“Nobody Understands”

Image courtesy of thepathtraveler at FreeDigitalPhotos.net

I’m talking to my mother-in-law on the telephone.  Bless her, she is so concerned about what we are going through with Blake.  She is also trying so hard to figure out how she can help.  She reads this blog religiously.  She’s probably reading it right now.  At any rate, she’s just spent several days with Blake and she’s anguishing over what she’s seen.  It pains her to see the never-ending OCD cycle play out in his religious practice.

“Nobody understands, though,” she tells me.  “He’s so charming, so bright, and so polite that people don’t see what’s going on.”

She relates to me how she tried to share what is going on with some friends of hers who know Blake. She explained to them the relentless repeating of prayers and the way that OCD becomes intertwined with religion – until it’s nearly impossible to tell where one begins and the other ends.  She poured out her anguish to them.

“I wish I had a son who was religious,” was the reply she received.  She was so surprised, so disheartened.  How could they fail to see that his religious practice is not a pleasure, but a source of daily torture?  She had just explained that religion had been overshadowed by OCD.  Didn’t they hear her?  She felt alone, and I felt for her.  We are in this together.

I regularly find it difficult to explain to others that, while my son appears to be a religious young man and that, yes, it is nice to see a young man honor his religion, that his practice is convoluted.  It is polluted.  What they cannot see is the ugly side of his practice.  They cannot see my child repeating prayers he has already said – over and over – lest he offend his Creator.  They cannot see the hours he spends pouring over information on the internet and trying to discover how bad the sin he believes he has committed really is.  They do not see the washing machine that is frequently filled with sheets that must be washed because some wretched unreligious thing has happened in them. They do not see him sleeping on the floor instead of in bed because of his sin.  They do not watch him fast for entire days over and over again so that he can redeem himself.  They do not listen to him sobbing for hours on end because he believes he has sinned and cannot be redeemed. Nor do they see my husband and I going to him over and over during those hours, begging him to tell us what is wrong, only to have him say he needs to be alone as he continues to cry.

This is not religion as I know it.  This is not something to be grateful for.  This is sadness.  This is pain.  The G-d I know does not make us pay so dearly for being close to Him.  For me, true spirituality involves being uplifted, feeling a greater sense of belonging and of purpose.  This is lost on my boy.

My husband and I are feeling like we can’t just do nothing.  We have an appointment with a religious leader next week – someone who has offered to hear our story and see if he can help.  What he can offer that others haven’t, I’m not quite sure, but we are hoping he can help us find a religious mentor for Blake.  Perhaps someone who can guide him spiritually, while separating out the OCD madness.  Maybe this will help.  Maybe.  As always, I have to hold out hope.  It’s what I cling to – hope.  I’ve still got it.  I refuse to fall into despair.  There is always hope.

“I Just Don’t Trust Myself!”

Many of us who live with a loved one who has OCD have heard this familiar refrain.  It doesn’t really matter what it is about; it could be one not trusting their own eyes that their homework is in their backpack, or whether the knob on the stove is really in the “Off” position.  OCD has a nasty way of making its victims regularly doubt themselves.

“I just don’t trust myself!”  Blake uttered in defeat one morning this week.  This had followed an excruciating morning of trying to choose a simple something – anything – to eat for breakfast.  He just couldn’t do it.  He stared deeply into the refrigerator.  His angst was palpable.  I could see the wheels churning furiously in his brain.  What can I possibly eat that will be acceptable?

Blake has lots of food rules and restrictions, yet he usually finds something to eat in a relatively quick period of time.  On this particular morning, he had just come home the evening before from a two-day visit with his aunt, uncle and cousins.  I’ve written before that Blake views his aunt and uncle’s home as a more ideal place for him.  In many ways, this might be true.  In any case, he came home happier than usual, lighter, more chatty.  The sense of tension that usually accompanies our interactions with him were absent.  It was a pleasure to spend time with him.  All that came to an abrupt halt when the prospect of choosing breakfast foods loomed ahead of him.

Facing the prospect of being late for my own obligation that morning, and frustrated that we were, yet again, dealing with the food dilemma, I told him that I was getting angry.

“Blake, it is important that you eat something,”  I raised my voice.  “It is not healthy for you to go to school without eating all day long.”

And then I said IT.

