VERY well written Joanne. Don't know that he'll see it-or care- maybe you can send it to his email acct. I do applaude you! I come from having CP, to teaching kids with CP, and now working with adults with CP. CP is so individual! Paige >From: joanne <[log in to unmask]> >Reply-To: joanne <[log in to unmask]> >To: [log in to unmask] >Subject: Re: Farewell >Date: Thu, 26 Apr 2001 20:00:50 -0400 > >Dear Jonathon, >Since you seem to address this to parents of children with CP I feel that I >am more that qualified to address your post. You say you have mild CP. It >would have been nice to have let us know just what physical limitations the >CP has on your life. Are you an independent walker? Use mobility aids? Is >your speech effected? How about muscle control within the digestive system. >What medical procedures have you had pertaining to your CP. How did you do >in school? Are you able to do handwriting without needing special tools. >How >about eating. Are using utensils easy or do you use adaptive utensils. >CP is one of those conditions that have such a wide variation in severity >and how it effects a body from mild to very severe. It's quite egotistical >of you to assume to know how CP effects my son or Magenta, Paige, Steve, >Carla or the others on this list or that it effects them no differently >than >you and they are just wallowing in self pity. Maybe you are simply in >denial. >My son who is 6 yo has spastic quad CP. He has had to have a feeding tube >as >well as surgery that prevents him from vomiting because his reflux was so >severe he failed to thrive.Reflux is common with CP because it involves >muscular control.With out proper nutrition it also effects cognitive >ability >as well as physical strength. He has had neuro and orthopedic surgeries to >enable him to use his body to his fullest ability which is still limited >in >scope. I can go on and tell you how "bad off" Alex is but that really won't >tell you about Alex will it. In those 6 short years he has faced and >conquered more challenges than I've faced in my life time. All the same >that >WC does effect the publics perception of him and is usually wrongly. Can't >tell you how many times people speak very loudly to him thinking because >his >legs don't work well his ears must not either. That just sets off the CP >startle response in him. I am indeed worried about his future. You are >right he is remarkably adaptive. The world as a whole is not. Your >grandfathers comment that you have to adapt yourself to world and not the >world adapt to you isn't quite right. Relationships are a two way street. >Common courtesy will make effort ( adaptations if you will) go a long way >to >make sure all are able to contribute to society to the best of their >ability. For many like my son, adaptations are what makes it possible to >participate. His contributions should be no less important because of those >adaptations. >As for telling children to worry about what they can control as oppose to >what they can't, how in the world will they ever know what can/can't be >done unless they try and that includes using adaptations. >It's also hard to make my child interact with other children when he spent >the first 3 years of his life in and out of hospitals just trying to >survive. It's hard when parents pull the other kids away because they >think >what ever Alex has might be catchable or that he is too fragile,retarded >etc >to play like a normal child. The world is changing but that is because >parents and other advocates don't buy your theory that things can't be >changed and they should just go with the flow.. >As far as your advise to the kids that this too will pass...what will? His >CP? His youth? His need for adaptations?The worlds perception of >disabilities? >So just out of curiosity just what would you have liked discussed? And why >didn't you ever post to start a thread for discussion. How easy to >criticize >when you don't put yourself on the line. >Joanne >----- Original Message ----- >From: Jonathan Mallard <[log in to unmask]> >To: <[log in to unmask]> >Sent: Thursday, April 26, 2001 12:38 AM >Subject: Farewell > > > > After perusing this for the better part of a year, I must unsubscribe. >= > > To those > > of you who don't know me, I'm 29, have a mild case of CP and I work as a >= > > > > bridge engineer. = _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com