World Cerebral Palsy Day 2015: Why I like to see people with CP

Over the weekend, Sabrina and I stopped by a local bookstore. The woman at the register looked to have cerebral palsy, and I was psyched to see her there—it's not so common to come upon people with CP or other disabilities at stores in our area, excluding a CVS.

Today is World Cerebral Palsy Day. When you have a kid with CP, you become very aware of other people who have it, who are in college and the work world, and who lead independent lives. They give me hope for Max's future. I think it's also very good for Max to see people like him. The rate of unemployment for people with disabilities is 12.5 percent, per the latest figures from the U.S. Bureau of Labor Statistics. Thats more than double the general rate of unemployment in the U.S., which is 5.1 percent.

There are an estimated 764,000 children and adults with cerebral palsy in America, per United Cerebral Palsy, and 17 million people with CP worldwide. Check out this video from the people behind World Cerebral Palsy Day 2015, along with words of wisdom from parents on what having a child with cerebral palsy has taught them.

I shouldn't have asked that

Commuting home a couple of weeks ago, our train passed one that had derailed. One of my neighbors was sitting across from me, and we talked about it. I wondered out loud: Could a train derail while it was on an overpass and fall? When the ticket taker walked by, I asked. "Most times when trains derail it's on ground but yes, it could derail on an overpass," he said. I grimaced, and he grinned at me and said, "It's like my mother used to say: If you don't want to know, don't ask."

I definitely have that problem, especially when it comes to Max. From the second we knew something was wrong, I asked doctors and nurses a million questions including ones that didn't do Max or me any good. "He's arching his back, is that normal?" (No.) "He's thrusting his tongue, is that normal?" (No.) Have you ever seen a baby who had a bilateral stroke?" (No.) "Is it worse to have a stroke or be a preemie? (Can't answer that.) 

Over time, I learned to quit torturing myself like that, although it's not possible to control information people share. Like the neonatologist who informed me that the only moms he'd ever met who had babies with strokes, as Max did, were crack moms. Or the recent form I got, attached to a poster Max had drawn at camp that won an award. It stated that his level of function is "mid," which I assume means mid-range.

It was a shock to see. I never think of Max that way. 

The best piece of advice I ever got about raising a child with special needs was to look at how he's doing, not at his medical records or the X-rays of his brain with all the grayish-white blobs where the damage occurred. The film and paperwork are tucked away in a closet. What I see is a sunny kid making progress as best as he can, a kid who's defied the doomsaying doctors. Cerebral palsy is just one part of who Max is; it doesn't define him.

When we go to annual visits to the pediatrician, neurologist and physiatrist, I bring a long list of questions about Max's care and treatment. I am constantly emailing his teacher and therapists about stuff that will help him. But I don't ask about things that will only distress me.

Given this, I am really perplexed about why I did the following. While we were having lunch at home recently, Sabrina glanced at Max and said, "Why are his eyes so big?" She meant his pupils. Sure enough, his were dilated. And it wasn't just the lighting we were in because after that I noticed that his pupils were always in that state. It wasn't something I'd ever picked up on before.

I emailed the neurologist. Was it the seizure meds, I wondered? No, he wrote back: "It's his baseline neurological tone, as a consequence of the strokes."

My heart sank. I started thinking about the brain damage, and whether neurons had formed new connections and networks around the damaged areas. What would his brain look like if we took X-rays now? Dave and I have never wanted to, and the neurologist hasn't thought it necessary. If Max's brain didn't show improvement, we'd get upset. And if it did, well, that wouldn't tell us anything we didn't already know about his functioning—or give us clues into his future. But there I was, sadly pondering how Max would be different if the damage had happened in different parts of his brain, or if the stroke hadn't been so large.

The sad, dispiriting, freakout thoughts I try to avoid.

I was annoyed with myself for asking. I'd had a feeling what the answer would be, and I didn't need to know. The information tells me nothing about Max, his abilities and who he is. 

I haven't been thinking too much about it since, nor have I been staring into Max's eyes to check on them. Well, maybe just a little bit. Soon enough, I hope, I will bury that piece of information in my brain, like the medical records and X-rays lying in the depths of the closet. And once again, all I'll see is Max.

