It’s Not Us

mother and daughterFor 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?

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29 Responses to It’s Not Us

  1. Ann says:

    I was always amazed at how badly *I* was treated in trying to seek help for my OCD. The therapists have generally been great. But my insurance plan treats me like a “crazy” person when dealing with my OCD. I can hear their eyes rolling when I call. And yet when I call with a question or problem regarding any other health issue I’m always treated with respect. It’s really terrible.

    • Interesting, Ann, how you can even sense the stigma through a phone call. It’s disheartening to say the least. I’m glad your experience with therapists has been good overall.Thanks for sharing.

  2. nrkellner says:

    Having had a similar experience with mental health practitioners, I agree that not including the family is a widespread issue.

    But, and this may sound naive, I believe your writing here and your speaking at conferences may slowly but surely turn the tide. If you can bring more attention to this very common sense observation (about family involvement) and get a conversation going on about it throughout the mental health community then maybe, just maybe, we will start to see some change.

    There must be some programs out there that do a better job of valuing family input. Maybe you could highlight some of those.

    Thanks for being this voice.

    • Thanks for your comment, and I do hope that the more we all speak out, the more likely change will happen. Thinking about what you say about programs that value family input, I realized that the program Dan attended stressed the importance of family involvement “on paper,” but that’s not how they actually operated. So I would rely more on personal stories than on how a program is “advertised.” Certainly I would love to hear from anyone who has treatment programs to recommend.

  3. Dead on, which is why I wrote my book Parents Are People, Too. When I stopped being a college professor and became a special need foster parent, at best I had become invisible, but most often I was seen as obstructionist and the source of the problem.

    I have two favorite stories. One a psychiatrist said our three of our first six foster childen flipped out because I made them drink skimmed milk. An absolute lie, in fact they were not allowed the skimmed milk which was for my husband. The same three causes a similar riot in a locked facility where the shrink worked. And they didn’t serve skimmed milk.

    The second story involve a boy who lived with us less than a day before running from our home, burglarizing a neighbors house. His probation officier’s first words to me after hearing he had run “What did you do to my boy.” Grrrrr. That was in the 1980”s but things have not gotten much better. Follow the money and you will see why.

    Any one still struggling, might want to follow either of my blog posts which can be done or my When Good Kids Do Bad Things Facebook page.

    Forgive the plug, I want today’s parents to understand that the private residential treatment centers are money makers, so hope some of you will join my efforts and share your stories.

    Janet, for all you do, thank you.

    • Thank YOU, Katherine, for sharing your stories (always amazing!) and your links. I don’t like to generalize as I know these programs have been helpful to many people, including my son, but there are so many issues that we all need to be aware of before committing to a program.

  4. 71º & Sunny says:

    I’m so sorry that was your experience. Surely, most parents simply want what is best for their kids. I don’t understand why treatment professionals can’t see that. You both want the same result – a healthier child/patient. I can’t imagine how frustrating that was for you.

  5. kris says:

    Could it be ego? I have had some excellent doctors but I have also had my fair share of duds. Some doctors do not want to be challenged/questioned/bothered by the patient or family even when in the best interest of the patient. I understand families are complex and some could be hard to work with but I believe in most cases families should be embraced and involved in the recovery plan.
    My husband and I moved around every 3 years because of military reassignments and it seemed like my new doctors always wanted to put me on new or different medications even if I was doing fine. I do not think this was in my best interest. When I finally got cared for by an OCD Specialist, he wisely advised me not to let another doctor change my medication without a very, very good reason. My following doctor wanted to add Abilify to my SSRI and he got very angry when I questioned his reasoning and even asked me where my medical degree came from? Ouch! I think that was a good indication that he was not a good fit for the medical care I was looking for. A doctor that does not want to answer questions or is not interested in a family advocating for their loved one is not in my estimation a good doctor. Maybe that is the message we should send. I know it is not that easy, sometimes we are limited by where we live or insurance. Sometimes I fear that my insurance company is going to be more in charge of my care than my doctor or I. If you have a choice don’t settle for a doctor just because of the M.D. at the back of his name.

    • Kris, you hit the nail on the head, and I totally believe ego plays a major role in a lot of the mistreatment of patients. I didn’t “go there” in my post because there are indeed many good doctors out there, and I don’t want to judge an entire group of professionals based on some bad experiences. We had an eerily similar experience to yours. When our son was put on Abilify, my husband (with Dan’s permission) called the psychiatrist to (very nicely) ask why. The doctor became extremely defensive and asked why he wanted to know. Why he wanted to know? Shouldn’t it be obvious why we wanted to know?
      I’m beginning to think these issues are more widespread than I thought….

