Tuesday, March 20, 2018

Cerebral Palsy Awareness Month and the stuff I'm still not aware of

The parent-teacher conference was, overall, very good. Max's therapists were in attendance, and there was consensus that overall Max is a cheerful, enthusiastic, determined student. "Every child should have a Max in their class!" one teacher noted, and I practically saw bluebirds fluttering around the table like we were in a Disney movie.

During the physical therapist's turn, she spoke about getting Max to use his right arm, the one that's weaker and that he typically neglects, to climb stairs. Then she mentioned that she would also be working on helping him better maneuver narrow spaces. 

"What do you mean?" I asked.

She meant standing on line. She noted that it's a challenge for Max, both in terms of not knocking into other people and side-stepping to get out of others' way—a movement that does not come easily to him. 

Ohhhhhhhh. Standing in line. Another one of those things that had never occurred to me as being an issue for Max, mainly because Dave and I are always there to help him navigate lines. But of course, it's one of those life skills he's going to need as he gets older and more independent. 

March is Cerebral Palsy Awareness Month. Over the years, I've shared what I've learned about CP, including the things I didn't know before I had a child with cerebral palsy and what cerebral palsy is (and isn't). But as the parent of a boy with CP, I am still learning all the time about Max's condition, and how it affects his body. Sometimes, it takes people with CP to remind me, as happened with Max's recent wish to move to Jamaica (now changed to Florida). An adult with CP noted that warm temperatures can feel better to a person with CP, since the cold can make muscles tighten up and warmth can relax them. 

There are so many intricacies to having CP. Max's affects both sides of his body, and there are hundreds and hundreds of muscles involved; having CP means your brain can't clearly shoot your muscles signals what to do (and yes, it all starts with your brain). When Max was a baby, I was shocked to learn that the CP even affected his ability to swallow. It was why a good portion of his bottle dribbled out of his mouth at every feeding, and I had to give it to him with several cloth bibs tucked beneath his little neck. What mother doesn't want her baby to eat heartily? Thankfully, Max  had a good appetite and he chubbed up just fine.

Cerebral Palsy Awareness Month was created to raise awareness about the condition. For parents of children with CP, it's cerebral palsy awareness month every single month, day and year. As I continue to develop as Max's mom, I'm still learning—but I'm not longer freaked out. I'm reassured that Team Max is there to help support and enable Max, and help me and Dave support and enable him, too. 

These challenges that we find out about are not the "defects" I once thought they were; they are organic parts of who Max is and how he moves. There are work-arounds and ways to make sure he is as stable as he can be. At the conference, the PT mentioned that she regularly moves furniture and objects in the room before each session so that when Max walks in, he needs to really focus on navigating the space. I can't say that I will be continuously rearranging our home, but we can encourage Max to handle lines on his own when we go out for burgers (and let him pay for his food himself, too).

I hope we get to the point where Max himself is able to express his feelings about how CP affects him and makes him feel. That would be some amazing cerebral palsy awareness.


  1. Max is such a bright kid, and your blog has brought so much awareness to me and what other kids with different diagnoses struggle with, which I'm grateful for!


  2. I have a couple thoughts to add about stair-climbing:

    Stair-climbing using Max's "weaker" hand to climb stairs. People with CP and our "weaker" sides also have CP thrown into the mix with the weakness. This includes muscle tension that we are not in control of when it hits or when it will let go. So, it's not that we ignore that side when doing a complicated motor task like climbing or descending stairs. It's us consciously making the choice that keeps us the most safe.

    I am able (with the right railing) to use my CP affected hand to climb stairs (going up.) But if the railing is too thick? Too shaky? Then you can bet I am going to drop to all fours and crawl up the stairs, in the interest of my safety.

