Month: April 2010

The Safety "Dance"

There are a few songs that when I hear them on the radio I can’t help but crank up the volume because the song is so infectious. And example is one of the more famous “one-hit wonder” songs of the 1980s, Canadian New Wave band Men Without Hats’ “The Safety Dance.” The song’s melody is bouncy, but its lyrical content and Ivan Doroschuk’s deep baritone make it also somewhat threatening at the same time. The emotional response the song produces in me is one that I can best describe as “euphoric rebellion.” It makes me want to tell the world to go to hell, not out of a sense of antipathy, but out of desire for freedom from judgment. Not surprising, considering the song is in fact a “protest song.” Men Without Hats have become an 80s punchline, largely due to the ridiculous video for “The Safety Dance,” but like all New Wave bands, their origins come from punk. And punk is nothing if not defiant.

 

The meaning of the song is often attributed to protest against nuclear war, very much on the minds of listeners in the early Eighties. However, this is not true. The lyrics of the song refer to a particular type of dancing called “pogoing,” a form of New Wave dancing that was born in clubs as Disco was dying in the late Seventies. Disco dancing required having a partner, which therefore required the dancers have sufficient space on the dance floor to move together. Pogoing, on the other hand, like all New Wave dancing, was done alone. It involved standing in one place, keeping your feet planted and torso rigid, and thrashing your arms about or twisting your upper body in different directions without moving your lower body. The effect produced looked like a person bouncing their head, chest, and arms back and forth like a pogo, hence the name.

 

To Disco club bouncers who had never seen pogoing before and knew nothing about it, it looked extremely dangerous, particularly as pogo dancers would occasionally, but unintentionally, bounce into one another or strike one another with their thrashing arms. Therefore they would tell pogoers to stop or be thrown out of the club. The Men Without Hats song “The Safety Dance” is actually a protest against this practice of bouncers stopping pogo dancers for fear that they would make contact with and hurt another dancer. The lyrics “Everybody look at your hands” in the chorus refer to bouncer demands that pogoers watch their hands and arms while dancing to avoid contact. Nonetheless, the song exhorts its listeners that they should be “taking the chance” even though “Everything is out of control.”

 

So basically the song is saying we need to dance despite the risk of violence.

 

Violence.

 

Violence produces one of two emotional reactions: anger or fear. These two emotions are designed to trigger one of our two basic human drives: fight or flight. If you are going to stand your ground and fight, you need enough anger to overwhelm the natural animalistic aversion to pain. Your brain knows that injury is likely and therefore pumps your body so full of adrenalin and endorphins that your nerve endings are overwhelmed and cannot respond to inflicted pain. If you are going to run, you are going to need the same adrenalin and endorphins to allow the nerves in your nervous system to ignore the excruciating pain caused by your lungs’ inability to draw enough oxygen to prevent the buildup of lactic acid in your muscles. This why seconds after you stop running in fear because you feel you are far enough removed from the threat, it suddenly feels like your muscles are on fire. They have literally been burned by an overabundance of lactic acid.

 

Despite our human history being filled with warfare, we are, by nature, wired to avoid violence because violence decreases our chances of survival. We don’t go around killing each other, not because of an external sense of religious morality, but because constant violence makes survival exceptionally difficult.

 

Therefore violence is not intrinsic to our nature and is typically, in rational people, only initiated when we perceive our survival is threatened.

 

If you subscribe to this view that rational people will only become violent when they perceive their survival to be threatened, then the concept of making violent acts illegal is largely redundant, as we are already wired, if rational, to avoid violence. Therefore, it can be argued that acts of violence that are “unprovoked” are in fact irrational, or essentially “psychopathic.” In common culture we tend to use the term “psychopathic” to refer to those who commit irrational acts of horrific violence, although quite literally the term refers to any person who performs an act which reveals a failure of rational thought and can be traced to a “pathology” within the brain. To put it more simply, “psychopathic” is a known or unknown pathology (disease process) within the brain (the psyche).

