[tri-med] Re: My first school question


----- Original Message -----
From: <Madjake00@xxxxxxx>
> Now to my question....I had to fill out a little registration
questionnaire
> about her and one question was "is there anything we should know about
her?"
> And now to the "do I tell or not tell" dilemma.  She has no physical
problems
> they would need to know about and so far seems to be developing age
> appropriately.  She is talking (non-stop), she can count to 20, can say
the
> alphabet and can identify almost every letter of the alphabet.  I think
that
> is what most kids her age can do.
>
> I opted not to write anything about the trisomy on her application, but do
> you think I should our shouldn't tell the director?  I know that since we
> live in the gray area of trisomy that it's going to be a question for her
> entire life.

Gee Kristin, I bet you're surprised that I'm responding to this! rofl

I'll try and do the readers digest condensed version.

When Alex was an infant/toddler we didn't keep the trisomy dx to ourselves.
But when we began looking at school (did preschool and the director
recommended testing for Alex and he ended up in PPI) there were a few things
that caused us to take the road of caution.

Jim has a Bachelor of Fine Arts in theater. When we got married he was being
the technical director of plays in 2 school districts. In the town were we
live he was involved in a musical and many teachers were involved also. One
was someone Jim had been a student under and someone he respected a lot. And
Jim doesn't just give out his respect easily. Anyhow, they were discussing
the male lead of "Oklahoma" and 2 boys were up for it. Jim wanted this one
young man and the teacher he respected said, "Oh, he's a special ed student
so we don't want to give it to him". Jim replied that perhaps that made this
young man deserve a chance to shine but everyone else disagreed.
Interestingly, I was preg for Alex at the time and unaware of trisomy. Jim
came home that night so upset................and disappointed. And a seed
had been planted that would bloom after we had our son.

Secondly, we had a medical suggestion that perhaps we should not tell the
school district initially. Let them assess Alex. See what they do. Don't
give "them" ammunition to put a glass ceiling over our son. Yet know that if
and when the trisomy dx would benefit Alex we could do it then. You can hold
the info back and share it if necessary. If you share the info straight off
you can't take it back.

So into school we go. They've done their testing and Alex receives services
based on that.

In a perfect world we wouldn't have to worry about things like bigotry and
stupidity or fear. But we do.

Jim and I took the road that it's our job to do the best things for our
children (not always the best thing for us...nor the easiest but WE are the
adults). Looking at the big picture when Alex was starting school we didn't
have ANY idea how far/how well he would progress. But we wanted to give him
every advantage possible. That's what we think we've done. In my heart I
believe that if the trisomy dx was known Alex would not have the LD
(learning disabled) label but have the EMI (educably mentally impaired)
label. And if you recall a discussion along this line on the med list about
a month ago it would make a bit more sense. Yes, it's semantics but it's
also about perceptions.

Re: "not telling":
I've had parents tell me that they wish they'd done the same thing.
I've had parents tell me that if they had a gray zone trier they'd DO the
same thing.
And there are parents who feel that by "denying" the trisomy we're not
educating/furthering the cause of trisomy acceptance out in the world.
Bottom line, our child comes first.

Like everything else, we have to look at our child and our situation and do
what we think is best.

If not for the gray zone, the school would know about Alex's trisomy 14.
 But this gray zone is someplace there is little known about. Back when we
were making these decisions there was no Internet, nobody to get ideas from
or share concerns with or gain support. We were fudging it alone, after all,
the geneticist told us Alex was the only living child "like that".  It
wasn't that many years ago there was no mainstreaming and special ed
students were segregated in different buildings. Esp when you look at
1987...not that long ago at all from when Alex was born.

Gray zone..........something only a few of us live.......but like everyone
else we're doing the best we can.
I wish I didn't have to be secretive about the trisomy. I wish I could
celebrate the wonderful miracle that Alex is. But that's about ME and not
Alex. And I do have my outlets. Alex and I have made a difference in some
lives (or so I've been told!).

Look at school experiences that those on the list have. Look at Hannah. Make
a list. Talk with the hubby. Explore the different options and potential
outcomes. Then decide what is best for Hannah.

My suggestion though (since you asked) is DON'T tell them right now. Place
her into preschool and see how it goes. You can always change your mind
about telling the school district later. You can't ever put the genie back
into the bottle once it's out.

So, did that help at all????????? lol

Michelle mom to Alex (15,partial trisomy 14 mosaic) and Molly (12)
MichiganUSA


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

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