October 2000 Issue

Our meetings are held on the first Friday of each month at Saint Anthony's Wellness Center in the Alton Square Mall. For directions call the Wellness Center at 462-2222.
We acknowledge a generous donation in the memory of Sylvia Stickels.

October is National Down Syndrome Awareness Month and we publish the Text of the letter from Windy Smith to the Republican National Convention and Dr. Wrobbel's essay on the human genome project.
We encourage you to vote in the upcoming national elections.

Regional Events
October 14th 1 p.m. Down Syndrome Association of Greater St. Louis Buddy Walk. St. Louis County Queeny Park. 1½ mile walk to promote awareness and acceptance of all people with Down syndrome. Refreshments and entertainment following the walk. Highlights: meet players of the World Champion St. Louis Rams and Channel 4 sportscaster Steve Savard. DJ music, hayride, games, clowns, Fredbird and much more! $7.00 each includes a T-shirt. For additional information call (636) 532-9957.

blank.gif  October 14th 11 a.m.-2 p.m. Lekotek Family Picnic. Woodland Park, Lions Pavilion, Collinsville. RSVP 462-7325 by October 6. Come and meet the other Lekotek Families for an autumn afternoon of fun. Lekotek will provide hot dogs, fixings, drinks and tableware.

October 21, 8:00 a.m. - 4:30 p.m. The NADS 2000 Conference on Down Syndrome. The Ramada Congress Hotel, 520 South Michigan Avenue, Chicago, IL 60605, (312) 427-3800 or 1 (800) 635-1666. Special topics of interest to all age levels. Keynote speaker: All that Glitters: How Loving Someone with Down Syndrome Can Make You Rich, Martha Beck, author of Expecting Adam. Registration fee includes lunch: Parent: $35; Professional: $45; Teen/Adult with Down syndrome: $25. Contact the National Association for Down Syndrome, P.O. Box 4542, Oak Brook, IL 60522, (630) 325-9112. URL: http://www.nads.org.

October 22 - 24. 9th Annual Institute for Inclusive Education Reaching All Learners Conference 2000 at the Renaissance St. Louis Hotel, St. Louis, MO 1 (800) 468-3571 or (314) 429-1100 featuring more than 50 breakout sessions designed especially for educators where nationally-known leaders share expertise and ideas about supporting the learning in today's diverse students. Full 2-day conference fee: $295. For more information contact Dorothy White at (314) 872-8282 or 1 (800) 835-8282, dorothy@info.csd.org.

moonlight is the newsletter of the Riverbend Down Syndrome Association. It is made possible by the William M. BeDell Achievement and Resource Center, 400 South Main, Wood River, IL 62095, (618) 251-2175.

Editor: Victor Bishop
Web Site: http://www.riverbendds.org/

October 25. 10:00 a.m. - 2:00 p.m. Inclusive Recreation Workshop featuring nationally-known expert Cindy Burkhour and sponsored by the Lewis & Clark Community College through an "Inclusive Recreation" grant for the Illinois Council of Developmental Disabilities. This free workshop will explore the many recreation possibilities available to all people and discover how those of us who may have "different abilities" can be fully included in a variety of leisure options. Location: Godfrey Village Hall, 6810 Godfrey Road, Godfrey, IL. RSVP with Linda Orso at 468-4216 by October 20th.

November 8-9. Illinois-TASH 2000 Annual State Conference United in Focus...United in Action. Springfield Crowne Plaza, Springfield, IL. The focus of this conference will be on education, behavior, and transition. This is an excellent conference to identify state resources to be used in promoting supported education. For more information contact Missy Kichline or Deb Goodman at IMPACT 462-1411.

Play Pals. November 13 - December 11. Alton Mall Square. Various day and evening classes are available for three age groups: 3 - 12 months; 12 - 24 months; and 2 - 3 years old. An activity program for infants, toddlers and parents. Fee: $20. To register, call the Saint Anthony's Wellness Center 465-2264 or 462-2222.

Children's Swim Program. Water Babies I ages 6 - 18 months. Water Babies II - ages 18 months - 3 years. Preschool Swim ages 3 - 5 years. Evening and Saturday classes available. Parent/child participation. Lewis & Clark Community College. Call 468-3542 for information.

Text of the letter from Windy Smith to Texas Governor George W. Bush.
Republican National Convention, 4th Session
Wednesday, August 2, 2000

Hi, my name is Windy Smith and I am 26 years old and I'm pulling for you to be our next president of the United States of America. I love to vote and I always stay up to watch the returns.
One day, about 2 years ago, I saw you on TV and I told my parents that I was going to vote for you for president. They said we would have to wait and see if you were running for it and then I saw you again and you said yes and I said yes to you for our country.
I have won a silver medal in gymnastics in the International Special Olympics at Notre Dame (did I mention I have Down syndrome?) and I competed against 76 other countries in 1987. I know what it's like to work very hard and to win too!
I know what it's like to give a speech, too. I gave one of 5 speeches made at my high school graduation in 1996 from Farragut High School in Knoxville, Tennessee, at Thompson-Boling Arena — home of the great Lady Vols.
My uncle J.W. lives in Texas in the hill country and my great-grandfather lived there. J.W. is a fishing and hunting guide all over Alaska and the world. Every summer we go visit him and my aunt.
This June we were at the airport and we saw Mr. Lamar Alexander. He was traveling and making speeches and I went up and talked to him — he knows me because I was on TV with his wife, Honey, for special kids one time and he let me visit his office and they introduced me to the Tennessee House of Representatives.
I've seen him in other places, too. And he knows my name, I didn't tell him I was going to vote for you because I think he's a nice man and didn't want to hurt his feelings. I have a sweet cousin who died this year and my Tennessee governor came to her funeral. I guess politics is just in my heart, but so is God and that's the reason it's important to vote the right way.
When I'm in Texas I like to watch you talk in your state. My mom says Texas and Tennessee are like family. Remember the Alamo and remember why you want to be President! I'm sending you a check for $25.00 (I work at Goody's Clothing Corporate Office) of my own money to help you get to be president. I have a lot of friends that vote and I'm going to tell all of them to vote for you and they will.
I wish I could be at your big party when you win because it will be a happy time for America. May God bless you and your wife and family.

