July 1998 Issue

We thank Peggy and Marc Mitchell, of Collinsville, for their kind hospitality at our last meeting. The Mitchell's provided baby sitters, homemade pizza and a delicious salad. To borrow the videotapes viewed at this meeting, call Victor or Gloria Bishop at (618) 208-1659.

STARnet Illinois Region IV Workshops
August 13. 9:00 - 3:00 p.m. The Fascinating Brain: Development in the Early Years. Current research and the educational implications of the research findings for early educators and how to interpret the new information. Presenter: Jennifer Rosinia, M.Ed., OTR/L. Shrine of Our Lady of the Snows, Belleville, IL.
August 14. 9:00 - 3:00 p.m. Understanding Sensory Processing and Sensory Integration in the Early Years. The workshop will provide an introduction to the theory of sensory integration and the role that sensory processing plays in the overall development of the young child. Presenter: Jennifer Rosinia, M.Ed., OTR/L. Shrine of Our Lady of the Snows, Belleville, IL.
For information on either workshop, contact STARnet at (618) 397-8930.

Regional Events
Brief Summer Course in Infant Mental Care. Champaign, IL. Contact: Carol Kolar (217) 352-4060.

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.
Play Pals. Six-week session: July 20 to August 24. Location: St. Anthony's Wellness Center, Alton Mall. Various day and evening sessions for three age groups:
• Tiny Pals (3-12 months)
• Mini Pals (12-24 months)
• Motor Pals (2-3 years)
Fee: $30.00 for 6 classes. To register or for more information, call 463-5340.

Family Assistance
The Family Assistance Programs makes monthly cash payments to families of children who are eligible under state statute 405 ILCS 80, which includes Down syndrome, and live with a parent where the family's taxable income is less than $50,000 per year (Form 1040: line 39; Form 1040A: line 24).
Families receive $500 per month, up to age 18, and are selected by a random drawing during the summer. Families not selected are notified annually by mail and are asked whether they wish to remain on the waiting list for future funding. Contact: Gloria Heggy, Unit Manager, Family Assistance Program, Department of Human Services, 405 Stratton Office Building, Springfield, Illinois 62765. (217) 782-5017 or 1 (800) 843-6154, extension 3, option 1.

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/

News Clipping
Nearly $10 Million Will Be Distributed Over Five Years by National Institutes of Health

Document has been removed from http://www.pathfinder.com/

Contact: Alexandra Kennaugh Director of Community Relations, Eleanor Roosevelt Institute, 303-333-4515.

DENVER, June 15 PRNewswire — The Eleanor Roosevelt Institute has been awarded nearly $10 million from the National Institutes of Child Health and Human Development for a five year study of learning in people with Down syndrome. "This study builds upon the last fifteen years of research on the genetics of Down syndrome and is taking the first aggressive step to extend the research towards clinical applications," said David Patterson, President and Senior Fellow of the Eleanor Roosevelt Institute.
"Dr. Patterson's research team is addressing an area of research that is of high program relevance to the Mental Retardation & Developmental Disability Branch of the National Institutes of Child Health and Human Development," said Felix F. de la Cruz, Chief of the Mental Retardation & Developmental Disability Branch. The scope of the research embraces studies from the cellular level to analysis of cognitive development in individuals with Down syndrome including development and characterization of animal models of Down syndrome, biochemical studies, and molecular biological studies.
The discoveries will be used to develop therapies that will improve the lives of people with Down syndrome. These therapies may also be used in treating other forms of mental retardation and other diseases such as Alzheimers disease.
The study is a collaborative project of the Eleanor Roosevelt Institute, UCLA, University of Denver, University of Colorado Health Sciences Center, The Jackson Laboratory and the University of Arizona

  Pioneering scientists at the Institute and collaborating institutions will identify and characterize genes involved in the neurological and cognitive symptoms of people with Down syndrome. The families of the Mile High Down Syndrome Association are also supporting this effort. Down syndrome is the leading genetic cause of mental retardation in America, and is the most common chromosomal abnormality in the human population. Over 6,000 babies with Down syndrome are born in the U.S. each year, affecting boys and girls evenly. The Eleanor Roosevelt Institute is an independent research institute studying cancer, premature aging, genetic diseases, and birth defects since 1961. The Institute is founded on the belief that research is the most effective long-term approach to the eventual conquest of human afflictions.

DK Logo Dorling Kindersley Family Learning Distributors

Reading to your children is one of the best ways to help stimulate their intellectual growth. Dorling Kindersley Family Learning offers a wide variety of educational books, CD-ROM's, and videos containing stunning photography, mostly geared toward children. DK Family Learning's mission is to encourage and support the concept of the home as the center of learning an promote the development of independent learning skills.

