--- Matt Conaway <[log in to unmask]> wrote: > Please spare me the pity and the bleeding heart, > Joanne. Parents like > you are the problem. Just because your kid isn't > perfect, you feel that > everything and everyone, including your kid, must > bend over backwards to > meet your own little ego trip. And what little ego trip is that Matt. Since you're inability to comprehend the written word due to YOU projecting YOUR feelings on Alex's upbringing, let me break down what I wrote for you "Oh please give me a break.Do I want to "fix" Alex? Heck no, he is a terrific little guy in his own right." Those weere my opening two sentences. How did you miss them? Alex is more than his CP and his medical problems, much much more. > Outlooks like that > is how Nazi medical > experimentation wields its hoary heads. Naturally, > all Nazis were > able-bodied and "superior".Everybody else in the > Reich did not meet > standards. Uninformed and forced medical treatment is indeed wrong Matt.Any treatments we've ok'd for Alex has been throughly researched as much as possible. I get second opinions and talk with others who've had it done themselves or whose children have done it. You may say I'm doing the same as the Nazi's since ALex doesn't have a say but guess what, those decisions were life and death decicions. Adquete nutrition is required for physical and cognative devolopement. ALex was at the point physically that his school PT refused to do any PT on him because he was burning muscle just to exist and that included his brain and heart muscle.He had one cardiac arrest already why would I but him at risk for another. He was all of 18 mo old Matt and the surgeons waited that long and till he was that medically needy because he had brain damage and get this... because he was happy and interactive with them (despite the fact that he didn't have the energy to move interactively). Because he was happy Matt( doctors words) he didn't need to proper nutrition and it was ok for him to continue vomiting. Because he was happy and well adjusted but brain damaged. What I wanted was for him to have the chance to grow up and go through a brat period and ultimately grow old enough to make his own decisions. Choosing the SDR was the hardest decision we had to make for Alex. It took over 2 years of research and consulting and speaking with others whove had experience with it to decide to go ahead and do it.It was the single best decision we've made for him in his overall devolopement. It was not made with the thinking that it would allow him to walk( although if he did it would be a great big perk)It was done to enable him to function more effeciently in his life. He is NOT walking independantly, most likely he never will and most likely walking will never be his main method of locomotion. By lessenening the leg spasticity( not eliminating it) he longer struggles to stay upright with sitting. He no longer has to use his hands to maitain balance.He doesn't need straps and harness's to hold him in place like he did before. He can use them to perform school tasks like throwing a ball back and forth with his classmates. He is in a regular 1st grade classroom because he belongs in a regular first grade classroom. He is still spastic just less than before. He can hold a pencil and write his name and practice writing his letters and numbers. Using a pecil/pen will never be his main method of writting either, using a keyboard will but the sdr allowed him to do that as well. I investigate all new/old treatments as I become aware of them. Most I reject. HBO is one. It would require traveling and a constant disruption of his routine to take the treatments. It would disrupt our family life( Alex is the youngest of 7)and my other children are equally deserving of my time and resources. His sibs and Alex also deserve a chance to interact with each other as siblings do and that isn't possible if I chase every claim of cure for him. > > As for Alex's medical problems, he should get > interventions. But, that > not-being-equal-with-peers crap has got to go. > Guess what? He may NEVER > be equal with his peers!! >So what? Is that what > you really want for him, News flash for you Matt. Alex IS equal with his peers right now and since the day he was born.Having CP does nothing to change that. He has feelings and he has needs just like his peers. He also responds to the needs and feelings of his peers. Why would CP change that? > a lifetime of always feeling like he doesn't quite > measure up? I can > tell you that is a horribly destructive way to think > and to be. I did 27 > of my 33 years of that and won't do it again. Do > you really want your kid > to feel that bad about himself and struggle with a > major inferiority > complex for life? Think very carefully. This is > YOUR son. > Matt > > Alex is 6 1/2 years old now Matt. He has been through all those medical interventions and a few more and guess what...He is still consider happy and a delightful kid to be around by the medical staff, his teachers and his peers. At school he has been invited to birthday parties( of course after we get there the parents tend to freak a bit because thier kid forgets to tell them ALex will arrive in a WC and isn't the least bit fragile but that is how his peers veiw Alex...just one of the gang) and at the parent/teacher confrence I learned he has a bevy of kids fighting to sit by him because his sense of humor makes them laugh and he makes them feel good. Our family is very sports competive. With 6 boys hockey is the choice of sport. Alex wants to skate and play to. We've found a place that makes skates especially to fit over AFO's and there are now skating aids that look like a Kaye walker that is used to teach even the typical kids to skate. He wants this and you bet we're going to give him a chance to do it. He won't play hockey with the youth teams like his brithers( thanks goodness, one of boys has a chance to be normal) but we've started him with horeback riding. The HS has an equesterian team so he can earn a varsity letter like his sibs when the time comes( if he chooses but I also expect him to earn his academic letter first, just like his sibs)and it has the added benefit of helping with the spasticity and balance as well. I've fought with the doctors and even with my own family( my oldest bro is a nuero-psych)and I fully intend for Alex to grow up knowing this...Alex is a normal everyday kid who happens to have CP. He is NOT the CP kid. I make no apologies for the way I raise my kids, they've done well for themseves and I'm proud of all of them. COme back and talk to me when you raise yours. Joanne __________________________________________________ Do You Yahoo!? Find a job, post your resume. http://careers.yahoo.com