Parenting is challenging with daily ups and downs testing our patience and understanding. It can be especially challenging when a child has Obsessive-Compulsive Disorder (OCD). OCD can affect people of all ages, including young children. The symptoms of OCD in children are similar to those in adults. They include obsessions or intrusive/unwanted thoughts and compulsions or repetitive behaviors/rituals in response to the obsessions. About half a million children in the U.S. have OCD. While it can start at any age, it most often emerges in late childhood or adolescents. Cognitive-behavioral therapy (CBT), particularly a type called exposure and response prevention (ERP), is considered the most effective psychotherapeutic treatment for OCD in children. Here is a story of how one mother, with the help of Dr. Muniya Khanna, began treating her daughter’s OCD with CBT w/ERP from the early age of 4.
My Daughter’s OCD Journey
In the summer of 2018, there were 23 pairs of unworn shorts folded neatly in my 3 year-old daughter’s dresser drawer. Some she complained were too tight, others too loose, and some just didn’t feel right. It was a long summer of buying and returning shorts, which ended with the purchase of multiple pairs of the same rainbow colored stretch shorts from Target. Little did we know this was the beginning of our fight with Obsessive-Compulsive Disorder.
Fast forward one year to the summer of 2019. As Jenny’s school year came to a close, I began noticing some unusual behaviors. It started with repetitive questions in which she would ask permission to do everyday things, and transformed into checking whether or not certain things would, or could, hurt her. My “Mommy Alarm” continued to ring as I noticed “bad” words had entered her vocabulary and were being used excessively through out the day. After that came the constant questions about death- which included everything from our recently deceased fish, to heaven, to ranking family members in age order to figure out who would potentially die first.
What happened next is still a whirlwind in my mind. Things became so out of control that I felt like I didn’t know my daughter anymore. My silly, energetic, fun-loving little 4 year-old was changing before my eyes, and I didn’t understand why. She didn’t want to go to school or swimming lessons. There were a lot of tears, and I remember her sobbing as she told me that she talked during naptime at school, and needed to “tell on herself” the next day. She was a shell of who she used to be, as she sat at the kitchen table, coloring quietly and not talking to anyone. No hellos. No goodbyes. No smiles. No Jenny.
Our typical conversations about school, toys, family, and friends turned into a series of what if questions:
What if I call someone “weird”? What if I think someone looks old? What if I think someone is ugly? What if I hurt someone? What if I hurt mommy? What if I hurt the baby? What if I kill her? What if I kill myself?…
I thought nothing could get worse than those last questions. But actually, the next one broke my heart into pieces:
Mommy, why do I feel different? Why don’t I don’t feel like I used to feel?
The truth was, I had no idea because I didn’t know what was happening. All I knew was we had to help her and bring our Jenny back – immediately.
After many pediatrician visits and discussions with professionals in the field, we met with a child psychologist and we had our first diagnosis: Obsessive-Compulsive Disorder (or OCD for short). We were confused at first, having what we now know was a very superficial understanding of OCD. Ready to tackle this as a family, we awaited our first appointment with Dr. Muniya Khanna.
During this time, I took it upon myself to become an expert in the matter. I purchased a stack of books about OCD and read them all. The more I read the more I learned, and the more I learned the more obvious it was that Jenny was suffering from this as far back as the summer of 2018, if not earlier. As I read, I had another “a-ha moment.” I have this, too! Memories of fears and behaviors I had as a child came flooding into my mind. How had no one ever realized this?
This new realization led me to initially blame myself for Jenny’s current crisis. Did I do this to her? Did I make her feel scared to do anything without permission? Did I plant worries in her mind like the ones I have? Did I talk too much about my own fears of dogs, ticks, germs, sharing drinks, sunburns or getting hurt? Did I too often tell her it wasn’t nice to say certain words? Did I unnecessarily keep reminding her not to hurt the baby that now she’s convinced herself she will? So many questions needed answering.
Our consultation meeting with Dr. Khanna was enlightening. She explained the nature of Jenny’s OCD, and how her asking questions was part of her rituals that had to do with needing to check and receive reassurance every time a worry or fear “popped” into her mind. She explained how her brain was making her check everything repeatedly, and that the more we reassured her, the more her brain wanted to continue this behavior- like a drug. She explained how and why Cognitive Behavioral Therapy with Exposure and Response Prevention (CBT with EXRP for short) worked, and why starting this now could retrain Jenny’s young brain to cut off these obsessive thoughts. She also explained that OCD may be more likely in families where there is anxiety or related conditions, but while I didn’t cause Jenny to have OCD, I needed to try to curb my own behaviors as to not reinforce Jenny’s fears. I sat there, amazed by the power of the human brain, and for the first time truly understanding Obsessive-Compulsive Disorder, what was happening to my daughter, and what I had been suffering from for longer than I can remember. From day one, I knew I would benefit from some CBT myself, but right now this was about Jenny.
The next few weeks were filled with therapy appointments for Jenny, and daily practices to fight hiccup- that’s what we call her OCD thoughts. From Jenny’s first meeting with Dr. Khanna we saw improvement. She was excited to learn there was a “Hiccup Doctor” who knew how to make these feelings go away, and could help her feel like herself again. That’s not to say this time was easy. It seemed that as we successfully fought one obsession, another one would pop up. Each week it seemed like it would morph into something new. We learned that it “shifted” sometimes but stayed the same at the core, and so we kept fighting!
