Quinn and I were walking down our steep gravel road into the village one day in early 2013, snow crunching beneath our feet. It was February, when the bleak lid of winter hides the sun. I looked at my ten-year-old son trudging behind me and sighed. “You don’t seem very happy these days, Quinn. I know the weather’s lousy but where’s my happy little boy?”
Sudden tears pooled his eyes, spilling down his cheeks. He stopped walking and what he said tore a rip in my chest: “I’m not happy. I used to be. But I haven’t been since Grandpa died.”
Six months had passed since my dad had died and still Quinn was crying himself to sleep. We tried everything to comfort him, told him that Quinn was lucky to have been close to his grandpa, that grief is the price you pay for loving someone. I told him he’d always have the memory of his grandpa and that he led a long happy life.
But it didn’t help much. His grief was intense and alarming. Quinn had always been a regular, happy kid—he loved running and playing soccer, knew the make, model and year of every vehicle passing, had gobbled up the Harry Potter books, and skied with his grade four friends after school. Who was this depressive child weeping into his pillow every night? Was it death that terrified him? The realization that this is all going to end some day for all of us? Was he afraid of his own death? Of ours?
“No,” he kept insisting. “I’m sad about Grandpa.”
I started reading books on grieving children and found I could relate to something Barbara Coloroso wrote in Parenting Through Crisis: that confronting the reality of death directly and honestly with children is painful at the best of times but especially today in our death-defying, cure-everything-now, fix-it-fast society and with so many rituals of our ancestors abandoned.
Somewhere we’d missed something in helping Quinn deal with his grandpa’s death, and realized we’d probably made a mistake in not having some kind of funeral. All we did was hold a memorial at my mother’s house one afternoon.
“That’s it,” said my husband, Rob. “We need some kind of ritual for your dad. We could go to Toronto in June when Quinn gets out of school. We could take your dad’s ashes and throw them in places he always talked about, his old neighbourhood, the woods where he went bird watching.”
I leapt off the couch. “Rob, you’re amazing! We’ll call it the Grandpa Tour!” I was already imagining how cool Quinn would think this was and how it might set free some of his sorrow.
One spring day, I noticed Quinn was still wearing my dad’s old silver watch that my mother had given him. It was too big for his little wrist, but he never took it off. He’d tap it—perhaps it gave him comfort, thinking of his grandpa—but soon he was to touching it more times than seemed necessary. He was also doing something else I found unusual. I was sitting with him in the living room one day, both of us reading, when I noticed that he was unconsciously tapping each elbow onto the back of the couch. Four taps of the left, four taps of the right. He was also tapping the watch. A few tapless minutes would pass and then he’d start the routine all over.
Over the coming weeks, his ‘evening-off’ became full of complicated rules. Everything had to be symmetrical. One day he started turning his head as far as it would go over his shoulder, then he’d have to turn his head over the other shoulder. But it didn’t stop there. He’d go back and twist his head twice on the first side, then twice on the other. “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?”
“They just think I’m stretching my neck.”
I wasn’t particularly concerned. Life is a series of events that seem important at the time. When you look back sometimes you wonder why you ever worried about anything. Quinn seemed happier lately and that’s all that really mattered. Perhaps the spring weather was melting some of his grief.
As part of our Grandpa Tour in Toronto that summer, we went to the Humber River valley, where my dad and his brother Bill used to build forts and go bird watching, and walked into a deep grove of deciduous forest, the dirt trail swallowing the sound of our footsteps. I fished out containers of ashes. When I offered Quinn one, he shook his head. Instead, he watched carefully as I tossed some at the foot of an old wrinkled maple and a sapling nearby. “These ashes will sink into the dirt and become part of the trees. It’s the cycle of life, Quinn. Grandpa will live on in this little tree, and in this old one. So a part of him will never really die.”
“Really, that’s true?” I nodded. “Can I have a container?”
He threw ashes around five different trees. My favourite was the tree he’d found with the ancient heart carved into it. He smeared ashes over the heart.
