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