December 2004 Issue

Our parent support group has scheduled monthly meetings the first Friday of each month at St. Paul's Lutheran Church, 106 N. Border St., Troy, IL 62294 from 6:30 p.m. - 9:00 p.m. From 55/70, take the Troy/162 exit (#18). Go east on 162 towards Troy. Go 1.3 miles. Turn left on West Clay Street. Parking lot will be on your left.

Toys R Us Fundraiser Sunday, November 28, 2004, 6:00 -9:00 p.m. Join the Down Syndrome Association of Greater St. Louis families and friends at the Bridgeton Toys R Us. We'll have the place to ourselves! The night features; hassle-free holiday shopping, half off clearance items, raffles every 15 minutes, Games prizes, Free Kid ID program, Face painting, and a special visit from Geoffrey the Giraffe. 2% of total sales will help to pay for the Holiday party! RSVP before November 23 by calling Barbara at the DSAGSL (314) 961-2504.

Kate Trudell has been selected to serve as the Easter Seals Child Ambassador for the state of Missouri during 2004-2005. She was nominated because she has received Easter Seals services since early 1999.
Kate and Stephanie both enjoyed the toy library, Lekotek, and Kate utilizes a car seat that was loaned by Easter Seals' KARS (Kids Are Riding Safely) program.
To serve as Child Ambassador, Kate attends various Easter Seals events. She participated in two "Walk With Me" events this past summer — one in Forest Park and the other in Jefferson City, Missouri. She and her family walked a mile and then Kate helped hand out awards.
Kate's mother will be speaking on behalf of Easter Seals on a number of occasions and will be involved in helping to plan the annual Easter Seals ball, which is the major local fundraiser for Easter Seals of Missouri.

Chris, Kate and Morgan
Chris, Kate and Morgan. Photo credit: Easter Seals of Missouri

Regional Events

Winter Holiday Party, Sunday December 5, 2004, 2:00 p.m. - 4 p.m. We're ready to roll on a new twist to the Down Syndrome Association of Greater St. Louis Holiday party. Join us for a Bowling Party at Tropicana Lanes, 7960 Clayton Road. Party includes: two hours of bowling fun, shoe rental, bowling on Cosmic Lanes, snacks and a visit from Santa (drinks and food also available for purchase at the Tropicana snack bar). No charge for current DSA members, non members guests $3.00 per person payable at the door. Bring 2 dozen cookies or another holiday treat to share. RSVP by November 30 to the office (314) 961-2504. Fun for the whole family!
moonlight is the newsletter of the Riverbend Down Syndrome Association.

Editor: Victor Bishop
Web Site:

Winter Wonderettes 7:30 p.m., Thursday, December 16, 2004. Southwestern Illinois College, Belleville Campus Theatre, 2500 Carlyle Avenue, Belleville, IL
Warm up with The Marvelous Wonderettes as they return to their hometown for a Christmas concert celebration, complete with '50s and '60s holiday tunes. Winter Wonderettes is free to all individuals who are clients of sheltered workshops, group homes or for those enrolled in special education or who participate in Special Olympics. Teachers, families and all area service providers are also invited. Running time: 90 minutes. There will be one 15 minute intermission. Reservations are required.
A Southwestern Illinois College Campus Map and parking directions will be mailed to you upon reservation. If you require wheelchair seating, please inform us upon making your reservation. This show is a holiday gift to you from Belleville's premier community theatre, Limelight Players.
Southwestern Illinois College is wheelchair accessible.
For more information or to reserve seats please call Donna Biffar (618) 977-0859 or E-mail:

STARNet Region IV

January 8, 2005. Child Care plus+ Curriculum on Inclusion: Practical Strategies for Early Childhood Programs. Registration & Morning Refreshments: 8:30 a.m. Workshop: 9:00 a.m. - 12:00 p.m. Location: Uni-Pres Kindercottage, 564 Veronica Avenue, East St. Louis, Illinois.
This workshop is Part 4 of a 6-part training. You may attend one, several or all in this series of trainings. These workshops will help early childhood professionals by offering useful suggestions and ideas for minor modifications that make it easier to include children with a wide variety of needs.
Guiding the Behavior of Young Children: Intended audience: Child Care Providers, Early Childhood Regular and Special Education Teachers, Head Start Personnel, Parents, Administrators, Teaching Assistants. Contact Person: Cheryl Neville, (618) 397-8930, ext. 166, E-mail:

