May 1998 Issue

Our next meeting will be held on Friday, June 12th, at 6:30 p.m. and the following videos will be shown, featuring Professor Sue Buckley from the University of Portsmouth, U.K.:
Understanding Down Syndrome - Learning to Talk
Explains the available research on language learning difficulties of children with Down Syndrome. Discusses how children learn to talk, why children with Down syndrome usually have difficulties and the implications of the research for remedial approaches. The presentation is illustrated with examples of children with Down syndrome at different stages of development.

Understanding Down Syndrome - Learning to Read
Explains the research on reading development in children with Down syndrome, much of it carried by Professor Buckley and her colleagues since 1980. Teaching methods are illustrated by children with Down syndrome.

Children are encouraged to come and are most welcome. Home-made pizza will be served for dinner and the meeting will be held at the home of the Mitchells.

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.

Regional Events
Gene Stallings, author of Another Season: A Coach's story of Raising an Exceptional Son will be in St. Louis on June 1, 1998 at a book signing at Barnes & Noble Crestwood, 9618 Watson Road, St. Louis, MO 63126. Coach Stallings will be available to sign books from 7:30 p.m. to 8:30 p.m. Stallings' book is now available in paperback for $12.00. Barnes & Noble has generously offered to host a book fair benefiting the Greater St. Louis Down Syndrome Association from 6:00 p.m. to 9:00 p.m. that night.

NDSC hosts its 1998 National Conference in Dallas, Texas August 7-9 at the Hyatt Regency at Reunion. For travel information contact Janis Silverman at Glyndon Square Travel, 1 (800) 875-9685. For details on the conference, contact NDSC at 1 (800) 232-NDSC.

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 Arc of Illinois - Today, March 12, 1998. Effectiveness of Early Intervention for Vulnerable Children: A Developmental Perspective is available by calling The ARC of Illinois, (708) 206-1171.

An inclusion study is available from the National Down Syndrome Society, include $10 to cover postage and handling:

NDSS Educational Challenges Program
666 Broadway, 8th Floor
New York, NY 10012-2319
1 (800) 221-4602

Summer 1998 Kids 'N' Computers. Courses for Kids in Preschool through Grade 8. For more information and registration call Debbie Doering at (314) 516-6793. Fees: $49 per class. Locations: University of Missouri-St. Louis North Campus: 8001 Natural Bridge Road, 121 J.C. Penny: Monday - Thursdays July 20 - July 30. and West County Computer Center: 1715 Deer Tracks Trail, Suite 100, St. Louis, MO 63131: Mondays - Thursdays July 6 - July 16 and August 3 - 13.

Summer Camps at the Symphony Music School. Call (314) 863-3033 for details. Kindermusik Camp: ages 3½ to 6: July 20-24 and 27-31. Symphony Camp for Kids: 1st - 5th grade, July 6-10.

Special Pals is a structured play group designed for children with special needs. Special Pals provides an opportunity to facilitate development of gross and fine motor skills for all participants. Parents or caregivers are active participants in the program and benefit from this interaction with their child as they take part in the various developmental activities offered at Special Pals.
     Session One: Ages 3 months to 48 months, Wednesdays, June 17 - July 8; 3 to 4:15 p.m.
     Session Two: Ages 4 to 8 years old. Wednesdays, July 22 - August 12; 3 to 4:15 p.m.
Classes are instructed by Saint Anthony's Health Center, Alton Square Mall. Fee: $35. For more information or to register call 463-5340 or to speak with Jenny Norton, Pediatric Therapist, call 462-2222.

Small Fry Preschool Story Time. Preschool story times for ages 3-5 are held on Tuesday and Wednesday mornings at 9:30 a.m. Program dates for the summer sessions are June 16/17, 23/24, 30/July 1, 14/15, 21/22, 28,29. Programs include stories, songs, rhymes, movement activities, puppet shows and videos. Contact The Hayner Public Youth Library at 462-0652.

