Wednesday, December 7, 2016

Video: How and When to Talk to Your Kids About Their Disability


If you are a parent of a child with a disability and are wondering how and when to talk about it with your child, check out this episode of The Unexceptional Moms podcast.  My sister, Tara, and I joined hosts Ellen Stumbo and Erin Lorraine to answer this great question.

If you have a disability, how and when were you told about it?  Is disability discussed in your family?  If you are a parent, what have you told your child or children about theirs?  Will you do anything differently now that you have seen the podcast?

12 comments:

  1. I grew up with undiagnosed disabilities so I wasn't told about them, by my parents or the professionals who evaluated me. I was generally encouraged to think about them as little as possible. Whenever there was a question of why I couldn't do something, I therefore didn't have an answer. This is a great way to develop a self-image as a "defective normal person" rather than an OK disabled one.

    A long time ago, adoption was generally kept a secret from an adopted child until some future point when the child is "ready." The best current advice I've seen for telling a child when he or she is adopted is "on the way home from the hospital."

    That's the path I recommend for talking about disability. Don't make it be a The Talk. Talk about it all the time. Casually. Before a child can understand what you are talking about. When it's relevant. It's not a secret, any more than your child's perceived gender is a secret. At some point, a child will likely ask questions, and these should be answered in a developmentally appropriate manner.

    I have never met a disabled adult who wasn't told about their disability in childhood, who was happy about not having been told.

    And yet every day I work I encounter parents who don't want their child's disability discussed with them or in front of them. Yet another time I wish that parents of children with disabilities were better hooked up with adults with disabilities.

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    1. I believe we touched on almost every single facet of your comment in the podcast. If you get a chance to watch, or listen, I think you would find it quite affirming. (Your experience is also quite common, I think, with regard to your disabilities and not being told, or having it never be a topic of conversation.) You are not alone. Thanks for commenting.

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  2. So sorry for the personal question but how old are you Tonia?? You said you were one of the first to be raised at home so I only ask because I know someone with CP who is almost 40 who was raised at home like I was(I'm half their age). I agree. "Same"ness is over rated. I was told I had CP when I was 3. My family has been fantastic about the whole disability as identity. I like what you said about being informed. I worked with kids who had autism and they were able to understand their own disability and my disability at only 5 years old. I never noticed Ellen having an accent. Accents are beautiful! Amen to the emotional state effecting spasticity and having to wait it out. Story of my life LOL. I'm glad Erin mentioned the fine line with therapy. We must take care of our health and not make excuses regardless of disability. Great job to you Tonia,Tara,Erin and Ellen!

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    1. Hi, Margot. We're (Tara and I) are 35. So glad you enjoyed the podcast!

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    2. Thanks!! I think my friend with CP who was raised at home is actually a bit older than you but I'm not sure. On the video you look closer to 25 :)

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  3. Talking to children about their disabilities in a natural, organic way is so important. I remember being about 4 years old when my parents started to explain CP to me. I don't know if it was the way they explained it or anything else they did (I honestly don't recall talking about it much), but by age 5, I felt self-conscious and broken. I hated the left side of my body. I hated being different.

    The problem was, I feel like we never talked about it much, which made me feel like it was some kind of taboo. Of course, my parents would mention things related to my CP to other parents, but it was often right in front of me or a shirt distance away. This always made me feel defiant, and I would yell at them telling them not to talk about me (which, of course, did nothing to help the situation.). I learned very early on that CP was a hush-hush subject for adults to discuss, and though I couldn't explain it well, I had my agency to self-disclose my medical history robbed at a very young age. My parents didn't stop telling others I had CP as I got older, though.

    My parents made mistakes in this regard, which definitely affects how I see myself today. I'm 21 years old and have an insatiable need to compensate for my CP by doing everything else perfectly. I feel uncomfortable walking in my own home or even out with my friends. I rarely tell my friends that I have CP, and though I write personal narrative, I've never sent a CP-related piece out to be published. I'm tired of being in a "disability closet" and feeling so much shame in who I am, but I'm not brave enough to step out and say that I have CP. Essentially, my parents' approach to talking with me about CP was not a good one, and it's had profound psychological implications on my life.

    This was really long (sorry!) but parents, please be mindful about how you speak to your children about their disabilities. It matters.

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    1. Hi friend,

      I really hope that, if you get time, you'll watch the video, if you haven't had a chance to yet. I think you'll find our (my sis and I's) comments to be similar to what you went through.

      Suffice it to say, I understand. You are not alone. I hope you know I am always around if you need to talk.

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  4. *a short distance away.

    I clearly shouldn't type comments from my phone!

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  5. I was visiting with family and my 3 year old niece saw my walking for the first time. She thought she was supposed to be sad about it but the child's mother,grandmother and I told her I had Cerebral Palsy, and that it was natural and fine for me to move the way I do because that's how God wants it to be and she got it right away and now embraces my disability.

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    1. I've found the same to be true. It's all in how we frame it for the kids. If we explain it's okay, they accept it as such. I'm glad your niece has accepted your CP <3

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