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How we saved our son from OCD

Inside Laurie Gough’s son’s heartbreaking diagnosis of obsessive-compulsive disorder—and how she fought it


 

Although I used to be a travel writer, I took my most frightening journey only recently, with my family, without ever leaving our small Quebec village.

After my father died in 2012, my son was so shattered that he transformed from a regular, bright, happy-go-lucky, soccer-loving 10-year-old into a near-stranger dominated by bizarre rules of magical thinking all designed to bring his grandpa back to life.

My husband and I were alarmed that, for such an even-keeled kid, our son would plunge into an existential crisis after losing his grandpa. He was unable to grasp the finality of death; a tidal wave of grief was forever smashing him down and he couldn’t find his way to the surface. But as winter turned to spring, I started noticing his grief easing up a little. He was no longer crying into his pillow at night and had started laughing again. Except, now he was doing something else that I found peculiar.

One evening I was sitting beside him in our living room while he seemed to be unconsciously tapping each elbow onto the back of the couch. Four taps of the left elbow, four taps of the right. A few tapless minutes would pass and then he’d start the routine again. Over the coming weeks, what we called “making things even” became more complex, seemingly full of complicated rules. One day he started turning his head as far as it would go over his shoulder, then he’d turn his head to the other side. But it didn’t stop there. He’d twist his head twice on the first side, then twice again on the other side. It looked like an exercise for old people. “Do the kids in school notice you doing that?” I asked him one day while he was building a Downton Abbey-esque estate on Minecraft.

“Yeah, sometimes,” he said, not looking up from my iPad.

“Don’t they find it weird?”

He shrugged. “They just think I’m stretching my neck.”

I decided to google, “kids making things even.” I doubted my search would lead anywhere since those words together seemed so arbitrary. But I was shocked to find link after link with that very phrase, including one that led to something called “symmetry rituals.” My ribcage tightened. Symmetry rituals. That’s exactly what Quinn was always doing, performing rituals to make everything symmetrical on both sides of his body. I found a forum where a teenage girl was describing how if she tapped her left forearm, she’d have to tap her right forearm. It was getting too complicated and distracting, she said, and her friends were starting to notice. This was just like Quinn. How could something seemingly so random be so ubiquitous? I looked up at the URL and inhaled a deep startled breath. It was a website for obsessive compulsive disorder.

At what point, I wondered, did Quinn’s mourning morph into OCD? Was it a single indecipherable instant or more gradual, like the day you realize one season has finally surrendered to another? Why had he stopped crying for his grandpa and started wanting everything to be symmetrical instead? Perhaps death had simply been too overwhelming for his young mind to comprehend and his brain found these behaviours the best available coping mechanism for unfathomable loss, loss that triggered fears about future losses and his inability to prevent them. Was he trying to control the uncontrollable? Physically save himself from drowning in his own grief?

Quinn with his grandfather. (Photograph by Blair Gable)

Quinn with his grandfather. (Photograph by Blair Gable)

I spent hours researching OCD and was relieved to discover that with advances in brain science, where scientists have learned that the brain isn’t rigid after all, but malleable and “plastic” (the science of neuroplasticity) a revolution has taken place. Cognitive behaviour therapy alone actually causes chemical changes in the brain and by changing your behaviour, you change your brain wiring, finally getting relief from OCD. By performing “exposure” exercises, the brain re-circuits itself until the obsessions and compulsions lose their appeal. It’s hard work but it’s pretty much the only option. My husband Rob and I started Quinn on the exercises (called ERP—exposure response prevention) immediately. We were also advised to give him antidepressants to lower his anxiety for the ERP to work. We said no to the drugs. I’d read too many horror stories about their effect on kids.

The more I read, the more puzzled I became by the compulsive behaviours themselves. Where did they come from? Quinn now had to leave a room by the exact route he’d used to enter it, sometimes even walking backwards, retracing his steps. This wasn’t any more unusual than his other baffling behaviours, but what I found intriguing was that this one, like making things even, seemed so common for people with OCD. Quinn called it erasing. According to the OCD Foundation, erasing, cancelling, and undoing are all common OCD compulsions.

