September 1997 Issue

October is Down Syndrome Awareness Month. The first annual Riverbend Down Syndrome Association's picnic was well attended and a great success. We would like to thank Eric and Loretta Tuegel, who organized this event and provided the hot dogs and hamburgers. Our next meeting, a potluck dinner, is scheduled for Friday, October 24 and will take place at the residence of Eric and Loretta Tuegel. The speaker will be Barb Allen, MS, CCC-SLP. Ms. Allen has been with SISHA for the last five years and is currently working with the 0-3 Program in Jerseyville, IL. The topic will be Down Syndrome and Speech Therapy. Barb Allen will offer us an insight on Libby Kumin's professional communication workshop that she attended last month and answer questions regarding the Hanen® Program.

STARnet Region IV Workshops
October 8-10. Sharing a Vision: Imagine the Possibilities. The 5th Statewide Collaborative Early Childhood Conference, Crowne Plaza Hotel, Springfield, IL. Keynote speaker: Barbara Coloroso For additional information, contact Susan Ferry at (217) 824-4776.

Regional Events
October 9, 9:30 a. m. - 11:30 a.m. Down Syndrome Association of Greater St. Louis Play Group. 211 North Lindbergh, St. Louis, MO. For more information call Karen Voda at (314) 645-8939.

October 17, 9:30 a.m. - 3:00 p.m. Health and Psychosocial Issues for Adults with Down Syndrome. 1913 West Townline, Peoria, IL. Presenters: Brian Chicoine, MD, Sheila Hebein, and Dennis McGuire, Ph.D. Participants will learn:

For additional information, call the Institute on Disability and Human Development (312) 413-3027, TTY: (312) 413-0453.

October 18, 9:00 - 4:00 p.m. Legal and Financial Planning for your Relative with a Developmental Disability. 500 Anchor Road, Dixon, IL 61021. Presenter: Theresa M. Varenet, M.S.W., J.D. Intended audience: families of people with developmental disabilities, individuals with disabilities, community services agency staff, social workers, teachers and attorneys. Topics will include:

For additional information call The Arc of Lee County (815) 288-6691

News Clippings
Minna Snow remembered
Letter to the editor. The Watseka Times Republic, July 30, 1997.
A child of God returned this week - a sweet gift from God to us who knew her and lover her. Her passing some have said was a blessing. I say, "Her living was a blessing."
Five years ago, I had the pleasure of meeting Minna Snow. I was hired to be her personal aide at Watseka High School. Never having before dealt with anyone who had Downs Syndrome, I was not confident I could teach her. I began reading about the disability and planning my course of action. In time, I felt certain I could teach Minna independent living skills that would aid her in the future. Although I was able to achieve success in that area, I soon realized that every day with Minna was a new learning experience for me.
While I was teaching Minna to cook, clean and communicate, she was teaching me compassion, commitment and contentment. I found my misplaced pity for Minna turned to pity for myself and others who, like me, viewed Minna's quality of life as minimal. No matter what the task before Minna, she met it with determination and was persistent in achieving the desired results - never complaining, always accepting. Even during times when she suffered pain and discomfort from swollen hands and feet, shortness of breath and stomach distress, she would continue to do her very best to complete the project at hand. When she finished, she would flash a smile that reflected her satisfaction in having done the job well. For Minna, no job was too menial or degrading. Minna took pride in all that she did. Her only reward was in pleasing others.
It became apparent to me over the course of time that it was my life that lacked quality. It was I who had lessons to learn from this special person. Whenever I felt discontent, I looked to Minna for my inspiration. Contentment was so simple for Minna. Whenever I felt I couldn't endure, I remembered Minna's never-quitting attitude; and when I felt displeasure with the human race in general, I only had to witness Minna's loving acceptance of everyone she met to be reminded of what true compassion really meant: Certainly, it was I who became the student and Minna the teacher.
For those who took the time to know Minna and appreciate her for the exceptional individual that she was, we were blessed and will surely miss her. We will treasure our memories. For those who were too busy, too bothered by her outward appearance and felt compelled to ridicule her or rejected Minna for who she wasn't, sadly, you missed a wonderful opportunity to experience life in its most innocent form. For you, I am truly sorry; but for me, I am honored to have known Minna Snow.
Minna was not a mistake. She was a planned blessing from God for those who sought His blessings.
Jenifer Blood

Imagination Toys, Inc.
Features an extensive selection of quality, creative toys for children of all ages.
9737 Clayton Road (in the Marketplace of Ladue)
(314) 993-6288

"Life for Downs" is a campaign to provide support, education and awareness to parents faced with the knowledge that their baby will be born with Down syndrome (Trisomy 21) and to have all the facts available in making their decision to continue birth and raise a Down child, or have their Downs child adopted. If you are interested as a parent with a Downs child in helping to develop and accomplish the "Life for Downs" goals and objectives, please write to:

