|December 2002 Issue||
Our next meeting is scheduled for February 2003. We wish all families a joyful and blessed Christmas. With this issue we enclosed a pamphlet on the Therapeutic Equestrian Program from Beverly Farms, Godfrey, as well as an article with a disconcerting final sentence: "I think every family should have a child with Down syndrome" to which we add an excerpt from Le Professeur Lejeune, fondateur de la génétique moderne (Mame, 1998) by Jean-Marie Le Méné, translated for us by Christine Platt:
Who can predict a child's destiny?
One of my friends, Professor Varkani, who taught embryology at Cincinnati, told me the following story: "The night of April 20, 1889, my father, who was a physician in Braunau, Austria, was called at two childbirths. One was for a loudly screaming good-looking baby boy; the other was for a poor trisomic baby girl. My father followed the destiny of these two children. The boy had an extremely brilliant career. The girl's destiny was rather gloomy. Yet, when the girl's mother was stricken with hemiplegia, this girl, whose intellectual quotient was very mediocre, kept the house with the help of neighbors, and gave four happy years of life to her bedridden mother."
Lejeune adds: "The old Austrian physician does not remember the name of the little girl, but he could never forget the name of the little boy: His name was Adolph Hitler."
This issue is in tribute to Holly Wrobbel.
STARNet Region IV
Sunday, December 8, 1:00 p.m. - 4:00 p.m. You and your family are invited to attend the Down Syndrome Association of Greater St. Louis Winter Wonderland Holiday Party. High Ridge Elks Club, 2808 Old Hunning Road, High Ridge, MO 63049.
1:00 Pizza, Salad and desert will be served
2:00 A very special guest appearance from Mr. and Mrs. Claus
2:00 - 4:00 Music and dancing
Talk-Tools Seminars in Oral-Motor Therapy in St. Louis, MO.
To register, call Talk-Tools, 3420 N. Dodge Blvd., Suite G, Tucson, AZ 85716, at (866) 369-3543 or online at http://www.talktools.net. Fax: (520) 795-8559, E-mail: email@example.com.
March 21-22, 6:00 a.m. - 10:00 p.m. The 9-hour Wrightslaw Advocacy Training Program will be held at Hayden Auditorium, Thomas Metcalf Laboratory School, Illinois State University's campus. The sponsors for this advocate training program are StarNet, Illinois State University, Livingston County Local Interagency Council, Ford-Iroquois County Local Interagency Council, McLean County Local Interagency Council, Child & Family Connections #16, Child Care Resource & Referral Network. The auditorium is located on the southwest corner of S. University St. and E. College Ave. in Normal, Illinois 61761.
Friday evening session will cover Special Education Law: IDEA, Extended School Year, Child Find, Least Restriction Environment, Private Placements, Evaluations, Reevaluations, Individualized Education Programs (IEP's), Procedural Safeguards, Complaints, Notice, Placements in Alternative Educational Setting, Section 504. Saturday's session will be more intensive and personalized. Participants will have opportunities to network as they learn how to use special educational statutes and regulations to get answers to questions and how to use tests and measurements to measure educational progress.
The registration fee will be $50.00 per person which will include copies of the Wrightslaw: Special Education Law and Wrightslaw: From Emotions to Advocacy books.
For further information, call Carol Darveau at (815) 657-8686 or e-mail: firstname.lastname@example.org.
Down Syndrome Articles
Beyond Limitations by Laura Watts, Program Director, LauraW@hope-haven.org, At The Center, Premier Edition Oct. 2002, p. 1.
Empty faces pressed against the black iron bars and stared out at the road. We drove by quickly. I saw no ages, no gender - only vacant eyes with open mouths and closed minds. This was Willowbrook in Staten Island, the institution for the "mentally retarded" that conjured up visions of horror and mystery in my five-year-old mind. This was my introduction to the limitations placed on the expectations of those diagnosed with a disability.
When our son was born 14 years ago there was a myriad of "black bars" surrounding him - the most significant of which was the diagnosis of Down syndrome. The prognosis was grim - "He may not walk, he may not talk and he most likely won't be toilet trained until he's around 16". Now he not only walks but he jogs. He talks, in fact, he chatters and he was toilet trained at age 2. And as a bonus he reads, writes, loves the Jaguars (especially Coach Coughlin) and can party the night away. Terrific medical treatment? Great parents? Perfect therapists? More likely a combination of a consistent flow of unbiased intervention, unconditional love and unlimited expectations.
Clients come to the Down Syndrome Center on a regular basis with stories of limitations and low expectations placed by well-meaning family, friends and professionals. "He can't read - he has Down syndrome". "He behaves like that because he has Down syndrome", "You won't have any adolescent problems with him - these children are always so sweet" - and, my personal favorite - "Don't worry - that's just the way Downs kids are".
