February 1998 Issue

We welcome the arrival of Erika Nicole, daughter of Julie Slimick, born February 1, 1998 at St. Mary's Hospital. This issue is dedicated to Erika Nicole. Our next meeting will take place on Friday, February 27th at 6:00 p.m. at our apartment.
Our guest speaker will be Linda Orso, whose daughter, Lydia is 20 years old and has Down syndrome. Linda was on the Board of Directors at the National Association for Down Syndrome (NADS) in Chicago for 13 years and has been involved in parent support since Lydia was 4 months old. She plans to give an informal sharing of her experiences and successful strategies she has used to overcome obstacles she has encountered in raising Lydia. She will focus on the early years, but will also discuss the later years since it is helpful to hear about what's up ahead. She has several resources to tell you about, including videos, posters, handouts and bibliographies. We plan to serve lamb cous-cous, a Moroccan dish.

The Riverbend Down Syndrome Association and the William BeDell Center (ARC) are organizing our forthcoming meeting on Friday, March 27th at 6:00 p.m. at the William BeDell Center, 400 South Main, Wood River, IL. The speaker will be Larry Lock, of The Dignity Group in Chicago, a non-profit organization dedicated in helping families with entitlement programs, proper preparation of wills, trust documents, guardianships, power of attorney and life care plans. Baby sitters will be available; please call us, at the phone number above, in advance to secure this free service. Refreshments and snacks will be provided. The presentation is open to all parents and relatives of a disabled person.

STARnet Illinois Region IV Workshops
March 28, 9:00 a.m. - 3:30 p.m. 1998 Family Conferences. Sharing Our Stories. Sharing Our Support. Keller Convention Center. Keynote speaker: Bill Kienzle, Advocacy Coordinator for T.I.E.S Network, based in Springfield. Effingham, IL. $10.00 registration fee includes continental breakfast and lunch, pre-registration is required before March 20. For more information contact Sharon Gage at 397-8930 extension 169.

Regional Events
February 12. 9:30 a.m. - 11:30 a.m. The Down Syndrome Association of Greater St. Louis Monthly Parent Play Group, 211 North Lindbergh. For more information call Karen Voda at (314) 645-8939.

February 20. 8:00 a.m. - 4:30 p.m. Sexuality and Disability & Self Concept and People with Developmental Disabilities, featuring Dave Hingsburger, presented by MO-TASH. Henry VIII Hotel, 4690 North Lindbergh, St. Louis, MO. Conference fee: $55.00 for TASH members, $85.00 for non-members. Lunch is included. For more information contact Jocelyn Jones-Waller at (314) 567-7705.

March 10. 9:30 a.m. - 3:30 p.m. Beyond Person-Centered Planning: Creating Opportunities, presented by John O'Brien, sponsored by The Arc of Illinois. Location: Holiday Inn, 500 Holiday Plaza Drive, Matteson, IL 60433. Registration fee: $25.00 for Arc members, $35.00 for non-Arc members. For more information contact The Arc of Illinois at (708) 206-1930.

March 27. 9:00 a.m. - 3:30 p.m. Inclusive Education "Believing and Belonging", presented by Norman Kunc, sponsored by Heart of Illinois Down Syndrome Association. Normal Theater, 209 W. North St., Normal, IL. Workshop fee: $35.00. For more information call (309) 672-6311 or (309) 444-2508.

News Clippings
School rules leave charmer on the sidelines. 7-year-old can't cheer during games anymore by Jennifer Toomer-Cook, Deseret News staff writer.