John Raper
2030 Royal Oak Court
Orlando, FL 32836-6700

Down Syndrome Newsletters Articles
Reprinted from Down Right Active, October 1997, the newsletter of the Tidewater Down Syndrome Association.
Innovative Treatment Gives Parents New Hope
September 12, 1997
Denver -- (Business Wire) via Individual Inc. -- A Down syndrome child learns to write her name; brain-injured and stroke patients reclaim lost skills; children and adults with Attention Deficit Disorder develop better impulse control; special education students read better. What miracle of science could produce such grand results?
Denver handwriting specialist, Jeanette Farmer, has turned 10 years of intensive research in brain dominance into a phenomenally successful program of handwriting/music therapy which she says "retrains the brain." Building on research by German neurologist, Dr. Rudolph Pophal and others, she has taken the first major step in the United States to establish the physiological/psychological link to handwriting in the brain.
Farmer designed a unique template to use along with specially selected music to teach students to form patterns which stimulate the brain and open undeveloped neural pathways. A multi-sensory process, the brain's messages are allowed to get through and counteract the passive influence that too much television has on a young brain.
Special education teachers in several states report that after just a few weeks of using Farmer's technique, their students are reading better. "A major benefit is that it provides a non-threatening format in which to develop impulse control," explained Farmer. "This makes the child " boss of his/her mind." Impulse control is vital for the at-risk child to focus and stay on-task and absorb new information.
While it actively stimulates the brain, Farmer says her program does not stress a child in trying to meet expectations which create anxiety. A recent success story was reported by an occupational therapist in New Mexico. For nine weeks she had been working with special-needs children. As the class practiced the handwriting/music exercises, a Down syndrome child who had no conceptual understanding of handwriting, slowly began to imitate the others and picked up a pencil and started to scribble. A few weeks later she was trying to retrace the patterns, and gradually began making her own patterns. The big payoff was when she began to write her name, a tremendous accomplishment! Jeanette Farmer was honored in the spring of 1997 with a special "Unsung Heroes" award at The Vanguard International Conference of Handwriting Professionals. Her peers gave her a standing ovation in recognition of the many sacrifices she has made, which include selling her home, to enable her to continue her research. Now her work has caught the attention of educators and therapists and several major school districts plan to implement her handwriting remediation program.
Contact: Jeannette Farmer, 303/740-6161, or Sheila Lowe, 805/259-8979.
[Copyright 1997, Business Wire]

Web Wanderings
The Arc of Illinois is committed to empowering persons with developmental disabilities to achieve full participation in community life through informed choices. The Arc of Illinois has developed a home page on the World Wide Web:

Dose of hope for children with Down syndrome
Medicine: Kennedy Krieger Institute will launch a clinical trial to test the usefulness of a "smart drug" by Jonathan Bor, The Baltimore Sun, August, 22, 1997.
The prescription for Down syndrome has long been love, patience and an acceptance of nature's imponderables. Now, scientists are joining parents in asking: Might there be more?
Baltimore's Kennedy Kreiger Institute will soon start a clinical trial that could prove whether a "smart drug" can enhance the intellect of children with the genetic abnormality.
Called piracetam (pa-RA-sah-tam), the drug targets one of the brain's neural pathways. The trial will be the first to use objective measurements to assess the drug's effects on children with Down syndrome.
Researchers led by Dr. George Capone will monitor youngsters to see if the medicine improves their ability to speak, read and remember - or simply to focus on a task.
The drug has earned glowing testimonials from many U.S. parents who order it through the mail from Europe, Canada and Mexico.
"There are some parents who are claiming that it helps," said Capone, a developmental pediatrician who runs the hospital's Down syndrome clinic. "There are also parents claiming that they don't see very much, and parents who claim outright that they don't see any effects.
"Naturally, you tend to hear the ones who are most vocal about it helping."
On dozens of sites on the Internet, parents share their experience and advice on how to get the drug. The Food and Drug Administration has not approved its sale in the United States. But a person can legally obtain a 90-day supply for personal use from countries where pharmaceuticals are more loosely regulated.
[...] The drug, which is often sold over the counter, can cost less than $150 for a year's worth.
There are an estimated 300,000 families in the United States with Down syndrome children, a condition that is caused by the presence of an extra chromosome in each of the body's cells. Because the chromosome appears in the 21st position - making a trio out of what should be a pair - the syndrome is also known as Trisomy 21.
[...] It [piracetam] was tested as a treatment for dementia, but seemed to be ineffective. It was also tried on dyslexic children "with some interesting results," said Capone, but never widely used.
[...] In general, doctors have warmed to piracetam but have shied away from the nutritional supplements, believing they lack a clear scientific rationale. Many parents, however, are enthusiastic about the supplements and give them along with piracetam. Perhaps the most popular supplement is NuTriVene-D, made by a Baltimore company, International Nutrition Inc. Its president, Robert Pugaczewski, has a daughter with Down syndrome.
Capone said the concept of treating Down syndrome with piracetam is intriguing. The drug acts on one of the brains neural pathways, a complex system in which messages are conveyed from one cell to the next by a chemical messenger, glutamate. "Glutamate is very important in helping to regulate not only the development of the brain, but it's the primary and immediate chemical messenger involved in memory and learning," Capone said.
Piracetam is unlike many other drugs used in psychiatry, which boost the supply or availability of a neurotransmitter. Instead, this drug lengthens a brain cell's "firing time".
"What we're doing is prolonging the duration," Capone said. "It's a fine-tuning adjustment, not a big, bold sledgehammer."
The clinical trial will be limited to children between the ages of 5 and 8, a period in which a normal brain goes through a winnowing-out phase. Some of the neural connections that developed earlier in childhood are lost. As this happens, thinking becomes more focused and disciplined.
Trouble is, Down syndrome children have fewer connections to lose.
"We may be able to strengthen and stabilize those connections rather than have them become weakened and essentially pruned away and lost," Capone said.
Next month, Kennedy Krieger will start a trial involving 10 to 15 children whose IQs range from 45 to 70. Over the course of six months, researchers will administer tests to see if children taking piracetam do better than those taking a placebo. Capone hopes to interest the FDA in providing $500,000 for a yearlong study involving 60 children.
Capone's approach has the support of Dr. Allen Crocker, a Harvard University pediatrician who is co-chairman of the professional advisory board for the National Down Syndrome Congress. That organization recently said that lack of proof prevents its endorsement of piracetam.
"When a candidate for therapeutic usage comes along that appears to be safe and has strong consumer interest, sooner or later the clinical community needs to take a stand," Crocker said. "It's there, people are yearning for the pursuit of positive effects, and there's no way to get there without measurements."
Crocker, who runs the Down syndrome program at Boston's Children's Hospital, said the issue cannot be settled by parents.
"People have said, 'Why not just take testimony from the parents?' " Crocker said. "That's the last way ever to get objective answers. People want badly for the materials to help. They often seek and find happy results from their child's progress."

She's actually equating a cup of tea with killing. Dr. Laura's Monologue. June 24, 1997.
One of the nice things that I love about my job is that I get to connect with so many incredible people. I don't mean show biz types. I mean the listeners. Here is a typical example. We had a call the other day from an Orthodox Jew Canadian listener. His wife is pregnant six months. They think it's Downs Syndrome. He wanted to abort. I was all over him. Got several faxes in return commenting on that call. And this one was just simply the most touching. I got one stupid fax from a Jewish woman who said, "Oh, commenting upon he's Orthodox so he can't abort. You drank a cup of tea on Yom Kippur. Who are you to talk?"
Is this one of the most stupid things you've ever heard. Ernestia didn't even want to show me the fax. She's required only to show me intelligent faxes, which doesn't mean they agree with me, they just have to not be stupid. This was stupid. She's actually equating a cup of tea with killing. It's good I get a good night's rest.
All right. This is from Joe. "Today I heard your advice to a listener who seemed to be trying to persuade his wife to get an abortion. Although I only heard a part of the discussion, I guess their baby, the fetus or product of conception as the doctor might have said, had tested positive for Downs. Your reaction was correct and I would like to add my own. I've been there, done that. My wife and I faced the same decision 13 years ago. We had very little time to decide and based upon a lot of misinformation, primarily from doctors, we aborted. It was the biggest mistake I've ever made in my life and it had much to do with our subsequent divorce. Since then I have become deeply involved in the Special Olympics and can tell you many stories about the remarkable achievements of people with Downs Syndrome. No kid can love you more. God gives special children to special parents. Your caller can get a lot of correct information by getting in touch with the National Downs Syndrome Society in New York. This group can also lead the caller to a local affiliate providing support and advice, also adoption. Tons of parents to be would take in a Downs Syndrome child."
You know, I often get a letter saying, "I did some terrible thing and now I feel guilty and this is a burden on me my whole life and what do I do, and I always tell them, repair it. And Joe found a way to repair it. He's invested his time in Special Olympics. Remarkable person. That's what I like about this job.

Father's Journal
Baby Clothes
It is hard raising a son bilingual in America: he is rebelling and saying "da-da" instead of "pa-pá" I have to shape this son of mine in two weeks, before we go to Texas, to meet his maternal grandparents, who speak Spanish. They are pining so bad to see Emmanuel, that when we sent a care package of baby clothes, which Emmanuel outgrew so fast, to a needy family, the grandparents wanted the package first routed to Texas, so "at least they could see Emmanuel's baby clothes".