Down Syndrome Articles

In the eyes of those people who love him, Seth is a perfect child by Frank H. Boehm, M.D. E-mail: Reprinted from the Nashville Tennessean, Healing Words Column, September 14, 2004 with the permission of the author.

Over the past 38 years, I have participated in the care of thousands of pregnant women and have attempted to answer the many questions that each patient invariably wants answered.

While these questions are often specific to each patient's pregnancy, one common question usually surfaces at some point in our discussion, "Is my baby OK?" Because it is so difficult for me to define "OK," this question has always been a tough one for me to answer.

At the heart of this question lies a pregnant patient's desire to know if her unborn child will be perfect (normal and healthy), a very reasonable concern. Once again, however, defining perfect is not an easy task.

Most pregnant women do not realize that approximately 2% of the 4 million births each year in this country involve the delivery of a child with a significant congenital defect. That translates to one out of 50 births! These birth defects include hundreds of different types of anomalies such as spina bifida, heart abnormalities, limb deformities, metabolic disorders and chromosomal abnormalities such as Down syndrome.

When you consider that each of us begins with the union of sperm and egg, which creates one cell and this one cell continuously divides to create the billions of cells that result in a living child, it is truly a miracle that any of us are born, much less that we are born perfect.

It is with this in mind that I explain to patients that each birth is a miracle and that the uniqueness of each of us is what makes us perfect. I also attempt to explain that normal is in the eye of the beholder. The gift of life can be "perfect" even in the presence of serious problems.

One year ago, my newly born grandson, Seth, was to help me understand this from a different perspective. Seth was born with Down syndrome.

Down syndrome was first described by Dr. John Langdon Down in 1866 as a condition in which a child is short in stature with mild to moderate mental retardation, as well as often being associated with other physical problems such as heart defects. The risk of having a child with Down syndrome increases as women age. At 20 years of age, the risk is one in 2,000 births and at 35 it is one in 365. At age 40, the risk of delivering a child with Down syndrome is one in 100.

I have spent my entire career counseling patients on the risk of delivering a child with Down syndrome. But until the birth of Seth, I had never been confronted on a personal level.

My son Tommy and his wife Lisa were expecting twins - a girl and a boy. I vividly remember the excitement as Julie and I waited during the delivery and cried with joy as we each held a child in our arms in the recovery room. Marly and Seth were perfect. What dreams and expectations we held for these two precious bundles of joy!

Twins on Stairs
Twins on Stairs

Several hours later, however, we were confronted with the fact that Seth carried a diagnosis of Down syndrome while his sister Marly did not. Our family was filled with emotions, from the high that came with the birth of the twins to a low at learning of Seth's disability and knowing that he would be different with possible life-long problems.

Later that evening, holding Seth in my arms and gazing into his angelic face, I was overcome with unconditional love for my grandson. As the tears rolled down my cheek, I understood that despite his diagnosis, to me and those who love him, Seth is a perfect child, to be loved and nurtured, the same as his sister Marly. Our dreams and expectations for him may now be different from those for his sister, yet they are dreams and expectations nonetheless.

To me, Seth is perfect. His 1-year-old smile lights up a room and his laughter brings warmth to all who are near. He loves to cuddle and gaze into the eyes of those who hold him and he embraces his sister with what can only be described as pure affection and love.

Seth is one of many children who are born with birth defects and complications, yet, like so many others, Seth has embarked on a journey we call life. That life will be filled with challenges for him and his family, yet that is also true of each of us as we embrace life with its ups and downs.

As we enter a world in which more genetic information will be available for us to consider in selecting a perfect child, I hope we have room in our world and hearts for those like Seth who are challenged and different, because challenged and different can still be perfect.

