[tri-med] Re: Alex examples

In a message dated 8/31/03 7:35:13 PM, jwaite@xxxxxxxxxxxxx writes:

<< Just thought I'd throw out these recent examples for folks to maybe "get"

where Alex is. Or isn't.


I think that as a result Alex has some superior coping skills and is very

adept at camouflage to slide under radar (like laughing at jokes he doesn't

under stand).

 >>

Those are the kinds of things that come up with Dom. He loves a couple of 
soaps and has had the chance to watch them this summer and if he wasn't home, 
he 
taped them. Right now on Passions, a girl is in a basement ready to have a 
baby. Now this is someone who has acted in plays and learned script and in fact 
has assisted in scene set up and even making up some dialog. But he has asked 
me several times if she is really pregnant, having the baby, etc. And do the 
other actors know what is going to happen, etc. If it looks real, he thinks it 
should be real and the part of him that knows real from make believe is 
overruled by the that part that just accepts what he sees as what is. Watching 
a show 
like Cops is a real challenge. He really can't tell the reenactments from 
true life footage. Cops has been a favorite show for years, and I have only 
realized this summer that he truly does not know. He watches movies every day. 
When 
he does not have work to do (not at home, that doesn't count) he really has 
trouble finding a way to keep himself busy. It was so great when he was 
building his float last spring for the Memorial weekend parade. It kept him 
busy 
every day for at least three hours or longer if he had the time for three 
weeks. 
Anyone else over thirteen would have finished it in a day. Yet he works at a 
job, YMCA child care, and mostly does a good job. He thought when the boss was 
on vacation last spring that he didn't have to do "women's work," and when she 
got back he darn near got fired. He doesn't do anything just for himself. It 
is as if he doesn't have an audience, it is not worth doing. He worries that 
someday when we go to a SOFT conference, he will run into someone who is as 
high 
functioning as he is and then he won't be the only one. I have asked him if 
it wouldn't be nice to have someone to talk with who has had similar 
experiences, and he said no, he just wants to be the star. He told us several 
times 
before the conference that we didn't have to go because it really wasn't about 
us, 
it was about him. I finally told him that SOFT stands for Support 
Organization for Families of Trisomy kids. The organization was for us. Then he 
said if 
he didn't have Trisomy 18, we wouldn't be going and I told him he was 
absolutely right. But the families needed to get together because our 
experiences were 
different from most people because we had kids with trisomy and it helped us 
to share and get new ideas from each other. And he wants to go on all of the 
game shows and when he actually perceives that he might not be able to answer 
all of the questions, he wants me to go on. The boy has stars in his eyes. He 
wants to go to college, but he wants a tutor/reader who would be with him all 
of 
the time and explain everything and hopefully do the work. He wants to know 
things just by looking at them, being there, by osmosis. If it is any kind of 
struggle, he doesn't want to bother with it. I do hang onto hope for a degree 
of maturity to kick in. My hope is at some point he will get a grasp of the how 
and why of things, not just the ultimate outcome.

Nan---Mom to Dom, 19; Tri18 Mosaic, Bipolar Disorder and Ali, 19; Autism, TS, 
ADHD 
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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