Neswletter Vol 4 - 2011

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December 16th, 2011 GRADSA Annual Christmas Party

First General Baptist Church

620 Maple Avenue, Owensboro, KY

6:00 p.m. to 9:00 p.m.

Come join the fun. We will have a gift for each family, door prizes, chil-dren's activities and a wonderful dinner. Most important, Santa will behere. We will also be sharing some important announcements forGRADSA in 2012. RSVP to Carla at 925-0195 or [email protected]

We are currently working on an event for December so watch your mail and emails.

Hello Everyone

WOW,first I want to apologize for this edition being so late. Between DSAW and be-ing sick afterwards I have not accomplished a whole lot. I cannot believe the Holidays

are quickly approaching. Are you ready? Check out the article inside on Less Stress forthe Holidays.

Come on guys, I am confident there are still a lot of email address that I do not have.Please remember, this is the best way to keep updated so send those emails to me. Wedo have a lot of In our Community in this issue but I still want more! Some inspira-tional stories would be awesome.

DSAW 2011 was a huge success. Thanks so much to everyone who made this happen.

There is more information and some pictures inside so check it out.

As always Thank You so much for allowing me to be a part of GRADSA.

Our children and adults with Down syndromeOur children and adults with Down syndromeOur children and adults with Down syndromeOur children and adults with Down syndrome

are the heart of our organization and our most precious gifts.are the heart of our organization and our most precious gifts.are the heart of our organization and our most precious gifts.are the heart of our organization and our most precious gifts.

Volume 4 2011Volume 4 2011Volume 4 2011Volume 4 2011

Comments from Carla...

UPCOMING EVENTS

2012

Our next newsletter will be out in January. Make sure you check out the

upcoming events at that time. We are currently working on some educationalworkshops along with some events. If you have any suggestions of what youwould love to see GRADSA do in 2012 please let us know ASAP.


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Below is the BIO I promised you on Renea Estes. We have not received one for Kim Hartmanbut I can assure you we are blessed to have her on the board.

Renea Estes was born and raised in Evansville, IN but spent the last twelve years in BowlingRenea Estes was born and raised in Evansville, IN but spent the last twelve years in BowlingRenea Estes was born and raised in Evansville, IN but spent the last twelve years in BowlingRenea Estes was born and raised in Evansville, IN but spent the last twelve years in Bowling

Green, KY. In 2010 she moved to Owensboro with her husband Jonathon and 3 childrenGreen, KY. In 2010 she moved to Owensboro with her husband Jonathon and 3 childrenGreen, KY. In 2010 she moved to Owensboro with her husband Jonathon and 3 childrenGreen, KY. In 2010 she moved to Owensboro with her husband Jonathon and 3 childrenMason 5, Luke 3, and Chapel 2 to be closer to the family. She graduated from Western Ken-Mason 5, Luke 3, and Chapel 2 to be closer to the family. She graduated from Western Ken-Mason 5, Luke 3, and Chapel 2 to be closer to the family. She graduated from Western Ken-Mason 5, Luke 3, and Chapel 2 to be closer to the family. She graduated from Western Ken-tucky University with a degree in Health Care Administration. She has spent thirteen yearstucky University with a degree in Health Care Administration. She has spent thirteen yearstucky University with a degree in Health Care Administration. She has spent thirteen yearstucky University with a degree in Health Care Administration. She has spent thirteen yearsin the healthcare industry, the last eight as a pharmaceutical representative.in the healthcare industry, the last eight as a pharmaceutical representative.in the healthcare industry, the last eight as a pharmaceutical representative.in the healthcare industry, the last eight as a pharmaceutical representative.

Renea enjoys spending time with her three children, helping others and volunteering herRenea enjoys spending time with her three children, helping others and volunteering herRenea enjoys spending time with her three children, helping others and volunteering herRenea enjoys spending time with her three children, helping others and volunteering hertime at church. She is excited and honored to serve on the board to help other families withtime at church. She is excited and honored to serve on the board to help other families withtime at church. She is excited and honored to serve on the board to help other families withtime at church. She is excited and honored to serve on the board to help other families withDown syndrome children. She hopes to learn more about resources available to ChapelDown syndrome children. She hopes to learn more about resources available to ChapelDown syndrome children. She hopes to learn more about resources available to ChapelDown syndrome children. She hopes to learn more about resources available to Chapeland others with Down syndrome and help increase development and appreciation of theirand others with Down syndrome and help increase development and appreciation of theirand others with Down syndrome and help increase development and appreciation of theirand others with Down syndrome and help increase development and appreciation of theirtalents in the community.talents in the community.talents in the community.talents in the community.

