For a long time I thought it was us. I even wrote a post a while back where I analyzed interactions and speculated on the possible rationale behind our strained relationships with the staff at our son’s residential treatment program. We must have come on too strong, we were in a weakened state, we had some personality conflicts.
I no longer believe any of the above. I have connected with too many parents who share similar stories. Accounts of being ignored, disrespected, even blamed. Especially when dealing with intensive residential treatment programs for obsessive-compulsive disorder.
Often the discord seems to emerge when parents try to advocate for their children. Not antagonistically, but passionately. Because as I’ve said before, while the staff there know how to treat OCD, they don’t really know the person they are treating. Teenagers or young adults entering one of these programs might very well be in the worst condition of their lives. To an outsider they appear to be little more than their OCD. The people who really know these OCD sufferers best are, in most cases, their parents. Parents know the essence of their children: their beliefs, hopes, dreams. What makes them them. At the time Dan entered his intensive residential program, my husband and I knew him better than anyone else did, even more than he knew himself.
It still boggles my mind that we were not welcomed with open arms and treated as an essential resource toward Dan’s recovery. Yes, we asked questions. Not about the details of Dan’s OCD, but about how we could best help our son. Yes, we wanted explanations when something was confusing to us or didn’t seem right. Yes, we brought up the side effects of his medications. What parent wouldn’t do these things? Yet we were seen as overbearing and intrusive, and this is the story I hear over and over from other parents. Even when HIPPAA Privacy Rules have been waived, professionals at these programs are often reluctant to include parents in any aspect of their patient’s care. While my experience and the stories I’ve heard revolve around parents whose children are in residential programs, I wonder if the same issues arise when dealing with, let’s say, a spouse, parent, or other loved one who is in an intensive treatment program.
You might think this is all so upsetting to me because, let’s face it, nobody likes to be treated this way. But that’s not the reason. This treatment troubles me deeply because it only adds to the suffering of our children. In our case, Dan quickly picked up on the tension between us and the staff, and this added to his own stress. Not what he needed. How great it would have been if the two parties who wanted to help him could have worked together toward his recovery. Surely we would have all benefited from this collaboration, especially Dan. And wasn’t it all supposed to be about him anyway?