I  think this year more than ever the holidays have seemed a bit more special and meaningful.  What with all that has gone on over the last several months we all are feeling the need to associate to family, friends and associates in a little different way.   Coming to grips that life is granted and not guaranteed causes us to reflect on who we are and how we are perceived by those around us.  My reflections of myself indicate that I often fail to recognize opportunities to be more humble and service minded.  

As parents, family members, friends or associates of people with Down syndrome we have been awarded the opportunity to be more humble.  Taking time to accommodate the needs of these individuals is not worthy of us to be considered service minded, but more accurately a parental or social responsibility.  Having accepted the challenges, trials, shortcomings and unrecognized dreams are we able to see the wonderfulness of what can be experienced by our association with all individuals with disabilities.   

Only through connecting with each other and sharing experiences have I been able to recognize the wonderfulness of it all.  My heartfelt thanks go out to all that support our community in ways that encourage our families and children.   Only as we accept the parental and social responsibilities of our families and friends can we be granted the opportunity to realize life’s true happiness that is brought about as we are transformed into being more service minded. 

As you may have the opportunity to reflect on your opportunities to be more service minded and desire to participate more directly in the planning and coordinating the operating activities of our organization please let me know.   We continue to need help in all areas of the organization and welcome all levels of volunteers and assistance. 

Let’s not let it take one of life’s bricks to hit us before we recognize our obligations as the following story describes.
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Life’s Bricks                 

About ten years ago, a young and very successful executive named Josh was traveling down a Chicago neighborhood street. He was going a bit too fast in his sleek, black, 12 cylinder Jaguar XKE, which was only two months old.

He was watching for kids darting out from between parked cars and slowed down when he thought he saw something. As his car passed, no child darted out, but a brick sailed out and-WHUMP! — it smashed into the Jag’s shiny black side door! SCREECH...!!!! Brakes slammed! Gears ground into reverse, and tires madly spun the Jaguar back to the spot from where the brick had been thrown.

Josh jumped out of the car, grabbed the kid and pushed him up against a parked car. He shouted at the kid, “What was that all about and who are you? Just what the heck are you doing?!” Building up a head of steam, he went on. “That’s my new Jag, that brick you threw is gonna cost you a lot of money. Why did you throw it?”

”Please, mister, please...I’m sorry! I didn’t know what else to do!” Pleaded the youngster. “I threw the brick because no one else would stop!”  Tears were dripping down the boy’s chin as he pointed around the parked car. “It’s my brother, mister,” he said. “He rolled off the curb and fell out of his wheelchair and I can’t lift him up.” Sobbing, the boy asked the executive, “Would you please help me get him back into his wheelchair? He’s hurt and he’s too heavy for me.”

Moved beyond words, the young executive tried desperately to swallow the rapidly swelling lump in his throat. Straining, he lifted the young man back into the wheelchair and took out his handkerchief and wiped the scrapes and cuts, checking to see that everything was going to be OK. He then watched the younger brother push him down the sidewalk toward their home.

It was a long walk back to the sleek, black, shining, 12 cylinder Jaguar XKE-a long and slow walk. Josh never did fix the side door of his Jaguar. He kept the dent to remind him not to go through life so fast that someone has to throw a brick at him to get his attention. Some bricks are softer than others. Feel for the bricks of life coming at you.
                               

NEXT MEETING                   Top of Page
January 17th                
Down Syndrome Video Series

October Recap                          Top of Page     
We had no formal meeting in October but many of our members participated in the Buddy walk in OKC.  Also, members from many outlying areas got articles in their local papers regarding the calendar and Down syndrome Awareness Month.  What a great group we have.  When members are active we reach so many people.  The effect is a more educated and understanding world for all of our kids.  Thank you all for helping us get the word (the accurate word!) out about Down syndrome.

November Recap                   Top of Page
TherapyWorks was our speaker in November.  Therapists discussed both gross and fine motor concerns for children with Down syndrome.  TherapyWorks offers a wide range of services.  They are also a sponsor of our 2002 calendar.  Thanks TherapyWorks for supporting our kids and our organization!

2002 Calendar Update              Top of Page
A big thanks to everyone for sending in their calendar money.  The calendars are selling fast.  If you need calendars please contact an officer.  If you need to turn in money please send it to the PO Box listed on the back of every calendar.  The calendars continue to be one of our most successful projects.

