Medical marijuana: I give my autistic son pot.

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May 16 2011 10:32 AM

Why I Give My Autistic Son Pot, Part 4

Two years in, and I'm still flying solo.

(Continued from Page 1)

At the end of our visit, J started to cry and melt down a bit—clearly, he'd had enough. I was upset because he was upset, but then the doctor commented, despite herself, that she couldn't believe how much better he was doing—and I was reminded, again, how far he's come.

Two years ago, I wanted so badly for J to learn how to ride a bike. After my husband and I bought him a bike with training wheels, he would sometimes sit on it for a minute or two, try to pedal, and then have a tantrum, hurling the bike in frustration. His classroom bike-riding lessons weren't going any better. At a school meeting, the consensus among his teachers and other professionals was that independent bike riding was something he'd probably never learn.

But cannabis not only mitigates J's pain, it also seems to help him to focus. In the modern world, we are constantly bombarded by sensory stimuli, but marijuana's effect on short-term memory allows a user to focus intently on a single sensation (that "Whooooaaaa, man … look at that flower" feeling). One feature of autism is a heightened, disordered, nondiscriminating sensitivity, so that autistics seem to see and feel and hear and smell everything at the same time. They're overloaded with information, both relevant and irrelevant. How scary that must be—and then, in J's case, to possibly have unremitting pain on top of that. No wonder he uses aggression as an escape, while other autistics may do things to withdraw, like rocking in a corner. But with cannabis (which also regulates anxiety and stress), I noticed that J had a much higher tolerance for activities that involve multiple steps, like unloading the dishwasher.

Bicycling, when you think about it, involves myriad functions: coordination of gross motor movement with the vestibular, visual, and proprioceptive systems that regulate balance. On a nice weekend I brought J, his bike, his helmet, and a wrench to a nearby private school that has a bunch of wide, paved paths. I removed the training wheels from his bike, put him on it, and gave him a push, figuring that once he realized how good it felt to bike—to move along on his own power—he was going to love it. He pedaled and immediately tipped over, laughing, as he was expecting the training wheels to be there holding him up. But after a few tries, he started to get it. And before the afternoon was over, he was biking independently.

A few weeks later, the clinician in charge of J's afterschool therapy came for his monthly visit. I told him that I wanted to show him something. We walked over to the private school, which was abuzz with afterschool activity. J, unfazed, mounted his bike and started pedaling. The clinician was agog as he watched J, incredibly graceful as he maneuvered the bike around a long, paved oval.

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"He looks—wow. I mean, most autistic kids just ride the bike straight into a wall, but he's looking and steering and saying hi to us. I mean, you can hardly tell—"

"Run with me!" J called, and the clinician broke into a lumbering jog alongside him. J playfully skidded out by riding on his brakes—exactly the thing this man's neurotypical sons do.

"How'd you get the idea to do this?" he asked, panting. I tried not to audibly sigh.

I know many people in J's life mean well and work hard for him, but expectations tend to be low. And while this may merely be an attempt to be realistic, to avert disappointment, it also pains me. I am aware that no one thought he would ever have the concentration to manage the complex physical coordination necessary to ride a bike. But it's true: If you want something done right, sometimes you have to do it yourself. No one cares about or knows our son as well as my husband and I do, and if I have to risk being thought of as the pot-pushing mom with a nontraditional bicycle-learning protocol who often won't listen to expert advice, then so be it. The experts don't live in my house, nor do they get to reap the rewards, like this morning, when J woke up, smiled, and wanted a hug—the boy who formerly woke us with a scream of pain. The boy who, since he was 3 years old, never gave us hugs or let himself be hugged, because he couldn't bear to be touched. (Fittingly, the next person he bestowed a hug to was Organic Guy, his grower.) Now, when he's proud of something, like his awesome bike riding skills, he glances to find my face, to make sure I'm looking.

We are still incredibly limited in the things we can do as a family. For now we can forget about getting on a plane to see Grandma in Minneapolis. But we've made successful trips to the beach, the farmers' market, the zoo, and we've even gone on family bike rides. A friend, who happened to see us while we were out riding one day, commented that she'd never seen J (or us) looking so happy. I'm grateful medical cannabis is legal in our state and that I didn't have to become an outlaw just to procure medicine for my son. I may never get that Mother of the Year award, but that's okay, because J knows that I'll do whatever it takes to get him what he needs. When he gets on the school bus in the morning, he wants reassurance, and before he boards these days, he often looks at me and asks, "Everything will be all right? Promise?" And I promise.

Marie Myung-Ok Lee’s novel will be published by Simon & Schuster in 2015. She teaches creative writing at Columbia University.

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