It’s been a month and a half since I last posted. It’s been a busy seven weeks. There was the annual OCD conference in Washington, DC, and a family vacation – and then there was getting Blake ready for college and moving him in. Yes, you read that right, Blake has gone off to college.
In my last post, I shared how Blake had begun to take steps on his own initiative to leave the house and do activities: a trip to the game store, an outing for coffee. It was surprising to us, and he continued to do it. The hubby, Michael, and I were all proud of him, though we tried not to make a big deal out of it. Making a big deal of things with Blake tends to backfire.
Last week, the hubby and I flew with Blake to the Pacific Northwest and helped him settle into an off campus apartment with three other young men. It was an emotional experience for us all – each for different reasons. For the hubby, it was about watching his youngest leave home; for me, it was a mixture of sadness at seeing Blake leave home, happiness that he loved his newfound independence, and fear that I will receive endless texts about how unhappy my son is or, worse, no texts because he just doesn’t get out of bed and is only awake in the wee hours. Blake felt a calm satisfaction at having his own space and making his own hours with no one looking over his shoulder, yet the specter of school weighed heavy on him as he hung his head sadly and declared, “I’ve never ever liked school. This is going to be the shortest college career in family history.”
Returning home was a strange affair. Our house feels incredibly empty. Blake was ever present on the family room couch. The hubby and I have new routines to establish, as well as the process of getting to know one another again with no offspring in the home.
How things will go for Blake is a big question mark. He’s texted once since we left him three days ago (well, actually twice – the first time being to tell us he got out of bed and went to orientation). He wanted to say “Hi” and tell us that all was well. I’m trying to give him a little space to make his own way. His therapist advised him to be aware that OCD symptoms can creep up on one when going through a new transition; depression symptoms can, as well. Blake prefers not to think about that. My guess is that this has to be exciting and scary at once for him. Let’s see what happens. I’ll keep you posted.
It’s a Sunday afternoon and Blake is taking a computer scored test for his precalculus class. He’s never liked math, yet he has continued to push himself forward because he knows at least this much math is required for him to pursue his career goal of video game developer. The tension is palpable in the family room air. Twenty problems. Three points each. The anxiety mounted when he looked at the first problem.
“I can’t do this! I don’t understand it!”
“Blake. Yes you can, and yes you do. Slow down.”
Is That Obsessive-Compulsive Disorder?
The hubby and I keep repeating this mantra, but Blake is not hearing it. He’s far too anxious. Yes, Blake has OCD and while you may be wondering how this is an OCD moment, suffice it to say that OCD often does not occur in a vacuum. OCD sufferers can have many other things going on besides OCD (just as we all can have multiple things going on in our lives). One very common occurrence is to have anxiety (possibly even an anxiety disorder) pop up in areas besides those affected by the OCD.
When a person has OCD, they struggle to deal with the uncertainty, discomfort, and anxiety brought on by intrusive thoughts, urges, or images. It is the discomfort that is created that OCD sufferers must learn to deal with. So, it’s not surprising that other things that make an OCD sufferer anxious can also be a challenge. In Blake’s case, math provokes anxiety. I don’t know if it’s a full blown phobia, but math anxiety is a regular occurrence in his life.
How’d You Get on Number 16?
I walk over to Blake and glance over his shoulder. He’s on number 12 out of 20.
“I’m not going to pass,” he says with panic in his voice. “It’s hopeless.”
“Hey, you can do this. This is your anxiety talking.”
“No! No! I just don’t understand it!”
I glance at the computer. He’s on number 16. This doesn’t make sense. We’ve been talking. He hasn’t even more than glanced at the computer screen. He couldn’t have completed four precalculus problems.
“Blake, how’d you get on number 16? You were just on number 12.”
“I can’t do it,” he just keeps saying.
“Blake, did you enter nonsense answers?”
“I’m not going to pass! It doesn’t matter what I enter!”
