I totally forgot I joined this site 6... - Living Positively...

Living Positively with Cerebral Palsy

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I totally forgot I joined this site 6 years ago! I’m back 😊 🇨🇦

Thrifymom profile image
Thrifymom

My sister is 38, my daughter (adopted) is 12, a boy in my daycare is 7. They all have Cerebral Palsy. My sister works full time with level 2 and enjoys bowling (she kicks my butt and has more of a social life than I do). My daughter is has level 4 spastic Quadriplegia and has piles of friends at French Immersion school, enjoys wheelchair basketball, plays percussion in band, adapted baseball and had a small roll in a musical. In my city (260,000) there is Wheelchair Basketball, tennis, rugby, sledge hockey, floor hockey, swimming therapy, etc. Some things are geared for ages 4-16 and some are 14-21 and others are 20+ we also have a few non-profit respite options as well. I am very thankful for the HUGE family of support in a community of people all over our country (as a few friends have moved away to train on the National Paralympic Teams) that we discuss clothing/wheelchair Halloween costumes, therapies, treatments, surgeons, etc. I firmly believe that each person shouldn’t have to struggle building their own road when they just need directions to a perfectly paved one!

5 Replies

Hi, am new to this web site . I joined as my sister has CP and this is one of the rare sites I have found that even references adult CP. My sister is now 50, diagnosed at 21.

We are working through the PIP system, currently waiting for a date for the tribunal. In your post you talk about level 2 and 4. Is this an official assessment of CP? If so how would we get this assessment?

Whilst people have heard of CP it can be difficult to explain the extent of its impact on day to day living.

Many thanks

FnO2 profile image
FnO2 in reply to sukismum

Trying to reply to both comments.... idk what either PIP or levels systems are. I'm 57 and just classified mild diplegia...meaning more prominent in legs. As I grew up there were few others with CP and I never got any accommodation unless in physical education class which grades noted were always below average. Except noting participation.

FnO2 profile image
FnO2 in reply to FnO2

Wow If I didn't know it I would have thought I wrote this response word for word. Age, level etc. A little weirded out but in a positive way...too crazy 🙃!

FnO2 profile image
FnO2 in reply to FnO2

Hey it was me...idk I had been assigned Fn02 handle

Thrifymom profile image
Thrifymom in reply to sukismum

Sorry for my lack of reply. Occupational and Physical therapist’s placed my daughter as level 4/5. Level one is mild, 2 can walk with difficulty, 3 can walk with aids like a walker, 4 requires wheelchair and 5 oftentimes requires feeding tubes,etc. Hope this helps?

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