Kudos' to your wife for caring Ken. Hospitals are really scary things for
many of our kids who have multiple disabilities. Even large children
teaching hospitals have to be watched all the time. Alex has had a very
rough time medically. The mobility part of his CP has been close to the last
issue we had to address with his medical problems. Everytime he has to see a
new specialist they have to bring his chart in on trolley cart and people
think it's for 6-7 very sick people because it as that many thick folders. I
was always amazed the ER staff had little knowledge or access to gtubes or
other mechanical assistance needed by many of our more involved kids. All of
his hospital stays he was never left alone, I usually, but always another
family member would be with him( including sleeping on that dinky couch
called a sleepover bed for parents) and caught the medical mistakes. You
learn to watch like a hawk and advocate gets added to your list of
credentials.
On a positive note it's people who care, like your wife, who have made
success stories out kids like Alex. He has always been considered
XSI(severely multiply impaired) by the school system. He has been part of
the Special education curriculum since he was 5 months old. This  year he
was placed in the EMI ( educable mentally impaired) kindergarten class. I
had a teacher conference this week. He has done pretty well in the class and
I was hoping next fall he could go to the regular kdg in the morning and the
EMI class in the afternoon. They felt it wasn't in his best interest because
( I'm still on cloud 9) they felt he would benefit better from being in the
REGULAR 1st GRADE with the  proper support. I spent over 2 hours with the
assitive tech person going over all of Alex's physical needs
 computers,dressing, eating etc) and he gets to try out a bunch of her toys
after Easter break. Sometimes there really is light at the end of the tunnel
and for our kids it starts with caring people like your wife.
Joanne

----- Original Message -----
From: Barber, Kenneth L. <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, April 10, 2001 1:38 PM
Subject: a shot that killed.


> my wife, judy, works with kids that are profoundly mentally retarded. many
> of these kids have cp, were shaken babies, etc. she told me last knight
that
> two of their kids had died over the spring break.