 

Thanks to Hollywood films like Psycho and 80s slasher films like The Texas Chainsaw Massacre, Halloween, or Friday the 13th, the “psychopath” is portrayed as a victim of psychological trauma who is mindlessly compelled to carry out acts of violence against innocents who had nothing to do with the original trauma. In truth, psychopaths are neither mindless nor generally the victims of trauma. Media stories of serial killers tend to focus on elements of childhood “difference” that could be the cause of their crimes, ignoring the millions who experience similar upbringings but never become killers. The media does this because, as I said earlier, we are not intrinsically violent; therefore it is natural for us as humans to look for a “logical” cause for such unprovoked violence. Therefore the slightest “oddity” in a serial killer’s upbringing is latched onto as the “cause.”

 

I guarantee you that if any of us were to suddenly kill a half a dozen people at random, something “odd” or “different” about us would be found in our background that “foreshadowed” our descent into madness.

 

Since Jani’s story first became public, I have been criticized several times by adult sufferers of mental illness, particularly adult schizophrenics, because they perceive me as perpetuating the stigma that schizophrenics are violent and therefore a danger to those around them. I do actually get where they are coming from. Schizophrenia, like most mental illnesses, is so misunderstood by the general public that the last thing a person with schizophrenia, who is only trying to function, needs is to suddenly find themselves isolated because those around them thing they might be in danger from sudden and unpredictable outbursts of violence. I understand. They tell me that those with schizophrenia are far more likely to suffer violence at the hands of others than to hurt someone else, and this is without question true… for the general population. But what these adult sufferers of schizophrenia so worried about the stigma don’t realize is that this maxim does not hold true for caregivers of those with schizophrenia. If you live with someone who has schizophrenia, you almost certainly will get hurt at some point.

 

Notice I didn’t say “killed.” What those protesting the stigma of schizophrenia are really upset about is the perception that schizophrenics can be fatally violent. To themselves, yes. If you love or care for somebody with schizophrenia, you have to worry about them killing or harming themselves severely all the time. That is, hopefully, what the medications are designed to prevent, or at least lessen the likelihood of this happening.

 

But caretakers of those afflicted with schizophrenia, because we have to try and come between our loved one and his/her illness, are often the target of violence. It isn’t intentional. When Jani turns violent on a dime, as she can, she doesn’t mean to.  It is the same basic fight or flight response that we all have, yet it is being controlled by something else. When Jani becomes violent, she is not herself. It is as if another force has, for a brief moment, taken control of Jani’s body and is initiating the fight or flight response based on a perceived threat. The only problem is that the threat isn’t “real,” at least to us.  “Fight or flight” response is located in the lower brain, but it must be initiated by the pre-frontal cortex, or the “thinking brain.” With Jani and those like her, periodically the diseased part of the brain which responds to the hallucinations triggers the fight or flight response, resulting either in violence against whatever the psychosis perceives as a threat (often the caregiver) or a desire to do something dangerous (a misfire of the “flight” response) in which anybody trying to stop Jani from harming herself or putting herself at risk will also become the target of violence simply because that person (usually the caregiver again) is preventing Jani from carrying out her “flight” response. The upshot is that caregivers to mentally ill children and adults can be the targets of violence simply because they have to, by nature of their job as parents or other caregivers, come between the child and whatever the psychosis is driving the child to do.

 

Susan and I and every parent of a mentally ill child I have ever known get hurt because we get in the middle between our children and their psychosis, which is like walking across the no man’s land between two warring armies. You are going to get hit in the crossfire.

 

Everyday, we parents must come between our child and that which is why trying to harm them and so by default that which is trying to harm them, once prevented from doing so, will turn on us. We know it isn’t our children trying to hurt us, or our brothers, sisters, or parents. It is the psychosis. It is the disease.

And since you can’t kill the disease without killing the person it inhabits, you have to, as a caregiver, accept a little collateral damage. That is if you want to keep being a caregiver.

 

I am all for fighting stigma, but simply trying to fight the stigma that mentally ill people are violent doesn’t help anyone, least of all those who are mentally ill, because it plays into the very stigma it is trying fight. The true stigma that we need to be fighting is that the stigma that prevents mentally ill children and adults from getting the help they need, which is the fear of being on the receiving end of a violent psychotic episode. It is the fear we need to fight against, because it is that fear that allows social services to deny care to children and adults with mental illness.

