Do I Maintain His OCD?

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This post is out of my cycle – an extra one for this week since the impending New Year has me feeling contemplative.  For the last several weeks, and especially in the last couple days since Blake’s been home from camp, I’ve been pondering how much my own behavior has to do with Blake’s OCD.  I don’t mean that I “caused” his OCD (I know enough to know people don’t cause another’s OCD) , but I’ve been wondering how much my role in his life has helped to maintain it.

When I talk about helping to maintain his OCD, I’m not really talking about accommodating to it either.  With accommodation, family members, friends and others in the OCD sufferer’s life adjust their own behavior to make things easier on the person with OCD (or maybe just to avoid conflict).  For example, they might wash their hands even when it isn’t necessary just because the sufferer “needs” them to do it. Or maybe they help with checking that all the windows are locked – even though it’s clear that it’s redundant or unnecessary to do so.

What I am talking about is two ways I think I contribute to the vicious cycle we are in.  One way has to do with my own attitude; the other has to do with who I am in my professional life.  Attitude-wise, I think that I am too on edge. While I try not to be accommodating, I am often looking for the OCD behaviors to pop up.  I feel a lot of tension when I see them, knowing that my hands are tied and I cannot intervene. I feel the anger that I know is often in my voice when I talk to Blake.  I know that I come across as being fed up with this whole refusal to work to get better.  I am quick to anger and too ready to set consequences with him.  Heck, the first morning he was back from camp I was already angrily lecturing him about not getting ready to leave for his grandparents’ home on time.  And  I think, because of my attitude, I create too much stress.  Stress in the home is, without a question, not conducive to battling OCD.  It creates an environment in which OCD thrives.

The other way I think I’m maintaining this whole thing has to do with me being a psychologist who treats OCD, and an advocate who speaks about the disorder and works to educate others about it.  When Blake was in a period of doing really well, I was called upon to speak to others about OCD and its treatment.  I did so tentatively, at first.  I wasn’t completely fluid with the material yet, but it felt right.  I felt passionate about it.  I knew what it was like to be a mother, one who was a psychologist no less, who did not know how to help her son. I knew what it was like to watch him scream in terror for half and hour or more and to feel completely helpless to tame the demon that held him in its grasp.  It gave me solace to be able to reach out to others – to teach them what I wish I’d known when my son was suffering.  And each time I presented, I got better and better at it.  For the first time in my life, I truly felt like I was contributing to something important.

It was the same thing with beginning to treat OCD in my psychology practice.  I reluctantly accepted my first referral.  It came from a colleague who knew what we’d been through.  And there are few professionals in our community who are truly trained to treat OCD.  The parent wanted help. The case seemed like something I could wrap my head around.  How could I say, “No?”  So I accepted the family into my practice, stumbling a bit and relying heavily on my reading material.  But the child got better – done with treatment within a few months.  And the next child got better too.  I understood this treatment.  I understood the anguish of the parents, especially the mothers.  I continued to get training and to study this disorder.  I found it all deeply gratifying – more than any work I’d ever done before.

Yet, as I was treating other people’s children, and they were leading lives less dominated by OCD, by own son’s OCD was creeping back in.  As Blake approached adolescence, it was almost as though he had never been in treatment.  Sure, he could use all the terms and he knew everything to do to combat his symptoms. The thing is, he didn’t.  Perhaps he wouldn’t.  He slipped more and more into OCD’s grasp again, prompting us to return to treatment.  But this time, things were different.  Blake paid the therapy team and my husband and I lip service, at best.  At worst, he blamed us all for being the problem.  We left treatment after 9 months – with Blake still refusing to challenge his OCD.  Maybe we should have left sooner, but I wasn’t ready to give up.

So, as Blake continues to deny that OCD affects his life, I am deeply entrenched in working with other children who have it, and educating our community about it.  I can’t help but wonder if that doesn’t give Blake reason to not want to combat his OCD.  Is his refusal to fight for himself his teenage way of standing against something that is important to me?  Is allowing OCD to take up more space in his life some big “EFF YOU” to mom?  Is what I do too close to him and does he need to disengage?  Does he need me to not have the satisfaction of seeing him using that tools that are effective in combating OCD?

