Hello,
Occasionally I have posted here.  I hope that some of you could give me some
ideas based on your experiences.

Our son, Dana, soon to be 18 next week, will be graduating from high school
in June.  He has athetoid and spastic CP and a bilateral hearing loss.  His
CP is severe and quadriplegic.  He is quite smart, and a charming kid with a
great sense of humor....and the light of my life.

The problem (CHALLENGE!) we have been struggling with since he was tiny is
communication access....All those naysayers in the beginning years who said
he'd never talk challenged us to work with Dana even more, and of course he
learned to talk and doesn't stop.  He has a difficult time sometimes,
depending on the spasticity and how rigid and tight he gets...but mostly
people get used to his speech and can understand him.

Services from the regional program that serves kids with CP and other
conditions have always frustrated me, rather I should say Lack of Service.
While the services we receive from the specialists in hearing loss and his
physical and speech therapists have been more than suficient and they've been
extremely caring (Dana's been fortunate to have some of the same therapists
throughout his school years), we cannot say the same about the occupational
therapist.  It's amazing that she doesn't have a clue as to how to help us,
that we have to continue to find ideas and prod her on.   And then yesterday,
after asking that a 'final push' be given between now and graduation so we
can get on the path to find a way for Dana to access the computer, her
supervisor became defensive and said that this woman has spent more time on
my child than on other kids, and that she has been on the verge of tears
because she feels so unappreciated by us....PLEEEEAAAAAASSSSEEEEEE!!!

I have always advocated for my kids, especially for Dana, and he has learned
to advocate for himself.  But to think that we are still dealing with this
stuff 12 plus years later just ticks me off.  For a while I just let go cus I
had to pick my battles.  I am ready to wage war again, though I hate to say
it that way....I just cannot take the attitude...they basically said
yesterday that they "tried everything available and haven't been successful
and what do you want to do with just five or six weeks left?"  to which I
replied, "I want you to not give up and keep searching...after all, you folks
are supposed to be the experts in this...."  It was just another one of those
days where I wanted to renew my subscription to the "Mothers from Hell"
organization and put the button on (that's a group started by moms to kids
with disabilities who had to deal with the same BS).

Anyway, so, my question to you out in cyberspace is this:
For those of you who have no functional use of your hands and legs, and if
your head moves a lot, so that you don't have much control over your body,
what systems do you find work for you in accessing the computer, the phone,
your electric wheelchair, etc?  We invested in the Dragon Dictate years ago
and it never was able to recognize Dana's voice among other things....

Please, if some of you have time, either email me on list or privately and
let me know what works for you and what hasn't.

Thanks to all of you for any assistance you can offer.

Judi Kloper
Oregon
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