News Clippings
Close to Home by Barbara Curtis. Novato Advance June 25, 1997. © 1997 Barbara Curtis. Reprinted with permission of the author.

     "It's a three-hankie event." I told my husband, Tripp, the night before Jonathan's graduation. Maybe I underestimated. Based on my performance the next day, I'm fairly confident that if there were an Olympic commencement crybabies event, I'd capture the gold for Novato.
     From the first strains of the processional-Kermit the Frog singing "Why Are There So Many Songs About Rainbows?"-my composure was kaput. The dozen or so Special Ed Preschool graduates appeared in tassel-swinging caps to the oohs and ahs of parents and friends, then bounced, shuffled-or were coaxed and prodded-down the aisle to their places of honor. There were no wheelchairs this year, but that didn't take away the overwhelming sense of watching "Miracles in the Making."
     I couldn't look at the other parents. I would have needed a periscope, I was so awash in tears and feelings. And that in itself is a miracle. I never was the mushy sort before I had Jonathan.
     But that's what life with Jonathan has been all about. Having a child with Down's syndrome has brought out the human in me. He's revealed to me these incredible secrets hidden from me for 44 years: That life is about more than intelligence or appearance. That the greatest gifts are not the kind you can measure or quantify. That until our hearts are stretched and tenderized, there are truths we'll never know.
     I guess that's the saddest part for me, knowing that nine out of 10 prenatally diagnosed Down's syndrome babies perish in abortion. To think anyone would see a child like Jonathan as a tragedy is almost beyond my comprehension. Yet our culture is schizophrenic where these children are concerned: mandating that they be treated with dignity in schools and workplaces while still encouraging us to get rid of them before they are born.
     I understand the shock and grief parents feel on getting the "bad news." I only wish I could sit beside them and hold their hands and them how much Jonathan has meant to me. Like the line from Elton John's "Your Song": "I hope you don't mind, I hope you don't mind that I'm putting down in words/How wonderful life is while you're in the world."
     You see, at first I thought that having a child with special needs was all about helping him reach his potential. But it hasn't been that way at all. It's really been about me reaching mine.
     This has been brought home to me even more since our move to Petaluma. Entering a very small and close-knit rural school district with a child slated for full inclusion in kindergarten, I was painfully aware of the financial burden-not to mention the planning and logistical concerns-I was bringing to Liberty School.
     How would other kindergarten parents feel about Jonathan being in their child's class? Would they see it as a drag? Would they fume because his special needs might detract from their children's school experience? My anxiety loomed like a trap waiting to catch me in the dark.
     And then there was light-a revelation. For the first time I truly understood why we are making it possible for special needs kids to be educated with their "normal" peers. Yes, looking at dollars and cents and hours and minutes, a lot of people judge full inclusion at best an intrusion, at worst a waste.
     But that's not what it's all about.
     Because Jonny and his graduating friends are not just taking from their classmates and teachers, their families, their communities, nor even from society at large. They each have something unique to offer; something that will enrich the lives of everyone who knows them.
     Suddenly I had this confidence in my son. I knew beyond a doubt that Jonathan's kindergarten class would be the better because he was part of it.
     And I was reminded of an event described in the Bible: Cynics presented a blind man to Jesus and asked him who had sinned, the man or his parents, that he had been born blind. Jesus answered that neither had sinned, "but this happened so that the work of God might be displayed in his life." (John 9:1-3 NV)
     I suppose most people have understood that to mean that the work of God would be displayed when the blind man was enabled to see. I disagree. After all, Jesus didn't say the work of God would be displayed in the blind man's healing. He said it was displayed "in his life."
     That blind man was once a baby and a growing boy. For years his needs had an impact on his family, his friends, his teachers, his community. Surely the work of God was being revealed each day in the growing compassion and wisdom in those who might otherwise have remained stuck in their own superficiality and self-centered-ness.
     Is it worth the extra time, effort, and money to educate special needs kids? I think of another thought-provoking verse: "Those parts of the body [read: community] that are weaker are indispensable, and the parts we think are less honorable we treat with special honor." (1Corinthians 12:22-23)
     We may never understand all the reasons. And we will certainly never be able to quantify the results. But I know as surely as I know each dimple on Jonathan's cheeks: by committing ourselves to help these children reach their potential, we are better able to reach our own.