Frank H. Boehm is Professor of Obstetrics and Gynecology, former Dir. of Maternal/Fetal Medicine, and former Chairman of the Ethics Committee at Vanderbilt University Medical Center and author of Doctors Cry, Too: Essays from the Heart of a Physician.

At First Glance by Edwin Leap, M.D., E-mail:
January/February 2003 issue of Physician Magazine. Copyright © 2002, Focus on the Family. All rights reserved. International copyright secured. Reprinted with the permission of the author.

The value of a life is always more than meets the eye.

Vacationing near a mountain lake in Tennessee, I watched as a woman began the walk from her cabin to the pool where my children and I were playing. From a distance, I wasn't sure if she was old or young. She appeared heavy, wore a large hat and walked with a slightly awkward gait. It became clear as she drew closer she had been born with Down syndrome. She was probably in her late 20s or early 30s. She did not carry herself with grace or elegance. She was pale, and her one-piece bathing suit was plain, like those that grandmothers wear as they watch their grandchildren splash in the warm water on beaches at low tide.

I was a little anxious. No family or friends accompanied her. She placed her towel on a lounge chair, sat down and faced the clear water. I wondered if she understood the danger and depth of the pool as she sat relaxed near the deep end. My triple engines of worry, fatherhood and medical degree began to make me anxious.

She moved to the edge of the pool, and I fidgeted. Was she even supposed to be there? Was someone looking for her, concerned she might come to harm? I quietly wondered these things as she slid into the water and began to glide across the pool with the even, silent strokes I have always desired but never accomplished. I don't believe my jaw dropped, but I'm sure my eyes widened. I laughed to myself. She had spent years swimming; for all I knew she may have been a special Olympian. The water received and embraced her.

Her kicks were quiet, and the cyclic movements of her arms made no splash on the surface. Her breathing was relaxed and measured, and one might have assumed she was some aquatic creature born and raised in the depths of the ocean. The body that seemed cumbersome on land became graceful and elegant the second she pushed away from the ladder. Her awkwardness dissolved in the water; she was transformed before my eyes.

Too often, those of us with healthy bodies and minds imagine that our world, the one in which we individually dwell, is the best one. We believe, falsely, that imperfect lives are malformations and mutations that should never have occurred. It's easy to make sweeping statements about quality of life when our reference is the quality of our own. I saw in that young woman how easily I could be wrong and how wonderful it was to see the truth.

Sometimes I mistakenly think God's destiny for certain groups is a thing that will begin when He makes them whole, that somehow, those with genetic anomalies or debilitating medical problems will simply have to suffer through and that we will suffer as we care for them until such time as they enter God's presence through death, or He returns to renew all life in the way originally intended.

But the truth is, I can't discern her quality of life. And I have no idea of God's destiny for her. I suspect her quality of life is wonderful, if her swimming was any indication. And she lives, so God must have something in store for her. Maybe we are only a discovery away from a chemical or genetic manipulation that will "cure" her, and with a subtle flick of a biological switch, an activation of what someone thought was "junk DNA," transform her into something hidden in her chromosomes all along: world-class athlete or intellectual giant. Maybe not.

More likely, the ultimate value of her life is something I will never know. God is under no obligation to explain these things to me. I think He smiles as I ponder them, but He will reveal them only in His good time. All I know is that in a few laps across the pool, that young woman showed me that every life has more value than I can ever begin to see, and more wonder and potential than I can imagine.

Edwin Leap, M.D., is an emergency physician in Seneca, S.C.

Tackling the mountain with Down syndrome, you make inroads where you can. Brainwaves, Spring 2004, Volume 16, Number 3. Johns Hopkins Medicine. Reprinted with the permission of Apriel N. Jefferson, Publications Coordinator, E-mail:

"How could you not expect adults with Down syndrome to have sleep apnea?" asks George Capone, M.D., long a Kennedy Krieger specialist in the genetic disorder.

