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Plumbers & Carpenters & Fighters

It’s here again.

 

What I call my “black depression.”

 

I do not wish for death. The black depression is not a suicidal depression. It annoys me when I hear someone say of a suicide victim, “They took the easy way out.” Interestingly enough, the phrase does acknowledge the difficulty of life. If we are all prisoners in Plato’s cave, chained to the wall so that our heads cannot turn, we all suffer the various tortures that existence can bring, yet we condemn those who simply can’t take it anymore. Maybe it is jealousy on our parts. After all, to commit suicide means deciding to cross our greatest taboo: death itself. None of us know anything of what is on the other side of death. Whatever you or I believe we take on faith. And fear of the unknown is the most powerful fear we have. To kill yourself is to go to a place that no living human has ever gone to. You don’t know what is on the other side.

 

I’m in no particular hurry to find out.

 

But suicide also takes a certain level of energy. If you have ever experienced a truly black depression, simply dragging yourself out of bed takes supreme effort. The depression is so deep, the serotonin levels in the brain so high, that all you want to do is sleep. You have neither the energy nor the will to think of and carry out a suicide attempt.

 

This is why anti-depressants carry a “black box” warning when used in children or adolescents. The anti-depressant works by preventing re-uptake of Serotonin in the brain. Since Serotonin is the primary hormone secreted to make us sleep, preventing its re-uptake gives you energy, and that energy in turn can alleviate symptoms of depression. But if a second mental illness also exists, such as bipolar, or the child or adolescent is given to psychotic bouts of self-harm, the extra energy from the inhibited serotonin can give the child or adolescent just enough of a boost to carry out the sudden urge to kill themselves.

 

On September 14th, 1989, Joseph Wesbecker, who was on disability for mental illness, walked into his employer, Standard Gravure, and opened fire, killing eight and injuring 12, before putting a Sig Sauer 9mm pistol under his chin and killing himself. Less than a month before, Wesbecker had begun taking Prozac, which the families of the victims latched on to, suing Ely Lilly, at that time the patent-holder for Prozac. The families of the victims were understandably looking for someone to blame, and in those days not much was yet known about what SSRIs did to the brain. Did it change who you were? Did it rewire the brain?

 

Ignored was the fact that Wesbecker had a history of mental illness dating back to 1978, the year he was first hospitalized. He was hospitalized three times between 1978 and the shooting in 1989. In 1984, he was asked after a suicide attempt if he had ever felt like harming someone else as well (one of the three questions asked to determine if a patient can be held under a psychiatric hold). “Yes,” Wesbecker told the doctor. “Who?” the doctor asked. “My foreman, at work,” Wesbecker answered. By this time, Wesbecker had already attempted suicide 12 to 15 times.

 

12 to 15 times.

 

Wow.

 

I have only consciously attempted suicide once. I cannot imagine what it would take to drive someone to try 12 to 15 times. That isn’t simple pain. 12 to 15 times over six years means you are trying to kill yourself at the same rate that the average American takes a vacation.

 

12 to 15 times in six years isn’t depression. That’s a compulsion.

 

Wesbecker’s colleagues, friends, and family describe him as growing increasingly paranoid between 1978 and 1989. When a new company took over his factory, he was transferred to a new position. After a few months, he requested to return to his old job, complaining of stress. His request was denied and he became increasingly hostile toward management and began to believe that management’s failure to return him to his old job was the result of a conspiracy against him.

 

Was he a paranoid schizophrenic? We will never know. Certainly, there is more evidence of disordered thinking than depression, but perhaps the doctors who treated him focused on the suicide attempts and treated him for depression.

 

A lot of people don’t like it when I humanize killers. The “neurotypical” population doesn’t like it because they want to believe in evil, because believing in evil allows them to draw a distinction between themselves and the killer. It also lets them off the hook. Adult schizophrenics don’t like because they think I am spreading the myth that the mentally ill are dangerous individuals. Neither side wants to own killers as having perhaps been once like them before they opened fire on the innocent.

 

The reason I do humanize killers like Wesbecker is because we can stop killings like this. If you choose to believe that Wesbecker was just evil, then there is nothing you need to do, is there? Evil just exists.

 

But I thought God gave us free will?

 

And owning people like Wesbecker as mentally ill does not mean, you, as someone with schizophrenia or bipolar is also going to be a killer.  You are taking control of your own health. You are taking medication and in therapy. And even if you were doing none of those things, most likely you would never kill, although in all likelihood we would find you dead one day, hit by a car while wandering the street or beaten up by thugs or just dead from exposure.

 

But you say “I need to get an education. I need to get a job that is fulfilling to me. I want a life. How can I get these things if people think I might kill or ‘go crazy’ one day?”

 

Because you don’t. You don’t “go crazy” at all.

 

“Neuroptypicals” concept of psychosis comes from Hollywood films, where they see images of  McMurphy whipping the pajama-wearing inmates of an insane asylum into a frenzy in One Flew Over the Cuckoo’s Nest or Brad Pitt’s over-the-top Jeffrey Goines with the rapid hand gestures and winking eyes (the universal symbol for “crazy”) in 12 Monkeys or even Amanda Plummer’s “Honey Bunny” standing up on top of a diner table and screaming “Nobody move or I’ll execute every last one of you motherfuckers!” in Pulp Fiction.

 

Real psychosis looks nothing like that. Let me show you what real psychosis looks like.

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The two videos, above and below, were taken yesterday, in the lobby of the Santa Clarita Child & Family Center while waiting for Jani’s therapist. Jani takes the metal lock that allows the receptionist to secure the window between the reception area and the lobby. This piece of metal has teeth that form a serrated edge, designed to lock into the corresponding piece between the two panes of glass. Jani turns her wrist upside down and begins trying to cut herself with this serrated edge.

