Riverbend Moonlight Newsletter August 1997 Issue

August 1997 Issue

The Riverbend Down Syndrome Association's first annual picnic will take place at Homer Adams Park on September 14, and in case of rain, on September 21. Homer Adams Park is located behind the Godfrey Township-Village Hall at the junction of routes 67 and 267. Starting time is at 2:00 p.m., and we will start to eat about 4:00 p.m. Hot dogs, hamburgers, buns and condiments will be provided. Each family should bring plates, cups and utensils, drinks for themselves, and a dish to share. We encourage all families to attend. For more information, call Eric and Loretta Tuegel, event organizers.

STARnet Region IV Workshops
September 19. Let's Talk about Curriculum for Infants and Toddlers! Regional Office of Education. Presenters: Lisa Fisher and Pat Kluzik Stauch. For additional information call (618) 397-8930, extension 166.

Regional Events
Buddy Walk 97. Sunday, October 19th, 1:00 p.m. Queeny Park.
Join the families, friends, and sponsors of the Down syndrome Association of St. Louis for the 2nd Annual Buddy Walk to raise awareness and promote advocacy for all people with Down syndrome. Last year more than 8,000 people from around the country participated in 37 walks. Food and refreshments will be provided following the walk.
Mail in registration. Individual: $5.00. Family: $15.00. Make check payable to: DSA St. Louis

DSA - Buddy Walk
14974 Lake Manor Court
Chesterfield, MO 63017

News Clippings
The Choice I'll Never Regret by Mary Ellin Barrett. Redbook, August 1997, page 87, 110. We're Not Perfect, But Who Could Love Her More?
Mary Janiczek had been a special education teacher, but no training could prepare her for the news that her unborn daughter had Down's syndrome. "I might as well have had a degree in ditch digging, I felt so inadequate," recalls Janiczek of the painful phone call from her doctor that came 11 years ago when, at age 38, she was expecting her second baby.
[...] Janiczek and her husband didn't want to terminate the pregnancy. "Still, we felt totally unprepared to take care of this baby," says Janiczek, who lives in Wheaton, Maryland. "I had visions of her being totally dependent and in diapers forever. And I worried that my older daughter, Katie, who was then 1½, would always have to take care of her." After weeks of soul searching, the Janiczeks decided to place their unborn daughter up for adoption. "It killed us, but we felt it was the right thing to do. We didn't think we could handle the situation."
[...] But Jankczek wasn't prepared for what happened when her baby arrived ten days early after an easy three-hour labor: "She was beautiful, she was my little girl, and I loved her."
Paul [her husband] and she held the baby, hugged her, and posed for pictures. "I felt horrible," says Janiczek. "I wanted to keep her but I felt that we had made this decision and we should stick to it. I was fighting my natural instincts."
Janiczek did have another option. The couple could dissolve the arrangement; the decision wouldn't be final until they gave the go-ahead. "That night, I told Paul, "You know, I really could take care of her," recalls Janiczek. "'She's beautiful, she's healthy. In my gut, I know I can do this.' And Paul said, 'I know I can do it too.' Then I looked at him and said, 'Shall we go to bed and pretend we're going to think about this or shall we just admit we're going to keep her?' He just laughed."
The next morning, Janiczek called the adoption liaison, who had the baby at her house. "I know you pick up babies," she said, "but do you deliver?" The woman replied, "No, you're going to have to come and get her yourself."
"When I saw Paul walk in with her I was ecstatic," recalls Janiczek. "We might not be perfect at this, but who in the world could love her more?" They named the baby Susan. Janiczek was happy to discover that Susan, now 11, didn't have any of the problems such as heart defects, cataracts, or digestive ailments common to Down's children. Still, she appears to be more susceptible to serious upper-respiratory infections.
[...] Janiczek says she never feels guilty for considering adoption: "I don't beat myself up about this because I know the stress we were under." But there has never been a minute where she regretted keeping her. "She's very brave, and she has a joy for life. She's also very turned in to other people's feelings, and when someone's having a rough time she makes a point of giving then love or attention or drawing a picture for them. When I look at her, I say to myself, I am lucky, I am grateful."

Resources
The University of Illinois at Chicago, Division of Specialized Care for Children (DSCC).
The Illinois DSCC helps children with special health care needs find a future. DSCC works to help children with disabilities, and those who have conditions which may lead to disabilities, reach their full potential. By helping to provide proper specialized care, DSCC assists children to grow and develop to the full extent of their abilities.

Who does DSCC help?
Any Illinois child from birth to age 18 may qualify for no-cost diagnostic services if it is suspected that an eligible medical condition exists. DSCC also can provide financial assistance if the child has an eligible medical condition which can be improved through medical treatment and the family needs help to afford the treatment. To find out if you child is medically or financially eligible, call:

East St. Louis Regional Office
State Regional Office Building
#10 Collinsville Avenue, Room 102
East St. Louis, IL 62201-3005
(618) 997-4396
TDD: (618) 875-3902

For general information call toll free: 1 (800) 322-3722.