Unfortunately these statements are based on past history and statistics derived from cases of adults with DS who did not receive the early intervention or ongoing therapies and education our children have available now. And unless those working with the child have seen a variety of children with Down syndrome in recent years, they are not aware of the successes and accomplishments now becoming a way of life for these individuals.
At the Down Syndrome Center we have seen close to 400 families of children with Down syndrome. We have seen children born with heart defects excel at sports and "non readers" begin to read in their teenage years. We have 18-month-old babies recognizing word cards and high schoolers tackling geometry. We have students on the A-B honor roll in typically developing elementary school classes and others thriving in special education environments. And we have witnessed the transformation of students labeled as "behavior problems" become model students after appropriate intervention. These children have taught us not to place limitations. They have disproved the "one size fits all" prognosis.
The Staten Island institution has since been shut down and empty faces peer through the bars no more. Attitudes about those who resided there have changed and progress has been made. Ironically, such institutions that robbed the lives of hundreds have provoked the need for change and been the catalyst for facilities such as Hope Haven, committed to seeing the potential and watching it grow. Our children have faces full of expectation and eyes reflecting hope.
Knowing our limitations is a good thing. It helps us set goals, discover our strengths and strive to overcome our weaknesses. But accepting these limitations without challenge brings us back to open mouths and empty lives. It brings us back to Willowbrook.
Worries, hard work and rewards: A child with Down syndrome can bring out the best in a parent by David Crary, 08/31/02. Reprinted with permission of Norman Goldstein, email@example.com, The Associated Press.
COLT'S NECK, NJ - A few weeks after her second daughter was born, Carole Ehlinger received a card from longtime friends. The gist of the message: "You're so lucky."
Struggling to absorb the fact that her newborn had Down syndrome, Ehlinger found the card perplexing - though not for long.
"I didn't understand right away, but that message has really rung true," Ehlinger said. "Catherine has brought out the best in all of us."
Catherine is 23 now, a high school graduate with a boyfriend, working three afternoons a week bagging groceries at a supermarket. Adult and independent in many ways, trustingly childlike in others, she has - like other young people with mental disabilities - provided her parents with a distinctive set of challenges and joys.
"I remember coming home from the hospital, and looking at the comics in the paper and thinking, 'I'll never be able to laugh again,"' Ehlinger recalled. "If only I'd known how wonderful it was going to be."
In the span of one generation, the dynamics of families like the Ehlingers have been transformed as the life expectancy of people with Down syndrome - the most common form of mental retardation - increased from 25 years to more than 50.
Parents no longer assume they will outlive their child, and the option of mental institutions has fallen from favor. Parents and child often spend many more years together than in the past, and parents face difficult decisions about encouraging self-reliance and ensuring a grown child's well-being after their death.
For Carole Ehlinger and her husband, Jim, an executive with AT&T Corp., concerns about the future are eased somewhat by their expectation that Catherine's siblings - Christine and James - could keep an eye on her.
The future has more question marks for others.
Maureen Maimone's 17-year-old son, J.C., also has Down syndrome, but he is an only child, and Maimone worries about what might happen if she dies before he does.
"I have such a profound fear about when I'm not here any more," she said. "Who's going to think about where he'll go for Thanksgiving? Who's going to know he's afraid of thunderstorms?"
Divorced when J.C. was 5, Maimone has been her son's constant companion since his birth. Aside from one 10-day separation many years ago, when she attended a meeting in Hawaii, they haven't been apart more than three days. She wants to encourage his sense of self-sufficiency, but knows not to push too fast.
"He's extremely friendly, he talks to strangers," she said at their home in Ocean, NJ "I try to teach him to be cautious, but not make him fearful."
J.C. attends regular classes at the local high school and also takes special math and reading courses.
"J.C. is very popular in school," his mother said. "Unfortunately, it doesn't carry over to the weekends. His schoolmates aren't going to call."
The result is that Maimone, 46, and her longtime partner, 59-year-old lawyer Andy Kimmel, are J.C.'s weekend playmates - a role they find rejuvenating. They go to concerts, play mini-golf, travel - railroad museums are among J.C.'s favorite destinations.
"The challenge is getting our energy level up," Maimone said. "We're usually on the go all weekend. Sometimes we're pooped, and all three of us just hang out in the bookstore."
Maimone grew up in a large family, and wishes J.C. had the same opportunity.
"Sometimes I think his biggest disability is being an only child," she said. "I have the finances, and the time to do what I want to do with him, but he doesn't have the other stimulation. I wish he had a brother or sister to tease him, play with him."
Maimone recalled being stunned, after J.C.'s birth, at learning he had Down syndrome.
"There was no history of it our families," she said. "We thought, 'He's not ours. It's a mistake.' It was the initial shock, and then 'Let's roll up our sleeves and learn about it."'
She read advice books, contacted experts, founded a support group. Her life -which includes some part-time legal work done from home - has been demanding but rewarding.
