Early Matters E-Newsletter Matters.pdf · keep your child safe, care providers need to know ALL...
Transcript of Early Matters E-Newsletter Matters.pdf · keep your child safe, care providers need to know ALL...
Early Matters E-Newsletter June 2016
and what to expect
SLEEP STUDY TIPS
What Happens During a Sleep Study?
Sleep studies do not hurt, although occasionally blood work is requested and obtained with a finger
stick. During the test, your child will have EKG (electrocardiograph) patches on the chest (to monitor
heart rate), belts around the chest and belly (to monitor motion), a soft plastic tube (cannula) at the
nose (measure breathing out), an adhesive bandage around the finger or toe (to monitor oxygen in
the blood), a snore sensor (monitor snoring), and small wires placed on the head and taped to the
face (to monitor brain wave activity, chin muscle activity, and eye muscle activity). The preparation
process for your child's sleep study takes about
one hour. A video camera and microphone will
record your child during the sleep study.
In an effort to get the best sleep study possible it
may be necessary for the Respiratory Therapist
or Registered Polysomnographic Technologist to
make adjustments to the belts, wires, sensors, or
cannula throughout the night.
Sleep Clinics are held at two Cincinnati
Children's locations: Liberty Sleep Center and
Main Campus Sleep Center.
Preparing for the Sleep Study
Follow the guidelines below in order to achieve the best possible results from a sleep study for your
child:
One parent/guardian only please: In an effort to obtain a quality study and to help put your
child at ease during the study process we require one parent or guardian to stay overnight.
Normal as possible: Keep your child's schedule as normal as possible for several days before
the study, especially the day of the study.
On the day of the study: do not let your child have food or drinks with caffeine such as coffee,
tea, soft drinks or chocolate.
Your child may have dinner prior to coming to the medical center but only light snacks prior to
the test. If dinner is needed to be ordered after arriving for the sleep study please let the staff be
aware. Please do not leave the premises for food after arriving.
Bed Type and Age: All children 3 years old and younger are required to sleep in an age
appropriate bed.
Pajamas: It is best if your child wears 2 piece pajamas or a button front sleeper. Please NO one
piece zipper sleepers or long gowns.
Favorite Things: If your child has a favorite pillow, blanket, toy, or stuffed animal, you may bring
it to the study.
Avoid products for the Hair: Wash your child's hair before the study and avoid using gel,
sprays, mousse or conditioner. This keeps the small
wires from sticking to the scalp.
Is Your Child on CPAP? If your child is on CPAP
(Continuous Positive Airway Pressure), please bring
mask, headgear and tubing.
Is Your Child on a Ventilator? If your child is on a
ventilator at night, please bring all equipment that you
use every night.
PLEASE BRING ALL MEDICATION THAT YOUR CHILD IS TAKING IN THE ORIGINAL CONTAINER(S). To help keep your child safe, care providers need to know ALL prescriptions, over the counter medications, vitamins, herbal, and nutritional supplements that your child is taking including dosages and frequency.
The above information has been pulled from the Cincinnati Children’s website. Please use this link for further information from CCHMC: http://www.cincinnatichildrens.org/service/s/sleep/services/sleep-laboratory/
Below are tips and tricks from the Down syndrome community that has been
through a sleep study:
THE ROOM IS COLD: Take socks and warm clothes for the parent, an extra warm blanket,
and possibly a fleece.
HOME COMFORTS: Sound machine, stuffed animal, known books, music, pillow, iPad,
popular toys, tooth brush to keep bedtime routine the same, visuals your child uses at home,
weighted blanket (if used)
TIMING: 30 minutes before your child’s typical bedtime is a good time to start the hook -up
process. Once your child is hooked up to the probes then they are not allowed out of the bed.
