|Down Syndrome/Rare Disorders|
Linda Blevins, Division Director
The MAGIC Touch Winter 1997
Vol. 8 Issue 4, pp. 24-6
|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
Last week Jordan had his quarterly visit to the endocrinologist. Jordan had grown at a wonderful rate of 1 1/8 inches. This new growth has bumped Jordan from the 15th percentile to just about the 25th percentile. Jordan's projected height is 5 feet 8 inches. In comparison the average height of a male with Down syndrome is only 5 feet 2 inches.
Much of the discussion at the endocrinologist centered around the feature changes Jordan has experienced. Jordan's forehead has round out, he has developed a nasal bridge which has changed his eyes, and his arms and legs are proportionate. The biggest change has been the growth of his jaw structure. This has given him cheek bones and broadened his palate, alleviating much of the midface discrepancy, which is so common in Down Syndrome. Dr. Schultz said if he met him on the street he would not recognize him as a child with Down syndrome. Thank you Dr. Schultz for a terrific appointment!
MAGIC is experiencing growth and the needs of our membership are changing. Increasingly MAGIC is receiving requests and memberships from families with children with rare disorders. To meet the needs of these families MAGIC will be initiating a Rare Disorder Division.
Reorganization has moved the Down Syndrome division into the newly created Rare Disorder Division and I will be heading the new division. This is in the early stages, but gradually the newsletter will change.
KS writes: Our son Alex was born with Down syndrome with his height just above the 25 percentile on the growth chart. He continued to grow until he was approximately six months old, when his growth slowed. By the time he was nine months, he fell completely off the growth chart.
The use of growth hormone boosted his height into the 10 percentile, which he has maintained over the past couple of years. When we began using growth hormone, we also noticed an increase in his physical strength. Instead of feeling floppy, he felt more sturdy and his body became more defined. His chest lost its small sunken look. We feel that growth hormone has improved Alex's strength and has helped him to grow at a normal rate.
I want to thank you so much for providing the information regarding Dr. Kane's research and findings regarding autism. Although our daughter, Jamie, has Down syndrome and is hypothyroid, she is also autistic so she has not responded well to tradition therapies and treatment for either diagnosis alone. We have had the testing done, which is very inexpensive compared to most metabolic testing, and in fact was ordered without problem by our family doctor. The preliminary results from Carbonbase are in and we await a phone conference with Dr. Kane next week. Already we know we are looking at an anemia problem we were not aware of, but which explains a lot of things. Anyone who has actually lived with an autistic child knows how many roads we are willing to travel to provide relief and to uncover causes. It was nice to have such an inexpensive and informative alternative to try. Thanks for all the good work you do. SM, Florida.
DS and Precocious Puberty
An interesting occurrence has presented itself. Currently I know of two Down syndrome children who have presented with precocious puberty symptoms at the ages of seven and eight. Hormonal testing and bone age x-rays confirmed a state of precocious puberty. Both individuals are currently under treatment for their accelerated development.
Recently SM, a mother of another DS child has called concerned about the development of pubic hair on her daughter. Blood work was drawn last week. Early test results show megoblastic anemia and indices of adrenal exhaustion. Further testing is needed to determine the state of precocious puberty and adrenal functioning. Each of the parents found the support of Kelly Meadows in the Precocious Puberty Division very helpful in preparing for the visit to the endocrinologist.
Research on puberty and hormonal status in children with Down syndrome is limited and contradictory. There are many questions in this area and parental feedback is important. If you know any Down syndrome children experiencing precocious puberty symptoms, please keep me posted.
Teaching Reading To Children With DS
In our society reading skills are paramount in employment opportunities and are a necessary skill for everyday life. I will present a quick over view of some of the research and methods for teaching reading and facilitating speech in children with DS.
Research has shown that children with Down syndrome have great difficulty learning to read. It is estimated that 40% of adolescents with Down syndrome acquire some reading skill and that perhaps 10% learn to read well. Many clinical trials have looked at aspects of reading skills in DS and learning disabled children. The book "Down Syndrome. Living and Learning in the Community" ($17.95) by Nadel and Rosenthal discusses some research which has been done in this area. Researchers Fowler, Doherty and Boynton have looked at phonological awareness, verbal short-term memory and the accuracy and speed of word retrieval in adolescent Down syndrome individuals and relationships to reading abilities. Several other chapters are presented on the topic of DS and reading skills.
