Parenting Kids With Cerebral Palsy

BlogHer Original Post

When people I meet comment on my son Leo's special needs and the difficulties families like mine must face, I usually have two reactions: One: I want them to know that cultivating a positive attitude helps tremendously, and Two: Every kid with special needs had a unique set of what Ellen Seidman terms "special powers." I'm used to Leo's quirks, I'm comfortable with them, they're just one part of the boy I love so much. But there's as much of an onus on me as there is on anyone else to get more familiar with other children with special needs and their stories. With that in mind, I asked three parents of children with cerebral palsy to tell us about their kids:

What type of cerebral palsy does your child have, and what are his challenges?

Love That MaxEllen: Max has four-quad spastic cerebral palsy, which means that all four of his limbs have some kind of muscle tightness.

Jennifer: Jack has cerebral palsy ataxia, one of the less common forms of CP. He didn't walk until he was two, and not independently until about three. Stairs came even later. We were happy to wait, because his doctors said he would probably never walk. He has low tone as well. His fine motor skills, while continuing to improve, leave him unable to coordinate most tasks that require a pincer grasp. His motor planning skills do not come naturally, so he needs each task broken down into all of the parts, repeated over and over, then put back together. I honestly had no idea life was made up of so many parts until I met my son.

Bridget: My son, Harold, has "Severe Spastic Pentaplegic" cerebral palsy with dystonia (variable tone.) Severe. Spastic. Pentaplegic. And a side order of dystonia. Meaning, most of the time, his legs, arms, and neck are tight. The dystonia is mostly at his core, his spine. Straight limbs, slumped over. He's in a wheelchair. He's in diapers.

Can't walk. Can't crawl. Can't sit up unassisted. Can't roll. Can't talk.

Can scream. Can laugh. Can communicate quite well using Assistive and Augmentative Technology. Can signal "Yes" with a head nod (most of the time) and "No" with a shake of his head (most of the time.)

Drools, slobbers, coughs, gags and in general, has a difficult time managing his saliva. Has been tube fed his whole life. Has seizures. Has Cortical Visual Impairment (CVI) -- basically, can see but is legally blind. Can hear very well. No scoliosis, "yet." No contractures, "yet." He's got Developmental Delay. Mostly, he is slowed physically by his CP so that he can not display his full potential. By that, I am referring to his brainiac geekiness. He's smart, but slow. He's got a quick wit and a great chuckle.

It is ghastly to list this all out, but it doesn't tell it all. There's no way to "get" Harold on the page. He's a meet-and-greet kind of guy. He's a great kid and he has a lot of challenges. Lots The greatest challenge is the ole "what you see is what you get" impression. Publicly and socially, at school especially, there are very few people who actually get to know him. People can't or don't have the time to catch on to his nuances. You have to be very patient. Harold has to be very patient, all of the time. He's a ten year old boy trapped in a body that functions approximately like a three month old. No shit. It's frustrating.

What did you know about cerebral palsy before it came into you life?

Ellen: Not that much. I didn't know anyone who had cerebral palsy. The words conjured up a person in a wheelchair, unable to function on his own. I never knew there is a wide-range of forms cerebral palsy can take, never knew I could have a little boy with cerebral palsy who would walk, although it would turn out to affect him in other areas, like speech and his ability to use his hands. It's all a crapshoot of where the brain damage strikes.

Jen: I thought cerebral palsy was a physical condition only that could possibly affect speech. I didn't know that people with CP often have seizures, and many have vision issues and decreased intellect. I also thought a trouble-free pregnancy and giving birth at a top-rated hospital would eliminate the chance of my child having CP.

Bridget: My earliest recollection of CP is from the show Facts of Life. One of the girls had a cousin who was a comedienne with CP. Kind of herky-jerky. Kind of slurred. I didn't know much about CP at all. Total newcomer. Totally de-virginized. Totally on-the-job training. Totally trial-by-fire. Totally out of my vernacular.

Do you have an elevator pitch that you use on nosy people?