On a lighter note

It is with remorse that I announce Dwight Beyke has resigned from the board. Dwight hasIt is with remorse that I announce Dwight Beyke has resigned from the board. Dwight hasIt is with remorse that I announce Dwight Beyke has resigned from the board. Dwight hasIt is with remorse that I announce Dwight Beyke has resigned from the board. Dwight hasserved several years on the GRADSA Board and has helped in so many ways. He was aserved several years on the GRADSA Board and has helped in so many ways. He was aserved several years on the GRADSA Board and has helped in so many ways. He was aserved several years on the GRADSA Board and has helped in so many ways. He was ahuge asset in corporate funding for DSAW and also the Lions Club eyeglass programhuge asset in corporate funding for DSAW and also the Lions Club eyeglass programhuge asset in corporate funding for DSAW and also the Lions Club eyeglass programhuge asset in corporate funding for DSAW and also the Lions Club eyeglass programamong others. The board will truly miss Dwight and hope his future brings nothing butamong others. The board will truly miss Dwight and hope his future brings nothing butamong others. The board will truly miss Dwight and hope his future brings nothing butamong others. The board will truly miss Dwight and hope his future brings nothing butgood things for him and his family. Hopefully we will see Dwight, Becky and Will at GRADSAgood things for him and his family. Hopefully we will see Dwight, Becky and Will at GRADSAgood things for him and his family. Hopefully we will see Dwight, Becky and Will at GRADSAgood things for him and his family. Hopefully we will see Dwight, Becky and Will at GRADSAevents.events.events.events.

WELCOME

Whats AppeningApps, Apps and more apps...check these out:I Touch I Learn Life Skills...for toddler, preschool and special need kids. Features learning thru musicand engaging activities. Available at Itunes.

I Touch I Learn Words...How to recognize and pronounce words thru short, narrated animations that teachthe context of words. Available at Itunes.

Count and Write Numbers 1-30...Teaches kids how to count and write numbers in a fun effective way inEnglish and Spanish. Available at Itunes.

Calm Counter...Anger Management. A visual and audio tool to help people calm down when they are angryor anxious. Available at Itunes.

Life Skills Winner...Teaches life and social skills in an interactive way with positive feedback thru a mobiledevice. Available at Amazon and Android App Store.

Discover My Voice...Alternative and augmentative aide designed to help non-verbal, low cognitive peoplecommunicate their needs and desires. Available at Android App Store.

Wheres Mommy?...Teaches basic searching and motor skills. Available at Android App Store and Itunes.

Vocal Slides...Able to create image libraries: every picture can be related to a vocal message and visual-ized. Available at Android App Store.


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iPad Funding Sources Directory...by SNAPPS4KIDS.comA4cwsn

Apps for children with Special Needs would like to provide iPads to as many families dealing with Special Needs as

possible. All you have to do to be eligible is register with A4cwsn, follow them on Twitter and/or Facebook then

send a letter detailing why your family needs an iPad and how it will help.

http://a4ewsn.com/ipad2-4u/

Special Kids Therapy

Special Kids therapy is a non-profit Section 501(3) charity that is dedicated to assisting special health care

needs children and their families obtain alternative therapies or necessities that have the potential to signifi-

cantly enhance the quality of life for the child. This support is in the form of a scholarship to be used for

those therapies or activities that are not funded by public insurance, other charities or government agencies.

http://www.specialkidstherapy.org/forms.php

Babies with iPads

Babies with iPads will be granting iPads 16gb to deserving children as often as funds allow.

http://babieswithipads.blogspot.com/p/babies-with-ipads-grant-application.html

Parkers Purpose

As individuals of Parkers Purpose we commit as part of our team to provide the highest level of service to ill, dis-

abled children who are in an immediate financial crisis. We will perform our service with integrity and respect

while also hoping to foster a positive self worth and self esteem to the individuals giving. We will strive to pro-

vide funds and professional services, regardless of race, color and/or religion, as representatives of Parkers Pur-

pose.

http://parkerspurpose.net.undes.php?page=application-for-assistance

Small Steps I Speech

The mission of Small Steps in Speech is to help children with speech and/or language disorders take the steps

needed to be better communicators. This is achieved through grants and donations to service providers and

qualifying charitable organizations.

http://www.smallstepsinspeech.org/application

The Shape of the Eye by George Estreich

George Estreich, a poet and stay-at-home dad, writes movingly and beautifully about his family after Laura ar-

rives on the scene with an unexpected extra chromosome and a significant heart defect. George revisits his fam-

ilys journey, from those first days of shock to life with Down syndrome being ordinary and extraordinary at the

same time. Blessings come in the most unexpected ways.