    Once, in a rush to get downstairs with coworkers as we were headed back to work, I didn't fully dry my hands after washing them. In my rush, I got caught up in my own forward momentum and grasped the railing (going down) with my slightly wet, and more spastic hand. This was a thick, unfamiliar rail, and there was no way I had a good grip. So I stopped. I was stuck. I stood there silent, using all my focus and physical energy to stay upright and keep what little grip on that rail I had. Coworkers noticed, and eventually one asked if I needed help. I nodded and they piggybacked me down safely. Nowadays, I sit down to scoot, rather than ever grab an unfamiliar rail to go down that's on my CP-affected side.

    I was in my mid-20s when that happened. I'd spent most of my life around stair railings that worked for me. That I didn't have to think twice about.

    I'm not a therapist, but I wonder if teaching Max to assess situations re: stairs isn't a more plausible solution here? For us, one stair rail does not fit all, and if he is taught to indiscriminately grab a rail with his more affected hand the same as he would with his less affected hand? He'll be less safe and less able to securely navigate.

    1. Agree 100% I have CP also.

    2. Tonia, this is invaluable perspective, thank you so much. You're right, it's most important of all for him to feel confident about making the right choice for him. Max's IEP is coming up and I'll be discussing this then. In general, he is aware of when he needs a hand. This weekend, he, Dave and Ben were walking around the neighborhood and they got to some uneven pavement and Max said he needed help. Ben ran over and grabbed his hand!

  3. There are a lot of things at play regarding standing in/on line.

    Standing Still Is More Taxing For Us Than Moving -

    There's a certain momentum in walking that allows for minute balance checks. Usually walking does not engage spasticity as much as running (or attempting to run) might. But when we STOP? We've got to deal with working ACTIVELY to keep our balance. Plus, spasticity has kicked in as well to "help" us stay still. (Think of spasticity as a substitute of sorts for strength - we may not have the strength or the balance to stay still, but we have spasticity which can compensate for strength by locking muscles into position.)

    This is well and good if we are planning to stand in the same exact position until our legs give out. But we are also trying to balance at the same time. And the little balance checks we may be able to get away with while walking? Well, they turn into awkward stagger-steps as we try to get our locked-up legs to move. Same scenario if a line is moving slowly. Walk. Stop. (Balance/Lock Up) Balance Check. Stop. Balance Check. Walk.

    And yeah, bumping into people is a hazard of walking with CP. You've got the above scenario plus the spatial difficulties of CP. So, sometimes it's hard to gauge distance or depth-perception or even orient yourself in your surroundings.

    I would challenge that no amount of PT will override spasticity or spatial issues. I do see the benefit of practicing navigating spaces purely for muscle memory and confidence.

    But in situations where there's a line? Consider a mobility aid. Consider a stand-in person while M sits. Out and about shopping? Consider a shopping cart. None of these things an option? Offer him a hand. The bottom line is safety.

    Just the opinion of an adult with CP. :)

    1. I have MS. Balance issues are fun, and I too have a weaker side. Safety is always priority. YES to standing still... coordinating muscles to move is difficult, but coordinating them all to not move and stand still and remain balanced is actually harder

    2. Ah, yet another eye-opening insight. Thank you, TaraJean. When we're shopping, Max usually does hold onto the shopping cart—or, rather, steers it because he enjoys doing that. It occurs to me that all those years of him zooming shopping carts around stores came partly because he likes things with wheels—and partly because it gave him freedom of mobility in a safe way.

  4. I just read about CP Awareness Month and Sabrina’s Bat Mitzvag. And oh my! Both of their pictures were amazing. You guys have raised some very pretty young folks that are also awesome. I love reading how Max overcomes challenges daily and how Sabrina is such a support for him and how she has grow since i started reading your blog. And we can’t leave out cutie pie brother Ben! You guys are so blessed! Thanks for allowing me to follow your growing family!

    1. Thank you, Brenda! Sabrina and Max have your typical love/dislike sibling relationship. Sometimes, they so adore each other and sometimes, they drive each other up a wall!


Thanks for sharing!

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