Image: Flickr/SarahSphar

Those little big-deal accomplishments

 

This weekend, Max discovered blinking. We were working on his weekly book report and I think he needed a break because all of a sudden, he started to blink rapidly at me with both eyes and crack up. I did, too. He scrunched up his nose each time he closed his eyes, and I could see the movement took concerted effort.

I often wonder how it feels to be in Max's body. He has spastic four quad cerebral palsy, which basically means all of his limbs have some stiffness, along with the muscles in his jaw. The term scared the crap out of me when I first heard it when Max was a baby. Still, we learned it was not a prognosis. Max was able to bicycle his legs, an alternate movement that's the basis of walking. The therapists and doctors said Max had a good chance of being able to walk and he did, independently, on his third birthday.

Max's hands and arms are more affected by the CP. Grasping objects remains challenging, though it's improved over the years. He can't easily raise his arms up and rarely supinates them (which means turning them so your palms are facing up).

I've read that people with CP can have painful cramps and I worry that Max gets them, although over the years he has gotten better at telling us when something hurts. I wonder if he feels it when his muscles are stiffer or whether it's his norm and he thinks nothing of it. A number of times I've asked, "Max, do your arms hurt?" when they seemed particularly stiff and he's said, "No!"
 
When Max realizes his body has the power to do something, it's a thrill for us all. I can still remember how psyched Dave and I were a few years ago when he figured out how to blow his nose into a tissue. We don't take any muscle movement for granted. The inchstones still feel like biggies. Although Max's ability to slide the Monsters University DVD into the player has become less of a cause for celebration because he can watch that movie again and again (and again) as we learned this snowy weekend.

Dave and I have sweet memories of Max mastering movements: Feeding himself, giving kisses, walking up the stairs, dancing, isolating his pointer finger to tap on the iPad. This is the year he started giving hugs. He can't wrap his arms around me so he holds them straight and smushes his head and body into mine. I love, love, love those hugs.

The blinking isn't going to get Max into college or anything, but the fact that he's feeling it—and aware of it—is amazing. Dave and I kept asking him to do it; we all got a kick out of it. Maybe one of these days Max will master the one-eyed blink and charm the lady therapists even more.

Dubiously sane things I have done concerning Max...perhaps you can relate?

I was e-mailing with a mom over the weekend; her baby had a stroke at birth, like Max. Until recently, she had measured her baby's head every three days because she worried about microcephaly, a condition in which a head is abnormally small (it indicates the brain isn't developing properly). She joked about getting committed to the psych ward, and I knew just how she felt because I've done that.

For the first year of Max's life, I was obsessed with his head size. It was small, very small. Still is. I'd regularly measure it and dread visits to the neurologist. When Max needed winter hats, I'd buy two sizes: one in the age-appropriate size, one in infant size. Inevitably, only the infant hat would fit, even when he was three. But I kept buying the age-appropriate size hat, as if I could will his poor, sweet little head to fit into it. At some point I finally quit freaking about Max's head size—as long as he made good progress, I decided, that was all that mattered. And he has, thankyouGod, he has.

Over the years, I have done some wacky stuff related to Max, driven by anxiety, fear, terror, love. For the first few weeks after Max was home from the NICU, I slept on our living room couch with him resting on my chest. Literally. I felt I needed to be that close to him to make sure he was still breathing. I can still vividly recall the day my boss at the time called to check in on me. At some point, I mentioned that Max was sleeping on my chest every night. Awkward pause. "Oh! Is that safe?" she asked, logically. I must have seemed so strange.

I have also reached into Max's crib as he slept to massage his hands in the hopes of loosening them from the tight grip of cerebral palsy, stared obsessively at other kids' hands in the mall to see just how open/functional they were in comparison, spoken to Max in different accents to see if he'd notice and, once in a fit of desperation, ate an entire jar of baby food (bananas) to show him how to chew right. Dave has been my partner in special needs lunacy; when Max was little, he used to gargle water to distract Max while we were feeding him so I could get in some food.

OK, here it is, your chance to share the out-there things you've done. That way, they can haul us off all at once to the loony bin!

Hahahahahahahahahahahahahahahahahahahahahaha!!!!!!!!!!!!!!!!

istock/Dennis Cox