July 31, 2013
Educating Coach B
In the spring of Maddy's 9th grade year, she was feeling a bit better and wanted to take gym. I was skeptical because that seemed a big step considering how fatigued she'd been. But we changed her schedule to include a gym class.
Before letting her attend, I talked to Coach B so he wouldn't expect her to perform as a normal 14 year girl could. (I still was under the impression that Maddy had mono at this point.) So I talked to him, gave him some parameters and let things unfold. A few days later Maddy reported that he had been pushing her to run and she couldn't do what he wanted. So I made another appointment with Coach B. I got him on his lunch break, and we sat in the faculty room while I tried again to explain her limitations. What I asked him to do was to let her do things her own way. If he wanted the class to run, and she walked, good. If she could only walk for 5 minutes, good. If she just needed to sit that day, good. It was obvious this approach was very different than what he was used to, and he was struggling on how this would all work out. I told him that Maddy wanted to be in the class, and she would do what she was able. So I left and crossed my fingers.
A couple of weeks passed, and Maddy's comments clued me in on what was happening. Coach B had obviously been watching her, and was starting to pick up on her body language, and gauging what she might be capable of that day. One of the quirks that had developed over the previous year was what we called Maddy's mono walk, or mono shuffle. The more fatigued she was, the more pronounced it became. It was a strange 'walk from the hips with straight legs' movement. (It's hard to describe but very distinctive, I assure you.) Coach B was keying on that walk and would invite her to sit that day if he perceived that she was struggling. I was so pleased! It really gave me hope that people cared. This also took pressure off of Maddy. She knew whatever she could do in gym was acceptable, and having the supportive attitude of the coach was wonderful.
For a regular kid in middle school, having a helicopter parent is not a good thing. But with a kid with a chronic illness, having an ADVOCATE is crucial. Kids have no power to negotiate anything in middle school and much of high school. It takes a parent and hopefully medical backup to put parameters in place to allow that kid to survive and maybe to thrive. And over time, as that kid matures, they learn to be their own advocate.