When you are new to disability

Has a child’s disability recently touched your life? Are you visiting this site looking for information about that disability? Would you like to find organizations and people that can help address the disability-related questions and concerns you may have?

Disability is a natural part of the human experience. Here are several ideas from people who have disabilities or who are involved with children who do. We hope they give you some guidance and support.

Your child is a person first and always

Disability does not define your child, any more than the color of his or her eyes does. Individuality includes personality, experience, health, education, upbringing, and more. Know this and see it unfold in real time, as your child grows and matures. Having a disability is part of the mix, but so are your child’s strengths, humor, talents, and interests.

Learn as much as you can about your child’s disability

Knowledge is power. It’s essential to learn more about your child’s disability. How does the disability affect learning, movement, memory, behavior, and so on? What kind of special services help? What type of instruction is effective? These are the kinds of questions to ask. Share relevant information with the professionals working with your child. Also share your insights about your child’s strengths and preferences that only a parent can have. (See Links to Disability Information on this site.)

 

You know your child best

You will probably start reading a lot to learn about this disability. Stop and ask yourself whether what you’re reading “fits” what you know about your son or daughter. Keep in mind that not all of it will. Your child is unique, after all. Use the info that fits your child or that might be helpful to your child. Ignore the rest.

 

Don’t let labels get you down

We humans like to have a name for things—and that includes disabilities. We use terms like “cerebral palsy,” “Down syndrome,” or “autism.” These labels can seem limiting and impersonal. It’s common for parents to resist having a label hung on a son or daughter. Some parents even resist accepting special help for their child because of the stigma of labeling. But labels are just terms used for a particular purpose. They’re a convenient way of referring to something. And in the case of children with disabilities, labels are required to be able to access some services. Service providers may have to use labels for eligibility purposes.

So try not to get too hung up by labels. Use the label when it’s convenient or helpful, like when you’re looking for information about your child’s disability. Forget the label the rest of the time. Your child is the same person, either way. He or she hasn’t changed one bit, label or no label.

 

You are not alone

Disability is part of the human experience. Many other parents are where you are today, or have been where you are, searching for answers. It really helps to read what other parents have to say about raising a child with a disability. We recommend reading the short essay You Are Not Alone, written many years ago by parent Patty McGill Smith. Her article lives on because of its insight and candor.

This article was adapted from “New to Disability,” from the National Dissemination Center for Children with Disabilities (NICHCY).