I know what I need to do about my attitude. I know that I need to strive to be less tense, more loving, slower to react and more ready to truly allow Blake to be his own person with his own consequences.  And I pray that I find the strength to do that more successfully in this New Year.  The bigger struggle for me is what to do about the fact that my professional life has become about OCD and anxiety.  If who I am and what I do professionally holds my son back from getting healthy, then do I need to change it?  Do I need to pull OCD out of my professional picture even if I feel incredibly passionate about this work?  If so, what about the people with kids who have OCD?  Do I refer them elsewhere?  Perhaps so.  But is that right?  I don’t know that the OCD world would miss this one clinician – I don’t claim to be irreplaceable.  Or maybe I just need to tone down what I share at home.  Keep quiet about my professional work so that Blake doesn’t have to hear about any of it.  But then, am I being honest, hiding the work that I love?

I will continue to grapple with this in the New Year, as right now I’m not certain what the answers are.  The only thing that is clear to me is that I need to do what I can to be less influential in maintaining my son’s disorder.  Wishing you a beautiful and meaningful 2014.

– Angie

“I’ve Been Dealing With Fear My Whole Life”

An alpaca at camp. Look after my boy, buddy.

This holiday season, our family is spread all over the place.  Blake was the first to leave, heading off to a camp he’s been wanting to attend.  The hubby and Michael then left for a community service trip in Central America.  And here I am, writing as I get ready to spend some time with my mom, sister and sister-in-law.  While I miss everyone, I think the break is good for us all.

The morning Blake was to leave, my husband started to have separation anxiety.  He started to worry about how Blake was feeling and how he would do at camp.  He has never gone off on his own before.  He was not going with a friend, and he tends to be the kid who is on the periphery, often not really fitting in.

“I hope they’re nice to our little guy,” my husband said to me, his lower lip protruding.  “I’m going to go talk to him.”

Blake is not really little anymore, but he is our youngest, and we have definitely protected him quite a bit.  I was having pangs of anxiety for him myself.  Would the other kids be nice?  Would Blake join the group, or hang out alone, lost in his thoughts?  Would he be homesick and try to come home early?  Would I be facing calls from the Camp Director sharing the woes my son was facing?

The hubby returned a bit later with a smile on his face.

“That kid is really amazing sometimes,” he declared.  “I asked him if he was nervous and he wondered why I was asking.  I told him that this is something new and sometimes new things make us nervous.  I even told him that I’m nervous about my own trip.  I don’t know what the village will be like, or the people.  I don’t know what kind of food they will be serving me or if I’ll like it.”

“So what did he say?” I wondered.

“He said, ‘Dad, I’ve been dealing with fear my whole life.  I’m used to this.  If you’re really worried about what’s going to happen, just allow yourself to think the bad thoughts.  If you’re afraid they’re going to feed you something awful, then imagine that.  Like snails – imagine they feed you snails.  Think that thought over and over.  It’ll become boring and it won’t bother you anymore.’ ”

“That kid.  He completely ‘gets’ how to deal with anxiety.  Imagine where he’d be with his OCD if he wasn’t so intent on proving us wrong.”

“Yep.”

So, Blake schooled Dad on dealing with anxiety.  And then, he and I drove the hour-plus trip to camp.  After a health check and some initial introductions, I was told to be on my way.  Blake was already cracking jokes with his counselor when I left.  As I walked back to the car, I took one look back. A tear worked its way from my eye as my throat tightened.  I left full of hope that Blake will find a measure of peace during his time away.  I hope we all do.

“Can’t We Put Him In A Hospital?”

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Blake, Michael and I are sitting at the dinner table.  Blake is fishing in his minestrone soup, a dish I prepare that had still been in his “safe” zone.  Although I stopped preparing meals for Blake a little while back, he is still welcome to help himself to something I have prepared if there is enough.

Blake loves my minestrone soup, but tonight, something is wrong.  His body stiffens as it usually does when he realizes there’s a rule “violation” – a moment of panic.  I’ve added something different to the soup this time.  That’s not unusual; it’s a very versatile recipe and Blake has always rolled with the variations.  Sometimes I add some spinach.  Sometimes a bunch of chard.  Tonight, some broccoli seemed in order.  Broccoli, however, apparently is in the “No Zone.”

