Balancing expectations/being tired - long

October 19, 2004

We are really struggling with this and would welcome any ideas you

guys have. Our problem is that we don't know what Sheldon's teachers

should be working on and how they should be doing it. We have to

rewrite IEP goals next week and want to make sure we do it carefully

so he has the best chance to learn to communicate during the next

year.

Sheldon's receptive language is catching up but he has very little

expressive language - no words but he does sign some, although he

loses signs every time he's sick. He receives OT/PT/Speech/Spec. Ed.

He just turned 3. We're getting to a point where he is upset when his

speech and spec. ed. teachers come. They are trying to get him to

move pictures around on a preschool-like schedule (all his services

are at home to reduce illness). He is very resistant to this, he

doesn't want to put the rice table picture in the container just

because they have decided he's done with that activity.

I personally see that the days when he is resistant to doing things

for them are the days when he's not feeling well - tired, headache,

something else. The problem is that he can't talk. I think he often

has headaches and doesn't want to work for them when he does. Or he's

just too tired to do anything. But all they see is him not working,

we have no way to tell the difference between when he's not feeling

well and when he just doesn't want to do something.

He also has short term memory/executive function problems which are

worse when he's not feeling well. And very delayed social skills.

The poor boy is tortured by doctors, hospital visits, meds, pain...

it makes me think he should get (almost) anything he can ask for -

and he asks for so little. Shouldn't learning be fun and shouldn't he

look forward to his teachers coming? He's only 3! I keep coming back

to this thought - if he gets sick this winter and the worst happens,

what do I want him to have been doing? Of course we want him to learn

to communicate - I just don't think it should be torture to do.

Does anyone have any ideas? What have you done with your kids? What

do teachers do with them?

Sorry this is so long. It's hard to get all the issues in one e-mail.

I'm sure I missed a lot of them. Thanks for your time.

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Stacey Fleming

flemings@...

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