For Quinn, everything had to go back to zero to be symmetrical. On an OCD forum, a teenager had written that he’s always late for class because it’s complicated negotiating the hallways when he has to walk back the same way he’d come before proceeding elsewhere. A mother wrote about her son having to “backtrack incessantly” wherever he went. When I was in kindergarten, if I stepped on a sidewalk crack with my left foot, I’d have to step on the next crack with my right. I wondered what was happening in the machinery of people’s brains. Did this need for symmetry trace back in our evolutionary history? And if so, why? None of my books on OCD discussed this nor could I find anything online. It wasn’t until I happened to read a book on a completely different topic—Riveted, by cognitive scientist Jim Davies, a book about what makes things compelling—that I found a possible answer. He wrote that being able to detect patterns has been crucial to our survival. In the natural world, being able to pick out the face of a living thing hiding in the forest could save your life. Faces of living things—humans, snakes, cougars, wolves—are symmetrical. We’re programmed to pay attention to symmetry, to be on alert for things being even. Finally, I had an answer for why Quinn might crave symmetry. And not only are we always looking for existing patterns, our brains have adapted to see patterns where no patterns actually exist. Science writer Michael Shermer, author of over a dozen books including Why People Believe Weird Things, writes about how we’re descended from early hominoids who were most successful at finding patterns. Patternicity is the tendency to find meaningful patterns in both meaningful and meaningless noise. According to Shermer, this mental process is the basis for all superstition and magical thinking. For those with OCD, this primal tendency of being hyperaware of patterns is in overdrive. It’s an adaptive behaviour—one that has kept our species alive—gone rogue.

Something else I found compellingly odd in my OCD research, and in observing OCD in my son, was that OCD rituals seemed strangely religious. No matter how many times my husband and I told Quinn that nobody comes back from the dead, the goal of all of his behaviours was to bring his grandpa back to life. (If I say my sentences backwards, Grandpa will come back. If I keep my eyes closed for the rest of the day, Grandpa will come back.) This made me wonder how far back magical thinking goes in human evolution, back to when our primitive minds were so fraught with fear that we engaged in spells, curses and superstition to ward off evil or to make things happen. And magical thinking isn’t a phenomenon confined exclusively to the remote past. Today’s religions are full of it. In fact, for some reason that still isn’t understood, religious rituals weirdly echo OCD rituals. I was reminded of this every time Quinn placed his hand on his heart, looked up at the sky and started chanting, “Please come back, please come back, I love you, please come back,” over and over. Where did he get this hand-on-heart, heaven-gazing chant behaviour? Certainly not from his non-religious upbringing. It made me think of Catholics making the sign of the cross on their hearts and saying Hail Marys while counting rosary beads. Other religious rituals that curiously resemble OCD rituals include numerology and counting, repetition of mantras, hours of body cleansing, and rules on how to enter and leave holy places. Not performing these rituals leaves the religious participant and the OCD sufferer with a sense of dread. Where do these religious rituals originate and why do people with OCD—even little kids who know nothing of religion—also perform them? Nobody seems to know.

Even though we were working on the ERP, Quinn was still engaging in a storm of rituals that debilitated his entire day. He couldn’t even read anymore since he had to read all his sentences backwards. We decided to take him out of school temporarily. Rob proposed that he and Quinn work on the ERP exercises every day instead of school work. One afternoon, I went to talk to Quinn’s teacher to explain why he’d be absent. The young Grade 5 teacher’s eyes were full of concern as he went to Quinn’s desk and pulled out his math workbook. “I was going to tell you this so I’m glad you’re here. Take a look.” I stared down at the pages of my son’s workbook, which was supposed to be full of solved multiplication problems. Instead, tiny words were scrawled across the bottom of the pages, the same words, dozens of times, the same ones we’d heard for weeks: “Please come back, I love you. Please come back.” It was the same plea over and over, a boy’s impossible prayer hidden in a worn math book. Sudden tears blurred my vision. A kid I knew bounded into the class just then to rifle through a desk. Quinn had helped teach this kid how to ride a unicycle when they were younger. The boy said hi to us and shot out of the room again: untroubled, shoes untied, a regular kid on his way to build a fort or buy a chocolate bar with his friends at the dépanneur. Why wasn’t that Quinn? I felt the cruel randomness of life weigh on me.

Quinn with his mother and father in Wakefield, Quebec August 17, 2016. (Photograph by Blair Gable)

Quinn with his mother and father in Wakefield, Quebec August 17, 2016. (Photograph by Blair Gable)

That same night, however, Rob was elated. He told me he’d finally found a behaviour that Quinn could work on stopping. The idea of ERP is to expose yourself to your fears. A child who is afraid of germs forces herself to touch a public doorknob for a set amount of time. The anxiety initially skyrockets, then gradually decreases when she realizes nothing cataclysmic happened even though she’s still touching the doorknob. She’s literally rewiring her brain, weakening the bad connection and forming a new one. Weeks before, Rob and Quinn had made an Excel chart to rate all his OCD behaviours on a scale of one to five, like a Richter scale of anxiety. In the beginning, Quinn rated every single behaviour as a five, meaning not doing those things would cause him the highest possible anxiety. You’re not even supposed to work on the fives. But Rob finally discovered one behaviour—retracing steps—that Quinn could work on not doing because there was a way to reverse it if he had to. Quinn could walk into the living room and try to remain there as long as possible without backtracking. He knew that if his anxiety got really bad, he could just retrace his steps. He couldn’t “undo” any of the other behaviours. The first try, he lasted 45 seconds without backtracking, which was a triumph. Rob told him that if he lasted a full two minutes the next day, they could play with toy cars together. Quinn loved that idea. Rob thought they’d cracked the code. ERP was working.