 

Jani has never seen anybody cut their wrist before, yet she somehow knew to cut the underside, where the ulnar artery passes through.

 

She is not rabid. Her movements are not rapid. She is just calmly sawing away at her own wrist. Susan tells her to stop. The receptionist, a stupid grin on her face, also asks Jani to give her the piece of metal and Jani complies.

 

The receptionist while smiling because she didn’t recognize that she was witnessing a psychotic episode. Jani was not emotional or difficult. She was simply passing the time by trying to cut off her wrist.

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In the second video, Susan asks Jani why she was trying to cut off her wrist. “So I can’t throw anything,” Jani replies.  Jani is fighting the impulse to throw and be violent, so the solution in her mind is to cut off her hands.

 

This from a child who freaks out and runs behind me any time a bee comes near. That is, when she is not in a psychotic state.

 

When you go out tomorrow and go about your day, you will pass dozens of people who will be, at that moment, actively psychotic but you will never know. They will stand right next to you at Starbucks. While you order your latte, they will be struggling to ignore the voices in their head telling them that they are worthless and should run out into traffic and get hit by a car. They may be negotiating with these voices, asking them that if they will just let them out of the Starbucks and let them get home, they will break out the razor blade and cut themselves where no one can see, or pull out some hair. They will promise to hurt themselves in some fashion if the voices will just let them have this moment, in public.

 

And you will take your latte, smile at them, and be on your way.

 

You will never know.

 

Psychosis is not loud and violent. It is quiet and its main target is the person it inhabits. The psychotic person would always rather hurt themselves than hurt you. Even if the voices want them to hurt you, they can usually be placated by self-injury to the host.

 

When Jani’s therapist or her psychiatrist ask her about her hallucinations, Jani tries to avoid the question. If they push, Jani will hit me. There is no loss of control. She just starts hitting me, without the slightest change in her mood or demeanor. I suppose her hallucinations don’t like Jani answering questions about them, so she hits me or Susan to placate them. She won’t hit her therapist. She hits only those she knows will forgive her. She hits the ones who understand. She hits the ones who will not turn away, will not abandon her. She doesn’t trust her therapist enough to hit her yet, because her therapist, trained in behavior modification like most therapists, treats Jani like she can control it.

 

And one day, maybe, she might be able to. But right now she is a child.

 

In my online support group, I have heard countless stories of children and teens who we as parents know are schizophrenic but are not believed by medical professionals, therapists, and residential treatment center staff, because the violence, when it comes, comes out of nowhere. Because there is often so recognizable trigger to the violence, and the child or teen seems emotionless, the staff see it as behavioral problem. The child is “choosing” to act up.

 

They are not choosing at all.

 

One of the key “negative” symptoms of psychosis is what is called a “flat affect,” or lack of emotion. This flat affect is not constant. One of the signs of psychosis is a failure to respond with appropriate emotions to external situations, or where the emotional response isn’t appropriate to the external stimuli.  Someone who is psychotic will not give you warning by flying into a rage before they try to hurt themselves. Everything will be fine and suddenly they are trying to cut their own wrists. There are no tears, no screaming, no “I hate you!” or what we associate with teen angst.

 

There is just a thought: If I cut off my wrists I can’t throw anything anymore.

 

Psychosis is not violence. It is the absence of logical thought.

 

Emotional state will give you no warning of psychosis.

 

This is why the “behaviorist” model of intervention is a total failure for kids who suffer from psychosis. Behavior modification is about teaching the child to be “aware” of feelings and then take appropriate action to deal with those feelings.

 

But psychosis does not come from feelings. It comes from thoughts, and once a child is in a psychotic state, they cannot “think” and “take appropriate action” because logical thought is no longer available.

 

It is possible to teach a person to be aware that they are thinking irrationally (which is a rational thought, hence the conflict) but this kind of training takes years. The only schizophrenics I know of who have done it are adults. Kids already have to deal with unstable emotions, and schizophrenic children have to deal with unstable thoughts on top of that.

 

By the way, after Susan told me what happened, I called UCLA for a direct admit. The nurse told me she would consult with Dr. DeAntonio, the head of the Child & Adolescent Psychiatric Unit at Resnick Neuropsychiatric Hospital at UCLA. A few hours later, she called me back to say that she had spoken to DeAntonio and he did not feel Jani needed to come back in.

 

Apparently, trying to cut your wrists with a piece of metal does not qualify as grounds for readmission. I guess it needs to be a real knife and there needs to be blood. What is really helpful is if you cut an artery and nearly bleed to death. Blue Shield can’t argue with that.

 

After all, the motto of American insurance companies when it comes to mental health is: Nearly die and then we will help you… maybe.”

 

It is pretty hard to “Thrive” as Kaiser Permanente likes to tell us in their commercials when your mind is telling you to hurt yourself.

 

The therapist was quick to tell us that “Jani was fine,” in the following session, clearly insinuating that we were the problem. No, Miss Therapist, Jani was “fine” because she had been restored to her normal schedule after you went on vacation.

 

Schizophrenia doesn’t take a vacation.

 

The next day we received a letter of rules from the Santa Clarita Child & Family Center. Number one was that video recording is not allowed to protect the safety and confidentiality of their patients.

 

They knew we had filmed what had happened.

 

I am not a fan of “no camera” rules because they aren’t really there to protect patient confidentiality. They are there to protect the facility so there is no visual record if they are not doing what they are supposed to be doing.

 

Individuals suffering from mental illness are at the mercy of whatever institution or organization is treating them and bringing in a camera is the only way the mentally ill can protect themselves and make sure they get the therapy and services they are entitled to under the law.

 

I was also struck by the final rule: If your child becomes violent toward staff, destroys property, or is otherwise disruptive, the parent must remove the child from the premises.

 

Oh, I see. They will only help Jani if she is a good little girl.

 

Then why the fuck would we be there in the first place?

