Dear Bobby and Kyle,
As CP is such a wastebasket term and can range from very mild to severe your
statements are pretty sweeping. I can only speak of CP and Alex but his 5
1/2 years of life have been a very roughly traveled road. My identity is not
wrapped up in Alex's disabilities and I'm trying very hard to make sure his
identity isn't either but they can't be denied either. CP was one of Alex's
last labels given and in a way the most irrelevant although it did get him
services he wasn't getting before hand. He was born weighing 1# 14 oz and
suffered a cardiac arrest 3 weeks in to his life that required 30 minutes of
CPR to get a heart beat again. It's a whole another thread for discussion
 or maybe not) whether we did the right thing when we asked for heroic
measures to be taken. His medical charts are high enough  that when stacked
on end come up to his arm pits when he stands straight. His first three
years were a struggle for survival.I doubt the chart height will get any
shorter either. Mobility was the least important thing at the time. It still
is. Medical jargon become a second language. It was necessary to learn it in
order not to be patted on the head by the Doctor of the moment.  Many many
times various email groups have been my life line not to cure a condition
but to manage it. I don't take Alex's survival for granted knowing it could
all come to an end easily. The C-Palsy group is different because while
there may be a request about various pieces of equipment, that equipment can
be a digital camera as well a KAFO's. I'll list all of Alex's labels in the
sig line this one time but like I've said it won't tell you who Alex is.
Joanne
Mom to 7 including the youngest Alexander Omega, who has Spastic Quad CP,
GERD,RAD, Sleep Apnea, laryngotrachobronchiomalacia,ROP resolved with laser
surgery, Severe GERD, Nissan fundoplication, Gtube user from 18 mo till
4yo,seizure disorder, delayed gastric emptying,  CVI, high myopia,estropia,
EMI, but definitely not the village idiot.



> Something that troubles me deeply is when a parent obtains their own
> identity through their child(ren)'s medical problems...
 I guess because these are inundated with large
> amounts of medical data on a daily basis, their vocabulary tends to
revolve
> around the ubiquitous acronyms of medicalese.  Methinks it's a casualty of
> our "information age."
>
> To those parents who might be offended by this--speaking as one who has
> passed through the fire of growing up with a disability--your children
will
> have a hard enough time "fitting in" without the albatross of one acronym
or
> another slung 'round their necks.
>
> Respectfully,
> Kyle
>
> -----Original Message-----

> Subject: Re: acronyms
>
>
> I had a less benevolent thought when I saw them. I thought, does anyone
out
> there have children rather than acronyms with names attached
>
> Bobby
>