pulver of Florida
Angel Mom to Shea 22 years old AS Del +
Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery
followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done
shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful
Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding
and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a
speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him
to sustain a suck for more than a few seconds
At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory
issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the
milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was
just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately
schedule a neurology consultation get an EEG and do blood work to check for abnormalities
Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family
pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with
the neurologist and the blood work we received some answers
I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old
The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He
told us that our son would never be able to walk to talk or to function as our other children and that we might as well
ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I
sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless
We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do
everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but
the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear
I want to share some of the things wersquove learned along this journey
1 Always trust your intuition No one knows your Angel(s) as well as you do
2 Never put a limit on your Angelrsquos abilities
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
23
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
5 At 5 orsquoclock sharp every morning Krista liked to crawl out of my bed and venture off to her play room
where shed play with blocks and just adored taking things apart During this play time I would get down
on the floor with her grab a block put it near my mouth and just repeatedly say Mama The toy was
used to bring her attention to my mouth a technique that I learned while researching the Son-Rise
program This developed into me singing Mama over and over again and pretty soon my girl was
saying Mama so Id check in with her daily to make sure that she still had Mama down pat and I then
moved on to Dada and Baba etc Some words came very easily and some did not but I remained
grateful for every word or approximation that this angel girl could produce never giving a second
thought to the ones that were really tough for her Always referring to her speech as developing
6 Through Glenn Domans book What to do About Your Brain Injured Child (Brain injury in this context
referring to any condition affecting your childs cognitive ability) I learned that I should listen out for
different sounds that she would make for example many babies will babble mmm You catch the child
saying mmm and you sit him down and say I have noticed that you can say mmm Now we will take
that mmm sound and it will mean Mama In this scenario every time you hear the child babble
mmm you will quickly reinforce this by saying something like You said Mama I love it when you say
Mama You called me and I came My Krista is very high intensity and responds very well to intense
animated and even loud praise so this method has proven very effective for us
7 Good probiotics to clear up yeast in the gut and to help to heal Kristas gut was essential
8 Krista gained even more speech while participating in the Angelman Syndrome Supplement Trial
9 We used MB12 shots with much success in Krista learning to string together longer sentences
10 Lastly in recent months Lizzie talked me into supplementing with a fish oil that is specifically
formulated to aid in speech development We saw great results I learned quite a bit about therapeutic
dosing of fish oil at Integrative Nutrition where Dr Sears of The Zone Diet was a guest lecturer and huge
advocate for this approach From this I learned that Krista needed about three times the amount of fish
oil than what is recommended for general health in order to be able to see an increase in ability for
speech
My determination for Krista to learn to speak started when she was a mere baby she is now 10 and Im
still learning and remaining open to safe and effective ways of helping her in the area of speech as well
as many other areas of her life that will help her to become an independent young lady
If you are reading this and feeling a bit bummed out that you were not as convinced about the speech
thing as I was or you feel like oh had I only been that determined maybe I would be hearing my sweet
Angels voice Let me say this DO NOT feel that way There was something that seemed out of
reach for your Angel that you were able to help him or her accomplish that I may have not been able to
help my daughter to accomplish We only have so much energy to expend in a day I chose to expend it
on speech Another parent might be more consumed by helping their child to gain the ability to walk
independently maybe you always envisioned your angel riding a bike or reading whatever it is I hope
our story encourages you to cultivate a belief and unwavering faith that will lead to the achievement of
yours and more importantly your Angels dreams
Written by
Karen VanPuyenbroeck
Angelman Today Magazine
Associate Editor
KarenAngelmantodayGmailcom
Karen is a certified Health Coach providing Nutrition Counseling services to the special needs
community with a focus on Angelman syndrome To learn more about her services visit her website at wwwAngelFoodsbyKarencom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
16
17
Social Security Disability Benefits and Angelman Syndrome Angelman Syndrome (AS) is a complex genetic disorder characterized by developmental delays and neurological
problems Children with AS often require around-the-clock care for their entire lives
Parents of children who have AS often dedicate extra time energy and even money to provide a high quality of life for
their child Assistive technology supportive care and specialty medical treatments rack up expenses quickly Parents
may even find it necessary to take time away from work to be with their child The resulting loss of income and lack of
medical insurances can be financially devastating
If your child has been diagnosed with Angelman Syndrome he or she may qualify for financial assistance in the form of
Social Security Disability (SSD) benefits SSD payments can be used to cover your childrsquos expensesmdashincluding anything
from food to supportive services to medical bills
The following article will give you a basic overview of the options available to your family and will provide you with the
information needed to begin the SSD application process
Compassionate Allowances and Angelman Syndrome
Typically the SSD application process can take months or even years to complete Fortunately the SSA recognizes that
individuals with severely disabling conditions may not be able to wait that long to receive disability benefits For this
reason the SSA offers Compassionate Allowances (CAL) processing to individuals with certain disabilities Applicants
who have been diagnosed with conditions covered by the CAL program can receive SSD benefits in as little as 10 days
Angelman Syndrome is one of approximately 200 conditions that qualify for CAL processing You will not need to fill out
additional paperwork or request to receive CAL processing The SSA will evaluate your childrsquos claim and expedite it
accordingly
Social Security Disability Insurance and Supplemental Security Income
The SSA offers disability benefits through two separate programsmdashSSDI and SSI Each of these programs has very
specific technical eligibility requirements
SSDI stands for Social Security Disability Insurance and provides benefits to disabled workers Eligibility for SSDI is
dependent on an applicantrsquos employment history as well as the amount of taxes he or she has paid into the system
Children and young adults donrsquot often qualify for SSDI on their own record because they havenrsquot had the chance to work
and pay into the program
It is important to note that if the childrsquos parent is qualified for SSDI or retirement benefits the child may qualify for
dependent benefits based on a parent or guardianrsquos earnings record If your child is technically an adult but was
diagnosed with Angelman Syndrome before age 22 he or she is considered to be an adult child Adult children may also
qualify for a childrsquos dependent benefits
SSI stands for Supplemental Security Income SSI is a needs-based program that provides financial assistance to elderly
or disabled individuals who earn very little income Eligibility for SSI is based on financial need not employment history
To qualify applicants cannot exceed specific financial limitations set in place by the SSA
In the case of a child a portion of his or her parentrsquos income will be ldquodeemedrdquo This means that the SSA will evaluate the
deemed income to determine whether or not the child meets the SSI financial eligibility requirements Deeming occurs
for children who are under the age of 18 unmarried and still live with a parent or guardian Parentsrsquo earned income
unearned income and financial resources will all be taken into consideration
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
18
Income and resources that will not be deemed includes the following
Welfare payments
Public Income Maintenance (PIM) including Temporary Assistance to Needy Families (TANF) and VA pension for
veterans
Food stamps
Disaster assistance
Foster care payments
Tax refunds on real property (property that includes land andor buildings)
Home grown produce used for personal consumption
The SSA also makes the following allowances for living expensesmdashmeaning that the following will be deducted from the
amount of income deemed to your child
$365 a month for each additional child that you support
$710 a month for a single parent or $1066 for two parents
It is important to note that this amount will not be subtracted for parents or children who already receive public assistance
Once your child turns 18 SSI payments will be based on his or her own earnings record
Medical Requirements
In addition to the previously mentioned technical requirements your child must also meet very specific medical
requirements to qualify for disability benefits The requirements can be found in a publication known as the ldquoblue bookrdquo
The SSArsquos blue book contains listings for potentially disabling conditions as well as the specific medical criteria an
applicant must meet to qualify under each condition
The SSA has separate listings for adults and children The specific medical requirement that your child will have to meet is
dependent on his or her age Your child will have to meet one or more of the following blue book listings to qualify for
disability benefits
Section 1205mdashMental Retardation (Adult)
Section 11205 ndash Mental retardation (Child)
Section 11008 B ndash Catastrophic Congenital Disorder (Child)
You can access these specific listings on the SSArsquos website
Preparing for the Social Security Disability Application Process
