There’s my eleven-year-old son walking down the sidewalk. He has a bounce to his gait, a little shuffle, taking an extra small step when he comes to a stoplight, almost like a dance. You could assume he’s in a jolly mood, an uplifting song in his head, that he’s carefree. And you would be wrong.
Inside his head, a mob of numbers, a riot of rules. The shuffling, extra steps and adjustments to his strides are to make sure he never stops on a bad number—and there are a lot of bad numbers.
M must start his steps with his right foot. His birthdate dictated an allegiance to threes, but after a few weeks the number three became toxic. Soon after, so did all multiples of three. He also avoids the numbers five, seven, ten and twenty-four. Eleven is allowed. As often as he can, he aims to end his movements—including steps, blinks, things he touches, and hand movements—on the numbers sixteen, twenty-eight, and thirty-two. All multiples of four are good except twelve. He takes his steps from the living room to his bedroom in twos, because they end on the number sixteen. He knows it’s eight steps from the kitchen counter to the cabinets and eight back to his seat. He tries to avoid any number in the thirties, except thirty-two.
What happens if he hits a bad number? He’s imagined a series of consequences that might sound silly to you or me, but feel like a life-threatening crisis to him. One of the most frightening is that he’d be forced out of his body to live someone else’s life.
For almost two years, he gave his counting cultish obedience. It was loud and authoritative in his brain, shouting at him all day, force-feeding him a diet of numbers, anxiety, and fear. Surely as his mother I should have known. My bionic mother hearing should have heard the noise in his head. But for eighteen months, I didn’t hear or sense a thing.
In the spring of 2015, my husband and I learned our oldest son M was diagnosed with Obsessive Compulsive Disorder (OCD). Not, “Ha, ha. My son really likes his Legos organized, he’s so OCD about it.” No. My son has the full-blown, DSM-5 version, the kind where he can’t make it through the day without following the numerical rules his brain has adopted as strict dogma. I used to make OCD jokes, especially when it came to allowing my two boys to fold their own laundry or stack the dishes in the dishwasher. But OCD isn’t funny. It’s pernicious, an indefatigable authoritarian regime ruling relentlessly from the frontal lobe, calling out its orders on the minute.
There are many forms of OCD, I’ve learned, some more obvious than others. You can see when your child is under the influence of OCD, forcing obsessive orderliness or washing. You notice your child checking the front door or turning on and off the faucets. You can hear your child continuously praying or begging forgiveness or asking obsessive questions about his or her safety or the probability of natural disasters. You can see a bedroom crowded with papers, clothes, and toys when your child is hoarding.
But the counting is silent. It started around his tenth birthday, which is the average age that OCD begins for children. He was watching television in our den. He made a humming sound while watching a movie and then dared himself—could he make five humming sounds every time the movie switched scenes? He did. He savored a small sense of accomplishment. What else could he do? He tried flaring his nostrils between scenes, and when that got too intrusive, he switched to blinking, counting every time he blinked. Soon he was counting every movement his body made, making sure the left and right sides of his body ended on his good numbers. There were more rules, different tests. He’d watch clocks, forcing himself not to blink until the minute passed.
There are also tics. During my pregnancy with M, I felt his movements by fourteen weeks, which my OB dismissed as ridiculous. But several times a day there it was, a sensation of little bubbles popping, like a startled goldfish swishing through my amniotic fluid. He kicked and twisted with such aggression and frequency that when I became pregnant with my second son and I didn’t feel movement for longer than an hour I prodded my belly to wake him up and make sure he was still alive.
As an infant, M was alert and wide-eyed, a delight in every way except his resistance to naps and bedtime. Every night my husband and I traded shifts trying to get M to fall into a deep enough sleep for it to take. We paced the nursery in the small dark hours, rocking and bouncing, shaking and shushing like human maracas. During the day I’d find myself on my knees next to his crib as he cried, praying both that he’d fall asleep, that I was doing the right thing.
His aversion to being still at bedtime was mirrored during the day in his restlessness. While not into sports, he had a continuous case of the schpilkes, which is Yiddish for nervous energy, an inability to be still. He developed repetitive behaviors—a clompy walk, for instance, where every third step is extra floppy. He’d adopt a certain behavior and fixate on it for several months, only to replace it with a new one. Every phase required new exercises in extreme patience. Grinding teeth. Spinning. Rocking back and forth. Finger snapping. Clucking. Shouting out the hashtags in the lower right-hand corner of the television. Swishing saliva sounds. Loud, rhythmic breathing patterns. Once in the movie theater during The Fantastic Mr. Fox, I had to move several seats away from him because the breathy sounds were making me mental.
