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.