I was hoping something had clicked that day, that Quinn was finally making peace with his grandpa’s death. But the next day, as Rob, Quinn, and I explored the city, Quinn was hopping, skipping, and jumping over the sidewalk cracks, and still doing the twisty thing with his neck. It was unnerving.
Back in Wakefield, I Googled, “kids making things even.” I doubted I’d get anything; those words together seemed so arbitrary. But I was shocked to find link after link with that phrase, including one that led to “symmetry rituals.” I looked at the url of one of the websites and inhaled a startled breath. It was a website for obsessive compulsive disorder, or OCD.
Next I found a checklist from the OCD Center of Los Angeles to ascertain whether your child might have it. The first five traits dealt with cleanliness, excessive hand washing due to fear of germs, and compulsive tidying. That wasn’t Quinn. But the sixth trait jumped off the page: “If my child does things on one side of his/her body, he/she often needs to do a similar action on the other side in order to make things “equal,” “even,” or “symmetrical.”
Could Quinn have OCD? I barely knew what OCD was but knew I’d be spending the rest of the day and many days to come finding out. I learned that OCD is anxiety related, often genetic, and, in children, can be triggered by trauma: parental divorce, bullying, the death of a loved one. My heart lurched. Death of a loved one. And to think I’d been relieved lately that Quinn’s nightly crying into his pillow had subsided. Lately, he’d started a new behaviour: every room he entered, he’d knock his elbow against all four walls, to make things even. Was it a chemical change in his brain looking for a new way to cope, searching to control the uncontrollable?
OCD is a neurobiological condition affecting three in every 100 people. The part of the brain that filters information isn’t functioning properly, causing certain thoughts to get stuck that should be forgotten. It’s as if the person is trapped by an unrelenting heckler or bully who throws out jabs of worry, fear and uncertainty.
Children have no idea what’s going on when they experience intrusive thoughts. The obsessions and compulsions can take over their waking hours. Compulsions are covert mental acts or behaviours performed repetitively to relieve or prevent anxiety generated by the obsession. They often have the intent of magically preventing some dreaded event. Quinn’s compulsions were to bring about something good, but by not doing them, his grandpa would never come back. From everything I’d read, the more you give in to the compulsions the more entrenched the neural pathways become. The more you feed it, the more it increases its unreasonable demands. OCD never gets enough.
Thankfully, because scientists have learned the brain isn’t unchangeable, but is malleable and “plastic” (the science of neuroplasticity), a revolution has taken place. OCD and conditions like it can be treated with cognitive behaviour therapy (CBT). Dr. Jeffrey Schwartz, author of Brain Lock: Free Yourself From Obsessive-Compulsive Behaviour, says there is scientific evidence that CBT alone causes chemical changes in the brains of people with OCD and by changing your behaviour, you free yourself from “Brain Lock,” and finally get relief.
There were brain exercises you could do. I ordered books on Amazon, such as What To Do When Your Brain Gets Stuck: A Kid’s Guide to Overcoming OCD; Talking Back to OCD; and Freeing Your Child from Obsessive Compulsive Disorder.
“Look, Mummy, I stopped!” Quinn had just returned from two weeks of summer camp. Standing in the open doorway, he touched his left cheek.“See?” He didn’t reach for the other cheek.
“I don’t need to even-off any more!” He threw himself at me for a long hug and I breathed in the campfire smell of his hair.
“That’s fantastic, Quinn! I’m so happy for you! I missed you!”
Rob had been right. I’d been worrying too much. I could put away all those books. Relief flowed through my veins—until the next morning when I tried lifting his backpack. “Quinn, this weighs more than you do.” I unleashed the straps and felt a catch in my chest. Rocks filled the pack. “I don’t get it. They’re just boring grey rocks. Can we throw them outside?”
“No!” Quinn launched himself onto the pack and gave me a fierce pleading look. “I collected them at camp. I’m never letting them go! I can’t!”
