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Disability is Natural

September 13, 2011

Last weekend I went to the first session of a Parent Leadership workshop. At the first session we met a woman named Kathie Snow. She spoke to us about her view on disability. She is the mother of two children, one of which is a young adult with CP.

Kathie’s presentation gave me a completely new perspective on disability. More of a perspective from that of the disabled person and not just a parent. Kathie pointed out that all of us parents thought we were the experts on our child’s disability. That we always knew what was best. She pointed out that the real experts were the adults with disabilities. They know what helped them. They know what it was like growing up with their disabilities, going to therapy, always needing to adapt.

One thing she talked about that really effected me was about how too much therapy effects our children’s self esteem. We are sending them the message that they aren’t good enough, that we want them to be something they aren’t. That one really hit me. I never want Owen to feel that way. I really need to make sure I convey to him that doing his best is all I’m asking for, even if that means he never walks or talks.

Another thing she said that really hit me was simple… Assistive Technology should not be viewed as a last resort. If you give your child a communication device, a power wheelchair, etc… that doesn’t mean you are giving up on them being able to talk, walk, write, etc. It just means you are giving them a chance to live a real life. To participate like kids their own age.

The last thing I’ll write about that she discussed was about our children living “real lives” and what a “real life” is. An example she gave is when we are on our death bed, we aren’t going to be saying, “Boy, I’m glad I learned to tie my shoe” or “I sure am glad I learned to walk”. No, we will be thinking of our relationships and experiences. Its important for us to make sure our kids have that.

Needless to say I could go on and on about everything I heard, but I won’t. I do encourage people to check out her website and read some of her articles. It will definitely make you think.

What I took away is that I need to find a happy medium for Owen. No more living in “disability world”. Make sure Owen has a life beyond therapy.

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One comment

  1. Very interesting.



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