I love you, Windy Smith

P.S. I ran with "Flo Jo" for an opening ceremony one time and she said to ignore the crowd and run for the finish — you just keep running Governor Bush!

Down Syndrome Articles
A Gentle Genocide by E. Duff Wrobbel, Ph. D., Department of Speech Communication, Southern Illinois University at Edwardsville. E-mail: EWROBBE@SIUE.edu

Lately, I can't turn on the TV or pick up a newspaper without hearing someone else heralding the completion of the human genome project. Everyone seems so genuinely excited by all the amazing prospects. New medicines, targeted treatments, perhaps cures for some of the diseases which currently ravage us-certainly cause enough for celebration. You do, of course, hear the obligatory nod to 1st amendment violations and discrimination by ruthless HMO's in most discussions, but the overall tone is always one of jubilation. While I must admit that I too find all these prospects exciting, I was actually saddened when the code was broken at last. I was saddened for myself, for my wife and family, and most of all for my beautiful daughter, because each advance in genetic science takes us one step closer to a quiet genocide. You see, my daughter has Down syndrome, and this project will eventually lead to the elimination of people like her. It is likely that my daughter will be among the last of her kind, and this puts me in a difficult position. You see, I did not want my daughter to be born with Down syndrome. I wish she didn't have it. I wish I could take it away. However, one in every 1000 or so people born on this planet are just like my daughter. This is not a trivial amount of people. In a world of about 6 billion people, this means that about 6 million or so have Down syndrome. There is an eerily familiar ring to this number, isn't there? Just try to imagine that many people. Now imagine them gone. Something like this happened before, and the world recoiled in horror. But as I sit in my living room watching the television, I see an advancing army of well-intentioned scientists marching toward the commission of much gentler and more well intentioned act, but one with an ultimately similar result. Each day, I tell my daughter that she has worth, that she is important, that she is every bit as valuable as any and every other child. She is different, yes, but so are all the rest of us, and it is our collective differences that make us all smarter, better people. I tell her this because I believe it, and I hope she believes it too. And I tell others who ask that my daughter isn't "sick"—she is simply different. She has an extra chromosome, that's all. But now, the scientific community is poised on the brink of eliminating genetic disorders such as Down syndrome, and the part of me that suffers when my daughter struggles to learn, the part that weeps when others say thoughtless, evil things about her, is glad that future children will be spared these things. However, the part of me that wants my daughter to believe me when I tell her how very much she matters doesn't know how to explain why science wants to eliminate people like her. My daughter may have Down syndrome, but she isn't dumb. How do I convince her that this is not just gentle genocide?

Down syndrome: What you should know by Dr. Jason Cheong, published in the September 2000 issue of Down's Update, the Kiwanis Down's Syndrome Foundation, Malaysia.

Tooth Decay My child has got Down syndrome. Why are his/her mouth and teeth important?
Many people underestimate how important our mouths are. It is the organ through which we eat, breathe and speak. People often make judgements about us based on the appearance of our teeth, which in turn affects our confidence and the way we speak. Like all other children, your child deserves the right to have a healthy mouth, which is free of pain. And when they grow up, how they look will become more important to them.
Are children with Down syndrome the same as other children? Yes and no. 'YES' because children with Down's need to brush their teeth at least twice a day using a child fluoride toothpaste (just like other kids their age) in order to prevent decay. They also need to have regular check-ups and cleaning with a dentist who can spot problems before they occur. Remember that PREVENTION is always better than the cure.
And...'NO' because your child will also have problems unique to them which require more effort, patience and attention to deal with than other children.

Mis-shapen Teeth What dental problems could my child have?
Approximately 80% of Down syndrome children will have one of these dental problems:

  1. Your child could get his baby and adult teeth later than other children.
  2. Teeth could appear in a different sequence and positions when compared with other children.
  3. The teeth are often are rounded, pointed or cone-shaped.
  4. The teeth are often smaller and therefore there could be gaps in between them.
  5. They have fewer teeth.
  6. The top jaw is narrow, the tongue appears too big for the mouth and the teeth may be pushed out of place, as the child grows older.
  7. Because of difficulty in breathing through the nose, the child often develops a habit of breathing through the mouth. This leads to a dry mouth with increased chances of dry lips, fungal infections, ulcers, and gum problems (see no. 9.)
    Father's Journal
    Tonight I can write -Pablo Neruda (1904-73)
    After swimming class, my one-year-old son played with a pinecone: scribbled on the sidewalk, then combed my hair.
    At two, he discovered on a West Coast flight, dust particles dancing in the light. "Bubbles" he christened them.
    At three, my son, the poet, can say the most beautiful verses. Can say, for example, la aspiradora tiene hambre: the vacuum cleaner is hungry.
  8. It was first believed that Down syndrome have less decayed teeth in their mouths when compared with other children. We now know that this is because they have fewer teeth - but these teeth are just as likely to develop decay as any other child.
  9. Difficulty in keeping their teeth clean further increases the already-high risk of gum and bone disease. This can lead to them developing infections and losing their teeth early.
Web Wanderings
Presidential Candidates Focus on Special Education by Joetta L. Sack, Education Week, July 12, 2000. Vol. 19, No. 42, p. 34-5. URL: http://www.edweek.org/ew/ewstory.cfm?slug=42speced.h19 [Registration required]