Each “exposure” was a practice when she would “do the opposite” or “challenge” her worry with approaching it instead of avoiding it. For example, she had a worry (the “o” or “obsession” part of OCD) that she may inadvertently hurt someone’s feelings by calling them “WEIRD.” So, as an “exposure,” we overused the word “weird” in practice situations that made her feel uneasy until her body became almost “bored” of it. She practiced wearing uncomfortable clothing, which taught her that she could get used to anything she wore. One week we didn’t allow her to use words like “please” and “thank you,” which taught her that she knew she was a good person even if she wasn’t polite. When she asked her what if questions, we replied with, “That sounds like a hiccup,” to help her remember to ignore it, or simply ignored her and she knew that we all were working on not “feeding” hiccup, and before long, those questions stopped.
As time went on, these original hiccups faded and fewer new ones arose. Jenny became able to implement these practices and strategies on her own. She came home from school with success stories of how she fought hiccup and stopped herself from checking with her teacher, or even her friends I watched my little girl come back to us, and if possible, she was better than ever. She appeared more confident, happier and freer than before.
My own OCD Journey
Watching my daughter fight this at 5 years old gave me such hope, but also made me jealous. I was jealous watching her break free from this, knowing that I was falling deeper and deeper down the hole. I originally thought by coaching her through this process that I could be my own therapist, but instead I found myself on a downward spiral of OCD and anxiety.
In the year my daughter beat this, I spent my time endlessly Googling medical conditions I was sure my children or I had. I scheduled more doctors’ appointments than I care to admit. I spent hours texting friends about medical issues just to hear them reassure me that we weren’t dying (there’s that reassurance drug again). I found every excuse in the book to postpone date nights with my husband, girls’ nights with my friends, or a trip to the city because I didn’t want to increase the chance of being in a car accident or involved in some sort of attack. I developed routines for eating in restaurants, touching shopping carts, staying in hotels and using public bathrooms, so that I didn’t feel overwhelmed by the germs with which my children or I may come in contact. I avoided bringing my children to outdoor events because the threat of ticks, and the fear of the chemicals in bug spray equally scared me. I became obsessed with breaking news and the state of the world, and planned ways in which I could save my family from the hypothetical World War III. I equated every major, or minor event with death, and the need to single-handedly protect my family from any potential threat, germ, accident or medical issue that could cross their path.
Finally, I realized enough was enough. I didn’t skip a beat in getting help for my daughter, so why did I put myself on the back burner. I needed to do this to insure my behaviors didn’t negatively impact Jenny, but I also needed to do this for me. In performing all of these rituals that I believed were protecting everyone, I became a wife, mother and person I didn’t want to be.
I contacted Dr. Khanna asking for advice. During my first official appointment, I learned more about myself than I had ever known. My unrealistic childhood anxieties, and current ritualistic behaviors suddenly made sense. I went right into practice mode, exposing myself to the things that frightened me the most. I fought the urge to Google medical questions. I didn’t strip the bed in the hotel in search of bed bugs. I didn’t disinfect the shopping cart before putting the baby in it. In practicing these things, I also realized how much I needed to perform these rituals. I used to think I did these things by choice, but now, I saw how uncomfortable, and sometimes upset and angry, it made me to not do these routines. It made my heart pound to put my two year old in the top of a shopping cart without wiping it down first. The image of the germs traveling from the cart to her hands, and eventually into her mouth made me cringe. I wasn’t scared of the common cold. I imagined the worst, most life threatening diseases invading her little body by way of shopping cart. But at that moment, I fought the hiccup in my head, and put her in that cart. Guess what? She was fine! She was so fine that after a few weeks of this, I even went so far as to leave my to-go pack of Clorox wipes home. For me, this was a huge accomplishment.
This was only the beginning. I finally left my girls and went away for a weekend with my husband, and then another with my girlfriends. I ran barefoot through grass with my daughters, and later that night we all shared a milkshake- from the same straw! I stopped making doctors appointments at the first sign of a problem and was pleasantly surprised when most just resolved on their own. I stopped being a slave to my phone, which brought so much anxiety through social media, news channels and incessant texting. In some ways, I felt like a new person. I was happier, more focused, and using my time for more important things. This version of me had been hiding away for a long time.
Throughout this process I built a toolkit of strategies to identify these OCD thoughts and anxious tendencies. I recognize now that not everyone feels or acts in these ways, and I’ve come to learn that it’s not because I care more about my children that I do these things, but it’s because I care about my children so much that I needed to stop doing them. I have learned to manage my anxiety and stop OCD in its tracks. I literally use the same tools as my five year-old, and find success in reminding myself that this is just a hiccup trying to get my attention. Of course, I know that this is an ongoing process. I’m not cured, but I am living the life I choose. Not the one OCD and anxiety were choosing for me.
That year certainly took us on a journey I had never anticipated. It was one that came on without warning, but managed to make us stronger as individuals, and as a family. While I feel like we have a happy ending to our OCD story, I know that this isn’t really the end. I know that there will be good and bad days, weeks and even months or years. There will be days when we beat OCD and days when OCD beats us. I know that OCD will go into hiding when we are strong, and attack when we have a moment of weakness. But more so than all of that, I know that both Jenny and I have the tools to beat this time and time again. And I am confident that together, we will.