I give my autistic son pot.

I give my autistic son pot.

I give my autistic son pot.

What women really think about news, politics, and culture.
April 19 2010 10:26 AM

Why I Give My 9-Year-Old Pot, Part 3

We hit a snag and made a big discovery about how medical marijuana works for him.

This is the third DoubleX essay from Marie Myung-Ok Lee about treating her autistic son with marijuana. Read her first essay  here and her second essay  here

Marie and her son. Click image to expand.
The author and her son

Last summer, we reached the six-month mark in our cannabis experiment. We'd been using medical marijuana to help quell our autistic son's gut pain and anxiety, and we were seeing some huge changes in his behavior and, presumably, his happiness. J was smiling, interacting (one of home-based therapists said she'd never encountered such an affectionate autistic child), even putting his dirty dishes in the dishwasher—rinsing and everything!—not only without being told, but without ever having been asked to do such a thing. The more I'd been reading, along with J's doctor, about the effects of cannabis—analgesic, anti-anxiety, safe—the more it seemed a logical choice. I've also heard from other parents who've decided to try cannabis for their children. One of the kids has Smith-Magenis, a genetic disorder that includes autismlike behavioral symptoms including self-injury. Another is an autistic child who'd refused to eat and was near death. Post-marijuana, he is thriving. The Smith-Magenis boy, who'd been about to start court-ordered medication, is also doing well.

Then, after all this affirmative news and a beautiful summer, we hit a snag. But from it, we learned an awful lot about what the cannabis is doing for J.

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Our mj farmer, Organic Guy, needs to make a living while he grows medical cannabis for his three patients. Being an illegal street drug dealer is lucrative; being a supplier of medical cannabis is not. By the law of our state, Rhode Island, Organic Guy is paid only for expenses. Growing J his medicine takes a lot of daily labor and infrastructure, but if Organic Guy has any extra harvest, he can only donate it, not sell it, to another licensed patient. Some states, such as Colorado, set up and regulate retail outlets for medical marijuana. In California, for instance, cannabis buyers' clubs, as they're called, actually outnumber Starbucks. But in Rhode Island, there are no such options for growers.

And so last summer, Organic Guy moved to one of the nearby resort islands to take a job at a restaurant. Before he pulled up stakes on his marijuana farm, he made sure that J had extra supplies, including stockpiling dried herb in the freezer of his accommodating parents. Organic Guy promised he'd start up again in the fall. J, in the meantime, was doing so beautifully on the cannabis that, since my husband, Karl, had the summer off, he made the heretofore unthinkable suggestion that I finally focus on my novel. I actually felt OK taking him up on the offer and spent a few weeks at the artists' colony Yaddo.

In September, Organic Guy returned, sans tan (he'd worked every minute he could), bearing more herb, just in time. He sounded like he was having a bit of trouble finding a new place to grow. Previously, he'd set up the plants in his apartment, but the security issues plus the skunky smell, which got into his hair and clothes, persuaded him not to do this again. I e-mailed around to see if some of my organic-food-growing, cheese-cave-using friends knew of a good spot. I'd so thoroughly begun to see cannabis in the same light as any other beneficial botanical we'd been giving J (like burdock root) that I neglected to mention I was inquiring on behalf of a licensed grower of medical cannabis. My friends wryly asked if I was starting my own illicit organic-pot operation. I cleared up the confusion, but no leads turned up.

In the meantime, cracks started to appear in J's cannabis-aided serenity. One day, his frustration boiled over into a tantrum. Next, hits. An occasional bite. Then the fabric-ripping screaming, sitting with toes pointing down at the floor—his clearest pain sign. Next, he woke up at night, crying and screaming when he had to go to the bathroom. One day, I noticed—could it be?—toothmarks on the neckline of his pajama top (pre-cannabis, he used to chew and eat his shirts and bedding). I went over his diet with a fine-tooth comb, looking for possible allergens I'd overlooked. I even upped his cannabis dose a bit by adding one more pot cookie. It only made him alternately a bit silly and belligerent. The number of reports he brought home for acting aggressive at school started to tick upward. For Karl and me, this backslide was awful, like when J was 2 years old and started to lose his words. I couldn't believe it was happening.

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I called Organic Guy, to see if he had any ideas.

"It could be because he's not getting any White Russian," he said. "The stuff you have is, well, a mix of all the stuff I had left."

It took me a second to understand. J was getting a mix of Organic Guy's odds and ends.

