The fragile and complex autism ecosystem
Even when life is predictable and the autism variables are in homeostasis, I’m always looking at ways to make sure the very fragile and complex autism ecosystem is running in optimal form. Because J has been managing his obsessional behavior much better, because XC requires us to be more disciplined in his school and academic responsibilities, because J’s spontaneous expressive language is getting better and better, it’s been easier to see what deficits need a little more work or attention. Because J has been so cooperative with math, French, and other subjects that require daily after school study, I’ve been able to see that a lot of J’s struggles currently lie in his inability to sustain attention throughout a multi-step assignment. I’ve been able to tally the times J asks, “Where’s the dog going?” “What are you making for dinner?” “What’s W doing?” after he completes the first step of a math problem. I’ve been able to see how easy it is for him to get lost or forget the next step because he’s asking those questions and how many times I have to say, “Pay attention” or “What are you supposed to be doing right now.”
Because things have been going surprising well, I’ve been able to really pinpoint the problem areas instead of take my best educated guesses at the root cause behind multiple behavioral, impulsive, illogical reactions. I can see that J’s growing (again) and make that connection that maybe it’s time to up the ADHD medication because growing throws off the dosage and he’s really distracted (and verbally expressing those distractions) while he does homework.
It’s one of the few times I feel like I have a “somewhat” controlled experiment. Or so I thought.
Five days after J ran his very first XC race on his own, in the middle of a regular Tuesday afternoon practice, J started struggling with his run. “Mom, this is too hard, I don’t want to run anymore,” he announced during the two mile mark. “Mom, let’s switch. Let me ride your bike. It’s your turn to run.”
It was a nice day. Probably one of our first real fall days. It was slightly cool, and a little overcast. There was no wind. On paper it was a perfect day to run. Which was why I was a little confused. J only announces that “he doesn’t want to run anymore” when it’s 90F and sweat’s just dripping down his face, or when it’s really windy and you feel like you’re pushing against a wall, or, of course, when it’s raining.
“You’re fine,” I said, a little annoyed. “You’re half way there. You run this all the time. Don’t be lazy.”
J ran the 4 miles despite complaining most of the way. While we waited at the corner for the rest of the kids come in, I noticed J limping around with a good stiff limp.
Shoot. He wasn’t just being lazy.
J limped all the way to the wrestling room where the team finished their practice with their typical stretching regimen. When J was done, he hobbled to the bike rack but managed to bike home just fine.
Good, I thought. Maybe he just landed on his foot funny sometime during the workout. He seems to be able to bike okay. He’ll probably be stiff tomorrow, but practice shouldn’t be a problem. After all, I’ve tweaked my knee, ankle, and all sorts of things before while running and it’s always disappeared after a few days.
But J’s knee issue didn’t resolve itself in a few days. In fact, he hasn’t been able to practice for two weeks. He’s missed two meets now. It’s been really demoralizing. After J’s first and only solo successful race, he hasn’t been able to get back to that situation and that experience again. His routine has been off. Instead of being able to burn off anxious energy through mileage and speed workouts, he’s been trying to keep a workout going through exercise bikes and elliptical machines.
It’s just not the same. And it’s disrupting the very fragile and complex autism ecosystem.
I no longer have a controlled experiment.
We upped J’s ADHD meds right around the time of the injury. I’m supposed to call the dr back at the end of this week to let her know how it’s going–if I see any side effects like moodiness, irritability, sleep problems, behavioral problems.
And in the last two weeks J has shown a little of all of those “side effects.” He has been extra obsessional–we’ve had no big behavioral issues yet–but the frequency of obsessional words and numbers has increased. He’s had to work a lot harder at labeling those and keeping them at bay. He’s got a lot of extra energy. Saturday night he was up for two or three hours from about 1 am to 4 am.
But because of J’s knee injury, because we’ve really lost that physical piece for the last two weeks, J is off. Every day he tells me he wants to run practice. I can tell he’s just itching to run after he’s been cooped up at school for six hours. Because he’s not burning that energy, it’s harder for him to fall asleep at night. Having autism already makes him a poor candidate for a good night’s rest (many kids on the spectrum have a hard time falling and staying asleep). J doesn’t have as many positive opportunities to socialize with the other kids because it’s just him and a few other kids with shin splints in the cardio lab. He’s been to the meets to cheer on W, but he doesn’t get to run with the boys on his team. J has run almost every day for the last year. He’s never gone this long without running since we started this whole running thing.
All of sudden J’s autism ecosystem is off and none of the variables are in homeostasis anymore.
We’ve been trying to get J healed up so he can get back to practice. We ice, massage, and use ibuprofen. We’ve consulted the athletic trainers at school. We’ve taken J to the pediatrician (where he also got an x-ray to make sure there isn’t anything wrong there). This morning we tried a chiropractor for the very first time, since nothing seems to have helped these past two weeks. J came out of the appointment saying his knee “felt great.” Let’s hope it feels “great” enough for short mile practice this afternoon.
It’s really amazing how much running has become a part of J’s therapy. How it’s become essential to his functioning. At first I was really hung up on the injury because I wanted to be able to keep that positive meet experience going. Now I just want J’s autism ecosystem running properly again.
The big question right now: Are those “side effects” a result of the lack of vigorous physical routine, or are the result of the increase in medication?
I hope we’ll be able to sort that out soon.
