Hand Flapping

[Guest guest]

Hi everyone, I'm sorry, I know that you have probably covered this

topic already, but I am in need of some advice.

My daughter , almost 6yo with CHaRGE started kindergarten

this year in a completely mainstream school, she has an aide with her

at recess and lunch to make sure she is safe because her balance is

pretty bad although she manages to walk around quite well most of the

time. She is really good with maths and can already read slightly

above the average level. Her writing is quite poor because she has

poor muscle tone in her hands, but she is getting by. She is well

liked by her class mates and by the teachers. Sounds wonderful I

know, but she is a major hand flapper. She always has been. The

problem is that she can't complete her work because she gets into a

flapping frenzy, the teacher reminds her about her work, she

immediately snaps out of it but goes right back to doing it again.

At story time (which is very exciting, I'm sure) she almost takes

off, it looks like she is going to fall off her chair. Her whole

body does these spasms, her arms and fingers go rigid, her legs pump,

her head goes off to one side, her eyes even slightly roll. It

scares the crap out of her teacher, some days the flapping is so bad

that the teacher has let her sit on her lap and she has had to hold

her arms, but then she said that her body was still twitching and

moving. It is distracting for the other children and I suppose for

the teacher too. The thing is, if you tell her to stop, she can snap

out of it, but she just goes back to doing it anyway, but that makes

me feel like she can't help doing it, but it isn't a fit. I don't

know, I really don't know!!

Is there anyone out there that might be able to give me some ideas???

I have made an appointment for her to see Dr next

week, he is the doctor of all doctors of CHARGE syndrome over here in

Australia, I would like to have some of your ideas before I see him.

Thanks so much for your help.

, Sydney, Australia