Capone has concerns that a number of adult patients with Down syndrome (DS) are prematurely saddled with a diagnosis of Alzheimer's disease or with depression when their symptoms stem from a sleep disorder. Their anatomy - narrower airways, for example - makes them especially prone to it.

The worry may seem small potatoes given such a broad-brush condition as DS. It's the most common genetic cause of mental retardation. It affects the heart, muscle tone, hearing, speech and, indirectly, most other functions. But Capone has seen too much sitting-on-hands merely because DS may seem overwhelming.

There's clearly value in chipping away at the disease, he says. "People 20 years ago would be amazed to know what we know now." Capone, who directs KKI's Down syndrome clinic, has helped with basic studies-mapping differences in hippocampal and cerebellar volume, for example. He's also sought drug therapy to optimize brain function. "A few percent improvement in some cognitive areas," he says, "could make a real difference."

Studies of the neurotransmitter-enhancer donepezil, for example, show the drug improves memory, learning and attention in lab animals and in patients with Alzheimer's disease. So Capone's directing KKI's arm of an international donepezil study of young adult DS patients. "We know brain acetylcholine drops in adults with the disease," he says. "Perhaps this drug may improve ability."

After a brief neuro exam, Capone will look into Billy McCartin's depression concerns
After a brief neuro exam, Capone will look into Billy McCartin's depression concerns.

As for the sleep apnea study, it's an offshoot of work to halt the cognitive deterioration that strikes many patients by middle age. Pathology typical of Alzheimer's comes with DS, beginning well before age 50, though not all get dementia or decline. "But sleep apnea can mimic early Alzheimer's," Capone cautions. Reaction time slows. Patients may be slower, forgetful and confused, and have impaired executive function.

Almost all adults with DS whom Capone and colleagues tested had abnormal sleep patterns, reduced breathing and lower blood oxygen. Now he routinely sends adult apnea-suspects to sleep studies for diagnosis and follow-up therapy. The suggestion that long-term apnea may make the brain a more fertile ground for Alzheimer's gives him extra incentive.

Last, Capone's addressed the significant number of children in KKI's clinic who have both DS and psychiatric or behavioral problems. DS ups the risk of autistic-spectrum disorders 25-fold, for example. "These children face a genuine problem; often, physicians and educators don't recognize their autism as a distinct disorder." The result, he says, is that children don't get help and parents suffer tremendously.

As a key step in improving the situation, Capone has combined a standard behavioral checklist and classic diagnostic criteria to clearly winnow out autistic disorders in children with DS.

Student reaches goal, helps educate others by Barbara Dumoulin, News Editor. The Alestle, The Student Newspaper of Southern Illinois University - Edwardsville. April 29, 1999. Reprinted with the permission of Tyler Bennett, Alestle Editor, E-mail: Copyright © 1999 The Alestle.

Timothy Showers has been a unique student. His teachers have learned as much from him as he has learned from them.

Showers, who has Down syndrome, will graduate today. He has been a client at SIUE's speech and hearing clinic in the speech department since 1979.

Clinic Director Beth McEvoy said having Showers as a client for such an extended period has helped prepare speech language pathologists who do their training at the clinic.

"We focus on skills for daily living," McEvoy said. "We try to improve speech, problem-solving skills and communication - making wants and needs known."

McEvoy said that often the clinic has the opportunity to study younger clients with Down syndrome and follow their needs as they grow from being a dependent child to an adult. But Showers, who started in the program at age 21, has provided clinic workers with the opportunity to increase their awareness of what people with Down syndrome go through as they grow older and their needs change.

According to Showers' father, Professor Emeritus Norman Showers, his son became a student at the clinic when the program began. The department needed clients to help speech language pathology and audiology students learn in a clinical setting.

Dixie Engleman, associate dean of the College of Arts and Sciences, was on the speech department faculty at the time.

"Dixie Engleman got him started in the program," the senior Showers said. "When the program opened up, he had finished public school and was 21. She said they needed students to work with."

Engleman recalls Tim Showers' early days at the clinic fondly. She said Showers, who called her "The Boss," would make sure she had her five daily hugs for emotional health each morning.

