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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:
- Ellen Seidman writes the blog Love That Max, which was recently picked as a Babble top 50 Mom Blogs of 2010.
- Jennifer Byde Myers blogs as Jennyalice at Into the Woods, Living Deliberately, and is a 2010 Parenting magazine Must-Read Mom.
- If Bridget Henry was a blogger, she would have won both of those awards plus a Betty Crocker Seal of Approval.
What type of cerebral palsy does your child have, and what are his challenges? 
Ellen: 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
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