Karen Kramer
807 Boleyn Place
Ballwin, MO 63021
(314) 227-2015

Web Wanderings
The National Information Center for Children and Youth with Disabilities (NICHY) Illinois Fact Sheet

Jack Shook, Division Administrator
Center for Educational Innovation & Reform Program Compliance
100 North First Street, E-228
Springfield, IL 62777-0001
(217) 782-5589
Gordon M. Riffel, Special Assistant to the Superintendent Special Education Coordination
Illinois State Board of Education
100 North First Street
Springfield, IL 62777-0001
(217) 782-3371
E-mail: griffel@smtp.isbe.state.il.us

Mary Miller, Bureau Chief
Help Me Grow
Bureau of Part H/Early Intervention
Dept. of Human Services
P.O. Box 19429
Springfield, IL 62794-9429
(217) 782-1981; (800) 323-4769 (in IL only)

Kay Henderson, Division Administrator
Center for Educational Innovation and Reform
Department of Early Childhood Education
100 North First Street, E-230
Springfield, IL 62777-0001
(217) 524-4835

Leigh Steiner, Associate Director
Department of Human Services

  400 Stratton Building
Springfield, IL 62765
(217) 782-7555

John Bundy, Associate Director
Department of Human Services
416 Stratton Building
Springfield, IL 62765
(217) 524-0453

Rene Christensen Leininger, Director
Illinois Planning Council on DD
830 S. Spring St.
Springfield, IL 62704
(217) 782-9696 (V/TTY)

Zena Naiditch, CEO & President
Equip for Equality, Inc.
11 East Adams, Suite 1200
Chicago, IL 60603
(312) 341-0022

Charles N. Onufer, Interim Director
Division of Specialized Care for Children
University of Illinois at Chicago
P.O. Box 19481
2815 West Washington, Suite 300
Springfield, IL 62794-9481
(217) 793-2340
E-mail: cnonufer@uic.edu

Anthony Paulauski, Executive Director
The Arc of Illinois
18207 Dixie Highway
Homewood, IL 60430
(708) 206-1930; (708) 206-1171 (Fax)
E-mail: TonyPaulauski@aol.com
URL: http://www.thearcofil.org

Down Syndrome Newsletter Articles
Daddy's Brightest Star by Pete Loftis. Reprinted from Special Delivery, the newsletter of the Down Syndrome Association of Jacksonville, Spring 1998.

On this New Year's Eve we walked out to the beach under thousands of stars. We laid on our backs, shoulder to shoulder, gazing up at the stars, telling stories.

We started a game of naming the stars after our favorite friends and family members. Tate would name several people and say, "Daddy, your turn." He selected the brightest star should be named for him. Tate conceded. He liked being the brightest star.

As a father to Tate I often wonder now if people who observe us together really understand how lucky I am to be his Dad. Do they have a clue? What do they see? Let me tell you what they would see if they were looking through my eyes.

A seven year old boy who is almost pretty, with his mother's face, sweet little eyes and a quiet confidence about him. He is a people magnet. He jumps from the school bus running with arms out screaming "Daddy, Daddy." Times spent one on one with Tate are often filled with laughter. I love his laugh.

He steps outside and says, "hi guys" to the little friends who come over to play soccer and chase each other around. Tate seems to be unaware of how small he is. His friends don't care either. They seem to allow him to be the boss in his own yard. The activities circle around him as he directs the soccer drills. He does not tolerate fooling around while playing soccer - everyone must focus.

Homework is done with great diligence. The computer is his friend. He is an excellent listener who constantly strives to improve. Reading, writing and counting are fun to practice with a positive attitude and enthusiasm.

  The yellow belt in karate and trophies in soccer are not as important to him as the relationships he develops with other kids. He enjoys hiking in the woods, riding on the golf cart, making two-foot putts on the practice green with his sawed off putter. We spend endless evenings kicking the soccer ball, throwing the football and running on the beach with the dogs.

When he says "morning" every day starts off on a positive note. When I read him a story at bedtime and we say the Lord's Prayer, every evening ends with an innocent sweetness. Sometimes I lay beside him and watch him sleep.

Tate instills great confidence in me. In his opinion my singing is a work of art. My jump shot is as good as any Chicago Bull. Every fish I catch is big. Every cheese egg I cook is superb. When my seven iron slices into the water he is undeterred, saying "what happened Daddy?" as if a sudden gust of wind blew the ball in the water. There's no wonder why he is my best friend.

When Tate was born I comforted his Mom and pretended to be as proud as any new father would be. My father told me soon after Tate was born, "son, you must be very proud to have this little boy." I really wasn't but pretended to be. Tate is seven now and I quit pretending many years ago. A good friend told me this child was given to us for a reason. What did they see that I didn't?

There are many things I would change in my life if I could do it all over again. Tate is not one of those things. He is my brightest star.

Father's Journal
Third Base Coach
Our speech therapist assessed Emmanuel, but did not know that he could identify several body parts, in English and Spanish. She readily agreed to change the assessment. "Well, that was easy", I thought, but only because my son was frantically trying to keep up with me as I listed the body parts he knew, tugging his ears, tapping his head, pointing to his belly button.