She said he provided the students with a lot of knowledge about how to manage a client who has limitations, but equally important, "how to interact with someone who's such a decent human being."

Gwen Fruend, a graduate clinician and Showers' teacher, said he is one of her best students. "Tim is a wonderful student," she said. "He's the hardest worker I've ever met. He's eager to learn."

Showers' eyes sparkled and his smile widened Tuesday as he looked through photographs in his "Snappy Snapshot" album of memories collected over the last 20 years.

His pictures include a shot of him winning the 1980 Special Olympics state title in the softball throw and autographed pictures of television stars.

He met some of those stars when he was in Hollywood, fulfilling one of his goals. Several years ago he played a part on the television show "The Wonder Years."

Another goal, graduation, comes today.

After graduation? "I'll relax and put my feet up," Showers said.

Raw Silk by Jane Baker. First published in the Down Syndrome Association of NSW Newsletter, December 1993. Reprinted with the permission of Jill O'Connor, Information Officer/Editor, E-mail:

"Mum I don't want to go to school any more."

"I don't like Mrs. X, girl A, Boy B, Mr. Y"

"I can't do it - I'm dumb!"

"No one lets me play any more."

Most parents have heard statements like these from time to time from all their children. Sometimes they're a throw away line uttered in a fit of pique, sometimes they stem from a particular incident and sometimes from a long-term problem that has finally provoked a reaction.

What do we do in these circumstances? We try to find what the problem is, talk to our child, talk to his teacher, her school principal. We devise strategies for dealing with the problem. We keep a close watch on the situation, make adjustments to our strategies as necessary and as a last resort, if the problem is unbearable and our child is still unhappy we take him out of that school and find another school altogether.

Life is a matter of change and adjustment to change.

Changing schools is just such another adjustment. It is not an admission of failure on anyone's part, it's simply a recognition that our child's happiness and positive development is better assured in this school than in that. Some years ago we transferred one of our sons from one secondary school to another because for the second year in a row he was required to complete a semester of sewing against which all his sporting masculine soul revolted. He was desperately unhappy and no resolution of the problem could be reached with the school. No matter that as parents we had chosen that school, it was our son who had to attend and our son whose life was blighted by tape measures and sewing machines. In the new school he had his choice of non-core subjects and he chose, industrial arts subjects. From the day of his enrolment in that school he was a changed person, happy in himself and what he was achieving at home and at school.

In retrospect that decision was one of the better ones we have taken as parents, though at the time it cost us some agonising of mind.

It seems to me that too often our own concerns as parents get in the way of our children's well being. When it comes to our children who have Down syndrome this is much more the case. We have invested so much of ourselves in their years of development to date that sometimes in our concern to give them the best we don't really hear when they say they are unhappy or we don't really listen when they tell us they can't do maths.

We appear to listen, then we go and talk to the teacher. We try to help with maths at home, we buy all sorts of numeracy programs to give extra help, we talk to the teacher again. We suggest ways of making life happier at school for our child. We can see ways in which things could be improved. We talk to counselors, principals. Occasionally we approach District Superintendents. We do our very best but sometimes we fail to see that despite our efforts our child's' level of happiness or feeling of achievement has not been lifted very much at all.

There are many reasons why our child could be unhappy or failing to achieve at school. Some of these reasons can be sorted out and each of us can think. Of particular ones we have sorted out. But there are problems which are beyond our powers of resolution. We can worry them as a dog worries a bone but we can't solve them. In the meantime our child struggles with studies that are too complex or sits alone in a playground, perhaps becomes naughty and disruptive or withdrawn and uncommunicative in class.

There comes a time when we have to say, enough is enough and begin some lateral thinking. No matter the rights or wrongs of the situation no matter who or what we consider responsible for the problem, while it persists our child's happiness is sacrificed, her development put at risk. It is time to look for alternatives.

If our child has been in mainstream education, there are other mainstream schools and other systems of education. Perhaps another school or a different school system would not pose the same problems. If our child has been in a special support unit there are other support units in other schools. We could approach school authorities for a transfer to another unit or we could approach one of the private schools whose philosophy is accepting of children who have learning difficulties.

