GRADSA HeartStrings - September/October 2009

8/6/2019 GRADSA HeartStrings - September/October 2009

1/9

Congratulations to April and

Shawn Smith. April(GRADSAs current

President) is pregnant. Dueto the pregnancy, April will

be taking a hiatus from herduties here at GRADSA. We

wish her well, and offer

April, Shawn, Darian andEthan a huge GOOD

LUCK!!!

-----------------------------------GRADSA families celebrated

the end of summer at theannual Pool Party, held on

July 31, 2009. Over 80people came out and enjoyed

the food, water andfellowship.

------------------------------------Sibling Saturdays is off to a

great start. Siblings of allages have enjoyed playing

golf, bowling, eating pizzaand just socializing with

other children who have asibling with Down syndrome.

Look for future events and

join us!!!

HeartStrings

Septembe r/October 2Words from our Executive Director

BUDDY WALK

GRADSA Calendar of Events

1

A bi-monthly publication for families and friends

enriched with the Down syndrome connection.

This yearsBuddy Walk

be held onSaturday

October 10 aMoreland Pa

in Owensbo11 am to 1 p

We are usin

FirstGivingagain this ye

help our famraise funds.

www.firstgicom

to set up yochilds page

today!!

GRADSAGRADSAGRADSAGRADSA

Saturday September 26, 2009Annual Holiday World Outing

GRADSA will pay for tickets for

the person with Down syndromeand immediate family membersliving in the home.

This year GRADSA will NOT be

providing lunch, however we willall meet in the shelter area at 1:00

pm. You are welcome to bringcoolers with your lunch, or

purchase your lunch inside thepark and bring it to the shelter.

Splashin Safari will not be open

on this date. The park hours are

9:30 am to 5:30 pm on th

day.

ALL tickets must be

preordered. No ticket salwill be available the day

the event. Tickets are

available for $24.45 forfriends, and other family

members. These must bprepaid.

RSVP to Anji Edge at 27

281-0093 [email protected] no late

than Thursday Septembe

10th

if you plan to attend

Friday Se ptember 18, 2009

PIE AUCTIO NThe Lions Clubs of Daviess

County are teaming up andhosting a chili supper/pie auctionto benefit GRADSA. All

proceeds from this night will godirectly to GRADSA. We need

YOUR help!We need:

Volunteers to help at the auctionCakes, pies, desserts to be donated

for the auctionTell your friends and family to

come out and enjoy an evening offood and fun!

The auction will be held at theDaviess County Fairgrounds on

Highway 54 in Philpot.

Dinner is served at 5:00 pm.The auction begins at 6:00 pm.

Bring the kids, grandparents,

friends and neighbors!

The meal will consist of chili,hotdogs and drinks ($3 per

person).

This event will be held in themain building at the Fairgrounds,

so rain or shine, well see youthere!!

GRADSA is experiencing a

baby boom! We havewelcomed four new families

into GRADSA within thepast few months. As a result,

we are expanding our newparent outreach program to

include these new families.

The Parent Outreachcommittee is working on a

social event for parents ofchildren ages birth to 5. It is

our hope that our seasonedparents can reach out, and

offer support and guidance toour newest members. Be on

the lookout for the details ofthis fun event in the next few

months!------------------------------------

GRADSA would like to offerparents and educators the

opportunity to come togetheron a regular basis and discuss

IEP goals, strategies, problemareas and more.

This group would be modeled

after Wrights Laws

Educational AdvocacyGroups and would use the

text from Wrights Lawentitled From Emotions to

Advocacy. We are lookingfor 2-3 dedicated volunteers

to help mediate the

discussions and help interpretthe text. If you are interestedin joining GRADSA in this

outreach, contact Anji Edgeat 270-281-0093 or

[email protected]

GRADSA still has a fewKroger Gift Cards left for

sale. If you would like tojoin GRADSA in raising

funds every time you shop atKroger, contact Anji Edge at

270-281-0093 or

[email protected]


2/9

GRADSA is participating ina recycling program for ink

jet/laser jet cartridges. Forevery cartridge we submit,

we receive a cash awardtoward our purchases at

Staples. This year alone, our

ink jet fund has paid formailings, copying fees and

more. Please, join us in our

efforts!

You can bring yourcartridges to any GRADSA

event.

We need a minimum of TENcartridges per month, but we

also have room to store extracartridges for future months.

Thank you for supporting

GRADSA in this way!

GRADSAs Parent OutreachCommittee is working hard

to schedule upcomingmeetings and events that will

address the needs of all ofour members.

