March 1999 Issue

Our next meeting will be held on Friday, April 16 at 6:30 p.m., organized by Byron Pinkston and Peggy Mitchell, who are taking the 9 month long course Partners in Policymaking, a leadership training program in Chicago. Peggy and Alice Pinkston will speak on IEP (Individualized Education Plan). The meeting will be held at the Recreation Parks District Office, 10 Gateway Drive, Collinsville, IL 62234, right of I-55 at the Collinsville exit, across the street from the Gateway Convention City. "Splash City" is on one side and the Recreation Parks District offices are on the other. Baby sitting services will be provided and a social hour to meet parents with a potluck theme of pasta, salad and bread. Bring your own drinks. We need a volunteer family to provide a dessert.

There was a great Illinois family turnout at the Greater St. Louis Down Syndrome Annual Conference, March 6, with keynote speaker Barbara Gills, author of Changed by a Child: Companion Notes for Parents of a Child with a Disability.

blank.gif  STARnet Illinois Region IV Workshops
April 29 & 30. 9:00 - 3:00 p.m. Parents Interacting with Infants (PIWI). This workshop will focus on a model that places the parent-child relationship at the heart of early intervention services, emphasizing the reciprocal influence between this relationship and the child's development. Presenter: Tweety Yates, faculty of the University of Illinois at Champaign. Ramada Inn, Mt. Vernon, IL. For information, contact STARnet at 397-8930.

Regional Events
Illinois TASH Conference. Oak Brook, IL, February 22-24. Contact: Mark Doyle, (630) 644-0828. Arc of Illinois Annual Convention, Focusing of Self-Determination: What Are We Waiting For? May 5-7, at the Holiday Inn East, Springfield, IL. Keynote speakers: Dan Wilkins: Find Your Courage, Share Your Vision, Change Your World. Jeff Strully: Creating Desirable Futures. Cary Griffen: Employment for Anyone, Anywhere, Anytime. Commissioner Sue Swenson: Advocates Do Make a Difference. Jim Gill: Sharing Playful Interactions. Call The Arc of Illinois office at (708) 206-1930 for a full brochure.

The Down Syndrome Association of Greater St. Louis Monthly Parent Play Group meets every second Thursday of each month at 211 North Lindbergh from 9:30 a.m. to 11:30 a.m. For more information call Karen Voda at (314) 645-8939.

The STARnet Library on-line catalog is now available on-line at:, e-mail: For more information, contact Pat Adams, Library Media Specialist, 397-8930, extension 177, e-mail:

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:

State of Illinois Senate Bill No. 1065 synopsis provided courtesy The Arc of Illinois, 18207-A Dixie Highway, Homewood, IL 60430. (708) 206-1930. Fax: (708) 206-1171. E-mail:

Amends the Early Intervention Services System Act. Makes changes to reflect that services shall be provided, to the maximum extent appropriate, in natural environments in which infants and toddlers without disabilities would participate. Removes as eligible infants and toddlers at risk of having substantial developmental delays due to a combination of serious factors. Removes the Department of Public Health as an agency involved in the provision of or payment for services. Removes provision requiring the lead agency to define at least 40 and no more than 60 local service areas and replaces the coordination/advocacy provider with a regional entity designated by the lead agency. Changes the regional entity designated by the lead agency. Changes the requirements for the resolution of complaints by parents. Makes changes regarding how and what fees may be charged. Repeals provision requiring the implementation of the Act as funds become available. Effective immediately.

News Clipping
Expect 'everything' from Karrie Brown. ©The Jersey County Star, February 18, 1999, p. 7.

     Two-year-old Karrie Brown of Grafton was the subject of a news report Monday on St. Louis' KMOV Channel 4 with the television crew spending the morning with her and her mother as they carried on their typical routine.
     What makes Karrie special, is that she was born with Down syndrome, something her parents said would hinder her physical and mental development. Doctors told her family after she was born in 1996, "never expect anything" from their daughter.

blank.gif       Karrie will begin school this fall as part of the Jersey schools Pre-K program in Grafton.
Her mother, Sue Brown, spoke to TV reporter Al Wineman about Karrie after he had a report on a news program about children with Down syndrome.
     Monday, Wineman and reporter Ray Preston, went through a morning with Karrie, accompanying her to St. Anthony's for physical therapy and then to Jan's Kids Learning Center in Jerseyville. Brown put together some background on Karrie's first two years, recalling some of the thoughts and concerns she has gone through since her birth. Doctors told the family that she wouldn't crawl until she was at least three years old, wouldn't walk or talk until she was five.
     "The doctor told me never to expect anything from my daughter."
     "Karrie was born on a Monday, had kidney failure on Tuesday, heart surgery on Thursday. Her respiratory system failed on Friday. By Saturday, she still was unconscious and the family was told that she probably wouldn't make it," Brown writes. "She regained consciousness Sunday (Mother's Day) and the next day the doctors told the family of Karrie's "horrible future".
     Brown said she was enraged at the misinformation the doctor was giving her, telling her "if I never expect anything from my child, that is exactly what I'll get".
     Karrie learned to crawl at 13 months and by 20 months she was walking. Now, she runs and climbs with assistance. She has over 60 words in her vocabulary and uses 160 signs she has been taught. At three months, she began physical therapy, at 12 months, she started speech therapy and at 16 months she began occupational therapy.
     "But through it all," she said "it's been important that Karrie has a chance to be a child."
     That is where Jan's Kids comes in.
     Jan DeSherlia praised Brown not only her devotion to Karrie, but her attitude about her child's ability to thrive as an independent child.

