April 1998 Issue

We would like to thank Larry Lock, of The Dignity Group for his talk on life planning, as well as Trish Vaughn and Mary Tanner of the William BeDell Center (ARC) for the use of their facilities, supplying the snacks and beverages and providing baby sitting to our children.
I would like to announce that I have taken additional responsibilities: Associate Editor of the periodical, People with Special Needs/Down Syndrome Report (complimentary copies of the May 1998 issue are available by calling (618) 208-1659) and member of the board of directors of the Greater St. Louis Down Syndrome Association.

STARnet Illinois Region IV Workshops
July 20. 9:00 - 11:30 a.m. Early Identification and Intervention of Hearing Loss. The presentation will include recent research findings regarding speech and language outcomes and cognitive performance of babies whose hearing loss was identified before the age of three months where intervention occurred before the age of six months. Presenter: Kimberly K. Ott, M.S., CCC/A, F/AAA. Shrine of Our Lady of the Snows, Belleville, IL.
July 20. 12:30 - 3:00 a.m. What You Need to Know about Young Children's Vision. This presentation will address the importance of vision in the pediatric population, methods of detecting a vision deficiency and how vision deficits may affect a child's development. Presenter: Dr. Lisa B. Dibler. Shrine of Our Lady of the Snows, Belleville, IL.
For information on either workshop contact STARnet at (618) 397-8930 pril 3. 9:00 - 3:00, St. Claire County Regional Office of Education, Belleville, IL. Oral Motor Issues in Feeding Young Child with Special Needs. Presenter: Beth A. McEnvoy, M.A., CCC-SLP. Description: Oral-motor training improves the efficiency of the oral mechanism for speech and feeding. The relationship between feeding in the young child and speech development cannot be ignored. Children with difficulties in the area of feeding are at risk for speech and language delays. Information and techniques to target oral-motor stimulation when working with medically fragile infants (both oral feeders and non-oral feeders) to facilitate nutritive intake as well as stimulate speech production will be provided.

Regional Events
May 11-12. 14th Annual Conference and Assistive Technology Exposition. Springfield, IL. Contact: Coalition of Citizens with Disabilities in Illinois (800) 433-8848.

May 12. 9:00 - 12:30. Strategies in Augmentative Communication. Presenters: Pat Politano and Kary Hooyenga, University of Illinois - Chicago. Hosted by: ARC of Rock Island County, 4016 Ninth Street, Rock Island, IL 61265. (309) 786-433, Fax: (309) 786-9861. Contact: Jenny or Carolyn.

July 9-11. 1998 National Down Syndrome Society Conference, The Future is Ours. Lake Lawn Lodge, Delavan, WI. Registration fees: Parent: $275; Two parents: $500. Registration deadline is June 19, 1998. Workshops: Parent, Professional, Young Adult & Sibling. For more information contact:

666 Broadway, Suite 810
New York, NY 10012-2317
(800) 221-4602 or (212) 460-9330
E-mail: info@ndss.org
URL: www.ndss.org

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.

Little Grassy Lake Summer Camp. Week long camping sessions for adults and children with developmental disabilities begin June 7 through August 7. Co-sponsored by The Touch of Nature Environmental Center and the Southern Illinois University. For information contact Camp Little Giant Registrar, Jerry Konkel, Program Coordinator, 453-1121.

June 1 - July 1. Play Pals six-week day and evening sessions for three age groups: 3-12 months; 12-24 months; and 2-3 years. Fee: $30. Location: Saint Anthony's Wellness Center, Alton Mall. June 17 - July 8, 3:00 to 4:15 p.m. Special Pals is a structured play group design for children ages 3 months to 48 months with developmental disabilities. Fee: $35. Location: Saint Anthony's Wellness Center, Alton Mall.
To register of for more information, call 463-5340.

News Clippings
Loving Emily by Mary Wilt, Woman's Day, March 10, 1998. Copyright © 1998 Mary Wilt. Reprinted with the permission of the author.

