October 1997 Issue

We would like to thank Eric and Loretta Tuegel for hosting our October potluck Lasagna meeting and our guest speaker, Barb Allen, MS, CCC-SLP. Ms. Allen summarized the highlights of the September workshop in Normal, IL, presented by Dr. Libby Kumin. Ms. Allen pointed out the strengths of children with Down syndrome which should be capitalized upon in developing their speech and communication skills. Some ideas for using a child's strength were outlined. Anyone who is interested in exploring any of these areas in more depth should call Victor or Gloria Bishop at (618) 208-1659, who have copies of the parents and professional handouts from the September workshop available for loan.

The Lifetime Caps Discrimination Act has been introduced in both the House of Representatives and the Senate. Many individuals with serious or chronic illnesses are left without insurance when they exceed their lifetime limits. The new legislation would raise the lifetime benefit in health insurance from one million to ten million dollars. Let your Representative know that you support the Lifetime Caps Discrimination Act to assure that individuals with severe and chronic illnesses get the medical insurance that is necessary and appropriate.

STARnet Region IV Workshops
Lekotek Toy Library Training
February 2-6, 1998. Evanston, IL. Contact: National Lekotek Center: 1 (800) 366-PLAY.

Regional Events
The William M. BeDell Achievement and Resource Center 17th Annual Benefit Dance featuring Crystal Image. November 8, 1997, 8:00 p.m. to Midnight. Knights of Columbus Hall, Bethalto, IL. Tickets: $10.00. Beer and setups provided. Bring your own snacks. For ticket information call 466-1070 or 251-2175.

Down Syndrome Clinic with Dr. Leichtman in South Bend, IN.
On Saturday, December 6th, 1997, Lawrence G. Leichtman, M.D., FAAP, FACMG will be holding a Down syndrome clinic in South Bend, Indiana. Dr. Leichtman is a pediatrician, as well as a clinical and biochemical geneticist, a Founding Fellow of the American College of Medical Genetics, with over 18 years of experience in the clinical treatment of Down syndrome and other genetic abnormalities.
The cost of the clinic will be $250 per patient, availability is limited, and appointments are required.
The clinic will be preceded by a presentation on Friday, December 5th, detailing Dr. Leichtman's observational experiences of the use of TNI as a therapeutic treatment for Down syndrome. David H. Swenson, Ph.D., HH Dow Professor of Biochemistry, Saginaw Valley State University, will also discuss metabolic disturbances caused by Trisomy 21 and the rationale for the use of supplements as a treatment. Dr. Swenson is currently heading a research project investigating CBS disturbances in Down syndrome.
For more information or to schedule a clinic appointment, contact Tamera Ragan at (219) 233-8525.

News Clippings
Lessons from a Friendship by Carl A. Anderson. The Catholic World Report, October 1997, p. 46.
I well remember my last long conversation with Dr. Jérôme Lejeune, the late French geneticist. He had just arrived from Paris to deliver a series of lectures in Washington on the relationship between ethics and science. As we sat in my living room sipping a beer, neither of us knew of the cancer that would soon take his life. Jérôme was not a stranger to Washington, having first come to the city 30 years ago to receive the Kennedy Medal for the remarkable feat of discovering the chromosome disorder which results in Downs Syndrome.
Having determined the cause of Downs Syndrome, Dr. Lejeune proceeded to do what came naturally to him. He sought to help the victims of the disorder; it would not have occurred to him to eliminate them. Since the time of his historic discovery, he had devoted his life to finding a cure or treatment for the disease. Indeed, it was hard to find him outside of Paris for more than three or four days since he could not stand to be away from his young patients. We spoke about the progress he was making in their rehabilitation. [...]

Down Syndrome Is Just One Part of Who Aidan Really Is by Valle Dwight.
Daily Hampshire Gazette (Northampton, MA), October 11, 1997.

