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St. John's University Cerebral Palsy List
Date:
Wed, 15 Sep 1999 16:25:07 -0500
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Hello

I was pulled out of classes to go to therapy.  At one time , I had OT at
seven-thirty in the morning.

-Kathy





----- Original Message -----
From: Anee Stanford <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, September 14, 1999 6:07 PM
Subject: Re: Walking


> Hello-
>
> I have been around many people who use wheelchairs and are not able to
walk.
> You learn to use your upper boddy to lift your self when tranfurring.  You
> have to work on strengthing your arms and being able to controll your
upper
> body.  You can use a shower chair in the shower/bath tube...you can pull
your
> wheel chair up to the sink.  I know people who cook from wheelchairs, go
all
> over the place.  A wheel chair is simply the tool you use for mobilty.  It
is
> much better to focus on use of the hands/arms as they are the most
importent
> things in ADL and for working.
>
> This surgery sounds offly radical to state it bluntly.  It sounds like she
is
> going to be spending alot of time away from friends and school.  And those
in
> my oppionion are much more important to being able to walk.  Even though I
> can walk, I use a wheelchair to go to school, and to go shopping and
stuff.
> But I have lots of friends who like your twins are in wheelchairs all the
> time.  They do very well for them selves when they are given the chance.
> Belive me I was pulled out enough for physical therapy in school and I
sort
> of whish that my parents hadent done it so much.  Because I think I would
be
> better at making friends now and being involved in the comunity if i
haden't
> been pulled out so much.  At one point I was going 3 times a week to PT
and 2
> times a week to OT.  At one point I was staying after school to do the PT.
I
> got so used to socializing with adults that I became  bad at starting
> relationships with people my own age.  Luckily enough I have never had to
> have orthopedic surgery--but I always felt sorry for my friends who did
(and
> many times did not realy need it) [by the way when I say --need it-- I am
> talking along the lines of scoliosis surgery because scoliosis can impar
> organ function  that is one instance were you need it]  because they would
> end up missing so much school and friends and socialization.  And the
thing
> was that it was being done more for the parents in the hope that the kids
> would be more normal--be able to stand, walk, etc.
>
> Everyone is normal for themselves.  It is ok to be in a wheelchair, you
can
> do most things.  Many of the people on this list use wheelchairs most of
or
> all of the time.  Some can walk to some degree, others can't walk or stand
at
> all.  But most of us are living normal lives lived by other adults.  Sure
> some of us have personal care attendents to help us with things but it is
no
> big deal--just another thing to arange.  It is a part of our lives and we
> know no other.  I know that you mean well, but rember to your daughter she
> dose not know anything diffrent and so she may not want to change as
strange
> as that my sound to someone who can walk.  And that is perfectly fine.  It
is
> not doing any harm for her not to have the surgery.
>
> The point is that your daughter should be listened to.  She is old enough
> that such a major surgery as this should have her imput, and I say if she
> wants to go to school and be with her frinds insted of having all the
extra
> pain and physical therapy that will take her away from just being her then
> she has every right not to have the surgey.  It sounds very risky and I'll
> tell you something elce the outcome is not gurenteed.  So my advise is
listen
> to your daughter.  She is the wisest one when it comes to HER disability.
>
> -Anee
> Webmaster of  <A
> HREF="http://yahoo.geocities.com/HotSprings/Sauna/4441/CPIC.html">CPIC</A>
>
> In a message dated 9/14/1999 12:25:49 PM Central Daylight Time,
> [log in to unmask] writes:
>
> << I don't know if I've been misunderstood here or what.  I am not talking
>  marathon walking, BUT, walking and being able to bear your own weight
equals
>  more independence.  Being able to go into the shower, stand up on your
own
>  two feet, hold onto a bar for balance and wash yourself.  It's basic.
How
>  many teens wants their mom to carry them (or roll them, whatever the case
may
>  be) into the shower? Right now, my daughter cannot go to a friends house
>  because if she needs to use the bathroom, someone's mom is going to have
to
>  pull down her pants and hold her on the toilet until she's done.  How
about
>  basic pride?
>
>  If she can accomplish ADL's by having this surgery, then isn't that worth
it?
>
>
>  Elaine >>
>

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