Hi everyone-

I just wanted to comment on some of Trisha's comments.

In her e-mail Trisa said she and other parents wanted to hear from adults
with CP...but it seemed when we spoke some people just thought we were mad
and had repressed anger...you aksed for our input and our oppionion and our
advise based on our lifetimes of expierence with CP and that is what we were
giving you...take that and make a decision wether or not it supports or
advise or not is besides the point.

I used to be just like Amber (except diffrent type of CP)...at least it seems
that way form all the great things I hear about her all the time....hay I
even used to love track but by the time I was Ambers age could no longer do
it..I think I would really like her if I got to meet her though
e-mail...that's another thing...I think alot of us would like to hear from
the kids as well as there parents...I joined C-palsy when I was 15 years old,
it was great to get all that imupt from people who had been in my shoes.

Anyway back to my subjuct at hand...now when my attitude changed slightly is
when I started having these aging problems, because it really is a big
adjustment--it's like a whole new disability all of the suddon.  And let me
make it perfectly clear that I don't blaim my parents for any thing and I
personaly think having CP is grate.  I just have gotten frustrated as more
and more I run in to doctors who give me blank staris and also aas I learn
some of the things that contribuits to this problem and when I see that one
of the things that may contribute to this processes is very excesssive
physical therapy and the socilization consequences (good/bad or indefernt)
this was what we were advising you about from our experiences.

 Now I know that parents must do what is best in their minds for there child
and I respect that...but you guys were the ones who asked for our oppions and
got them.

And that's all we were trying to advise you parents on is thinking a long way
down the road.  Now please be clear that I love to ansewer questions from
parents, from kids and from anyone elce who has questions about CP...but the
answer you may get may be diffrent from what you were expecting...but that's
why you ask us questions to learn from our experiences...so at least  listen
to us.  We may not always phrase well, especially in hot issue areas, but we
are always willing to share.

Yours,
Anee
Webmaster of CPIC
http://www.geocities.com/aneecp/CPIC.html

<<...... It unleashed a
lot of repress anger - that I think will keep parents from coming here with
questions. Which is a shame becasue when Amber was a baby and a child - I
wanted to talk to an adult hemi - so I could use their experiences and
knowledge to help Amber - I try hard to walk in Amber's shoes - so I don't
thru good intentions make things harder.  While you guys thrash around in
your puddles - you miss you can help others. ....That whole reaction thing
was an education to me - I had ask
several of my friends (Elaine being one ) to join the list because our kids
are getting older and your experiences are valuable to our kids, and you
guys should be able to come here and vent your fury - but think at not at a
some poor parent looking for input - I don't think shooting our wounded
helps them. I wish Brianne could play hopscotch someday....Children have no
rights in this country beyond what a compassionate thinking adult can give
them. As we are all usually focused on ourselves - people forget to walk in
the child shoes and just deal with their reactions and pain. And like wise
few children ever try walking their parents shoes. There is no manual on to
be human nor how to parent.  Its a learning process, a fly by the seat of
your pants and hope you are doing the right thing. Amber -  Goddess Bless -
has enough compassion in her heart to understand when I screw up. Its a
gentleness I wish more people had.>>