 

It is like telling a child undergoing chemotherapy that you will not treat them anymore if they vomit from the chemo.

 

Rules like this are universal to “outpatient” clinics and they are, flat out, immoral. It is morally wrong to kick out a child because of symptoms of their illness.

 

Any child in a psychotic state or rage can be calmed down. You just have to stay calm yourself and ride it out. Do the therapy session outside. Go for a walk with the patient. Get your fat ass off the chair.

 

Newsflash to future psychologists: You can’t help people by just sitting in a chair. You can’t help people just by talking. You can’t ignore a patient in crisis simply because it isn’t convenient to you. In the end, you can’t sit on your ass in your office and see somebody once a week and then go home feeling like you have done good in the world. You haven’t. Anybody can do that.

If you want to help somebody, you have to make an effort. You have to try, even if you fail. You have to stay with the patient, through thick and thin. You cannot get rid of somebody simply because they are too hard.

 

At the bottom of this message was a number for the source of these policies, an Ari Levy, the Director of Programs for the Santa Clarita Child & Family Center. So I called him.

 

“Doctor Levy,” he answered the phone. Oh, a doctor. Of what, I wonder? Calling yourself a doctor, even if you actually have a PhD, is like buying a large sports car to make up for other deficiencies.

 

“Yes, hi. I am Michael Schofield, the father of Jani.” I have learned from past experience that it is better to start of pleasant. People tend to shut down when you are hostile. “I was wondering if we could schedule a meeting.”

 

“Why?” This surprised me. All these people do is take meetings, but his tone and the bluntness of his answer caught me off guard.

 

“Well, Jani has been receiving therapy from the Child & Family Center for almost two years now and we’ve had some issues with the services in the past so I thought it might be good for us to sit down and make sure we are all on the same page.”

 

“What kind of issues?” It was becoming clear to me that this Ari Levy thought he could just blow me off.

 

“Well, yesterday, while waiting for her appointment with her therapist, my daughter took a sharp piece of metal and tried to cut her hands off. The staff did nothing. It’s not first time something like that has happened. A few months ago, Jani was pounding on the glass and we were afraid that she would put her hands through the glass. Again the staff did nothing.”

 

“Well, I don’t know too much about Jani, or her situation, or you, but I have read her file. Didn’t DMH (Department of Mental Health) recommend residential?”

 

“Would you send your eight year old child to residential, Mr. Levy?”

 

“I can’t say. I really can’t say. I would depend on the situation.”

 

Okay, Ari Leavy, either your commitment to your own children is paper thin or you are giving me the safe, bureaucratic answer. I am guessing the latter. I have found that being a bureaucrat often destroys one’s ability to empathize with one’s fellow human beings.

 

“Well, it’s not something I am willing to do. The only residential placements we were offered were out of state.”

 

“Really? They offered you nothing in state?”

 

Is this guy really this stupid or is he just playing with me.

 

“Yes. The only two facilities who would take a girl her age turned her down.”

 

“Turned her down? Why?”

 

“They said she was ‘too staff intensive.’ Maryvale turned her down and Five Acres turned her down. Basically, she needs a one-to-one at all times, and right now that is us, her parents.”

 

“But the out-of-state facilities felt they could help her?”

 

A few days prior, I had learned about a 14 year old girl, the daughter of an old friend, who is currently in residential in Colorado at a Deveroux facility. Deveroux, it turns out, took her under false pretences. This girl has finally been diagnosed with schizophrenia (the previous diagnosis was bipolar with psychotic features). The girl is now on Clozaril, but so far she is not responding. When this girl has a psychotic episode, the staff try to put her in “time out” and she calls her mother, begging her to not let them do so. Because if you are being attacked by hallucinations, the worst thing you can do is put that person by themselves. Places like Deveroux are behavior modification centers, and as I discussed earlier, behavior modification does not work for severely mentally ill patients. So now Deveroux is telling this mother that they really can’t help her daughter. The mother wants to move her daughter back to California, but DMH won’t allow it.

 

That is why Jani will go to residential over my dead body. I am not going to hand her over to an organization that really doesn’t understand severe mental illness, who treats kids with schizophrenia like they are just “acting up.”

 

“I don’t think separating a young child from her family would be helpful,” I answered.

 

“Has it occurred to you that we may not be able to provide the services your daughter needs?”

 

I am well aware that he is suggesting that residential could “meet” Jani’s “needs” better than they could, but I am not going to send my daughter to residential just because the Santa Clarita Child & Family Center can’t meet her needs.

 

Try, for Christ’s sake.

 

“I mean,” he continued, “we can only provide the services we provide.”

 

“I understand that, but you are also the only game in town. As for Jani, we have gotten her therapist to agree to coordinate her vacation time with Jani’s other therapists so that not everyone is gone at the same time, so the next problem that I can see is Christmas. You are closed for a week and the school district is not obligated to provide anything during breaks. I realize money is tight, I work for the state myself, but would it be possible for you to set it up so Jani could see a therapist at the beginning of the Christmas week and then again at the end. That way she doesn’t go a full week without a session. It would require a little overtime but is that possible?”

 

I thought it was a reasonable request.

 

“Well, no.”

 

No! I was floored.

 

“We can’t just go outside of our existing programs.”

 

Oh, I see. So you won’t go the extra mile for sick little girl just so she can stay with her family and enjoy Christmas. I was really, really beginning to dislike Ari Levy.

 

“I understand you are making a choice not to send your daughter to residential…”

 

“It’s not a choice,” I cut him off. “A choice implies that you have at least two options. The only option DMH gave us was to send Jani to out of state residential. That’s not a choice. There has to be something between no services at all and residential. It’s the same complaint that I hear all the time from parents of mentally ill children in an online support group I set up.”

 

“You mentioned the other parents experience this problem,” he sounds like he doesn’t quite believe me that there are other parents like us and other kids like Jani out there. “What do they do?”

