In a message dated 6/18/01 8:37:28 PM, jwaite@xxxxxxxxxxxxx writes:
<< Has anyone told their child of the trisomy (Nan?)?
Is anyone aware of any books etc that might be helpful?
>>
Since Dom had to wear the Milwaukee Brace for so long because of his
scoliosis, he learned early on how to answer when asked why he was wearing
it. He would tell people he had scoliosis and he had to wear the brace to
help his spine grow straight because it was kind of crooked. With little
kids, he would tell them that it didn't hurt and he was used to wearing it.
On a good day he would handle it well, but if he was in a crummy mood, he
might not even answer at all. The why of the scoliosis was because he had
something called Trisomy 18. If there were further questions, if they had an
answer, he would tell them, but if he didn't know, he would just say "I don't
know". Of course, I now wish we had gone the same route as you, Michelle, and
not ever told anyone about the T 18, but by the time I was aware that people
would measure him by the dx and not by the person he is, it was too late. He
will be with me at the convention and those who meet him will see why these
days folks find it hard to believe that he has T 18 mosaic or any other
description. He knows his short stature is because of it and is still hoping
that we can still get in on the growth hormone. He was supposed to see the
endocrinologist in February, but we had to cancel because he was going
through a very difficult period behaviorally. Now he is back in San Diego and
we are working on a home reunification. Three to six months and he should be
home. Gotta go call him now to say goodnight.
Nan---Mom to Dom, 17; Tri18 Mosaic, Bipolar Disorder and Ali, 17; Autism, TS,
ADHD
Building ___ooOOoo__ Rainbows
www.trisomyonline.org
Families Helping Families On-line