Children with advanced CMT and School Accommodations

July 31, 2009

In feel all kids just want to be kids. However, we can't expect children with

CMT that has progressed to live in denial and tell them to suck it up and just

blend in. It isn't as easy today as it was years ago. Today, it seems to

me,(and I have worked in the school system for over 10 years now) kids are more

cruel and less accepting of differences that they cannot see or can see but

don't understand. Asking our CMTers to ignore their limitations and hang in

there can cause irreparable damage to their bodies. Children who try to hide it

need to know that they don't have to. They have nothing to be ashamed of.

I am truly happy that many CMTers had no problems fitting in when they were in

school. I am thrilled whenever I hear that when they were in school they still

didn't need braces or AFOs and were able to keep up. They were very lucky that

their disease hadn't progressed that far. Those that continued to play sports

despite AFOs - good for you! Truly amazing and inspiring.

That being said, for those of us parents who have kids who have progressed much

earlier and with greater severity,there is a definite need to step up and try to

put measures in place to protect our children from overly aggressive

teachers,coaches and mentors. Then, we need to ensure that those measures are

adhered to. The system of checks and balances isn't working in the majority of

our nations schools and something needs to be done.

So, if you are a CMTer who didn't have it terribly bad when you were young, or

if you are not a parent; it's my feeling that you don't need to find fault with

or dispute what we are trying to do. It will not impact you in the least. At the

most, it might help someone you know and love (like a niece, nephew) get the

assistance they may need in school someday.

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