The hubby manages to intervene and to convince Blake to take his hands off the keyboard. We talk for a few moments and Blake settles down. He refocuses on the task at hand and answers numbers 16-20 correctly. He earns a forty percent. When he’s finished, I take a look at the analysis that shows what he scored correctly on and what he missed. He got three answers correct in the first five questions and then nothing correct until number 16. He’d gotten anxious because he’d gotten a few wrong. Anxiety took over, he panicked, and there went the test.
What Have You Learned From This Experience?
Blake had to contact his teacher about his score because a minimum sixty percent is required for him to continue on in the course. The hubby and I write a note to the teacher and advise her of what happened. We let her know that we hope Blake learns a lesson from this experience and that he will not do this in the future.
“What have you learned from this experience?” I ask Blake later.
“I learned to slow down and take a break if I need to. I also learned that Mom and Dad are usually right.”
As a mom I smile at that last comment – not that he’ll recall it when we have advice to give.
Blake’s teacher writes me back the next day. She asks for Blake to come in and work with her. She wants to see what he needs help with, and then to reset the test – something we hadn’t asked for nor expected. After she works with him, she asks me to come by.
“He understands all of this. He did remarkably well. Let’s see how he does on the re-take.”
Blake takes the test again and scores an eighty-five percent.
“I have pretty amazing teachers,” Blake tells me.
“Yes, you do,” I reply. “Mrs. C didn’t need to reset that test. She understands anxiety. I wouldn’t expect her to do that again.”
Blake understands that responding to his anxiety by completely throwing off his test was not the best choice. He does seem to have learned something from it, but, honestly, only time will tell. Will he step back and recognize what anxiety is doing to him the next time it surfaces? I hope so. Or it may be a lesson he will have to learn repeatedly before he gets it down. I am confident that he will get it some day.
I found this piece of writing the other day. It is something I wrote for myself about two years ago – before I started writing this blog. It reflects the feelings I felt at seeing my son stuck in an OCD ritual, and my struggles with a public who often does not understand that OCD can wreak havoc on lives.
“Good morning!” I say in my most cheery voice as I open the car door and a load of kids tumbles out. I’m working at morning valet at my son’s school, a volunteer position I’ve helped with for the past four years. “Have a great day!” I wish them as they enter school for the day. Across the parking lot, I catch sight of my own son, standing by my car. I can make out the brown curls on the top of his head, which is bowed in prayer. I check my watch – 20 minutes have passed since he began this process. Twenty minutes on a prayer that reasonably ought to take less than five. I can see him repeating the same motions he’s done over and over already. I even think I can see him mouthing the same words.
“Enough already,” I think to myself and begin to walk in his direction.
“Be right back,” I tell my fellow volunteers as I leave my post. When I get to him, he doesn’t acknowledge me. He’s deeply, fervently in prayer.
“Hon,” I ask, “can I help in some way?”
Absolutely no reply. His lips move at rapid-fire pace and he’s planted in place. I put my hand on his shoulder.
“It’s time to go in to school now,” I tell him.
“Mom! I was almost finished! Now I have to start it all over!”
“Honey, you’ve been saying the same prayer over and over for the last 20 minutes. It’s enough. Go join your friends before school starts.”
“I have NOT been saying it over and over. I keep messing up or skipping parts so I have to start again and get it right. I almost had it this time and you interrupted.”
“I don’t think the point is to get it perfectly right. I think it’s about what’s in your heart. You-know-who is just trying to trick you.”
I say this last part in reference to his OCD, which we’ve known he’s had since he was 7. He is nearly 14 now.
“Really? Do you think so?” he says sounding just a little bit hopeful.
“You know that’s the truth. Come on, you can fight this.”
“No, no, no. I have to get it right,” he says. “Just let me do what I have to do.”
“Come on, honey. Stop and go to class.”
“Fine! It’s your OCD. You handle it the way you see fit.”
I throw my arms up in exasperation as I walk back to the waiting line of cars. He goes back to his prayers, trying to finish before he is tardy to class. My heart is heavy as I watch him being caught up in this cycle…trying to get it just perfect and falling short over and over again. I want to make this better for him, want him to be able to go hang with his buddies who are all together before school begins, but I am just an interruption to a process he feels he must go through.