Off We Go! Children Series by Avril Webster

Trips to the grocery store, haircuts, dentist, etc. The author created these social stories to help her own son

who has an intellectual disability. The illustrations are colorful but simple. The text uses simple sentences in

large type. These books will be helpful for both children and parents. Children will better understand what to

expect and parents will better understand all of the little things that add up to make these events overwhelming

and what to do to help keep these things manageable.

Book Reviews...Down syndrome News Volume 34 2011 #4


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Mock My Pants, Not My Sister...by Children's Hospital Boston staff on 07/18/11published in DSSRI August 2011

If any of you have visited our website lately you will see that it is Under Construction. Most of the information

has been updated. The only thing now being worked on is uploading the newsletters and pictures. We are hoping

to have this completed by the end of the year so be sure and check it out at www.gradsa.org

A very special thank you to Eric Kyle at Red Pixel for the time and training he donated

to make this happen. We could not have done it without him!

COMING SOON...

The following was written by Brian Skotko, MD, MPP, a Physician at Childrens Hospital Bostons DownSyndrome Program. Its in response to a feature in GQ magazine that used insensitive language.

On July 15th, John B. Thompson of GQ magazine slammed Bostonians as the worstdressed in the nation. Evidently, our beloved Beantown is actually a bad-taste storm

sewer where all the worst fashion ideas come to stagnate and putrefy. He further de-cries, Boston suffers from a kin of Style Down Syndrome, where a little extra ends up ruin-ing everything.

Go ahead, GQ, and mock my blue whale-emblemed Nantucket-red pants. Laugh if youwant at the loud argyles that I prefer to wear with my black suit. I dont even care if youdismiss the sexy pink polka-dotted tie that I like to wear with my blue-checkered shirt inclinic. But, whatever you do , do not mess with my sister.

My sister, Kristin, has Down syndrome, and let me explain what Style Down Syndromereally is. Style Down Syndrome is smiling when everyone else prefers to frown. Itsspending three summers, in sheer determination, learning to ride a bike because you want

the freedom to be like everyone else. Its singing tunes from Grease at the top of yourlungs with your friends. Its celebrating a third place victory at a swim meet with as muchgusto as the gold medalist.

Style Down Syndrome is strong-willed, persevering, and forgiving-because it has to be.

People with Down syndrome are ridiculed on a daily basis. Although not as obvious asGQs sport, children with Down syndrome do not always get invited to birthday parties justbecause they have Down syndrome. Young adults, freshly minted from high school, some-times have trouble finding post-secondary opportunists. And, adults with Down syndromeare often the first to be fired when the economy tanks.

All of this comes at a time when people with Down syndrome are achieving previouslyunimagined successes. They are graduating, working, living and loving within our commu-nities. So, why do people underestimate their abilities? It must be because they do notknow someone with Down syndrome. Because, if they did, they would come to appreciatethe life lessons that accompany their extra chromosome.

If my friends who are black were mocked, the would not take it. If my friends who aregay were slurred, they would not take it. My 400,000 Americans with Down syndromehave been cheapened, and I will not take it. I invite GQ magazine to introduce its readersto real people with Down syndrome through the My Great Story campaign of the NationalDown Syndrome Society.

For more information on Dr. Skotko and Childrens Down Syndrome Program, visit their

Facebook page.


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Ask the Expert...from Common Bonds Vol 9 Issue 2

How do I know if my child has sleep apnea?

Snoring and obstructive sleep apnea are both breathing disorders that occur during sleepdue to narrowing or total closure of the airway. Snoring is a noise created by the partialclosure of the airway, which may often be more problematic than the noise itself. How-

ever, consistent, loud, heavy snoring has been linked to medical disorders such as highblood pressure. Obstructive sleep apnea is a serious condition where the airway totallycloses many times during the night and can significantly reduce oxygen levels in the bodyand disrupt sleep. In carrying degrees, this can result in excessive daytime sleepiness, ir-regular heartbeat, high blood pressure and occasionally heart attack and stroke.

Individuals who have Down syndrome have a number of risk factors that contribute to thischallenge. Some of the anatomical structures of the face can be one contributing factor.Weight is another factor that can affect the flow of air through the airway, and Thyroid dis-ease is another component that can contribute to the level of risk. According to aJournalof Sleep Medicine article, children who have Down syndrome have a 30-50% prevalence,and adults with Down syndrome have even more factors for sleep apnea.

