MY GUIDE > Advocating for a Child with an “Invisible Disability”

KEYWORDS: age 1 up to age 3age 3 through 5diagnosis disability informationdisability factsnewborn up to age 1

Just because you can’t see it doesn’t mean it isn’t there

An “invisible” disability is any disability that is not immediately apparent. If you are a parent of a child with an invisible disability, it can sometimes be a little more difficult to be an effective advocate for your child.

All children need to have someone on their side to help them navigate the world around them. For a child with an invisible disability, that can mean explaining to the other adults in your child’s life the issues that she faces daily.

Don’t become discouraged when people say, “Well, she looks just fine to me!”  Instead, continue to focus on your child and help educate others about her disability. 

Help set her up for success in the home, community and school settings. At home one of the ways you can help her is to start teaching her to let you know what she needs. This is important, because sometimes even you cannot always see all that she struggles with. You can also teach her to start advocating for herself by giving her the words to let others know that she needs something.

In the community, you can help her by finding activities that are geared toward her strengths and that work around some of her weaknesses.

At school, you will need to be on a team with her teachers to help them give her a chance to be successful in the classroom. You can advocate for her by letting the teachers know what she struggles with and what you know can help her with those struggles.

Remember sometimes when a person first meets you or your child they cannot “see” the disability so they may not know that your child struggles. It can be frustrating for you and for your child. In time, you can overcome this by calmly explaining to medical, therapeutic and educational professionals the help your child needs.

Five ways to be a better advocate for your child

  1. Educate yourself and others about invisible disabilities. The Invisible Disability Association website may be a good place to start.
  2. Encourage your child to begin learning how to advocate for her own needs.
  3. Enlist the help of others in your child’s life.
  4. Explain calmly and clearly to others what your child needs.
  5. Empower yourself with the knowledge that you and your child can do this!