What do you tell people when they ask...
"So... What is cerebral palsy exactly, anyway?"
I don't mean the medical definition. That's useful when professionals in the medical profession talk to each other, but isn't as helpful in everyday life.
That's when you want a clear answer, in everyday English, that is easy for you to say and easy to understand.
We struggled with this one for a while too. After a lot of trial and error, these are some of the answers we have.
"Cerebral palsy is the name of a condition he has that means he has a problem moving certain muscles."
If the conversation warrants more of an explanation, we may add something like:
"His muscles don't respond well to the commands from his brain.
His brain works fine for everything else, but for some reason, the message to move some of his muscles gets scrambled sometimes."
Sometimes, you may feel the need to emphasize that cerebral palsy is not a sickness, a disease or anything even remotely like that. So you may want to say something like:
"Cerebral palsy is just a description of a condition. It's not a sickness or disease or anything that you can catch. It's not something that he'll grow out of, or that can somehow be 'cured'.
It won't get worse, but therapy can make it better. It may take a while, but things can improve. In the meantime, we just need to help him with certain activities."
You may notice that when someone asks us "what is cerebral palsy" that we focus on the poor function of muscles, NOT anything to do with a problem with his brain.
You may be thinking, well, it's both. But, here's what we discovered. If the answer to the question "what is cerebral palsy" even mentions a problem with the brain, or if it is the first item mentioned, than there is a tendency to assume that his intelligence is somehow comprimised as well. Wrong. Having cerebral palsy is NOT a learning disability, and is not a reflection of his ability to think or his desire to interact with the world. It's just his ability to control muscles that are affected by cerebral palsy.
Of course, it may be possible that a person can have cerebral palsy as well as other conditions. And, it is possible that another condition may create a learning disability. But it isn't caused by cerebral palsy itself.
If you're dealing with a school, a new caregiver, or anyone who will be responsible for his care, one of the most important things to emphasize is that his difficulty in movement has nothing to do with his ability to understand the world, or his desire or ability to communicate. So you may want to say something like:
"He may have difficulty speaking, but that doesn't mean that he doesn't have anything to say. You'll just need to pay close attention, and use the tools we have to help him communicate with you."
Of course, it does help if you do have tools! We've found that the Go Talk 20 worked best for us. It is easily portable, easy for him to use, and best of all, is easy to understand by people who don't have much exposure to cerebral palsy.
If you haven't used this tool yet, we highly recommend it.
In fact, maybe you could ask them, "what is cerebral palsy like?"
You may be surprised by how much they have to tell you!
Being able to clearly communicate a definition for a cerebral palsy lawsuit is important. Here is one view from a cerebral palsy attorney...
Do you have your own favourite explanations for the question "what is cerebral palsy?" What works for you, and what doesn't?
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