i have a son of 11 who cp, i have no one to talk to - Cerebral Palsy Message Board

peesandgravy · 05-13-2009, 01:37 PM

My son has just turned 11 and has got cp in both legs and all the right hand side. I dont have any one to talk to as no one i know as has a disabled child like mine i feel so alone sometimes and that i have to struggle on my own. If any one could help me i would be gratfull

Leaciesmum · 05-13-2009, 08:13 PM

Hi there, I feel for you. I have a daughter that's almost 3 with quadraplegic cp, but apparently she doesn't 'present' as a typical case of cp. She's been classed as level 4, in short means chances are she'll never walk or stand independently. But mentally she is extremely bright, she has no speech problems, or drooling and swallowing problems.

Do you have support systems in Eng? (I'm in Australia), here we have Early Intervention, and I'm with a group called Scope, they are my lifeline, not only do they supply the physio and OT, but the socialisation with other parents of kids with cp. Once every 3mths we have a cuppa and a chat while the therapists entertain the kids so we can talk about how we deal with things, what works, what doesn't etc etc. We also have hydrotherapy once a fortnight with Scope, that gives us another opportunity to 'mingle'.

peesandgravy · 05-14-2009, 04:46 AM

all i get is his physio every week but i dont meet other parents who have the same as david is all on a 1 - 1 my son is dependant on crutches and the wheelchair. He also has learning diffulculties he also has to a speach inpediment and wears splints 24hrs a day. We also have scope but i dont know how to get in contact with them.

vermontcp · 06-03-2009, 04:04 PM

I'm sorry you are feeling so isolated and alone. I know the feeling, in that we've never really found another kid with CP my son's age (now 17) around here. We've had a wonderful physical therapist and that helped a lot. Our son is pretty mainstreamed in school and his friends are able bodied. He walks on crutches. He's done well, but I sometimes think it would have been nice for him to know someone like him. We're in the States, but spent a year in England when he was smaller. I found Scope to be very useful. They have a website, so that might be a good place for you to get in touch. You are not alone. Many families have faced the same issues. Best of luck!