 

From what I have been able to gather, the primary reason that Jani’s intern program was shut down was concerns for the safety of the interns. Mostly this was because one of our former interns, unbeknownst to us, had gone to work with another child, a child who was significantly less stable than Jani. This intern was then left alone with the child, which should not have happened. It took many months before we and the interns felt comfortable enough to let Jani go with them alone. I say “comfortable” in the loosest sense of the word because I was never truly comfortable, which is in no way a reflection on the interns. I am never comfortable when Jani is out of my sight because I am afraid if Jani has a psychotic episode, I will not be there to diffuse it. I will be trapped across town unable to respond to a crisis. With the first and second set of interns, either Susan or myself always rode shotgun. Eventually though, the interns got comfortable enough with Jani and Jani got comfortable enough with them and we got comfortable enough with the interns to allow Jani to occasionally go alone with them.

 

So this intern should not have been left alone with a child she knew nothing about. There seems to be a perception amongst the interns that quit that we forced or required this. We didn’t. We knew nothing about it. Had we known we would not have allowed the intern to put herself into that position.

 

But for whatever reason, this intern consented to be left alone with this child. Most likely she based this decision on having been alone with Jani without incident, but as I had warned the interns before, specifically in regards to Jani, never assume that how Jani is on one day or even in one moment will provide any sense of how she will be during the next visit or even the next moment. Psychosis, because it is not triggered by external factors, can come out of nowhere, which means that anybody who works with Jani can never let their guard down, even for a moment.

 

Jani’s apartment is devoid of all sharp objects. All cooking is done in Bodhi’s apartment, and even there the sharp knives are well out of easy access. We both keep Jani’s time in Bodhi’s apartment to a minimum and never, ever leave her alone with Bodhi, no matter how well she might be doing with Bodhi at that particular point in time. These are precautions that as a parent of child with psychosis you must take. Other parents I know have installed locks on doors to protect themselves or other family members, creating what is essentially a “panic room.” Others have siblings sleep in the parents’ bedroom. All of us in one way or another turn our homes into psych wards, doing our best to remove any dangers. For example, we have no glass in both apartments. Susan replaced all of our glass and glass cookware with plastic plates, bowls, and cups, purely as a precautionary measure.

 

From what I have been told, this girl’s house contained sharp objects, including knives and scissors. We have heard conflicting stories about what happened, ranging from the girl came after the intern with sharp scissors to the girl threw books, toys, and furniture at the intern. The intern was forced to call the police and paramedics.

 

Six days after this incident, I met this girl along with Jani at a park. At that time, she appeared largely “normal.” However, I have no doubt that the intern was the target of violence because that is how psychosis works. I am sure if I am around this girl enough, eventually I will be a target, too. In fact, this weekend the girl’s grandmother is supposed to go on Susan’s radio show and I am supposed to watch this girl. Along with Jani, Bodhi, and two interns who stuck with us. And the more I think about it, the less I think it is a good idea. It is not that I have any fear for myself. If something goes wrong, I could send Jani and Bodhi with the interns but that would leave me alone, in public, with a girl whom I do not know how she will react if I have to restrain her. You can imagine what it would look like to see a grown man trying to restrain a girl screaming for help. It is recipe for me ending up in the back of a police car.

 

Now Jani will be there as well, as historically psychotic children seem to do well together. But I know Jani like the back of my hand. I know how to work her down from a psychotic episode. It involves staying calm and continually offering solutions. With someone in a psychotic state, you have to be able to look into the abyss without it swallowing you up. You can’t get scared. You can’t get angry. You have to stay calm no matter how out of the control the person is getting.

 

But you have to know enough about the person to know potential triggers. You have to know what relieves stress. And you have to be in an environment where you have some control over the situation, at the very least what we parents of mentally ill or spectrum kids call an “exit strategy,” in other words “if things go bad how the hell do we get them out there?”

 

With other people’s mentally ill or spectrum kids my general course of action is to do what would give a straight behaviorist conniption fits: I give in. Basically, I let them have whatever they want in order to keep their stress level low so they don’t blow. Yes, you have to teach your kids, even mentally ill ones, to deal with disappointment but there is a time and a place. Most parents can say “no” to their kids in a public place without having to worry about the child becoming violent. And we are not talking tantrums here. We are talking full-on gouge your eyes out violence.