"Is there any White Russian in this mix?"

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"Nope."

"And when will you be getting more?"

"Depends on when I can start growing again. Hopefully soon."

There are two major types of marijuana. Sativas are the leggy plant with the five-pointed leaves, the cover girls of cannabis—they can make you feel more social. Indicas are squat and bushy with gigantic resinous buds that sparkle like Christmas ornaments and tend to induce pain relief and sleepiness. Organic Guy had started J on a variety of both sativas and indicas. We hit the magic combination with White Russian, a hybrid of two strains: AK-47, a sativa that's peaceful despite its aggressive name, and White Widow, an indica/sativa hybrid. This seemed to be a perfect balance, giving J pain relief and making him more social without sedating him. The boy who used to push us away had begun to cuddle!

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But by October, J was getting a mixture of all the previously rejected strains, and this grab bag wasn't working. We were in trouble. Organic Guy didn't have a place to grow yet. He wasn't anywhere near planting his first seed, which would then take 90 days to grow, and then weeks to dry and cure. I called our patients' advocacy group, Rhode Island Patient Advocacy Coalition, and what I learned made me worry more. There was a communitywide shortage of White Russian, a favorite with end-stage cancer patients because of its superior pain-relieving properties. Organic Guy said that J consumed enough cannabis each day to knock out a 300-pound man. That suggested enough pain to make me shudder.

JoAnne, RIPAC's director, promised to canvass growers to see if a generous soul would donate some White Russian. This didn't sound too likely. In desperation, I started talking about our plight to friends in an autism group that focused on treating our children with alternative medicine. One tipped me off to a mother we knew whose autistic child had gotten a lot better and who wanted to do something to help other people's kids. She'd done her research and settled on … medical marijuana.

Gardening Girl, let's call her, was licensed. But she had only seedlings in her nursery so far. And she was not growing White Russian.

But Gardening Girl did have a giant resinous ball of an exotic Afghani strain called Kush, an indica with such effective pain-relief properties that it was chosen by a British pharmaceutical company making a medical cannabis product. (Meanwhile, in the United States, a Republican congressman introduced legislation to increase the penalties for selling Kush, tagged as "super pot.") Gardening Girl had procured the Kush for a patient who'd changed her mind about wanting it, and so she donated it to us, with the license numbers neatly typed out.

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I didn't want to waste a molecule of the Kush, so I divided it between a batch of olive oil and glycerin (a favorite way to extract herbal properties into a naturally sweet, gluten-free base). This filled the house with the smell of pot while I stirred the simmering brews for hours, heating it enough to get the materials to react without making it burn, which would ruin everything. J loved the sweet stuff, which he took from a dropper, and I used the oil for his cookies. But after a week, the results were spotty. J was somewhat happier and in less pain, but he was still irritable and violent, mixed with unending laughing fits. The Kush wasn't organic, so I didn't know if J was reacting to the difference between it and the White Russian or to pesticides or other contaminants.

Salvation came in late October when Organic Guy managed to score some White Russian from a protégé. We bought a baggie of dried leaves, which Organic Guy did me the favor of making into an extra-strong batch of olive oil for J's cookies. Within two weeks, the number of times J was marked for behaving aggressively at school dropped back to the single digits, even zero on some days. This was all the scientific evidence we needed. We'd learned an object lesson: helping J manage his pain, and the aggression it caused, wasn't as simple as merely giving him some pot, any pot.

With the return of the White Russian, I felt confident enough by Thanksgiving to make a big meal. Previously, a fragrant house often overstimulated J; last year, he dumped his full Thanksgiving plate on my very pregnant sister-in-law. This time, we sat, said grace. J didn't lunge and try to grab the food. He didn't stab Grandpa with a fork like he had last Christmas. He just ate with gusto, and, I think, even a little appreciation.

When Organic Guy finally found a nice place to grow, I went for a visit. He has built a special place just for J's White Russian: an enclosed, foil-lined room with huge charcoal filters to counter the smell. The plants are all potted, nourished with custom organic compost, and watered with their own irrigation system. A strict lighting schedule maximizes the production of all the beneficial chemicals, and Organic Guy also says "the ladies" like different music at different times of the day. (Unpollinated female plants produce the most medicinal effects.) Pachelbel's Canon was playing while I was there, and the ladies looked healthy and health-giving. Their emerald green leaves and bulbous buds sparkled in the intense overhead lights, growing and growing, just for J.

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