Wasn’t hoarding another OCD tendency? Also, he was wearing my dad’s watch again. He hadn’t taken it to camp, keeping it safe in a box he’d hidden in his bedroom. At breakfast he’d told me that when he’d been lonely at camp, he’d think of the watch and it made him feel less lonely. It reminded me of an autobiography I’d read years before: Memories, Dreams, Reflections by Swiss psychiatrist Carl Jung. When Jung was about Quinn’s age he’d carved a little man out of a wooden ruler. He gave this little “manikin” a bed and a coat, and placed the manikin in a pencil case. Jung wrote:
“Secretly I took the case to the forbidden attic at the top of the house . . . and hid it with great satisfaction on one of the beams under the roof . . . No one could discover my secret and destroy it. I felt safe, and the tormenting sense of being at odds with myself was gone. In all difficult situations, whenever I had done something wrong or my feelings had been hurt, or when my father’s irritability or my mother’s invalidism oppressed me, I thought of my carefully bedded-down and wrapped-up manikin . . .”
It made sense there was something comforting in secreting away a treasure, and that thinking of the hidden watch kept Quinn’s connection to his grandpa safe.
I thought things would pick up once he got into the school routine, but they didn’t. Every night at bedtime I was accompanied by a child I barely recognized. Instead of listening to my reading, he’d be on the edge of the bed, tense and fidgety, mumbling what sounded like incantations. Finally, I asked him what he was saying.
In a small faraway voice he explained. “When I was at camp I cried about Grandpa a lot, so the camp counsellors said I should talk to him.”
I swallowed, trying to keep my voice calm. “You’re talking to Grandpa?”
He nodded. “I ask him to come back.” A cold finger was laid on my insides. “If I say ‘come back’ ten times while I touch my watch I think he’ll really come.”
“And all the other stuff you do? That’s to bring Grandpa back?”
He turned to me, eyes wide, giving me a solemn nod.
“Oh sweetie, that’s just . . . magical thinking. People don’t come back from the dead, no matter how many times you touch your watch. You can talk to Grandpa and tell him you miss him and tell him about your day, but Grandpa isn’t coming back.”
He turned to cry against the wall.
“Quinn, listen,” I said, rubbing his back. “We’re going to figure this out. Those OCD books can help us. They have exercises we can do. To change the patterns in your brain. This isn’t you. It’s a hiccup in your brain. You won’t be stuck with this OCD bully in your head forever. I promise.”
Quinn looked at me, taking in my words, hanging on to them like a life raft. It felt like we were in for a long battle.
I visited our family doctor in Wakefield, who’d been very understanding and concerned, and we’d been entered into the Quebec health care system on an eight- to twelve-month waiting list to determine if he needed an OCD specialist. Then we’d be put on another waiting list to see that specialist.
We couldn’t wait two years. Our only option was the private route, expensive since we didn’t have private health care. I’d already contacted an Ottawa support group for parents of kids with OCD, where I learned the names of the area’s best private psychologists specializing in this. The earliest appointment was three months away.
I explained to Quinn that OCD was like a bully in his brain, but it only had power if Quinn gave it power, like the man behind the curtain in the Wizard of Oz. He was only powerful because people thought he was. Once in the car when he was chanting, “Please come back, I love you, please come back,” I told him to boss the bully back. “I’m trying,” Quinn said. Experts say fighting OCD would probably be the hardest thing a person could do in his lifetime. And to think Quinn was just a ten-year-old kid having to do this.
OCD floods its victims with invasive thoughts and behaviours guided by rules that can change daily. Something I’d noticed that Quinn had to do was leave a room by the exact route he’d entered it, sometimes even walking backwards. This in itself wasn’t any more peculiar than his other seemingly random baffling behaviours, but what I found intriguing was this new one, like the evening-off, seemed to be 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. I wondered what was happening in the inner workings of people’s brains. Did this evening-off, this need for symmetry, somehow go 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—what makes things compelling—that I found a possible answer. I was reading Riveted by cognitive scientist Jim Davies and came across a section where he discussed symmetry. He wrote that being able to detect patterns in the world 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, or wolves—are symmetrical. We’re programmed to be on alert for things being even.
