Current Events > Anyone know anything about cerebral palsy testing?

(+) Yeah! (+)

Cousin's baby is getting tested. We're distant, but like, I want to help in some small way, if at all. Even comforting information

(i'm probably just gonna ramble. Sorry if whatever I say is pointless or unhelpful)

• It's important to know the severity of the disability. Some people can't walk at all, some people are mostly entirely paralyzed on the left side, while other people just have more general motor skills. I can walk with issues and my left arm and hand are pretty useless outside of hugging an object between the arm and chest. It took me until 3rd grade to get consistent and putting on clothes. There are things I still can't do, like putting on gloves. My skin is pretty sensitive to heat, I can't really bend, and my face can't crack a full smile
• I don't really remember much about testing since that was so long ago. I remember going to physical therapy a lot at Shriners (https://www.shrinerschildrens.org/en/locations/chicago). Thankfully they paid for everything, including the hotel visits for extended stays. My family was always there for moral support while learning to do things like walking and talking.
• It's important to know what the kid can and cannot do for themselves. Let them try things by themselves, and tell them that there is no shame in asking for help. My parents gave me so much unrealistic praise that I got severe internalized ableism and I get frustrated whenever I mess up. It's hard to ask for help for doing otherwise simple tasks, and the kid has to confident enough to try things on their own and not ashamed to ask for help.
• The kid will probably get a sort of cast that keeps their bones straight. I was frustrated with casts as a kid ("why use a cast that doesn't reverse cerebral palsy" + bullying) and my spine is deformed because I made the decision to not wear a cast. I regret it.
• Find them a hobby they enjoy. Video games are pretty accessible nowadays with accessibility features and controller. I love video games because I can beat able-bodied people in them when I can't play physical sports. I love video games so much I dreamed of being a streamer (I gave up though, rip). There are places out there with disability sports leagues and lots of fun things for kids of all abilities.

I don't really know if I can help you. I'm an adult approaching 30 and I don't really know what I can really give. I just think it's important to make them feel accepted while treating their disability realistically. I think the unrealistic expectations of my parents did a lot of mental damage they did not really expect.

anttttt posted...

(i'm probably just gonna ramble. Sorry if whatever I say is pointless or unhelpful)

* It's important to know the severity of the disability. Some people can't walk at all, some people are mostly entirely paralyzed on the left side, while other people just have more general motor skills. I can walk with issues and my left arm and hand are pretty useless outside of hugging an object between the arm and chest. It took me until 3rd grade to get consistent and putting on clothes. There are things I still can't do, like putting on gloves. My skin is pretty sensitive to heat, I can't really bend, and my face can't crack a full smile
* I don't really remember much about testing since that was so long ago. I remember going to physical therapy a lot at Shriners (https://www.shrinerschildrens.org/en/locations/chicago). Thankfully they paid for everything, including the hotel visits for extended stays. My family was always there for moral support while learning to do things like walking and talking.
* It's important to know what the kid can and cannot do for themselves. Let them try things by themselves, and tell them that there is no shame in asking for help. My parents gave me so much unrealistic praise that I got severe internalized ableism and I get frustrated whenever I mess up. It's hard to ask for help for doing otherwise simple tasks, and the kid has to confident enough to try things on their own and not ashamed to ask for help.
* The kid will probably get a sort of cast that keeps their bones straight. I was frustrated with casts as a kid ("why use a cast that doesn't reverse cerebral palsy" + bullying) and my spine is deformed because I made the decision to not wear a cast. I regret it.
* Find them a hobby they enjoy. Video games are pretty accessible nowadays with accessibility features and controller. I love video games because I can beat able-bodied people in them when I can't play physical sports. I love video games so much I dreamed of being a streamer (I gave up though, rip). There are places out there with disability sports leagues and lots of fun things for kids of all abilities.

I don't really know if I can help you. I'm an adult approaching 30 and I don't really know what I can really give. I just think it's important to make them feel accepted while treating their disability realistically. I think the unrealistic expectations of my parents did a lot of mental damage they did not really expect.

I think just being an adult that can provide advice on this is a boon for hope, in addition to the practical advice. I really I appreciate it, I think they will too.