Cannabis Saved My Severely Disabled Child’s Life and Mine

  • My son is now 21 and has an intellectual disability.
  • At age 9, after trying several treatments, his neurologist approved trying cannabis to help him.
  • He is now a happy and loving adult.

Editor’s note: Please consult with your doctor before giving your children any substance or medicine. 

At one time, my wake-up call was my 9-year-old son’s screams. As soon as he woke, sometimes after shouting and breaking things in his room all night, the morning quiet would shatter with his voice. My instinct was to burrow deeper into the covers because nothing remotely good awaited me in the light of day. I never knew what I would find — torn clothes, feces smeared on the walls. I dreaded getting up, but I had to.

My son J., whom I refer to by his first initial for privacy reasons, has autism and an intellectual disability. He developed normally, if not precociously, for his first 18 months. His first words, “thank you,” came well before he was a year old. When he was 18 months old, a tumor on his spinal cord needed immediate emergency surgery. He had to be placed in a full body cast for a year.

He turned into a completely different child after the surgery. Parenting became an impossible feat. That, paired with his constant pain, made me look for alternative options to help him be the happy boy he once was. That’s how cannabis entered our lives and changed them for the better.

No one understood what happened to my son

As J. grew older, he couldn’t sit still and seemed to have no interest in anything. But everything — including the wind, food, dogs, and other kids — seemed to bother him. When he was bothered, he pinched, hit, and bit.

He was getting bigger. But developmentally, he wasn’t making any progress.

When he was 9, he cracked his head on walls with such force that I was sure he was giving himself concussions. This was explained to us as SIB, a self-injurious behavior — a feature of autism that was treated with powerful antipsychotics, a plain old hockey helmet, and institutionalization. We avoided institutionalization thanks to cannabis.

He also had gastrointestinal issues, which sometimes triggered his head-banging. After spending an hour in the bathroom because of a mix of constipation and diarrhea, he would bang his head even more. His doctor put him on anti-inflammatory meds after an endoscopy, and this helped with the banging.

But his pain was a moving target. After a year of using an anti-inflammatory at higher and higher doses, it eventually started to cause gut pain. I could tell because he had trouble eating, sometimes put pressure on his stomach, and screamed upon waking.

I started researching what else would help him

I spoke with other parents whose kids were on antipsychotics prescribed for “autistic irritability,” and when they started talking about side effects — some permanent and serious — I started researching safer alternatives: calming herbs, a new diet.

I still have the 2001 book “The Botany of Desire,” a thoughtful and scientific exploration of reciprocal relationships between humans and plants. In a passage about cannabis, I had scribbled “AUTISM?????” excitedly in the margin.

Michael Pollan, a journalist and author, wrote in the book about a peculiar property of cannabis — that it slows short-term memory formation. This made me think about J.’s sensory sensitivities, the overload of incoming stimuli that seemed to be preventing him from sitting still, and whether that might help him on top of cannabis’ potential bowel-pain-relieving properties.

In 2009, we lived in a state where medical marijuana was legal. There was so much stigma around cannabis, and the idea of giving it to children was unthinkable. The holistic integrative doctor we’d been seeing for J. basically hung up on me after saying, “Under no circumstances should you do this” — and that doctor knew about our dire situation.

J.’s unusually open-minded neurologist reviewed the materials I’d given him. And after having us do a round of synthetic cannabis pills that were ineffective, he finally wrote the scripts that allowed us to procure a medical-marijuana license for J. But that was just the beginning.

I worked with a grower for more than a year sorting through strains and formulations — vaporized, lipid-based, even juiced. I always tried the formulations before I gave them to J., who was 9 at the time. Some of them were so strong that even a minuscule amount put me to sleep for hours. J. tolerated much larger doses, but his side effects — including red eyes, “couch lock,” and loopy behavior — were rampant.

After a year of bad results, I was ready to give up, and so was his grower. There was one more strain he wanted to try, one that was a favorite of his for people with cancer and Huntington’s disease. I couldn’t tolerate even a drop of it. It was that strong. But we were desperate by then, so I gave J. a hefty dose.

He suddenly seemed happy.

Things started happening at once: He slept at night. He stopped hitting his head. He started smiling again. The pain crease he always had between his eyes smoothed out. His bowel movements improved. Eating stopped being painful, and our new pediatrician charted that he’d grown almost a foot in a year. Seeing the improvements, he merely said, “Keep doing whatever it is that you are doing.”

J. is now 21, and we live in New York City, where recreational cannabis for adults is legal.

Still, finding ways to access organic, high-quality, whole-plant material has proved more difficult than when J. was a medical-marijuana patient. The publicizing of J.’s case paved the way for autism to be added to the list of qualifying conditions for medical marijuana, including for kids, in several states — but not in New York.

While we have difficult moments, these happen a few times a year versus hundreds of times a day.

Now, I get to hear him say “Good morning, Mommy!” when he wakes up. He skips around the house in joy and gives me actual hugs, not the mechanical ones he was taught in school. Cannabis hasn’t solved everything, but it forged a brighter path than the nightmare trajectory he was on at age 9.

Marie Myung-Ok Lee’s novel “The Evening Hero” has taken her 18 years to complete. She teaches fiction at Columbia University, where she is a writer in residence.

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