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In the early days of my son’s struggle with obsessive-compulsive disorder, I was driving 138 miles a day for his intensive treatment. Consequently, my car needed servicing. I was given a loaner, but I forgot to grab a bag full of items we needed to use for therapy out of my car. When I went back to get it from the busy service station, the guy asked me to describe the contents. I stood there thinking, “How can I ever explain what’s in our exposure bag?” Me — looking like the picture of decorum with a sack full of contraband in my mom car.
As a mother, the instinct to love and protect is primal. We particularly want to shield our children from pain. But what do you do when you are told that to help your child overcome a mental health struggle, you can no longer indulge, reassure or accommodate their fears? Dealing with OCD turns mothering upside down.
Dealing with OCD turns mothering upside down.
Our brains have helped us survive since the stone age, but with OCD, the fear trigger and response go haywire — studies of brain scans of people with the disorder suggest that parts of their brains are unable to communicate properly with each other.
OCD is not a euphemism for being organized (as sitcoms might have us believe). OCD is a cycle of obsessions and compulsions. Obsessions are intrusive thoughts, images or urges that cause extreme distress. Compulsions are the behaviors one engages in to calm the distress. For my son, Jack, it took the form of extreme contamination.
Jack’s first trigger began at the age of 10 on the school bus, when he heard a kid talking about “smoking weed.” He had heard warnings to say no to drugs and that drug use was dangerous. From that day on, the compulsive hand-washing and showering began to alleviate his fear that he had been exposed to drugs. This brought on an epic chain of fear of contamination across campus. In his mind, people, backpacks, books, classrooms and sidewalks became contaminated by drugs and were thus untouchable.
Exposure and response prevention (ERP) is the gold standard in treatment for OCD. During exposure a person is subjected to the thoughts, images, urges or things they fear. Response prevention is resisting the resultant compulsive behavior. We joined a long waiting list for intensive therapy programs. I would do anything for my son, and when we got the green light to begin therapy, I ignorantly celebrated. I had no idea that ERP would be traumatic for both my son and me.
Jack’s exposures were excruciating. Twice I was asked to leave the therapy room because my sobbing was “unhelpful to the therapeutic process.” I was staggered that this is what we had to do to get my kid well. And he didn’t get well quickly; he missed four months of sixth grade.
During ERP we brought items for exposure. Marijuana was my son’s primary trigger, but we started with low-level exposures. This included a variety of products that included hemp — incense, body lotion, rope and granola bars — plus Weed World magazine, books and movies on drug addiction, rolling papers, pipes and a small bong.
Never in my wildest dreams did I think I would be scoring weed for my 11-year-old kid!
Then it got really interesting. The substitute exposures for marijuana were not leading to substantial breakthroughs in therapy. It became obvious that Jack was still terrified and would likely need to be exposed to the root trigger — real marijuana — if we were going to get anywhere. I took it upon myself to go out and find a small bag of marijuana. Never in my wildest dreams did I think I would be scoring weed for my 11-year-old kid! And I certainly never thought I’d look a service guy in the eye and lie, “The bag in the trunk has a few toiletries and books.”
It took weeks, but Jack was eventually able to get to the point where could touch marijuana without too much distress. He was then able to regain a large portion of his world that OCD had rendered contaminated. Hypervigilance of exposure to drugs persisted, but Jack was able to reclaim a functional life. His OCD changes regularly, with new triggers and obsessions, and to this day we work through each challenge as it presents itself. Along this journey, I also got involved in OCD advocacy. This was an opportunity to guide parents like myself who were trying to find answers in these topsy-turvy situations. I’m now thrilled to launch my own nonprofit after my son: JACK Mental Health Advocacy, where my family and I are working to better serve sufferers and families supporting loved ones with OCD and anxiety disorders. Jack is now 28 and completing his graduate studies to become a therapist. He hopes to specialize in OCD.
After Jack conquered his OCD trigger of weed, someone asked me, “But could he smoke it?” A few years ago we were on a family trip to Colorado, where recreational marijuana is legal. And, well, let’s just say that mother-son bonding can take on many different forms. As I said before, I would do anything for my son.
Kim Vincenty is a mother, wife, speaker and mental health advocate. She is the founder of JACK, a nonprofit to help individuals and families affected by obsessive-compulsive disorder.