“This is your OCD interfering with you being able to make good choices for yourself.  It is NOT about making the right or wrong decision.”

By IT, I mean that I actually invoked the words “your OCD.”  I actually pointed out that something was OCD.  We’ve been not pointing out OCD around here for months now – close to a year, actually.  It was part of our agreement with Blake when he refused to participate in treatment any longer.  We wouldn’t point out his OCD.  It was his to deal with.  The consequences, everything, they were all his.  And, yet, in that moment I could not help but point out how it was OCD that was holding him hostage in the refrigerator door – nothing else.

I ended up shoving some sticks of cheese into his hand as we walked out the door.  He ate them, gratefully.

“I don’t understand it,” I said to him as we drove to school. “You go to your aunt and uncle’s home and you eat with abandon.  You don’t question anything.  How do you know that they do it all right?  Maybe there’s something they do that breaks the rules.”

“I don’t know,” he told me.  “When I’m at their house, I let go of responsibility.  They are responsible for the rules.  If something is wrong, it’s not my fault.  When I’m home, I’m responsible.  I don’t trust myself!”

We reflect for a few more minutes on the drive that this is one of OCD’s sinister tricks.  It has you believing that, if you make a mistake, the consequences are dire.  Therefore, you must question your moves over and over, making action and decision-making excruciating.  However, if you give the responsibility over to someone else, and they make a mistake, the blame does not lie with you.  Either way, you have a quandary to face: accept responsibility and struggle (no, agonize) over your decision-making, or give up responsibility, but lose the ability to be a true actor in your own life.

“Blake, you know the only real way out of this is to tell OCD to get out of your business.  You don’t need to be troubled by whether you are making the ‘right’ or ‘wrong’ decision.  We both know that it’s not about that. It’s about making the best decision you can at any given time, even though that may mean living through some uncomfortable feelings.  I know that you can do it, and I believe that you deserve much more than to live like this.”

“Thanks, Mom,” he says.

As he leaves the car, I know better than to think that anything will change.  He will continue to struggle over what is the “right” food to eat, way to pray, clothing to wear, game to play, thing to say – the list goes on.  Watching your child struggle is a struggle.  As a parent, I want to see him be happy.  I want to take away the needless tension that dogs him day after day, yet, I cannot.  It is out of my hands and in his.

Finding a Therapist

Image courtesy David Castillo Dominici at freedigitalphotos.net

A little while back, one of my wonderful readers asked if I would write a post about finding a therapist who treats Obsessive-Compulsive Disorder.  I thought that was a wonderful idea.  I know how confusing it can be to find a therapist to treat yourself or a loved one.  It’s tough for me – and I AM a psychologist with plenty of connections in the mental health community.  It can be that much more confusing when you don’t know the lingo or what to even look for.

What I am sharing here is a combination of my personal experience in obtaining treatment for Blake, as well as suggestions from wonderful resources such as the International OCD Foundation (http://ocfoundation.org), the Anxiety and Depression Association of America (http://www.adaa.org), and the Association for Behavioral and Cognitive Therapies (http://www.abct.org). Please take it as just that, not as a perfect guide for finding a therapist.  Ultimately, it is best for you to make a carefully thought out decision that you determine fits you or your loved one best, perhaps with input from a medical or mental health professional who you trust.  That said, here are some thoughts I have:

Ask Professionals You Trust:

Many times, our own doctors or friends we know who are mental health professionals know people who treat OCD.  If there is a professional in your life who you trust, ask them.  When I reached out for help for Blake, I called another therapist friend who had noticed Blake’s OCD symptoms.  She had mentioned to me that she knew a child psychiatrist who specialized in OCD.  I am personally asked by friends and acquaintances all the time for referrals to therapists for different types of issues.  And I am very happy to assist if I am able.

Contact Professional Organizations:

Mental Health professionals who are dedicated to treating Obsessive-Compulsive Disorder and anxiety disorders often belong to specialized organizations, such as the International OCD Foundation, the Anxiety and Depression Association of America, and/or the Association for Behavioral and Cognitive Therapies.  If you live in a country besides the United States or Canada, search for organizations in your country that are for therapists who specialize in treating OCD, anxiety, or in Cognitive Behavior Therapy.  Many of these have a part of their website where you can actually search for a therapist who specializes in treating OCD in your area – or nearby.  Or you can call the organization directly and they will help you locate a therapist.