I could talk forever about my 7-year-old daughter, Emily. She is unique, a marvel, like any child. And a joy to be around, except when she terrorizes our cat. Or raids her big sisters' drawers. Or sneaks downstairs in the morning and blasts her beloved Nickelodeon, waking up the whole family.
She possesses a rare sense of humor. Stuck in the line at a fast-food drive-thru recently, I became more than a little peeved. Emily watched as I nervously tapped my fingers on the steering wheel and rapidly changed radio stations. "Mom, were you born crazy?" she asked.
When I took slight offense at this remark, she crossed her little arms over her chest, sagely nodded her head and said, "I rest my case." Somehow, the wait seemed less tedious after that.
It there is such a thing as an ordinary child, Emily is one. She just happens to have Down syndrome. Beside me as I type sits a little human being with an extra chromosome in each cell of her body. All of us-all of us-have some genetic anomalies, most so minute as to be of no consequence. From the moment of conception, Emily had this extra genetic material influencing her growth and development. Yet, these differences do not include anything that should warrant her exclusion from the human race. The American College of Obstetricians and Gynecologist recommends that certain pregnancies be "screened" for abnormalities, including; Down syndrome. As a result, more and more fetuses with Down syndrome are being identified and aborted each year. But the syndrome is not, in itself, severe enough to warrant such outrageous screening, with the subsequent weeding out of individual lives before they are born.
I've seen a few of the pamphlets that are routinely given to women who receive the prenatal diagnosis of Down syndrome. The cold, sterile checklists of symptoms include mental retardation, heart defects and hearing problems. While the clinical descriptions are true, they don't actually describe a living, breathing person. It isn't possible to contain a soul in a tri-folded piece of paper.
Does Emily have mental retardation? Yes. Does she have heart defects and hearing problems? Yes. You can check off most of the symptoms from any of those pamphlets. But none of those problems define Emily or even hint at her essence, her personhood, her humanity. That is the danger of one-dimensional information.
Yes, Emily is delayed in most areas. She doesn't learn in the same way, or even in the same order, as my other two daughters. But learn she does. At age 7, she is part of a regular first-grade classroom. She prints her name and letters. She counts to 100. She reads a few words. Most children with Down syndrome will learn to read and write. Emily does look different. She is very cute: blond hair, blue eyes and a winning smile. But there is no mistaking the fact that the extra chromosome has worked its spell on her facial features.
None of these differences interfere with her relationships with others. In fact, she possesses a little extra feeling for her fellow human beings. Once I found her in the time-out corner at her after-school program. I was pleased, if puzzled, to learn that she had done nothing wrong. She just felt sorry for a little boy who had, and decided to join him for the duration. Her arm around his shoulder, they talked the time-out away.
Of course, life with a child with Down syndrome is not always easy, and not always fun. But mother to mother, I ask you: Is life with any child without heartaches and pain? Yes, we have had extra work in raising this child. We have also had extra joy.
Emily is a sister, a friend, a classmate. Her presence among us is benign. What a sad world it would be if all the little ones with Down syndrome were not allowed life. A world with no Emilys. A much sadder world, indeed.
Last night, I indulged in that peculiar parental ritual: I watched my child sleep. I brushed her hair back from her forehead and she awoke briefly. "Mommy," she whispered, and then, secure in the knowledge that I was there, she quickly fell asleep again. And I thought, yes, that's the meaning. That's the totality. She is alive and I am Mommy.

Editor's Note: We open this page to opinions everyone can learn from, even if we don't always agree.

Down Syndrome Newsletters Articles
Reprinted with permission from Down Right Active, April 1998, the newsletter of the Tidewater Down Syndrome Association: Views from Our Shoes. A book review by Kevin Todd.

In the book, Views from Our Shoes, brothers and sisters who have siblings with disabilities tell about the disability and how it makes them feel to have a sibling with special needs. These stories involve all different types of disabilities. Some are very serious and some are not. I was especially interested in the kids who had brothers and sisters with Down syndrome because my brother, Stephen, has Down syndrome. I learned that it is okay to have a brother with special needs and that it is even okay to feel like your brother or sister can be a brat. There are so many with disabilities but people still can be mean and make fun of them. This shouldn't happen because people with disabilities have feelings just like you and me. If you have a brother or a sister with a disability, I recommend this book to you because you will feel better to know your feelings about your sibling are normal.

Kevin Todd, age 8, attends Thoroughgood Elementary in Virginia. Beach, VA, grade 3. He is the brother of Stephen Todd, age 7, and Austin Todd, age 4.

Web Wanderings
Saint Anthony's Health Center: http://www.sahc.org
The Sibling Support Project: http://www.siblingsupport.org is a national program dedicated to the interests of brothers and sisters of people with special health and developmental needs.

Father's Journal
One cold winter day in the hospital I showed Emmanuel the sun, he acknowledged the glare by squinting his yet to be opened eyes. Emmanuel humors his father a year later by engaging in symbolic play: he knows George can not clap, but willing to please his father, assists George hand-over-hand to midline. George is hypotonic and made of yarn.