In the Middle

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It’s been longer than usual since I’ve posted here.  Truth is, I’ve been dealing with a little blogging quandary, and I’ve needed time to mull it over.  I’m going to share it with you.  Those of you who write personal blogs may be able to relate.  If you can, I’d love to hear your thoughts on the matter.

I write in this blog about what it is like to live with a teenage son who has OCD and who, other than medication, refuses treatment.  From a number of comments and feedback I’ve gotten recently, I’ve started to think that I may be giving readers the impression that our lives are very difficult or painful, and that they are punctuated by frequent crises.  I also may be making it seem like Blake is barely functioning; that we are saddled with a teen who is unable to make it day-to-day.

I know I hold the responsibility if that is the impression I’ve created.  I started this blog as a place to share the many emotions I was feeling as I confronted the fact that my son denied the ways in which OCD affected his life.  I also wanted to document our life and the stories that punctuate it.  I hoped to be able to look back one day and see the journey – one that I hope will lead, eventually, to Blake deciding to fight back against his OCD.

TIRED OF STEREOTYPES

I also had another motive.  I was sick and tired of the stereotypes that I constantly see about OCD.  I wanted to show that the face of OCD is more than about a quirky desire to clean things.  I wanted to let people know that OCD is about much more than the little habits we have in our lives (like preferring that the labels in the cupboard face forward).  I wanted people to know that OCD can cause real pain, even torture, for those who have it and for those who love them.

The truth is, though, in our family, and many others that are touched by OCD, our lives are not dominated by crisis, pain and despair.  Our lives are actually like so many other lives out there.  We have great days.  We have painful days.  And, quite a bit of the time, we have days that are right there in the middle.  Unremarkable, you might even call them.  It is a good life.

Generally, I do not write about the “in the middle” days.  I write about OCD and its impact on our family.  I don’t write about how Blake has a project to do at school or how Michael is spending the afternoon with a friend.  I don’t talk much about how Blake has great relationships with his teachers and how he does well at school.  In fact, most of his teachers are unaware that he even has OCD because it is not that obvious to most people’s eyes.  I don’t write about how we talked about politics at dinner, or how the people three doors over took the boys to the swimming pool.

THE QUANDARY

I don’t write about all that because, unless it’s occurring along with an OCD incident, it’s not what my blog is about.  But maybe I’m doing a disservice.  Perhaps I’m causing people to fret too much about us.  Perhaps I’m not showing a wide enough picture of what life with OCD in the family is like.  Life with OCD in the family is lots of days “in the middle” and moments (some longer than other) with difficult and painful circumstances.  So, perhaps, I need to broaden what I write about.  Perhaps I need to show you what our life is like in the larger context, rather than waiting for and OCD moment to tell you about.

I’m still mulling it over.  Regardless of what I do, please know that we wouldn’t change the life that we have.  Yes, it has its struggles.  Yes, sometimes it is hard, but it makes us who we are – as a family and as individuals.  And I can say that I love who each of the people in my family is.  None of us is perfect, and we each have challenges.  Dealing with those challenges as a family makes us stronger.

 

Can You Help Us?

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This morning my husband and I had our meeting with a local religious leader.  Blake is not aware of it so far.  We figured that telling him about it would likely breed his suspicion of what we were up to.  Frankly, we really didn’t know what, if anything would come of it.

To catch anyone up to speed who does not know what I am talking about, our almost 15-year-old son has Obsessive-Compulsive Disorder (OCD).  While it shows up in several ways, including fears of contamination, the major way it currently impacts his life is in the form of scrupulosity.  Scrupulosity is a type of OCD in which religion, morality, and OCD become intermingled.  The sufferer may fear doing religious rituals “wrong” and be concerned about offending G-d or being punished. They may repeat prayers or rituals, create new rituals, and/or look for ways to do penance for perceived sins.  It can show up in many ways, but that is the gist of it.

Blake is a prayer repeater, frequently is doing penance, and fears that the rest of the family may contaminate his religious observance.  He constantly has questions about religion, but has not had the benefit of working closely with someone who can truly mentor him.  He spends many hours on the internet seeking answers and writing to anonymous religious authorities who can only answer him in generalities – and who know nothing of his OCD.  My husband and I felt that we could not let it continue in this fashion, unchecked.  So, we reached out to someone in the community who knows enough to be able to answer Blake’s questions.  First, however, we felt it was important that he know about the whole situation.

When we arrived this morning, I was already emotional.  Would this man even listen to Blake’s story fully enough to recognize that this was not just about guiding a young man to be more religious, but that there were complicating emotional factors?  My husband squeezed me as we walked in the door.

The meeting went better than I could have anticipated.  This gentleman took time to learn about our family – about all of us.  Then he learned about the religious observance, and then he asked us to explain OCD to him.  He deferred to us on this.

“I understand a good deal about autism,” he explained, “but not OCD.”

As our discussion progressed, he seemed to understand that the goal is for Blake to get solid, real information, and for him to also learn what he does that is not religion – that which is OCD.  He asked us some hard hitting questions.  He helped us examine our motivations.  In the end, we agreed that we will all begin by attending some religious classes together, where Blake (and my husband and I) can ask all the questions he wants to.  It is our hope that he can build a trusting relationship that will begin there.  From that point, we shall see.

Our meeting ended with some wisdom being shared with my husband and I.  There is some thinking in our religion, the religious leader explained, that children who have special needs also have special souls and spirits.  Everyone else who is considered “healthy” has an “average” soul.  These special children have such a strong soul and come into this world already spiritually uplifted to a degree that their behavior looks different than the norm.

“You have a special son,” he told us.

The belief, however, goes on that these special children are entrusted to “special” parents who will know how to guide them.  They have the skills that will ensure that these children fulfill the roles that they are here to live out.

“You have a special son – and he has special parents.  It is a privilege to be a part of this journey with you.”

I left the meeting with tears rolling down my face.  There was no judgment. We were uplifted as being parents who are suited for this task.  There was understanding and an honest desire to help.  I am hopeful about where this can go and look forward to setting down this road.