Interview Therapists on the Phone:

Most therapists are happy to speak with you on the phone before you decide to make an appointment.  Choosing a therapist is a very personal decision and no one therapist fits all. If it is possible, speak to more than one therapist who treats OCD.  Ask questions about the therapist’s approach to treating OCD, as well as their training and background.  Specifically, are they trained in Cognitive Behavior Therapy – Exposure and Response Prevention?  Find out how loved ones are included (or not) in treatment.  How much of their practice is devoted to treating OCD, or anxiety disorders?  What is their attitude about medication (experts will generally say that it is best if the therapist is open to it as a potentially beneficial part of treatment)?

When I made that first call to the psychiatrist, he personally phoned me back and took time to assess the situation.  Based on what I shared, he believed that Blake could begin with a psychologist (which would also be more cost effective) and he referred me to one.  That therapist also personally returned my call and spoke with me about the situation before we decided to proceed with treatment.

Assess Your Own Level of Comfort:

When you’ve interviewed a therapist, ask yourself how comfortable or confident you feel about the therapist.  This is important.  This is someone you, or your child, will be sharing personal information with and who will be asking you (or them) to do things that make you feel uncomfortable.  It is essential that you feel comfortable and confident in order to create a strong working relationship.

I recall having felt so heard on the telephone, both by the psychologist, who we ultimately saw, and by the psychiatrist we spoke to first.  The psychologist even spent time educating me about OCD during our conversation and referred me to a helpful website and to books that I could order that would help me to help Blake.  Before we ever met, I was confident that both individuals could help my son and our family.

Educate Yourself:

This is not so much about finding a therapist, but it will certainly help.  One of the best recommendations I received when we realized that Blake had OCD was to read about OCD from reputable sources, like the International OCD Foundation, and to obtain books on treating OCD in children.  Learning about the disorder yourself helps you to know what to expect from treatment and to understand what is happening in therapy and why.

These are just a few thoughts I have about finding a therapist.  I hope that they are helpful.  Here are a couple links to more information on finding a therapist to treat OCD:

– International OCD Foundation:  How to Find the Right Therapist

– Anxiety and Depression Association of America:  Choosing a Therapist

 

On the Road

I am late in posting this time around.  We’ve been on the road as a family.  It’s Spring Break in our town, and with one who is a high school junior and another who is just two years behind that, we are taking a look at universities and colleges.  What an interesting ride it has been.

Our journey has taken us deep into the Southern United States, into places none of us has ever been.  It has been fun, meeting new people and learning new customs. This is something neither the hubby nor I did before we set off for college.  We simply applied to the schools closest to home, but Michael is determined to explore this world. He is drinking this whole experience in, taking risks, trying new things.  He is excited about the world.  Blake, on the other hand, could not be more uncomfortable.

Take a teen who is full of rituals and fears and show him the world.  This young man is not liking it one bit.  He feels suspicious.  He feels scared.  And he is clinging to his rituals more tightly than ever.  When we drive, there are plenty of “how much longer will we be driving” questions and “I am suspicious” statements and “I need to go home (or to the hotel) NOW!” demands.  He has to pray.  He has to avoid the food.  He cannot touch this or that.

I’ve watched Blake squirm nearly constantly over the last several days.  It makes me feel sad.  I feel incredulous when he uses a clean piece of clothing to pick up his own “dirty” underwear.   I feel impatient as he stops to pray (yet again) and begs for my phone so that he can research the “right” thing to do in this instance.  I miss him terribly when the rest of us stop to eat and he won’t even get out of the car to join us because the outdoor tables might be contaminated from remnants of food long ago eaten.  And I feel so achy inside when a woman we’ve just met, a psychology professor from Canada, tells me, “Your younger son is wonderful, but, you realize he needs help…”  Yes, I assure her, I realize it (I don’t go into the whole story about how he refuses that help).

And, yet, there are also small slivers of beauty.  Yesterday, as we drove a long, lonely road, I pulled out the iPod and played some old songs:  “The Lion Sleeps Tonight” and “Then Night Chicago Died.”  As we all break into song and join in, Blake’s voice rises above the rest of us.  He is exuberant and animated as he busts out the tunes.  My husband squeezes my hand, and we both take in the piercing loveliness of the moment.