Dystonia Bulletin Board

Re: Too little or too much attention?
Re: Re: Too little or too much attention? -- kikihair Post Reply Top of thread Forum
Posted by: karen beaver ®
05/09/2008, 15:46:31

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hello, well i watched on the news about this boy killed on a school trip just 3 weeks ago, he was 17 and had cerebral palsy. he was killed with some of the students as they were washed away in a storm canyoning. anyway they showed him before at school on video and he was up in assembly telling everyone what he had, and his name was tom and not to get him confused with tom cruise, because he is better looking.
He said he used to ask god why did he make him so different and why did he not give cp to (pointing) you, and you, and so on.
he gave a good speach and people understood his speech even if he had trouble talking.
if i had that chance because i knew what i had i would talk and talk, but i'm shy now and i only found out i had a movement disorder at 38yrs, i'm 42 now.
I was told to tell kids it's muscle co-ordination, i remember asking mum what if kids ask me what i have and that's what she said to say, as the doctors don't know.
I think if your son finds his own words and just says it in a natural way for him with some humor .
good luck and hope it makes a difference for him. i am so pleased he has this chance and i will be cheering for him.
maybe one day i will do a talk at a guiding event , don't know, i lead girl guides(scouts)
karen



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