 

“Most of them leave the system. The pull back from agencies like yours because they get no actual help, just judgment. It was like when we had your WrapAround service. All they did was sit on our couch, sipping Starbucks, and telling us how to parent Jani when they even admitted they didn’t know anything about psychosis in children.”

 

“Let me put it this way, though. If you have a plumbing problem, you don’t call for a carpenter and expect him to fix the problem. You call a plumber.”

 

I can’t believe this. We are talking about a child, not home improvement.

 

“What if there is no plumber? Like I said, you are the only game in town. The biggest issue is that your programs are behavioral based and that doesn’t work for children with psychosis. Now, I would be willing to help train staff in how to deal with psychotic children.”

 

“That is a new program, though. Approval for that would have to come through DMH.”

 

“Well, who in your organization handles proposals to DMH?”

 

“Me. That’s my job.”

 

I almost laughed. “Okay, so why don’t we work on a proposal to DMH to create a new program that caters to children suffering from psychosis.”

 

‘Well, we could do that but creating new programs takes a long time, at least six months to a year. How does that help Jani now?”

 

“Maybe it doesn’t but it will help other kids and other families who are going to come after us. She isn’t the only one. More and more of your clientele are severely mentally ill and you need to come up with a way to adequately serve this population.

“Look, I know I sound flippant…” Yes, you do. I can tell he doesn’t believe me that there are more mentally ill kids in his agency right now and more on the way. He doesn’t believe that Jani represents the tip of the iceberg.

 

“but like I said, you don’t get a carpenter when you need a plumber.”

 

Is this the only metaphor this idiot knows?

 

“But when there is no plumber,” I answer, “then you have to get a carpenter. You get a carpenter and you teach him to be a plumber.”

 

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I used to be a dyed in the wool liberal, but there is a fatal flaw in public non-profit agencies like Santa Clarita Child & Family Center. Since their funding comes from the State government and not from those they “serve,” they are under no inherent pressure to do a better job. In private industry, in order to keep customers, you either have to create a better product or give better service than your competitors. You cannot ignore the needs of your customers because they are how you stay in business. But public agencies don’t have any competition. They win bids from the state. They are monopolies. Santa Clarita Child & Family Center is the only game in the Santa Clarita Valley. They have no competition driving them to be better. Second, their clients are often poor or, like us, lack choices because there is no other choice. This means that the Santa Clarita Child & Family Center can treat it clients like shit and get away with it, because if people get fed up and walk away, as they often do, as the mother of the girl in Colorado did, then what has the Santa Clarita Child & Family Center lost? Nothing. Their funding is still guaranteed by DMH. And all DMH cares about is keeping costs down.

 

The fundamental flaw in mental health in America is that nobody cares about customer service because the customer has no choice.

 

Four months ago, Susan and I participated in the NAMI/BringChange2Mind walk in Ventura County. It was a nice three mile walk along the beach and into the swamps where the Ventura River lets out into the sea.

 

What is the point of marching if no one is going to see you?

 

Did we march only to make ourselves feel better?

 

I am in a black depression because Jani is slipping and I am so attached her to that her mood is my mood. And I am depressed because it didn’t have to happen.

 

We should not be marching in swamps.

 

We should be marching on the Santa Clarita Child & Family Center. We should be marching on the Department of Mental Health. The fact that these organizations would throw away our children is morally wrong. They must change and we can change them. We outnumber them.

 

So I am going to set up my own march. If you are interested in joining me in the fight to give our children a decent life, email me and let me know. If enough of us march on DMH, they will have to take notice.

 

 

 

Also, the Jani Foundation now has a You Tube channel: www.youtube.com/janifoundation. We want this channel to showcase mentally ill children, both in good moments and in bad. Please consider sending in your videos and showing the world that your child exists. You can email videos to michaeljohnschofield@me.com. Please try to keep your video submissions short (under five minutes). We do have the ability to edit videos (Will Stenner, close friend and musician, will edit, blur out any faces of bystanders if necessary, and add music if you wish).

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20 comments on “Plumbers & Carpenters & Fighters

  1. I wish I was over there instead of on Long Island, because I would never give up on Jani. I’ve been dealing with bipolar since I was 17 (and really struggling with it for the past year) and I teach children with special needs. Mentally retarded students, yes, but my classroom is also a repository for emotionally disturbed students who need somewhere safe to be for awhile. You need to give children what they need, not what the system says they should get. It makes me furious the way the system treats you and Jani. If you for some reason move to Long Island, give me a call. I’m ready to fight.

  2. I’m only 1/3 of the way through this post, and I’ve opened a Word document to start writing my comment. Because yes, and yes, and yes. I’ve written so often about so many of these things.

    I’ve been accused of “making excuses” for killers, when really? I’m indicting society and the health care system that fails people every minute of every day. The vast majority of people with mental illness will never hurt anyone; they are far more likely to be victimized than to be perpetrators. But that fact alone does not mean that MI doesn’t sometimes drive its hostages to do unspeakable things.

    If a person has a seizure or stroke or heart attack while driving and causes a dozen deaths in the ensuing multi-car crash, do we all pile on the person who had a seizure/stroke/heart attack and vilify him or her? Of course not. MOST people who have seizures/strokes/heart attacks do not kill anyone when that happens to them, but if that does happen, it isn’t an excuse. It’s just a tragedy.

    WHY WHY WHY do we think that MI is any different?

    Because we want demons. We want to believe in evil. We never want to consider that that could be ME, or my child, spouse, friend who does that terrible thing.

    Cowards. We are cowards, until we are face-to-face with those demons and find out that there’s no demon, only a person whose brain is bent and broken. Then? It is impossible to condemn.