Not long ago I saw a segment of an interview of Howie Mandel by Larry King. Larry was asking Howie about his OCD. At one point Larry looked at Howie and asked, “It’s not a severe mental illness, is it? I mean, it’s not depression.” Larry went on to talk about how we all have a little OCD and how he has all his vitamins and medicine lined up in a certain order and takes them in that order. Howie did his best to explain how OCD can severely impact someone’s life, but I never really felt that the point hit home.
I think Larry’s question reflects what we see in the media about OCD. People with OCD are portrayed as quirky, silly, and super organized. Maybe they are controlling and bothersome. What we miss seeing is the anguish and the suffering. We do not understand how OCD can hold an individual – and entire families – hostage to it. If we can ask the question, “It’s not a severe mental illness, is it?” then we have never witnessed a child with hands so bloody and oozing from over-washing that they wince with pain if anything brushes against them. We have not had a family hike interrupted by the un-ending screams of a child who is certain he is about to die because there may have been a Lyme disease carrying tick on the shrub that brushed up against him. We have never had a sheriff’s deputy come over to us in alarm because our child is screaming so horrifically that they sound like they are being torn limb from limb. We have never had a family meal interrupted over and over because our teenage son has to stop eating to repeat a ritual before he can go on eating. And we have never seen a 13-year-old boy reduced to an exhausted crumpled mass in his mother’s arms after fighting off the demon in his own mind.
“It’s not a severe mental illness, is it?”
Yes, sadly, OCD is a severe mental illness, and it attacks the things that are most precious to a person. People think our family must be very religious because they see our son in prayer all the time. What they do not realize is that the religion our son practices bears little resemblance to any religion we practice in the home – or that anyone practices anywhere for that matter. His practices are born out of a fear that OCD gives him – a fear that something awful will happen if he doesn’t get things just right. What used to be a source of enjoyment, connection and deep meaning for him – and for us all – has become a source of endless doubt and a cycle of torturous repetition that has long lost its original intent.
Yes, there is treatment. There are terrific, highly effective treatments – and my son is in treatment now. He has beaten OCD to a pulp in the past. With this relapse, he is a teenager, in the throes of puberty and determined to be independent of what Mom and Dad want for him. So we wait, with hope that the day will come that he will decide that he loves himself more than he loves fighting us. We wait for the day that he turns his strong-willed nature against the OCD that currently holds him in its grasp and moves toward a freer life. But it’s going to be one heck of a war when it comes because, yes, OCD can be severe – and it grows in strength over time. In the meantime, our family will be here, honing our skills so that we can back this boy up when he is ready to fight.
Blake had a milestone event of sorts just a little over a week ago. He left the school that has been his home for the last five and a half years. It is a local charter school that we chose to enroll him in when he began the fifth grade. Back then we could see the writing on the wall – the local junior high school and Blake would not be a good match. A project-based learning charter school seemed a much better way to go for our bright, anxious boy. He could have remained there through high school graduation, and we all imagined that he would. Yet Blake’s growing religious observance clashed with the secular atmosphere. He asked us for over a year to allow him to move into a home study program, until we finally agreed, but was it the right move?
Blake began the journey toward becoming more religious about three and a half years ago. He started small, a little change here and there. At the time, he had been managing his OCD incredibly well. We barely saw any sign of it, and we would rejoice when he made choices to do the opposite of what OCD told him to do.
Then, things changed. Blake’s OCD made a strong comeback. He knew what to do and he reached out to his therapist to coach him. Yet, despite making regular plans of action, Blake didn’t follow through. He gave in to his anxiety. His compulsions around his contamination fears grew, but OCD wasn’t done there. It found Blake’s newly growing interest in religious observance the perfect area to attack. Blake was already uncertain about whether he was practicing his religion correctly, and his OCD dug right in.
“Maybe you didn’t say that prayer right. You should say it again,” OCD would taunt him.