Seeking alternative placement is neither being a difficult parent nor a troublemaker, nor is it an admission that we or our children have failed in the present school situation. It simply recognises that the present situation is no longer appropriate and it is in our child's interests to find a more appropriate one.

For some of us the big stumbling block is the idea of special education. We are committed to the idea of integration, or inclusion. We believe that our child has the right to be included in all the facilities and activities available to other children and to have the same opportunities as other children. We also believe that as a human being he has the right to be educated to his fullest potential. We have seen him enrolled in mainstream education and we have been delighted as he has moved from one class to the next. We have done everything we can to ensure that he completes his work and keeps up with his classmates.

Then perhaps the day comes when we have to face the fact that he is no longer coping and the suggestion is made that special education would be more appropriate for him. Usually by the time that suggestion is made we have been made aware of difficulties being experienced in the classroom, we have seen our child's sunny nature cloud, we have seen his footsteps drag as he sets off for school. But special education? We baulk at that. There must be a more sympathetic teacher, a more co-operative school, a better program, more up to date teaching methods. He has been mainstreamed for so long now, we couldn't transfer him to special education at this stage.

Education is the issue, not mainstream or special, but simply education. Education occurs when our child is happy and participating in activities in which he can achieve positively. When that is not the case, not only is he not learning anything he can actually regress — he can reach the conclusion 'I'm dumb'. If special education can convince him that he is succeeding, he will be more happy to be at school and he will learn more than he would in the mainstream class in which he no longer feels at home. A transfer to special education can be a new beginning — one of those adjustment just as a change of school can be — changes we make which enhances rather than limits life.

Think of education as a length of raw silk. It is not a smooth span of twelve years with a primary warp and a secondary weft. It is a shimmering length of colour marked by ridges, and knots and bumps that catch the light and give it that night on the town glamour. Those decisions we make in the interest of our child's happiness may seem difficult even unthinkable at the time but it is those very decisions which ensure his education is raw silk, not poly-cotton. And who would wish poly-cotton on anyone!

Web Wanderings

Tuesday's child. September 28, 2003. URL:

Not that either of us believes in an afterlife. That's our problem, Conor and I, we're devout atheists. At this moment of reckoning in our life, when people turn to their faith for support, we couldn't even draw comfort that Caoimhe was the baby that God had sent us or that this was our Fate; there was no spiritual buffer. No, we had been starkly confronted by a random act of the universe, Caoimhe McCooey was the one in seven hundredth baby born with Down Syndrome, and suddenly our lives had changed forever.

Father's Journal

Saint Cecilia

Thou with thy gerland wrought of rose and lilie; Thee meene I, mayde and martir, Seint Cecilie! —The Canterbury Tales.

Emmanuel reads the book title: I want to be a musician, but hands me not the book and I remember when he was three and stood transfixed with a little violin that I gently pried from under his chin.
Before the recital, standing still in front of the mirror, I button his white shirt.
I hug my son's empty violin case and he nods towards the piano that he is ready to play his melody.
Sometimes I wonder if the therapy is about helping her, or me, by making her more acceptable to a critical society and giving me something to focus on. I had no say in constructing a child with her condition, but I can play a part in how she develops. Yet in doing so, I sometimes wonder uneasily if I'm creating a child who is too sophisticated for institutions, but still too vulnerable for the real world.
Will my sadness ever leave? Probably not, I decided. It will continue to be trammeled by a whole host of other feelings most of all joy. Time, that great Band-Aid, will see emotions shake and settle like the flakes in a child's snow dome.
I guess that's why I am writing this. To make sense of the senseless, to create some order from the chaos in my head, so perhaps I can sleep at night. The days are too busy to pay attention to the incessant thoughts, which form a continual backdrop of interference. So far, Caoimhe's life's been a conveyor belt of tests and appointments which provide reassurance, but leave little time for me to get on with the job of mothering. It takes a plethora of professionals to raise a child with a disability and I can't help but feel at times that my nose has been put out of joint, my role diluted.