Greetings,

>I agree that we have to make people realize that Cerebral Palsy >doesn't
disappear once a kid with CP turns 13 years old.

        Now, I am curious who think it would disapear? I certainly never
have - I remember thinking when Amber was little - how is she ever going to
change her babies diaper or pick the tyke up? I have worked very hard to
minimize the effects but I have never thought it would go away. How could
it?


>Even on this list. . .
>(I'm thinking back to a post from a mother who has a kid with Cerebral
>Palsy who wanted to see her daughter playing hopscotch without her
>wheelchair).

     That statement was made as a light note in an introduction. I doubt
very seriously Elaine entertains that thought - in view of what she wanted
was the freedom for Brianne to go to the bathroom unaided. 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. Brianna's surgery is scheduled
for Tuesday and I hope some of you think to send Elaine notes and ask about
Brianna. 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. I have to admit - I
sent an e-mail yesterday to dad who is going to put his kid thru a liver
biospy seemingly so he can oersue a law suit and the child is 7 and says no
and he dismissed as just  being a kid - and I ask - would he want this done
to him and gave him your rather vitrolic responses to what had been done to
you - to help you as an an example to how she could feel down the road.
Maybe I gave him some food for thought. Some of us do everything earthly
possible to keep the kids out of surgery and some don't. 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.

>I have had people tell me that I could walk and get over CP later in my
>life and as a result I have depression and a suicidal history.:(((

   WOW - what did they think - you had sprained ankle? I am sorry you had
dumb things said to you - unfortuantely we all have. When Amber was baby - I
went to a Luthern Church and one Sunday during the social hour - I shared my
newly discovered diagnosis with a group of people. And I was told - this was
God's doing - becasue I am a bad person. I never went back and frankly - I
never want to set foot in a Christian Church again. To this day I draw a
Pentagram in the air on the doorstep - to protect me from the evil - if I
must enter such a place. Illogical!!!


>How does a person with Cerebral Palsy cope ?

         I would suspect people cope on their own individual level. Some
people are positive and cope with stuff and don't let the turkeys get them
down. Other people are negative and don't cope well, and create more sorry
and negativity for themselves. Amber has dealth with it fine - even as a
very small baby - her determination to do things over came her disablility.
I have sat and watched her reason out things as a tiny child - that prove
children are intelligent thinking reasoning beings - no matter how much
adults want to put them in pet status. I took note - of these things and
made it point to allow her to do things her way - rather than do the for
her - or expect her to do them my way.

>Does CP usually get worse ?

            CP is a generic term for brain damage in a child under a certain
age. Does the brain damage get worse - NO!!! Do the effects of the brain
damage get worse - YES  As the child grows and the body can't keep up
becasue ut is not feed the electrical impulses from the brain correctly or
not at all - as in Amber's case. This leads to atrophied limbs and stress on
joints and body parts. The stress on the body parts is different depending
on what type of CP it is - quadrapegia, diplegia, paraplegia, hemipelgia or
monoplegia - each comes with its own set of stresses. And the severity of
how one is affected and what has been done in the pst to eleviate the
effects. Amber's years of e-stim and TES have made her hip damage much less
than had she not had it. If one referred to how one was effected rather than
use the catch all term CP - this might be more apparent.

                                 Trisha