One Small Move

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Scrupulosity.  Such a funny sounding word to me.  I’d never heard of it before Blake was diagnosed with OCD.  After that, I thought for a long time that it was about being very religious, or rather, religious rituals being a part of OCD.  And that is true, to  a degree, but there is more to it.  According to the Fact Sheet on Scrupulosity from the International OCD Foundation, scrupulosity is:

“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.”

So, it’s not just religious in nature. It’s also about morality – and about being a “good enough” person.  The scrupulous individual might wonder, “Did I thank that person enough?”  “Did I accidentally look at someone the wrong way?”  “Did I think about something that is unacceptable?”

When Blake was diagnosed with OCD, he had the more common obsessions about germs and rituals that involved over-washing.  He also did some tapping. Scrupulosity, though?  I thought we’d never see that in him.  Boy have I learned a lesson about assuming “never.”

While Blake’s first go round in treatment addressed these earlier symptoms, and he made a terrific recovery, this new bout he is having with OCD emerged just as he was hitting puberty.  The first thing I can remember seeing is him having an overwhelming responsibility for litter.  The teachers at school were trying to imbue in these 7th graders a sense of responsibility for keeping their environment picked up.

Blake picked right up on this, and made sure his classroom was completely clear of litter.  I can recall waiting for him after school on numerous occasions where he didn’t show up for 15 minutes after school had ended – long after the last student had wandered past me.  He’d come rushing out, looking flustered.

“Sorry, Mom.  I was cleaning up.”

Soon he couldn’t walk past a piece of trash on the ground without panicking and having to stop and pick it up.  Then came the incessant need to say, “Thank you” and “Bless you.”  Then came the religiosity.  More and more prayers and religious rituals infiltrated our lives – a surprising thing from a child who, previously, had argued with me vehemently that I was making him hate religion by sending him to religious school.

When we re-entered treatment, many of Blake’s scrupulosity symptoms responded well to Cognitive Behavior Therapy – and Exposure with Response Prevention.  The “thank you’s,” “bless you’s” and litter pick up fell away (except when appropriate). The religiosity proved more difficult.  It was tricky because true religious observance was intertwined with OCD ritual.  Blake wouldn’t tolerate having them pulled apart, and when he finally refused any more treatment, the religiosity was deeply entrenched.

A Small Move In A Positive Direction

In the time since he left treatment, Blake’s religiosity has remained an untouchable domain.  He prays.  He repeats his prayers. He repeats them again – or perhaps he starts over midway through.  He has taken to consulting with religious “experts” about his behavior, sometimes going to people we trust and sometimes going to internet advice-givers who are complete unknowns.  In most cases, he takes the advice to the extreme, holding himself to some higher authority (that higher authority being OCD’s never-ending doubt and uncertainty).

This past week, there was a small shift, yet big just the same.  Blake was in another religious crisis.  He’d discovered yet another of his religious and moral failings and he was desperately searching for guidance on what to do.  He called my brother-in-law. He researched the internet with zeal.  He cried at what he read and tried to hide his tear-reddened face from me.  This issue was cutting at something very dear to his core and my husband and I wondered how this would affect his way of life.  Then, suddenly, there was peace.

“I learned something this week,” he told me.

“What did you learn?”

“I learned that I have to start trusting myself more.”

“What helped you realize that?”

“I was reading through all these opinions.  And then I realized that what people were saying I know deep down is not true.  I completely disagreed with what they said.  And that’s when I knew that there may be lots of opinions out there, but I have to do what I think is right.”

And just like that, he decided that his behavior was not some moral or religious failing that had to be rectified and atoned for.  Now this is really small, and yet it is really big.  Blake has never before questioned the most extreme religious opinion out there.  It becomes the new gospel – and then OCD takes it even further.  This one time, he let his own conscience and belief be his guide.  One time – that’s all it takes to begin.

Could there be more in the future?