Several GRADSA familieshad the opportunity to hearLinda Beckman, sister and

caregiver of an adult withDS, speak on the need for

improved housing optionsfor the adult with DS.

Several needs were

identified through thispresentation and GRADSA

is working hard to help meetthose needs.

Look for information in

upcoming months onpresentations that deal with

waiver services, assistedliving options and more.

Member Assistance Program

2

GRADSA NEWS

GRADSA is anticipating

kicking off a new series ofmeetings designed to meet

the needs of di fferentmember groups.

Look for more information

on upcoming, monthlyevents.

At GRADSA, we strive to

meet the needs of ourmember families across the

lifespan. If you have ideasor suggestions for meetings,

please contact any boardmember, or Anji Edge at

270-281-0093 [email protected]

We look forward to meeting

on a monthly basis andwelcome the opportunity to

get to know each of you.

GRADSA would like to offer the opportunity for our member families to reach out and help one another. Supporting others, receivingsupport and the friendships that GRADSA has helped form is one of the greatest benefits of membership in GRADSA. Through this

program, we are offering you the opportunity to ask questions pertinent to your child, and receive help and advice from experiencedparents.

The way the program will work is:

Submit your question or need to Anji Edge at [email protected] or 270-281-0093

In each edition of HeartStrings you will see the list of questions and needs

If you have advice to offer, suggestions or recommendations for a need listed, contact Anji Edge and she will put you in contact with

the family who submitted the question/need

Advice and suggestions will also be published in HeartStrings, for the benefit o f all members

Some other ideas for this program include requests for finding after school care, used clothing or toy exchange and anything else thatour families would find helpful

Again, contact Anji Edge at [email protected] or 270-281-0093 with your questions, needs or suggestions and advice.


3/9

FIVE THINGS TEACHERS NEED TO KNOW

4

2009UPCOMING EVENTS-----------------------------

Pie Auction/ChiliDinner

Friday September 185:00 pm

Daviess CountyFairgrounds

Dinner = $3 per person-----------------------------

HOLIDAY WORLDSaturday September 26

RSVP prior to Sept. 10GRADSA will pay for

admission for theperson with DS and

their immediate familymembers living in the

same home.GRADSA will not

provide lunch. Meet inthe picnic shelter at

1:00 to eat with thegroup.

-----------------------------BUDDY WALK

Saturday Oct. 10th

Moreland Park

Owensboro, KY-----------------------------

Halloween PartySaturday October 24

3:00 pm

Dream Riders(old Cowboys location)

Parents, siblings and

children with DS ages12 and under

-----------------------------Halloween Dance

Saturday October 246:00 pm to 8:00 pm

Dream Riders(old Cowboys location)

Dinner will be served a5:00 pm.

Parents, siblings andchildren and adults with

DS of any ages-----------------------------

Christmas PartyDate and time TBA

-----------------------------

Fazoli s Birthday Club - Fazolis, 5060Frederica Street, i s treating individuals w ithDown syndrome to a free meal to celebrate

their bi rthday.

Children ages 12 & under can choose a kidsmeal wh ile teens & adults have their choiceof a small spaghetti with marinara or meat

sauce.

To receive your free meal, show this column

to the cashier during the month of yourbirthday.

Trevor Brown 9/27/89Kenneth Douglas 10/28/08Kelsey Dueker 9/11/93David Fogle 9/10/70Lilly Gray 10/19/01Mitchell Hensley 9/4/01Ruby Hidalgo 9/20/06Denise Howard 9/23/61Tatum Parker 9/1/99Raven Paulson 9/13/96Isaac David Ramsey 9/9/01Jeff Rhinerson 9/2/78Paige Roberts 9/21/02Eli Rose 9/18/02Alyssa Toerne 9/18/94

Kaleb Warman 9/16/89

1. Please think carefully before hugging my child. Not every adult (s)he meets will be safe andfriendly, and (s)he needs to learn boundaries and age-appropriate ways to interact.

2. It's okay to let my child's classmates know about Down syndrome as long as it is done in apositive way; I'd be happy to help prepare a program.

3. Teaching strategies that have proven success ful for children with Down syndrome will helpmy child learn better and make him/her easier for you to deal with.

4. My child is an individual, not a diagnosis -- please be alert and receptive to the things thatmake him/ her unique and special. Ask me and Il l tell you.

5. Please keep the lines of communication open between our home and the school. My childneeds all the adults in his/her life working together.


4/9

Eight year old Isaac Ramsey, of Madisonville,is in training for the Special OlympicsEquestrian Events. The event is being held in

Lexington, in October.

