4:35 a.m.

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I’m awakened by a feeling…by the sensation that someone is standing over me as I sleep (thank goodness that movie I watched before bedtime was not a horror film).  This has happened many times before.  I know it’s my son.

“Why does he stand over me without saying a word?”

I slowly open my eyes.

“What is it honey?”

“I can’t sleep,” he tells me.

This is not new.  He’s always had a tough time sleeping – even when he was very little.  But lately it’s been out of hand.  He doesn’t get to bed at a reasonable hour.  We’ve had a houseguest staying with us this summer and he found him in the family room at 5 am.  He was surprised that this young teen had gotten up so early.  It turns out he hadn’t gone to bed yet.  He sleeps until 2, 3 or 4 in the afternoon.

I know lack of sleep is one of the worst things for a kid struggling with OCD, but lately I haven’t been willing to fight with him anymore.  I can’t bear to beg him over and over to please go to bed.  Can’t take the frustration of going into his room and telling him it’s time to start his day – staying in his room until he climbs out and heads for the bathroom, only to return fifteen minutes later to find him fast asleep again. Can’t repeat this process over and over all morning and into the afternoon – only to have him still finally wander out of his room at 2 pm.

I glance over at the clock on the nightstand.  4:35 a.m.  I have a friend who is out of the house by this time with her ice skating daughter most mornings.  Not me.  I’m a 6:30 a.m. waker on an early day.  Not today, though.  My husband is away and it’s difficult to fall asleep without him here.  I watched a movie before bed last night and it was 12:30 a.m. by the time I finally turned the light out.  A late night for me.

“When did you go to bed?” I ask him.

“I don’t know.  I just can’t sleep.  Can I sleep on your floor?”

“Sure.  Get a blanket.”

“I’ll just sleep on these pillows,” he says.  He’s referring to the decorative pillows from my bed which are strewn across the floor.

“No,” I say in my groggy state. “Get your pillow and a blanket.”

“Oh, I can tell you are really tired,” he says.

“What clued you in?” I wonder this silently to myself as my eyelids drift shut.

I try to fall back to sleep but I can feel something isn’t right.  Some kind of tension.  I open my eyes several minutes later and spy him curled up on the carpet.  No cover.  No blanket. Tossing around.

“Honey, go get a blanket and a pillow if you want to sleep in here.”

“Well….” he starts slowly, “that’s part of the problem.”

I know what this is.  I just know it.  I know this way of talking.  He’s hedging – trying to figure out how to deal with this situation without giving himself away.  His OCD is shouting at him, “DON’T TELL HER THE TRUTH!!!  DON’T GIVE ME AWAY!!”

In my fuzzy state, I have little tolerance for his dancing around the issue.  I get out of bed.

“We are going to get you a pillow and a blanket.”  I don’t sound very nice.

“But see, that’s it, Mom.  My blanket smelled like maybe the cat peed on it.  Just on a little spot anyway.”

I get to his room as he finishes saying this.  Every blanket and sheet, except the fitted one is on the floor.  He’s been trying to sleep with no covers – tormented by the possibility that a pet snuck into his room sometime during the day and relieved itself on his covers.  It’s not that far fetched.  It’s actually happened before. Ever since then, though, he’s kept his bedroom door shut tight all day.

Today was no different.  I know that no animal has been in his room – or on his bed.  Still, I find myself reaching for his blanket, bringing it to my nose and sniffing it.

“What on earth am I doing?”   I think to myself.  As tired as I am and foggy as my brain still is, I know that this doesn’t help.  But I just want to go back to sleep.  I don’t want to think of the right thing to say.  I don’t want to put this back on him to struggle with.  I want to sleep.  So I offer up the reassurance – something we both know is probably true but misses the mark all the same.

“No animal peed on your bed today, honey.”  Then I add, “This is your OCD getting in your way of having a good night sleep…depriving you of your own bed.”

“Was that last part the right thing to say?”

I’ve promised that I’m not interfering in his struggle with his OCD.  I’ve told him that I won’t offer up comments or suggestions unless he asks for them.  I haven’t been true to my word.  But it’s 4:45 am now and I am sooo tired (I keep saying that, I know.  It sounds whiney now as I write it.).

I climb back into bed.  “I love you.  Good night,” I say.

I shut my eyes and hope I will fall back to sleep.  I can hear him adjusting his things on the floor and then I hear his prayer ritual begin.  I hear him pacing back and forth on the floor, repeating the motions of a religion I will never know.

I woke up an hour and a half ago.  It’s 10:30 a.m. now and he’s still asleep on my floor.  I can hear the alarm ringing in his bedroom down the hall.  It’s part of his attempt to get up at a reasonable time – to regulate his own sleep.  I admire the fact that he recognized that there is a problem and that he’s trying to change it.  But he can’t hear the alarm while he’s asleep in my room.  Do I let him go on sleeping?  Do I wake him and let him decide what to do…?

