Tuesday, September 4th, 2012
Today is World Cerebral Palsy Day. 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
Teach your children that my child is just like them. “Parents, you hold great power to mold your children’s perspective and perceptions about my child who just happens to have a disability. If you treat my child as different, if you talk about my child with pity, or if you stare at her, your children will learn from you. They will learn that my child is not a kid or a friend, but rather that my child is different and they will look at her with pity, they will stare. Instead, teach them that my kid is a kid, just like them. She likes to giggle at silly jokes, she loves to play games and Barbies, and she even loves to run— she might just need a walker, or a wheelchair, to use as legs. Nonetheless, my kid is a kid all the same. My kid could be your child’s friend, help me bridge the gap!”—Ellen Stumbo, These Broken Vases: Finding Beauty in Unexpected Places
Talk to my child like any other kid. “Baby talk is so cute, but not when a child’s not a baby anymore! My son has cerebral palsy and developmental delays, but he is a five year old. He knows he’s a big brother, but when people high five his little brother and then talk baby talk to him I fear it hurts his feelings. He wants to be included , he wants to feel important , and he wants a high five or two!”—Kate Leong, Chasing Rainbows
Know this: It’s not that kids with CP can’t do things—they just do them in their own way. “People may think that cerebral palsy puts limits on what Darsie can and will do, but that simply isn’t that truth. Darsie can do anything that everyone else can do, but sometimes it does change how she does things. For example, Darsie ran a cross country race with her schoolmates. She wore a brace on her foot to help give her the support to do that. Darsie packs her own backpack every day before school, but she has a strap on her zipper to help her. Darsie rides a bike with the help of training wheels. Darsie puts her own shoes on, with the addition of bungee cord type shoelaces. Darsie dresses herself every day, but her belt has velcro instead of metal prongs. Darsie does whatever she wants to do! Sometimes we just have to think outside of the box to help her accomplish them.”—Shannon Wells, Cerebral Palsy Baby
Give my child some space. “Charlie’s cerebral palsy affects his balance and often, he is using his walker which affords him a large bubble of personal space. In groups and new environments he is timid and hangs back from the kids despite wanting to engage. I’d like for parents to encourage their kids to include him in the group by moving a bit slower near him and giving him the extra space he needs to feel safe.”—Sarah Myers, Sarah & Joe (& Charlie, Too!)