[tri-med] Re: Strabismus and more............


----- Original Message -----
From: "Michelle Wilson" <mewildflower@xxxxxxxxxxx>
> Hi Karen, I think your glasses sound COOL!  They could only sound better
if
> they were the granny cateye shape with rhinestones!!  I had a pair of
> sunglasses like that once....

As if THAT'S  a surprise Michelle! lol


>.  Speaking of strabismus though, Faren will be having another eye
> surgury on July 23rd to once again try to fix hers.

The poor pumpkin. She's really had it lately. Faren is due for some GREAT
news.

>.  She truly needs every
> advantage she can get.

That's where I drive myself nuts with Alex.  :-(       If I'm not trying to
help/give him every advantage then I feel like a failure. I am working on
that because none of us can be "on" all the time. And sometimes trying to
decide on the best route to take with our special needs kids......yikes! I
get sick and tired of doing "on the one hand" sometimes. Gee, am I sounding
IEP/school stressed out? lol

We finalized Alex's IEP today. Got the goals and accommodations in place.
Not sure how I feel. It was a lot of that "on the one hand" stuff and trying
to juggle the whole child's needs and not just specific areas. In an ideal
world we could do both but to do that I'd need a lawyer and it would prob
end up costing more than just paying for Sylvan out right. We believe the
Sylvan work will be more what Alex needs specifically then anything the
school would create. Added to that, Alex does NOT want to be in spec ed if
we can help it. His friends are all gen ed students.

To that end he's got an all gen ed schedule next year. There's an "extra"
class to support lit and comp for all students who have some struggles and
the science class is one between the gen ed and reg ed class. Just right for
Alex I believe. Math isn't highest end nor lowest end. We're holding off on
social studies until next year.

This all means that this year he has a teacher consultant (TC) and not a
spec ed teacher following him. More will be Alex's responsibility to seek
out the help BUT he's really great about doing that anyhow. More like the
real world I guess. I'm worried about less support but it will give us a
view of how Alex will respond.

I'm scared about the whole thing next year, high school...geeze louise...
but we'll see how he does and if it's not working we can call an IEP and
change things. Do wish we'd had a bit more in the accommodations that I
wanted but they refused on various grounds---apparently hs is a different
game because of GPAs and an all gen ed class load and teachers who would
fight it. Sometimes fighting accomplishes what you want but at a price to
the child. Since I'm not sure of just WHAT he needs it's a wait and see game
at this point.

 I'm more satisfied than dissatisfied.......and wondering if I'm being
stupid for not going to war. Guess I'd battle up if I thought it was the
best route but not being sure...........

Just slap me silly and shake me out of this!!!!!!!!!!

Michelle mom to Alex (14, partial trisomy 14 mosaic) and Molly (11)
MichiganUSA


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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