March 1998 Issue

Our next meeting will feature 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. The meeting will be held on Friday, March 27th at 6:00 p.m. at the William BeDell Center (ARC), 400 South Main, Wood River, IL. For further information and to reserve free baby sitting services contact Trish Vaughn at (618) 251-2175. Refreshments and snacks will be provided. The presentation is open to all parents and relatives of a disabled person.

Our last meeting's menu was:

Appetizer: Empanadas de cazón (shark quesadillas)
Main course: Moroccan cous-cous
Dessert: Walnut baklava.
Following is Linda Orso's synopsis of her talk:
I presented some background on my family and myself. Joe and I have 3 daughters: ages 25, 20 and 18. Lydia, our 20 year-old, has Down syndrome. I was involved in the National Association for Down Syndrome (NADS) in the Chicago area for about 15 years, served on the Board of Directors for 13 years, was trained as a parent support volunteer, a public awareness speaker, and as an educational consultant for parents with children who have Down syndrome.
I offered some strategies for dealing with various obstacles that I have experienced with Lydia over that last 20 years. Such things as becoming a part of the "team" at school--child, parent and teacher team--offering to help out when and where I could, keeping my community informed about Down syndrome by making sure the public library had current brochures in their "vertical" file. I shared several bibliographies and suggested that parents go to their local libraries and make sure the books that they see as important on those lists are available through the library and if not, suggest or request that they purchase them--and then check them out, so that they are circulated. I suggested donating books for your child's school--either for their classroom or for their school library. A good gift for the teacher at Christmas is a subscription to a Down syndrome newsletter that you like. I gave away materials such as posters, lists of all Internet sites that are of interest to us, brochures, pamphlets, booklets, etc. and brought several books so parents could take a look at them. I talked about how I thought that we need to proceed with inclusion cautiously--and to realize that what we want for our children is the freedom of choice--and that what might be a good option for my daughter may or may not be good for someone else's child. Many parents of younger children feel "peer pressure" from other parents to insist that their child is included in all classes. Inclusion is not for every child--and not for every family--and not the best choice in every school situation--and some schools are better prepared for this than others. We, as a support network for each other, should not judge other parents' decisions, but instead, we need to be supportive of each other's decisions. I personally value the special services Lydia received and encourage parents to allow their children to receive services and not deny them that help. I encouraged parents to make several observations of their child at school - and to call ahead and schedule these observations as a courtesy to the teacher and also to make sure that they are doing something that you want to see - and not, for instance, going to an assembly. Trying to be cooperative and a contributing team member has helped us in providing Lydia with the best educational environment that was available at whatever school she attended. I answered several questions, and then passed out some of the information that I brought.

STARnet Illinois Region IV Workshops
March 31. 9:30 - 3:30, St. Claire County Regional Office of Education, Belleville, IL. IFSP Training. Presenters: Ellen Becker and Sharon Gage. Description: Illinois' Individualized Family Service Plan document will be reviewed for content and any update changes. It will also include exercises on completing sample outcome pages for IFSP.

April 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
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.

March 27. Inclusive Education, Belonging and Believing. Featuring Norman Kunc. Sponsored by the Heart of Illinois Down Syndrome Association. Location: Illinois State University in Normal, IL. For more information, contact HOIDSA at (309) 444-2508 or e-mail:

The Down Syndrome Association of Greater St. Louis and the Special School District of St. Louis County in cooperation with the St. Louis University, Department of Communication Disorders present the 1998 Annual Conference: Communication and Down Syndrome, featuring Libby Kumin, Ph.D., CCC-SLP.

For more information call (314) 961-2504.

May 6-8. The Arc of Illinois Annual Convention, Putting the Person First: Creating a Future for All. Clock Tower Resort, Rockford, Illinois. Keynote speakers:

For more information call The Arc of Illinois at (708) 206-1930.

News Clippings
Special Addition by Leslee Williams, American Baby, March 1998, p. 32-38.

Nothing prepared Wendy Bennett for the tidal wave of emotion that crashed over her following the birth of her daughter, Emma, three years ago. Wendy's pregnancy seemed normal. None of her prenatal tests indicated any of the problems commonly associated with Down syndrome, but right after the delivery, hospital staff took her husband out into the hallway to talk with him. "Emma was taken away so they could run tests, but I had seen her eyes," Wendy, 34, a mother of three in Knoxville, Tennessee, recalls. "The nurse leaned over and said, 'You know, don't you?' I just started crying.
Of all the emotions Wendy experienced after Emma's birth, the one that was missing was love. Wendy did not feel a rush of love for Emma the way she did when her other children were born. "I couldn't touch Emma. I was scared to," says Wendy. "I thought if I touched her, then her disability would be real. I wondered what we had done to make God punish us like this. It even flickered through my mind that there must be someone else out there better suited to raise this child than me."
While Wendy struggled with her fear of Emma's disability and guilt because she couldn't bond with her, Wendy's husband, Gary, wondered if his daughter would ever drive a car, go to college, or find a job. Friends advised him to set smaller goals and enjoy having a child, instead of wondering what would happen 20 years in the future. "I was trying to picture Emma's whole life instead of focusing on her immediate need, " Gary says. "Then I realized what I needed to do," He visited the nursery, frequently stroking Emma's cheek and telling her, "It's all right. Mommy will come around soon."
It may take many months for you to truly accept your child's disability. Therese DiVita, from Rockville, Maryland, remembers the heartbreak and frustration she felt watching her son's delayed development due to Down syndrome. "Unlike other 6-month-olds, I couldn't put a toy near Chris and expect him to pick it up and play with it," she says. "It wasn't just Chris' physical delays that were hard to watch. He simply showed no interest in exploring his environment."
Therese had to get right in Chris's face to make him react to her, and the effort it took to constantly engage him was draining. Yet a Chris grew in his unique way, Therese began to see that he was like other babies. "He did smile and did eventually recognize me, his dad, his brother. He did eventually laugh. It just didn't happen at the same time it did for other children. I started to let go of what Chris couldn't do when I began to see what he could do," says Therese.
"Evaluations are hard," says Noel Trim, 25, whose son has Down syndrome. "Zachary is 3, and when an expert evaluates him at an 8-month-old level for talking, it breaks my heart because he is not acknowledging the thing Zachary can do. So I make it a point to tell the doctor that if he doesn't want to make me cry, he'll have to mention the positive things as well."
Wendy Bennett remembers a church service when Emma was 6 months old. A woman sitting a few pews ahead was holding a baby who was about Emma's age. The baby was bouncing up and down in his mother's lap - something Emma couldn't do yet - and Wendy started to cry. "You have to cry at those kinds of setbacks," she says. "But you need to face them head on and move forward. Every time I have a pitfall, I talk to a friend, and they point out all the good things about Emma, which helps me see the positive again."