I think it's serendipitous that my second son's birthday comes so close to Mother's Day. Because although I had been a mother for more than three years by the time he arrived, I don't think I had inkling about the real meaning of motherhood until Aidan came along.
It was in mid-May the first hot day of the spring last year. Much like his older brother, Aidan came into the world wailing, arms akimbo, red hair matted to his head. But when the midwife handed him to me, I looked right into his tiny face and I thought, "Hmm...Those eyes look a little strange." I put that thought aside, but an hour or so later, the midwife came back in and announced that there was a possibility that our baby had some "chromosomal problems." I quickly went into denial. "Oh, a chromosomal problem. I'm sure they can fix it."
My mind didn't register her meaning, but my body must have, because a chill ran right to my neck. Maybe one of us asked what she meant; maybe she spotted the look of obvious misunderstanding. So she spelled it out. "The nurse thinks he may have Down syndrome."
Now I can split my life in two - before we heard those words, and after. Before, we were probably like most people. We knew we were lucky -- we were healthy, our little boy was funny and strong and happy. We had jobs and a loving family. But until we were hit with those words, I don't think we were quite so aware of how fragile that luck is. I knew nothing about Down syndrome. My first thought, even as I nursed him in the hospital, was "How will he get a job?" My instinct was to hold him tightly against a world that seemed irreversibly changed. When the tears dried and I was able to see beyond the gloom, I began the long learning process that will continue, I imagine, for the rest of my life. I went online, I read books, I talked to people (I was surprised to find that everyone in the world, it seemed, was either related to someone with DS, went to school with a person with DS, or grew up next door to someone with DS everyone but me). The factual stuff was fairly easy to absorb: Down syndrome is caused when a person has three of the 21st chromosome, rather than the usual two. This extra chromosome alters the development of the body and brain. What this would mean for Aidan specifically would be hard to say, but he would be mentally retarded to some degree (most people with DS fall in the moderate to mildly retarded range), and would have low muscle tone, making it harder for him to crawl, walk, and talk. The list of the other potential problems was daunting: heart problems, hearing loss, vision problems, small airways making children prone to upper respiratory infections, and on and on.
The other side of the story, the reality of having Down syndrome, and raising a child with Down syndrome in our society, came from talking with other parents, and from living with Aidan. Aidan is more like other kids than he is different. He will learn to walk, talk, read, sing, dance (he is already a sucker for anything that rocks), although it will take him longer than it took his brother. As I watch him stubbornly refuse his vegetables, blow me a kiss goodnight, and burst into a smile at the sight of his brother, I know that, contrary to stereotypes, kids with DS are not always angels, and have a range of personalities, aptitudes, and temperaments. Although for the first few weeks all I could think about when I looked at Aidan was "Down syndrome," I've since realized that DS is just a small part of who he is and what he will become.
Sometimes I still get sad about the "might-have-beens", especially on the days when Timmy makes plans about things he and Aidan will do together, and I wonder which of those dreams will come true. Many days I feel guilty and unsure about whether we are doing enough for Aidan. Would he be doing better if we could afford this program, those vitamins, or that new therapy? And sometimes I get scared about what's down the road, especially when I think of the struggles he may face making friends in those horrible junior high years, or making his way in this culture that places such high value on convention and looks.
But as we head into year two of Aidan's life, I've long since realized that our luck did not run out the day he was born. Not at all.
In many ways our lives have been transformed. We have found loving support from people who used to be strangers. We look at the world differently, and consider ourselves lucky to do so; we have an appreciation for a slower pace, take delight in each small step; and have a newfound understanding of the preciousness of all people.

Einstein Syndrome by Miriam J. Kauk.
© 1994 by The Teaching Home Magazine. July/August, 1994.