Ellen: Mostly, I'll keep it simple and say, "He has special needs." Recently, I told someone he had "special powers" just because I get tired of the words "special needs." If I keep talking with the person, I might tell them that Max had a stroke at birth that lead to cerebral palsy, but I tend to not get into it with strangers because I can't stand the pity stares. They have no clue how all-around amazing Max is.

Jen: "Jack walks like a drunk, but he does walk, run, hop, skip and jump. It may not be pretty, but do not ever leave him unattended with an open gate/door or you will lose him; he's tricky that way. He has limited fine-motor skills, so almost everything you think he should be able to do by himself, like eating, dressing and toileting all need full assistance. He tires easily which is why we use his wheelchair, although it's also to keep him safe in crowds and anywhere I need to use my hands. If you think you heard him say something, you probably did. He's non-verbal, except when he slips out with a completely apropos phrase. In fact, it might even be in Spanish ... we sort of think he's non-verbal-bilingual.

Bridget: Mostly, nosy people are curious people. If a person has a question, then s/he is seeking knowledge. Harold and I take on the roll of Ambassadors. I think people who ignore Harold seem disinterested or scared and it's their loss.

What amazingnesses of your sons do people need to know about?

Ellen: The most important thing I want people to know is that Max is not first and foremost A Kid With Special Needs. He is first and foremost A Kid. I want people to look past his disabilities and quit feeling sorry and see Max. Just like any other kid, he loves to play, kid around, eat ice-cream and even be totally obnoxious sometimes. And, yes, there is much awesome-ness there. He has a great sense of humor, he's bright, he's playful, he's so social he's like the mayor of his school, he's curious about the world, he's got determination up the wazoo. Sometimes people look at him and say, "He's so happy," which can be annoying. It's kind of like when someone says a heavyset woman has "a great personality." Max does have a killer smile, but there is so much more to him.

Jen: Jack has an awesome sense of humor, which is sort of crazy of me to say because he's basically non-verbal. Somehow we all know that he gets the joke. He has this awesome smirk when presented irony, or when his little sister is being a pain in the ass. His sense of what is amusing reminds me that he is truly my child, my husband's boy. I love it when the three of us laugh at the same time about something.

Bridget: The dude is awesome. He is an ice-breaker. Conversationally and Grinch-heartedly. He enjoys and delights in discovery. If you have the time, you can gain an amazingly cool new friend.

If you were to write a children's book about your son, what would be the title and why?

Ellen: Max Kicks Butt. Because he does.

Jen: This is a tough one ... maybe Jack Likes Ice Cream Too! I think it is very easy to see where Jack is different, from other children, from other boys his age, from the rest of the world, but there are so many things that are the same. He loves to snuggle with his mom and dad, and he loves to play tickle fight. He likes to go to Disneyland when all the lights are up for Christmas, and he loves to play in the woods. And just like most other kids on the planet, Jack loves to eat ice cream. Whenever I am in charge of a crowd of kids with varying abilities, I start with food to level the playing field. If a "typical" kid has an ice cream cone in his hand, they hardly notice  that I am feeding Jack his ice cream ... normally they are just impressed with Jacks ability to polish off a three-scoop sundae with marshmallow topping that fast!

Bridget: How Harold Does It. It is abundantly obvious what Harold cannot do, but what you may not know is this: Harold can pretty much do everything you can do. Harold does things differently, but he still gets the job done. Harold does not walk with his own two legs, but he can drive a power wheelchair. Harold cannot talk with his mouth, but he can use a communication device. Harold does not eat with his mouth, but he does get food through a tube. How do you say "yes" without your mouth? Nod. Harold can, too. How do you say "no" without your mouth? Shake side-to-side. Same with Harold. Harold cannot write, but he can use switch access with a computer to compose letters, do his homework, write a story, email Grandma, etc. How Harold gets other things done is usually with help, but he's the one in charge. He's great at bowling with a ramp. He's a fantastic finger painter. He's got adapted toys and tools to help him get, and stay, involved.

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More stories from bloggers whose children have cerebral palsy:

Shannon Des Roches Rosa is a writer and editor at The Thinking Person's Guide to Autism, BlogHer.com, Squidalicious.com, and the Can I Sit With You? project.

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