    And yes, the behaviorist model. We are so logical, so scientific, like a herd of Spocks believing, like it’s our life raft, that if X, then Y. Every time, for all people, in all situations. Child screaming in grocery = over-indulgent parents. Child being violent in school = lousy discipline (or over-exposure to violent media, or violence in the home, or whatever; as long as we can all believe there is a cause, a choice, a rational explanation besides bent and broken brain chemistry that came like a lightning bolt into the lives of very ordinary people).

    “If your child is violent, the parent must remove him or her from the premises.” So fucking helpful, right? Once again, it is us. Parents. All on us, filling in so many gaps that we’re stretched too thin to really be parents at all.

    I’ve written about all of this so often it’s a little silly to hijack your comments section to write it all again. I write a post recently called “If the Diagnosis Was Cancer” about booting kids out of programs (among other things) for symptoms of other illness, and it doesn’t happen. Only for MI and other behavior and emotion-based issues. No one kicks out a kid for symptoms of cancer.

    No one expects a kid with cancer to go home and “deal with it” for a week at Christmas. No one expects a kid with cancer to go live thousands of miles away, without her family.

    I went to my terrible, dark place not too long ago. You will rise out of it, but in the meantime? You’re not alone. Not ever. So many of us are thinking of you and caring about you, Jani, Susan, and Bodhi.

  3. Schizophrenia and Violence against Others
    Sorry to hear about your dark mood. We all have our days

    I’d like to point out the following recent study which debunks the pop myth about schizophrenia and killing strangers, and I hope you will point this out in the future:

    ScienceDaily (Oct. 12, 2009) — “A study initiated by a team of Sydney researchers published October 12 in the journal Schizophrenia Bulletin shows that homicides of strangers by people diagnosed with schizophrenia are exceptionally rare events. ” …

    “This study is an international collaboration with researchers in Canada, Finland and the Netherlands. An international multicentre study was necessary as there were so few stranger homicides by people with mental illness in NSW in the last 15 years.”
    [url]http://www.sciencedaily.com/releases/2009/10/091012084214.htm[/url]

    The antisocial personality is different from a schizophrenia case. In schizophrenia w/o dual diagnosis, the voices can say what they will, but they can’t push a conscious schizophrenic into anything drastic. However the same voices whispering to an asp can result in extreme violence due to asp not schizophrenia.

    This is why I believe “metacognitive training” is so important for schizophrenia – to become consciously alert to the voices, where they are coming from (me/disease), and their quality (bad/good). This requires thinking about one’s thinking or metacognition. I’m deeply involved in researching this and my own memoir, Hearing Voices: My Search for Logic in a Sea of Madness, will go into this deeply specifically for fellow schizophrenia patients. I’ll send you a copy when done. 🙂

    Take care, Ken

    Note from Michael: I agree, Ken, I just think this is harder for a child than an adult.


  4. i get what you mean.. i was in the child and adolescent mental health sevice(camhs) twice they were rubbish.. first time my gp sent me toa therapist and psychiatrist who put me on anti depressents.. then i od and got sectioned and sent to a mental hospital.. 2nd time i was sent back to camhs.. i got sent to a psychologist who tried to teach me dbt.. i was afraid to talk cause of the police had cameras and microphones everywhere.. i still dont talk.. i was only seeing her cause else i couldnt get back in to school.. i wanted to get back in to school.. i was out of school cause they couldnt cope with me cause i like jani had suicidal tendencies also i used to go out of school whenever i didnt feel safe… with out telling the teachers.. cause theyd tell the police.. id miss lessons… walk out of lessons.. couldnt sit still etc.. i did that before… in the end after a few months she started shouting at me to talk and if i didnt talk shed discontinue me.. i didnt talk and was discontinued.. the school found out and i was expelled.. i stayed out of the mental health system for over a yr.. i did nothing ii had no school.. i just sat in my room didnt eat much.. till i lost so much weight(the food was being poisoned) mum brought me to the gp again and got me sent to the adult mental health team to be re evaluated.. who have again diagnosed me with sz…
    im not sure if youll read this but i thought id add my experience with the camh system..

    Note from Michael: I sympathize. I don’t think screaming at someone to talk and then kicking them out when they don’t follow directions is particularly helpful. Practitioners need to build a sense of trust. If you didn’t want to talk to the psychologist the psychologist needed to just let you be until you felt like talking. That is why I don’t think “office visits” are a great idea. The psychologist needs to build a relationship with the patient and you don’t just do that in an office. Go for a walk together, have lunch, go bowling. Live and be friends. That is how you get someone to open up.

  5. Jani
    A difficult post to read. The videos were even more difficult to watch. I wish Susan hadn’t allowed Jani to get hold of that ratchet lock. Maybe Jani was in no danger but it gave me the shakes just the same. Not really criticizing–I know the stresses and needs you folks are under–I just found it difficult to watch. Maybe a march on that agency in Santa Claria is necessary, but I think enlisting Shari Roan would be a better source to apply pressure. Just wish I could do more.

    Note from Michael: Haven’t heard from Shari in a while. Not sure how she is doing; I hope well.