2003 Calendar Update                Top of Page
Rebecca Reifsteck , our new calendar coordinator and her committee have already begun photo shoots for the 2003 calendar.  She is still accepting profiles as some shots will not happen until next year.  IF you need a profile form or would like more info please call Rebecca at (918)683-919 (Muskogee).

Research                  Top of Page
 New medication used for an investigational purpose to study possible benefits in young adults with Down syndrome: A recently approved medication for patients with Alzheimer’s Disease is being studied for possible benefits in improving cognitive and global functioning in young adults with Down Syndrome. This medication is widely accepted as the drug of choice for improving symptoms of Alzheimer’s disease. It is now being studied for effectiveness and safety in persons with Down Syndrome who may not yet exhibit any cognitive deficits but who may be susceptible in the future.
Who: Young males and females with Down syndrome aged 18 to 35.  Each participant must have a reliable caregiver who has contact with them daily, and can accompany them to each of the 4 visits.

What: This is a 3 month, double-blind clinical trial using one 5 mg tablet daily of the study drug, or its matching placebo, for 6 weeks followed by 10 mg daily for the next 6 weeks.  Those who complete the trial are eligible for an additional 3 month open-label extension of the study drug.  All study-related visits and medication are free of charge.

Where: Clinical Pharmaceuticals Trials, Inc. is located in the St. John’s Doctors Building, 1705 E. 19th St. Suite 406, Tulsa, OK 74104.  Call 743-4374 and ask for the study coordinator, Mary Donavan, or Dr. Ralph Richter.

  
Helping Babies with Down Syndrome Develop Speech & Language           Top of Page     
By Libby Kumin, Ph. D., CCC-SLP 
reprint from a pamphlet

Welcome to the great adventure of helping your baby learn to speak.  It is exciting to get to know your baby and to watch them learn about their world.  While your newborn cannot talk to you, they can communicate with you through cries, smiles, gestures, sound and body language.  Your baby wants to communicate with you and they begin communicating right from birth.  When your baby cries, he is often sending a message that he wants attention.  When your baby smiles and looks at you, he is sending you a message that he is happy and content, and maybe that he wants to play with you or be held.  The way that you react to these messages can foster further communication.  If you respond by coming to the baby and taking care of their needs, the baby will gradually become aware that making noises and sounds affects the environment.  You are the most important person in your child’s life, and you will be instrumental in helping your baby learn language.

 There are many things that we can do to help children move along the road to speech.  Speech involves coordinating breathing, voice, and rapid and precise movements of the lips, tongue, palate and jaw.  We use the same structures and muscles for speech that we also use for breathing, eating, drinking, blowing bubbles, and making clicking, popping, and “throwing a kiss” sounds.  Through feeding and play, we can begin to work early on some of the same skills and movements that your child will need to speak.  Here is what you can do to help your infant develop language and speech:

 Infants look all around, taking in the many sights of their new world.  To learn language, infants need to learn 3 visual skills:

 To look at you
 To look at an object together with you                              Top of Page                                      
 To focus on an object and explore it

 You can help your baby learn these skills through play.  Encourage your baby to look at your face by making funny faces and smiling.  

 Hold objects up to your face so that your baby looks right at you, but also hold objects in your hand and look at the object together with your infant.  When you look at an object together, take time to explore it. Use sound effects and look interested in the toy.  Touch the toy, smell it look at it and comment on what you see and feel.  That will increase your baby’s interest in exploring.

 In order to listen, your baby needs to have adequate and reliable hearing.  Children with Down syndrome often have fluid in the middle ear and fluctuating hearing loss.  Hearing needs to be checked frequently.  The Healthcare Guidelines for Individuals with Down Syndrome (See Resources) recommend hearing testing by 3 months of age, with follow-up testing every 6 months to 3 years of age and annually throughout childhood.  The pediatrician or otolaryngologist (ear, nose and throat medical specialist) working with the audiologist (specialist in hearing testing and treatment) can develop a treatment program to ensure that your baby’s hearing will be the best hearing possible.