KAYSVILLE - When Amy Leo isn't cheering for Davis High School, she's teaching herself new stunts. It's sheer bliss for the 7-year-old to sport a custom-made cheerleading outfit, clap, kick and spin on the court with the older girls. Amy, who was born with Down syndrome, easily charms spectators with her self-taught cartwheels and round-offs. Even fans from the visiting team grin and applaud. But Amy's show has been cut. Because of liability concerns, she cannot cheer with the squad during school athletic events under rules of the Utah High School Activities Association. But principal Scott Greenwell and Amy's father, Dave "Skip" Leo, a Davis football coach, have put their heads together to keep Amy in the show - before games and at halftime. Amy, who has taken dance lessons half her life, has yearned to be a cheerleader, making up her own cheers on the sidelines while her dad coached. She got her big break last Halloween. Sporting the costume of her heroes, Amy was allowed to cheer at their sides. She was an overnight sensation. By the time the playoffs rolled around, Amy cheered full games. A cheerleader's mother, charmed by the little girl, made the Layton Elementary first-grader an official cheerleading uniform, complete with gold trim and sparkling hair bow.
     "When you have a baby born with Down syndrome, you're given absolutely no guarantee of any kind," said her dad, who is also a Kaysville Junior High math teacher. "We had to get her involved in as many activities as possible and teach her to live in the public. If she's interested in it, we flood her with it. "It has been so much fun for us. I'm bragging, but she's so doggone cute. There's been a lot of good that's come from this."
     Drum major Beth Payne agrees. During football season, Amy rushed from the stands to dance to the band's first note. "It made the whole band feel like we were really accepted," said Payne, a senior. "She makes everyone feel that they're part of something." Spectators compliment Amy after games. Parents of children with disabilities telephone Dave and Vicki Leo, seeking tips to help their little ones experience similar successes.
     This particular success may soon be a memory. Amy won't cheer at road games any more. Next year, she probably won't cheer at all. UHSAA bylaws state that children younger than high school age are banned from sanctioned interscholastic activity, except during halftime performances, Greenwell said.
     The rule was brought up during a meeting of region principals, Greenwell said. Cheerleaders perform under the basket during games. "Nobody (wanted) to hurt the girl's feelings or her family's or the fans' or cheerleaders' feelings, but we are in violation," Greenwell said. "She's popular with me, especially. It's such a nice thing to see her so actively and energetically involved in something. She's just a little darling."
     Enforcing the rule is unpopular with the team's fans. It's harder for her parents to be cheerful about the change with the stream of phone calls questioning its logic. "The community basically is telling me we got burned. I didn't know we got burned," Dave Leo said. "The problem I'm having is answering calls at home from people wanting to know what's going on. I don't know what's going on," he said, adding no one has come forward as the complainant. Some students wanted to start a petition over the issue, said Sue Sprague, a cheerleader. "I think it's ridiculous to deprive her of this opportunity" that may not come around again, said Sprague who, sitting out of routines due to an injured back, sometimes cradles Amy in her lap. "It hurts me to see Amy hurt like that. I never could have told her."
     Breaking the news wasn't easy. The confused child's eyes welled with tears when her parents escorted her to the bleachers. "She was mad at Dave and I. She thought it was us not letting her go out there," Vicki Leo said. "It just broke my heart." The cheerleading squad gave her the official team necklace - a silver chain and megaphone charm - to ease her sorrows. On Friday, Amy's parents brought a bag of gummy bears and a bottle of Diet Coke to bribe her to the stands. At game time, Amy climbed up two benches, wiped her brow and sighed. Munching a gummy bear, she studied her 19 "teammates," occasionally moving her arm or clapping, once standing on the bleachers. Soon, the temptation became unbearable, and she told Mom she was ready to cheer. Luckily, a time-out intercepted what could have been tears. "I think it's a crying shame to take away the little happiness it gives her," said Leslie Allen, whose husband is a school police officer. "Why can't she be out there the whole time?"
     A rule is a rule, Dave Leo said. He just hopes it's enforced across the board. "I've been in the schools 23 years. I know you've got to cover your backside. And we've been treated like kings and queens here," he said. He also hopes bitterness won't overshadow his daughter's experience. "I would hope (people) would look out there and see my daughter and say, 'Hey, everyone can do something. Everyone can be successful at something, no matter what their limits are.' And I don't even know what this little girl's limits are. "I'm the happiest dad around because I get to go watch her cheer tonight."

Letter to Ed Stansel, Florida Times Union reporter.

I couldn't help but letting you know about something that happened to us which really complements your article in Sunday's paper "There's more to the Internet than sleaze, despite recent headlines".
My wife is pregnant with our first son (second child). About three weeks ago my wife and I received news that really floored us. The results of an Amniocentesis on my wife revealed that our unborn son had Down syndrome, needless to say this was a real shock to us. The doctor told us of our options, to either have an abortion or have the baby. We really didn't know what to do or where to turn. No one in my wife's family or mine have special kids and we didn't know anyone of our friends who did either.
Faced with the decision whether to have an abortion or not, which caused us many sleepless nights, I turned to the Internet. I found an e-mail list for parents with Down syndrome and subscribed to it. I drafted a letter and sent out to the e-mail list server. A copy of the letter is shown below.