Michael is watching Blake attempt to salvage his soup.  Blake picks bits of broccoli out of the soup, placing them on the napkin next to his bowl.  He is clearly not happy, but not yet ready to abandon one of his favorite dishes.  I’m churning inside, but I try to focus on my own meal and say nothing.  Michael is getting angry and he cannot keep it under wraps.

“What’s the problem with the broccoli.  Explain this to me.”

“There’s just a problem with it, okay?”

“No.  It’s not okay.  Why do you have to listen to your OCD?  Why can’t you not waste food?  Can’t you break the rules for once?”

“It’s NOT about OCD.”

“Yes, it is!  Can’t you just admit that for once?”

“Hey, guys,” I break in, “can we not do this at dinner?”

“If we don’t do this now, then when CAN we do it?” Michael asks.  “I want to talk about this now.  This is my dinner, too.”

I pick up my bowl and my placemat and I walk into the dining room.  I’m frustrated, too, and I hurt inside because I am once again reminded that I cannot feed my son. I am incapable of even providing his basic daily sustenance.  I don’t want a dinner that’s full of arguing.  I don’t want to sit through yet another meal that is full of fighting and anger.  If Michael is going to insist on this battle, I don’t want to be a part of it.

I can hear them continuing to argue.  Blake defends his position.  Michael tells him why he is wrong.  Finally, I hear one of the boys get up.  I hear the door to the cabinet where the trash is slam, and then I hear the refrigerator door shutting.

“Are you really going to throw that away?” I hear Michael asking angrily.  “Because, if you are, maybe I’d like to eat it?”

And then – silence.

I get back up from the dining room table and make my way back to the kitchen. Michael is still at the table eating.  Blake is sitting on the sofa reading a book.  He apparently never got a bite of food into his mouth.  I sit down and we eat our dinner.  The silence envelops us.

A Walk Will Do Us Some Good

After we clean up, I ask Michael to walk the dogs with me.  Once we are outside, I acknowledge how strong his feelings are.  I understand; I’m full of emotion myself.

“Mom, he wastes perfectly good food.  He’s sick.  Can’t we put him in a hospital somewhere?”

I hear Michael out.  I help him to stay focused on his own feelings instead of having him point the finger at his brother.  Finally, I’m able to point out the futility of bombarding his brother at the dinner table.

“But I am so tired of having to sit with him at the table and watch him refuse to eat the food – or pick at it like there’s something wrong with it.  I’m tired of having my dinner ruined by his OCD!”

“So, is attacking him making your dinner any better?” I ask.

“No,” he admits, sounding defeated.  “I know I’m over the top.  But I want to yell.  I want to get it out.  I want him to hear how this makes me feel.  I want to be angry. And you won’t engage in it.  You leave the table.”

“Michael, you have every right to share how you feel with your brother, but is doing it over your evening meal the best place?  I have no problem with you sharing how you are affected.  I just don’t want to hear it over dinner.  I don’t think it helps.  It just puts him on the defensive.  Don’t you think it kills me to watch him picking over the food I prepare, or throwing it away?  Bringing it up in an accusatory way at that moment accomplishes nothing.”

He Needs to Feel the Consequences

Michael has shared what he needs to.  He is silent for a moment, then he looks at me with a determined expression.

“Mom, he needs to feel the consequences of his behavior.  I won’t argue anymore.  If he has to eat frozen pita and cheese every day for months, then we have to let him do that.”

I agree with Michael.  It’s actually what we’ve been talking about needing to happen for a long time, but Michael needed to actually feel this for himself.   I let him know that his dad and I welcome him to come to us about this any time he needs to vent.  We get it.  This OCD behavior affects us all in some way.

It is not easy to be the sibling of someone with OCD.  It is painful to watch the futility of rituals performed day after day.  It is difficult to see someone you love caught up in something that has no reason to you.  It is probably even more difficult when that sibling denies that there is a problem, leaving virtually nothing to work from.

Michael and Blake have an incredible bond and Michael cannot understand why he is unable to break through and get his brother to care enough to get better.  He feels his brother slipping away from him sometimes and he tries to pull him back. Sometimes, he feels he’s losing his grip.  That’s when the desperation comes out.  On this night, though, I believe he realized that, in order to save his brother, he will have to help himself first – as painful as that may be.