 

Jani’s history of violence has been covered in every media story about her, yet people are always surprised by it when it finally rears its ugly head. Partly this is because most of the time Jani is a sweet and wonderful, if a bit eccentric, child. Partly it is because you can never understand the nature of psychosis until you actually see somebody suddenly go into a psychotic state. And partly because you just can’t conceive of the violence until you are on the receiving end of it.

 

And then as soon as it came, it is over, and Jani remembers nothing. She can tell from your demeanor that she did something wrong but if you ask her what she did she will guess.

 

And she always “I hit,” even if she didn’t. Because that is her default response.

 

So the professor shut down the intern program, fearing for the safety of her interns (there was also an earlier incident where Jani attacked an intern because she was trying to stop Jani from punching her fist through glass). It is her obligation to put the safety of her interns first.

 

I get that and do not criticize her for it. As a college instructor myself, I am also responsible for the safety of my students. No college intern program can knowingly put its students into a situation where they might be in danger, at least not at the undergraduate level. At the graduate level they can but only if the student signs a waiver releasing the university of liability should the student be injured or killed. Otherwise, any time a student is on campus or conducting university business, the university is responsible for that student’s safety.

 

So the fatal flaw in the intern program that we had planned as the cornerstone of the Village Project (soon to be renamed) turned out to be that in the process of assisting a family with a mentally ill child, the intern or interns can get hurt.

 

But here is the kicker: We had to create the intern program in the first place because the Wraparound Team from the Santa Clarita Child & Family Center said exactly the same thing: they had to protect the safety of their “team.” And these are supposedly trained professionals.

 

I would not expect college interns to be able to stand firm in the face of psychotic violence, but what is a family with a mentally ill child to do if the trained professionals from the Department of Mental Health and their contracted agencies won’t put themselves at risk either? This was also one of the reasons why Maryvale, a “psychiatric residential facility,” would not take Jani. Just Deveroux in Texas where they respond to psychotic violence with force, in the same way prison guards respond to riots.

 

No, individuals with schizophrenia are not a danger to society. Yes, they are more a danger to themselves. But in order to prevent them from harming themselves requires putting oneself at a level of risk, even if you don’t use restraints (which should always be the last resort and only done by trained professionals under observation by supervisors).  Most of the time, I can talk Jani out of a violent state, although I take a few lumps in the process. The best way to bring someone out of a psychotic state is to be in the room with them, speaking calmly. But that requires opening yourself to risk.

 

If you are a parent of a mentally ill child, you have to do this. You were drafted the moment your child was born. But if you don’t have a child who is mentally ill, or a family member you care for, you are a volunteer. Even if you are a paid therapist, psychiatrist, psychologist, MFT, social worker, etc, you are still a volunteer.

 

Working with those who suffer from psychosis is not for everybody.

 

Just like the Army, it is your choice to sign up or not.

 

But don’t enlist if you aren’t prepared to go to war.

 

[video:

100×100]

 

 

One Giant Leap/Leaving Broken Hearts Behind

Every time Jani is released from UCLA, within a day or two my cell phone rings. I recognize the number immediately. Unlike bill collectors, particularly credit card companies, who have a system which can route calls through a number of calling centers so that the same number doesn’t always show up on your caller ID, insurance companies, having no need to conceal their identity, always show up as the same number. This number, which has a San Diego area code, belongs to Blue Shield’s mental health discharge line.

 

The irony is that Blue Shield never calls before the crisis that precedes a hospitalization. But once your child is out, they won’t stop calling until they get a hold of me.

 

The reason they call, of course, following Jani’s release is to protect their investment. They have just invested yet again a sizable sum during Jani’s hospitalization and they want to make sure I am taking care of that investment. Ostensibly, the care advocate calls to make sure that I have scheduled appointments for Jani with her outpatient psychiatrist and therapist (yes). Blue Shield knows this, of course. By this time, two years into our relationship and for them approximately $150,000 dollars in inpatient hospital bills (which would be closer to one million if not for the “contract rate” that limits what UCLA can be compensated for) later, they are well aware that there is no need to chase us up on Jani’s “aftercare.” They are well aware that we are not simply going to forget to follow up with Jani’s psychiatrist and therapist. Their purpose in verifying this is not a nefarious one. They are trying to prevent another hospitalization (and having to spend more money) by making sure that Jani has a support system in place to keep her out of the hospital.

