Parenting A Child With OCD
“Is this good to eat?”
I had just handed my 6 year old her peanut butter and jelly sandwich.
“Yes, it’s good to eat,” I replied back, as I had done a hundred times.
Occasionally I’d say something like “You just saw me make this, why would it be bad?” She would then repeat her same question, “Is this good to eat?” I’d sigh and say “Yes, it’s good.”
We had recently moved into a new house. It was a minor move; she was in the same school district and only about 15 minutes away from our old home.
At the time I thought kids were weird and it was only an odd thing she did. She is the youngest of my three daughters. I had been a parent for almost 18 years by this point. Kids are weird, they do odd things, and they grow out of or move on from most of their odd behaviors.
This lasted for about six months and I got use to saying “Yes, it’s good” after everything I gave her to eat or drink. In all honesty, I didn’t think much of it at the time.
Next came the dry, cracked, and bleeding hands. I thought she was allergic to the hand sanitizer they had the kids using at school. I decided to give the teacher some hippie natural soap that she could use instead of the hand sanitizer. Her hands didn’t get better. Still, I didn’t think anything was going on with her.
Slowly, I noticed her bedtime routines were getting to a very odd place. She would roll her head a certain number of times and do a weird stutter of words she repeated to us over and over, that we had to repeat back in exactly the same way.
She was also flooding our bathroom every night. It got to the point that we would eventually have to replace the floor and sub-floor.
This was when she was around 9 years old. I knew something was going on but these are not behaviors anyone talks about. I knew she was not on the autism spectrum. I knew she had no other problems or issues. She was and is a sweet child, causing no drama during her childhood. She was happy and well-liked in school, by teachers and peers.
Most people, myself included at the time, think Obsessive Compulsive Disorder is lining up your colored pens in a rainbow pattern or fixing a crooked picture on the wall. These days, if I feel like it, I tell people it’s only OCD if you think someone is going to die or something catastrophic will happen if that picture isn’t righted to perfection. If you only “like” it that way, you’re anal retentive, or at worst if it interferes with your life, you have OCPD, which is a personality disorder, not OCD.
Read more about the differences between Obsessive Compulsive Personality Disorder (OCPD) and Obsessive Compulsive Disorder (OCD) here: https://iocdf.org/wp-content/uploads/2014/10/OCPD-Fact-Sheet.pdf
If I see a meme or hear someone talking about their “OCD”, I only say this about a quarter of the time though. Mostly because either I don’t feel like dealing with the education surrounding OCD that day or I don’t want to deal with them being shocked that they don’t have OCD. I always feel slightly like an asshole because I’ve never figured out a nice way to tell someone they are anal retentive.
One night, during this time period, she had done the entire routine of head rolling, hopping, counting and stuttering words. She decided she had to start from the beginning, at this point we were up to at least 20 minutes of this routine before she would lie down to sleep.
Annoyed, my husband said “No, get into bed, you’re done.”
She cried, “I missed something. I’m scared if I don’t do it again something bad will happen.”
Finally, I realized we needed help from a doctor.
It was embarrassing to finally bring her into these early appointments. First her pediatrician, then psychiatrists and therapists. Telling all of them this same story. What kind of mother lets their child get to this point? I feel like I’ve repeated it at least 50 times over the last six years and it never fails to make me cringe inside.
At the psychiatrist’s office, when I was filling out the parent questionnaire for the diagnosis of OCD, I saw one of the questions: “Fear of food or drink contamination”. Sitting in that office was the first time I realized that all those years ago, this was the first noticeable sign and I had missed it.
She’s 15 years old now and says she does not remember a time living without OCD. Some of her first memories were having to blink at the curtains a certain number of times before she could close her eyes to sleep.
I have read that genetics contribute to as high as 45–65% to the risk of developing child onset OCD. My maternal grandmother almost surely had OCD. She’s been gone for almost 20 years but even as a child I knew something was wrong. Thinking is she serious, we are going back to the house to check if the stove is off? It was never on, the door was always locked, but still we had to go back. It felt like a supreme waste of time but you accept things as a child, you never think to truly question anything the adults around you decide is important.
Interestingly, she looks a lot like my maternal grandmother. She is her exact height, same body shape, and she is extremely witty, just like my grandmother. DNA is a trip.
Our first stop was an art based play therapist. I had no idea, at the time, that traditional talk therapy causes OCD to get worse. After diagnosis and at the beginning of this therapy, things went downhill quickly. She became almost housebound and despite a long list of concessions from the school about attendance and breaks during the day, it came to the point that she needed to be enrolled in medical homebound education through the school district. We were incredibly lucky to live in a school district who truly only wanted the best for our daughter.
At this point we had upgraded her therapy and she was receiving two 1 1/2 hour therapy sessions a week in our home and another hour of therapy a week in the office. Add in psychiatry appointments for her medications and it’s not an exaggeration to say it overtook our lives.
It was a long road but with therapy and medication, it did get better. It’s never gotten to the point it was when we started. I am pro-active about her medications and therapy if things start to become worse again. There is no goal line to cross, no finish line, only management.
She went back to school starting in the 8th grade, missing two years due to OCD, and started traditional high school this fall.
I wish I could share a magical formula with you to overcome severe OCD. The gold standard is exposure and response prevention (ERP) therapy, along with medications. The reality is she will probably need to be on medication the rest of her life, considering her severity and age of onset.
As a mother, I hope they can come to learn more about OCD and why it manifests, finding a cure in her lifetime. There are many exciting studies going on surrounding genes and psychiatric conditions, especially psychiatric conditions they believe to be gene based.
I am hopeful.
If you would like to read further about OCD and child onset OCD, I suggest the International OCD Foundation: https://kids.iocdf.org
