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. =