 

I don’t know whether outpatient psychiatric visits, medications, and therapy sessions are usually enough for most to stay stable enough to avoid needing acute hospitalizations. In adults, maybe, although I doubt it. With kids, whose psychosis is far less predictable than in adults, definitely not. Over the long term, insurance companies would save themselves a lot of money if they would consent to pay for longer term hospitalizations that allowed for intensive inpatient observation and treatment. Instead, the “turn and burn” philosophy, as I have nicknamed it, where at the first sign of stabilization the patient is shown the door, means that the stabilization is often so tenuous that it barely survives a few hours in the real world. So the insurance companies answer to this is to raise the threshold for inpatient admission as high as they can, beyond an episode of violence or even a potential risk to the patient’s safety, to make it that much harder to get back in.

 

Every time Jani has gone back to UCLA, regardless of what state she is in, the doctors have had to fight with Blue Shield just to justify her inpatient admission. Hospital doctors spend half their working hours on the phone to the insurance company. Explain it to the parents? Forget it! No time. We have to explain to the folks paying the bills. The only way in America to truly control your own health care is if you are wealthy enough to pay out of pocket. Like everything else in life, if somebody else is paying the bills, they own you (or so they think).

 

I don’t think we have gotten that far away from slavery after all. It’s just that instead of a whip, they hold your life (or your child’s life) in their hands through their control of the purse strings.

 

For the hospital, “turn and burn” means that beds become available faster. There is in the United States, a staggering shortage of beds available for mentally ill patients. ULCA has a combined 19 in their acute/swing units, which is actually a high number dedicated just to those under the age of 18. Still, an empty bed isn’t going to make any money, so you have to fill it with whomever has the best insurance. Since insurance companies are usually looser with the purse strings in the first three days of an acute hospitalization, UCLA, like every other hospital, knows the longer a child stays in a bed, the lower the amount of payment that the insurance company is willing to pay. By the end of a week, insurance companies want results or they will cut off payment. So back out into the world go our children. This is also why the dirty secret of inpatient psychiatric care is that hospitals such as UCLA will release mentally ill children after one week, knowing that they will most likely return, because when they do, it’s a whole new insurance claim. Rather than fight for more time from the insurance carrier, the hospital would rather release and then readmit and thereby start the clock countdown all over again, giving themselves another few days where they don’t have to justify why the child is inpatient.

 

By now, UCLA knows our insurance, so Jani getting a bed is dependent on whether the doctors think they can convince Blue Shield that she needs acute hospitalization. For the rest of you trying to get into UCLA for the first time, you will be told that there are no beds available… until they verify your insurance benefits, what those benefits will pay for, and, based on prior experience with this insurance company, how long they have to treat your child.

 

Most people won’t tell you this stuff. I will because nothing will change unless somebody drags into the light, somebody who is not beholden to anyone.

 

And that is me. I am not beholden to anyone but Jani and Susan and Bodhi. Nobody pays me, so nobody owns me.

 

So, like usual after Jani’s last discharge, I got a phone call from the care advocate at Blue Shield (who is a very nice person I have to say). Actually, in this particular case, I was returning her call.

 

“Hi________________, this Michael Schofield.”

 

“Oh, hi, Mr. Schofield! I’m so glad you called! How are you doing?”

 

The “how are you doing?” seems very innocent, and to some extent it is. It is force of habit. We say it without thinking to be polite. But in this case, it is also a loaded question. If you are working on a deadline and your boss asks you how you are doing, what do you say? Yes, your boss may be a very nice individual concerned with your psychological state, but you also know that when you get asked that question by somebody who has power over you in some way, you are also being evaluated.

 

You are being profiled, your emotional and psychological state evaluated. It is the equivalent of being asked to walk a straight line if you’ve been pulled over for suspected DUI (which I never have because I don’t drink).

 

I can’t lie, of course, and say everything is fine, and I don’t. I always tell the truth.

 

“I am fine, all things considered,” which translates to “I am functioning.”

