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

JenaW@dsagc.com

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 janet.seide@cchmc.org

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 DDBPFAC@cchmc.org 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 | AmyI@dsagc.com

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