OTHER ITEMS: iPad charger, cell phone charger (if different), snacks that your child likes
to eat, snacks for the parent, book for parent, headphones or earbuds for parent, portable DVD
player with DVD’s, small flashlight, small rewards, your child’s communication device
FOOD: There is food available at the hospital for your child (both locations), but not the
parent unless you purchase a food voucher ($6). Contact the location you are having the sleep
study at (Main campus or Liberty campus) to ask specifics about food. Try to feed your child
dinner before you arrive at the hospital and have the snacks you brought ready.
CRYING: It very common that our children get upset while the probes are being put on. It is
not painful for the child so don’t give up.
SOCIAL STORY: An example is found here- http://www.massgeneral.org/children/assets/pdf/
down-syndrome-sleep-study-book.pdf
CHILD LIFE SPECIALIST: The child life specialists are nearby
to help create a positive experience. They can bring you toys,
books, games, and distraction tactics. They will also help relieve
anxiety for your child by explaining what will be happening using a
doll for demonstration. If you think a child life specialist will be
helpful, then please ask for them to come see you and your child.
NEXT MORNING: Ask to take home some extra adhesive
removal pads. Your child may take a shower at the hospital or you
can take them home for clean-up.
Jena Wells Early Matters Coordinator
513.761.5400
ext. 207
Spring Social Pictures
Join us at our next social event!
Ice Cream Social
Sunday, July 10
2-4 PM
Sharon Woods Park 4631 E. Kemper Road Cincinnati, OH 45241
Register here
Yoga for Parent and Child (ages 0 - 5)
Thursdays | July 14 - August 18
6:30 - 7:30 PM | DSAGC Hatton Foundation Community Room
$20 fee for 6 weeks
Yoga is great for young children. As their bodies are growing and moving, yoga
helps increase core strength, body awareness, balance, flexibility, and coordina-
tion. We do yoga poses through stories, songs, and games, as well short
breath exercises and relaxation techniques which children are able to use in their
every day lives. This class is beneficial physically and emotionally, and it is a lot
of fun! register
Empowerment Classes
Save the Date
REGISTRATION IS NOW OPEN!
Sign Language Class
iCan Swim Camp
July 11 - 15 | Clippard YMCA | ages 3+
The iCan Shine mission is to provide unique learning opportunities in
recreational activities for people with disabilities. Each person's abilities are
embraced and nurtured to foster an environment where everyone can
SHINE! We are pleased to offer this aquatics program to people with
disabilities and look forward to helping your family member learn to reach
their aquatic goals in and around aquatic environments.
iCan Swim is a weeklong program (Monday through Friday).
Each swimmer attends the same 30 or 60 minute session each day of camp Monday through Friday.
There are 4 - 6 swimmers per session with 1 volunteer assigned to each swimmer (1:1 ratio). Swimmers will not be
allowed in the water without a volunteer.
Trained iCan Swim staff will conduct the camp.
There will be a parent orientation on Sunday, July 10th.
There are spots open!!! Please consider utilizing this amazing opportunity!
Learn more and register
Summer Tutoring June 21 - July 7 | July 19 - Aug 4
Preschool - High School
The DSAGC is initiating a summer enrichment program to offer expanded
learning time for children with Down syndrome led by high quality certified
special education instructors with a ratio of one teacher and one assistant per
four students. The teachers will address the two areas of greatest learning
loss: math and reading.
The DSAGC is committed to creating a high quality, beneficial program for
our families led by hand selected certified special educators. Certified
teachers possess the skills and experience to adapt curriculum to meet
students' needs, modify individual lessons, create picture schedules to keep
students focused and differentiate instruction so that children can benefit
from instruction via multiple learning channels. We strive to create a brighter
future for people with Down syndrome!
There are still spots open!! Learn more and register
Opportunity
Would you like to share your experience in a booklet we are putting together this year?
We are looking for stories from people with disabilities and their Moms, Dads, Sisters,
Brothers, & Grandparents!
Please consider one of the questions below. Each submission should be 250 words or less
and subjected to editing for final print.
We would love if you can attach a picture or drawing along with your story too!
Pictures should all be high resolution.
Booklets will distributed to local families in our community.