 

A parent of a child with cancer or some other serious, chronic illness can lose it and everybody will understand. But if you are the parent of a mentally ill child, everything you say and everything you do is evaluated. That is the legacy of the behavioral model of child psychiatry. Although the biomedical model has pretty much supplanted it, it still survives in the subconscious of every mental health provider: that the environment of the child is the primary cause of any “behavioral problem.” Parents of autistic children have fought this for years and have succeeded in making autism a social acceptable illness. Mental illness is still not socially acceptable, not yet. You still don’t see supermarkets raising money to support mental health research, although at my local Albertson’s, along with the annual March of Dimes drive, they now raise money for Autism Speaks. I admire very much what Autism Speaks has been able to do. It took them nearly thirty years to do it, but they consolidated the various autism advocacy groups under a single banner and forced the medical community to eventually acknowledge autism as a real disease.

 

At one time, autistic parents were blamed for their child’s condition but that is almost gone now. Still, what Autism Speaks proves is that you can, eventually, convince the general public that anti-social behavior is not the result of environmental factors.

 

With childhood mental illness, however, this idea persists, albeit in a weakened form. Partly this is because anti-psychotics do not work nearly as well in children as they do in adults. The meds are far more effective in stabilizing adults than they are with children. Some use this as justification that illnesses like bipolar and schizophrenia simply do not exist in children, otherwise the medications would work. But for those of us who are parents or caretakers of a mentally ill child or children, we see it everyday.  The truth is that researchers don’t know why anti-psychotics are not as effective in children as they are in adults, but they do know that the symptoms don’t abruptly stop with the onset of puberty or adulthood. Moreover, they also know that eventually, meds that didn’t work when the child was seven suddenly start working at sixteen.

 

Doctors at UCLA acknowledge, thankfully, that they are very much aware that the child they see on the inpatient unit is not the same child the parent sees at home. They acknowledge that the parent lives with the child’s mental illness everyday, in the real world, while they only see tiny aspects of the mental illness when in a heavily structured and controlled (and stress-free) environment. They are aware that as soon as most kids come on the unit, they calm down pretty quickly, usually within a day or two, even without a change in medication.

 

Unfortunately, when a child’s behavior changes for the better when the child is removed from the parent, you can see how easy it is to believe that the parents are the cause of the behavior in the first place.

 

Which is why, as apologetic as they are about it, every time your mentally ill child goes inpatient, you will get interrogated. Or at least UCLA is apologetic with us because they have seen Jani for so long and have known us for so long. Other parents still get the third degree. God help you if you are single parent. That alone will be beaten to death as the cause of your child’s behavior.

 

Only problem is that millions of kids go through divorces and don’t become psychotic.

 

You can’t make somebody psychotic. You cannot make somebody see and hear and respond to something that isn’t really there.

 

Back to my phone conversation with the care advocate at Blue Shield. We dispensed with the usual “when is Jani’s next appointment with her psychiatrist and therapist” but of course she already knew that. It was in the UCLA discharge report, which they may or may not have received yet.

 

Then her tone changed, the tone one affects when you have to broach a difficult subject.

 

“Have you ever given any thought to what this is doing to your family?”

 

As soon as she said this, I instantly knew where this call was going. You see, everybody who has ever brought up placing Jani in residential, from the Department of Mental Health to UCLA to Blue Shield to the Santa Clarita Child & Family Center, does it exactly the same way. They never suggest it would be in Jani’s best interests. No. They suggest it would be in OUR best interests, that it would make OUR lives easier. I don’t know if they actually expect this pitch to work. Do they think we are so desperate that we will ship Jani off to residential just so we can have a life back again? It reminds me of the time a Army recruiter tried to recruit me by telling me how “fun” his tour in Iraq had been. Did he really expect that to work? Does that work on anyone?

 

If you want to recruit me into sending Jani out of state to residential, don’t try to sell me on how much better my life would be. I have already split my family into two apartments and sacrificed almost everything to keep Jani going. Do you really think appealing to my desire for escape is going to work?

 

Again, this is not to say that residential is a bad thing. I have many friends who do have children in residential (although much older than Jani) and they are thriving and I am always sensitive to the fact that these friends might perceive that I am attacking their decision. I am not. I am simply saying that as of yet nobody has said that sending Jani to residential at seven years old would be good for HER, only us.

 

Which makes me think that at seven years old there isn’t an argument as to why sending Jani to another state for residential care would be good for her, which is why they keep trying to sell it based on what it can do for us or Bodhi.

 

I told her that I think about what it does to my family everyday but that at the moment my family was fine.

