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By Rick Reilly Why do they come? Why do they hang around to watch the slowest high school cross-country runner in America? Why do they want to see a kid finish 3.1 miles in 51 minutes when the winner has run the race in 16? Why do all his teammates go back out on the course and run the last 10 minutes of every race with him? Why do other teams do it too? Why run all the way back out there to pace a kid running like a tortoise? Because Ben Comen
never quits. See, Ben has a heart just slightly larger than the Chicago
Hyatt. He also has cerebral palsy. The condition doesn’t affect his
intellect and he is a straight A student. But his gait is cumbersome and
he has the balance of a Times Square drunk. Yet there he is, competing
for the Hanna High cross-country team in Anderson, S.C., dragging that
uncoordinated, wobbly body over rocks and fallen branches. And people
ask, why? “Because I feel like I’ve been put here to set an example,”
says Ben, 16. “Anybody can find something they can do and do it well. I
like to show people that you can either stop trying or you can pick
yourself up and keep going. It’s just more fun to keep going.” And it
must be, Imagine what it feels like for Ben to watch his perfectly healthy twin, Alex, or his younger brother, Chris, run like rabbits for Hanna High, while Ben runs like a man whacking through an Amazon thicket. Imagine never beating anybody to the finish line. Imagine dragging along a stubborn left side and worse tripping on anything – small rocks and/or licorice-thick branches. Worst of all, he falls hard. Unable to get his arms out fast enough to cushion a fall, he often hits the ground with his head, face or shoulder. “I’ve been coaching cross-country for 31 years,” says Hanna’s Chuck Parker, “and I’ve never met anyone with the drive that Ben has. I don’t think there’s an inch of that kid I haven’t had to bandage up.” But never before Ben finishes the race. Like Rocky Marciano, Ben finishes bloody and bruised, but never beaten. Ben always loses but never quits. It’s some sight when he gets there. Ben laboriously clunking his way home, shepherded by all those kids, while the cheerleaders scream and parents yell encouragement. The other day Ben was coming in with his huge army, Ben’s Friends, when he fell 10 yards from the finish line. There was a gasp and then silence. Ben proceeded through the 15 second process of getting his bloody knees under him, his balance back and his forward motion going again. And he finished. From the roar of the crowd you would have thought he won Boston. “Words can’t describe that moment,” says his mom. “I saw grown men just stand and cry.” Ben can get to you that way. This is a kid who builds wheelchair ramps for Easter Seals, spends nights at assisted living homes, volunteers for Habitat for Humanity, plans to run a marathon and be a doctor. Boy, the youth of today, huh? A Post Note: Hanna High is the home of a mentally challenged man, “Radio.” He has been the football team’s assistant for more than 30 years. Radio gained national attention in a 1996 Sports Illustrated story and is the hero of a major movie that opened this year. If you feel like you could use a little dose of humanity, get yourself to Hanna. And while you’re there, go out and join Ben’s Friends. You’ll be amazed what a little jog can do for your heart. Book Review: Siblings of Children with Autism By Sandra L. Harris, Ph.D. and Beth A. Galsberg, PhD. As the mother of two boys, one of whom has autism, an advertisement for the second edition of Siblings of Children with Autism immediately caught my eye. While my children love each other very much, I am always looking for ways to strengthen their relationship, in particular by getting my typical son to willingly include his younger brother. Written in clear, non-technical language, Siblings of Children with
Autism provides guidance for parents. Both of the authors are professors
at the Douglass Developmental Disabilities Center at Rutgers University
and have worked with children and individuals with autism and their
families. Dr. Harris and Dr. Glasberg discuss basics, starting from how
young children view autism and ending with adult relationships between
typical siblings. Chapter two discusses Piaget’s model of cognitive
development specific to how it affects a child’s comprehension of
autism. Subsequently, chapter three provides thoughtful advice on what
and when to tell siblings about their brother’s or sister’s disability.
The remaining chapters offer information on Siblings of Children with Autism is an excellent resource for parents, one that they will turn to frequently throughout their childrearing years. The book can be ordered from Woodbine House at (800) 843-7323 or through their web site at www.woodbinehouse.com. It is also available for loan at Lekotek. What Matters Most in Inclusive Education: A Practical Guide for Moving Forward by Deborah Voltz, Nettye Brazil, Alison Ford, PhD The concept of inclusion, is intangible, sometimes elusive and often subject to divergent interpretations. Some critical elements, however, are commonly agreed upon. These elements, relate to the culture of the school and the prevailing beliefs and attitudes of educators. Active, Meaningful Participation This concept moves beyond the mere physical placement of students with disabilities in general education classes and considers the quality and quantity of interactions with teachers and students. Active participation implies that students are engaged in meaningful ways in the everyday functioning of the classroom. The following are important questions to ask:
Sense of Belonging Related to the notion of active, meaningful participation is the concept that all students share a sense of belonging in inclusive classrooms. Although differences among students may be openly acknowledged and addressed, the climate of the classroom facilitates the belief that these differences are natural and desirable. Differences among students are seen as assets rather than liabilities. Diversity is having something important to contribute - some unique knowledge, understanding or perspective that only each individual student is capable of sharing. Regarding this aspect of inclusive classrooms, the following questions should be asked:
Shared Ownership Among Faculty Shared ownership among faculty and staff for students with and without disabilities is a third important element of inclusion. This factor implies that although faculty vary in specialization and/or expertise, all are responsible for nurturing the development of all students in an inclusive setting. Lekotek Provides Diverse Services for Children and Families
Pictured above are Noey, Anna, Harrison and Sydney Ford enjoying the tractor at the Pumpkin Patch. This family outing, where each family takes a hayride to the pumpkin patch to individually select their own pumpkin has become an annual Lekotek tradition. In 1984, the one and only service Lekotek provided was the loan of toys during monthly play sessions. Services now include computer evaluations and loans, summer computer camp, Compuplay one on one play sessions, music classes, Happy Tail pet therapy Saturdays, and share groups for moms, dads, siblings and grandparents. Mark your calendars for the following activities: Family Pot Luck
Dinner 2/29 Receive an IRS Deduction! Donate your: Car, Truck, Boat,Trailer, Motorhome or RV to CHARITY AUTO DONATIONS. Charity Auto Donations is a non-profit organization helping charities like Lekotek reach their goals. (770) 944 - 2011 By Fred Pritzker We have a 17 year old son with Angelman syndrome, who requires assistance with almost all activities of daily living. Had we known of his condition prior to his birth, I have no doubt we would have chosen abortion. If new technology suddenly allowed us to “correct” his genetic condition, I am much less sure we would employ it. That may sound curiously inconsistent, but it goes to the heart of the eugenics debate. Our lives, and the lives of everyone who knows our son, are changed. Because he requires more care, we have learned patience. Because he is different, we have learned tolerance and compassion. Because he has a great sense of humor, we have learned to laugh at ourselves. If it were possible to correct all of the “defects” that make us different, I have no doubt our society would be more productive, health expenditures would be slashed and parents would never have to endure the pain of loving a child with disabilities. But would that make our race better? The trajectory of human development has to be judged in qualitative terms. It cannot be measured simply by higher IQs, lower cholesterol and longer lives. One of the other characteristics of people with Angelman syndrome is a happy disposition. Is our son worse off than a mean spirited MIT graduate? Is society better off because of Enron executives? Eugenics is about engineering out pain and weakness – but those are precisely what make us human. Reprinted with
permission from Wired Magazine
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