How do you know if you have sleep apnea? A sleep physician needs to diagnose this,based on the results of an overnight sleep study (polysomnogram).

How do I treat sleep apnea? There are a few ways to improve this condition. A weightmanagement program may be beneficial. Avoiding alcohol and tobacco is also helpful.Sleeping on your side can decrease the severity of the problem.

If it has been determined by a physician that a patient has sleep apnea, medical dn dentaltreatments can be helpful.

Do not ignore it! Sleep is good; proper sleep is great!

A new website launched in October and with backing from the federal government is offering a on-stop overview

of the services available to people with developmental disabilities in each state. The site offers a breakdown ofthe various Medicaid benefits-including medical and social services-offered to those with disabilities based on

where they live. This site is designed to help families wade through the bureaucracy, according to officials as

The Arc, who created the new website with funding from the U.S. Department of Health and Human Services. In

addition to providing basic information about each states offerings, the reference desk also features a glossary

of common terms and a selection of frequently asked questions about Medicaid benefits. This website helps in-

dividuals with intellectual and developmental disabilities and others access and gain knowledge about Medicaid,

which is an essential lifeline for millions of individuals with disabilities and their families. said Peter Berns, CEO

of The Arc. www.thedesk.info/

Guide to Disability Services...Disability Scoop 10-07-11


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DSAW 2011...DSAW 2011 was a huge success and so much fun. Donations totaled $32,769.88 whichis up about $11,000.00 from last year. A large part of this is due to Corporate Spon-sors and we would like to give a big shout out to Dwight Beyke for his help in this. Wewould also like to thank all of you that attended, volunteered and made donations. A

special thanks to all the booths that were there to offer information on special services,Owensboro Photography Club, Owensboro Balloon Twisters, Jay Velotta, BG Rockers andSt. Joe & Pauls cooking team. I cannot even attempt to name and thank everyone butplease know if you were involved in anyway, we so appreciate it. At last a huge thanksfor the DSAW committee: Brenda Walker, Harry Walker, Stephanie Smith, Les Smith,Jonathon Estes, Renea Estes, Kim Hartman, Deanna Honeycutt, Deanna Isbill, Kim Hart-man, Lori Marksberry, Beth Ewing and Brandi Frazier. I have put in a few pictures. Besure and attend the Christmas Party for a slide show of DSAW 2011.


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DSAW 2011 continued...


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In Our Community...

Laura Whitfill is a winner of the Growing Awareness Art

Contest. This contest celebrates artists with Down syn-

drome. Lauras artwork, Stained Glass Window, along

with the artwork of 4 other winners is featured on note

cards available for purchase at

www.downsyndromefootprint.org . As a winner Laura

received a $25 gift certificate to be used at the online

store. Laura loves to draw and make designs. She does

this everyday and dreams of being an artist.-so for Laura

her dream has been fulfilled. Thanks to GRADSA for mak-

ing us aware of this contest. We read about it in thenewsletter. Laura is the 16 year old daughter of Ron and

Jamesetta Whitfill of Hawesville, KY.


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In Our Community...


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Less Stress for the Holidays...NDSC Communicator November 2011Ahh...the holidays. Relaxing with family and friends. Great food and fellowship. Shopping for just theright gifts...Or..."AHH! The Holidays! How long are these relatives staying? Stop eating so much! I've

never seen so much food in my life! Are you kidding me? I'm not going to the mall!" The holiday season

can provide some of the most joyful times in our lives, but they also undoubtedly can cause loads ofstress. Is there anything we can do to make them less stressful? Planning and perspective. Here aresome ideas:

1. Lower your expectations. No one really has a holiday that looks like a magazine photo shoot, with

the possible exception of Martha Stewart. (And we suspect there's a little stress happening in that house,too.)

2. Look at your calendar with the rest of your family and make realistic plans for shopping, baking

and traveling. Say no to requests or events that put you over the edge.

3. Be flexible. How often do things really go according to plan? Be ready to go with the flow.

4. Ask for help. You can't be all things to all people all the time.

5. Try to get enough sleep and exercise. It's good for you mentally and physically.

And how about for your family member with Down syndrome?

1.Prepare for new places and new people by talking about where you'll be going and who you'll be

seeing. Showing pictures will be helpful, too. "We're driving a long, long way to Aunt Peg's house. This

is a picture of her dog named Molly. You'll be sleeping in a sleeping bag in your cousin Emma's room."