 

“But isn’t your daughter constantly trying to attack her brother?”

 

Ah, the safety issue. If they can’t sell residential based on how it can make our lives ever so much more relaxing, they go to plan B, which is try to create fear that keeping Jani at home creates the risk of her seriously injuring or killing Bodhi.

 

Unfortunately, there is a line in the 20/20 episode where Jani tells Jay that she wants to hit Bodhi and then Jay voiceovers the fateful line “And she does, every chance she gets.”

 

I love Jay and the whole ABC team, but that was a bit of an exaggeration. Not a complete exaggeration, because at the time that that particular piece of video was shot, she was more likely to go after Bodhi. What isn’t in the video is what triggered her: Bodhi dropped her Slushy. Obviously, her chasing him down trying to hit him is an excessive reaction. But I was there. Susan was there. We stopped her and the video cuts out (for time reasons) before you see us calm her down by distracting her with something else.

 

Is Bodhi in danger from Jani. At one time yes, very much. Is he now? No. Most of the time, Jani is great with him. The care advocate asked me if Bodhi is afraid of his sister. Honestly, no, he isn’t. He still runs up to her when she comes over for dinner. But the reason Bodhi is not afraid of Jani is because WE have worked hard to prevent that. That is why we got the two apartments. We did that to minimize the risk and it has worked. The knives in Bodhi’s apartment (there are none in Jani’s) are up high. As soon as I use a knife for cooking, I immediately wash it and put it back up. Jani and Bodhi are never alone together. Either Susan or myself is always watching. When Jani is over at Bodhi’s apartment, we engage her in the process of cooking, which distracts her by keeping her busy. As soon as she starts to lose it, whoever is going to be the parent with her that night takes her back to her apartment.

We got the two apartments so Bodhi would not be in constant danger. And it has worked because every day Jani gets better and better with him. She is learning to deal with him. That does not mean we are going to let our vigilance down.

 

Then the care advocate tried the guilt trip of “Have you thought about what might happen if Jani hurts Bodhi severely or even kills him?”

 

Of course. That’s why we’ve done everything we have over the last year. Our entire lives are about keeping BOTH our children safe. But rather than compliment us on a novel solution, the care advocate keeps trying to instill fear.

 

Oh, by the way, does Blue Shield or UCLA or anyone else who encourages us to send Jani to residential ever offer a solution to get Jani the appropriate placement?

 

Of course not. Neither did the Department of Mental Health.

 

Fine. These groups are not going to help us. That’s okay. But they could at least acknowledge our novel solution. It isn’t perfect, but it has worked.

 

With brings me to the intern program. Yes, it is over. Yes, it was our primary means of support over these last several months (UCLA and DMH would always tell us we needed support but never offered any suggestions, so we went out and got our own).

 

My fear was that Jani had become so dependent on the interns that without them she would not be able to function.

 

The anger that I lashed out with in my last few blogs was driven by this fear. I had been afraid that the only thing between Jani and residential was her interns and now the interns had been taken away. The last line of defense we had against the residential option had been stripped away and now we would be left alone again.

 

I should have given Jani more credit than that. You would think that by now I would have learned to never underestimate Jani.

 

Jani hasn’t fallen apart at all. Since the end of the program, eight interns have not come for their regular shifts (some of which may still return-I am giving them time to decide), yet Jani has handled each missing intern very calmly without the slightest hint of panic she showed prior to the her last hospitalization. This is not to say that she will not ask, once, where the scheduled intern is. I don’t want her to think she is the cause of this so I tell her either the intern is sick or out of town. And Jani accepts this without issue.

 

Even more, the departure of many of the interns has given me and Jani time together alone that we haven’t had in months. And you know what? I am having a great time with her. I am teaching her how to be a vet. She will tell me that a “number” got run over and we will perform “surgery” on that number and watch over it in the imaginary ICU (a playground). Then we will go the shelter and discuss the condition of the animals. We even do therapy on the dogs and cats (Jani seems to enjoy being a kitty psychologist).

 

Today, at a park, when Jani and I were playing, she looked up and said “A little girl for me to play with!” And it was a real girl, although she was a teenager so I had to explain that to Jani, but the whole experience really made me feel hopeful. It means Jani is actively looking for girls her own age to play with.