Here Isaac is working with his instructors,preparing for competition.

GRADSA says GOOD LUCK ISAAC!!!!

Six year old Luke Stone, of Owensboro, vacationed with his family this summer. Luke continues to struggle with heart and lungproblems and will be undergoing testing in September. Lukes parents ask that we remember him in our thoughts and prayers.

Looks like he had a great vacation!!!

Caleb Morgan Francis was born on6/28/09 at 35 weeks. Caleb weighedin at 5 lbs. 5 oz. and was 19 inches

long.

Proud parents are Arnetta andFrancis.

Welcome Francis family!!


5/9

Web address:http://www.sciencedaily.com/releases/2009/08/

090815100837.htm

Obstructive Sleep Apnea Is Prevalent In Adults WithDown Syndrome

ScienceDaily (Aug. 17, 2009) A study in the Aug. 15 issue of theJournal of Clinical Sleep Medicine shows that adults with

Down syndrome also frequently suffer from obstructive sleep apnea (OSA). However, complications of untreated OSA such ascardiovascular disease, daytime sleepiness and impaired cognitive functioning overlap with the manifestations of Down syndrome;

therefore, OSA may not be detected.

Results indicate that 94 percent of subjects with Down syndrome had OSA; 88 percent had at least moderate OSA with an apnea-

hypopnea index (AHI) of more than 15 breathing pauses per hour of sleep; and 69 percent had severe OSA with an AHI of morethan 30. Twelve of the 16 subjects with Down syndrome were obese, and there was a significant correl ation between body mass

index (BMI) and AHI. Total sleep time in subjects with Down syndrome (307 minutes) was more than an hour less than incontrols (380 minutes). Despite the severity of OSA in the study group, medical evaluation had been sought in only one case.

According to senior author Carole Marcus, M.B.B.Ch., professor of pediatrics at the University of Pennsylvania and director o fthe Children's Hospital of Philadelphia Sleep Center, it is well known that children with Down syndrome are at risk for OSA, with

a prevalence of 30 to 55 percent, and adults with Down syndrome have even more predisposing factors for OSA than children, asthey still have the craniofacial anomalies and are more likely to be obese or hypothyroid.

"Patients with Down syndrome have a great deal of risk factors for OSA (based on their narrow midface, large tongue, floppymuscle tone, tendency towards being overweight, and thyroid disease)," said Marcus. "However, the fact that almost all of the

subjects studied had OSA was a much higher prevalence than we expect ed. It was surprising how severe the illness was, and howthe OSA was unsuspected by their caregivers."

The cohort study included information from 16 adults with DS who underwent evaluation for sleep disordered breathing. Subjectswere recruited from the local association of Retarded Citizens (ARC), parents of Down Syndrome (PODS) group meetings and the

Kennedy Krieger Down Syndrome Clinic. Eight subjects were recruited from the clinic while the other eight responded to fliers

and letters. Participants ranged between 19 and 56 years of age with a median age of 33. Half o f the subjects were female (four ofwhom were postmenopausal); 15 were Caucasian, and one was Asian.

Polysomnographic results were matched and compared to a retrospective control sample of 48 adult patients who underwent

standard diagnostic nocturnal polysomnography at the John Hopkins University adult Sleep Center for evaluation of suspectedOSA. Controls had less severe sleep apnea with a median AHI of 16; 54 percent had an AHI of more than15; 38 percent had an

AHI of more than 30.

The authors suggest that obesity, a common and potentially treatable problem in Down syndrome, appears to play an important

role in the pathophysiology of OSA in this population.

According to the American Academy of Sleep Medicine, OSA is a sleep-related breathing disorder that involves a decrease or

complete halt in airflow despite an ongoing effort to breathe. It occurs when the muscles relax during sleep, causing soft tissue in

the back of the throat to collapse and block the upper airway. This leads to partial reductions (hypopneas) and complete pauses(apneas) in breathing that can produce abrupt reductions in blood oxygen saturation. Most people with OSA snore loudly and

frequently, and they often experience excessive daytime sleepiness.

7

Anjis note: If your child or adult with Down syndrome has not been testedfor sleep apnea, ask your doctor for a referral to an appropriate sleep lab.

Currently, five GRADSA members are being evaluated and/or treated for thisdisease. There are often no warning signs to this very serious condition.


6/9

Buddy Walkuddy WalkBuddy Walkuddy Walk 2009 honors our Hometown Heroes2009 honors our Hometown Heroes2009 honors our Hometown Heroes2009 honors our Hometown Heroes

Army, Navy, Air Force, Marines,Police, and Firemen. We honor

them and recognize that theirsacrifices, talents, and dedicat ion

keep us safe.GRADSA believes that not all

wars are fought by soldiers..

