Dear Perk,

I understand, through my own "stuff" (I have Moebius syndrome - oculofacial
paralysis, club feet, etc.).  While my experiences were similar (much
teasing and social isolation at school, family didn't understand how I felt,
I didn't know where I 'fit in'), since I wasn't any of the stereotypic
disabilities - hearing, visual or orthopedic and in w/c - the whole
adjustment process was ignored and I developed a 'facade', based on what I
thought I should "be" via everyone else's ignorances.  That worked for a
while, until something would "trigger" some long-ago and suppressed
emotional trauma.  Then I would have all these emotions without words,
depression, etc.  I would think I made headway via counseling - I did, for a
while - and then something else would happen or the depression came back.
(Moebius, like cerebral palsy, is a brain based disorder - there is
hypoplasia or aplasia of the cranial nerves, which are located near the
brain's "emotion centers" - I know of two people with Moebius who HAVE
committed suicide, lots of kids with Asperger's or high functioning autism,
adults who've dealt with depression, social isolation, etc., so I am most
certainly 'not the only one')  My father and HIS father also both committed
suicide so there is a separate, genetic link to depression.  So believe me,
I understand through my own experiences what you mean - I would have gladly
traded Moebius for anything else on earth.

After the psychiatrist mentioned that my particular symptoms resembled PTSD
(Post Traumatic Stress Disorder) I looked that up on the internet, and found
someone (an MD with tons of experience in PTSD) who has taken the time to
write me in a very informed and supportive manner.  I think that the
"psychiatric community" (according to him they're no 'community' but rather
a bunch of folks who disagree alot!) - they haven't yet embraced the
traumatic aspects of having a disability.  They have for people who acquire
one, but they haven't for those of us who grow up with one.  Somehow they
think we just magically adjust.  They fail to realize that THAT (a "magical
adjustment") can be a lonely and entirely daunting, lifelong challenge!

I think that dealing with depression, for those of us with chronic
conditions, requires a number of approaches in order to sense a semblance of
emotional control.  It's like for us, our "house" (our body, mind, spirit)
is complex .... and that complexity requires a strong and supportive
foundation in order to handle the complexity of the house that it will
support.  So we need to find ways to increase the chances of an emotional or
spiritual "recovery".  Part of that is coming to terms in a heart-wrenching
way with the realities of the disabilities which we have.  That means
somehow "giving away" the power over being physically whole, non-disabled.
Not that there may be some whizbang technique down the road that can fix us,
but giving up the power over how things stand right now in an emotional
sense.  I simply cannot imagine what life would be like if I were dealing
with a number of physical limitations - the very things you are dealing
with - so I absolutely respect your thoughts on this!

After my dad committed suicide, I went to a few AA meetings, but I wasn't
alcoholic, so I stopped attending - it was "after the fact" - too late for
my dad.  Since then, I have seen, time and again, 'problems' .... the very
kind of "problems" that are read as "The Problem" in several "12 step"
meetings (Codependents' Anonymous, Adult Children of Alcoholics Anonymous).
I finally see, through a pin hole of light, a way to work with the
depression I have had (ECT - "shock therapy" has already been suggested
twice....!!!).

I don't know if any of this is helpful or meaningful for you.  I think your
message points out very clearly, the need for emotional support for children
growing up with disabilities - something that education seems to ignore or
minimize.  I've been a teacher for 28 years (past 7 in special ed full
time) - I work with kids that have severe orthopedic impairments, including
cerebral palsy, spina bifida, etc.  One of my little ones was shot last
Christmas and is now a paraplegic.  His anger and sadness is very evident.
While people can recognize HIS anger and sadness, they fail to realize that
all those other kids are dealing with feelings too, about having a
disability.

I really hope that you can find your own emotional "foundation" through good
counseling, meeting others who share similar pains, etc.  You obviously are
an articulate and intelligent individual!  You have much to offer others,
especially younger kids with the same condition, because you understand it
in ways few non disabled people can!  I think that, in time, the emotional
turmoil will lessen, and you will find a healing way to live with yourself
and feel good about who you are - I truly and dearly hope so!

I wish you well!  Take care!

Sandy