I’d get aggravated, I’d snap at him, I’d bribe him to stop. I’d confine him to his bed. I did whatever you aren’t supposed to do for a kid with Tourette’s. There was no diagnosis more further from my mind than Tourette’s, especially since M’s school was filling our head with suggestions of another condition entirely.
The first time a teacher talked to us about the possibility of attention deficit disorder was in first grade. Just watch out for it, she said, based on her observation of his schpilkes. His second- and third-grade teachers didn’t mention anything, but in fourth grade his teacher and the school counselor besieged us with cries of ADHD. His teacher also suggested M take drugs for this condition, which he wasn’t qualified to diagnose, of course, telling us just how well those medications worked for boys like M.
I didn’t agree with them, and every time I Googled or filled out the ADHD evaluation forms or got a new email from a teacher or spoke to the school counselor, I tried to reconcile whether they were right and I was in denial. M had social issues with other kids in the school as well, being an off-center boy who loved drama and comedy in a class heavily populated with boys who loved lacrosse and video games like Madden Mobile. He struggled with friendships, with where to sit at lunch, with seeing pictures of his classmates hanging out together on social media. My husband and I started looking at different schools for him for his sixth grade year.
During a meeting with the school principal in the middle of his fifth grade year, the principal suggested we have M undergo a full neuropsychological examination to pinpoint the issues with M’s brain functioning. We took M for the exam in the late spring of 2015. It’s expensive and time-consuming, but without it and the astute staff who performed it, we would have never discovered M’s OCD and wouldn’t have gotten a referral for his Tourette’s diagnosis.
In the classroom, a preoccupation with obsessive thoughts can look a lot like distraction and ADHD. There are plenty of families without resources to get accurate diagnoses for their kids or pay for the psychological and medical care they need. If we weren’t as fortunate as we are, maybe we would have believed the teachers and the counselor at M’s school. Maybe we would have taken him to a doctor who would have prescribed medication for ADHD, a class of drugs that would have been toxic to his actual condition. Maybe he would have gotten worse.
Instead, my husband and I sat on a sunken, burgundy sofa surrounded by off-white walls while we listened to M’s diagnosis, words flying at me like tennis balls. Compulsive counting. Blinking. Repetitive. Two years. Disinhibited tics. Medical intervention. Yes, Tourette’s.
The report detailed M’s thoughts about himself. “I think of things that are too bad to talk about. Other kids make fun of me. I worry a lot. I don’t know what I’m supposed to do.” I leaned forward in my seat, trying not to act as stunned as I felt, because what kind of mother wouldn’t notice her own son’s sudden servitude to numerical rules governing his every move? How could I, especially with my history of battling depression from adolescence, not know what was going on inside his brain? The doctor explained how to support M, the best specialist for his OCD, the top neurologist for his Tourette’s, what books to read.
Later that night as I blamed myself and my husband told me not to blame myself, I couldn’t help thinking of the decisions I made while parenting M—every ill-conceived time out or privilege I withheld when I couldn’t take his spinning or slurping or saliva swishing, every time he wailed in his crib begging to be held as I waited for him to exhaust himself so I could finally sleep. I must be partially responsible for seeding his brain with anxiety and, coupled with my history of depression, passing down the essential ingredients that finally distilled into my son’s OCD.
I don’t know what it was like for M during the year-and-a-half he obeyed his OCD but told no one. What was it like for him to orbit the playground while his classmates played because he couldn’t join them until he ended his steps on a good number? How many times did he pretend to tie a shoe or purposely drop a pencil so he could avoid his bad numbers? How hard was it to pay attention in class because he was counting the taps of his foot or fingers, timing his blinks with the secondhand on the clock? How did he absorb my scolding during dinner when I berated him for moving around so much, chewing so slowly, spinning as he took his plates to the dishwasher? How did he keep track of all his rules, hold on to this ever-multiplying secret?
Right after his diagnosis we arranged for his cognitive behavioral therapy, but since we hadn’t heard from M himself about his experience with OCD, we still didn’t understand just how all-consuming it was. I found out when we were walking down to the subway, and he took several steps at once. I had visions of him tumbling down the stairs, cracking his head open on the concrete. Without thinking, I snapped at him for being unsafe. “What’s wrong with you?”
It was the wrong question to ask the boy who knows something is very wrong with him. Under the weight of the numbers, the pressure of his rules, the tone of my scold, the pace of our day, my son broke. On the subway platform I held him as he finally confessed his secret counting brain cult and the subsequent exhaustion from the effort of obeying his OCD.
“I have so many rules and I don’t even know how I keep track of it all,” he cried as commuters walked around us, some stealing glances as they passed.
