Greetings All,

          Hope everyone has a good week.

          Welcome Beth!! Happy to have you here. My daughter Amber has CP -
she is 13 and a Right Hemi. I do know that brain damage doesn't neeed to be
severe to create problems only minor damage to a vital area can do that.
Amber had a grade 1 brain bleed - which should have left minimal to no
damage , and her CAT scan shows a large piece if her brain missing -
conversely - a freind of hers Molly - is also a right Hemi and one can't see
the damage in her brain. I am afraid for some there is no real item at which
one can point a finger and say this is why. I know this is frustrating to
many a parent - as people WE WANT AN ANSWER AND SOMETHING CONCRETE AND
SOMETIMES THERE JUST ISN'T.

       Hi Bobby, wonderful about the movie!! Gives us all something to look
forward to!! I am sending in a resume to Northern Virginia Community College
to apply for a part-time or full-time teaching position in the computer
dept. Have any great ideas what I could put in my cover letter that would be
of interest and helpful?

       Hi Joyce, You where talking about Dan taking pictures of you - It
might help to remember -the people who love us and frequently stranger don't
see the things we make major productions about becasue 1. they love us  and
2. those are only big things to us. Everyone including the supermodels have
something they don't like about themselves, something the fixate on that
actually isn't much in the scheme of things. Amber right now is going thru
the my nose is to big stage. I am baffled - its a nose. However she is very
self-concious about it. I am about 35 pounds overweight, and I act like I
weigh 9000 pounds. And I never forget I am fat!! This baffles others who
think I look fine.

Hi Mike!!! Wow - I knew I spent a lot on the kid but this brings it home!!
Thanks!
"A recent study in California of the extra economic costs
associated with cerebral palsy and 17 other birth defects, such as
Down syndrome and spina bifida, showed that cerebral palsy had
the highest lifetime costs per new case ($503,000 in 1992
dollars). Half of these costs are borne by families, who often find
it difficult to obtain all the services they need to help their
children."

   I have been mulling this phrase around for a bit now and want to toss my
2 cents in - the phrase is "able-bodied conspiracy". To me this implies
everyone out there with an able body is actively working to keep diabled
folks down. I tend to believe that for the most part - disabled folks don't
even come into these people shpere of conciousness the same way rape victims
don't impinge on yours. To imply they have a abled bodied conspiracy makes
as much sense as to say the disabled community has a rape victim comspiracy.
It makes for an Us and Them scenario and bad feelings. Just becasue
something is important to you doesn't make it important to everyone else.
There are tons of people out there doing things and if they have an able
body - you could alienate them. People can only really relate to things they
have experienced or have some understanding off. Lets face it Christopher
Reeves only sinks money into spinal stuff now - becasue is there in his face
so to speak - not becasue it didn't existed before and/or he didn't know
about it. You have to place life into perspective - everyone emphasizes what
is important to them. Therein lies the importance of educating them, and
beinging the disability community to their attention, just as Betty and I
educated an Alexandria Police Officer ( Betty - do jump in with that story
now - I have been waiting - impatient foot tapping!!)so I believe we need to
view people as ignorant rather than anti.  I think most of us respond badly
of we are cornered or someone accuses us of something. Lets face I never
thought about the disabled community before I had Amber and I did private
duty nursing for the elderly and infirm - but even as I wheeled them about I
never thought about ramps or parking spots - frankly I never did when I
wheeled Amber around either. That's becasue in those days my body functioned
and altho curbs where a nusance - they where managable. Lets be more
generous and educate - yes there are some genunine A__holes out there - but
lets not confer that title on the geneeral population,yet anyway.

   Now, I need some help. Amber is to the age and stage where she could be
on a list - I am wondering if anyone knows of a list for teens with CP or a
generalized list for disabled teens? I would just start a list for her but
this places both of us in an awkard position. I want a safe place where she
can say what she wants without worrying about editing it becasue Mom will
read it. I know she would down play stuff and not say stuff in order to
protect me. This is whole reason all self help organizations have different
groups for the different people -example- AA, Al-Non, Al-teen,etc. It is
incredible important that people have private safe places geared to them
where they can ask questions and vent freely. I was in a Incest Survivors
group and I certainly would have applied the gag or edited out stuff - had
either Amber, my SO or parents been there. Yes, Amber and I are very close
and are best friends - but I honor the fact she is person in her own right
and deserves privacy and her own places. We ain't Siamese twins!! I hope one
of you has some ideas!!

     That's it for now - Everyone have a great weekend.

                     Brightest Blessings
                           Trisha