[tri-med] Re: looking for ideas/suggestions


----- Original Message -----
From: "sibbe" <sibbe@xxxxxxxxxxxx>

> hi Michelle, Yes I have told Jolene that she has special chromosomes, that
> she has a little bit extra. She seemed to accept that explaination. She
> doesn't think that she has a disability.

Even though Alex is smaller than his peers and he knows he has a learning
disability he doesn't view himself as any different in a major sense but as
"different" as in each person being an individual.

> It is such a shame that these children have been
> mainstreamed for all of their schooling and then they are put into
sheltered
> workshops.

That is one of the reasons we are working ourselves hard to try and make
sure Alex get's as much out of school as he can so that he has some
"choices". Alex does not have any school diagnoses of mental impairment as
his testing (including IQ of 74 which is JUST within normal range) don't
tell them that.

Alex lives in the gray zone of trisomy land..one foot in the typical world
and one foot in the trisomy world. He passes through life as a typical child
for most intents and purposes. Nobody looking at him or spending a lot of
time with him will say "hmmmm...that child is "different". They might
realize he's not as "with it" as others his age but he that's it. Unless you
give him age appropriate school work or reading and then you'd say "he's got
some problems". But he's a hard worker and nice kid.
Just last night at a scouting function I had a mom come up to me and say
"Alex is such a nice boy, you must be proud of him". A few months ago on a
"hike-a-thon" weekend Alex was in charge of the new scouts who had just
crossed over into the Boy Scouts and joined their troop. He was in charge of
teaching them the skills to get their "Toten Chip" cards. These cards give
them the right to use saws, hatchets and their pocket knives. After he's
worked with 8 of them that weekend, adults tested the boys and they got
their cards last night. Alex was taken up and recognized as being
responsible for their "training". Silly but I was so thrilled.....others
there had no clue as to what that meant to me.  :-)

> I am trying to find some supported employment for Jolene but it
> is really slow to happen here.

Doesn't your school help with placement? I know that is part of the high
school experience here.......they help find places for students who may be
unable to do so on their own.

>Jolene had a nice boyfriend for four years
> and he died suddenly last August. She was devastated. However she now has
> another boyfriend.

Oh, poor Jolene!      But I'm glad she's found another companion.....is Mom?
haha   That dating stuff scares the stuffing out of me!

 >She tells me that they are going to go flatting together.

Ok, I'll bite, what's "flatting"?

Michelle mom to Alex (14, partial trisomy 14 mosaic) and Molly (10)
Michigan USA

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

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