  6. Oh, Michael. I have read every single one of your posts starting from the beginning of the old blog at January First. I heard about Jani from some random post on MetaFilter maybe a little less than a year ago. Jani’s story for me was the beginning of an epic turning point in my life. Like her, I showed signs of disturbed thinking early on and it went unnoticed/ignored by EVERY SINGLE PERSON who was in charge of me, who was supposed to love me, who was supposed to treat me. I survived a lonely, turbulent childhood peppered with secretive parasuicidal behaviors. Then, when I was 16, my best friend Amy, who also had severe mental illness related issues and epilepsy, died of a seizure possibly self-inflicted through refusal of her medication. I don’t blame her, as her life sucked worse than mine and I wanted to die every day back then. The only good thing about it was that her death finally gave me a “reason” to be as ill as I was and I started treatment for the first time. Maybe I ought to say “good” a bit lightly, as the fact is nearly 10 years later I have swum through so many medications and diagnoses I can’t even name them all and I’m still not “fixed.” When I started reading about Jani I gradually made the decision to dump my meds, my therapists, my father and his poisonous hold on me, and try to figure this all out myself. I figured either I succeed, or I die. Both sound okay. And miraculously, the first is taking place, at least for now. It so much has to do with facing the fact that I was born this way, I am not a “neurotypical,” crazy things shall ensue, and I AM THE ONLY ONE WHO KNOWS ENOUGH OR CARES ENOUGH TO SAVE ME. Sometimes I really want to hurt myself. Sometimes I do hurt myself. Any time that I make the mistake of letting one of the “normals” in on my truth, I regret it. The fact is, I have been happier and more stable since I decided to give up on the system. But I wish I didn’t have to. Michael, I know you are crusading for children, but please remember also those of us who are still children inside, because our mental illness wasn’t properly treated and we didn’t have the chance to emotionally mature. You can be a histrionic man at times, and I don’t always agree with your conclusions, but you’ve done so much good and I hope you’ll keep at it. You’re called to this.

    Note from Michael: Wow. I don’t know what to say, in a good way. I am not offended at all. “Histrionic” is definitely me at times. I can’t say I blame you for giving up on the “system.” I suppose my hope is that I can get society to accept mental illness in much the same way that we accept cancer. Yes, we fight to stay alive, but we call cancer survivors “heroes,” as they are, but why don’t we acknowledge and respect those like you who do battle with their minds? You are a survivor and a hero as well, just as Jani is.

  7. by the way, I was having posting issues earlier which is why i submitted my comment so many times. i tried to contact both you and susan but both of your emails on this site are invalid according to gmail. i hope you will fix that and maybe make a more obvious way of seeing that a comment has posted. i was finally able to see some kind of confirmation when i opened this page in a different browser. very frustrating.

    Note from Michael: Unfortunately, I did not design the page, so I don’t know how to set up so you get confirmation that your comment is holding for moderation, but trust that it is. I wish I had a tech person to fix the bugs in this website but currently I don’t.

  8. I have had similar experiences with MH
    I couldn’t agree more with this blog post. It really makes me frustrated and upset when mental health doctors and hospitals act like they’re psychic and pretend there is really no problem. I have had similar experiences when trying to get help at both the local clinic and the hospital. I have found that when I have seen a psychiatrist at the hospital, she always acts like I am just acting out. She even went to the point of denying my diagnosis of schizophrenia, despite having three doctors diagnose me with it over the years.
    How can a doctor just minimize everything and laugh it off? It doesn’t make things any easier for me or even anyone else who has a serious mental illness.

    Note from Michael: I think we are so geared in our society to believe that everyone can control themselves that it is hard for people, even doctors, to accept, never having lived through this, that any sort of functioning is a huge victory. That is the difference between me and the “Mad Pride” movement. They say celebrate the mental illness, because they think it is just a definition. It isn’t. I say celebrate you all who fight against your illness everyday. You are my heroes.

  9. I agree with this a lot
    (I am sorry if this post appeared twice, I am new to this)

    I couldn’t agree more with this blog post. It really makes me frustrated and upset when mental health doctors and hospitals act like they’re psychic and pretend there is really no problem. I have had similar experiences when trying to get help at both the local clinic and the hospital. I have found that when I have seen a psychiatrist at the hospital, she always acts like I am just acting out. She even went to the point of denying my diagnosis of schizophrenia, despite having three doctors diagnose me with it over the years.
    How can a doctor just minimize everything and laugh it off? It doesn’t make things any easier for me or even anyone else who has a serious mental illness.

    Note from Michael: As Zell pointed out above, I just learned that the site gives you no confirmation that your comment was received, but trust me it is. I receive all comments.

  10. Metacognitive Training for Schizophrenic Children
    Hi, maybe your blog readers would be interested in this topic so I’ll post it as a comment instead of as a PM.

    Yea I agree about children being for the most part a harder case when it comes to metacognitive training. But some of the smarter ones will be able to understand some of it.

    A place I’d like to start for both older kids and adults is “Jani’s secret language” (JSL)

    [url]http://www.oprah.com/health/Understanding-Childhood-Schizophrenia-Video[/url] :

    Oprah rep: “Jani created a special language for her friends in Calalini.”
    On this video Jani says:

    Jani: “If I want to say “Where’s the dog?”

    I say “Dog lair barks.”

    Dog is “Where”
    Lair is “is”
    Barks is “the dog”

    Metacognition is simply thinking about ones thoughts and Jani is clearly doing that here. In logic, she has identified the three key, basic components for a proposition: the subject, class membership copula (is), and the predicate. She is thinking about her thoughts and changing them – within the logical rules – in other words she is thinking about her thinking! And she has figured out the 3 key building blocks of Aristotelian Classical Logic, as well as the modern, mathematical logic.

    So Jani might be a natural at metacognition or logic. My website will be up soon with more information on this metacognitive training for parents and patients alike. It would be most effective if it revolved around Jani’s Secret Language at the simple core. Make it easier to learn. Ken

    Note from Michael: Interesting, Ken.

  11. If I weren’t across the country, I would absolutely march with you! Believe it or not, you are helping to change the world’s attitude toward the mentally ill, even if it’s not always noticeable right now. Honestly, I used to think of people with schizophrenia as people to be feared and avoided (and mental illness runs in my family), but since I’ve started reading this blog, my entire perspective has changed, not only toward the mentally ill, but toward humans in general. I can never judge that which I haven’t lived, and I have so much admiration for fighters like Jani and your family who refuse to accept the world’s mediocrity and work so tirelessly to make it better. It’s the people who don’t accept the “choices” they are given who make progress.

