Monday, April 22, 2013

A great new way to describe kids with special needs


Saturday, Max and I raided the library for books about cars, took a walk in the park and had lunch at his favorite Italian place. The meal morphed into something truly amazing.

Max got ziti with butter, every last inch covered in ketchup, and after a brief stand-off in which he tried to get me to feed him (I refused, unlike some other parents I know named Dave) he chowed down with gusto. "Hi, Ellen!" I heard. I looked up; a nice woman I know from around town had sat down at the next table with her son. A. is 12, and has never met Max. We all talked as Max concentrated on eating; he stopped chewing only to say "I'm Max!"

When Max finished, he told me a few things, including that he wanted to go check out the train station afterward.

"Why's he mumbling like that?" A. asked.

I do not mind questions like these, not at all, especially because fielding them is far better than noticing the kids who just blatantly stare at Max, as a couple did when we walked into the restaurant.

"He has cerebral palsy," I explained, "and that means your muscles don't always do what your brain wants them to do. Your tongue is a major muscle, so he has issues with moving it and that's why his speech sounds like that."

A. paused. "Ohhhhh," he said. "He has rebel muscles!"

I smiled. "That is the best description of cerebral palsy I have ever heard!" I told him.

Max hadn't been listening, so I filled him in. "Max, I told him you have cerebral palsy," I said, "and he said you have rebel muscles!"

Max seemed to like that, too.

So often our kids' challenges are described in terms of impairment (disability, special needs), words that encompass their entire beings. But "rebel" makes it clear it's just a part of them that's acting up. It doesn't let their challenges define who they are.

A child with Down syndrome has a rebel chromosome.

A child with autism has rebel senses.

A child with a genetic condition has rebel genes.

A child with hearing issues has rebel ears.

A child with vision issues has rebel eyes.

A child with developmental delays has rebel timing.

Yeah.

35 comments:

  1. I LOVE that description! Guess that means Matt is a super rebel :)

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  2. Thanks for sharing this story today, Ellen! It empowers ALL of us.

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  3. This is great! Thanks for sharing it.

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  4. Lol rebel senses. LOVE IT!

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  5. Ellen....
    I have a confession to make. I am only an occasional reader of your Blog. But whenever I do check it out, I'm not sorry!! Alright. Confession over!! ;)
    I love, love, loved this post!! See, I have "developmental delays", or learning disabilities if you will. I already know that I am a rebel, because I was a girl born with a neurological birth defect called craniosynostosis which mostly occurs to boys. And now this perspective. "A child with developmental delays has rebel timing.". That is great!! I have always done things in my own sweet time!! ;-D
    --Raelyn


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  6. LOVE this! Kudos to that kid's parents for raising a positive thinker!

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  7. that is the best description I've heard too! I love it! And as silly as it sounds, this post kind of made me tear up a little...in a good way. :)

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  8. You think A would mind if I suddenly and unexpectedly hugged him to bits? You gotta love a kid (and his parents) that thinks that way.

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  9. Brought to tears reading this... Our Reagan has rebel senses and rebel muscles. A great perspective!

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  10. Love that! I have rebel muscles. How cool is that?

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  11. My ears sure are rebals! they love to bug me! :) greeat way of thinking

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  12. Oh yes, I so love that! My kiddo has a rebel chromosome! I love when kids speak their minds--the honesty is brilliant and beautiful.

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  13. I have often found that it is children that are the most understanding. We have plenty of rebels at my house too!

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  14. Love this description, what a cool kid! Kids always manage to accept and describe difference way better than adults!

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  15. That is wonderful & heart warming! I have a kid with rebel timing and rebel ears!!! :)

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  16. It's very challenging to have a kid like this. They really deserve care and love. Very heart-warming.

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  17. Love it!

    I love how accepting kids are. Just gorgeous

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  18. That's adorable! I love when I find a typical kid that "get's it!". When my son was younger, and we told him that he had autism, he used to always say "I have "optimism".....I think of it as AUptimism. If I ever write a book, that will be the title! LOL

    Sue

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  19. I love, love, love this! Olivia has a rebel chromosome and/or rebel gene! I'm totally going to adopt this wording.

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  20. I LOVE this!!!!! :)

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  21. Yes - I LOVE this reframe just like your special powers reframe. Was anyone else singing a little Billy Idol Rebel Yell with this one?

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  22. So my guy with Dandy Walker & epilepsy has a rebel brain? I love it.

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  23. My sweet Keegan has a Rebel Brain... And my favorite, David Bowie singing Rebel Rebel :)

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  24. Well that definition certainly describes Lindsey. I don't even need the later part, just the REBEL will do.

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Thanks for sharing!