Joanne,
I realise you're hurt and angry -- but please don't let that little toad get
to you. He's immaterial; you are Alex's parents and know him better than
anyone else. Hang in there; I'm with you.
Kathy S.
----- Original Message -----
From: "jd" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, November 10, 2001 5:55 AM
Subject: Re: ableism
> --- 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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