     DeSherlia notes that when Karrie comes into Jan's Kids, she knows she must take off her coat, hang it up and put her book bag away.
     "How many two-year-old children could be that responsible," DeSherlia commented.
     As an educator, she continued, she knows that Brown has "put aside the will to swoop Karrie up and protect her" doing for her more than she would do for another child.
     DeSherlia praised Brown as an "extraordinary" person researching, studying and gaining the knowledge of an educator of Down syndrome.
     Karrie participates in all preschool activities from painting, to gluing to playing with a parachute.
     "She loves school and loves the children," DeSherlia said, "she loves to learn."
     "There is a whole world out there for Karrie to love, see and explore just like all the other children," she said.
     Brown sums up her feelings, "as Karrie grows, I continue to learn. I've learned that Karrie is going to succeed at what is important to her. I have learned to put my ego aside and look at what my daughter truly needs. I've learned that my hopes and dreams are just that - mine. Karrie has her own agenda and her own hopes and dreams. I try to guide her, nurture her and provide her with the help she needs. But most importantly, I try to let her be just who she is, a beautiful little girl, who happens to have Down syndrome."

Down Syndrome Newsletter Articles
Tips for Getting Quality Education Services. Reprinted from NADS News. The newsletter of the National Association for Down Syndrome. March 1999.

blank.gif  Adapted from the California Protection and Advocacy, Inc. web site. Before the IEP Meeting:
  1. Request evaluations in writing or get independent evaluations.
  2. Ask to obtain evaluation reports on week before the IEP meeting
  3. Plan for the meeting with a friend or advocate.
  4. Consider full inclusion.
  5. Make a list of the points you want to raise at the IEP meeting.
At the IEP Meeting:
  1. Bring a friend, advocate, and/or person who knows your child.
  2. Do not be afraid to ask questions: make sure you understand any "jargon".
  3. Discuss the present level of your child's performance.
  4. Develop annual goals and short-term objectives.
  5. Identify full inclusion or integration opportunities and the supports needed for success.
  6. Describe the placement of your child and identify specifically the supports and related services needed.
  7. Sign the IEP only if you are satisfied.
After the IEP Meeting:
  1. Meet your child's teacher(s).
  2. Support your child in developing friendships with classmates.
  3. Monitor your child's progress.
If things do not work out
  1. You can request mediation.
  2. You can file for a due process hearing.

Web Wanderings
Piano Lessons Boost Math Scores © Reuters Health. New York, March 18, 1999.

Second-grade students who took piano lessons for 4 months scored significantly higher on math tests than children who did not, according to a study in the journal Neurological Research.
Dr. Gordon Shaw, a University of California-Irvine emeritus physics professor, told Reuters Health that he believes piano instruction helps to "hardwire the brain in such a way that children are better able to visualize and transform objects in space and time."
Shaw notes that playing music involves mathematical concepts such as counting time, understanding intervals, ratios, fractions, proportions. Musical training appears to help children to grasp concepts basic to proportional math.
"Proportional math is usually introduced during the sixth grade, and has proved to be enormously difficult to teach to most children using the usual language-analytic methods," said Shaw. "Not only is proportional math crucial for all college-level science, but it is the first academic hurdle that requires children to grasp underlying concepts before they can master the material. Rote learning simply does not work."
Shaw gained attention in 1993 when his research showed that college students scored higher on spatial-temporal reasoning tests after listening to a Mozart piano sonata. In this study, he and fellow researchers divided 135 second-graders at an inner-city school in Los Angeles into three groups. One group received 4 months of keyboard training and solved math and geometric puzzles on a computer using a new software program called Spatial-Temporal Animation Reasoning (STAR) that allows children to manipulate shapes in their minds. A second group used the STAR software and was given standard English instruction that also utilized the computer. The third group received no special instruction.

blank.gif  The piano/STAR group scored 15% higher than the English/STAR group overall and 27% better on the 16 questions devoted to fractions and proportional math. And both groups performed more than 100% better than the group of children who received no additional instruction.
Shaw hopes his findings will help fuel the fight to get music instruction back into schools. "I understand the point of view that says music should be studied for its own sake, not to develop better skills. And that's fine for middle-class children whose parents can afford music lessons. But what about those children whose families cannot?" he asked. He suspects that the decline of music instruction in schools could be one reason American children do not do as well in math as children from other countries. "Certainly we see that countries where children do well in math, take Hungary for example, also offer years and years of musical training in their schools."
He plans to expand his study to six more schools this fall to demonstrate the effectiveness of playing piano and using the math puzzle software.

Source: Neurological Research 1999;21:139-152.

Father's Journal
Thinking about Baby Tarzan
We all got the stomach flu: we were sick and throwing up and my wife Gloria, bless her soul, mentions the opening scene of the Tarzan movie, where the parents are weak and dying of malaria and there is no one to take care of baby Tarzan and their hut starts on fire. So here I am in bed with fever and this scene in my mind that my wife kindly transferred to me so she could sleep.