    Also, happy late birthday to Jani!

  12. Being one myself, I thought part of being a dyed-in-the-wool liberal meant acknowledging when the system is broken. 😉

    Are you looking for a tech person right now? I have a friend who might be willing to volunteer.

    Note from Michael: Does he/she know Joomla? Feel free to email me at michaeljohnschofield@me.com

  13. I understand and agree with this completely. The problem of mental health services is not specific to just America either. I live in Canada and the first time I saw a psychiatrist was when my 2 high school counselors took me to the nearest adolescent psychiatric hospital. They practically begged the ER staff to admit me but in the end they didn’t (I saw a resident psych doctor who said I’d be ok and that he’d send a referral to another doctor). It took 4 months for me to see an actual psychiatrist who finally did admit me.

    Since then I’ve been shuffled off to several different therapists and been stuck with a doctor who won’t listen to a word I say (he was reading a newspaper once when I tried to talk to him). I occasionally feel like a sack of potatoes being thrown around.

    Note from Michael: This is exactly what I am talking about. Working with the mentally ill cannot simply be a “job.” It is a commitment.

  14. single mom of 2
    Hi Michael,
    I always love reading your words. You are a gifted writer and spokesperson. You express our life here in Buffalo. Just last weekend I called a “crisis services” entity at 7AM and I was waking the person up.. He called me back a half hour later. I didn’t answer the phone. I have so many experiences so very very similar to what you and Susan and your children go through. Recently I started thinking my son was going to have to placed in a facility but the truth is I hate all the @#!%^ interaction with the “professionals”. I have lived what you describe. My son has 4 definitive mental health dxes and takes 3 medications. he also has features of autism and post traumatic stress. When he was hospitalized for 3 months upon admission I was handed a book titled “Common Sense Parenting”. It goes on and on and on. The ignorance and the arrogance.
    I would join you Michael but I am here in the East also struggling with money and 2 special needs children. I sit here on the verge of tears yet I keep fighting for family. Like yourself, I am no longer the person I once was. There has been a loss of innocence. The loss is greater and more painful because those that are supposed to help seem more committed to their positions and their employers than those that are suffering. I have met a most grotesque indifference too many times.
    Keep writing and sharing. Each and every time I read your words I am seen and I know my son, my daughter and I are not alone. Thank you.

    Note from Michael: No, you are not alone. Glad you are in the group.

  15. eip
    i wanted to ask is jani with an eip team(early intervention in psychosis team) most towns in the uk have them im not sure about the us though.. just they might be able to help jani better than the child and adolescent team.. since they are only for people with psychosis they are better equipt

    Note from Michael: These teams sound great but unfortunately no they do not exist in the US. We have crisis teams, if you can find them, in LA County but they are only for emergencies.

  16. Imaginary friends
    Hi Michael,
    I’ve posted many times on your blogs. I wanted to share something that gave me chills when I heard it. (in a good way) The story is kind of long if I add all the details, so I’m going to just shorten things and hopefully it will still have the same impact. A man named Greg has been raising his son Steven(now 13 yrs old) by himself after his wife left because she couldn’t take it any more. At the age of 8 Steven was in and out of the mental health (or lack there of) system. He was finally diagnosed with schizophrenia at the age of 10. His behavior mimics Jani’s. Withdrawn from others. Has several friends that no one else can see. 2 are very mean and Steven has acted out after saying “Marty hates you”, then shoves the person, usually his father Greg. Greg never directly talked to his imaginery friends. He would talk to Steven who was talking about them, or talking to them. Until one night when Greg told Steven it was time for dinner. Without warning, Steven walked towards Greg and said “We hate you!” and shoved his father. Steven laughed as he talked to Marty and other friends. It caught Greg off guard and he fell to his knees. Hearing Steven laughing and carrying on with non-existent people was the straw that broke the camels back. Greg stood up and firmly pushed Steven down into the chair that he was standing by. Greg’s years of frustration, devotion, and endless doors closing in his childs face came to the surface. Greg began yelling out into the room, directly at Marty and the other friends that Steven could only see. Steven sat silent. Greg had slowly watched his son slip further away throughout the years. He ranted at these friends as if he was looking at them. Calling them out by name. Making it clear that he was NOT afraid of any of them. That Steven was HIS son and NO ONE comes between them. NO ONE. As Greg began to calm down,he realized that Steven never said a word during that 20 minute rant. Greg wasn’t sure what to say at this point. He lost his cool, but he also didn’t regret it. It was a long time coming. Greg knows that it’s not Steven making up these people. He knows that Steven see’s them. He told Steven that he needed to get cleaned up for dinner. Greg went back to the kitchen. He said Steven’s shove really had strength behind it. He never wants to fear his son, but he honestly couldn’t say he didn’t. This happened 3 years ago, Steven is now 13. Greg said ever since that day he yelled at Steven’s friends there has been small positive changes in Steven. Greg kept saying that he could see Steven’s friends as he was yelling into the empty room. He knew that he’d never see those imaginery friends but he wanted to plant a seed in Steven’s mind that yes he could see his friends. Greg said that he’s spent years, and thousands of dollars paying experts who told him not to acknowledge non-existent friends. By doing the opposite while he was so angry that day, and by yelling into the room and not at Steven, seems to have triggered new behavior from Steven. He’s never shoved his father again, after that day. He’s never said WE HATE YOU since that day. Greg now regularly speaks out into the room and directing comments at the names that Steven calls them. Not conversations with them, but comments directed at them to let them know that he’s aware that they’re in the room. Things like, “I’m watching you too Marty”. Greg said that he doesn’t know if what he’s doing is a good idea or not. But he does know that it’s been 3 years since that incident and he’s never been shoved again. Im curious if you’ve ever approached Jani’s numbered friends and if so how Jani reacts to it.
    I got the chills from Greg’s story. Instead of refusing to see, or accept Steven’s friends Greg’s boiling point actually turned out to be a good thing for them. Like he says…….everything is one day at a time.