Even though your child qualifies for the Compassionate Allowances program you will still have to provide thorough medical
evidence that proves the extent of your childrsquos condition Medical evidence should include records of your childrsquos diagnosis
treatments response to treatments hospitalization records and medical test results You should also collect statements
from professional adults that interact with your child on a daily basis This can include doctors teachers and therapists
These statements should provide details about your childrsquos limitations and abilities
The SSA may also ask for evidence of the following
Your childrsquos inability to perform age appropriate functions
IQ test results showing a marked developmental deficit based on age
Other developmental delays and impairments in physical and mental functioning again based on age
You should collect these documents prior to beginning the application process to prevent any delays in the processing of
your childrsquos claim
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
19
Starting Your Application
The SSD application procedures will differ depending on whether you are filing for SSI benefits or SSDI dependent
benefits
If you are interested in learning more about dependent benefits you should call the SSArsquos main phone line (1-800-
772-1213) or contact the representative who handles the eligible parentrsquos claim
To apply for SSI benefits on behalf of a child you will be asked to complete two forms the ldquoApplication for
Supplemental Security Incomerdquo and the ldquoChild Disability Reportrdquo Currently only the child disability report can be
completed online You will have to schedule an appointment with your local Social Security office to complete the
application for SSI
If you are applying for SSI on behalf of an adult you will have to complete the same process with an ldquoAdult
Disability Reportrdquo rather than a child disability report
It is important that you realize how overwhelming and complicated the SSD application process may become In
fact many initial applications are denied and require the applicant to request an appeal hearing If your childrsquos
application is denied do not give up The key to receiving disability benefits it to be persistent in your efforts
For more information about applying for disability benefits visit Social Security Disability Help (wwwdisability-
benefits-helporg) or contact Molly Clarke at macssd-helporg
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
20
READ MORE ABOUT OUR ACTIVITIES AND BROWSE THE
INFORMATION PAGES HERE
httpangelmannetworkwordpresscom
Our successful International Angelman Day celebrations
held across the country
httpangelmannetworkwordpresscomlearn-
aboutwhat-is-the-angelman-network
For up to date info on Therapies
httpangelmannetworkwordpresscomtherapy-for-as
For information and ideas regarding Communication
httpangelmannetworkwordpresscomeducation-and-
communication
For general information on Epilepsy in AS
httpangelmannetworkwordpresscomangelman-
syndromeangelman-syndrome-epilepsy
The Angelman Network was
established in New Zealand as a
Charitable Trust in 2011 (CC46746)
We seek to connect and support
people impacted by Angelman
Syndrome
++++++++++++++
We are New Zealandrsquos only organisation
solely dedicated to promoting
awareness for Angelman Syndrome
and to actively promote and support
the progress being made with world-
wide research on AS
++++++++++++++
Our Information Pages are
regularly updated to include
newimproved ideas and links as
these become available
+++++++++++++++
Our aim is to offer an active and
accurate website which will become
a helpful resource for families and
provide useful and reliable information
for medical and educational
professionals both in
NZ and around the world
WE ARE ON FACEBOOK AT
Non-profit page
httpswwwfacebookcomtheangelmann
etwork
Informal group
httpswwwfacebookcomgroups10468
6089609200
Our ACTION ANGEL TEAM is an informal fundraising group who regularly raise funds and awareness for Angelman Syndrome by running in local races wearing their signature white wings
22
Shea teaches himself to read By Carol Pulver of Florida
Angel Mom to Shea 22 years old AS Del +
Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery
followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done
shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful
Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding
and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a
speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him
to sustain a suck for more than a few seconds
At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory
issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the
milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was
just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately
schedule a neurology consultation get an EEG and do blood work to check for abnormalities
Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family
pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with
the neurologist and the blood work we received some answers
I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old
The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He
told us that our son would never be able to walk to talk or to function as our other children and that we might as well
ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I
sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless
We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do
everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but
the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear
I want to share some of the things wersquove learned along this journey
1 Always trust your intuition No one knows your Angel(s) as well as you do
2 Never put a limit on your Angelrsquos abilities
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
23
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
17
Social Security Disability Benefits and Angelman Syndrome Angelman Syndrome (AS) is a complex genetic disorder characterized by developmental delays and neurological
problems Children with AS often require around-the-clock care for their entire lives
Parents of children who have AS often dedicate extra time energy and even money to provide a high quality of life for
their child Assistive technology supportive care and specialty medical treatments rack up expenses quickly Parents
may even find it necessary to take time away from work to be with their child The resulting loss of income and lack of
medical insurances can be financially devastating
If your child has been diagnosed with Angelman Syndrome he or she may qualify for financial assistance in the form of
Social Security Disability (SSD) benefits SSD payments can be used to cover your childrsquos expensesmdashincluding anything
from food to supportive services to medical bills
The following article will give you a basic overview of the options available to your family and will provide you with the
information needed to begin the SSD application process
Compassionate Allowances and Angelman Syndrome
Typically the SSD application process can take months or even years to complete Fortunately the SSA recognizes that
individuals with severely disabling conditions may not be able to wait that long to receive disability benefits For this
reason the SSA offers Compassionate Allowances (CAL) processing to individuals with certain disabilities Applicants
who have been diagnosed with conditions covered by the CAL program can receive SSD benefits in as little as 10 days
Angelman Syndrome is one of approximately 200 conditions that qualify for CAL processing You will not need to fill out
additional paperwork or request to receive CAL processing The SSA will evaluate your childrsquos claim and expedite it
accordingly
Social Security Disability Insurance and Supplemental Security Income
The SSA offers disability benefits through two separate programsmdashSSDI and SSI Each of these programs has very
specific technical eligibility requirements
SSDI stands for Social Security Disability Insurance and provides benefits to disabled workers Eligibility for SSDI is
dependent on an applicantrsquos employment history as well as the amount of taxes he or she has paid into the system
Children and young adults donrsquot often qualify for SSDI on their own record because they havenrsquot had the chance to work
and pay into the program
It is important to note that if the childrsquos parent is qualified for SSDI or retirement benefits the child may qualify for
dependent benefits based on a parent or guardianrsquos earnings record If your child is technically an adult but was
diagnosed with Angelman Syndrome before age 22 he or she is considered to be an adult child Adult children may also
qualify for a childrsquos dependent benefits
SSI stands for Supplemental Security Income SSI is a needs-based program that provides financial assistance to elderly
or disabled individuals who earn very little income Eligibility for SSI is based on financial need not employment history
To qualify applicants cannot exceed specific financial limitations set in place by the SSA
In the case of a child a portion of his or her parentrsquos income will be ldquodeemedrdquo This means that the SSA will evaluate the
deemed income to determine whether or not the child meets the SSI financial eligibility requirements Deeming occurs
for children who are under the age of 18 unmarried and still live with a parent or guardian Parentsrsquo earned income
unearned income and financial resources will all be taken into consideration
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
18
Income and resources that will not be deemed includes the following
Welfare payments
Public Income Maintenance (PIM) including Temporary Assistance to Needy Families (TANF) and VA pension for
veterans
Food stamps
Disaster assistance
Foster care payments
Tax refunds on real property (property that includes land andor buildings)
Home grown produce used for personal consumption
The SSA also makes the following allowances for living expensesmdashmeaning that the following will be deducted from the
amount of income deemed to your child
$365 a month for each additional child that you support
$710 a month for a single parent or $1066 for two parents
It is important to note that this amount will not be subtracted for parents or children who already receive public assistance
Once your child turns 18 SSI payments will be based on his or her own earnings record
Medical Requirements
In addition to the previously mentioned technical requirements your child must also meet very specific medical
requirements to qualify for disability benefits The requirements can be found in a publication known as the ldquoblue bookrdquo
The SSArsquos blue book contains listings for potentially disabling conditions as well as the specific medical criteria an
applicant must meet to qualify under each condition
The SSA has separate listings for adults and children The specific medical requirement that your child will have to meet is
dependent on his or her age Your child will have to meet one or more of the following blue book listings to qualify for
disability benefits
Section 1205mdashMental Retardation (Adult)
Section 11205 ndash Mental retardation (Child)
Section 11008 B ndash Catastrophic Congenital Disorder (Child)
