|March 2001 Issue||
Our February meeting on estate planning was very well attended. Kenneth Buren, E-mail: firstname.lastname@example.org of the law firm of Greensfelder, Hemker & Gale, P.C. spoke on wills; durable powers of attorney; special needs trusts and guardianship.
Our group meets on the first Friday of every month at 6:30 p.m. at Saint Anthony's Wellness Center in the Alton Square Mall. For driving directions call the Wellness Center at 462-2222.
Enclosed is the brochure STARNet 2001 Family Conference which is especially for parents, grandparents and foster/adoptive parents of children with disabilities birth-21 in southern 38 counties in Illinois.
May 25-6. Illinois Christian Home Educators 2001 Annual State Convention. Raising our Children to Stand before Kings. Calvary Church, Naperville, IL. Dan and Sally Weise are among the workshop leaders and have an 8-year-old daughter with Down syndrome. For more information contact ICHE at (815) 943-7882, E-mail: email@example.com, URL: http://www.iche.org.
July 6-8. National Down Syndrome Society Conference in San Diego, CA. For more information contact NDSS at 1 (800) 221-4602 or http://www.ndss.org
STARNet Region IV
Like many children with Down syndrome, our daughter needs to wear an orthopedic shoe, though not one that must be custom-made. We had been in the habit of driving quite some distance to a Stride-Rite shop and paying what seemed a small fortune per pair. We recently discovered a new line of shoes at Pay Less called "Smart Fit." We purchased one pair of appropriate (and essentially identical) shoes for our daughter at each of the two stores and brought them to some of the professionals we work with (a physical therapist and an orthotist) and both pronounced the Pay Less shoes equal in orthopedic quality, and slightly better in construction. The best news, though, is that they cost half as much, and we did not have to drive 40 miles round trip to get them. Needless to say, we returned the Stride-Rite pair.
By Terri Devine, (708) 349-9669, e-mail: firstname.lastname@example.org
I serve on the Board of Directors of The Arc of Illinois and am also on the Resource Development Committee. We consider our board members to be one of our greatest assets and resources.
We are looking for nominations to the Board and certainly feel the need to expand our geographical base. The Arc would like to improve its board representation in Central and Southern Illinois.
Through our "Campaign for Community Living" and the "Do The Right Thing Campaign," The Arc has developed Regional Influence Centers throughout the state. Those Regional Influence Centers were developed around major media outlets, legislative districts and DHS Networks. As a result, we have witnessed many positive outcomes through our targeting of those areas (primarily Chicagoland and Springfield) for media and legislative influence for our important issues.
Our goals are now to expand our influence through targeted representation on our Board of Directors. We foresee a regional representation developing within The Arc and the further development of grassroots actions.
With this in mind, we are seeking candidates who would consider completing the formal nomination application for consideration on The Arc of Illinois Board of Directors. Individuals should have a statewide perspective, attend four board meetings per year, but primarily serve as a spokesperson in your area for disability issues. Board elections take place at the annual meeting in April.
Down Syndrome Articles
The Other Dale Evans by Dick Sobsey, Director, JP Das Developmental Disabilities Centre, University of Alberta, 6-123 Education North, Edmonton, Alberta T6G 2G5 Canada. (780) 492-3755, Fax: (780) 492-1318, E-mail: email@example.com
Reprinted from Down Right Active, March 2001, p. 3, the newsletter of the Tidewater Down Syndrome Association.
© Copyright 2001 Dick Sobsey. Non-exclusive copyright clearance is extended to publish in any newsletter, magazine, or newspaper.
Like lots of other folks who grew up watching Roy and Dale, along with Trigger Nellybelle and a bunch of other neat stuff on Saturday mornings, I was saddened to hear that Dale Evans left this earth. But the autographed copy of her book Angel Unaware in my office and limited edition Roy and Dale 50th anniversary plate that hangs in our living room make it pretty clear that I was a little bigger fan than most. For me an thousands of other people like me, Dale's greatest contribution wasn't her songs, or singing voice, or those old shows, although I liked them all a lot, too, Dale touched our lives in a much more important way because we were parents of kids with developmental disabilities. A lot of us believe that Dale Evans set us free, and I would have to say that I agree with that at least to a point.
Of course, Dale was a parent of child with a disability, too. Robin Elizabeth was born on August 26, 1950. She had Down syndrome and she only lived for a couple of years. But, Robin Elizabeth had a profound effect on Roy and Dale, and what transformed Dale changed the rest of the world in a pretty big way. You see, before that time, few parents had the courage to admit to having a "retarded" child.
In pre-war North America, the powerful eugenics movement blamed such things on bad stock, and most people were pretty quick to believe children like Robin Elizabeth were a burden on society. In the 1940s, prominent Canadian psychiatrist C.B. Farrar, one of the experts used for quality control of institutions here in Alberta, wrote an editorial suggesting that we kill all of these children when they reach age five, and very few people dared to raise their voices in disagreement. The eugenics and euthanasia movements lost a lot of their appeal after people saw how those programs were implemented by the Nazis. Many parents still loved their children who had disabilities and kept them at home, but few had the courage to admit it publicly.
