Your idea (mentoring) is an absolutely worthy one!

Here is why you need to pursue this ...

I teach special ed.  Yes, I have knowledge and insight re: Moebius and
facial disfigurements, but I can only "guess" at what it was like to have c
p and be a kid.  I did a triennial IEP for a middle school girl.  I had
known Malaine for a few years - she was always smiling, joking around when I
saw her.  But I knew that one's facade can 'hide' stuff of a more critical
nature.

In doing the IEP, I included some "projective technique" questions -
open-ended things like, "It bothers me when..." or "I worry about...".
Malaine's face instantly became cloudy and she was absolutely ready to cry.
I sat and listened and did the kind of things that good listeners do -
validated the realities of what she needed to get out.  Malaine felt so very
self-conscious about using the wheelchair to go anywhere; she also hated the
way she looked when she walked.  She worried whether she would ever date or
marry or have kids.  (Does ANY of this sound familiar?)

After we talked about these concerns, I asked her if it would help her to
get to know a college aged girl who had cerebral palsy.  She instantly said
yes.  I also asked her what "stuff" was more important to her, the
'emotional stuff' or the 'learning stuff'.  Immediately, she said the
'emotional stuff'.

When her triennial came up, I repeated asked her at the meeting for
permission to talk about these concerns.  I explained to the folks there
(parents, teachers, etc.) that these were difficult for Malaine to talk
about, but very very important.  I asked them if any of them had thought
about these issues .... none of them knew anything about how Malaine felt!

I'm not her classroom teacher, so I can't attest to whether any of the goals
and objectives we wrote that day were followed through. (That class, like so
many more, has had long term subs or unqualified folks come in and "teach")

I doubt she is the only one.  There's also Andy, a good looking guy with
spina bifida.  How does he deal with sexuality when he wears diapers?  Do
you think the teachers are gonna talk to him? HA!  And there's Paulina, from
my own class (I had her almost FOUR years).  She is entirely intelligent but
absolutely nonverbal and needs help with everything.  She is a very strong
willed kid and I hope she stays that way for her entire life, but who is
going to mentor her?  BELIEVE ME, her next teacher hasn't a clue!

Must EVERY child with a disability grow up in isolation?  Is the disability
experience really a gauntlet to be run, where we honor ONLY those who still
are alive at the end?  When are adults with disabilities going to become
pro-active in advocating for kids with disabilities?