“You may have just done something to offend something sacred. You’d better undo it.”
Religion and OCD became entangled and it became difficult to tell one from the other, at least for those of us at home. To people on the outside, Blake just looks like young man of “a deep and reverent faith” to quote one of his teachers. When people learn that Blake is more observant than the rest of the family, my husband and I often receive praise for being so supportive of our son. I received much positive feedback as Blake wound down his final week of school, but I felt like a sham. I am not who these people think I am.
For the last five and a half years, Blake has been nurtured by educators who have strived to understand his OCD. He has been welcomed by resource specialists who’ve listened patiently to his anxious moments. He has kept warm company with the health office attendant – sometimes for hours on end and for days in a row. Never once has anyone suggested that this young man, initially unable to even sit in a classroom, didn’t belong at that school. No one ever tried to send him home like they did at his former school, because he was wearing the nurse down. No one called home or sent him to the principal because his repetition of prayer sent him late to his first period yet again. They accepted him as he is. And they told me that I am a good mother for supporting his growing religious needs.
So, why do I feel like a sham? Because deep inside, I’m not sure if this is really religious observance. Sure, it looks like it on the surface, but it’s still too tangled up with OCD’s need for a black and white design for living for me to know if it’s genuine, or if it’s OCD. Did I just pull my son out of one of the most wonderful and nurturing experiences in his life in the service of his OCD? Or did he really grow into a religious young man with different needs? I don’t know if we made the right decision. I don’t know if I gave in because I was tired of fighting, or because it really was time for Blake to go in a new direction. All I know is that I am uncertain right now, and I miss the home that was my home, too.
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.
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.
I’m parked in front of Blake’s high school waiting for the kids to be dismissed and I’m talking on my phone to a friend whose son just finished military boot camp. She is jubilant about how well he is doing. As we talk, most of the kids stream out of school. I haven’t seen Blake yet, which is working out well, since my friend has so much to share. Finally, I see him head out of the building and toward the car. As he gets closer, I can see that his face is blotchy red from crying. I wait for my friend to pause for a breath in her story and I abruptly tell her that I’ve got to go.
“Hi Blake. What’s going on, sweetheart? You look like you’ve been crying.”
“I stayed after to talk to Mr. S,” he says.
A silent alarm goes off in my brain. Mr. S is the history teacher I mentioned in my post “OCD and Misdiagnosis.” He’s the one who thought Blake might be autistic. I try not to sound overly worried.
“Oh, what about?” I ask.
“I finally went to him to talk about the problems I’ve been having with my friends.”
I wonder what the teacher’s response was. I have mentioned before that Blake is struggling socially at school. To make matters worse, the guys who are supposed to be his friends have been telling him to “shut up” or to “go away,” and they’ve been talking in front of him about a laser tag birthday party they are all going to that he was clearly not invited to. To be fair to these kids, it could be that they are just being teenage boys. To Blake, however, it makes no sense to tell someone who is your friend to “shut up,” even if it’s just in jest, and especially if that person keeps asking you to stop.
“So, what did he say?” I ask him.
“He said he’s going to help me.”
“So, how come you were crying? Did he say something that made you cry? Did he say something that made you feel at fault for what’s going on?” The Momma Bear in me is showing. I don’t want anybody saying anything hurtful to my son.
“I really want to keep it just between me and Mr. S for right now, Mom. What he said…it made me feel supported.”
The tears stream down his face as he says this to me and I realize that my son has felt touched by this teacher’s show of support for him. He feels accepted.
Dr. Tamar Chansky, author of “Freeing Your Child From Obsessive-Compulsive Disorder,” says, “It takes just one understanding teacher to make it possible for a child struggling with OCD to feel understood. That sense of safety and acceptance can make the difference between a child attending and thriving at school, or not.”
While Blake’s particular issue may not have directly been about OCD, OCD is part of the reason he struggles socially. It makes him distracted and sometimes, when he’s caught up in a ritual, it makes him look like the weird kid.