Sue Buckley, an English researcher, has conducted clinical trails utilizing flashcards as a method for teaching Down syndrome children to read. The method has even been used successfully with adults. She finds that as reading skills develop, speech skills improve. Susan Buckley's findings have been confirmed by other researchers. Another study conducted with teenagers, showed that the flashcard method improved grammar and syntax. The Connecticut Down Syndrome Congress has graciously sent a copy of a 19 page lecture by Sue Buckley. This lecture and another article by Sue Buckley will be on file at the MAGIC office. Several books and videos by Ms. Buckley are available from Anne Sewall, a distributor. She can be reached at (802) 439-5845.
Speech pathologist Pat Oelwein, like Sue Buckley, has experienced great success in utilizing the flashcard method in teaching children with Down Syndrome to read. Pat Oelwein has published a book "Teaching Reading to Children with Down Syndrome, A Parent's Guide". Mary Jane Garcia, a former secretary of the NDSC used the techniques in this book to teach her teenage son to read.
Another instructional protocol has been developed by the Kotlinski's of Dearborn, Michigan. They developed this program for Marie, their DS child. Their teaching method utilizes a combination of video tape reinforced with a reading booklet and audio tape to teach reading to children with Down syndrome. While this method has not been through clinical trials, parents have reported positive results. The Kotlinski's call their program "Love and Learning" and they can be reached at 313-581-8436.
Loyola College in Maryland leads the pack in speech/language pathology treatment programs for children with DS. Loyola faculty members Libby Kumin, PhD, CCC-SLP and Diane Chapman, MS, CCC-SLP write, "There is a need for comprehensive speech, language and oral-motor intervention. Treatment may include the following areas: oral massage/normalization, sensory integration, feeding/eating, oral-motor exercise, orofacial myology, articulation, phonological processes, fluency, voice, auditory processing, receptive language, expressive language, pragmatics, whole language and literacy." These variety of techniques and therapies are used to address many of the challenges encountered by children with Down syndrome in the areas of feeding, eating and speech production. Two articles addressing these issues will be placed on file at MAGIC.
Diane Chapman, a Loyola faculty member, hosts a hands on workshops for out of state parents. Additionally arrangements can be made to have your child individually evaluated. The parent will then be presented with a set of recommendations and exercises tailored specifically for the child. Diane Chapman can be reached at (410) 617-2508, Loyola College, Baltimore, MD.
To round this out, there is an offering of publications. Communication Skills in Children with Down Syndrome by Libby Kumin offers many insights in speech and language development. The newsletter Communicating Together is a very professional publication that follows the current therapies and research. It offers useful tools for the parent and the professional. They may be reached at: Communicating Together, P.O. Box 6395 Columbia, MD 21045- 6395.
Speech-language pathologist, Suzanne Evans Morris, Ph.D. strongly feels that music is an important aspect in speech development. She writes, "Music can play a very significant role in creating an environment in which both the child and adult are open to learning from each other and from the activities or materials which are presented. Music supports what is being taught and learned. When combined with systematic introduction, careful observation, and responsiveness to the child's non-verbal communication signals, music can assist the process of change." Some of Ms. Morris' philosophies are utilized by the clinics at Loyola. The article Introducing Music into a Learning Environment will be on file at MAGIC. Suzanne Evans Morris can be reached at New Vision (804) 361-2285, Route I, Box 175-S, Farber, Virginia 22938. New Vision now has a web site (http://www.new-vis.com) offering a catalog of product, current research and technical articles and feedback from other professionals in the field.
For your education I have covered some options and support materials that are available for children with speech and language problems and reading issues. Every child has a unique set of issues they are dealing with. As always consult with you local professional.
Poem to Children
This poem was shared by a father on the internet. It was written by Jason Reimund, age 17, for Elijah a new Down syndrome baby. I thought it was a wonderful poem to receive at the birth of a child.
You know, no matter how you look at it, it seems to me that children are the keepers of life. They are the landlords of curiosity. The commanders of everything new. Every dawn cast upon our great rolling hills. Every brushstroke to our masterpieces, Every thread to our quilt, Every word to our sentence. Every thought to our being was created by a child.
When life has lost it's wonder, When life has stopped amazing us. When there are no more questions to interest us, When we have become bored. Children give us a way to start all over again. Children, my friend, are our pathways to everything new.
As research becomes available, I will place it on file at the MAGIC office for your further education. Here are two new articles discussing nutrient status in children with DS and an abstract on transient leukemia.
|Revised: February 21, 1999.|