    Note from Michael: Interesting. I don’t know that I have ever directly challenged Jani’s hallucinations in that way, speaking directly to them. I speak to Jani about them, and I acknowledge that they are real, and I will talk with her about them as if they are real. I suppose the reason I haven’t gotten to the place Greg got to is because so far her hallucinations haven’t directly come after me. Jani’s affection for me seems to keep them in check. They also haven’t entirely separated from Jani yet, so we haven’t experienced “We hate you” only “I hate you,” so it is difficult to verbally lash out at that which still appears to be my daughter. Steven’s hallucinations seem to be more distinct from Steven, while Jani’s are so deeply embedded within her. She will “talk” to them and “play” with them.

    Still, I send messages to the hallucinations through Jani and “they” know they have to walk a fine line. It is very much a cold war. Thorazine remains the strongest weapon against them. It won’t make them go away permanently but it seriously inhibits their ability to break through. So I get the sense that “they” are a little afraid of me because they know that if they push too far, Jani gets a thorazine. They know there is only so far I will let them go.

    But I may try Greg’s idea, particularly the next time “the Nothings” are attacking Jani, biting her and scratching her.

    I certainly agree with his decision not to be afraid of them. You can’t be. You have to let the hallucinations know that they have to share. You aren’t going anywhere. Because isolation is their goal. They want to drive all flesh and blood people away.

  17. There is HOPE I am LIVING PROOF
    Believe me I know how U feel. I have been hospitalized and diagnosed as schizephrenic. I saw many things people around coul not. I have been so depressed I have attempted suicide multiple times. So telling what I’ve been through there is a way out there is hope. I have seen the light. I have not been depressed ever since I have seen it! I have been SAVED!!! And I believe Jani and Ur family can be too. “When I said, “My foot is slipping,” your love, O LORD, supported me. When anxiety was great within me, your consolation brought joy to my soul.”- Psalm 94:18-19 Dont deny God. Iam willing to answer Ur questions and let U know there is a way out. THERE IS HOPE. I AM LIVING PROOF. Please believe. God Bless.

    Note from Michael: I don’t “deny” God, but God expects us as humans to put in the work. Having a loved one with mental illness requires a level of faith, but that doesn’t mean that I am going to wait for God to “save” Jani. He expects us to do HIS work.

  18. Drowning and Psychosis
    Your description of psychosis is very powerful and reminded me of drowning. I had always believed the TV shows portrayal of drowning as someone out in the water struggling and yelling for help. So, I always figured the lifeguards were there to go save that person.

    However, just a month or two ago I read an article about what drowning truly looks and sounds like…and it is a silent event. There is no splashing and there is no yelling for help. The drowning person will be busy just trying to keep their mouth and nose above the water and they can’t splash or wave their arms because in this moment they are physically incapable of raising their arms.

    This made me realize the lifeguard’s duty isn’t to look for the loud and splashy drowners…no, they are there to watch for the silent ones whose heads are just bobbing in the water. They are drowning and nobody else around them will notice and they will slip silently underwater unless one knows the signs.

    To realize psychosis is the same as drowning was a powerful connection to me. Thank you so much for your words. Jani is so very blessed to have you and Susan as her lifeguards as you have taken the time to learn the signs and can respond appropriately.

    Note from Michael: I like that metaphor-looking for the silent ones. They are the ones that need help.

  19. Why were they at the appointment so early? I didn’t quite understand how you were blaming the schools as reason for being there early.

    Note from Michael: I don’t think I was blaming the school. You may be confusing Jani’s school with the Santa Clarita Child & Family Center, which are two separate entities. But to answer your question, they were there early because there was nothing else Susan could do to keep Jani engaged. When she is not engaged, she starts to slip into psychosis. Remember, Jani cannot play by herself or entertain herself. She must be stimulated at all times to hold off the psychosis. This is very exhausting as there is no downtime at all. Susan and I go with Jani from the moment she wakes up until the moment she falls asleep. Having to provide this level of stimulation is a massive strain and pretty much impossible for one person to do on his/her own.

  20. observation
    Just an observation about the video: I know you explain that psychosis doesn’t always mean a violent rage, but it didn’t seem like Jani was seriously trying to cut her hand off. She skimmed the object ( which appears plastic, but you say was metal) lightly over her arm, and then gave it back as soon as the receptionist asked for it. It was almost as if she was doing this for mom’s benefit–to reinforce her feeling of disapproval about the criteria for being admitted to UCLA ( immediate danger.) Otherwise, she just seemed a little impatient, but maybe if Susan wasn’t complaining about how the school system was “breaking the law,” how unfair it is that Jani can’t just be admitted, and repeating that Jani is “now in psychosis”, she wouldn’t have exhibited that behavioir. She seemed perfectly content to watch Toy Story but Susan just kept exacerbating the situation with complaints and comments. You said yourself that Jani is extremely sensitive to the moods of others, and it seemed that Jani was following Susan’s lead emotionally and with her behavior, which doesn’t really fit the description of “psychosis,” correct?
    Just my opinion.

    Note from Michael: I don’t know. Seeing my child trying to cut herself with anything, or even pretending to cut herself if that is what you want to call it, would scare the hell out of me as I don’t see too many kids “pretending” to cut their hands off in what appeared to me to be pretty serious. I would rather overreact than not.

    Also, psychosis goes in and out like the tide. I don’t know what you think psychosis is but someone can indeed be calm and even relaxed during a psychotic break. It isn’t always screaming at invisible people.

    And there is one other thing you are forgetting. We didn’t just decide to label her “psychotic.” Dr. Mark DeAntonio and a battery of psychiatrists at UCLA did. If you disagree with the diagnosis, you should take it up with them.