Many of us are in the dark about what to say to a parent whose child has disabilities. We don’t know what’s okay (or offensive) language. We aren’t sure when (or whether) we should ask questions. We want to be sensitive — but worry we making unintended blunders. Here, our author — an educator who has worked with children with special needs for 5 years — offers 10 things that might surprise you about kids with disabilities.
By Katherine Teel
If you are a parent whose child has special needs, there are things you wish you could tell everyone. For instance, you might want them to know that — despite some unique challenges — you have as many reasons to be proud of your child as other parents have to be proud of theirs. Or you might wish to explain that it’s more thoughtful to say “a child with autism” than “an autistic child,” because the former wording puts the child’s personhood before her disability. Unfortunately, it’s not always easy for parents to share their insights about children with disabilities, particularly the issues that tug at the heartstrings or make the blood boil. So here are a few key points about kids with disabilities that their parents probably wish you knew.
1. It’s okay not to like a kid with a disability.
People are people. Some we click with and some we don’t. As parents, we get frustrated when people focus their dislike on the disability itself. We hope everyone will like our child, but the truth is — regardless of ability status — we all get along with some people better than others. Kids with disabilities want a fair chance, but they don’t expect everyone in the world to love them.
2. They don’t want to be your inspiration.
Up to a certain age, kids thrive on positive attention. Once they hit middle school, it can be trickier, because even positive attention singles them out, and they don’t want that. The absolute worst thing, though, is to single them out because of their disability. Even apparently positive comments like, “You really inspire me,” put kids in an awkward position. They are just doing the best they can with what they have, just like everyone else, and they would prefer to be treated that way.
3. “Disability” could mean almost anything.
In the state where I teach, there are 16 separate categories of disabilities, including one called “Other Health Impairment,” which includes disabilities that can’t be categorized elsewhere. If you hear that a child has a disability, wait to learn more before you make any judgments about how it affects their everyday life.
4. Some disabilities are invisible.
Some disabilities, such as Down Syndrome, hyperactive-type AD/HD, or some types of visual impairment, have obvious observable characteristics, but many don’t. Some disabilities and disorders have subtle signs that are difficult to diagnose and treat. It may be difficult to provide appropriate services for these types of special needs, but they still cause kids to struggle. You might know a child with a disability and never realize it.
5. There are actually more females than males with disabilities.
When most people think of children with disabilities, especially behavioral disabilities, they often think of badly behaved boys. But among all people with disabilities, there are more women with disabilities than men. This doesn’t mean that girls with disabilities are identified in schools as often, though. Disability in girls, like heart disease in women, doesn’t look like the “norm,” and so it often gets overlooked.
6. Sometimes disabilities are hidden — on purpose..
Parents live in fear that their child will be more limited by the system than they are by their disability. Every parent of a child with a disability has a story of getting different treatment once their child’s diagnosis was made known. So sometimes parents neglect to mention a disability if possible, so that others can get to know our kids on their own terms. And kids, because they want to fit in, will often do the same thing.
7. You can ask — but not in front of people.
Kids don’t want to seem different from their peers. If you have a question about their disability, or if you want to know the best way to handle something, ask them, but wait until you have a private moment. Don’t put them on the spot in front of everyone. When you have a moment alone, use common courtesy: “If I see you struggling with something, would you like me to help you, or should I wait for you to do it yourself?”
8. They know how to work the system.
Everyday things can be hard for kids with disabilities, and so they learn how to get out of them. They learn just how to behave to get sent to the hall instead of having to do math with the rest of the class. They learn just what kinds of grades will qualify them for SSI disability payments. They may have diagnoses of intellectual disability, learning disability, or physical handicap, but certain behaviors have been rewarded throughout their lives, and they’ve learned them well.
9. It’s always an issue.
People with disabilities know that no matter how open-minded someone is, or how used they are to interacting with people with disabilities, those with disabilities know that people see the disability first. It’s very hard for anyone to meet a person first, and then deal with the fact of the disability. Those with disabilities know this, and they feel it. They usually learn to live with it, but it’s important to know that — in terms of how they are treated — their disability is always an issue.
10. It’s important to look beyond the label.
Kids with disabilities are people like anyone else. You might know a child with autism, but that simply describes a set of symptoms and patterns. It does not tell you what that child likes, what he’s capable of, or what you can learn from him.
Find camps and classes for kids with disabilities in your area.
On ActivityHero.com, it’s quick and easy to find local programs that provide a variety of options for kids with physical disabilities, children with autism, and kids with a variety of other special needs. Many programs also are also inclusionary or mainstream, bringing together children with disabilities and children who don’t have special needs. Click here to find current programming in your area.
Additional Informational Resources
http://www.unicef.org/disabilities/
http://www.supportforfamilies.org/resources/InformationPacketsPage.html