Three women did a lot to change that. These three courageous mothers were Dale Evans, Rose Kennedy, and Pearl S. Buck. Buck did not acknowledge the existence of her daughter early in her career, but later followed the lead of the other two and came out of the closet. Rose Kennedy certainly deserves a part of the credit, but in my opinion, it was Dale Evans 1953 book Angel Unaware that made the biggest difference. The royalties from the book were donated to what was then the National Association for Retarded Children, but Dale's contribution was much more than just financial.
It is only a little book and it started pretty out humbly with a small run. By its twenty-fourth printing it had sold 660,000 copies and the hard cover version still sold for $1.00. The book is still selling well, even though the paperback version now costs $8.99. It has been read by millions. The book is deeply religious and is written as an imagined conversation between Robin Elizabeth, who is returning to heaven after a two-year mission on earth, and God. The foreword that Dale wrote for the original edition describes it in this way:
This is the story of what a baby girl named Robin Elizabeth accomplished in transforming the lives of the Roy Rogers family. (p.7)
She goes on to say:
In this instance, both Roy and I are grateful to God for the privilege of learning some great lessons from his tiny messenger. (p.7)
What followed was an intensely personal account of spiritual growth that Dale believed was the result of her parenting experience. As much as the lives of the Roy Roger's family were transformed by Robin Elizabeth, Dale's book transformed a lot of other families. For some of those folks, that transformation might have been spiritual like it was for Dale, for others it was just down to earth. For all of us who are parents to kids with serious disabilities, however, Dale's work made a difference in how we fit into the world... even for those who don't realize it.
Some people find the book too steeped in Christianity and others feel that describing her daughter as an angel and not just a regular kid just created another stereotype. For me, the important thing is that Dale Evans made being the parent of a child with a disability something to be proud of and I am extremely grateful for that.
Last year I had a chance to write a father's day article that discussed Roy and Dale, and a lot of media picked up the story and ran it. I was thrilled to get over four hundred e-mails, letters, and phone calls about the article. Most of what people wrote about was more about what Dale Evans and Roy Rogers had meant to their family than about my article. One told me about a man with Down syndrome who visited the Roy Rogers Museum and the personal attention that he had gotten from Roy. Many others told me how their mothers used to sing Happy Trails to You or how Dale's book had helped their parents feel proud of their brothers and sisters with disabilities. More than one had been named after Dale because of the inspiration that she had been to their mothers.
When Dale Evans had the strength of character to speak proudly of having a child with a developmental disability, she blazed a trail through a frightening wilderness for other parents. Most of us traveling down that trail don't give a lot of thought to the woman who created it. Many don't even know who made that path. Those of us who know who travel this trail and how much harder life might be without it are extremely thankful.
Some say that when Dale Evans sang Happy trails to you, until we meet again she was thinking about her reunion with Robin Elizabeth in heaven. I know that she had great faith and firmly believed that they would be reunited there. I wish I could be as sure Dale was about life after death, but I sure hope that she is right. If Dale did pass on a better place when she left this one the other day, she might tell God the story of how she transformed people's lives just as she imagined Robin Elizabeth telling hers. If so, I suppose she might finish it in the same way...
"And now, Father, please... could I just go out and test my wings?"
Exceptional student: Verve of teen with Down syndrome brightens the halls of Keller school by Khalil Abdullah, Fort Worth Star-Telegram Staff Writer, (817) 685-3819, E-mail: firstname.lastname@example.org, 02/05/2001, Northeast Edition.
KELLER - Fourteen years ago, Lyndon LaPlante was a one-in-a-thousand chromosomal mishap, a child born different from most.
Now, like many teen-age boys, he can belt out the Baha Men's Who Let the Dogs Out? verbatim, watch football games on television for hours and yearn for teen-age girls, who his parents say are off-limits until high school.
Some describe the boy with sandy hair and hazel eyes as remarkable. Born with Down syndrome, Lyndon attends regular seventh-grade classes at Keller Middle School. He runs the 100-meter dash in the Special Olympics, dances at school parties and is preparing to take tae kwon do lessons.
"He truly doesn't realize he has Down syndrome," said his mother, Genni LaPlante, who heads the Keller school district special education program. "I don't tell him he's disabled or that he's different. He's just Lyndon to us."
This school year, his peers chose him to serve on the Student Council. Students and school officials say it's a testament to Lyndon's upbeat personality and positive effect on people. The council meets monthly to plan school activities, to help others with homework or to socialize.
"I like it because we have meetings and I get to be with my friends. I have a thousand friends," said Lyndon, flashing a coy smile, his teeth shining with silver caps.