Imagine that you have just given birth. You notice a sense of excitement in the room. Finally, the doctor comes to you with a big smile and says, "I have some important news to give you. Based on our preliminary examination, we believe your baby has Einstein Syndrome!"
The doctor goes on to tell you that children with ES typically read by age three, and by six or seven read at a high school level. They can master many languages during their preschool years, develop phenomenal vocabularies, and complete high school by age ten or eleven and college by fifteen. Furthermore, children with ES have remarkable physical skills. They crawl and walk early. Many Olympians have ES. And they tend to be excellent musicians.
Now, how are you going to treat this child? It is doubtful that you are going to leave him in his crib for the first two months, watching a mobile.
Instead, you will keep your child in a room full of activity. You will talk to him, naming items, and expecting him to begin to understand you. You will surround him with classical music. You will read to him as much as you can and begin teaching him alphabet letter sounds very early.
This child will go with you everywhere, just so you can teach him more about the world. He won't be in a playpen; you will be giving him lots of opportunities to begin crawling, and you will expect him to go get things himself. You will probably hire a nanny who speaks another language, and will likely enroll him in gymnastics or swimming classes.
Guess what? Even if the diagnosis was wrong, by the time your child is five or six, people will begin commenting on how incredibly bright he is. He will be an excellent reader, have a tremendous vocabulary, be sensitive to good music, and be exceptionally coordinated, ALL BECAUSE OF THE EXTRA INPUT THAT YOU HAVE GIVEN HIM BASED ON YOUR EXPECTATIONS.
Contrast this with another scenario, this one all too real. After giving birth, there is a stillness in the delivery room. The nurses seem to avoid you. Finally, maybe several hours later, the doctor tells you what is wrong. "Your baby has Down Syndrome. Try not to let it ruin your life."
As you read more about Down Syndrome, this dreary prognosis emerges: Your newborn baby is retarded. He will learn to crawl and walk late. His language skills will always be minimal, and he will never be able to express himself well.
This child might learn to read a little, but certainly not by the age that normal children do, and never well. Even as an adult, he will always do stupid things because he will never learn to think well.
With that dreary prognosis, how are you going to treat your baby? Why bother talking to him? He won't understand you anyway. Why bother reading to him? He'll never learn. Why bother even getting him out of his crib? He isn't supposed to crawl for many months. And guess what? He doesn't learn to walk, read, talk, or think well, just like they all said.
I am convinced that the biggest handicap the Down Syndrome children have is the low expectations of their parents.
Here is a baby who probably has numerous physical problems. He likely doesn't hear or see well. He has poor muscle tone and is consequently weak and had difficulty with each new physical skill. This little baby needs lots of extra sensory input just to balance his physical handicaps.
As a baby, our Mary was content to lie on the floor for hours sucking her thumb. As a toddler, she hardly demanded any attention. With five other children, I had plenty to do and could easily have ignored her. But Mary needs MORE input, not less. I must make a constant effort to interact with her and involve her in what the family does.
I have been accused by a social worker of not dealing realistically with Mary's condition, of being in "denial." But I maintain that as long as I believe that she is capable of normal function, then and only then will I continue to give her the input she needs to get there.
[Note: as a result of that extensive input (with many thanks to NACD [Ed. Note: National Academy for Child Development, 549 25th Street, Ogden, UT 84401. Phone (801) 621-8606, Fax (801) 621-8389. E-mail: nacdinfo@nacd.org] for the how-to) by the time Mary was three, she wasn't in the least passive, but was on the go non-stop.]

Play Pals
Six-week session starts November 3 to December 15. Location: Saint Anthony's Wellness Center, Alton Mall.
Various day and evening sessions for three age groups: Tiny Pals (3-12 months); Mini Pals (12-24 months); and Motor Pals (2-3 years). Fee. $30.00 for 6 classes ($5.00 discount if more than one child enrolled); Health Smart Advantage discount: $3.00. To register or for more information, call 463-5340.

Mounted Miracles
Mounted Miracles is a new program in our area providing therapy for individuals with physical, psychological, and learning disabilities. Horseback riding is a natural form of therapy for the mind, body, and even the soul. When horseback riding is used as a therapy with qualified instructors and professionals, the rider benefits without even realizing it. The fun and freedom involved helps overcome many disabilities. As riders aspire to higher skill levels, they become stronger in body and spirit.
Applications are being accepted for children of all ages/disabilities. For more information on the program or to volunteer your services to this worthwhile project, contact Marlyn Miller at the Operating Center of North American Riding for the Handicapped Association:

Mounted Miracles Equestrian Therapy Center
Addieville, IL (Washington County)
(618) 824-6670

Down Syndrome Newsletters Articles
Children with Down syndrome. 1978-1998 and Beyond! Parents Regional Outreach for Understanding Downs. Orange County, CA.

Web Wanderings
Infobeat 10:59 a.m. ET 10/16/97
New test for Down's Syndrome to be evaluated by Patricia Reaney

