[tri-med] Re: My first school question


----- Original Message -----
From: <Madjake00@xxxxxxx>
>Once I knew she was physically okay I have
> been obsessing on this point.

I had to laugh because it is sooooo true! I can remember reaching the "ok,
he's not going to die on me any moment" feeling to "ok, now we have to deal
with this developemental/educational stuff". And finding a whole new set of
concerns, fears, worries and heart breaking thoughts/decisions to start on.

 > When I was in school (finished 6th grade in 1984) I remember the sp ed >
classes and also remember how unbelievably cruel kids treated them.  >That's
> all that went through my mind when hannah was little.  I couldn't bear
>that.

From what I've observed over they years things are better.......but the
elem/middle school in our district don't contain classrooms for the severely
disabled (educationally/emotionally). Those students go to another school.
So that level of special needs I've not seen in schools much.

There was a boy in Alex's grade for a while. He'd had brain tumor surgery at
age 2 and damage was done. This child has educational/behavorial
issues--quite severe. By grade 3 he was throwing desks and threatining to
kill students who ticked him off-----he couldn't be reasoned with. Many
parents began complaining loudly that their child's education was suffering
and they were in physical danger. The school then placed him with a spec ed
teacher except for specials (music, gym, field trips etc). By grade 7 his
parents placed him in the special school.
This child wasn't accepted by parents, teachers or students, mostly based on
his emotional issues and not his educational issues. The parents were doing
the best they could.........this boy was/is in Scouts with Alex. They are
involved and caring......but exhausted. One day the mom told me (he is their
first and they have another son) that if she knew what her life would be
like she would  never have had children. She says they have nofamily life.
I wonder if they lives would have been different with more understanding,
support........just some help. They don't get any from their families. I
helped her out in a daycare crunch when the boys were in 5th grade (he'd
been kicked out for biting) for 4 mornings before school. It scared me but I
did it. And he did fine. But even just 1.5 hrs of constant vigelence each
morning(he has to be watched ALL the time) was exhausting. I can't even
truly imagine what his parents must feel 24/7 and now for 14 yrs.
What scared me about this experience/knowledge is that sometimes the PARENTS
are the crux of the problem. I've had experiences that there have been some
delicate sideways slams about Alex holding kids back who have to work with
him in groups etc. Sometimes our special needs kids are a threat to parents.

I know that I've told this story before but........

We got the trisomy dx when Alex was 12 months old. Two months later we were
out walking the neighborhood and a group of middle/high school girls were
walking home from school. The caught up with the stroller and "oohed" and
"ahhed" over Alex who looked like he was just a few months old. The were
being very sweet/cute girls and we were talking. Then this blue bus drives
by. And they begin chanting "tardo bus". I didn't understand what was going
on and asked. One replied "that the bus for the retarded kids". I quit
walking and they giggling went on their way. I turned toward home and as
soon as I hit the door began sobbing like crazy and probably crushing Alex
in my arms hugging him so tightly.
It was the first time that I saw the world in context to Alex and his
situation as he would/could live it. And it just nearly killed me.
Definately broke my heart. Imagining a life including that type of ridicule
and torture was NOT what I had planned for my child. And knowing that I was
powerless to protect him 24/7 out in the world.........just a nightmare.

>.  I am not telling
> until I have to, if I have to.

Just remember, no decisions are written in stone Kristin!

{{{{{Kristin}}}}

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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