Paige,
I got to tell you it's a really fine line parents have to walk. The main
difference between your dad and myself is that I consider Alex normal, he
just has CP. When I and DH have to make decisions on surgeries and tx's for
Alex it's not to make him "normal" as he already is but to make him more
functional and comfortable. The most drastic surgery he had done was SDR
surgery, where they open the lower spine and cut nerves that cause the legs
to be so spastic. Alex was an unusual candidate to have this done as he has
spastic quad CP and it is usually done on spastic diplegic kids. His legs
were so spastic he had to use his hands to gain seating balance. Every
single moment was spent fighting for balance and not much learning was going
on because of it. It was a very difficult surgery and I'm glad it's a one
time deal. The results two years later has him sitting unassisted with good
balance. The result in school has been that he has gone from being labeled
profoundly MR to entering regular 1st grade in the fall with proper adaptive
tech supports. The surgery didn't make him smarter or more normal but it did
allow him to use his body more efficiently to show how smart he is. If there
are adaptive tools that could accomplish the same thing they are the first
choice for Alex over surgery. Sometimes however parents have to make real
difficult decisions about what really is in the best interest of the child.
Saying that the simple fact that this is their CHILD and not a disability
shouldn't get lost in the shuffle
Joanne
----- Original Message -----
From: Paige Petersen <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, April 24, 2001 12:06 PM
Subject: Re: living w/ my family


> Joanne,
>
> I thank you for writing this because you brought up something that I feel
I
> can contribute to in this discussion.  My father ALWAYS wanted me to have
> EVERY operation that the Drs. could possibly do/suggest... to "make her
> normal