Take The Antacid!

This morning, as we left for school, I noticed that Blake seemed uncomfortable.  He sat in the back seat of the car.  I could feel him squirming, like he was trying hard to bear some pain.

“Blake, are you feeling okay?”

“Heartburn,” he noted.

Heartburn is not unusual for Blake – at least lately.  He’s had it several times over the past month.  I’m not sure if it’s due to his strange eating habits or if something else is up.  We may need to take a trip to the doctor if it keeps up.

“Do you want me to head back home so you can get some antacid?”   A couple of antacid tablets generally does the trick for him.

“No, Mom, I think I can get through this one.”

We drove on.  Soon enough, I started to hear him groan.

“Ouch.  Ouch.”

We pulled into the parking lot at school.

“Are you sure you’re going to be okay?” I asked.

“If I don’t feel better, I’ll see if Connie has a pill she can give me.”

Connie is the school nurse.  Did I mention that Blake is on a first name basis with her?  Children with anxiety disorders often get to know their school nurse well – but I’ll bet you already knew that.

“Connie can’t give you any pills, honey.  The school isn’t allowed to give you anything like that.  They’ll just call me back to school to give you something.  If you need some antacid, we can go the to grocery store down the street and get some right now.”

The Truth Comes Out

“Do they have pills instead of the chewable tablets?” he asked.

“Blake, what’s this about?”

“Oww.  Ouch.  I don’t want to eat any food.  I’m fasting today.”

Yes, he’s fasting again on this day.  It’s another religious fast day that I’ve never heard of before.  That doesn’t matter, though; when you’re sick, you take medication.  Physical and emotional health come before the need to fast.

“Blake, antacid tablets aren’t food.  They are a vehicle to deliver medication you need to feel better.  The point isn’t for you to suffer all day.”

Blake knows this, intellectually, but his black-and-white, OCD thinking tells him that if you chew your medication it is just like eating.  Then, he would be breaking a religious rule.

“I don’t know. Let me think about it.  Ouch! Ow!”  His groans and cries grew louder.  The heartburn became worse.

We sat in the school parking lot for a few moments.

“Ouch!!!  Okay! Okay! Let’s go to the grocery store.”

I pulled into the parking lot a few minutes later.

“I’ll be right back,” I told him.

“Try to find it in pill form!” he called out in between groans.

Take the Antacid!

I returned a few minutes later, antacid in hand.  Blake was doubled over in the back seat.  He looked up at the bottle.  It was chewable tablets, like always.

“I’m just not sure about this.  Ow!  Ow!”

“Blake – take the antacid!” I commanded.

“Okay!”

It seemed I could not open the bottle fast enough for him.  He took two tablets into his hand and mumbled a prayer to himself just before he popped them into his mouth.  I wondered if he was praying for forgiveness for this perceived transgression.  He sat quietly for  moment, allowing the calcium carbonate to make it’s way to his burning pain.

“I don’t feel very good about doing this,” he finally said.

“You did the right thing,” I told him.  “Your health always comes first.”

“I just don’t know.”

Blake never did make it into school for the day.  We sat in the car for a while, but the pain from the heartburn did not abate.  He went inside and saw his teacher and then we checked him out of school through the health office.  He laid at home on the couch until the pain finally grew almost imperceptible.

I left for a couple hours to meet a friend.  Blake continued to be plagued by the thought that he had broken a religious rule in taking those antacid tablets.  While I was away, the thoughts would give him no respite.  He picked up the phone and called my brother-in-law for reassurance.  My sister-in-law returned his call.

“You did the right thing,” she told him, and he shared this information with me upon my return.

“Hmmm…” I remarked.  “Isn’t that interesting.”

I know that Blake already “knows” that it is okay, in fact even important, to put his health ahead of perfect religious observance.  It is his OCD that causes him to doubt and worry. It used to be enough for me to tell him that it was okay to do this or that.  Then he had to start checking with my brother-in-law (who is more religiously knowledgeable).  Now, even that does not completely calm his mind.

I wonder if we all need to put it back onto Blake, simply ask what he thinks is right and allow him to struggle with the issue.  Reassurance is like a drug to OCD, providing brief relief from worry, but growing in its craving as time goes on.  It’s a messy business when dealing with religion because, on the one hand, he does need direction, but on the other, it becomes all tangled up with OCD.  It takes some savvy to pull the two apart.

