Down Syndrome with Growth Failure  
Linda Blevins, Division Director
The MAGIC Touch • Fall 1996
Vol. 7, Issue 3, pp. 20-22
  Reprinted with the permission of The MAGIC Foundation
1327 N. Harlem Avenue, Oak Park, IL 60302-1376
1 (800) 3 MAGIC 3
(708) 383-0808 Fax: (708) 383-0899

Convention Success
MAGIC'S 1996 convention was a huge success. What can I say, it was educational and FUN, FUN, FUN. Families traveled in from the west coast and from the east coast and from the deep south. Friday was a day of seminars covering topics from growth hormone deficiencies to family dynamics of having a child with growth and medical disorder. Each of the divisions MuCune Albright, Thyroid Division, Russell Silver Syndrome, Turner's Syndrome, Down Syndrome, Precocious Puberty, Growth Hormone Failure had presenters discussing relevant topics. Each seminar was then followed by a "family networking" sessions. This session allowed parents to discuss their particular situation, share vital information and have open discussions with medical professionals.
The real focus of the convention were the kids. So many wonderful activities were planned for them. My favorite was the karaoke and line dancing night and Jordan danced every dance. Tiffany, you sure can sing and dance! Another night was bingo and Dino sure can call the bingo numbers! All through the convention the kids were receiving prizes and gifts. Of course there was the silent auction with prizes ranging from Six Flag tickets to river boat cruises to Looney tune clothing to autograph pictures of celebrities. It was a fantastic fund raiser.

It was truly a wonderful convention and a celebration of our children. Thank you Jamie Harvey for organizing such a successful event and thank you to all the volunteers, donators and to the corporate sponsors.

Auditory Integrative Training
Recently Jordan underwent a second round of auditor integrative training (AIT). We had always noticed that Jordan was sound sensitive and could hear airplanes, traffic and barking dogs long before any of us could. We noticed that he had great difficulty being in a noisy, crowded rooms and that certain sound frequencies would literally "cut him to the bone" and give him "panic" attacks.

Jordan, when he was one, actually had some speech and language skills but they began to regress as the sound sensitivity became worse. As the sensitivity worsened, Jordan began to eliminated these troubling frequencies from his hearing. An audiogram revealed he had peaks and valleys in his hearing, indicating hearing difficulties or hearing loss. The theory is, if you can't hear it, then you can't say it. Speech practically disappeared and was replaced with growling and grunting and we saw an increase in aggressive behavior.

While researching this problem, I ran across a mother LH, in Texas who had her sound sensitive DS child treated with AIT. She reported that her child had improved speech and fewer negative reactions from sound sensitivities. She gave me the name of the Georgiana Organization (203-454-1221) in Westport, CT. This organization trains and supports AIT practitioners and they provided a list of practitioners. I also talked with the Autism Research Center (619-281-7165) and the Center for Autism (503-643-4121). Sound sensitivity is a common component in autism. Libby Kumin (410-995-0722) at Loyola University in MD is studying AIT and has applied it with some individuals with DS. A recent Down Syndrome News, published by the NDSC 1-800-221-4602 discusses AIT issues.

Eagerly I began telephone interviewing practitioners and following up on their references. Many of the references reported positive experiences with increased language and reduced sound sensitivity. We finally decided on Sheila Frick, OTR, of Madison, Wisconsin. Sheila is trained in sensory integration (SI) and is a member of the American Occupational Therapy Organization and is a sought after lecturer. Sheila co-treats with AIT, SI and occupational therapy.

Of course with any type of treatment there is no guarantee. I was very skeptical; especially since there was only one published study and just a few published case studies. Yet I had a child that sounds were literally driving him crazy and I could find no other treatment options.

We arranged to do AIT and another mother, LB and her DS son Zachary were in the group. Thank goodness we did AIT. During AIT I was surprised to see an improvement in physical skills. Jordan began walking down stairs, alternating feet going up stairs and walking on balance beams. The SI treatment worked to improve his eye focusing. He also began to say a few completely new words and old words began to reappear. He also had a lessening of his sound sensitivity. As the year progressed we saw his vocabulary increase dramatically and the emergence of two word sentences and then three word sentences. His panic attacks became almost none existent. Zachary also had improvements in his language skills. Several others in the group experienced improvements, some slight and some quite dramatic.

