My elementary exaltations of the support this group brings me personally (as
usual :D) were elegantly expounded upon by Steve.  The "support" I find here
is also what aides me in trying to " ... find myself in daily acceptance and
celebration of the primary disability that has and does cause me the greatest
pain and difficulty of my life."

Unlike Steve, I haven't quite reached the "celebration" stage.  I still
struggle with maintaining acceptance.  This is difficult for me because for
years and years I lived in denial of my disability.  I was (or thought I was
:D) a "passer."  I now find myself struggling emotionally with the secondary
debilitating conditions which interfere with my own set ideal of who I am, or
perhaps, who I was.

PEDIATRIC VS ADULT:   I've been trying to keep up with the various current
threads.  Forgive me in advance if I restate ideas, make points already
covered, or miss the gist of what's been said.

I know of late there has been some discussion on pediatric verses adult cp
issues (research/funding/difficulties, etc)  In my own experience as a child
the taunting, cruelty, and difficulties faced (including surgery/braces/PT)
were not nearly as frigtening as what I now face.

The parents who participate here act as proxy for their children.  You are
the ones who project into your children's future.  You try to utilize every
available resource to ensure your children reach their full potential (which
is natural and the right thing thing to do).  As a child, my parents also did
this worrying for me.  I only had to deal with the day to day difficulties.
The name calling.  Feeling left out, unworthy, defective.  I was also
motivated by promises of someday being "normal."  A good girl who does her
exercises, wears her braces might someday walk straight.  This of course
wasn't true.  All that was done was merely to maintain or slightly improve my
existing abilities.

Once I was older (early teens) and understood what I had was all I was going
to get (mobility wise), I did have anger and restment.  Once I finally
accepted this I was fine, UNTIL I hit about age 24 when I started to
experience all of these "secondary" conditions and I began to loose the
precious abilities I had worked so hard to maintain.

Now, as an adult, I am repsonsible for my own projections into an unknown
future.  The same fears and doubts my parents must have faced two decades
before now became mine to bear.  The only problem with this was once I began
to search for help, information, some hope or explanation - none were to be
found.

As parents you may not feel there is enough information or resources
available for your children.  Compared to that which is available to the
adult cp patient, you have ten-fold the options which are open to adults.

Just think how terrifed you would be if the medical community told you there
was nothing wrong with your child, when you KNEW they were having problems
and getting worse each day.  This is how I feel facing the future as an adult
with cp.

I would never try to take anything away from the children.  Hey, most of us
(with maybe the exception of Steve :D HA!) was once a child.  Many of us here
have children of our own and know the paternal drive where you would gladly
lay down your own life to spare your child.    I think the important issue we
need to keep in mind is (and I believe someone else had made this point, but
it is so important it is worth restating) = All of the "adults" here are the
pioneers who are helping to pave the way for the children.  If we make a
collective shout loud enough that the medical community can't ignore, perhaps
they will do the necessary research which will help prevent the cp kids of
today from facing what the adults now face.

Many of the programs the children have open to them did not exist when I was
a kid.  In fact (which I've mentioned before) I was in the first pilot
program (Title 6) which ALLOWED disabled children to attend public school.
If I'd been born a few years earlier, my parents would have had to home
school me, or drive nearly 40 miles to a childrens hospital, [or hide me in
the attic :D {kidding}.]  Mainstreaming and inclusion would not be in place
if the CP adults here didn't "storm the beaches."  The attitudes toward the
disabled have also come a long way and many of the adults here were the ones
who had to suffer through the indignities and ignorance before this change
could ever take place.

Steve said, "Every day I feel less shame about how I appear, though  old,
frail ..."

Personally, I had lived my life in denial of my disability.  My shame was
never felt because I refused to believe/accept I was disabled, despite the
daily name calling and cruelty of other children.  As an adult, no one calls
me names (at least not to my face :D)  YET,  it is now impossible to deny my
disability.  In addition to dealing with the physical problems, I find myself
more "handicapped" by my inability to accept my "new" limitations.   Each day
I struggle to hold on to acceptance.  The support of those here help me
because like Steve, I find " ...validation and joy in my CP "tribal
identity." "  Actually, I'm still working on the joy :D

Anyway, that's all I wanted to share.  Take Care, Be Well:  Denise.  PS:  HI
Mag, good to "see" you again too!