--- Matt Conaway <[log in to unmask]> wrote:
> Please spare me the pity and the bleeding heart,
> Joanne.  Parents like
> you are the problem.  Just because your kid isn't
> perfect, you feel that
> everything and everyone, including your kid, must
> bend over backwards to
> meet your own little ego trip.

And what little ego trip is that Matt. Since you're
inability to comprehend the written word due to YOU
projecting YOUR feelings on Alex's upbringing, let me
break down what I wrote for you

 "Oh please give me a break.Do I want to "fix"
Alex?
Heck no, he is a terrific little guy in his own
right."

Those weere my opening two sentences. How did you miss
them? Alex is more than his CP and his medical
problems, much much more.




 > Outlooks like that
> is how Nazi medical
> experimentation wields its hoary heads.  Naturally,
> all Nazis were
> able-bodied and "superior".Everybody else in the
> Reich did not meet
> standards.

Uninformed and forced medical treatment is indeed
wrong Matt.Any treatments we've ok'd for Alex has been
throughly researched as much as possible. I get second
opinions and talk with others who've had it done
themselves or whose children have done it. You may say
I'm doing the same as the  Nazi's since ALex doesn't
have a say but guess what, those decisions were life
and death decicions. Adquete nutrition is required for
physical and cognative devolopement. ALex was at the
point physically that his school PT refused to do any
PT on him because he was burning muscle just to exist
and that included his brain and heart muscle.He had
one cardiac arrest already why would I but him at risk
for another. He was all of 18 mo old Matt and the
surgeons waited that long and till he was that
medically needy because he had brain damage and get
this... because he was happy and interactive with them
(despite the fact that he didn't have the energy to
move interactively). Because he was happy Matt(
doctors words) he didn't need to proper nutrition and
it was ok for him to continue vomiting. Because he was
happy and well adjusted but brain damaged. What I
wanted was for him to have the chance to grow up and
go through a brat period and ultimately grow old
enough to make his own decisions. Choosing the SDR was
the hardest decision we had to make for Alex. It took
over 2 years of research and consulting and speaking
with others whove had experience with it to decide to
go ahead and do it.It was the single best decision
we've made for him in his overall devolopement. It was
not made with the thinking that it would allow him to
walk( although if he did it would be a great big
perk)It was done to enable him to function more
effeciently in his life. He is NOT walking
independantly, most likely he never will and most
likely walking will never be his main method of
locomotion. By lessenening the leg spasticity( not
eliminating it) he longer struggles to stay upright
with sitting. He no longer has to use his hands to
maitain balance.He doesn't need straps and harness's
to hold him in place like he did before. He can use
them to perform school tasks like throwing a ball back
and forth with his classmates. He is in a regular 1st
grade classroom because he belongs in a regular first
grade classroom. He is still spastic just less than
before. He can hold a pencil and write his name and
practice writing his letters and numbers. Using a
pecil/pen will never be his main method of writting
either, using a keyboard will but the sdr allowed him
to do that as well. I investigate all new/old
treatments as I become aware of them. Most I reject.
HBO is one. It would require traveling and a constant
disruption of his routine to take the treatments. It
would disrupt our family life( Alex is the youngest of
7)and my other children are equally deserving of my
time and resources. His sibs and Alex also deserve a
chance to interact with each other as siblings do and
that isn't possible if I chase every claim of cure for
him.


>
> As for Alex's medical problems, he should get
> interventions.  But, that
> not-being-equal-with-peers crap has got to go.
> Guess what? He may NEVER
> be equal with his peers!!
>So what?  Is that what
> you really want for him,


News flash for you Matt. Alex IS equal with his peers
right now and since the day he was born.Having CP does
nothing to change that. He has feelings and he has
needs just like his peers. He also responds to the
needs and feelings of his peers. Why would CP change
that?

> a lifetime of always feeling like he doesn't quite
> measure up?  I can
> tell you that is a horribly destructive way to think
> and to be.  I did 27
> of my 33 years of that and won't do it again.  Do
> you really want your kid
> to feel that bad about himself and struggle with a
> major inferiority
> complex for life?  Think very carefully. This is
> YOUR son.
> Matt
>
> Alex is 6 1/2 years old now Matt. He has been
through all those medical interventions and a few more
and guess what...He is still consider happy and a
delightful kid to be around by the medical staff, his
teachers and his peers. At school he has been invited
to birthday parties( of course after we get there the
parents tend to freak a bit because thier kid forgets
to tell them ALex will arrive in a WC and isn't the
least bit fragile but that is how his peers veiw
Alex...just one of the gang) and at the parent/teacher
confrence I learned he has a bevy of kids fighting to
sit  by him because his sense of humor makes them
laugh and he makes them feel good. Our family is very
sports competive. With 6 boys hockey is the choice of
sport. Alex wants to skate and play to. We've found a
place that  makes skates especially to fit over AFO's
and there are now skating aids that look like a Kaye
walker that is used to teach even the typical kids to
skate. He wants this and you bet we're going to give
him a chance to do it. He won't play hockey with the
youth teams like his brithers( thanks goodness, one of
boys has a chance to be normal) but we've started him
with horeback riding. The HS has an equesterian team
so he can earn a varsity letter like his sibs when the
time comes( if he chooses but I also expect him to
earn his academic letter first, just like his sibs)and
it has the added benefit of helping with the
spasticity and balance as well. I've fought with the
doctors and even with my own family( my oldest bro is
a nuero-psych)and I fully intend for Alex to grow up
knowing this...Alex is a normal everyday kid who
happens to have CP. He is NOT the CP kid. I make no
apologies for the way I raise my kids, they've done
well for themseves and I'm proud of all of them. COme
back and talk to me when you raise yours.
Joanne

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