Any help on explaining CP to my son ? — Scope | Disability forum
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Any help on explaining CP to my son ?

lizz
lizz Member Posts: 2
Hi  this is my first post and i hope someone might be able to give me some advise , my son is now 10yrs he was born prem at 24wks he has mild Diplegic Cerebal Palsy on his left side {is able to cope with level surfaces and climbing stairs with hand rail going down can be a challange along with moving in groups or uneven flooring } he has vocal cord paralysis is means he is very quite too.  He is in a special needs school and tries really hard to keep up with the school day but he get very tired and gets upset he cant run and play football like the other boys. I think school dont quite understand how exhausted he gets but i dont know if this is due to CP or beacuse he is just growing so very tall { we have had blood tests and awaiting results} .If any one has any advise  it would be very much appreciated

Comments

  • NikiM
    NikiM Member Posts: 36 Connected
    Hi Lizz and welcome to the community! My daughter is 10 and has cp but is a wheelchair user. She also gets very tired. This is as a result of the type of cp she has - dystonic quadriplegia which means she is constantly moving from low to high tone. This also means she is always hungry and needs to consume about 30% more calories a day than her peers! In terms of speaking to your son about his condition, we explained to Maria that she was ill as a baby and that affected parts of her brain that control movement and speech and that's why she can't walk or speak. However she is able to get about in her wheelchair and uses a communication aid as her voice. She knows that she has cp and knows others with the same condition. We also made sure the school and others around her said the same so not to confuse or upset her. It's important you maintain consistency in how everyone speaks about her disability I think.

    Are there activities the school can introduce that would better include your son and his friends? Boccie for eg? And they should be looking at ways to facilitate his friendships so that he doesn't feel excluded. Maria is in a mainstream school so vast difference between what she is physically able to do and her peers but she practises her wheelchair driving or uses her walker when they are doing PE in the playground so they are all together or she referees some games. Talk to the school, maybe they don't realise he is unhappy? Hope it gets better.

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