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Lois!

WELL SAID!! Wow! I have been trying to say that for months but could just

never formulate it into words!!!! You expressed it so well!! I totally agree

with you! We really need some clinical studies done on the TYPE and FREQUENCY

of therapy. We all believe in it and have seen it work.....BUT.... many of us

have seen it NOT work and have seen our children regress and react negatively to

the wrong TYPE of therapy. But we seem to have nothing specific to back us up

in our requests for the appropriate services. Yesterday I sat in a 1 1/2 hr.

IEP update meeting in which I was trying to make this very case to the

school.....I am concerned about the RATE of my son's progress (he is

progressing....I just feel in my gut that he is losing ground, not staying

close to his age peers like he was at age three when he finished EI) and my

point is: could it be related to the type or frequency of his therapies? I

honestly don't think the team can hear what I am questioning....even the case

manager wrote the notes saying I think there is a " lack of progress " . They

were all in favor of behavior charts for working hard in therapy, saying he can

do it, you just need to expect him to do it and give him " the look " because that

works for them during the 45 minutes a week they see him. Finally, because I

disagreed with them, the special ed. director says, " Well, I have worked with

" globally apraxic " kids before and he doesn't present like that to me, he looks

more like Aspergers Syndrome, so lets pay for you to take him to any team you

want Carol and get the " medical " slant on this!!!! " And that was the end of

the meeting! I might add that the nuerologist was the one who diagnosed him

with " global dyspraxia " but who also told me, it wasn't much of a diagnosis,

more of a description......which is the same that they say about " hypotonia " and

" sensory integration dysfunction " . And I have had the autism spectrum ruled out

three times! HOW COULD SO MANY OF US HAVE KIDS THAT SOUND THE SAME OR VERY

SIMILAR AND THE MEDICAL AND EDUCATIONAL ESTABLISHMENTS NOT KNOW WHAT TO CALL IT

OR HAVE AN ACCEPTED WAY TO HELP OUR CHILDREN???? thanks for your great post

Lois!

I hope that someone sees these posts and helps us out! Carol

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