It was true that we were seeing gradual improvements with the ERP, but sometimes, Quinn didn’t respond to it at all. I wondered if the giggly little boy Quinn had been would ever come back. As the weeks passed, Rob and I became so hollowed out we were like ghosts you could see through. One morning, after seeing the “OCD Monster” enslave Quinn with yet another ritual—one that immobilized him—all I could do was run out to our parked car, roll up the windows, and start sobbing, howling over and over for the sad lost echo of my son. That night, Rob and I realized we needed to tell all our friends, everyone we knew. Until then, only a handful of friends had known. We hadn’t meant to keep it a secret. It had just become that way on its own because we’d been so preoccupied with it.

I sent an email to all our friends and neighbours explaining why they hadn’t seen Quinn around on his bike lately, or us out on our street or in our village of Wakefield. “We know that the real Quinn is still in there somewhere. If people could visit once in a while that would go a long way in lifting our spirits. We need our friends and we need Quinn back. There’s nothing more important to us in the entire universe than getting our son back to the happy kid we used to know . . . ”

After writing that letter, the phone began ringing almost immediately. Emails flooded my inbox. People started knocking on our door and, as it turns out, the OCD Monster hates visitors. A friend of Quinn’s who lived down the street started coming over to play every day. An astounding outpouring of love and support began to flow into our lives from friends, neighbours and fellow Wakefielders. Some sort of sublime community healing power was at work.

One day, I couldn’t find Quinn in the house. I went outside and thought I heard singing. The singing got louder as I walked down our laneway. When I got to the end of our laneway, I looked up. Quinn was at the very top of our pine tree. When he saw me he stopped singing and called out, “Hi, Mummy!” and started climbing down. He jumped off one of the lower branches and landed in front of me. His face was flushed pink. I asked what he’d been doing. In a steady strong voice, looking me in the eyes, he said, “I sang ‘Somewhere Over the Rainbow’ to Grandpa and I let him go.”

I stared at him. A blue jay squawked nearby. “You what?”

“I sang the whole song. Then I let him go.” He said this matter-of-factly. He was smiling. There was a calm in his face I hadn’t seen in weeks. He began walking up the lane, saying he wanted to go to soccer practice. I stood there watching him as he made his way up the lane kicking a stone like a soccer ball. Could it be true? All I could do was whisper a hushed prayer up into the tree: Please.

I’d realize later that letting his grandpa go up in the tree that day healed something that was broken in his heart. OCD was still quietly slithering in the pathways of his brain, but the fight was now on. What came next would be a final battle bordering on the miraculous.

The brain has been called the most complex object in the known universe. As many neurons exist in our brains as there are stars in the Milky Way. Is it any wonder that glitches like OCD sometimes arise? The way our brains work is the direct result of millions of years of evolution. Who knows how many of our ancient ancestors might have experienced what we now call OCD? If only they knew then what we know now: OCD can be successfully treated, without drugs, and even disappear altogether, as has been the case with Quinn.

It has been three years and the OCD Monster has never made a comeback.

Laurie Gough’s new memoir, Stolen Child: A Mother’s Journey to Rescue Her Son from Obsessive Compulsive Disorder, will be released by Dundurn in September


 

How we saved our son from OCD

  1. Kudos to Laurie and Quinn for sharing their story. OCD is such a misunderstood and misrepresented disorder, so it is important that these stories be told. My son had OCD so severe he could not even eat, and ERP therapy literally saved his life.Today he is a young man living life to the fullest. I recount my family’s story in my critically acclaimed book, Overcoming OCD: A Journey to Recovery (Rowman & Littlefield, January 2015) and discuss all aspects of the disorder on my blog at http://www.ocdtalk.wordpress.com. There truly is hope for all those who suffer from this insidious disorder! I look forward to reading Laurie’s book.

  2. Kudos to Laurie and Quinn for sharing their story. OCD is such a misunderstood and misrepresented disorder, so it is important that these stories be told. My son had OCD so severe he could not even eat, and ERP therapy literally saved his life.Today he is a young man living life to the fullest. I recount my family’s story in my critically acclaimed book, Overcoming OCD: A Journey to Recovery (Rowman & Littlefield, January 2015) and discuss all aspects of the disorder on my blog at http://www.ocdtalk.wordpress.com. There truly is hope for all those who suffer from this insidious disorder! I look forward to reading Laurie’s book.

    • Hi Janet,
      I read your book. It was very inspiring! Thank goodness that brain research has taught us that the brain isn’t rigid after all and ERP can actually rewire our brians, especially with kids. OCD can be overcome without drugs!

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