 You can teach your child to pay attention to sound, and to listen longer to sounds.  Musical tapes and CDs and musical toys (such as bells and xylophones) are terrific!  Comment on sounds and look for the source of the sound, e.g., “Do you hear an airplane?  Look, there it is!” Or “I hear a meow. Let’s look for the cat.”  When you come into your child’s room, call his name and wait for him to turn to you.  Sing songs and play with musical toys.  Sway back and forth, dance with your child, and respond to the rhythm.  Many of the speech rhythm concepts can be learned through music.
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You want to help your infant develop the awareness that making noises or using gestures will get results from the environment.  This is known as communicative intent.  How can you help your child develop this skill? Interpret anything that your child does as communicative and respond to it in that way.  So, if your baby kicks her feet, play a game with her toes or put a balloon or even a tambourine near her feet that she can kick.  If she looks over at the front door, ask her if she wants to go outside.  If she makes a “mmm” sound, react to it as if she said “mama” and respond.  Say the word “mama” and point to mama.  If she makes a ”bbb” sound, react as if she said “ball.”  Point to the ball and play with it.  Engage your baby in the play.  Show by your actions how delighted you are at your child’s attempt to communicate.

 Infants respond to touch.  They may find it comforting or they may find it uncomfortable.  Some infants with Down syndrome are hypersensitive to touch, i.e. they don’t like being touched especially around the mouth.  Current thought is that children who are hypersensitive need lots of sensory experience with touch through massage and play.  Use a washcloth and lotion to massage your child’s skin. Rub cotton, velvet, wool, and burlap on your child’s skin during play.  You might use different types of teething toys, which have different surface designs and shapes.  Put together samples of all kinds of textures for your child to explore.  For example, you might hide small toys in a shoebox filled with pasta or rice and help your child find the toys.  You might have pieces of sandpaper, cotton balls, aluminum foil, Velcro, sponge, and velvet in a bag for your child to feel and learn about different textures (be sure to supervise; safety first).  Provide interesting toys for your child to bite, mouth, and explore.  Infant massage specialist and occupational therapists can provide assistance, when needed.

 Feeding uses many of the same muscles and structures that are used for speaking.  Sometimes, infants with Down syndrome have difficulty with feeding because of low muscle tone (floppy muscles) or tongue or lip strength and control.  If your child is  experiencing any difficulty with feeding, ask for help.  Many hospitals and/or early intervention programs have feeding specialists, and a feeding evaluation can be done within the first week after birth, if needed.
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 Your baby makes  sounds during the course of the day.  When your baby makes a sound, such as papapa, imitate that sound and smack your lips together making the p sound.  Follow your child’s lead, and repeat  the sounds or movements (lip puckers and throwing a kiss) that your child makes.  Repeat the same sound that your child made, but then vary it a bit.  For example, sing the p-p-p up and down the scale.  Or say it in a very high voice, then a very low voice; shout the sound then whisper the sound.  Make it fun!  Make a variety of sounds- use lip- popping sounds, click the tongue on the roof of  your mouth, say chachacha to exercise your jaw.

 Oral massage, oral exercises and sound play can help your child learn skills that will be needed for speech.  A speech-language pathologist who specializes in working with muscles of the facial area is known as an oral motor specialist.  A complete oral motor evaluation is recommended before 1 year of age.  The specialist can develop a home treatment exercise program that will help your child prepare for speech.

 Create a language rich environment for your infant.  In the course of the day, label any objects or people in whom your child shows interest.  Make this a part of your daily activities, and follow your child’s lead.  Certain activities lend themselves to stimulating specific vocabulary.  For example, eating lends itself to talking about food and drink, utensils, kitchen items, and verbs (drink, eat, open).  Bathtime lends itself to  talking about body parts, water, soap, shampoo, and hot and cold.  When you go outside, there are trees and flowers, vehicles, stores, community workers, and neighbors.  Use short phrases, so your child will learn the important words in his environment.  Wait and see if your child will try to say words and sounds; take time to give him a chance to participate.  A language evaluation is recommended by or before 1 year of age.                                                Top of Page
                                   
 We learn language by watching and listening to people around us.  Babies learn to make connections between the words they hear and the objects and people thy see.  Most children with Down syndrome make that connection and are ready to use language on or before 1 year of age.  At that age, they can usually understand words, but they are not ready to speak.  But it is important that they continue to learn new language concepts, and that they have a more complex way of letting you know their needs than just crying, smiling, or looking.  Babies and toddlers with Down syndrome have a lot to tell us and they become frustrated if they cannot make their needs known.  Therefore, babies and toddlers need to use a system other than speech as a transitional system to communicate their needs until their muscles, nerves, and coordination skills are ready for speech.