Our brains are belief engines that have evolved to recognize patterns. For those with OCD, this primal tendency is in overdrive. It’s an adaptive behaviour—one that has kept our species alive—gone rogue. Stephen Whiteside, a psychologist at the Mayo Clinic, has said OCD activities in typical levels can be helpful. Davies, in Riveted, agrees, saying that OCD is probably the result of overactivity of mental processes that normally help us. Staying away from germs is good for us, for example.
By October, Quinn was in no condition to go to school. He couldn’t even read any more because he had to read the sentences backwards after reading them the first time, to erase them. Rob proposed he and Quinn spend the mornings doing their “exposure,” or ERP exercises.
I went to Quinn’s school to explain why he was absent. His young teacher’s eyes were full of concern. “I was going to tell you this so I’m glad you’re here now. Take a look.” He pulled out Quinn’s math workbook. Instead of numbers, tiny words were scrawled across the bottom of the pages, the ones we’d heard for weeks: “Please come back. I love you. Please come back.” I felt the room starting to spin.
Rob told me that night how hard it had been for him to find behaviours for Quinn to try delaying. The idea of ERP, the “gold standard” for treating OCD, is to expose yourself to your fears without performing the reassuring compulsions the fears bring on. You place yourself in a situation that exacerbates your anxiety. A child who fears germs makes herself touch a doorknob. After touching it for a set amount of time, the anxiety decreases and the child realizes nothing catastrophic happened. Just as neurologists have shown that every time you resist acting on your anger you’re rewiring your brain to be calmer, by exposing yourself to your anxiety you’re forming new cognitive pathways. Next time, the child can try touching the doorknob for longer, and eventually, the compulsion loses its appeal. The longer you’ve had OCD the longer this therapy takes, since the cognitive pathways have deep grooves.
Rob tried to get Quinn to say, “Grandpa isn’t coming back,” but even hearing Rob suggest this sent Quinn racing into his room to touch the picture of his Grandpa and loudly declare the opposite, as if this were the Middle Ages and Rob had uttered some kind of blasphemy.
For some reason that 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 chanted. Where did he get this? It made me think of Catholics making the sign of the cross and saying Hail Marys while counting rosary beads, all in the hopes of making something happen or warding off evil. Other religious rituals mimic OCD. Orthodox Brahmins have rules dictating the repetition of magic numbers, which foot to put down first getting out of bed, and how to enter and leave temples. Orthodox Jews engage in complex eating and cleansing rituals, have strict rules on entering and leaving holy places, and also recite special numbers. Muslims must enter and leave mosques and cleanse their bodies in specific ways. Not performing these rituals leaves both the religious participant and the OCD sufferer with a sense of dread, and if they aren’t performed “right” the person makes himself do them again.
Sometime during Quinn’s first missed week of school, he stopped talking in full sentences. He was sitting beside me on the couch one morning mumbling to himself. My iPad lay on the coffee table and I suddenly thought playing Minecraft would restore some of his former joy. “Hey, Quinn, Earth to Quinn! Do you want to play Minecraft?” He didn’t look at me when he answered.
“Can’t, can’t. Too hard now. Now hard too.”
I blinked. “What?”
Staring out the window, he said, “Have to erase everything. Everything erase to have.”
“Are you talking backwards?”
“I’m erasing. Erasing I’m.”
“Jesus Christ. Why are you doing that, Quinn?”
He kept staring out the window at a red squirrel running the length of our railing on the deck. “Have to. To have.”
“You’re erasing your words? And that’s why you don’t play Minecraft anymore? You’d have to erase what you created?”
He nodded, then turned to look right at me in alarm, like he had no idea why any of this was happening to him, like he was lost in a deep tangled forest and he wanted me to help him find his way out.
But how to find my way in?
This article has been excerpted and condensed from Stolen Child. The book, which reveals many more twists and turns in Laurie Gough’s journey with her family to try to rid Quinn of OCD, will be published by Dundurn in September, 2016.