OCD Makes a Meal

It’s almost dinner time and I’m preparing the evening meal – for everyone except Blake.  I still ache a bit that my son will not eat the food I prepare, but the pain is much less acute now.  It’s more of a dull presence that’s always somewhere in the background.

Blake is getting ready to prepare his own meal.  He steps to the sink and begins to wash his hands.  He pauses for a moment, pulls his hands from the water and begins to examine one of them.  He turns off the water and tears a paper towel from the roll.  He begins to dab a part of his hand with the towel, then applies pressure for a moment, lifts the towel and looks underneath it.

“How did that happen?” he asks himself out loud.

From my spot at the kitchen counter, I stay quietly focused on my task.  I glance over at this whole series, but try not to make it obvious that I’m watching.  Blake’s hand is bleeding as he is washing it and he is wondering why.  In my heart I know why and I wonder if he is really so disconnected from his behavior that he honestly has no idea why his hands are in this condition.

Finally satisfied that the bleeding has stopped, Blake continues his meal preparation.  He pulls a plate out from the cabinet.  He inspects it fully, turning it over to look at the bottom, as well.  It seems to meet with his approval.  He walks to the silverware drawer and remains there for some time.  He picks up one spoon, then another.  The process continues until one seems to work.  I notice him holding the spoon up to the light, doing a thorough check of it.  It passes inspection.

Blake is making pita bread pizza. It’s one of his staples ever since my husband and I put him in charge of making his own meals.  We could not keep up with the ever growing (and changing) list of food rules, nor did we wish to continue to accommodate this behavior.  Thus, we are here now.

The bread is still frozen as he places it on the plate and spoons pizza sauce on top of it.  Our microwave oven is contaminated in his eyes (see earlier article).  Better to eat food that is still frozen than risk contamination.  Next, he begins to grate cheese.  He is struggling with the grater.

“Mom, what’s the problem here?”

I can see that it’s just a matter of positioning, and I reach over to show him.  As my hands near his, I see him flinch.  He pulls the cheese closer to him.  I pull my hands away.  There are no words exchanged, but, in the silence between us, I know that he is afraid that the food I’ve been preparing will contaminate his.  I feel a wave of frustration cresting inside me and I catch my breath, resisting making the remarks I can feel trying to make their way out.  This time, I am successful.

“Place the grater on top of the bowl you’re using.  That’ll hold it in place better.”

He makes the adjustment and adds the cheese to his creation.  As we sit down to eat, my husband notices Blake’s meal – the unmelted cheese, the still partially frozen pita bread.

“Blake, aren’t you going to cook your pizza in the oven?  Or are you going to eat it that way?”

Blake doesn’t answer.  He doesn’t acknowledge his dad at all.  He’s deep in his pre-meal prayer and he won’t break the silence until the first bite of food is chewed and swallowed.  I guess my hubby doesn’t know about this rule because he seems puzzled.  He tries again.

“Blake?  Did you hear me?”

Still nothing.  Now hubby recognizes the ritual.  He engages me in conversation.  Finally, with his routine complete, Blake acknowledges Dad.

“Sorry, Dad.  I couldn’t talk then.  Yes, I’m going to eat it like this.”

My husband knows better than to challenge this or comment any further.  We turn the conversation to our days and to reconnecting with one another.  My husband and I recognize the OCD elephant in the room, and we know that it is up to Blake to decide if partially-thawed, uncooked food and bloody hands are worth it.  We hope that he will decide that they aren’t, and we love him enough to let him come to that conclusion on his own.

Parents: Share Your Thoughts

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Are you a parent of a child with OCD or an anxiety disorder?  I would love to hear your thoughts.  I mentioned in a previous post that a proposal I submitted to do a presentation at a national conference was accepted.  In a couple of months, I will be traveling to attend and present at that conference.  My topic is about the important role parents play as part of their child’s anxiety treatment team.  I will specifically be identifying things clinicians can do, or can encourage parents to do, that will help parents be a strong link in the treatment team for years to come.