  6. Lori says:

    In our experience we are with a good therapist who specializes in OCD, but my child doesn’t feel comfortable talking to that individual. I’ve asked for someone different in the practice, but they feel it’s all avoidance on my childs part. It may be – but on the other hand he’s asking for therapy and a new therapist so I don’t see how that can be total avoidance. They are being very stubborn in giving us a new therapist – so I may have to look elsewhere. They recently did a re-evaluation and we will hear about their recommendations soon. It just upsets me that all they see in my child is what he’s not doing and not what he’s accomplished. I feel like I’m the only one seeing the good in my kid. I’m not niave – I know he avoids with his OCD – but he’s doing a lot on his own with out a bit of therapy since this all happened. He’s 17 years old and I want him to play an active role in his choices and therapy. His therapist always seems to be a task master and all taking away priviledges right and left to get him to behaviorally be uncomfortable enough to go back to therapy. He wants to go to therapy – just not with her. Frustrating also – to know that things need to change, but therapist doesn’t see that. However, I find myself second guessing a lot too – but I feel like I’m the expert on my son. Not necessarily OCD. We’ll keep advocating!!

  7. Lori, Your son is lucky to have you in his corner, and everything you say sure makes sense to me! Especially…….while you might not be an expert on OCD, you ARE an expert on your son, and that counts for a lot when making decisions regarding a therapist. Good luck and please keep me posted as to how things are going.

  8. Tina Barbour says:

    I’m sorry you went through that experience with your son’s treatment center. That’s amazing that a place that “on paper” wants family involvement turns such involvement away.

    Your writing about and speaking about this problem will help. Your advocacy for better family involvement will reach others, and, I believe, help make changes.

    • Thanks, Tina! Yes, it is amazing and that’s why, at first, I thought it must be us. We were the problem. Now I believe it’s a widespread issue, and has nothing to do with the way my husband and I acted.

  9. TAE says:

    I’ve liked this post, because you make your point well, but the topic is upsetting. This kind of interaction happens in many situations in life, and I have to say I don’t get it whatever the situation may be. Our quality of life would be so much better if we treated each other with respect. In this case I feel like it’s not just respect that is missing, but also a sense of professionalism and basic human decency. I hope you find a way to snap them out of their behavior (which is sad, because that shouldn’t be your job). Hang in there.

    • Thanks for commenting, TAE. I agree with everything you say, and I never in a million years expected to be treated so disrespectfully by professionals. I think it will take more than just me to change their behavior!

      • TAE says:

        It does take a good mirror for a group that is self-absorbed and self-affirming to snap you of it. Are other people who use the same place for treatment among the people you talked to?

  10. Yes, definitely. I often have this “fantasy” of sitting down with everyone and having a civil discussion about this issue….maybe someday!

  11. The Hook says:

    Yours is a beautiful, courageous soul, my friend.
    All the best to you.

  12. karin says:

    I had a great therapist but she went on a leave of absense, so I got the ‘occupational therapist’ as my next therapist. When my ‘real’ therapist came back they wouldn’t let me go back to see her! I had to stay with the substitute, even tho i had a great rapport with ‘my ‘ therapist. Only when the ‘sub’ quit, did i get to go back to my therapist, and that was after begging on my part. Weird, as having a good rapport with a therapist is supposed to be a good thing. But that’s what i get for having therapy paid for by our health care program, i guess.

  13. That must have been incredibly frustrating and upsetting, Karin. It’s hard enough finding a good therapist, but to find one and not be allowed to continue with him or her is ridiculous. Glad it finally worked out for you. Thanks for sharing!

  14. Rebecca says:

    having families involved from the very beginning of treatment is essential for recovery. I am saddened and frustarted that this was your experience. Families know their loved ones the *best*, and that cannot be overlooked.

  15. Karen says:

    Our system for treating those will a brain disease (which I prefer to mental illness….we don’t say heart or kidney illness) is broken. In the past two days, my adult child was committed, as OCD is stopping them from eating and drinking. A counselor recommended this. It was the wrong thing to do. Police, with handcuffs by their side came to get him. One was wonderful. Two others said if we didn’t get him out in 8 minutes, they would cuff him and drag him out. Just want someone living in torment needs. He is not getting help. Its like he is a prisoner and not getting what he needs. He is so angry at me for doing what I thought would save his life, but in fact its making him worse. No medications. Just now saw a doctor. There is so little help for OCD in this country. I really don’t understand it because we know its touching more and more lives as daily living becomes stressful and in many cases, hopeless. I am a person of faith and belief and I am praying that God will intervene for my child’s sake, but I have no belief in this system. It doesn’t work. I know there are good people who go into this field to help others, but I have a feeling in a relatively short time, the system just sucks them in and the cogs on the wheel turn to benefit the system. My heart is broken, but I’m not giving up. Today my child hates me, but one day when he is well, he will see I never left his side because I love him.

    • Karen, Your story is heartbreaking and I’m so sorry you and your son went through such an ordeal. They might not be easy to find, but there are good health care providers out there who know how to treat severe OCD. Have you contacted the IOCDF for information? I would recommend doing that and if you want to email me at: and let me know where you live, maybe I can help. Wishing you all the best, and please don’t lose hope.

      • Karen says:

        What an angel you are! I will email you and let you know where I am. It feels like being in a maze……you know there has to be a way out, but you just haven’t found it yet. I’m so happy to have found you and that you have found that way out. You are a light to those of us still moving forward in the dark. Thank you so much! Karen

      • Thank you for your kind words, Karen, and that is exactly why I started this blog, so others wouldn’t feel so alone. Six years ago, I was exactly where you are now. If someone had told me then how well my son would be doing now, I wouldn’t have believed them. It’s true though, there is so much hope for your son!

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