Oh, That’s the Kid who has ______! Or, Being “Different” in School
A child who had recently gone through chemotherapy and was bald reported that a kid in school called him a human bowling ball. A boy with a heart problem can’t play most sports, and other kids tell him he’s lazy. A child who takes medication that makes his face swell is called Chipmunk or Cabbage Patch. A child who’s deaf says that people are always asking him what that thing on his head is when they see his implant. He tells them they better watch out, because he’s a “junior undercover FBI agent.”
If there’s one thing you can say about most kids, it’s that they don’t want to be “different.” Very few kids like to be singled out in a crowd. Usually, they want more than anything to be an accepted member of their “pack.”
That’s what makes it hard to be a kid with a disability. Whether it’s a learning problem, such as attention deficit disorder; a physical problem that’s not obvious, like diabetes; or a condition that is obvious, something that requires a wheelchair, for example, life can be complex. It’s complicated enough to have to take medication every day, maybe not be able to eat all the things other kids are eating or to have to navigate the school day in a wheelchair. But maybe the hardest thing for kids with different needs is the isolation and ridicule they often feel from some of the other kids in school.
Teachers can be insensitive sometimes too. When a boy who had cystic fibrosis missed a day of school, his teacher told the kids in his class that he was sick and probably wouldn’t live long. When he came back to school, some of the kids asked him how long he would live.
What parents can do
Having a child with a disability adds a new dimension to your role as a parent. It’s as if in addition to providing the love, encouragement and support that all parents do, you also have to become an expert and an advocate. This is especially true when it comes to navigating your way through the school years. There are steps you can take to make the road as smooth as possible for your child and your family:
Connect with other parents Other parents who are in a similar situation as you can be invaluable sources of help and information. They’ve had to negotiate the things you are facing now—making sure your child gets all the services children with learning disabilities are entitled to, dealing with the effects of the disability on other children in the family, handling the emotional aspects of the situation, etc. There’s nothing like getting help from people who’ve “been there.”
Ask teachers, your child’s pediatrician, or other professional for names of support groups in your area. In other words, get yourself plugged in to as many resources as you can.
Consider organizing a program at your school. This may sound daunting, and maybe you can do it with a group of parents who share your concerns so that you don’t have to o it alone. Contact your local Parent Teacher Association to see whether you can create a program that fosters understanding and acceptance of children who are different.
The National Parent Teacher Association, on its Web site, describes a program that started out when the father of an autistic child approached his school about sponsoring an “abilities awareness program.” From that came an entire series of events, from questionnaires asking students their feelings about kids with disabilities, to presentations by kids about what it’s like to live with a disability, to kids without disabilities seeing what it’s like to participate in such activities as wheelchair races.
Visit the Web site for ideas
about how you can get involved in something similar at your child’s school
Family therapy can be helpful. Talking with an objective professional can help you deal with the difficulties that arise when you have to take care of a child who has special needs. If you think your family could benefit from something like this, don’t hesitate to give it a try.
J. Fleitas, Associate Professor of Nursing, Fairfield University, Band Aids and Blackboards Web Site; National Parent Teacher Association; U.S. Department of Education.