Hi Kim,

I agree with the suggestions about Protection and Advocacy Services and
standing up for what you want in Stefan's IEP. I wish you well in that
process!

When I was young, both my therapists and my mom focused on helping me make
the most of my abilities, so we worked a lot on ADLs. It seems like Stefan's
therapists should certainly be working with him on ADLs. As I grew into
adolescence, and especially in high school, we focused on how I could live
well with my physical abilities. What adaptive equipment did I need? How
much attendant help would I need? How could I be independent between
attendants? Etc.. This shift in focus really helped prepare me for living
independently.

During adolescence I also learned how to direct other people in my care and
how to interact with them while they were helping me. I spent 2 weeks each
summer at an easter seals camp (what fun!) and  began to have a little
attendant help at home - a neighbor friend would meet me after school and
give me a snack.These were good places for me to learn how to receive
assistance from people outside my family.

I don't know how much this helps your immediate situation, but I hope having
an overall picture helps a bit.

Pam

> Dear Pam,
>
> I was very interested in your response to Kathy Jo's request, and I hope
you
> don't mind me asking, but I would really like to know who helped you with
> learning how to do the things that you are able to do.  Did a therapist
teach
> you, or your parents?  I know this sounds like an odd question, but I have
a
> 4 year old, and he has severe spastic quad CP/dystonia, and I would like
to
> help him be as functional as possible.  He cannot currently feed himself,
> transfer himself, etc.  The school therapists don't seem that interested
in
> teaching him self-help skills, and I was wondering if I should try and
locate
> an outside therapist who can start working with him on that.  He is very
> motivated, just limited physically.  We are currently working on finding
ways
> for him to communicate with assistive technology also.  Thanks for your
help.
>
> Kimberlee, mom to Stefan (4) and Alex (9)
>