Before I had my son, I thought it was a terrible fate to have cerebral palsy. Although I didn’t actually know anyone with it, not being physically “perfect” seemed tragic.
Then I had my son, Max. He had a stroke at birth that caused brain damage. When the doctors at the NICU first brought up the term “cerebral palsy,” it terrified me. The disorder’s caused by damage or injury to parts of the brain that controls muscle movement (“cerebral” refers to the brain and “palsy” to muscle weakness). It is non-progressive. Sure enough, Max got CP. He has spastic four-quad cerebral palsy, which means that he has spasticity (tightness) in all four limbs; spastic CP is the most common kind.
Perhaps all this sounds awful to you, too. But now Max is nearing 10 years old, and I know that he is a wonder, not a tragedy. We were told Max may not ever walk; he walks. We were told he might never talk; he talks (not in the “typical” way, but he does his best). We were told he could have serious cognitive impairment; he has some, but he is very bright. He has issues using his hands, but he finds ways around that.
He is, in my eyes, is as perfect as any other child. He is most definitely not a tragedy, and I try my best to help others see that.
There is so much that’s misunderstood about cerebral palsy, unless you happen to know a kid with it. I asked moms of kids with CP what they wish other people understood about their kids; this is what they had to say.
Kids with CP have plenty of potential. “Many people look at Angela and see a child with limited abilities—on the outside, she doesn’t look like the typical kid living next door. She doesn’t walk or talk, she can’t see very well and at age four is still in diapers. What people often don’t realize is that Angela is a very smart child who thinks and feels just like any other four year old little girl. She may not be able to walk on her legs but she scoots on her back like none other. She may not be able to vocalize the silly thoughts in her head that are making her smile, but she will try her hardest to use her iPad to attempt to communicate. Angela has the same potential and abilities to impact this world as her non-affected peers. She is able to shine and succeed given the proper tools and with a creative, fun filled approach to life.”—Karen Owens, The Owens Family.
Realize that kids with CP can understand you. ”I would like the world to know that just because my child is physically disabled, that doesn’t mean that he can’t understand the things people are saying or what is going on around him. Don’t mistake a lack of physical ability for a lack of intelligence or awareness. I see people doing this all the time–they talk in front of Charlie like he won’t understand them.Imagine their surprise when he laughs at their jokes! He really is a listening to everything people say.”—Katy Monnot, Bird on the Street.