For example, when my son was first diagnosed with OCD, his therapist suggested a couple of books for me to read.  I did so – voraciously – and they helped me to really wrap my head around his diagnosis, and to understand how to effectively support his recovery (even in situations we hadn’t discussed in treatment).

Another example comes from my experience as a clinician working with parents with anxious children.  I find that it is essential that I convey empathy for what a parent is going through.  Many parents are terrified, frustrated, confused or a plethora of other emotions when they walk through a therapist’s office door.  A parent who feels understood is going to be a much more willing and confident participant in the treatment team.

So my questions to you:  What things have you found help/helped you to feel more a part of the treatment team, or to feel more connected to what was going on in treatment?  And what helped you to feel like you were/are valuable and effective at helping your child overcome anxiety?

I will be presenting to clinicians and researchers from around the United States and Canada and I would love to incorporate the ideas of other parents into what I share.  Please put your thoughts in the comment section below.  All identities will remain confidential in my presentation.

I look forward to your thoughts!  – Angie

I’ve Got To Meet That Kid!

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Goodness, what an emotional week this has been.  Plenty of ups and downs.  As I’m writing this, I am feeling pretty exhausted.  I had the honor of doing a very early in-home visit with one of my young patients this morning.  This was on the tail of three nights with very little sleep.  It’s not that I haven’t been in bed at a reasonable hour; I’ve just had a sense that I’ve been awake far more than I’ve been asleep.  At any rate, I was out the door very early, as I had to be at the home in time for my patient’s wake up and morning routine.  I have a very interesting job – working with anxiety.  It frequently takes me out of the office and into lots of different settings.

Earlier this week, as we sat at the dinner table, I mentioned to my husband that I’d be leaving extra early one day this week to do a home visit.  Blake and Michael were deep in their own conversation, or so it seemed, until Blake perked up.

“Home visit?  Is it one of your patients?”

“Yes.  I’m working with someone whose anxiety is very rough on them in the morning.  By going to observe, I can get a better idea of how to help.”

“Ohhhh!” he exclaimed.  “I need to meet this kid.  I want to talk to them.”

He wanted to help and the desire was bubbling up inside of him.  Actually, I’d never seen him wanting to reach out to other kids like this.

“I think you’d be terrific talking with other kids with anxiety, Blake.  If you’d like, we can find a way you can do that.”

“But, Mom, I need to talk to this one!”  He felt pretty certain of this.

We talked for a bit about why it’s not possible for him to meet my patients – confidentiality, boundaries and the like.  I offered several options for him to connect with other kids with OCD and anxiety.  He seemed to mull them over, but it’s anyone’s guess when, or if, he will act.

In the meantime, I continued to grapple with my professional role this week.  In the past months, I’d applied for a leadership opportunity with a respected national organization and I’d also written a proposal to make a presentation at a national conference on anxiety.  This week, answers came to both of those.  On the leadership opportunity – I wasn’t accepted.  I felt pretty sad.  For the presentation – I was informed that there had been an unprecendented number of proposals…and mine was accepted!  So, Angie will be traveling and doing her first ever solo presentation to a national organization.  I’m really looking forward to it – and a little anxious, too!

Best regards for a meaningful week!  – Angie

It Must Be The Weather

That hand washing and Obsessive-Compulsive Disorder are so commonly linked sometimes seems cliché. Think of OCD = think of hand washing.  While OCD can manifest itself in a seemingly infinite number of ways, one reason hand washing has become so linked with the disorder is that it happens to be a common compulsion.  In fact, although Blake showed symptoms of having obsessions (intrusive thoughts) for some time before we noticed compulsions, it was his frequent and excessive hand washing that finally tipped us off (I shudder to think how much longer it would have taken me to wake up if his obvious compulsion had been something other than hand washing).