     Novato Sunny Side Up Award to Marilyn Dolce Davis, Jay Sampson, and their assistants, who spend their days lavishing love on children some might find difficult to care much about. These teachers are a source inspiration, strength, and common sense to the families they have faithfully served.

Down Syndrome Newsletters Articles
Establishing the Basics for Effective Discipline by Patty Purvis, Ph.D. Reprinted from Connections, Vol. 3, No. 4, Fall 1997. Down Syndrome Guild of Greater Kansas City.

The developmental and child psychologist on the team for Down Syndrome Clinic is available to talk with parents about many issues regarding their child's behavioral development including such topics as toilet training, tantrums, or general non-compliant behavior. Often the topic of discipline comes up. Many parents think of "punishment" when they hear the word "discipline." However the first definition for "discipline" listed in Webster's Dictionary is "training that develops self-control, character, or orderliness and efficiency " Two necessary skills to help any youngster succeed are the development of their ability to communicate and their ability to attend to and comply with appropriate commands from people who try to teach them. Additionally, parents often think that behavior management doesn't begin until the child is six months or a year old. But if we think of discipline as a "training", it should begin at birth.
To become a teacher for their child, parents must develop a relationship and close attachment. The tone of that relationship can be developed very early. Infants respond to eye contact, facial expressions, tones of voice and gentle touch. Most infants thrive on cuddling, rocking and/or mild massage on their back, arms and legs. Early on, it is important for parents to monitor when they provide this kind of attention. If a parent only provides those special times of "attention" after their child has started to cry, the infant learns to cry more often to get that wonderful stimulation. If parents provide eye contact, touch and verbal attention frequently when their baby is "happy", the learning process becomes more rewarding for both. By timing positive stimulation when parents and baby are happy rather than "cranky" results in a baby who cries less frequently, therefore exploring their environment and learning more from it.
A good motto to establish early is "pick up a happy baby." That may mean missing those last few moments of sleep in the morning before a baby starts screaming, but it is well worth it in the long run. Think about how much more we all learn under positive circumstances when our surroundings are less charged by crying. Of course that doesn't mean a parent would ignore a crying baby during other parts of the day. However, if a parent knows their child is clean, fed, safe, and dry, but just fussy, waiting to pick up the baby until he has quieted will give the child a different message about how to get attention. As a child gets older, a rich environment will have been established for reinforcement of "okay" or "appropriate" behavior. The child will also have learned the value of eye-contact and calm voice tone. Then when parents begin to use the word "no", and remove their attention from their child in the form on a "time out" they will have established a powerful teaching tool giving a non-verbal message that the child has made a poor "choice."

Web Wanderings
State Board Candidate Sets Out To Defy Expectations by Joetta L. Sack
Document removed from

When Nannie Abbey Marie Sanchez was in school in her hometown of Albuquerque, N.M., some people told her she had a choice of only three careers: fast-food worker, janitor, or "planting flowers." Ms. Sanchez defied those expectations and recently became the first person with Down syndrome to graduate from a business-administrative-assistant program at a local community college. Now, she wants to improve educational opportunities for other students with disabilities. On June 2, the 23-year-old will compete in the Democratic primary for one of three open seats on the 15-member New Mexico board of education.[...]

Father's Journal
First Steps
Emmanuel has size 4 walking shoes, high tops providing ankle support. They are white, with the primary colors as eyelets and the first letters of the alphabet on the soles. The heels have reflectors so mankind won't run him down.