In this case, it was more about OCD than Blake needing real direction.  It was about needing reassurance about something he already knew.  Time to put heads together with the family again, and find ways to remove ourselves from the cycle.

OCD Affects School

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For a very long time, Blake has been able to function in school without his OCD being noticed.  He’s in the ninth grade now, and I believe that most of his teachers from 6th grade on have been surprised to learn that he has OCD.  That is due, in good part, to Blake having done a terrific job in battling the disorder before then.  Even as symptoms started to creep back in, they mostly occurred outside of school.

Then came last summer, when Blake’s fighting over treatment and constant insistence that everyone else had a problem (not him), led my husband, myself, and his treatment team agree to stop treatment.  If he was going to fight, refuse and point at others, perhaps he should get what he was asking for – to manage his own life and his own OCD.  Thus began our current chapter, where it is up to Blake to ask for help if he wants it.  So far, he wants none, and his OCD goes along on its path, undisturbed by others.

Yesterday, however, I received an e-mail from the resource specialist at Blake’s school.  He was following up on a concern from the math teacher.  Blake has been leaving class frequently to wash his hands.  It has been so noticeable to the teacher that he reached out to the resource specialist for help, even texting him for assistance in the middle of class yesterday.  Blake was repeatedly leaving the room and the teacher did not know what to do.

The Resource Specialist Responds

The resource specialist responded right away, checking in with Blake to see if something was up with math.  That’s when he saw the state Blake’s hands are in – chapped, scabbed, raw and oozing in places – and he asked about that, as well.  Blake noted that nothing was wrong with math at all, and his hands, well he was just washing them a lot because they are dry.  So the resource specialist responded as any caring adult would.  He advised Blake that hand washing would only make his hands worse, and he suggested Blake get a good bottle of lotion and carry it with him at school.  Blake had reasons why this was not a good idea for him.  The resource specialist let Blake know he is there for him.  And then he went to his office and wrote to me to ask my thoughts.

My thoughts…..

One of the things I love about Blake’s school is that the staff care about each student as an individual and that they are thoughtful about how to approach a student’s issues.I called the resource specialist.  He picked up right away.  We talked for a while about what’s going on at school, and about what is happening at home.

I let him know that Blake was not being honest with him.  He talks several times a week about how he is struggling in math.  Of course it is stressing him out.  We’ve discussed ways he can get assistance with the areas he is struggling with.  We’ve even talked about going to the resource specialist.  I also explained that Blake does not see his OCD as a problem for him.  We’ve been waiting for him to feel the consequences of not taking care of himself.  Maybe this situation was an opportunity for him to begin to feel the repercussions.

A Plan Is Born

“Is his math performance suffering?” I asked.

“I surveyed the staff and he’s doing stellar in his classes, except math. Yes, it is affecting his performance.”

“I’m thinking maybe it’s time for him to hear that his behavior is having consequences for school.  If he hears it from me, or if I attend a meeting, he’s likely to put it all on me.  I think maybe he needs to hear it from you and Mr. C. (the math teacher).”

We talked about it for a bit and decided that the resource specialist and the math teacher will call Blake in for a meeting.  They will simply tell him that his leaving the class as much as he is, is negatively affecting his grade in class.  They will work with him to problem solve ways he can decrease the number of times he leaves class, and eventually eliminate this behavior altogether.  If Blake works with them, they will work with him.  If he is unwilling to change his behavior, math will continue to suffer and his grade will reflect that.

“I know you well enough to trust you guys will handle this with kindness and care,” I tell the resource specialist.

“We will,” he tells me.

“Just drop me a note or call me to give me a ‘heads up’ that this meeting has occurred.”

So, I wait to hear when the meeting happens and to observe what will come of it.  I think it is positive that Blake will finally be hearing from others who are not members of his family that his OCD is creating some issues.  I also think that it is positive that he will be challenged to address the issue.  Whether he decides to proceed positively or whether he disregards the meeting, it will be one more piece of information stacking up to demonstrate that something may need to change.  I’m hoping for the day when enough information piles up and sends Blake moving toward a life less bound by OCD’s grasp.