Bucking Conventional Wisdom in Mental Health

strollercliffMy two hot buttons are pushed every time the topics of psychoactive drugs and forced treatment are brought up. The two are interrelated. First, there is an over-reliance and near worship of psychoactive drugs in our culture. The other is the problem of power and coercion, forced treatment intended to be helpful but ultimately damaging.

I am a single mom of two boys, both adopted as infants. They are now young men ages 26 and 20. My 26 year old, whom I’ll call Joe, has big gifts and big challenges. I’ve worked in and around mental health for over 40 years. Not as a clinician, but often in situations that created relationships with people with the life experience of mental health diagnoses and extreme states. As my son’s challenges began to come to light in kindergarten and first grade, I tried to call on that life experience and my optimism for his future. I confess I also tried to “fix” him although I would never have called it that. I thought surely if we get a handle on whatever is going on now, we’ll know what to do!

I came into this journey believing medication was a last resort, and I got a lot of lip service in that regard. However, I couldn’t hold on faced with the countless professionals in all manner of fields who believed medication would necessarily be part of any plan for him. We started medication in fourth grade, took a holiday in 6th, by the end of 7th he was back on them and remained so until he was about 23. I kept a running tally of medications tried for a long time. Not sure I got them all – but I have 27 on the list, often in cocktails of 3, 4 or even 5. He has had 13 years, literally half his life, under the influence of medications. He’s now been off all medication for 3 years.

I decided to write this after another blog about the Murphy bill. It opened with a brief story about a 19 year old stopping his medications wanting to know what he is like without them. I wanted to tell the 19 year old that he can find out what he is like off medication, just don’t go cold turkey. Seeing bad results in 12 days doesn’t mean you need medications for life! If you’ve been on as long as my son was, take a year or even more to come off.

My son’s last drug was clozaril . We both say the best thing about clozaril was it got him off everything else. As the psychiatrist was attempting to bring the dose up, my son began saying no, he wanted to come down. Eventually he just stopped. He calls it cold turkey because there was that final day of “I’m done!” but in truth it was a long, slow taper.

Life hasn’t been without bumps since then. But we have a much better class of problems and he’s experiencing a better range of feeling and functioning than he ever did on the medication – any of them. He has some very dark times that come on him suddenly, but he’s learning to manage those better and better. Connecting with others on the journey, learning about hearing voices (www.hearingvoicesusa.org) and alternative views about his experiences have been powerful and healing. Most important, these so called alternatives have revived hope.

I want to move to another subject and that’s the power dynamics in mental health, and in parenting into adulthood. I don’t feel 18 should be such a cliff. It’s not a surprise. We all know that it’s coming. Joe was the kind of kid who played power trips all along and so I had to adjust and find ways to avoid that. One way for 18 not to be a cliff is to release and become more of an observer and supporter earlier. For me the dance goes on — suggesting, supporting, cajoling and whatever other approaches occur to me along the way. I’ve found the most powerful thing I can do is just be present. We go for car rides in bleak and dangerous times. I might sit quietly in the room with him as he talks things out. It doesn’t have to make sense to me. But curiously, eventually, it does make sense.

Once when I was in an appointment –at Joes’ request– to hear an update on medication, the psychiatrist started talking to him very gently about how critical it was for him to stick with the (medication) program. She told him if he didn’t, he’d lose judgment…he might not even recognize that he was sick. Although this was a stage when I didn’t typically speak, I did speak up. “That hasn’t been my experience. Joe does know when he is struggling more and he reaches out for connection. Sometimes not in the greatest way, but he does know.”

I’ve thought about that brief conversation countless times, and it becomes more important each time I hear it in my head. I think it’s a terrible message to tell someone that they don’t know themselves, can’t know themselves – and believe me, I know when it looks like that! People can make sense of their experience and can be supported through extreme states without force. In fact, I believe force is tremendously damaging and I won’t play that card. No AOT or Roger’s Orders for us. There’s much more I’d like to say, but I’ll save that for another day.

Our guest blogger Marylou Sullivan is the parent of a young adult with mental health challenges. She is the Executive Director of the Western Massachusetts Training Consortium. Ms. Sullivan is a passionate advocate for people with disabilities.

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6 Responses to Bucking Conventional Wisdom in Mental Health

  1. Lisa smith says:

    Thank you for Sharing. My son and I go on car rides also. Medication is bitter sweet, so heartbreaking he takes it and seeing the side effects but a relief he will be able to get a good night sleep to start his day hopefully a little stronger.

  2. Sharon Antia says:

    Mary Lou,
    Thank you for this post. I have an 18 year old that has been saying, well, he has been saying forever that he does not need his meds but, in the last year or so he has been saying it with more meaning as opposed to being obstinate. I encourage him to talk to his doctor and come up with a plan to taper off his meds but every time he has an appointment he tells the doctor his meds are ‘good’ so I do not think he is ready. However it is nice for me to read about you and your son’s experience. I will tell my son this story in the hopes of helping him understand that a) it is not an all or nothing bargain and b) it is a long, slow, thoughtful process.
    We have been fortunate in that at least so far our kids have continued to let us be part of the process even after going ‘over the cliff’. Not entirely part of the process of course (and thank goodness) but they (sometimes) listen to our advice and (generally) welcome our engagement with medical professionals.
    I share your frustration regarding professionals thinking our kids do not know themselves. I know for my boys, they know themselves at least as well as anyone, often better. I imagine in large part due to what they have gone through and continue to experience, they are deeply aware of their personal trials; their emotional and behavioral ups and downs. They do not necessarily always wish to discuss them or acknowledge them but they are intensely conscious of all their traits that lend to them seeing themselves as ‘different’ or ‘less than’. What they struggle with recognizing is that their personal struggles are just that, their personal struggles. If only they could see that everyone they encounter has their own set of personal struggles. If anything, in some ways my kids’ struggles makes them ‘more than’ rather than ‘less than’, but that is a ‘nuther story.
    ‘Enjoy’ the snow!!
    Sharon

    • Marylou Sullivan says:

      Sharon,
      Thanks for writing. I too am grateful that my son stays connected with me. I have seen families really fractured, and I am sure you have too. Wishing you all the best.
      Marylou

  3. Sidney Gelb says:

    Hi Mary Lou,

    Thanks for sharing your view. It appears that we are well behind some of the effective treatments that are offered in Europe, Findland for one has a treatment program called open dialogue where the individual has two psychiatrist and dialogues about what is going on in the life of the person. It is then open to the parents and other family members. I believe it is done without medication. On February 24, NAMI Newton Wellesley will be presenting an education seminar on “Open Dialogue” by Dr. Chris Gordon, Medical Director of Advocates, Inc.

    • Marylou Sullivan says:

      Sidney:
      I agree that the Open Dialogue approach is very positive and I am glad there are efforts in Massachusetts to move in that direction. I wish we could have had that kind of support in our most difficult times. https://www.youtube.com/watch?v=aBjIvnRFja4
      this is a link to a trailer on the Open Dialogue video, produced by Daniel Mackler. He has done several videos about alternative approaches and interpretations of extreme states and mental health . Thanks for writing.
      Marylou