London (Reuters) - U.S., British, Dutch, and Danish doctors will soon be testing a new system to identify unborn babies suffering from Down's Syndrome. The revolutionary technique is less invasive, quicker, safer and can be done earlier in the pregnancy than existing methods of detecting the chromosomal disorder.
Professor John Burn of the Department of Human Genetics at Newcastle University, in northern England, said early tests on selected samples have shown it works. "It's vastly better than the existing methods,'' he told Reuters Thursday.
"It's an exciting and potentially a very important development in prenatal diagnosis.''
Burn's team is the British component of an international study that will compare the technique in clinical practice with existing methods.
Down's Syndrome occurs in approximately one in every 600 births and is more common in children born to older women. It is caused by an extra chromosome in the ovum. Up to a third of severely mentally handicapped school-aged children have the disorder.
Unlike amniocentesis or chronic villus sampling (CVS) which carry a risk of miscarriage and are done in the 11th or 16th week of pregnancy, Burn says the new method is completely safe and should be able to detect Down's Syndrome from the ninth week.
Instead of examining amniotic fluid or a sample of placental tissue, it looks at a foetal blood cell that has passed into the mother's system. All it involves is a simple blood test. The fetus produces blood cells in the womb which, unlike most adult blood cells, have a nucleus which contains the chromosomes. But there is approximately one foetal cell in every 100 million cells in the mother's circulation.
"It's not like looking for a needle in a haystack. It's like looking for a needle in a thousand haystacks,'' said Burn.
Applied Imaging, a British firm, has devised a technique to increase the concentration of the fetal cells by spinning and separation and programmed a computerized microscope to find them.
Although early tests have been promising, Burn said the international study will have to establish that it is a sensitive and specific test that picks up all or most Down's cases and does not give false results.
"We will be collecting several thousand samples in Britain and several thousand will also be collected in other centers to see whether it really works in practice,'' he said.
If the international study is successful, the test could be available within two years. In addition to Down's Syndrome it could also help to identify other chromosomal disorders in unborn children. ©REUTERS

From: Lori Atkins
Subject: Set Your VCR
Date: Wednesday, October 15, 1997 3:34 PM

Characters with Down syndrome are incorporated into three prime-time programs this November! (Check local listings for times) Brooklyn native Gary Ruvolo is making his television debut Tuesday, November 4 with a small role in NYPD Blue (ABC). Mr. Ruvolo plays a young man who is wrongly accused of committing a crime in the apartment building where his father is a superintendent. This is Mr. Ruvolo's first major acting role, and he hopes it will lead to many more. Mr. Ruvolo is active with the Young Adult Institute (YAI) in New York City and is interested in bowling, gymnastics and computers. You may recognize him from several newspapers, magazines and brochures about the accomplishments of children with disabilities. He has volunteered at local hospitals and schools, and has earned a salary as a custodian's helper in a public school district.
Andrea Friedman fans will not want to miss her two major television appearances this November. Ms. Friedman has landed leading roles in an episode of Chicago Hope (CBS, Wednesday, November 5) and her own made-for-television movie, Smudge (TNT, Sunday, November 30). In Chicago Hope she plays an independent young woman who is willing to donate a lobe of her lung to save her brother's life. In Smudge, a holiday special based on the book, How Smudge Came, by Nan Gregory, Ms. Friedman's character struggles to keep a puppy in a group home where dogs are not allowed.
Ms. Friedman played Corky's girlfriend, Amanda, for two seasons of Life Goes On, and has made appearances on several other television shows. She guest starred on Touched by an Angel last May, and has been a featured guest star on Baywatch. She is also a seasoned public speaker, plays the guitar and obtained her California driver's license in 1989.
Please write the producers of these programs, to let them know that you are watching and that you care about their portrayals of men and women with Down syndrome. Comments about Smudge can be sent to TNT Programming, 1010 Techwood, Atlanta, GA 30318, or called in to the TNT viewer line at (404) 885-4538. Comments about Chicago Hope should be sent to 20th Century Fox - Chicago Hope, 10201 W. Pico Blvd., Los Angeles, CA 90035. And comments about NYPD Blue can be sent to Steven Bochco Productions, 10201 W. Pico Blvd., Los Angeles, CA 90035.

Father's Journal
Advocacy and Labels
My son Emmanuel spent the weekend in the hospital with chronic diarrhea and dehydration. I need to work on my father figure since each nurse asked, "Does this baby have a mother?" On weekends, I get to enjoy my son, regardless. Once the nurses saw my dexterous diaper changes everything was fine until I asked for my son's medical records. "Parents do not make such requests", undeterred, I replied, "I am my son's advocate", striking fear into their hearts, dirty diaper in hand. I read, Emmanuel Bishop, male, 10 months old, Down syndrome, large protruding tongue. Since my son was born without this characteristic, I said, "Emmanuel, could you please stick out your tongue at the doctor", who had to be present as I reviewed the records. The doctor lamely replied that he did not write that.