Talk - I should say, listen - to first-generation NAMI family members. These are people in their 70s or 80s caring for sons and daughters in their 40s and 50s and 60s, individuals with severe mental illness such as schizophrenia. Back in the bad old days, both the mental health profession and society-at-large turned their backs on these fathers and mothers. They were blamed for being bad parents.
Things haven't improved all that much over the years. Keep listening and you will hear their concerns about who will look after their kids after they are gone.
We know the world is a cruel and indifferent place, but nevertheless you can't help but want to shake your fist at the heavens like some lonesome prophet on a wilderness mountain top.
You will hear similar stories from a younger generation of parents, this time mothers and fathers of young kids with bipolar. Again, the lack of empathy and concern from people who should know better. Again, people blaming them for being bad parents.
Two previous blog posts - Age Six and Age Seven With Schizophrenia - sympathetically featured Jani Schofield, a seven-year-old who has been diagnosed with schizophrenia. Surely, that cannot possibly be true, is a justifiable first and second and even tenth reaction. Earlier this year, her father Michael began an eye-opening blog, January First, documenting Jani's extraordinary situation and the extreme distress it is causing her family.
Shari Roan of the LA Times picked up on the blog, and just recently Oprah devoted a whole show to Jani. Both the LA Times and Oprah were highly sympathetic, both to Jani and her family. Mental health journalist Robert David Jaffee, writing yesterday on the Huffington Post, also evidenced clear empathy. As Mr Jaffee reports:
The expression, "I had a bad childhood," has never seemed sufficient for describing the horrors visited upon many youth. The expression's inadequacy becomes apparent when one hears the story of Jani Schofield, a seven-year-old, who has been diagnosed with schizophrenia and has already been hospitalized seven or eight times in psychiatric wards. Typically, psychotic disorders afflict people no earlier than their late teens.
Though we live in an era where too many have been over-diagnosed and over-medicated, the case of Jani Schofield makes one realize that not all diagnoses are created equal and some diagnoses, like child-onset schizophrenia, will never be fashionable.
It is important to note that Shari Roan, the producers of Oprah, and Oprah herself, all had conversations with Jani and her parents, while Mr Jaffee interviewed Jani's mother Susan. A far different response came from those who simply interviewed their keyboards. Blogger Liz Spikol, citing Furious Seasons with approval, was all too representative:
Michael Schofield’s voice on his blog makes him come across as a very angry person with serious anger management issues–a person who’s self-aggrandizing and resistant to learning new things.
A few days ago "An Open Letter to Oprah Winfrey," signed by 95 mental health workers, patients, and family members from an organization called Intervoice, added a new twist. According to Intervoice:
We want to tell you about an alternative and more empowering approach to the experience of hearing voices. ...
The letter continues:
It is important that we appreciate that the desire to make the voices disappear is a goal of the mental health care services and not necessarily that of the children themselves. There are some children who did not want to lose their voices. This is OK, for the most significant thing is that the voices no longer remain at the center of their attention. This is because, as the relationship with the voices change and became more positive, instead of hindering the child the voices start to take on an advisory role. If children find within themselves the resources to cope with their voices, and the emotions involved with hearing them, then they can begin to lead happier and more balanced lives.
The most important element in the process of positively changing a child's relationship with his or her voice is support from the family. Unfortunately, our research has shown that being in the mental health care system had no positive effect on the voices. However, we did find that what had a positive influence on how the child coped with hearing voices was being referred to a psychotherapist who accepted the reality of the voices and was prepared to discuss their meaning with the child.
Had not Jani been brought into the conversation, there would be a lot of merit in this point of view. This is an extremely important topic that deserves a full airing, but not in the context of Jani. Any reader of Michael's January First blog realizes that there is far more going on with Jani than simply hearing voices. Her unpredictably violent and explosive outbursts have compelled her besieged parents into leasing two separate apartments, so that one parent (and Jani's younger brother) can get a break.
Ironically, Jani and her family seem to have been applying the Intervoice prescription all along. From the online video clips of the Oprah episode, it is apparent that Jani is already comfortable with her hundreds of voices, denizens of her imaginary "Calalini" world. Moreover, it is clear her parents support her in this.
But now, it seems, Michael and Susan are losing their daughter to her fantasy world. As Michael reports on his blog:
The point is that the real world is increasingly becoming irrelevant to Jani, something that was not the case at two years old. Jani was acutely aware and sensitive to others around her up to the age of three. In fact, her needs seem to come second to the world around her. Starting at three, she went backwards to the point that now she is more like a toddler than she when she actually was a toddler in the sense that Jani’s interaction with the world is often limited to her basic needs (food, bathroom, sleep).
I realize I am stating all of this in a coldly intellectual way. It is a defense mechanism. Right now I have detached myself emotionally and am looking at this as if I was an outside observer because in reality I am losing this War. I am losing my daughter. ...