"I have those moments where I see that it's different here, that most parents don't have to do all this," she said. "But I truly think that's a small price to pay for what I've gotten back from him. If there's any kind of plus minus-scale, it's 1,000 times on the plus side."
On most Saturdays, J.C. gets a visit from his biological father, who takes him to drum lessons. The role of day-to-day father is embraced zestfully by Kimmel, who like Maimone is divorced. He says his relationship with J.C. is more intense than with his two grown children.
"I love them dearly, but it's not the same thing," Kimmel said. "J.C. is an extraordinary person."
With Kimmel's help, Maimone is now looking ahead, talking about vocational training and future living arrangements for J.C., and also about estate planning.
"Who wants to think about these things? But you have to," Maimone said. "If you don't make plans, they just get dumped somewhere."
She envisions her son getting a job after high school, and moving eventually into an assisted-living facility where he could be more independent.
"I'd love to have him live with me forever - but I'd like him settled somewhere before anything happens to me," Maimone said. "By his late 20s, I'd like to see him living somewhere on his own - definitely nearby - maybe a mile down the road."
J.C. - a strong swimmer, self-taught harmonica player and fan of Jackie Chan - has his own ideas about the future. "I'm going to get married," he said. "I'm going to drive a black VW bug."
But if those are typical sentiments of a 17-year-old boy, his affection for his best friend is not. "You're the best mom ever," he told Maimone, through a hug, as she picked him up at day camp. "You're my pumpkin."
The Maimones and Ehlingers live about 12 miles apart in the pleasant, farm-dotted suburbs near New Jersey's northern coast. Both have become active in programs for young people with disabilities.
When Catherine was 2, Carole Ehlinger founded a dance group for her and other children with disabilities. The group has prospered ever since, with help from the entire Ehlinger family. Catherine has taught some of the youngest dancers; siblings Christine and James were volunteer teachers, and Jim has videotaped some performances.
James, 19, has been a devoted brother to Catherine. They helped each other learn to read when she was 6 and he was 2. More recently, he and some friends coached Catherine's Special Olympics basketball team.
With James entering the University of Notre Dame this fall and Christine, 25, living an hour's drive away, Carole and Jim Ehlinger are in no hurry for Catherine to leave home - she needs them.
"We've chosen to take things as they come," Ehlinger said. "For all your children, your goal is for them to go off and have wonderful, independent lives. For Catherine it's a little tricky. She needs someone to oversee her."
Some experts advocate independent living for people like Catherine, "but it doesn't really ring true to us right now," her father said. "We enjoy having her here. She brings a lot to the family."
If Catherine did live independently, she would need help with cooking, transportation (she can't drive) and finances, her parents said.
"She's very trusting, and someone could take advantage of her," Jim Ehlinger said. "But we've been fortunate. Despite what you read in the newspapers, there are more people who are basically good than bad."
Mrs. Ehlinger long ago gave up teaching to raise her children, and her husband has turned down offers of transfers. One factor, he said, was a sense that Catherine benefited from close ties to friends she has known since infancy in New Jersey.
Catherine's life has been full of milestones, including graduation from high school two years ago and serving as her sister's maid of honor last October. The Ehlingers proudly showed the videotape of Catherine's speech at the wedding reception.
"I love you guys," Catherine told the newlyweds, her voice full of emotion. "I want you guys to stay together forever."
The guests cheered, and Christine rose from her table to bear-hug her sister.
When Catherine was born, her mother recalled, a well-meaning doctor tried to caution the parents that her horizons were limited - that at 16 she'd perhaps be preoccupied with coloring books.
"That was the mindset at the time - don't have high expectations," Mrs. Ehlinger said.
Instead, Catherine has been a pivotal part of a loving, on-the-go family - the one most attuned to others' ups and downs, the one most certain to remember an anniversary or birthday.
"She's been such a positive element in our lives," her mother said. "I think every family should have a child with Down syndrome."
Kelly Sweeney and her parents, Cathy and Kevin. Gary Gaynor/Tucson Citizen|
Kelly works with Wilmot Library aide Jessica Scoopmire. Gary Gaynor/Tucson Citizen|
Left, Kelly and her boyfriend, John Le Clair, on prom night April 27, 2002. Right, Kelly and John in 1991. Gary Gaynor/Tucson Citizen|
Kelly Sweeney (left) gets a high-five from an old friend, fellow Sahuaro High School graduate Janae Springer, while Springer's mom, Jo Ann, looks on. Unpublished photograph courtesy of Gary Gaynor/Tucson Citizen|
Downs Strikes 1 in 800
One in every 800 children is born with the chromosomal anomaly called Down syndrome.
An error in cell development results in 47 chromosomes rather that the usual 46. The extra gene material slightly changes the orderly development of the body and brain.
Women older than 35 are more likely to have children with Down syndrome, but because it is far more common for young women to give birth, about 80 percent of infants with Down syndrome are born to women under 35.