Not long after the massacre at Sandy Hook Elementary School, I was listening to the lunatic press conference put on by the National Rifle Association.
My 8-year-old daughter happened to be home that day and she passed the room where I was watching TV just as Wayne LaPierre made the insane suggestion that, in order to thwart future killings, the U.S. needed to create a national registry of people with mental illnesses.
My child ran into the room and grabbed me hard around the waist.
“Mom,” she whispered. “He’s talking about me. I need to be on that list, because of my OCD.”
“Never,” I whispered back. “I won’t ever let that happen.”
Seven months earlier, my daughter had suddenly started having terrifying intrusive thoughts. She was convinced she had harmed people, that she hated us, that she was a bad, bad girl. And then, one afternoon bright summer afternoon, my then 7-year-old came into my kitchen with tears in her eyes and confessed that she was poking herself with push pins because she hated herself.
My daughter was experiencing sudden-onset pediatric obsessive-compulsive disorder. My girl is possibly the most gentle soul you will ever meet, a person who weeps over fiction as if it were happening in real time, someone who can’t stand the idea of an animal or a human being suffering any kind of pain.
And now she was suffering, terribly.
For years she’d struggled with anxiety, and we had her in therapy to try to alleviate some of the fear and panic she experienced over normal, everyday stuff that most kids are able to brush off. We won’t ever know what triggered the OCD, but we do know it’s often associated with Generalized Anxiety Disorder.
According to the International OCD Foundation, about 1 in every 200 kids has the disorder, which is roughly the same number of children who have diabetes.
Diagnosing and treating the disease that was hurting our child was perhaps the most frightening part of her sudden spate of symptoms. We live in a small Midwestern city with limited mental health resources. After being told there were no appointments with a psychiatrist available for months, it was suggested we consider committing our little girl to a psychiatric in-patient facility if we needed or wanted assistance sooner.
Thankfully, I have influential connections in my community and a friend helped us get her seen quickly. After that, it was a series of trial-and-error experiences when it came to treating her OCD. We shuffled through a couple of therapists before we found the truly gifted woman she is still currently seeing.
We also decided to treat her medically, meaning that she takes an antidepressant. The meds help get her brain chemistry on an even keel and mute the anxiety that drives her intrusive thoughts, while behavior modification therapy gives her a set of concrete strategies she can use when she has what we call a “flare-up.” These flare-ups happen a lot around events or activities that cause disruptions in her routine. School plays, tests, and even holidays and visits from extended family can all trigger her OCD.
It isn’t always easy to parent a child with OCD. The most persistent symptom for our daughter is called checking behavior. She has to “check in” with us over and over about her worries. For instance, she’s terrified of being disrespectful to adults and this manifests as a fear of rolling her eyes at grownups. There have been times when she has asked me, over and over, if she rolled her eyes or not. The answer is always no, but she can’t stop asking.
She has a lot of fears and obsessive rituals about foods, which make socializing or traveling tough. OCD also causes psychosomatic symptoms. When we travel, she almost always experiences nausea. While not triggered by an actual physical ailment, it’s real nonetheless, and we’ve cleaned up many a mess from the backseat.
I’m not always as patient and understanding as I’d like to be, and that’s something I work on every single day. As much as I love her — and I love her more than words can say — it can be exhausting. Having a child with a mental illness isn’t like having a kid with the flu. Mental illnesses never just go away. You have to learn to manage them.
The Center for Disease Control reports that as many as one in five kids have a mental illness. Some states, like Massachusetts, are taking the lead to make sure those kids are actually diagnosed, according to the Boston Globe. However, even as it screens them, finding treatment is still an issue. The Globe points out that many primary care doctors aren’t able to provide that kind of support for pediatric patients, and I’m here to tell you that is the truth.
But we’ve been very lucky: our daughter manages a behavioral modification regimen that most adults wouldn’t be able to successfully implement. Together with her medication and strong support from me, her father, brother, and the rest of our extended family, she is a healthy, thriving 8-year-old today, one who just also happens to have OCD.
In fact, just last month, she wrote this for a school essay assignment, which she titled “Monsters”:
Are you afraid of monsters? I have one of my own. My monster is OCD. But I can shrink him and here are the steps. I breathe deeply. Then I find out what’s making me worry. Afterwards I deny the reason. Finally, I tell my mom and it makes me feel better. My monster is not gone, but it got a lot better. And I hope other people with OCD succeed in shrinking it, too.
And just like that, the scariest thing I’ve experienced as a parent became one of my proudest moments, ever.