Our children and adults with Downsyndrome fight every day.

Medically, physically, socially, andeducat ionally..our ch ildren andadults have fought to secure theirplace in our communities. And

GRADSA honors their never-give-up att itude this year during our

Buddy W alk 2009.

On Saturday October 10, 2009 atMoreland Park in Owensboro,

GRADSA will pay tribute to ourheroes.

Each year there are over 280 walksheld worldwide. These walks

provide communities theopportunity to celebrate

individuals with Down syndrome,and their very real

accomplishments within the

communities.

GRADSA encourages each of itsmember families to form a team,

and come out and walk with us onthis day. Every person who

attends the Buddy Walk will comeaway with a greater understanding

and appreciation for Down

syndrome.

SATURDAY OCTOBER 10, 2009MORELAND PARK

11:00 am 1:00 pm

Dont forget to preorder, and pick up, your Buddy Walk

shirts!!!


7/9

Buddy Walk 2009

Hometown Heroes

Saturday October 10, 200911 am to 1 pm

Moreland Park, Owensboro, KY

T-shirt Registration:AllGRADSA member families will receive FREE t-shirts this year. This includes the person with Down syndrome, and all immediate fa

members, residing in the same home. Please return your order form no later than September 18, 2009. You may also order your shirts email to [email protected]

Name: Phone Number: Size(Please indicate child or adult)

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T-shirts are available for persons outside the immediate families for a donation of $10 per shirt.Please include payment, checks made payable to GRADSA, with these orders.

Name: Phone Number: Size(Please indicate child or adult)

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PRE-ORDER ONLY

Hooded, sand colored pullover

sweatshirts. Adult sizes only S-XL.

$25 prepaid by September 18, 2009.

These will be available for pickup with

the Buddy Walk shirts.

Preordered tshirts and sweatshirts wi

be available for pickup onTHURSDAY OCTOBER 1, 2009

5:30 pm to 7:30 pm

Old National BankHwy 54 location

Front conferen ce room

Pick yours up early so you can wear

them on the day of the Buddy Walk!


8/9

GRADSA and Daviess County Lions ClubsPIE AUCTION and CHILI DINNER

Friday September 18, 20095:00 pm

Daviess County FairgroundsHighway 54, Philpot, KY

We need YOUR help:

Volunteers to help with the auction

Pies, decorated cakes and baked goods

Dinner will be served starting at 5:00 pmChili, hotdogs and drinks will be available ($3 per person)

The auction will begin at 6:00 pm

Invite your family, friends and neighbors to come out and enjoy an evening of goodfood and fun!!

If you can donate an item for the auction and need someone to pick it up and deliver it tothe auction, contact Deanna Isbill at 270-233-5611. Deanna will be available to p ick up

your items prior to the auction.

All proceeds from the auction and dinner will benefit the Green River Area DownSyndrome Association.

For more information, contact Anji Edge at 270-281-0093 or [email protected]


9/9

GRADSAP. O. Box 2031

Owensboro, KY [email protected]

MISSION STATEMENT

GRADSAS miss ion is to enable famil ies enriched with the Down syndrome connection t o shareresources, build friendships and advocate together for the future of individuals with Down syndrome.

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

Cong ress. GRADSA i s 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 hospitaloutreach program. There are no membership fees to join .

POLICY STATEMENTGRADSA does not endorse any speci fic therapy, treatment o r educational setting . We provide a variety of

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

PRINTING OF ARTICLESGRADSA welcomes articles from parents , professionals and other interested parties . Material for

consideration should be sent to Anji Edge at [email protected]. Articl es written forHeartStrings may bereproduced if credi t is given t o the original author and GRADSA. Permission to reprint articles n ot

original toHeartStrings should be acquired from the original source.

April Smith, President Stephanie Smit h, President-Elect Anji Edge, Ex. Directo r

Phone: 270-929-3824 Phone: 270-929-4724 Phone: 270-281-0093email: [email protected] email: [email protected] email: [email protected]

Di recto rs: Michele Cecil , Legal Adviso r Landon Barrowclough Megan GreenwellTony Hamilton Deanna Isbill Dwight Beyke Buddy Walk CoordinatorLori Marksberry Jamie Mul lens [email protected]

Paul Puckett Brenda WalkerBeth Wimsatt Tony Wimsatt

Non-Profit Org.U.S. Postage PaidOwensboro, KY

Permit No. 120

Documents

GRADSA HeartStrings - September/October 2009