"Get him as much therapy as possible. Over-therapy him."
Those are the words of a renowned pediatric neurologist, spoken to Dave and me the week after Max was born. The doctor been called in for a consult; physicians at our hospital had never before treated a baby who had a bilateral stroke at birth.
I remember this doctor staring kindly at me as I scribbled his words. "You remind me of my wife, she's always taking notes," he said. He didn't give us false hope, but he did talk to us about the "plasticity" of baby's brains and how malleable they are.
I took his "over-therapy" words to heart. As a baby, Max had 12 to 15 sessions of therapy every week, seven days a week. Once he aged out of Early Intervention and went to school, we supplemented with private therapies at home; I regularly did battle with the insurance company to cover them.
Therapy has made a world of difference in Max's abilities. He wouldn't be doing as well as he is if it weren't for the smart, resourceful, dedicated, caring and just plain saint-like therapists who have guided both him and me over the years. We've used their suggestions to make therapy a natural part of Max's life, whether it's getting him to reach for a toy to stretch his arms or making a game out of massaging his mouth, to help relax it and encourage the flow of words.
These days, Max gets daily therapy at home after school. He doesn't have much time for other activities, and lately this has weighed on my mind. As Max has gotten older he's been increasingly receptive to trying new things, and I think he needs more balance—a little less formal therapy, a little more other activities. This goes against my instincts and the "over-therapy" mandate seared into my head in the NICU, and I've struggled with it.
This week, I made a move: I signed Max up for three January/February cooking lessons through a local group, and I cancelled three occupational therapy sessions. He'll grasp a spoon or whisk, stir, pick stuff up, and otherwise work his fine-motor skills. And then, of course, there are the social aspects—giving Max the chance to hang with other kids and have fun.
It would also be so awesome if he learned how to cook because I suck at it.
There's a bigger decision I've been mulling over. Last summer, I checked out a day camp with an amazing inclusionary program. Max would be given a "shadow"—his own counselor—and he'd be in a group with so-called typical kids.
Max is in school throughout the summer, and I'd have to pull him out for two weeks for this camp. That's been a huge "Hmmmmmm...." Missing therapy is one thing, but classes are another. Max is making good progress with grasping math concepts and reading. I know two weeks isn't that long, yet he's worked so hard for what he's learned and I'd hate to see him regress.
I emailed the camp director and asked if parents sometimes pull their kids out of school for camp.
"It all depends on their goals," he wrote back.
Dave and I spoke at length.
Our goals are for Max to achieve and succeed to the best of his abilities.
We'd also very much like him to be part of an inclusionary program; he's never tried one before. It could do a lot for his confidence and his sense of place in this world.
But we've also prioritized a new goal for Max: To have fun.
We're going to speak with his school about pulling Max out for camp. Hopefully, they'll agree it's A Good Thing.