Dr. Cecily Betz, who is also the health care transitions specialist for CHLA’s Spina Bifida Program, feels that it starts with a conversation — or many — about why they may be different from their friends. “It became very apparent to me early on that many kids have never had the conversation about what to say if their friends ask questions, and that really requires some practice,” she tells us.
There are books that can help with these conversations, of course, and there are plenty of stories about other people with disabilities that our kids can learn from. But it turns out that the person they may need to learn the most about is themselves. Parents should tell kids both the story of themselves and their disability: for instance, what happened when they were in utero or at birth that led to their disability, and how this works in the brain; the tests, schools, and all the therapies they had when they were little; and how hard they worked to get where they are.
For more information about this topic, check out our articles Teaching Functional Life Skills: Disability & Medical Self-Advocacy and What We Talk About When We Talk About Disability.
