Tuesday, September 30, 2014

What I want you to know about CP

Today, Oct. 1, is World Cerebral Palsy Day. This year I decided to write about some things about cerebral palsy that I wish more people knew, understood or thought about. It's been quite an education for us and I try to pass along what I know to others so they can be more understanding.

Cerebral Palsy is like snowflakes - no two are the same.
I still have to remind myself of this one from time to time. It's so easy to get caught up comparing Brett to others with the same diagnosis.  Some cases are very mild and barely noticeable - a hitch in their walk or a slight curling of a hand. It can impact just one side of the body, just the upper half, just the lower portion or all of the body. It also has varying degrees of severity. Brett's effects all four limbs. He also has spasticity - meaning his muscles spasm involuntarily. So his type of CP is considered spastic quad and his is severe. (see infographic below)

How is it treated?
There is no cure for CP ... yet. CP is essentially a brain injury. What can be done at this point is controlling the symptoms through medications, therapies and surgeries. Through repetition of tasks -improving muscle memory and motor planning - Brett has progressed in a lot of areas. Medications help relieve some of the spasticity taking away some of the pain and controlling movement.

How do I interact with someone with CP?
Just like you would anyone else. Don't be afraid and above all - assume intelligence. Though CP is a brain injury, for many it only impacts the way their body moves and operates. Their thoughts and intelligence are fully intact. Yes, there can be people with CP who also have intellectual disabilities or delays. But assume they know as much (if not more) than others their age until you learn otherwise.

If you don't know - ask
Kids are great about this. They will blurt out all kinds of questions because they are curious. I wish we as adults were more like that. I never mind a respectful question. Even if it's clumsy I still appreciate it if asked from a place of kindness. What's your diagnosis? Are you able to ...? Can I help you with...? What is that like? If you have a question ask it here in the comments. I'll do my best to answer.

They don't need pity
I get it. Your heart aches to see another person struggle or in pain. But there is a difference between compassion and sympathy. Brett's life is hard, but it's not sad. It can be frustrating for him, but so can life for anyone. People have asked me if it makes me sad. It doesn't. Yes, sometimes I grieve. I grieve when Brett is surrounded by kids and they are running and he is left behind. I grieve when his disability doesn't allow him to do something he would love - like go on a roller coaster - and I can't work out a way to even the playing field for him. But on a regular basis there is no sorrow. Brett is such a funny, happy boy. He is good at so many things and is surrounded by people who fiercely love and advocate for him. Don't assume someone's life is not good because they have CP or another disability.

Ask first before helping
This is my biggest struggle as a parent. I help all of my boys too much. Tying shoes when they can themselves. Opening snacks when they are perfectly capable. There is a lot Brett needs help with but don't assume he wants you to do it for him. I see it most when he is struggling to use his communication device. I want to jump in and help and make his life easier. But if I ask or his therapist says "can I help?" Nine times out of 10 his answer is 'no.' If he could say it I swear he would shout "I can do it myself!" even when he can't he would rather try and continue to fail than have someone else do it. There is a difference between helping someone and doing it for them. Ask first and respect their answer.

Here is an info graphic from last year I found helpful:

Brett's Motor type is mixed, quadriplegia, GMFCS level V progressing toward level IV.

No comments:

Post a Comment