Lyndon was born with Trisomy 21, a chromosomal abnormality that causes Down syndrome. Like 95 percent of children who have it, he was born with an extra 21st chromosome. Most people have 46 chromosomes per cell, but Lyndon has 47. The cause of the disorder is unknown.
His features are particular to Down syndrome: a broad, flat face, large almond-shaped eyes and small hands, his fingers curved inward.
Lyndon nods and grins when his mother says, "We think he's handsome."
Before LaPlante, now 48, gave birth to Lyndon, she had no warning signs, no doctor's diagnosis to prepare her for the eventual pain.
After the delivery, doctors told LaPlante that they had seen unusual fleshiness at the base of Lyndon's skull and wanted to examine him further. When she was told that he had Down syndrome and a hole in his heart the size of a nickel, she refused to believe it. There was no way.
"To me, he looked perfect and beautiful," said LaPlante, whose two other children are not disabled. "All of a sudden, it became the darkest day of my life. I was scared and literally cried myself to sleep."
She placed Lyndon in therapy with the state-sponsored Early Childhood Intervention program when he was 6 months old. That helped teach him to hold his head up, control his arms and legs, and improve his speech.
Eventually, Lyndon learned to use the bathroom by himself, to walk, to talk, to socialize, to match his clothes. It just took longer, LaPlante said.
"We try not to ever treat him any differently. He knows what we expect," she said. "He needs to feel that he can do anything if he tries."
For two years, Lyndon attended special education pre- kindergarten classes at Florence Elementary School in Southlake. Then, he was enrolled in a half-day kindergarten class at Parkview Elementary School in Fort Worth with other disabled children.
He had been labeled mentally retarded, but reading, writing and arithmetic were still within his grasp. At school, he was mainly taught basic life skills, but a curious Lyndon appeared to want more.
As he grew older, LaPlante pushed to keep her son in regular classes.
These days, districts are required to have a policy of inclusion. It means that students with mental or physical impairments should not be hidden in a remote building, cordoned off from the world of so-called regular children.
The law does not require that all special education students be included in regular classes. But schools must place students in the "least restrictive environment" possible, according to the U.S. Department of Education.
In other words, if special education students can be placed in a regular school or class environment, then they should be.
At Keller Middle School, Lyndon learns alongside non-disabled peers, although he often receives help from teachers. He also takes athletics, science, wood shop and his favorite class, history.
"I like school. I like my teachers," Lyndon said, pushing his glasses back into place. "I get to give speeches and learn about Texas."
Lyndon trails his classmates academically, so his teachers adjust his assignments, including tests, to about a third-grade level.
While he is learning to multiply single digits, the rest of his class is grappling with pre-algebra. His vocabulary lists include school and rule, while his classmates are learning tumultuous and zenith.
Lyndon appears to fit in with his peers. In many ways, he is no different from any other middle-school boy - the occasional joking or talking out of turn in class, a less-than- enthusiastic attitude about homework.
"Even though he may be different in everybody's eyes, Lyndon is the same in class," science teacher Les Baker said. "If he's late or disrupts class, I get on him like anyone else. But usually, he's a pretty pleasant kid."
Baker weaves in lessons about Down syndrome, most recently during a discussion about DNA. Last week, the class learned about bone structure and how to identify parts of the human skeleton. They played Bone Bingo.
"He's like any normal kid, funny, smart... just like us," said Eric Baldaccini, 13, who is in Lyndon's history class. "He fits in with everybody else in class. And when he needs it, we're always there to help him."
Baker said Lyndon learns from watching and imitating other children. And they learn tolerance from watching him.
"We're all real patient with him, especially when he gets all energetic and hyper after he sees us in the hall," said Zack Martin, 12, Lyndon's best friend. "And no one ever teases him. He's liked a whole lot."
Principal Debi LaMarr said teachers do not believe that Lyndon takes time from the education of non-disabled children. Instead, he has taught classmates that "everyone is special in their own way," LaMarr said.
Lyndon has been sent to the principal's office twice: for picking up a boy to prove that he is stronger and for returning late to class after horsing around in a restroom.
"We treat him equal to others," LaMarr said. "I certainly don't see him wanting to disappear in the crowd. No, he is eager to feel involved."
And involved he is. Lyndon plays in a baseball league, goes camping and fishing, and is quite an artist. He draws science fiction monsters that he plans to send to movie director George Lucas for the next Star Wars film.
He wants to be president one day so he "can give speeches and wear suits." Other goals include being a newspaper reporter, earning a driver's license at 16, attending the University of Texas at Austin and helping run the family remodeling business.
Class Action Lawsuit Filed in Illinois on Behalf of the Adult Developmentally Disabled. Attorney Robert H. Farley, Jr., e-mail: email@example.com, has filed a class action lawsuit against the State of Illinois in September, 2000, for failing to provide to the adult developmentally disabled, residential (group home) and non-residential (day programming) services. URL: http://www.illinoisclassaction.com/