 The research has shown that children with Down syndrome begin to use speech anywhere from 9 months to 8 years of age.  That is a very wide range, but we don’t need to passively wait for speech to happen.  We can provide a pre-speech communication system, and we can help the child learn the skills that they need to be able to speak.  The speech-language pathologist can help by providing information, and teaching you the skills that you need to help your child.  Books and newsletters can provide helpful information for you.  Some suggested readings are included in the resources section.

 The systems that are generally used by children with Down syndrome to communicate until they are ready to use speech are sign language, communication boards, picture exchange communication, and electronic communication systems.  Sign language systems are symbolic hand gestures.  Gestures that resemble actual real life situations, e.g., pointing to the mouth for eating or pretending to drink from a cup for drinking, may be used.  Formal sign language systems such as American Sign Language (ASL) and Signed Exact English (SEE) may be taught. They may be used as a short-term transitional communication system until the child develops speech.  Communication Boards are individually designed communication systems made up of pictures, photographs, line drawings, or words (for older children).  Your child points to the pictures that represent what he is requesting.  Communication boards may be made of tagboard, or may be plastic sheets with pictures tucked into pockets, photo albums with communication pictures, or magnets on the refrigerator with pictures of apples, juice, milk, water and soda.  There are many varieties of communication boards and they are inexpensive and individualized.  Picture exchange systems may also be used where parent and child physically exchange photographs or line drawings as the basis for communication, much like a speaker and listener.  Electronic communication systems can also be used.  They are more costly, but provide an early “voice” for your child.
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 In all of these systems, you will be using speech along with the sign or picture, so your child will continue to hear and learn speech.  Although your child will be communicating through the sign or picture, you will always accompany that sign or picture with speech.  This combination is known as Total Communication.

 The speech-language pathologist can work with you and your child to help you learn the signs, and to choose materials for the communication board or exchange system that will be useful for you and your child.  Why is it important to use a transitional communication system until your child is ready to use speech?  Through the signs and pictures:

Your child will be able to communicate his messages to you.

You will be able to understand the communication,
 lessening frustration for you and your baby.

Your child will be able to continue progressing in language, learning new words and concepts and using them.

You will be able to get to know your child’s personality,
 and sense of humor through his communication.

 School systems have speech-language pathologists who work with children with special needs.  According to the guidelines in IDEA 97 (Individuals with Disabilities Education Act Amendments of 1997), children who are at risk for delays in communication (speech, language, and hearing) are eligible for special education services.  Although the educational plan is supposed to be individualized and designed to meet the needs of the individual child, many school systems do not provide speech and language evaluations and/or treatment until a child with Down syndrome is older (3 years of age) or is speaking.  In countries outside of the United States, early intervention services may or may not include speech and language.                                          Top of Page
                                               
 Speech and language information and help is available.  A speech-language pathologist has professional training in communication development and disorders.  The American-Speech-Language-Hearing Association awards professional credentials when the speech-language pathologist has successfully completed undergraduate and master’s degree accredited programs, completed extensive clinical practicum, and a clinical fellowship year, and passed a national certification examination.  Speech-language pathologists who have been awarded professional credentials will use CCC-SLP after their name.  The local school system is a good starting place to look for speech and language help.

 Thanks to the Aaron Straus and Lillie Straus Foundation for funding to  develop and disseminate this pamphlet; to Loyola College for supporting the Down Syndrome Center for Excellence; to Megan Troop for assistance with the artwork and the layout; and to The Shamrock Companies for assistance with printing.
References & Resources
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Acredolo, L. & Goodwyn, S. (1996). Baby Signs. Chicago, IL: Contemporary Books.

Ayers, A.J. (1980).  Sensory integration and the child. Los Angeles, CA: Western Psychological Publishers.