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How Is Your Son Doing?

“How is your son doing?”

The question came from the father of a young man with OCD during a treatment session.  We were talking about his son and how he could support him.  And we were discussing how OCD can co-mingle with other issues in adolescent development.  It was a significant meeting because he was so rarely available to be a part of his son’s treatment.

I do not talk about my own son when I’m treating others. It’s not the place.  But many of my patients (or their parents) know that I  have a child with OCD.  Some of them know because a quick search of me on the internet shows links to workshops, interviews or other things I’ve been involved with in my quest to be an OCD advocate.  The details are few, but still, the information is out there.  Sometimes in connecting with parents, I let them know that I have a child with OCD – that on some level I understand what they are going through.  But that’s it – we don’t talk about my family or what our struggles are.  At the same time, I’d been fearing this question.

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When I first decided to begin treating individuals with OCD in my practice, things were going very well at home.  My son (and the whole family, for that matter) had been through Cognitive Behavior Therapy – with Exposure and Response Prevention (CBT-ERP).  He had embraced it.  He was pursuing things he hadn’t been able to when OCD gripped his life.

Personally, I had come out from the rock that I’d been hiding under while he was in the throes of severe symptoms.  I spoke at a conference for the first time in years.  I became passionate about educating the public and other mental health professionals about OCD (it’s amazing what some of the beliefs still are out there, but that’s a topic for another time).  Then came the requests to consult on cases, which of course led to seeing my own first patients with the disorder.

As my son slipped into a relapse, it became apparent that this time around he wasn’t on board with treatment.  He was not going to do any exposure that anyone designed for him, and he wasn’t willing to design any for himself.  He didn’t want anyone in his business.  It was HIS OCD.  The ironic thing about this is that he is the first person to stand up and educate others about OCD.  He speaks up to his classmates.  He tells me to remind my patients that the “relief” that comes with doing rituals is just “a trap” that will keep them more and more imprisoned.  Heck, he had the opportunity to educate a reporter about OCD the other week and from the next room I could hear him emphatically telling her that kids with OCD should not distract themselves when they start to feel uncomfortable, because it is in feeling discomfort – and allowing themselves to adjust to it – that they get better.

During the time that he has been struggling and refusing help, I’ve been grappling with feeling a little like a fraud.  If my own son is struggling, how do I speak up about treatment?  How do I remain an advocate?  How do I treat others and tell them that treatment works?  How do I deal with it if the questions come about what is going on at home?  Those questions were hard for a long time.  The answers are that I still know that treatment does work.  I’ve seen it at home and in my office.  I still want others to stop suffering in silence.  I want them to know that there is hope and help.  And I want mental health professionals to better understand OCD to recognize the appropriate treatments for it.

It’s just that, as a mom, I’m achy inside.  I love my son and I want him to feel as good and as strong as he possibly can.  The times that I’m feeling the pain a little more are the times I start to second guess myself – and I have to not let that undermine what I ultimately believe.

“How is your son doing?” he asks me.

I know he wants to know if his son is going to get better.  He wants to know how this might play out.  I take a breath.  I answer him honestly.

“He’s struggling right now,” I say.  “He knows what to do.  He knows what works. It’s up to him to decide to put it to use.  It’s like we were just talking about with your son.  Adolescence can add a whole new dimension to OCD.  Your son is open to treatment.  He wants to get better right now.  Your being here and supporting him is so important to him.”

I don’t dread the question anymore.  Really, it was never the question I feared at all.  What I feared was my own feelings of despair about my own son. I put too much emphasis on his feeling good as the way to my feeling good  As a mom, I will probably always hurt when my children hurt but it is up to me to find things to feel good about, to improve my own life situation.

I believe that there is value in all life experiences.  While it stinks that my son has relapsed, it also gives me more empathy when it happens with patients at work or when it happens to those around me in my personal life.  And it helps me to practice what I preach when I tell families that they have to stop being the “OCD Police” at home and back out of their loved one’s rituals.  It makes me more humble overall and it reminds me that we are all human.

Speaking of being human, if you ask my how my son is doing at being a human – well then, he is doing amazing.  OCD is just one part of his life – and it is a young life that is rich and full.

We Are Here

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A couple of years ago, our family thought we had kicked OCD to the curb. Our son was doing great and he could look those OCD thoughts and fears in the face and tell them where to go. A lot of times, he barely even noticed them. My husband joked with him that they were going to revoke his OCD Club membership.

Enter – PUBERTY.