You can access these specific listings on the SSArsquos website
Preparing for the Social Security Disability Application Process
Even though your child qualifies for the Compassionate Allowances program you will still have to provide thorough medical
evidence that proves the extent of your childrsquos condition Medical evidence should include records of your childrsquos diagnosis
treatments response to treatments hospitalization records and medical test results You should also collect statements
from professional adults that interact with your child on a daily basis This can include doctors teachers and therapists
These statements should provide details about your childrsquos limitations and abilities
The SSA may also ask for evidence of the following
Your childrsquos inability to perform age appropriate functions
IQ test results showing a marked developmental deficit based on age
Other developmental delays and impairments in physical and mental functioning again based on age
You should collect these documents prior to beginning the application process to prevent any delays in the processing of
your childrsquos claim
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
19
Starting Your Application
The SSD application procedures will differ depending on whether you are filing for SSI benefits or SSDI dependent
benefits
If you are interested in learning more about dependent benefits you should call the SSArsquos main phone line (1-800-
772-1213) or contact the representative who handles the eligible parentrsquos claim
To apply for SSI benefits on behalf of a child you will be asked to complete two forms the ldquoApplication for
Supplemental Security Incomerdquo and the ldquoChild Disability Reportrdquo Currently only the child disability report can be
completed online You will have to schedule an appointment with your local Social Security office to complete the
application for SSI
If you are applying for SSI on behalf of an adult you will have to complete the same process with an ldquoAdult
Disability Reportrdquo rather than a child disability report
It is important that you realize how overwhelming and complicated the SSD application process may become In
fact many initial applications are denied and require the applicant to request an appeal hearing If your childrsquos
application is denied do not give up The key to receiving disability benefits it to be persistent in your efforts
For more information about applying for disability benefits visit Social Security Disability Help (wwwdisability-
benefits-helporg) or contact Molly Clarke at macssd-helporg
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
20
READ MORE ABOUT OUR ACTIVITIES AND BROWSE THE
INFORMATION PAGES HERE
httpangelmannetworkwordpresscom
Our successful International Angelman Day celebrations
held across the country
httpangelmannetworkwordpresscomlearn-
aboutwhat-is-the-angelman-network
For up to date info on Therapies
httpangelmannetworkwordpresscomtherapy-for-as
For information and ideas regarding Communication
httpangelmannetworkwordpresscomeducation-and-
communication
For general information on Epilepsy in AS
httpangelmannetworkwordpresscomangelman-
syndromeangelman-syndrome-epilepsy
The Angelman Network was
established in New Zealand as a
Charitable Trust in 2011 (CC46746)
We seek to connect and support
people impacted by Angelman
Syndrome
++++++++++++++
We are New Zealandrsquos only organisation
solely dedicated to promoting
awareness for Angelman Syndrome
and to actively promote and support
the progress being made with world-
wide research on AS
++++++++++++++
Our Information Pages are
regularly updated to include
newimproved ideas and links as
these become available
+++++++++++++++
Our aim is to offer an active and
accurate website which will become
a helpful resource for families and
provide useful and reliable information
for medical and educational
professionals both in
NZ and around the world
WE ARE ON FACEBOOK AT
Non-profit page
httpswwwfacebookcomtheangelmann
etwork
Informal group
httpswwwfacebookcomgroups10468
6089609200
Our ACTION ANGEL TEAM is an informal fundraising group who regularly raise funds and awareness for Angelman Syndrome by running in local races wearing their signature white wings
22
Shea teaches himself to read By Carol Pulver of Florida
Angel Mom to Shea 22 years old AS Del +
Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery
followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done
shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful
Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding
and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a
speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him
to sustain a suck for more than a few seconds
At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory
issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the
milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was
just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately
schedule a neurology consultation get an EEG and do blood work to check for abnormalities
Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family
pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with
the neurologist and the blood work we received some answers
I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old
The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He
told us that our son would never be able to walk to talk or to function as our other children and that we might as well
ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I
sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless
We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do
everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but
the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear
I want to share some of the things wersquove learned along this journey
1 Always trust your intuition No one knows your Angel(s) as well as you do
2 Never put a limit on your Angelrsquos abilities
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
23
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
Social Security Disability Benefits and Angelman Syndrome Angelman Syndrome (AS) is a complex genetic disorder characterized by developmental delays and neurological
problems Children with AS often require around-the-clock care for their entire lives
Parents of children who have AS often dedicate extra time energy and even money to provide a high quality of life for
their child Assistive technology supportive care and specialty medical treatments rack up expenses quickly Parents
may even find it necessary to take time away from work to be with their child The resulting loss of income and lack of
medical insurances can be financially devastating
If your child has been diagnosed with Angelman Syndrome he or she may qualify for financial assistance in the form of
Social Security Disability (SSD) benefits SSD payments can be used to cover your childrsquos expensesmdashincluding anything
from food to supportive services to medical bills
The following article will give you a basic overview of the options available to your family and will provide you with the
information needed to begin the SSD application process
Compassionate Allowances and Angelman Syndrome
Typically the SSD application process can take months or even years to complete Fortunately the SSA recognizes that
individuals with severely disabling conditions may not be able to wait that long to receive disability benefits For this
reason the SSA offers Compassionate Allowances (CAL) processing to individuals with certain disabilities Applicants
who have been diagnosed with conditions covered by the CAL program can receive SSD benefits in as little as 10 days
Angelman Syndrome is one of approximately 200 conditions that qualify for CAL processing You will not need to fill out
additional paperwork or request to receive CAL processing The SSA will evaluate your childrsquos claim and expedite it
accordingly
Social Security Disability Insurance and Supplemental Security Income
The SSA offers disability benefits through two separate programsmdashSSDI and SSI Each of these programs has very
specific technical eligibility requirements
SSDI stands for Social Security Disability Insurance and provides benefits to disabled workers Eligibility for SSDI is
dependent on an applicantrsquos employment history as well as the amount of taxes he or she has paid into the system
Children and young adults donrsquot often qualify for SSDI on their own record because they havenrsquot had the chance to work
and pay into the program
It is important to note that if the childrsquos parent is qualified for SSDI or retirement benefits the child may qualify for
dependent benefits based on a parent or guardianrsquos earnings record If your child is technically an adult but was
diagnosed with Angelman Syndrome before age 22 he or she is considered to be an adult child Adult children may also
qualify for a childrsquos dependent benefits
SSI stands for Supplemental Security Income SSI is a needs-based program that provides financial assistance to elderly
or disabled individuals who earn very little income Eligibility for SSI is based on financial need not employment history
To qualify applicants cannot exceed specific financial limitations set in place by the SSA
In the case of a child a portion of his or her parentrsquos income will be ldquodeemedrdquo This means that the SSA will evaluate the
deemed income to determine whether or not the child meets the SSI financial eligibility requirements Deeming occurs
for children who are under the age of 18 unmarried and still live with a parent or guardian Parentsrsquo earned income
unearned income and financial resources will all be taken into consideration
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
18
Income and resources that will not be deemed includes the following
Welfare payments
Public Income Maintenance (PIM) including Temporary Assistance to Needy Families (TANF) and VA pension for
veterans
Food stamps
Disaster assistance
Foster care payments
Tax refunds on real property (property that includes land andor buildings)
Home grown produce used for personal consumption
The SSA also makes the following allowances for living expensesmdashmeaning that the following will be deducted from the
amount of income deemed to your child
$365 a month for each additional child that you support
$710 a month for a single parent or $1066 for two parents
It is important to note that this amount will not be subtracted for parents or children who already receive public assistance
Once your child turns 18 SSI payments will be based on his or her own earnings record
Medical Requirements
In addition to the previously mentioned technical requirements your child must also meet very specific medical
requirements to qualify for disability benefits The requirements can be found in a publication known as the ldquoblue bookrdquo
The SSArsquos blue book contains listings for potentially disabling conditions as well as the specific medical criteria an
applicant must meet to qualify under each condition
The SSA has separate listings for adults and children The specific medical requirement that your child will have to meet is
dependent on his or her age Your child will have to meet one or more of the following blue book listings to qualify for