In keeping with the November and Thanksgiving spirit, I give thanks for Mr. S. Thank you, Mr. S, for being one of those understanding teachers. You made a difference for my boy, and I’m sure you make a difference for many more.
The history teacher is sitting across the table, kitty-corner from me. He has a look on his face I’ve seen before. He has something trying to push its way out of his mouth, but he’s biting his tongue, trying to keep it from reaching my ears. I take the reins.
“Go ahead,” I tell him. “There’s something you want to say to me. I can take it.”
We are sitting in Blake’s annual IEP meeting (that’s an Individual Education Plan for those who don’t know the special education lingo). It’s a matter of formality this year; just a re-setting of goals. Blake has had special education services since he was in first grade, but it’s not because of his OCD. It’s actually because of some other issues he has. Really the only remaining issues have to do with sensory issues that make it a little tough for him to write and to organize. Of course, the OCD usually comes up because it affects school.
Right now, though, we’re waiting for Blake to arrive at the meeting. While the reviews of Blake as a student and citizen are stellar, he is struggling socially. I know this. I’m the one who brought it up. The history teacher seems to really adore Blake, but something about his social interactions with the other students is bothering him. He’s trying to tell me what’s been itching at him about my son, and he is afraid to say it. Even though I’ve invited him to tell me what it is, I can still see he’s struggling. I’m pretty sure I know what he’s holding back.
“There have been teachers who have thought Blake was autistic,” I say.
“That’s it!” he jumps in. “He feels like he might be autistic. Like he doesn’t understand some of the social conventions. He does great with me, but with the other kids…”
“I know it’s in the records, but I’m guessing that the information hasn’t gotten to this year’s teachers yet. Blake has OCD. He’s not autistic.”
We are 2 months into this school year and Blake has a whole new group of teachers. His last group followed him for a while and knew his history. Somehow, the information hasn’t been passed on.
“OCD? I didn’t know he had OCD.”
The principal nods. He didn’t know either. Blake has just made the move from middle school to high school. Same campus, but everyone except the resource specialist is new to him. They haven’t read his file. They have lots of students to think about. This is my chance to educate.
“Do you know much about OCD?” I try to ask this gently because I don’t want to offend the teacher and principal. I want to bring them to Blake’s team. They let me know that they know very little.
Children and teens with OCD are often misdiagnosed. Anxiety and OCD, in particular, can mimic many things. A child who is distracted by intrusive thoughts and mental rituals can look like they have an Attention Deficit Hyperactivity Disorder. A teen who does not follow directions because they interfere with a ritual looks like they are Oppositional Defiant. A young man who is distracted because he is wondering if he said his prayers right and misses social opportunities because he’s off performing a ritual has a tough time socializing with other kids.
“When a child has OCD, they are bothered by thoughts in their own heads. They miss out on social cues and opportunities to interact. Blake is struggling a lot with intrusive thoughts about whether he is a good person. He’s constantly evaluating himself and having to perform rituals to ensure he is not morally wrong. I know you all don’t remember when he first started at this school, but he was afraid that all the other kids were contaminated and that being near them would contaminate him. He couldn’t get near anybody and he could barely complete any work.”
The teacher and principal look shocked. They had no idea.
“Blake’s made a lot of progress. From what you’re saying, he is on top of all his work now – and doing it really well. But it also sounds like he still needs help to join the group. I know he missed out on some of that social learning.”
The teacher promises to help Blake with the social issues. I silently wonder if it’s time for an in-service training on OCD and anxiety like the teachers received when Blake first began at this school several years ago. It has been nearly eight years since a teacher last told me they thought Blake was autistic. But I know that this happens with children with OCD every day in schools all over the United States and the world. OCD hides – and many of its sufferers, whether child or adult, are reluctant to share what they believe are their strange ways of thinking and behaving. So they are misunderstood, mislabeled and they go without treatment.
I am sad that my boy is having a hard time socially and I hope that we can find a way to help him with this. At the same time, I am grateful that we understand that he has OCD. It is infinitely better than working with a label that just doesn’t fit.