Kenny is a fifth grader at a suburban public school. Like other fifth graders, he likes to wear cotton sweaters and blue jeans and high top sneakers without any shoelaces. He hates doing his math homework, but he does it anyway, because he wants to do well in school. But there is a difference between Kenny and his classmates. Kenny gets around his school in a wheelchair.
Through no fault of his own, Kenny has a disability. He has cerebral palsy, a disorder that affects the way his brain controls and coordinates his body movements. Cerebral palsy is usually caused by damage to the brain before, during or soon after birth.
Although Kenny's disability is not a disease, and is not catching, his classmates were a little uncomfortable around him when he first started school. But that was a couple of years ago. Since then, Kenny's classmates have gotten so used to his wheelchair that they almost forget it's there.
Kenny has also gotten used to explaining his condition to people who wonder about it. "My muscles don't get the right messages from my brain to make them move the way I want them to," he says. "That's why I have to be in a wheelchair. But I get around pretty well, I think."
Kenny's classmates learned about his disability with the help of some nearly life-size puppets called The Kids on the Block. You may have seen the puppets at your school or community center.
The puppets -- and the people who control them, who are specially trained to explain health topics to children -- have appeared all over the United States and in foreign countries.
In 1975, the U.S. Congress passed a law providing for free public education for disabled children. Since then, many of these kids have learned how to do as much as possible for themselves, and to live full lives. Special programs like The Kids on the Block and other organizations have helped teach non-disabled young people about the disabilities that may make some of their classmates seem different.
The Kids on the Block puppets teach audiences about many kinds of disabilities -- including cerebral palsy. One puppet named Mark Riley has the condition. He visits classrooms in his wheelchair -- although he calls it his "cruiser." Barbara Aiello, who started the puppet troupe, modeled Mark Riley on a real boy who had been a student in her class when she was a teacher. She noticed that the other kids in the school avoided talking to the real boy about his wheelchair or his physical disability. Then she made a wheelchair-riding puppet -- and found out that kids were eager to "talk" to him.
When the puppet Mark Riley visited Kenny's school, he answered many of the questions Kenny's classmates had been embarrassed to ask Kenny themselves. After Mark Riley left, they were more understanding. They realized that they couldn't "catch" Kenny's condition. They found out that his cerebral palsy didn't mean he was stupid or unpleasant -- it just made him look and move differently from the way they were used to. Once they knew more about Kenny, they got to be friends with him -- and found out that he was nice, and funny, and shared the same interests they had.
To find out more about The Kids on the Block Inc., tell your parents or teachers about the organization's toll-free number, 800-368-KIDS. In Washington, call 836-0550. Tips for Parents
"The Chronically Ill Child and Family in the Community," a brochure published by the Association for the Care of Children's Health, a Washington-based organization, offers the parents of disabled children tips for managing in the community and in school. This brochure, as well as other useful publications, is available from the ACCH at 3615 Wisconsin Ave. NW, Washington, D.C. 20016; 244-1801. The organization's tips include:
Familiarize yourself with the laws that ensure all children with handicapping conditions or illness free public education with services appropriate to their needs. This is U.S. Public Law 94-142, 1975, Section 3.C. Local implementation varies from state to state.
If you are concerned that your child's needs are not being met adequately, most states have protection and advocacy programs which may be able to assist you.
Visit your child's school and talk with both the teachers and principal.
A visit to your child's school and teachers by a member of his or her health care team is an excellent way to obtain the cooperation of the school and teach them about your child's special needs. Continued direct communication between the health care team and the school also may be helpful for your child.