Cohen, W. et al (1999). Health Care    Guidelines for Individuals with  Down Syndrome.  Down Syndrome Medical Interest Group.  Down Syndrome Quarterly,  4, 1-26.

Kumin, L. (1999). Comprehensive speech and language treatment for infants, toddlers, and children with Down syndrome. In: Hassold, T J & Patterson, D.  (eds.), Down syndrome: A promising future, together. New York, NY: Wiley-Liss. pp. 145-153.

Kumin, L. (1994). Communication skills in children with Down syndrome- A guide for parents. Bethesda, MD: Woodbine House. (1-800-843-7323)

Kumin, L., & Bahr, D.C. (1999). Patterns of feeding, eating, and drinking in young children with Down syndrome with oral motor concerns.  Down Syndrome Quarterly, 4, 1-8.

Kumin, L., Goodman, M.S. & Councill, C. (1991).   Comprehensive communication intervention for infants and toddlers with Down syndrome.  Infant and Toddler Quarterly, 1, 275-296.

Roizen,  N.J. (2001).  Down syndrome in: Batshaw, M. Children with disabilities (5th edition).  Baltimore, MD: Paul H. Brookes Publishers.

Roizen, N.J., Wolfers, C., Blondis, T. (1992). Hearing loss in children with Down syndrome. Pediatrics, 123 S 9-12.

Shott, S.R. (2000).  Down syndrome: Common pediatric ear, nose, and throat problems.  Down Syndrome Quarterly, 5, 1-6.

Stray-Gunderson, K. (1995).  Babies with Down syndrome (2nd edition). Bethesda, MD: Woodbine House.
 

Thank You!             Top of Page         
 
Thank you to the following contributors. We 
couldn’t do it without you:

Dues Paid
Daughn & Karen Baker

Caregivers for November meeting
Hannah Edgmon
Sara Roberson
Jesse Luper

Good News                  Top of Page    
Our own Bradley Bevel won first prize in the Moto Photo Tots Shots Contest.  WE all know how cute he is and now so does the rest of Oklahoma!
 

Newsletter Deadlines      Top of Page               
Share with us your holiday stories, good news and interesting facts. Have your announcements, stories and information to Kim Wofford by January 7th for the February, 2002 newsletter. It is our hope to provide the most current information.

We Need Your Help!                         Top of Page

We would love to have your stories
for the newsletter;
a cute story, school or sport successes,
dates of interesting meetings, or conferences.
If you find it entertaining or interesting,
someone else will too.

So call Kim Wofford at 622-6906 or email her at:  woffordnate@webzone.net
and help us personalize your newsletter.

Come and be a part of this exciting time at DSAT!
 
 

Bad Weather Policy                 Top of Page
DSAT has now established a policy regarding inclement weather.  If there is any question about whether or not we will have a meeting or other event, there are two options available.  Our website, www.DSAT.org, will be updated immediately to show a cancellation and our information line 748-5656 will have a brief message as well.
 

FOR SALE                     Top of Page
DSAT now has many items for sale.  Items will be available at all meetings and parties or by contacting any officer. The items available are:
White polo shirts with DSAT logo $20
White canvas hats with DSAT logo $10
“Far Different Places”  (inspirational music)  CD $10  Tape $6
Songbook $6
Video tape of all calendar  pictures set to music  $10

DSAT CALENDARS! $12

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DISCLAIMER:  The Down Syndrome Association Of Tulsa does not promote, recommend or endorse any service, professional or organization.  Decisions regarding the use of any service, professional or organization are the sole responsibility of the family or guardian. 
 

Co-Vice Presidents:
Daughn & Karen Baker 343-2988
Kim Wofford     (918)  622-6906 

Secretary:
Kelly Johnston

Treasurer:
Kim Wofford (918) 622-6906             Kim's E-mail

Newsletter: 
Kendra Pennington    (918) 889-2954   Kendra's E-mail
Kim Wofford

Calendar Coordinator
Lynette Lambert
(918) 682-6634 

Scholoarship/Library Committee
Jill King 

Party Planner
Kimberly Myers   (918) 266-3214 

New Parent Packets
Karen and Daughn Baker (918) 343-2988

Development Coordinator 
Erin Beach 

Web Master
 E-mail Tracey Wilson