PERSPECTIVES | Speaking with your child about disability

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JANUARY 2019

Speaking with your child about their disability is different for every family. One mom Mandy M. shared what it was like for her:

“When he was 6. Only because he wanted to know why he can’t do what other kids in his class can do. He has ADHD/autism, and he can’t sit still or concentrate, for example, so I got a book and [the book] explained it perfectlzy to him. Whenever he has struggles at school now he tells me, so I can tell the teacher in order for him to get the right help and support he needs.”

While it may be a difficult conversation, mom, writer, and education blogger Varda Epstein considers the alternative to avoiding it, “...if you don’t have that talk, your child may come to the wrong conclusion...They may figure that since no one talks about it, it must be their fault.” They also may start to feel ashamed. Writer and editor Ellen Stumbo noted, “I would not want any unintentional messages of shame or secrecy surrounding disability passed on to my kids.”

By talking openly, children see that their disability—visible or invisible—is just like any other personal quality. Mom, family advocate, and writer Anna Stewart said, “Talk to your kids about their challenges just like you talk to them about how tall they are or the color of their eyes. It’s just part of them, and does not define them.” In A Day in Our Shoes blog, Lisa observes that children will actually be relieved to know they have a disability. “Most have said that even before their diagnosis, they knew that they were different from most kids and that it was a relief to find out...why.”

Parents also have the power to set the tone for the conversation and to make it a positive one. It becomes an opportunity to build on your child’s strengths. Epstein recommends, “Be very specific about the challenges that come with the disability while praising your child for his specific gifts, as well.” Similarly, parents can reframe an “insurmountable obstacle” as something that requires some assistance or support. For example, in the case of a learning disability, “just help your child acknowledge the need for extra time or assistance, and let her know, too, that she’s neither lazy nor stupid.”

Talking openly about disability and related needs within the family will help children speak up in the future and in public settings, like in an IEP meeting at school, in the workplace, or the community. Epstein added that by “acknowledging the disability and helping children to understand what it means, we are giving them the tools and the self-awareness they need to advocate for themselves.” Parents can encourage their child to do this as early as possible by amplifying a child’s voice rather than speaking on her behalf. Stewart observes, “Advocate with your child and watch them blossom.”

Lisa, in A Day in Our Shoes blog, acknowledges that when and how to have this conversation isn’t always clear, “There are no right or wrong answers across the board.” Ultimately, whatever you choose to do is a personal decision.