Over the years, Blake has had numerous obsessions and compulsions.  They morph frequently.  OCD likes to play that trick.  One obsession or compulsion disappears.  As a parent in the early stages of dealing with this disorder, you can almost be tricked into breathing a sigh of relief.  You think, “Ah, I’m so glad that’s gone.”  But then, something else arises.  Washing makes way for tapping.  Tapping makes way for bowing.  Bowing makes way for pushing in every chair in the entire restaurant.  After a few of these incarnations, you learn that OCD is an evolving disorder that leaves you guessing where it is going to pop up next.

Over the years, Blake’s hand washing has waxed and waned.  Over the past year it has taken up residence again.  Blake’s poor hands looked weathered and chapped.  They are cracked and rough with hard patches that I’m not sure will ever return to normal.  One day, a few weeks ago, I noticed how awful his hands looked.

“Your hands look like they really hurt, honey.”

“Yeah, I don’t know how that happened.  It must be the weather.”

“Ummm…I think that’s more than the weather.  You’re probably doing a lot of washing.”

“I don’t know when, Mom.  I really don’t.  At least I’m not aware of it.”

I think he meant it.  I actually think he’s not aware of his hand washing.  That’s how automatic it’s become for him.  Or maybe he doesn’t want to know…

I do know, though.  After his statements, I became sort of curious about this hand washing thing.  I mean, I’m living with the same weather.  Plus, my hands are in the water all the time.  I wash most of the dishes.  I clean the turtles’ yard.  I wash out the cat litter boxes.  I bathe the dogs.  At worst, my hands get a little rough.  What was he doing that his hands were in that state?  So I started to take better mental notes and then I documented what I noticed.

– He pet the dog.  He washed his hands.

– He touched the laundry in his hamper.  He washed his hands.

– He put a dish in the dishwasher.  He washed his hands.

– He went to the bathroom and washed his hands.  He washed them again when he  made it to the kitchen.  He winced in pain.

– He came back to the sink right after that and washed again.  He winced again.

– He wiped down the kitchen counter with  sponge.  He washed his hands.

– He touched the pantry door.  He washed his hands.

– He got up from the couch where he’d been reading.  He washed his hands.

– A napkin I’d been holding brushed past his face (it wasn’t dirty, by the way).  He washed his face – and his hands.

Blake may say that the weather is the reason for the condition his hands are in. He may even believe that.  His behavior tells a different story.  He is so locked up in automatic washing that his poor hands don’t stand a chance.  However, since he insists he’s got his OCD managed and his dad and I have pledged to let him manage it in his own way, we don’t point this out.  We wait, instead, for Blake’s own awakening.  Until then, he will continue his absent-minded washing.  Or perhaps it will morph into something new, and something new again – on an ever-renewing journey until Blake decides he’s had enough.

Developing My Improved Attitude

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When I posted a few days ago, I noted that I needed to address two ways that I feel I contribute to the maintenance of Blake’s OCD.  One of those is my attitude – the need to be more patient, less quick to anger, less tense, more loving overall.  I need to look less for OCD and more for the wonderful parts that make up my 14-1/2-year-old-son.  Since we’ve been alone while my husband and Blake’s older brother, Michael, are in Central America on a service trip, there’s been a lot of opportunity for me to practice and to step back and observe my interactions with Blake.

While it is definitely challenging to confront myself, we have definitely had a much improved few days around the house.  That doesn’t mean that Blake’s OCD has changed any.  It hasn’t.  He still washes just as much, prays just as much, refuses to cook in/on our “contaminated” appliances and pots and pans, and panics just the same.  What is different in this little bit of time we’ve had so far is the amount of tension between the two of us – and I think that makes life better for us both.  There’s been more laughter, more relaxing and more heartfelt hugs (Well, I’m the one who usually does the hugging.  He is, after all, a teenage boy.  But I did get a spontaneous kiss on the cheek from him yesterday).

