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 >>