Raising a child with a mental illness – any mental illness – can be a soul crushing task, but sometimes I feel that raising a child with Obsessive Compulsive Disorder (OCD) must be the most soul crushing of all, partly because it’s so misunderstood. There’s a misconception swirling around OCD that it’s really all about being neat and organized. Celebrities toss off in interviews and those often irritating “25 Things You Don’t Know About Me” lists that they have OCD. “Oh, I’m definitely OCD,” they claim and then go on to explain that everything needs to be in it’s place or perhaps they like everything – from books to spices – arranged alphabetically. Um, that’s called being neat. And organized. Maybe even anal – I’ll give them that. But, OCD it’s not.
Because of this misconception, it’s difficult for people on the outside of your immediate circle to understand that for a child with OCD activities that engender excitement in a typical child (I won’t use the term, “normal child,” because really who’s normal? And what even constitutes normal?) causes a tidal wave of anxiety in one with OCD. Summer camp trips for example – a trip to the amusement park can lead my son, X, to become so riddled with anxiety that he loses weight. Not a few ounces – a few pounds. If you’ve read Hungry, you know why this is a problem. Add in a stay at a hotel and the panic that sets in is off the scales.
His camp has been great in trying to soothe his fears. His counselor assured him that no one would make him go on any rides. The nurse said that he can come to her room during the night if he has anxiety. I told him he can call me any time – even in the middle of the night and I’d answer my phone and talk him down from whatever fear is haunting him. I told him that he’ll be so, so happy if he does this and has fun. We even talked to his therapist about it. We came up with all the reasons that he should go, especially the fun he’ll miss. But, most importantly – I told him that if he gives in to the fear, the OCD wins. Nothing I said really mattered, though. He had made up his mind before camp even started that he wouldn’t be going on this trip.
Complicating matters, a boy in his group has been quite mean to him. He’s not singling X out – he’s mean to other kids too, but X probably suffers more than the others, because this boy’s poor behavior centers around invading X’s personal space and touching his things (grabbing his lunch, reaching into his backpack, throwing his shoe down the hall, etc.). Actions like these are often major anxiety triggers for X. If he’s already anxious, it’s just a million times worse. (And yes, the counselors have talked to this boy.)
And so, instead of my dropping him off bright and early in the morning to climb on a coach bus, he’ll sleep in. He’ll have a bowl of Cocoa Puffs and watch Zoey 101 or Victorious reruns. He just went to sleep and it’s after midnight – 12:04 am to be exact. He feels terrible about not going – he feels like he’s disappointing his buddies who were hoping he’d go and room with them. He feels self-conscious about his decision too, like he’ll be judged. We told him whatever he decides to do, it’s ok – but, it’s a delicate balance. You want to really encourage him to go and get out of his comfort zone, but you don’t want to make him feel bad about his limits.
Already, he’s done more this summer than last summer. He went to a water park almost an hour away and saw Wicked on Broadway. He was so nervous about both trips, but we talked him into going. I can’t take full credit for the water park trip, though. If you read The Power of Kindness, then you know the extraordinary effect John Giannone, the New York Rangers sportscaster, has had on X. He really helped him turn his life around this past Spring, allowing X to gain eight pounds and shoot up two inches in just a few short months. If you haven’t read the essay, read it – it will restore your faith in the kindness of people when the world can seem very unkind. (That last statement may risk coming across as hubris – I’m not speaking at all to my writing, just the amazing story itself and the effect it has had on those who have read it.)
It was, quite frankly, miraculous and I started believing that perhaps the worst of X’s OCD was behind us. But, that was pretty Pollyannaish of me, I have to admit. While X has not gone back to the food routines John helped banish – a HUGE, HUGE accomplishment – he is still hounded by other fears. The important thing though is that those fears won’t kill him, but not eating could. So, I owe John more than I could ever possibly say. (I mean, really, how do you thank someone who pretty much saved your kid? It’s just not possible, but I’ll keep trying.) He is an incredible person – perhaps the kindest, most selfless person I know. And, he’s the reason X went to the water park.
The night before the trip X was a mess. He had been spiraling downward for three days, not sleeping, not eating and lost three pounds, something he could ill afford. I reached out to John in desperation at 12:30 at night and he wrote X a lengthy email as soon as he got my message, even though he had just returned from a trip and was no doubt exhausted. It made a world of difference.
X was so excited to wake up to an email from John and looked forward to showing the email to his friends. It distracted him just enough to go. So, I can’t really take credit for talking him into going to the water park and I certainly wasn’t able to talk him into going on the overnight, no matter how hard I tried. (And, if you’re wondering why I didn’t enlist John’s help this time – I’ve dumped far too much on the poor guy already, including enlisting his help in my own professional conundrums, since he’s also a fantastic writer. He deserves to spend time with his family during his summer break and relax – not put out our fires.)
Plus, I don’t really know if even an email from someone X looks up to so, so much could have convinced him to go – the fear was so palpable. I’m sure there are some reading this who will shake their heads and wonder why I didn’t just force him to go. I’m pretty sure his friends won’t understand. They’re still young, after all. And, I wouldn’t be surprised if the camp staff doesn’t quite get why he’s not going. To tell you the truth, I don’t blame them. It’s really not their faults. It all goes back to those misconceptions – to the fact that most people don’t realize exactly how much of a prison OCD really is.
To be honest – I thought I would end this blog post right here, but in searching for images to pair with the post, I realized something quite disturbing that just solidifies my feelings that OCD is regarded as somewhat of a joke. I’d say four-fifths of the images I found were “funny.” I put funny in quotes, because they really weren’t. Supposedly funny t-shirts popped up, even comic strips with names like OCD Girl and titles like Hallo-clean poke fun at this extremely serious mental illness. And, there were more cartoons than I can count.
Would you wear a t-shirt that says, “I’m bipolar” with a funny punch line under it? How about a shirt referencing schizophrenia with a witticism making light of the illness? No? I didn’t think so – it would be terribly politically incorrect and yet, people continue to find OCD funny. They continue to trivialize it. When I introduced my son to his fifth grade teacher, she said that they’d get along great, because she had OCD too. “Everything in my room needs to be in it’s place,” she chirped and I seriously wanted to smack her.
So, the next time someone says, “I’m so OCD – I have to vacuum my living room every day,” enlighten him or her. Say, “That’s not OCD. That’s just being neat.” (Of course, the exception is someone like my grandmother. She would stay up cleaning every single night until 3:00 am. I’m fairly certain she had OCD, but was never diagnosed. After all, OCD does have a genetic component.)
And, if you see a cartoon or t-shirt that says something like, “I’m CDO, it’s like OCD, but the letters are in alphabetical order – as they should be!” realize that OCD is no joke – it’s a serious disease that robs even children of the happiness they so deserve…
For more information on OCD:
Read Twice Exceptional on my first blog, Boys, Dogs and Chaos
Visit the International OCD Foundation’s website
The cycle of OCD:
Top photo credit: dvdbeaver.com review of Obsession, a film by Edward Dmytryk
Bottom photo credit: brynmawr.edu