I think Blake is a little bit confused by the decrease in my “getting into it” with him.  He’s been a champion arguer since he could verbalize (probably even before).  As a teen – and one with lots of rigid OCD ideas – he’s constantly ready to spar with me.  Over the last few days there have been several times he’s shared some of his rigid thinking.  He just plops it out there and waits for my response.  So, I’ve given him responses:  “Oh, that’s an interesting way of thinking.”  “Hmm, I’ve never thought of it like that.”

“Is that all?” he asked me, quizzically, one time?  “Aren’t you mad?”

“Nope. Not mad.  That’s all.  Glad you shared.”

The toughest challenge I faced was when we made plans for the day yesterday and Blake didn’t hold up his end of the bargain.  We’d agreed he would be up and ready to go by 10:30 am.  We went over it several times.  He set his alarm clock to give himself enough time to be ready (he shut it off when it rang and fell back to sleep).  I woke him before I left for an appointment and reminded him of our plans and our agreement.  I let him know I’d be pulling him out of bed if he continued sleeping until it was time to go. He nodded his head – and then continued to sleep until I returned home at 10:25.

I was pretty sure that’s what would happen, and it took a lot of self talk to not go angrily storming into his room.  No. Instead I entered, happily reminding him of our agreement, and pulling him from the bed as we both giggled.

“Pull on some clothes and let’s go.”

All was fine, until Blake realized this was going to mess with his required routine of prayer.  His body seized up.  He stammered over his speech.  His face was red and deeply concerned.

“Umm….I don’t think I can go, Mom.”

Okay.  Breathe.  Don’t yell.  Don’t lecture.

“Blake, we have a agreement.”

“Yes, but I can’t do everything I need to.  I can’t go.  I can’t do it.”

Blake was panicking that he wouldn’t complete all the prayers that he usually does in a day, and he was willing to sacrifice the day we had planned together in order to do them.  I was churning inside.  This was my day too.  I wanted to spend it with him, and now he was going to let this prayer requirement get in the way.  He’d slept his morning away, despite the alarm, despite my waking him twice, and despite all the talk we’d given to how he was going to make this happen today.

I was feeling discarded.  Was the prayer routine going to be more important than our time together?  What to do?  I struggled internally for a bit.  I could leave without him.  The thing is, I’ve done that many times with Blake. It doesn’t phase him.  He doesn’t seem to have any sense of missing out, and he gets the satisfaction of doing his rituals.  Should I insist that he go and fulfill his agreement?

“I’m sorry that you’re in this situation, Blake.  However, you made an agreement with me to be ready at 10:30. That meant dressed, showered, fed and all prayers done.  You chose, instead, to stay in bed.  You lost three hours of time to do all of the things you say are important.  If they are that important, then you would have gotten out of bed.  We are still going – together.”

He wasn’t happy.  He got in the car and argued for the first 10 miles of our drive.  My answer stayed the same.

“Blake, you had the opportunity to do these things, but you slept instead.  You made a commitment to me.  When you are willing to break that commitment over these rituals, it makes me feel unimportant and disrespected.” I did my best to keep it simple – not to lecture or let my temper flare.

He continued to go at me.

“Blake.  You can continue to blame me for the situation you are in – or you can take a look at what you did to contribute to this situation.”

“I am upset with myself.  But I’m mad at you too.”

I was okay with that.  He could be mad at me.  I didn’t try to convince him otherwise.  We didn’t argue about it anymore.  Instead, we had a great day together.  Blake had a few moments of panic while we were out.  I let him have them while I did my own thing.  He quickly re-joined and participated.  He even admitted a couple times that he realized he was panicking – even briefly apologized for his behavior.  In the end, I was glad I’d gotten him out of the house for the day.  I’m sure he found a way to do his rituals while we were out, but I left those up to him and made no comment about them.  Only he can decide if they are worth it or not.

I will keep on this track with him, challenging myself to improve who I am in our interactions.  I think that’s the best I can offer right now.  At the very least, it brings me more peace and it gives Blake more space to have to deal with himself, his thoughts and his rituals.