Dear Joanne,

From being on 'both sides' of the experience (HAVING a disability and
TEACHING kids with disabilities), it is, quite frankly, as though the
professionals I know who work with special needs kids don't even realize (or
even acknowledge!) that the kids have these thoughts!  I am NOT saying that
in their detriment - this is a topic that is NOT well discussed in special
ed classes at all (IMHO).  It's as though professionals expect kids to have
no feelings about not doing this or that.  But they won't come right out and
say this directly, but it just is NOT your average topic for discussion.

I know, with Moebius syndrome, there's the biggies "when does the child
realize he/she can't smile?", etc.  I KNOW that one was something I dealt
with ... and I, as that little kid, could NOT understand why others didn't
realize this was an important thought!  So when I got weird looks, comments,
etc., I quickly learned I had better shut up and stop feeling sorry for
myself because I should NOT feel this way. A lotta good THIS did!

I'm hoping to  get something going, disability awareness-wise, soon that
will really address the kind of thinking that little kids have when they
have disabilities.  For a kid with cp, its gonna be related to whatever
isn't working right - feet, legs, arms, mouth, etc.  For the kid with spina
bifida, its the bathroom and lack of feeling.  For the kid with Moebius, its
the facial paralysis, etc.

I would hope you can find someone who has some similar experiences as your
child - someone who can say (and MEAN it) "I know what this feels like ....
" and can describe how s/he felt at about the same age, thinking the same
thoughts.  Your child deserves to know that his thinking is normal! Same
with his feelings!  And I would bet that the person who mentors your child
will be able to help YOU with that knife-twisting feeling you had when you
heard what was said ...

We had an EXCELLENT presentation at our recent Moebius conference - by Mark
Katz, Ph.D.  He is the author of "On Playing a Poor Hand Well" - a look at
how people deal with the struggles in life and come out 'ahead', or turn
their lives around after some difficult times.  The book is avaiulable on
amazon.com.

Ultimately, it's not the particulars of a disability that are the
challenge - its the inability to put things in perspective and learn to live
with what hand you've been dealt.  I am sure that for parents, everything
seems so "linear" at first ('oh no .... this wrong .... and this .... and
this ...., etc.")  That is true, to a point.  But somewhere along the line,
that child wants to find out how to put it all together and live with what
has happened.  And THIS is where there IS no paralysis or deformity or
difference ... this is where that child, with help, learns how to put the
pieces together and see the worth and integrity inherent in who s/he is,
apart from having all those "dis"abilities.

So find those kinds of people for your kids - the kind that can see well
beyond the "dis" and on to the "ABILITY".