disability benefits
Section 1205mdashMental Retardation (Adult)
Section 11205 ndash Mental retardation (Child)
Section 11008 B ndash Catastrophic Congenital Disorder (Child)
You can access these specific listings on the SSArsquos website
Preparing for the Social Security Disability Application Process
Even though your child qualifies for the Compassionate Allowances program you will still have to provide thorough medical
evidence that proves the extent of your childrsquos condition Medical evidence should include records of your childrsquos diagnosis
treatments response to treatments hospitalization records and medical test results You should also collect statements
from professional adults that interact with your child on a daily basis This can include doctors teachers and therapists
These statements should provide details about your childrsquos limitations and abilities
The SSA may also ask for evidence of the following
Your childrsquos inability to perform age appropriate functions
IQ test results showing a marked developmental deficit based on age
Other developmental delays and impairments in physical and mental functioning again based on age
You should collect these documents prior to beginning the application process to prevent any delays in the processing of
your childrsquos claim
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
19
Starting Your Application
The SSD application procedures will differ depending on whether you are filing for SSI benefits or SSDI dependent
benefits
If you are interested in learning more about dependent benefits you should call the SSArsquos main phone line (1-800-
772-1213) or contact the representative who handles the eligible parentrsquos claim
To apply for SSI benefits on behalf of a child you will be asked to complete two forms the ldquoApplication for
Supplemental Security Incomerdquo and the ldquoChild Disability Reportrdquo Currently only the child disability report can be
completed online You will have to schedule an appointment with your local Social Security office to complete the
application for SSI
If you are applying for SSI on behalf of an adult you will have to complete the same process with an ldquoAdult
Disability Reportrdquo rather than a child disability report
It is important that you realize how overwhelming and complicated the SSD application process may become In
fact many initial applications are denied and require the applicant to request an appeal hearing If your childrsquos
application is denied do not give up The key to receiving disability benefits it to be persistent in your efforts
For more information about applying for disability benefits visit Social Security Disability Help (wwwdisability-
benefits-helporg) or contact Molly Clarke at macssd-helporg
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
20
READ MORE ABOUT OUR ACTIVITIES AND BROWSE THE
INFORMATION PAGES HERE
httpangelmannetworkwordpresscom
Our successful International Angelman Day celebrations
held across the country
httpangelmannetworkwordpresscomlearn-
aboutwhat-is-the-angelman-network
For up to date info on Therapies
httpangelmannetworkwordpresscomtherapy-for-as
For information and ideas regarding Communication
httpangelmannetworkwordpresscomeducation-and-
communication
For general information on Epilepsy in AS
httpangelmannetworkwordpresscomangelman-
syndromeangelman-syndrome-epilepsy
The Angelman Network was
established in New Zealand as a
Charitable Trust in 2011 (CC46746)
We seek to connect and support
people impacted by Angelman
Syndrome
++++++++++++++
We are New Zealandrsquos only organisation
solely dedicated to promoting
awareness for Angelman Syndrome
and to actively promote and support
the progress being made with world-
wide research on AS
++++++++++++++
Our Information Pages are
regularly updated to include
newimproved ideas and links as
these become available
+++++++++++++++
Our aim is to offer an active and
accurate website which will become
a helpful resource for families and
provide useful and reliable information
for medical and educational
professionals both in
NZ and around the world
WE ARE ON FACEBOOK AT
Non-profit page
httpswwwfacebookcomtheangelmann
etwork
Informal group
httpswwwfacebookcomgroups10468
6089609200
Our ACTION ANGEL TEAM is an informal fundraising group who regularly raise funds and awareness for Angelman Syndrome by running in local races wearing their signature white wings
22
Shea teaches himself to read By Carol Pulver of Florida
Angel Mom to Shea 22 years old AS Del +
Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery
followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done
shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful
Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding
and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a
speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him
to sustain a suck for more than a few seconds
At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory
issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the
milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was
just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately
schedule a neurology consultation get an EEG and do blood work to check for abnormalities
Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family
pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with
the neurologist and the blood work we received some answers
I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old
The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He
told us that our son would never be able to walk to talk or to function as our other children and that we might as well
ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I
sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless
We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do
everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but
the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear
I want to share some of the things wersquove learned along this journey
1 Always trust your intuition No one knows your Angel(s) as well as you do
2 Never put a limit on your Angelrsquos abilities
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
23
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
Income and resources that will not be deemed includes the following
Welfare payments
Public Income Maintenance (PIM) including Temporary Assistance to Needy Families (TANF) and VA pension for
veterans
Food stamps
Disaster assistance
Foster care payments
Tax refunds on real property (property that includes land andor buildings)
Home grown produce used for personal consumption
The SSA also makes the following allowances for living expensesmdashmeaning that the following will be deducted from the
amount of income deemed to your child
$365 a month for each additional child that you support
$710 a month for a single parent or $1066 for two parents
It is important to note that this amount will not be subtracted for parents or children who already receive public assistance
Once your child turns 18 SSI payments will be based on his or her own earnings record
Medical Requirements
In addition to the previously mentioned technical requirements your child must also meet very specific medical
requirements to qualify for disability benefits The requirements can be found in a publication known as the ldquoblue bookrdquo
The SSArsquos blue book contains listings for potentially disabling conditions as well as the specific medical criteria an
applicant must meet to qualify under each condition
The SSA has separate listings for adults and children The specific medical requirement that your child will have to meet is
dependent on his or her age Your child will have to meet one or more of the following blue book listings to qualify for
disability benefits
Section 1205mdashMental Retardation (Adult)
Section 11205 ndash Mental retardation (Child)
Section 11008 B ndash Catastrophic Congenital Disorder (Child)
You can access these specific listings on the SSArsquos website
Preparing for the Social Security Disability Application Process
Even though your child qualifies for the Compassionate Allowances program you will still have to provide thorough medical
evidence that proves the extent of your childrsquos condition Medical evidence should include records of your childrsquos diagnosis
treatments response to treatments hospitalization records and medical test results You should also collect statements
from professional adults that interact with your child on a daily basis This can include doctors teachers and therapists
These statements should provide details about your childrsquos limitations and abilities
The SSA may also ask for evidence of the following
Your childrsquos inability to perform age appropriate functions
IQ test results showing a marked developmental deficit based on age
Other developmental delays and impairments in physical and mental functioning again based on age
You should collect these documents prior to beginning the application process to prevent any delays in the processing of
your childrsquos claim
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
19
Starting Your Application
The SSD application procedures will differ depending on whether you are filing for SSI benefits or SSDI dependent
benefits
If you are interested in learning more about dependent benefits you should call the SSArsquos main phone line (1-800-
772-1213) or contact the representative who handles the eligible parentrsquos claim
To apply for SSI benefits on behalf of a child you will be asked to complete two forms the ldquoApplication for
Supplemental Security Incomerdquo and the ldquoChild Disability Reportrdquo Currently only the child disability report can be
completed online You will have to schedule an appointment with your local Social Security office to complete the
application for SSI
If you are applying for SSI on behalf of an adult you will have to complete the same process with an ldquoAdult
Disability Reportrdquo rather than a child disability report
It is important that you realize how overwhelming and complicated the SSD application process may become In
fact many initial applications are denied and require the applicant to request an appeal hearing If your childrsquos
application is denied do not give up The key to receiving disability benefits it to be persistent in your efforts
For more information about applying for disability benefits visit Social Security Disability Help (wwwdisability-
benefits-helporg) or contact Molly Clarke at macssd-helporg
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
20
READ MORE ABOUT OUR ACTIVITIES AND BROWSE THE
INFORMATION PAGES HERE
httpangelmannetworkwordpresscom
Our successful International Angelman Day celebrations
held across the country
httpangelmannetworkwordpresscomlearn-
aboutwhat-is-the-angelman-network
For up to date info on Therapies
httpangelmannetworkwordpresscomtherapy-for-as
For information and ideas regarding Communication
httpangelmannetworkwordpresscomeducation-and-
communication
For general information on Epilepsy in AS
httpangelmannetworkwordpresscomangelman-
syndromeangelman-syndrome-epilepsy
The Angelman Network was
established in New Zealand as a
Charitable Trust in 2011 (CC46746)
We seek to connect and support
people impacted by Angelman