Hi everyone:
I am new to this list. Last Wednesday we got news that kind of floored my wife and I. The doctor told my wife that the amnio had come out positive and that our baby son had DS. To say the least this has been a real shock for us both, especially for me. We have a meeting on Monday (March 10) to speak with him about this, our options and some other things. Of course one of the options he will probably discuss is the "A" word. My wife is 22 weeks as of this moment and she does not like the idea of an abortion.
I would like to know from people like yourselves who have children with DS how things are in the real world. My wife and I have different views on our situation but we are trying to talk and make a decision.
I have a beautiful healthy six-year-old daughter and I'm sure this would not be a problem for her. She has wanted a brother or sister for a long time. I know a lot of woman find out when the baby is born, but then there are those that find out with the amnio who still go through with the pregnancy.
I do not in any way mean to offend anyone. Please except my apologies if I have. The people I have mainly talked with are a few close friends of ours and some family. We have gotten mixed answers. Most of my friends have told me they couldn't do it or it's too much work, etc., but they do not know because they have normal children.
I would appreciate any input you could give me. I know ultimately the decision will be up to my wife and I and no one else.

Thanks, Bob

Well what happened next was truly unbelievable. We left to go pick up our daughter and we were gone for about two to two and half ours. When I came back I already had 31 e-mails waiting for me in response to my letter. The people who wrote these letters were not judgmental or prejudicial in any way. They all told us how it has been a blessing to have their special needs child and they don't know how life would be without them. I got e-mails as far as Australia. I even got one letter from a person in the West Indies who lives on a volcano. These letters were so true and from the heart that they brought tears to your eyes. Since that time I have received a total of over 150 letters on this subject. These people really helped us deal with what we considered to be a tragedy in our life and turned it into a blessing through these letters.
Needless to say we have decided to have the baby and I think the baby may partially owe his life to the Internet also. I totally agree with your article and it is a shame that people only cling to bad things on the Internet. The Internet is a tool, which can be used for good or bad, but the good outweigh the bad a million to one in my opinion. [...]

Thanks & God Bless,
Bob, Maggie, Nicole (6) & Kyle (Due July 12, 1997)

The Life Planning Newsletter. A Special Newsletter for Persons with Disabilities, Their Families and Professionals who want to Plan for the Future. Subscription: $24.95.

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Web Wanderings
Inarticulate family leads researchers to speech gene by Maggie Fox, Health and Science Correspondent http://www.infobeat.com/ ©REUTERS 11:54 AM ET 01/26/98.

WASHINGTON (Reuters) - A family plagued by an inability to make themselves understood has led to the first proof of a gene controlling human speech, researchers said on Monday. Geneticist Anthony Monaco and colleagues at Oxford University in Britain have named the gene SPEECH1. "It's definite confirmation and first evidence of a real gene involved in language development," Monaco said in a telephone interview.
"It means that genes are probably heavily involved in the ability to acquire language." Experts have long said humans are "hard-wired" to acquire language and the area of the brain involved, known as the planum temporale, has been identified. Children who get no language input -- for instance profoundly deaf children who are never taught sign language -- still make up their own languages, with grammar and sentence structure. Monaco, who also helped map the gene for muscular dystrophy, set out to see how genes might be involved in language. His team worked with a family with a history of language disorders. "They have two different language problems -- one is in articulation of speech. They are very hard to understand." The condition is known as motor dyspraxia. "It's a fancy word for not being able to get the words out and be intelligible," Monaco, who reported the findings in the journal Nature Genetics on Monday, said. "The separate problem is that their speech is very rudimentary -- it isn't developed according to the age the child should be. They don't achieve the milestones at the age they should, for instance getting tenses and grammar wrong." The gene, tracked to chromosome seven, is a dominant gene, meaning that people only have to inherit one copy to be affected. Males and females are equally affected by it. Probably by coincidence, it is near the gene known to cause cystic fibrosis when mutated. Now Monaco's team is looking to see if there is a mutation of the gene, or perhaps a deletion in which large pieces of genetic matter are simply missing. The effects are particularly strong in this one British family, but Monaco said speech disorders like theirs, on a smaller scale, affect up to 2 percent of schoolchildren. "What we hope is if we can understand the gene it can tell us more about the process on which language is built," he said. Monaco is doing a larger study with 100 families whose members have speech disorders. He suspects there could be a link with autism, which causes victims to withdraw, and dyslexia, which causes people to have trouble reading. "Lots of children with language problems go on to have reading problems," he said. "We just did a screen for autism and to our surprise we found the same region of chromosome seven." This might not mean anything but the researchers are checking further, Monaco said.

Father's Journal
As the bars close for the night, we share the road on our way to Nocturnal Adoration. For an hour I pray for parents who have lost a child with Down syndrome during heart surgery, while I hold my son, as he drinks his bottle.

Se habla español
"Well, you have to make up your minds if you are going to speak to him in English or Spanish". We are not going to limit my son's abilities due to his disability. I only know nursery rhymes, children's songs and lullabies in Spanish. Emmanuel needs to learn English: it is the only language his therapists speak.