The first thing that we noticed was that his fear of touching plants was back. My son used to be afraid of touching nature. It was dirty. It might contaminate the whole house. He had tackled that one long ago through countless exposures in cognitive behavior therapy (CBT). You would hardly believe what the kid had been able to touch – what we all touched as we went through therapy with him. Now, 4 years later, he ducked under low-hanging branches and side-stepped shrubs. He had to run to wash whatever had made contact with the offending plant. That meant sometimes his hair went under the faucet while we were out at the mall or his shirt sleeve was soaking wet and soapy at the amusement park.

He called his OCD therapist for tips and encouragement. They developed a plan for how he would beat OCD this time around. But he never followed through.

“It’s too hard,” he’d tell me. “I’ll fight it when I want to. It’s not that big a deal.”

We reminded him that, hard as it is to fight OCD, it gets tougher the more you give in to it. He pushed back against us. He wanted to do it his way. We wanted to support him. So we backed off – and, as it happens with OCD, the disorder found new ways to creep into his life.

That is when scrupulosity entered our family life.  Scrupulosity – I’d never heard of it before I started learning about OCD.  I can tell you this though, knowing what it is and living with it – those are two entirely different things.

The International OCD Foundation (IOCDF) defines scrupulosity this way:

A form of Obsessive Compulsive Disorder (OCD) involving religious or moral obsessions. Scrupulous individuals are overly concerned that something they thought or did might be a sin or other violation of religious or moral doctrine.”

Okay, but what does that look like?  In our son’s case, he started to worry about being the perfectly best gentleman he could.  You might wonder, “What’s wrong with that? It’s good for a teen to be respectful and helpful.”  And I probably sound ungrateful.  Believe me, it tore at my mom-sense explaining to people that my son was too polite and too helpful.

Imagine this:  You are on an airplane with 200 plus other people.  Someone sneezes.  Your companion says, “Bless you,” to them.  They sneeze again.  He says it again.  That sneezing person is sitting ten rows ahead of you and never heard the “Bless you.”  Fifty people on the plane are sneezing.  Your companion says, “Bless you,” every time any one of them sneezes -even if you’re in the middle of a conversation with him.  That’s a true story.  It was a 5 hour plane flight.

We’d go to dinner as a family.  He’d say, “Thank you,” to the server for his glass of water…and for my water, and my husband’s water, and his brother’s water, and the water he brought to the table next to us.  He said, “Thank you,” to everything the server did for anyone within his eyesight for the entire meal.  The poor guy couldn’t rest.  He had to be constantly vigilant – and we couldn’t have a dinner conversation.  When it finally came time to leave, he could not exit until he had pushed in everyone’s chair at our table – perfectly straight.  And then he had to fix the chairs at every single table he passed on the way out.  He couldn’t leave a mess for the servers.  We were ready to pick him up and carry him out of the restaurant.

It also took hold of religious practice.  Prayers had to be said perfectly.  If they weren’t or if he wasn’t sure if they were, he had to begin again.  A 5 minute prayer could take 20 minutes.  He was seized by fear that something bad might happen if he didn’t get it just right.

My husband and I told him that despite his wanting to do this on his own, as parents we had to step in and get him back into regular treatment for the OCD.  He balked.  He was angry.  It was our problem. He could do this.  He didn’t want any help.  And this is how he entered treatment.

After some initial resistance, he decided to prove to everyone that he could do it.  Mostly, he wanted to get out of treatment – and getting better seemed the only way out.  And he made lots of progress.  But then, he started to resist more strongly than ever.  He insisted that it was everyone else’s problem and that he could fight his OCD when he wanted to – on his own terms.

The treatment team held case conferences.  They brought in religious leaders to talk with him. They tried to incentivize him for doing the work.  Ultimately, he didn’t want to do the work.

My take on it is this:  He’s a teenager.  He wants to be independent.  He wants to separate from Mom and Dad.  Mom and Dad want him to get healthy.  He asserts his independence by showing us that we can’t force him to participate in treatment.

His therapists, my husband and I ultimately agreed that continuing to bring him to treatment when he doesn’t want it is counter-productive.  If he’s going to get better, it is going to have to come with a decision on his part to do so.  Sadly, we laid it out for him:

You say you don’t want to be in treatment.  You say you want to do it on your own. We are giving you what you asked for.  You can always return to treatment, but for now, we are done.  Our family will leave you alone.  We will  not point out your symptoms.  We will not give you suggestions on how to handle your rituals.  And we will not participate in them either.  If you want our help to resist OCD, please ask.  We love you.

And so…we are here.  He is not in treatment.  We have backed off.  The rituals are still here, but we are finding a way to live as peacefully as we can and not to make OCD the center of our lives.  As a family, we hold out hope that the day will come when he will want to fight OCD more than he wants to fight us.  He has the tools. He knows what to do.  The journey continues….