Syndrome
++++++++++++++
We are New Zealandrsquos only organisation
solely dedicated to promoting
awareness for Angelman Syndrome
and to actively promote and support
the progress being made with world-
wide research on AS
++++++++++++++
Our Information Pages are
regularly updated to include
newimproved ideas and links as
these become available
+++++++++++++++
Our aim is to offer an active and
accurate website which will become
a helpful resource for families and
provide useful and reliable information
for medical and educational
professionals both in
NZ and around the world
WE ARE ON FACEBOOK AT
Non-profit page
httpswwwfacebookcomtheangelmann
etwork
Informal group
httpswwwfacebookcomgroups10468
6089609200
Our ACTION ANGEL TEAM is an informal fundraising group who regularly raise funds and awareness for Angelman Syndrome by running in local races wearing their signature white wings
22
Shea teaches himself to read By Carol Pulver of Florida
Angel Mom to Shea 22 years old AS Del +
Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery
followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done
shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful
Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding
and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a
speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him
to sustain a suck for more than a few seconds
At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory
issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the
milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was
just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately
schedule a neurology consultation get an EEG and do blood work to check for abnormalities
Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family
pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with
the neurologist and the blood work we received some answers
I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old
The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He
told us that our son would never be able to walk to talk or to function as our other children and that we might as well
ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I
sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless
We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do
everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but
the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear
I want to share some of the things wersquove learned along this journey
1 Always trust your intuition No one knows your Angel(s) as well as you do
2 Never put a limit on your Angelrsquos abilities
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
23
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
Starting Your Application
The SSD application procedures will differ depending on whether you are filing for SSI benefits or SSDI dependent
benefits
If you are interested in learning more about dependent benefits you should call the SSArsquos main phone line (1-800-
772-1213) or contact the representative who handles the eligible parentrsquos claim
To apply for SSI benefits on behalf of a child you will be asked to complete two forms the ldquoApplication for
Supplemental Security Incomerdquo and the ldquoChild Disability Reportrdquo Currently only the child disability report can be
completed online You will have to schedule an appointment with your local Social Security office to complete the
application for SSI
If you are applying for SSI on behalf of an adult you will have to complete the same process with an ldquoAdult
Disability Reportrdquo rather than a child disability report
It is important that you realize how overwhelming and complicated the SSD application process may become In
fact many initial applications are denied and require the applicant to request an appeal hearing If your childrsquos
application is denied do not give up The key to receiving disability benefits it to be persistent in your efforts
For more information about applying for disability benefits visit Social Security Disability Help (wwwdisability-
benefits-helporg) or contact Molly Clarke at macssd-helporg
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
20
READ MORE ABOUT OUR ACTIVITIES AND BROWSE THE
INFORMATION PAGES HERE
httpangelmannetworkwordpresscom
Our successful International Angelman Day celebrations
held across the country
httpangelmannetworkwordpresscomlearn-
aboutwhat-is-the-angelman-network
For up to date info on Therapies
httpangelmannetworkwordpresscomtherapy-for-as
For information and ideas regarding Communication
httpangelmannetworkwordpresscomeducation-and-
communication
For general information on Epilepsy in AS
httpangelmannetworkwordpresscomangelman-
syndromeangelman-syndrome-epilepsy
The Angelman Network was
established in New Zealand as a
Charitable Trust in 2011 (CC46746)
We seek to connect and support
people impacted by Angelman
Syndrome
++++++++++++++
We are New Zealandrsquos only organisation
solely dedicated to promoting
awareness for Angelman Syndrome
and to actively promote and support
the progress being made with world-
wide research on AS
++++++++++++++
Our Information Pages are
regularly updated to include
newimproved ideas and links as
these become available
+++++++++++++++
Our aim is to offer an active and
accurate website which will become
a helpful resource for families and
provide useful and reliable information
for medical and educational
professionals both in
NZ and around the world
WE ARE ON FACEBOOK AT
Non-profit page
httpswwwfacebookcomtheangelmann
etwork
Informal group
httpswwwfacebookcomgroups10468
6089609200
Our ACTION ANGEL TEAM is an informal fundraising group who regularly raise funds and awareness for Angelman Syndrome by running in local races wearing their signature white wings
22
Shea teaches himself to read By Carol Pulver of Florida
Angel Mom to Shea 22 years old AS Del +
Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery
followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done
shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful
Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding
and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a
speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him
to sustain a suck for more than a few seconds
At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory
issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the
milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was
just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately
schedule a neurology consultation get an EEG and do blood work to check for abnormalities
Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family
pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with
the neurologist and the blood work we received some answers
I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old
The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He
told us that our son would never be able to walk to talk or to function as our other children and that we might as well
ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I
sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless
We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do
everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but
the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear
I want to share some of the things wersquove learned along this journey
1 Always trust your intuition No one knows your Angel(s) as well as you do
2 Never put a limit on your Angelrsquos abilities
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
23
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
READ MORE ABOUT OUR ACTIVITIES AND BROWSE THE
INFORMATION PAGES HERE
httpangelmannetworkwordpresscom
Our successful International Angelman Day celebrations
held across the country
httpangelmannetworkwordpresscomlearn-
aboutwhat-is-the-angelman-network
For up to date info on Therapies
httpangelmannetworkwordpresscomtherapy-for-as
For information and ideas regarding Communication
httpangelmannetworkwordpresscomeducation-and-
communication
For general information on Epilepsy in AS
httpangelmannetworkwordpresscomangelman-
syndromeangelman-syndrome-epilepsy
The Angelman Network was
established in New Zealand as a
Charitable Trust in 2011 (CC46746)
We seek to connect and support
people impacted by Angelman
Syndrome
++++++++++++++
We are New Zealandrsquos only organisation
solely dedicated to promoting
awareness for Angelman Syndrome
and to actively promote and support
the progress being made with world-
wide research on AS
++++++++++++++
Our Information Pages are
regularly updated to include
newimproved ideas and links as
these become available
+++++++++++++++
Our aim is to offer an active and
accurate website which will become
a helpful resource for families and
provide useful and reliable information
for medical and educational
professionals both in
NZ and around the world
WE ARE ON FACEBOOK AT
Non-profit page
httpswwwfacebookcomtheangelmann
etwork
Informal group
httpswwwfacebookcomgroups10468
6089609200
Our ACTION ANGEL TEAM is an informal fundraising group who regularly raise funds and awareness for Angelman Syndrome by running in local races wearing their signature white wings
22
Shea teaches himself to read By Carol Pulver of Florida
Angel Mom to Shea 22 years old AS Del +
Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery
followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done
shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful
Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding
and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a
speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him
to sustain a suck for more than a few seconds
At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory
issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the
milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was
just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately
schedule a neurology consultation get an EEG and do blood work to check for abnormalities
Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family
pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with
the neurologist and the blood work we received some answers
I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old
The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He
told us that our son would never be able to walk to talk or to function as our other children and that we might as well
ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I
sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless
We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do
everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but
the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear
I want to share some of the things wersquove learned along this journey
1 Always trust your intuition No one knows your Angel(s) as well as you do
2 Never put a limit on your Angelrsquos abilities
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
23
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
22
Shea teaches himself to read By Carol Pulver of Florida
Angel Mom to Shea 22 years old AS Del +
Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery
followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done
shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful
Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding
and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a
speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him
to sustain a suck for more than a few seconds
At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory
issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the
milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was
just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately
schedule a neurology consultation get an EEG and do blood work to check for abnormalities
Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family
pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with
the neurologist and the blood work we received some answers
I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old
The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He
told us that our son would never be able to walk to talk or to function as our other children and that we might as well
ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I
sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless
We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do
everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but
the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear
I want to share some of the things wersquove learned along this journey
1 Always trust your intuition No one knows your Angel(s) as well as you do
2 Never put a limit on your Angelrsquos abilities
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
23
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
Shea teaches himself to read By Carol Pulver of Florida
Angel Mom to Shea 22 years old AS Del +
Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery
followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done
shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful
Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding
and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a
speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him
to sustain a suck for more than a few seconds
At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory
issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the
milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was
just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately
schedule a neurology consultation get an EEG and do blood work to check for abnormalities
Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family
pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with
the neurologist and the blood work we received some answers
I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old
The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He
told us that our son would never be able to walk to talk or to function as our other children and that we might as well
ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I
sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless
We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do
everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but
the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear
I want to share some of the things wersquove learned along this journey
1 Always trust your intuition No one knows your Angel(s) as well as you do
2 Never put a limit on your Angelrsquos abilities
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
23
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
Shea taught himself to read
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a
word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over
again) with the little bouncing ball over each word as it is sung He still enjoys watching them
3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our
kids Remember that no one else cares as much as you do
4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them
choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is
made Make sure teachers and therapists are aware of this and are patient
5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may
alleviate the severity of seizures
6 There are moms and dads around the globe that are dealing with or have found the answer to many of the
problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and
Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help
one another
When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the
diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a
neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a
young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand
the directions he was given by his mom
We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in
his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an
Angelrsquos abilities
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
24
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
25
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
Reflexology
By Mariano Schiffini
At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the
benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman
are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the
entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers
through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating
the self healing energy of the body
Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have
repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all
children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so
that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds
to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and
communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self
healing energy that promotes a state of homeostasis
During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this
more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly
until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into
consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are
light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity
causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it
completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of
working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the
corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene
atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing
essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS
I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall
asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will
participate happily
In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and
take their roots
Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar
Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who
suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml
Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman
ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that
my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once
the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it
was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
Gluten Free Living
By Isabel Orellana
Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10
percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However
the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten
because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating
about neurological differences and food related issues it became clear to us that our angel would continue his gluten
free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or
later For neurologically different kids it can make a huge difference and be an important contributing factor in
maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for
thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors
such as a weakened gut due to medications and processed foods
What is gluten
Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people
sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat
processing facility
Where do I find gluten
Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with
ingredients such as soy sauce etc
How can gluten affect special needs kids
Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to
gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic
substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom
management
What are symptoms of gluten sensitivity
Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not
everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms
are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability
What options are there
Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options
However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully
since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic
index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as
inflammation control
Conclusion
Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original
state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple
carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your
gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your
journey today You have nothing to lose
GF
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
27
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman
Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies
and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting
recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has
worked best for them as a family in order to help other special needs families She juggles her time between her
family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group
Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health
and development Her book Healthy Living for Special Needs will be coming out this summer
Helpful links
httponlinewsjcomarticleSB10001424052748704893604576200393522456636html
httpwwwnaturalnewscomgluten_intolerancehtml
httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml
httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html
httpwwwceliaccom
httpwwwceliaccentralorgnon-celiac-gluten-sensitivity
Some helpful tips to remember when meal planning
-Always keep it simple
-Fruits Veggies and Meats are naturally Gluten Free
Angelman Today July edition wwwangelmantodaycom 28
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy
By Nealie Prewitt of Missouri
Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel
meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the
biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something
some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be
the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an
ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter
was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep
drastically improved but Carter still seemed to have cycles of very little sleep
We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back
positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going
gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see
the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter
was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system
improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what
he was doing to cope with constant digestive discomfort burning itching skin and headaches
Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head
banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to
use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for
peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us
and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all
of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess
He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that
missing piece that leaves Carter aimlessly floundering thru each day
Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate
we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and
I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to
be that missing piece that Carter needed
Angels in Action
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
29
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development
Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday
when I look at Carter and see my Angel happy growing maturing successful and building social relationships without
aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is
in he is not trained in social graces but has been given the ability to think for himself about how to make socially
acceptable choices
A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope
with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever
was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is
wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and
with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for
finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of
time work and support and is still a work in progress as he is making the connections that something happened to cause
the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not
understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body
language
If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is
banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would
bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his
head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step
back and watch the person that is crying When Carter started to follow our cues without head banging and could choose
to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new
behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person
was upset
When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started
modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if
they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away
from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee
means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a
lot of time but he has gained a lot of other thinking processes too during this time
Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love
this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies
to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter
what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the
flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes
without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior
can be overlooked when there is growth in another area but heartless ignoring has no place in this approach
With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so
relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and
rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing
this was through Dynamic Pathways and the RDI approach
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
30
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding
success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry
Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are
delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every
success with this exciting endeavour
Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman
Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date
which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is
already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15
ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to
Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS
Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway
Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd
Robert MoynihanmdashFinance amp Governance
Ashling KearnsmdashMarketing Strategy
Sarah Roartymdash Parent
Sara HetheringtonmdashParent
Vincent GribbinmdashParent
The purpose of this day is to
1 Raise awareness worldwide of Angelman Syndrome
2 Mobilise people to action amp encourage fundraising for the
individual organisation in their country
3 Promote research and educational resources in the
organisationrsquos own country
4 Remember those people with Angelman Syndrome who are no
longer with us
Next steps that have been discussed are
1 Formalise an international working group to plan and coordinate annual activities
2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th
3 Develop a website as a permanent home and central repository for all activities
You can find out about our organisation on wwwangelmanie
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic
Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by
Dr Daniel Siegel from the MindSight Institute
When children and families participate in our program they acquire the skills and abilities to make mindful
thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social
settings Children learn how to learn both academically and socially Children become apprentices to their
parents so they can see the world through their eyes and learn the appropriate morals and values of their family In
addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday
situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their
child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise
Children who experience success with our program are observed to be happier and more thoughtful children who
make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive
andor inappropriate behaviors both at home and in social settings
Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet
in person receive services via an online system
wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286
Dynamic Pathways a Family Resource and Child
Education Center believes all children regardless
of their special need or diagnosis have the ability to
become mindful engaged learners someone who
is capable of making decisions solving problems
and communicating with others Our program
Most of us are either visual or auditory learners But
when these two senses are not enough you may need to
physically show an individual where the tongue lips and
jaw should go for speech and feeding skills
The Z-Vibe is an ideal tool to help you do so as it
provides targeted tactile cues within the oral cavity It
can also be turned on to vibrate The smooth gentle
vibration wakes up the mouth and can help increase
oral awareness decrease mouth stuffing reduce
drooling decrease oral defensiveness and texture
aversions and more Vibration can also be very calming
soothing and organizing especially for sensory seekers
who crave oral input There are over 35 different tip
attachments available from spoons to brushes to animals
and more which offer a vast range of sensory input
For more information on the Z-Vibe please visit our blog
and website at wwwARKTherapeuticcom
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
32
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
Happy 4th
of July
From your friends at
33
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is
to stare at baby Sarah for a moment laugh at her and crawl away
Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom
If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every
single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to
workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids
understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until
Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my
workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and
imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My
mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo
Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be
A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to
outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and
eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and
relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids
deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps
me to be the Mom I want to be
Q What is your kidsrsquo diet like
A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and
vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt
like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to
raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it
was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I
feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and
high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other
people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire
cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the
day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face
future disability as a result of the excess weight
Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel
Let me introduce you to a very special Texan Mom with five children Jessica Included in
her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his
mom with the babies and who loves spending time with all of his siblings Next in line is 8
year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what
he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)
very social and lively girl who keeps mom on her toes That brings us to the babies baby
1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he
laughs at everything and is slow to develop at the same rate as his older angel siblings
so mom is certain that she has been blessed with a third angel here Then there is baby
2 the animated on the go little Sarah (typical) who tries to get her partner in crime
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
34
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
Q How is the health of your children
A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting
about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago
when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having
seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she
is healthy and seizure free I feel really lucky that my two other angels have never had seizures
Q What was one of your proudest moments as an angel mom
A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying
a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them
But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when
she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often
wished that I had been able to record that moment This experience made me realize that I just have to keep working
with them because even when I donrsquot think they are ldquogetting itrdquo they just might be
Q Is there anything else that you would like to share with our readers about your family or your experience with
Angelman syndrome
A For me it was always important that my children be well behaved and well mannered This means that I was sure to
be strict with them My children have to eat properly at the table with their backs straight and using utensils In past
years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for
life Today those same family members now tell me what a good mom they think I am I guess that they now see that
