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 >> >