Greetings ,
----- Original Message -----
From: Trisha Cummings <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, October 30, 1999 10:34 AM
Subject: Re: Aging with CP (was pain)


> 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?
> Some people think or hope Cerebral Palsy will disappear.
>
> >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.
> Thanks, Trisha!
> >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!!!
> Trisha, (((hugs))) Two people really hoped (wishful thinking).  I'm a
strong Catholic.
>
>
Kathy




>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
>