they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really
supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I
need Itrsquos great to feel supported
Note from the writer I found this motherrsquos story so inspirational and
the message here is to take really good care of yourself even when
itrsquos not so easy You might be a better mother for it or at least yoursquoll
feel good while doing it I know the next time that I feel too stressed to
workout or there is not enough time to eat a healthy meal I will think
of Jessica and I will certainly feel inspired to have a good workout and
meal
-Karen VanPuyenbroeck
J
e
s
s
i
c
a
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get
advice talk with other parents and find out about upcoming
giveaways
35
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience
Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later
WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use
of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or
walking This is a fun activity that you the parent can provide in the comfort of your own home
Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable
aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more
rest too
Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the
neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a
coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications
often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI
motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue
swimming is an excellent activity for overall fitness
Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits
from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates
visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light
pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the
benefit of avoiding the high chlorine content of a public pool
Most individuals with Angelman syndrome make steady developmental progress and do not regress The three
sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence
as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies
wwwwaterwaybabiescom
Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be
especially appealing to most individuals with Angelman syndrome making swim
therapy a popular option Now with WaterWayBabies parents can provide their child
the simplest least expensive easiest way to experience immense joy and sense of
freedom The WaterWayBabies neck ring allows independence and safety Arms
move freely without the binding restriction of a life jacket And the body is held upright
not back-floating as with other bulky head floats So your child can join in the fun
playing comfortably in the water with friends or swimming freely on herhis own With
your Angelsrsquo strong desire for personal interaction with others the socialization
Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product
ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It
gives him a lot of independence in the pool and tub (always supervised of course) and has helped
him strengthen his hypotonic muscles We love itrdquo
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
36
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette
86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families
of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a
specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome
falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring
for one (or more) children with Angelman Syndrome (AS) are high
We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers
and fathers as well a many blended families where the one of the parents is not biologically related to the Angel
This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal
with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses
winning out over the reasons the couple married in the first place
What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial
(and I do mean partial) list here are a few
middot sleep deprivation
middot constant messes
middot frequent breakage of items around the house
middot seizures
middot GGJNGNJ tubes
middot multiplefrequent surgeries
middot Childrens Aid involvement
middot unhelpfulnon-understanding family andor friends
middot finances
middot lack of respite
middot worry about future for Angel
hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage
It is important to point something out right away Very few of the stresses above are going to go away They will always be with
you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go
away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and
husband or wife and wife) in a marriage that has an AS child in the mix
The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your
spouse your children and your friends and family
We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly
off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out
on our spouses
More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and
an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and
headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the
one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that
with all that happens in their day their spouse could not possibly think they even approach their contribution but Your
contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all
day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you
may think it is
I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either
So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would
even out the perception of unequal work around the home
Yes there is indeed a solution but it is anything but magical
Communication
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
37
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about
communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is
often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what
stresses them out about you and accepting it
Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak
at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions
For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who
thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me
I Was Wrong
Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are
thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should
stop reading right now You have not reached the stage of personal development where you are capable of having a truly
equal marriage
So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those
reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be
very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo
Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do
not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to
revealing that the couple is engaged in a very bad habit The tally system
The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore
I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres
the secret There can be no tally system in a marriage There will be days where the wife does more than the husband
There will be days where the husband does more than the wife There will even be weeks where both of these are true
However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire
marriage Yep Im talking 50 60 or even more years
You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good
that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down
and have the conversation about what each person feels they contribute not only might you find it surprising that they feel
they contribute a lot but that they are correct
So how do you go about having this ldquocommunicationrdquo thing
First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the
plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)
Often it can be started something like this
ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more
often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening
after the kids are in bed and have a frank discussion with each other rdquo
How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion
ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too
It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are
the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that
you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the
next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time
When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know
has been annoying them about you This is important because you will be showing a willingness right up front that this isnt
about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
38
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone
you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper
parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)
Now that youve planned this discussion what is it exactly that you talk about
It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a
tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to
be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave
cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a
shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each
of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend
to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start
small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are
showing yourself that it is possible ndash and that it has positive results
It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner
contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both
the words you choose as well as your tone that makes the difference
For example saying
ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors
appointments and what do you do You sit your hind end on the chair and drink beerrdquo
Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook
and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors
appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not
saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do
sometimes feel that wayrdquo
At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not
handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no
matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this
evening into something shell remember forever with a smilerdquo
Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even
though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride
TO BE CONTINUEDhellip
September edition
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
39
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
Happy
Canada
Day
From your friends at
40
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
41
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
42
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today
43
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44
Thank you for checking out the first edition of Angelman Today
Great Resource Serving the
Needs of the
Angelman Community
We are just getting started
We would like to hear from you
If you would like to submit an article for Angels in Action or tell us
about a therapy that is working very well please email your story
to us at angelmantodaygmailcom
Next Month will feature Back to School topics more research more foundations Angels in Action
helpful tips and resources to help you and your family TODAY
wwwangelmantodaycom
PRICELESS Information
Delivered Digitally to you
for
FREE
44