Any questions, please email Janet Seide at [email protected]
Don’t know where to begin-please consider one of the following:
What advice would you give to families touched by DD that are just beginning their journey?
Tell us about a moment in time.…
What would you say to a family so they do not feel alone? What advice did you receive that helped you?
• What were some of your initial fears after your child’s di-agnosis? How has that changed?
• What have you learned about yourself, or your child, that has surprised you?
All submissions should be emailed to [email protected] by 7/11/16
Thank you in advance for considering this opportunity to share
your story to help others!
Community Groups A Community Group is designed to create opportunities for families that have children with Down
syndrome to network and share common interests, concerns, challenges and information. They do
this through community events, informational meetings, Facebook webpages or playgroups.
AREA SPECIFIC GROUPS
B & W Group
Serving families in Butler and Warren counties
BACH Group
Serving families in Brown, Adams, Clinton, Highland and surrounding
counties
Eastside Group
Serving families in the Cincinnati Eastside area and downtown Cincinnati
KIDS Group
“Kentuckian’s Interested in Down Syndrome” serves families in Northern
Kentucky
Westside Group
Serving families in the Cincinnati Westside area and downtown Cincinnati
SPECIAL INTEREST GROUPS
African American Family Network
Serving families by providing information, support and networking
D.A.D.S Group
Discussion and networking on the aspects of being the father of a child with
Down syndrome
Hispanic Family Group
Social and educational opportunities for Spanish
speaking families
513.490.2834 Marina
DSAGC Teen Group
Serving teens ages 13 - 18 through social opportunities
and networking for parents
Grandparents Group
Networking, sharing and social opportunities for
grandparents of all ages!
COMMUNITY GROUPS COORDINATOR
Amy Iten | 513.761.5400 | [email protected]
BIRTH YEAR GROUPS serving families of children with Down
syndrome born in specific years
2011
(Extra) Ordinary Friends
2012
12T21 Group
2013
T21QTs
(aka T21 Cuties!)
2014
T21QTs - ‘14
(aka T21 Cuties!)
2015
Homies With Extra
Chromies
2016
June Calendar
Sunday Monday Tuesday Wednesday Thursday Friday Saturday
18
Buddy Up
Tennis (ages 5
& up)
19 20
BY 2012 - MNO
21
Summer Tutor-
ing
Adventures
with Friends
(ages 4 - 7)
22
Westside -
Moms' Night
Out
23
Summer Tutor-
ing
24
25
Buddy Walk
Team Fund-
raiser - Driving
for Down Syn-
drome Golf
Outing
26
Westside -
Clippard
Park Family
Outing
27
28
Summer Tutor-
ing
Adventures
with Friends
(ages 4 - 7)
29
30
Summer Tutor-
ing
July Calendar Sunday Monday Tuesday Wednesday Thursday Friday Saturday
1 2
3 4 5
Summer Tutor-
ing
Adventures
with Friends
(ages 4 - 7)
6
Butler/Warren
- Family Event
7
Summer Tutor-
ing
8 9
10
Early Matters
Ice Cream
Social (ages 0
- 5)
11
iCan Swim
Camp
12
iCan Swim
Camp
Adventures with
Friends (ages 4 -
7)
13
iCan Swim
Camp
14
iCan Swim
Camp
Yoga for Parent
and Child (ages
0 - 5)
15
iCan Swim
Camp
16
17 18 19
Summer Tutor-
ing
Adventures
with Friends
(ages 4 - 7)
20 21
Summer Tutor-
ing
Yoga for Parent
and Child (ages
0 - 5)
22 23
Buddy Walk
Night at FC
Cincinnati
K.I.D.S. - Fami-
ly Picnic
24
K.I.D.S. -
Family Picnic
(b)
25 26
Summer Tutor-
ing
27 28
Summer Tutor-
ing
Yoga for Parent
and Child (ages
0 - 5)
29 30
31
Butler/Warren - Ladies
Night Out