Over the year Jordan's language skills improved. Still Jordan experienced language delays, remained left ear dominate and had articulation problems and could not sing or clap in rhythm. He also had disfluency (Dad would be da-da-da-dad) which is a repeating of sounds and his right eye was still not totally focusing or tracking as well as his left eye. Because of this, we opted to do a second round of AIT.

The results were apparent even before the ten days were over. With SI his right eye began focusing and he starter catching balls. His clapping and singing became more in rhythm and his disfluency has lessened. Most. importantly he has began using multiple two word sentences and attempting to carry on conversations. His articulation has only improved slightly.

To be honest with you I have no idea how AIT works I just know it has worked for Jordan. As with all treatments, be sure to discuss them with your physician and therapists. Jordan's doctor and speech therapist agreed he had sound sensitivity issues and both wrote letters of medical necessity for this treatment.


On the day that I was born.
The doctors told my parents that something was wrong.

From inside my crib I could hear my Mom crying.
I didn't understand why, but I was trying.

My Dad looked so sad with that tear in his eye.
I held on to his finger and thought, "Hey, Dad, don't cry."

A man came to see my parents at the hospital today.
He told them if they wanted he could take me away. 1

My Dad got mad and told him to leave.
My Mom got sad and glanced over toward me.

I knew that they loved me.
I knew that they cared.
But I felt for the first time they were both really scared.

My Mom came over to where I was sleeping.
My eyes were closed, but I knew who was speaking.
"You are so special." she said to me.
"Tomorrow we take you home, just wait and see."

Tomorrow came and they took me away.
To a place far, far away.
This is your home, a place to roam.
We hope you'll grow old here and call it you own.

Many years have passed since the day I was born.
I've always felt loved and never ignored.
I thank God for the parents he gave me.
They gave me a chance and never betrayed me.
You have a home and you'll never be alone.
You're our special child born with Down Syndrome.

This poem was written with love by Luanne Taylor for her sister. Lisa, and her niece Lindsey who has Down Syndrome. They own L&L Communications Design Team in Deerfield Beach, FL.

Lisa and Luanne, I love your logo!

From Kentucky
MS from Kentucky has had their child on growth hormone treatment since 1992. They call growth hormone "liquid gold".

Love and Learning
While talking with parents a reading and language program has been highly recommended by two of our parents, AB in Florida and DA in California. Each of these mothers said this program has helped improve their child's articulation and AB states it has helped her daughter's reading.

The Love and Learning program was developed by Joe and Susan Kotlinski for their DS child Marie.

"Love and Learning is an innovative technique for teaching language and reading skills. ...the technique combines the use of special audio tapes, video tapes and books with an easily achievable amount of parental involvement. What makes this method truly unique is the way in which letters/word are clearly presented to help a special needs child focus their attention."
This is an area of great importance. In the book Down Syndrome: Living and Learning in the Community, it states "normally developing children produce their first words between 6 and 14 months, children with Down syndrome begin producing words anytime between 9 months and 7 years, normally developing children put words together into simple sentences somewhere between 14 and 32 months, whereas children with Down syndrome make their first two-word combinations somewhere between 18 months and 8 or even 11 years. These onset measures vary individually from within the normal range to delays that are nothing short of frustrating."(pg. 121). On page 182 it further states the "it is now estimated that a substantial proportion (40%) of adolescents with Down syndrome acquire at least some reading skill". Some where else in the book (sorry, can't find the page) it says only 10% learn to read well. Further information can be obtained at:
Love and Learning
P.O. Box 4088
Dearborn, Michigan 48126-4088
(313) 581-8436
Future Topics
Metabolic testing reveals anomalies in DS metabolism by Dr. Richard Lord.
Growth hormone presentation by Dr. Khalek at Jacksonville DS conference.
Hopefully, input from you!!!!

Personal Stories
There is so much we can learn from our DS children. The need to share our stories is vital to each of us. Please take the time to write any current or past events regarding your DS child and send to MAGIC for our next newsletter. Names are always withheld. We are eager to learn from our individual experiences, yet how are we to know if they are not shared? Next issue is in December. Please submit your stories prior to November. I look forward to hearing from many of you.

  Revised: April 27, 1999.