Play Pals. Eight-week session: March 23 to May 11. Location: St. Anthony's Wellness Center, Alton Mall. Various day and evening sessions for three age groups:

Fee: $40.00. To register or for more information, call 463-5340

Down Syndrome Newsletters Articles
Unexpected Visitor by Natalie Hale.
Reprinted from the D.S. Press, Volume XVII, Issue #4, March/April 1998, p. 9, the newsletter of the Down Syndrome Association of Greater Cincinnati.

     I settled back against the hospital pillows. Flower arrangements crowded the bedside table, and I couldn't help wondering when life had become so amazingly beautiful. I had gotten some sleep; my husband, Kelly, had gone to run some errands; and the baby we'd prayed for was now a full day old. I had everything I wanted.
     I'd always dreamed of having a blond, blue-eyed baby boy. Kelly and I decided we would name him Jonathan. But years passed and I didn't conceive. When doctors couldn't pinpoint a reason, we just gave up. We got two cats, named them Goodness and Mercy, and tried to see God's plan for our lives.
     Kelly and I were ecstatic when after 12 years of marriage I became pregnant. And now the baby of my dreams, our Jonathan, was with us at last, sleeping in the hospital nursery right down the hall from my room.
     A soft knock at the door kept me from drifting off to sleep again. My nurse-midwife, Ann, came in. She had coached me through every minute of yesterday's difficult delivery. A man I didn't know followed her and shut the door. "This is Dr. Weiss, the pediatrician assigned to Jonathan," Ann said quietly. They pulled two chairs up to my bed and sat in silence for a moment before the doctor spoke. "Jonathan doesn't have any problems at birth, but there's something else." After an awkward pause Anne's eyes met mine, then she looked at Dr. Weiss. "Jonathan has Down syndrome," he told me.
     "Are you sure?" I asked, stunned. They nodded. I turned away and looked at the flowers again, bright and open-faced, catching the sun streaming in from the window. This wasn't part of my dream. This wasn't what I had envisioned. With one brief diagnosis the picture I had carried with me of our family-to-be was drastically altered. I began to weep.
     "Natalie," Ann coaxed gently, "someone else wants to see you now, but we'll be back to talk some more." Ann and Dr. Weiss left. I wasn't expecting any visitors, but I was relieved someone had come. The last thing I wanted at that moment was to be alone.
     The door swung open. There stood Father Ed Brueggeman, his clear blue eyes reassuring, his head crowned with a snowy-white swirl of hair that nearly touched the doorframe. Just the sight of him brought a smile to my lips.
     I had known Ed for a long time, but only as an acquaintance through a mutual friend. Maybe she had told Ed we were expecting, but we hadn't had a chance to tell her Jonathan had been born. What was Ed doing here now? We didn't go to his church; we weren't even of his faith.
     Ed strode to my bedside, cupped my hands in his and sat down. "Remember, Natalie, with God, nothing is impossible," he said with an unshakable smile. "The Lord knows, and I know - and so will you - that great good will come of this."
     Ed spent nearly an hour with me that day, holding my hand, telling me about the remarkable things he had seen happen to people who held tight to faith, hope and love. I tried to absorb his every word. I would need to repeat them for Kelly, and need to believe them myself, forever.
     Ann told me afterward that Ed had come to my door when she and the doctor were preparing to tell me Jonathan's diagnosis. They confided in him and asked him to wait while they talked and gave me support.
     "But how did he know to come in the first place?" I asked Ann. "He didn't know, Natalie," she said. "But Someone did."
     When Kelly came back that afternoon we held each other. Then I cradled Jonathan in my arms, his blond hair and blue eyes reminding me that this was the child I had dreamed of for years. My baby in my arms and Kelly by my side - this truly was all I ever wanted.
     Our road was still uncertain, but I knew God would be with us, just as Ed has been with me during those crucial moments. I remember that today, watching my bright and creative 12-year-old playing his drum set or reading a book with his 10-year-old sister, Rebecca.

Web Wanderings
The Beach Center positive behavioral support page:
For a free subscription to Families and Disability, published three times a year, send name and address to:

Beach Center on Families and Disability
The University of Kansas
3111 Haworth Hall
Lawrence, KS 6604-7516
Fax: (785) 864-7605

Father's Journal
My son looks like me
The recognition started slowly: those eyes, just like my baby pictures. I see myself in my son every day. Emmanuel is a beautiful baby, more so than his father, who happens to have a son with Down syndrome.