I explained the diagnosis to M and told him how the therapy worked, how successful it could be. I told him we were going to help him. And as the train pulled away from the platform and filled our ears with its whine, he hugged me and released two years’ worth of his free will from its solitary confinement, and I shook with guilt for all that I hadn’t done for him.
Cue purchase of multiple books on OCD, the most helpful being Freeing Your Child from Obsessive Compulsive Disorder by Tamar Chansky. I learned that the most effective way to overcome OCD is with cognitive behavioral therapy. You treat it the way you might treat a spoiled child throwing a tantrum. If a toddler was in your head, stomping his feet and shouting out for you to tap your left foot eight times so you could end on a sixteen or else, you wouldn’t listen. Which is exactly how you’re supposed to handle the directives of your OCD. When OCD gives an order, you tell OCD you aren’t listening. This is harder than it sounds. M described it as having someone yelling in your ear while trying not to hear. The compulsion to comply is overwhelming, and not doing what OCD says is as unbearable as having cockroaches circumnavigating your body without the power to brush them off and run. To overcome OCD you have to endure the cockroach feeling until it goes away. The more you ignore and refuse OCD, the less cockroachy you feel and the quieter the OCD becomes.
For the summer and fall of 2015, I took M to cognitive behavioral therapy every week. We also saw a neurologist at Children’s Hospital for the Tourette’s and started him on Zoloft.
One technique he used was to name and personify his OCD. M called his OCD “Boris,” and I imagined Boris as a hulking militant creature, his arboreal legs in lockstep with M all day. I pictured him sitting next to M in class, eyeing M while he ate, standing over M’s bed at night. Boris, his mouth stretching open, numbers crowding on his tongue, the air steaming with his breath. M had to turn this grotesque force into a whispering cotton ball.
I often wonder about the soft life my two sons lead and whether or not they have the fortitude to deal with challenges heftier than not knowing the wifi password or emptying a dishwasher when they’re not in the mood or whether their ice water is too cold. But then I got to watch M fight his OCD.
He was afraid to walk, worried that every step would embolden Boris, send numbers flooding back into his brain. When he moved, he muscled up his brain to think of anything besides counting. He’d focus on his breathing or a song he liked or anything in his field of vision—a spot on the sidewalk, the clothes in a storefront window, a lamp in our living room.
As parents, my husband and I had to help him learn he really did have the power to refocus and not get sucked down into his anxiety. When he called me from a birthday party in the late summer, his voice shaky with fear because the games his friends were playing involved so much running, I couldn’t spend a lot of time with him on the phone calming him down or give in to his requests to bring him home. I gave him simple instructions, told him to remember his tools for combating Boris, hung up, and then felt so much like my younger self on my knees in front of his crib as he wailed, looking to the sky and praying I was doing the right thing.
M is now thirteen and in the seventh grade at a new school with a music specialty. He is out of therapy and still on medication, which he resists taking and requires daily nagging. He no longer counts. But Boris still waits in M’s brain, biding his time, head resting in his palm, dangling his atrophied legs, hoping for a spike in stress during school so he can gamely try to make M count how many times he’s blinking.
M knows how to concentrate completely on something else until Boris skulks away. He’s done so well that it’s been months since I asked him if he’s counted. He’s thriving in his new school and he spends weekends with friends instead of watching them on social media.
He will most likely always have his tics. He will bend his knuckles one by one until he hears a satisfying pop. He continues to spin around the dining room table en route to the snack cabinet.
Some nights I’ll be on the sofa with M and my husband and younger son watching TV. M will be under a blanket, wriggling. He’ll get up from his spot next to me, sit back down, rock back and forth. He’ll stand up and turn around so his back is to the television, get down on his knees and push his head into the sofa cushion. He’ll repeat the first three motions, then walk around the sofa to the left hand side, spin, kneel, and push his head into the cushion again. He’ll lift his head and flop his body down. He’ll flap his hands. He’ll groan.
My patience depletes over the course of the day and on some evenings these machinations get to me, making me want to pop out of my skin like a jack in the box. Instead, I reach out to him and pull him back on the sofa, hoping some gentle soothing will calm whatever is flying around inside him like a canary.
“Come here, love. Come and sit quietly next to me.”
Jennifer Raphael is a freelance copywriter, journalist, and former staff writer for Philadelphia Magazine. Her writing has appeared in Mademoiselle, Good Housekeeping, Marie Claire, Cosmopolitan, Men’s Health, and Glamour. She won a Keystone Press Award for her coverage of The Barnes Foundation, and her essay, “My Bubbe, Myself,” won an honorable mention in Best American Essays. Her parenting blog, “Mother Words,” appeared in Jewish Exponent. She recently completed her first novel.