How do you talk to your kids about their disability and when is the right time to do it? Join Erin and me as we talk with Tara and Tonia Christle about how to approach this subject and when.
Erin and I knew we wanted the Christle twins to join us and bring their perspectives as adults with disabilities. They have great advice for us as parents. It was helpful to know what they wished their parents had done different, and what are good ways to approach, “the talk.”
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From the show:
Every parent is different, and every parent approaches the how and when differently. While there is no right or wrong way to approach things, there are a few things that are important to keep in mind:
- As Tonia shared, disability is not inherently bad. There is nothing wrong with using the word disability, after all, our kids do have disabilities! Not using it, or looking at is as a bad word, can stigmatize and communicate shame. We do not want our kids to be ashamed of their disability.
- It is okay to talk about limitations or things that are different. What is important is that we do not talk about these issues in a negative way, but rather focusing on the fact that different is okay. Tonia uses the example of what she said to her little brother, “My legs are not as strong as yours, and that’s okay!” After hearing this, her little brother would say, “Your legs are not as strong as mine, and that’s okay!”
- It is helpful for kids to understand their own bodies and why they might be different, therefore, giving the name of their disability helps. For example, “I have a disability, it is called cerebral palsy, it means that my muscles and my body move differently, and different is okay,” or, “I have a disability, it is called autism, it means that my brain works different, and different is okay!”
- Disability is part of our children’s identity, it is not what defines them, but you cannot separate their disability from who they are.
- The most important part about talking to our kids about their disability is that we let them know we love them, completely, disability included.
- Always presume competence. For those of us who have kids with intellectual disabilities, we can often refer to, “they don’t really understand” but as Tara and Tonia encourage us, always presume competence. (This is something I teach every time I speak at churches).
We also talked about how often kids with disabilities feel pressured to be “typical,” and in turn, it can make them feel as if they are not good enough, not lovable enough, or ashamed.
So when do we start talking about their disabilities?
Kids with disabilities, even as young as grade school, have already experienced ableism. This is why the sooner we start talking about it, the better it is for them in order to understand and make sense of their experiences. This way they don’t feel there is something “wrong” with them.
We also talked about the 5 Stages of disability attitudes, and how pity is the most commonly experienced attitude since it is the most prevalent. Pity also comes across as niceness, and when we talk to our kids about their disability, we can address their experiences and affirm their feelings.
We brought up the fact that sometimes as parents, we can get stuck in pity as well, so what do we do when we feel our child’s disability is a tragedy?
Tara brought up the prevalent phrase: overcoming disability. She shares why that can be harmful for people with disabilities. This is one of those conversations that as a mom, it stops me in my tracks, so we talked more about this.
The Freebie:
The freebie for this podcast comes directly from Tonia. She wrote the most amazing book to talk about disability. She originally wrote it for my daughter (and we read it for her class) but this is perfect for you if you want a script to talk to your kid about his/her disability, and to make it into book form.
Go HERE to claim your free copy!
Links mentioned:
From Kathleen Downs who blogs at The Squeaky Wheelchair: I Can’t, In Fact, Do Everything I Set My Mind To, and That’s Okay
From Mary Evelyn Smith who blogs at What Do You Do Dear?: Using a Custom Photo Book to Talk to Your child About Disability
So what about you? How and when did you talk to your kids about their disability? Join the conversation on Facebook!
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Wow, that was powerful. It made me realize that I still need to evaluate the way I talk to my son about his disability and it really shines a light on so many things that I can change. How I speak to him about his disability is how he will see himself, I know I can do this better and you guys have shown me how to do that! This has given me a whole new perspective. Thank you so much.
Ellie
Ellie, thanks for the comment. This is what Tonia and Tara have done for me (to help me understand, I have learned so much from them) which is why I knew when we were asked to cover this topic, we needed their voices represented.
Yes, they were so helpful. Maybe one of your future topics could be on “therapies”. I thought that the twins had such an interesting opinion on that and since so many of our children (esp. our kids with CP) get daily therapies, I think it might be an interesting topic.
Great idea!
I love the storybook idea. Thanks for sharing because it gave me some good verbiage to draw from to make one for our daughter. The podcast also gave us some good parallels to use with others.
Amanda so glad to hear!