2. Expect a disruption to normal routines, but try to keep to as many routines as practical. Espe-

cially when it comes to getting enough sleep and making healthy food choices. Too much sugar and toolittle sleep makes everyone miserable. (But, it is a holiday, so it's okay to ease up a little, right?)

3. You know your child best - what can trigger a behavior problem or cause anxiety - so do your best

to plan ahead to avoid those triggers.

4. If you'll be seeing people who are unfamiliar with your child, educate them ahead of time, too.

Let them know if there are safety concerns, sensory issues, or food allergies that could present a prob-

lem during a visit.

5. Plan for alternate activities and enlist help from family and friends. If you know all of your rela-tives will want to go bowling, but the bowling alley is just too loud and chaotic, plan another activity foryour child with Down syndrome. (A walk to the park with Uncle Jim? Hot chocolate at the coffee shop

with Grandma?)

Planning ahead and preparing for both the expected and unexpected really does help. Enjoy these next

few weeks as we wind down 2011. Take lots of photos and help create fun memories for your whole

family!

Volunteering is so important...The importance of volunteering cannot be underestimated. GRADSA relies you to become

involved with the organization in a variety of ways to increase its ability to better meetthe needs of our community. Whether serving on one of the many GRADSA committees,helping with an event, sharing your expertise with others or supporting another familywho could benefit from your knowledge and experience, volunteers keep GRADSA vital and

dynamic. Please consider getting involved with GRADSA the rewards are immeasurable!

For more information on getting involved, contact Carla at 270-925-0195 [email protected]


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OctoberOctoberOctoberOctober NovemberNovemberNovemberNovember

14 Blake Lamb 4 Jonathon Whittaker

19 Lily Gray 8 Ana Lilia Desillo

28 Kenneth Douglas 10 Matthew Huston28 Kenneth James 10 Elijah Hale

DecemberDecemberDecemberDecember 18 Ben Pace

6 Christina Martinez 25 Joey McAtee

8 Tammy Sears 30 Steven Ballard

15 Lukas Mahoney

16 Alan Wood

17 Zeb Wells

17 Clayton Eddings

26 Paxton Hocker

27 Hannah Hardesty

28 Ann Switzer

28 Mark Vollman

30 Max Engineer

Fazolis Birthday Club:Fazolis Birthday Club:Fazolis Birthday Club:Fazolis Birthday Club:

Fazolis, 5060 Frederica St., is treating individuals with Down Syndrome to a free meal tocelebrate their special day. Children ages 12 and under can choose a kids meal while teensand adults have their choice of a small spaghetti with marinara or meat sauce. To receiveyou free meal, show this column to the cashier during the month of your Birthday.

Happy Birthday!!!

This is the day which theThis is the day which theThis is the day which theThis is the day which the

Lord has made:Lord has made:Lord has made:Lord has made:Let us rejoice and beLet us rejoice and beLet us rejoice and beLet us rejoice and be

glad in it.glad in it.glad in it.glad in it.

Psalm 118:24Psalm 118:24Psalm 118:24Psalm 118:24


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MISSION STATEMENT

GRADSAS mission is to enable families enriched with the Down syndrome connection to share

resources, build friendships and advocate together for the future of individuals with Down syn-

drome.

SERVICES

GRADSA is an affiliate of the National Down Syndrome Society and the National Down Syndrome

Congress. GRADSA is a non-profit 501(c)3 organization that provides its members with a bi-

monthly newsletter, educational workshops, social activities, a website, a parent outreach program

and a hospital outreach program. There are no membership fees to join.

POLICY STATEMENT

GRADSA does not endorse any specific therapy, treatment or educational setting. We provide a

variety of information and viewpoints, however, each family must make an individual choice.

PRINTING OF ARTICLES

GRADSA welcomes articles from parents, professionals and other interested parties. Material for

consideration should be sent to Carla Renfrow at [email protected]. Articles written for Heart-

Stringsmay be reproduced if credit is given to the original author and GRADSA. Permission to

reprint articles not original to HeartStringsshould be acquired from the original source.

GRADSAP. O. Box 2031Owensboro, KY

[email protected]

Brenda Walker, President Carla Renfrow, Executive Director Stephanie Smith, Past Pres.

Phone: 270-316-7219 Phone: 270-925-0195

Email: [email protected] email: [email protected]

Board Members:

Landon Barrowclough Anji Edge Deanna Honeycutt Renea Estes

Tony Hamilton Beth Wimsatt Harry Walker Kim Hartman

Lori Marksberry Deanna Isbill Jonathan Estes

Non-ProfitOrg.

U.S.PostagePaid

Owensboro,KY

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Neswletter Vol 4 - 2011

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