Tombo,

Sunny FLA has lots of services for the disabled and their families. I don't live there, so I can't tell you specifically, just what they do have.  Beth, who's an occupational therapist down there may be able to help you; she's a frequent contributor to this list.

You asked for insights from us CP adults.  Dunno what I can tell you as a parent as I don't have kids but I can tell you what my parents did right.

They didn't try to make life easy for me; they didn't let me get away with murder, nor did they allow me to slack off.  No pity trips, no guilt trips.  I was expected to do my chores, keep my room clean, my bed made, my grades up, etc., etc.  They didn't let me slack off physical therapy, either.  No amount of whining got me off the hook, although I'm sure there were many times they wanted to give in just to get me off their backs.

Can I ask you something?  Why was your son not diagnosed with CP until the age of 12?  That's rather late for that diagnosis, and usually the earlier the start of therapy, etc., the better.  That is not to say it won't help; better late than never, but it might be harder work to see improvement.

I was diagnosed myself at the age of 6 months and started therapy right away.  I am now 48 and am doing OK for someone who's supposed to be dead, LOL. (Since I was 3 months premature and weighed only 2 lbs at birth, my doctor didn't think I was going to make it.).

Kat

\"St. John\'s University Cerebral Palsy List\" <[log in to unmask]> wrote:
> no ken - not hawaii - sunny fla-fla (florida)----



> aloha guys!
>
> my son shane (12 yrs.) has been diagnosed with CP (ataxic).
> unfortunately we came to this news late in the game & beyond
> being told "he needs more PT/OT" - i've been left to wonder
> 'what's next?'
>
> i'm doing the pediatric neurologist search & coming up short
> - few  & far it seems.
>
> a year ago he had orthopedic surgery on both feet to help
> correct his gait - his walking is now worse. i hope this
> doesn't indicate a possible deterioration in ambulation.
>
> behavorial issues - quite bizarre - have been addressed,
> taking the focus away from his CP.
>
> the horizon has that gloomy glow & perhaps dad (moi)
> should be checking into a monastery in tibet. keeks!
> until that time i was hoping you guys who have been
> "down the pike" a bit might shed some light on what
> i may expect "up around the bend!"
>
> peace & all good!
>
> tombo