A recent experience with my 2-year-old son gave me pause. One evening, after returning him to his room for the tenth time so he could get to sleep, I watched him walk onto his floor mat, take a short step to his left, and then gently step on each of the grey arrows that make up the mat’s pattern. When he reached the last arrow, he stopped.
I held my breath and waited to see if he would return to the front of the mat and walk down the line of arrows again. That is what I would have likely done as a child. But, to my relief, he turned left and launched himself into bed. I let out a shallow breath.
Alone in the living room, I took a moment to acknowledge my son’s actions. I thought about his steps but tried not to obsess over them. I was proud of myself for letting some thoughts flutter through. Still, I wondered – and worried – about what my son might do when he stepped onto his floor mat the next evening. I also reflected on my 25-year struggle with obsessive-compulsive disorder (OCD).
The OCD Rituals That Haunt Me to This Day
My compulsions started around age 9, when I would check for monsters or ghosts behind doors and curtains as part of my bedtime routine. Unlike other children, who are satisfied with one or two checks, I’d check until I reached numbers like 34 or 52. That is when I finally felt safe enough to sleep.
My compulsions intensified in middle school. The bedtime ritual started in the kitchen, where, after saying goodnight to my parents, I would walk carefully to ensure that my big toe didn’t cross the lines of the floor’s individual wood planks. At the same time, I would drag my index and middle finger across the counter, refrigerator, and wall while thinking of good numbers or positive images.
When I reached the stairs, OCD compelled me to move my feet onto and off of the first step until I had counted to a good number, which, back then, were in the 90s. Only then was I allowed to proceed. If a bad image came into my head, or if I thought of a bad number, I would have no choice but to tiptoe back to the bottom of the stairs and start all over.
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I eventually made my way to the bathroom. But further removed from my parents’ eyes and ears, my compulsions multiplied. I moved myself into and out of view of the bathroom mirror, making sure to exit the mirror’s view with my right shoulder when I reached 100. To exit the bathroom, I would step in and out the doorway, also until I reached a good number. On the way to my bedroom, I would drag my fingers across the wall while making grunting noises.
The right side of my body had to enter my bedroom first. I then needed to flick the light switch on and off dozens of times. At the same time, I would move my feet back and forth in coordinated movements, shrug and relax my shoulders, and twist my neck to the right and left – always making sure to end a movement on a good number.
Depending on the power of my obsessions on a given evening, I might play with my reflection in a picture frame, draw invisible lines across my bookshelf (and make sure that the lines always entered and exited the bookshelf at good spots), or move my feet in numbered sequences.
Bad thoughts and horrible images would inevitably pop into my head when I tried to get to bed. It might be of my mom dying or of me breaking a leg or becoming paralyzed. To save my mom, or my body, I returned to the light switch and flicked it on and off until I reached a number that would cancel out the bad thoughts and images.
[Read: When OCD and ADHD Coexist]
When I made it under the covers, my OCD would curl up next to me and whisper that if I didn’t get up and go through the entire sequence again, from the bottom of the stairs, my mother was definitely going to die, I would lose all my friends at school, or I might break a bone. So, I would get out of bed and start the whole sequence again until I reached a number that felt right.
Unable to Ask for Help
I knew the thoughts in my head and the things I did with my body were unusual, but fear kept me from seeking answers and finding help for many, many years. As a college freshman, I remember hiding in one of the aisles of the campus’ bookstore with a medical reference book, nervous that someone I knew might see me. I found a section on anxiety disorders, read the first few paragraphs, and promptly closed the book. I did not want to confirm what I already knew. With a scientific name, my once unusual movements and thoughts suddenly became frightening.
I learned more about OCD throughout my 20s, as I taught high school while studying to become a special education teacher. I wrote papers on OCD, taught students with learning disabilities (some of whom also had OCD), and attended the annual International OCD Foundation conference. Still, I couldn’t bring myself to seek help.
My own struggles with OCD seemed to intensify each day. I struggled to keep up with the demands of teaching. Grading papers was an endless endeavor of rereading words and sentences, turning pages over dozens of times, and rewriting comments on the bottom of essays. My struggles continued outside of teaching, too. Compulsions often interfered with my morning routine, as it sometimes took several tries to put my clothes on to satisfaction. I struggled to date because I feared letting someone get close enough to witness my compulsive behavior, especially my bedtime rituals.
Confronting My OCD
Finally, at age 30, I mustered the courage to get help for my OCD. I called a family friend who was a psychiatrist and spent hours divulging my deepest secret and asking for advice. Soon after, I formally met with an OCD specialist. I learned that my symptoms likely developed following a strep infection in childhood — a condition known as pediatric autoimmune neuropsychiatric disorder associated with streptococcus (PANDAS).
I was to start on Lexapro and exposure and response prevention therapy (ERP) to manage OCD. The therapy approach seemed impossible at first. I had to confront my obsessive, distressing thoughts head on and avoid responding to them with a compulsive behavior to break out of the obsessive-compulsive cycles that had consumed my life.
It was difficult at first, as I had feared, but my obsessions and compulsions did wane over time. To this day, I continue to take medication and practice ERP when certain obsessions linger. My OCD sits nearby most every day, but I am the one in control now.
What Would It Mean If My Son Had OCD?
Every so often, my son lines himself up to the edge of his mat and steps on its grey arrows. I try not to look into his behaviors too much, but the questions still trickle through: Is it a harmless, budding routine, or the start of something serious? One night, as he reached the middle of the mat, he mumbled something about the floor. I figured he had messed up his routine and was going to return to the front of the mat. Instead, and to my relief, he jumped into bed.
I know there is no definite way to prevent my child from developing OCD. But if it happens, I take comfort in knowing that I’m well equipped to help him. I know to watch for signs of behaviors that interfere with my son’s day-to-day life. I know the factors that can worsen symptoms. I know that early recognition and treatment help tremendously.
As a parent, my focus is on building a trusting relationship with my son. I want him to know that he can be open with me about all aspects of his life. I lived a secret life for many years because of fear and shame. It’s my hope that my son won’t have to endure a similar ordeal.
Signs of OCD in Childhood: Next Steps
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