Now does DSCC help eligible children?
DSCC offers services that include reduced cost or no-cost diagnosis and treatment in an office, clinic, hospital, or other special treatment area. When physician specialists recommend them, DSCC provides braces, hearing aids, and other special equipment and services. DSCC staff works with the child's family, physician specialists, and other service providers to develop the most appropriate program for the child.

How do I apply for help for my child?
Call your nearest DSCC office and request application forms. The application forms will ask you to provide financial and health care information about your child and family. Both the financial information forms and the medical reports must be completed and reviewed by a DSCC consultant before DSCC can tell you whether or not you qualify.

The Children's Swim Program at Lewis and Clark Community College provides safety training for young people between the ages of six months and 16 years. Classes meet on a variety of time schedules in order to accommodate today's busy families. Children advance to higher levels of training as they demonstrate competence in basis skills. Small classes allow opportunities for individualized learning. All classes are held in the Olympic-sized pool located in Hatheway Cultural Center, on the main campus.
For more information, call 467-2332. To register, call 1 (800) 500-LCCC or 467-2222.

Down Syndrome Newsletters Articles
Editor's note: this story first emerged early in the 1990's in the Seattle area. The Washington Special Olympics, based on research with staff and volunteers dating back to more than fifteen years, has been unable to identify the author, anyone who actually witnessed the event or captured it on tape.

What's Really Important

A few years ago at the Seattle Special Olympics, nine contestants, all physically or mentally disabled, assembled at the starting line for the 100 yard dash. At the gun they all started out, not exactly in a dash, but with the relish to run the race to the finish and win. All, that is, except a boy who stumbled on the asphalt, tumbled over a couple of times, and began to cry. The other eight heard the boy cry. They slowed down and paused. Then they all turned around and went back. Every one of them. One girl with Down syndrome bent down and kissed him and said, "This will make it better". Then all nine linked arms and walked together to the finish line. Everyone in the stadium stood, and the cheering went on for ten minutes.

Web Wanderings
NDSS/NICHD Sign $3 Million Research Agreement

Bethesda, MD. The National Down Syndrome Society (NDSS) and the National Institute of Child Health and Human Development (NICHD) have entered a new $3 million partnership that will result in the largest sum of funding ever earmarked for Down syndrome research.

The partnership between NDSS, a private, non-profit organization dedicated to education research and advocacy for individuals with Down syndrome and their families, and the NICHD of the federal National Institutes of Health, is designed as a matching program, whereby NDSS will add $600,000 over three years to an anticipated $2.4 million in funding from NICHD.

The funding will be allocated in the form of grants to individual researchers and organizations conducting research in areas to include Down syndrome-specific cognition, behavior and related therapies. The NICHD expects to publish its solicitation for grant applications in early 1998, with late 1998 as a target date for the first grant awards.

"Down syndrome has always been an area of high priority for the NICHD because it is the most common genetic cause of mental retardation, and because it involves every system of the body," remarked Felix de la Cruz, M.D., M.P.H., chief of the Mental Retardation and Developmental Disabilities Branch of the NICHD. "If we understand the causes and effects of Down syndrome, we can also gain a better understanding of cardiovascular conditions, Alzheimer's disease, childhood leukemia, and more."

The NDSS and the NICHD have a long history of working together, explained Elizabeth Goodwin, president and co-founder of NDSS. "It's gratifying to see this relationship grow into a more formal partnership. We can accomplish so much more when we work together."

This historic partnership culminates the first phase of NDSS's successful Thresholds strategic planning and fund-raising campaign, bringing the campaign to a total of $4.2 million in gifts and pledges, well over the $3.5 million goal. "We're grateful to the NICHD for enabling us to take this significant step forward in Down syndrome research," said Thomas F. Robards, chairperson of Thresholds. "This partnership will open the door to major scientific advancements that will benefit all individuals with Down syndrome as well as countless others."

"The alliance will bring both organizations closer to realizing the shared goal of improving the lives of all the people we serve," commented Myra Madnick, NDSS executive director.

Father's Journal
Diaper Rash and Prayer
Our son Emmanuel was born with Hirschsprung disease and after the surgery the dreaded diaper rash sets in. We went through three pediatricians until we found the perfect one. Pediatrician number three solemnly declared that these rashes do not go away until the child is potty trained, as per example of one of his patients. Then, to set the proper mood, he mentioned the higher incidence of Leukemia in children with Down syndrome, as if we had not done our research already.
My wife Gloria refused to accept Emmanuel's raw rashes and badgered our Gastroenterologist for ideas in the art of rash prevention after a pull through surgery. Perseverance paid off and Emmanuel is rash free. Our solution was to control his stools with just the right amount of cereal intake, cloth diapers, hourly changing with soap and water, pull through cream, over a base of Lomotrin^® applied liberally with prayer, lots of prayer.
The Gastroenterologist got out his notebook, asked us how we cured Emmanuel's rash, and my wife, bless her soul, simply said, "prayer", and that is what the Gastroenterologist wrote.