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Subject:
From:
Charles Darr <[log in to unmask]>
Reply To:
St. John's University Cerebral Palsy List
Date:
Thu, 16 Sep 1999 14:21:02 -0400
Content-Type:
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Dear Anee,
As a mom of a 4 yr old son who just happens to have spastic quad CP and
other disabilities I can understand what you are saying about being OK just
for who you are.  If I understand you correctly you are saying that YOU are
more than the sum of body parts that may or may not work well.  If so I
whole agree with you.  On the other hand as a mom who had to make the
decision on whether to subject Alex to SDR surgery this summer I also don't
find the issue as black and white as you put it.  The SDR surgery was not to
"fix" Alex.  I didn't have it done to cure his CP.  As of right now I don't
know anything that will cure CP.  I did it with objective of significantly
reducing the spasticity in his legs and to have him derive the benefits from
that reduction.  Was the surgery worth it? You betcha.  Before SDR Alex had
trouble maintaining a sitting position.  I'm sure you can sympthasize with
the fact that it is really difficult to learn and pay attention if you are
always struggling just to maintain balance.  Sure I can strap him down tight
every where he goes but it just presents another even worse problem in my
eyes.  A child as young as Alex needs to explore his world.  It's a young
childs main learning at this young of an age.  A WC etc, much less a kid
strapped down not only prevents a child getting up close and personal but I
think it also prevents others from approaching.  The SDR hasn't made him
capable of walking.  He does sit with much more balance and can now use his
hands to do something else besides balance.  This year he is trying out his
first "wheels" with a mobile stander.  This puts him in an upright position
with with abled classmates and allows him the independence to get around.
The WC will be on the agenda next when it is an appropriate stage/age.  The
point is as parents, we are not subjecting our kids to needless surgeries
because of a need to fix them or make them normal, but to maximize the
potential they do have.  Much as you choose a WC or other adaptive equipment
to maximize your potential, surgeries that are done after a lot of research
and hopefully without false expectations ( that's the hard part for a
parent) are done simply in hopes that life will be easier and more
comfortable for their child.  I did my research, PT, surgeries, the BPump,
meds or simply go along as we were.  The surgery seemed the best option Alex
and his lifestyle as it exists today.  He doesn't hate me.  He doesn't
scream very time he see's a white coat.  He is growing, thriving, learning
and interacting well with others.  Like you said isn't that what's
important?  The surgery didn't fix him but improved his ability to be the
best he can be.
Joanne

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