 

One of the interns, before he left, said that we had started to use the intern program as a “crutch” and I now think there was some truth to what he said. He also said that he felt the intern program had served its purpose, which was to get Jani re-engaging and having fun with real people again. I think he was right again.

 

This is not to say that we never needed the interns. I in no way want to diminish the hard work they put in. They worked hard to engage Jani and they succeeded. I was afraid that in their absence Jani would immediately retreat back into her world, but she hasn’t.  The interns also gave us periodic breaks in the endless war against Jani’s schizophrenia and once I got past my anger, I realized that I felt more refreshed and invigorated than I have in months. In the end, a group of community college interns did what WrapAround could not: they actually helped us get on our feet.

 

So increasingly I am starting to look at the intern program’s ending not as a failure but as the natural conclusion of what was in fact a very successful program. Much more went right with the program than went wrong. I will take many positive lessons from this experience. The Glendale College intern program provided a model of what could be done. It showed that out of the box thinking could work. Was it without its faults? No, and neither were we, but the important thing is that it helped Jani, it helped us, and it showed what could be done.

 

Despite the abrupt end of the program, we have taken a step closer to the non-profit (formally the Village Project) that will assist other families with mentally ill children. We learned what we did right and what we did wrong. I don’t think the intern program as it existed will ever be entirely replaced. Apollo 8 orbited the moon, showing that we could send a manned craft around the moon and then recover it to earth, thereby paving the way for the eventual Apollo 11 landing.

 

The intern program was our Apollo 8. They showed us it could be done. They showed us that it is possible to create services for mentally children and their families from scratch.

 

They paved the way to the moon.

 

Now it is up to the rest of us to get there.

 

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Run Like Hell

“What we’ve got here is…failure to communicate. Some men you just can’t reach. So you get what we had here last week, which is the way he wants it… well, he gets it. I don’t like it any more than you men.” – “The Captain”  Cool Hand Luke 1967

 

The first line of the monologue above is one of the more famous movie lines ever uttered. In the scene in which appears, Luke has been returned to the chain gang after a brief but futile escape. Luke is in a situation where he has no power, but rather than accept it, he mocks the despotic Captain’s affectation of benevolence, which causes the Captain to lose control and strike Luke, sending him sliding down into a culvert where he lands in a heap. Recovering his composure, the Captain delivers the rest of his line, which for him encapsulates the problem: that look fails to understand that his social status as a prisoner means that communication goes only one way, from the person with power to the person without it.

 

The line has since entered our cultural awareness and is frequently used to mock the principal behind it: the refusal to agree to accept that which has power over you. Ironically, it is often used, semi-jokingly, by those who have the power when attempting to establish their perceived control over those who don’t.

 

There will only be a handful of times in your life where a person or institution will exert total control over you. The first is your parents. Certainly, parenting today is a far more democratic endeavor than it once was. Modern Western parents indulge their children, primarily out of love but partially because any parent, unless he or she is totalitarian, learns to pick their battles. Most parents, including us, will hold the line when the failure to behave is significantly damaging to the child’s functioning within society. In other words, parents punish to teach lessons that they feel are necessary for their child’s future development, not for strictly punitive reasons. Very few parents in the Western world today punish their children purely because the child has inconvenienced them. The metaphorical “rod” is used sparingly because most parents have no interest in suppressing their child’s uniqueness. So they will only act when the behavior is unacceptable to the larger society that the parent knows the child must one day function in. And because they know, even if they can’t articulate it, that if you don’t teach your children that there are some appropriate times to knuckle under authority, eventually some authority will destroy them.

 

The only thing is that child development research hasn’t quite found this model to be true. Most children learn what is appropriate to their station not by punishment for infractions. In fact, repeated punishment for infractions tends to produce the opposite reaction, as it did for Luke, where the child loses all hope of fitting in.

 

Or they are mentally ill.

 

Part of the reason that we admire social rebels so much is because most of us lack the courage to challenge the status quo. Biologically, it may be that subservience to authority is built it, as to a large extent it would be necessary for the survival of the species. Too much individuality would make it impossible for the tribe to function and ensure its survival. But if you observe a pre-school or kindergarten on the first day, you don’t see twenty kids running amuck. A few yes, but not all. Most young children accept authority from the earliest age. We tend to attribute this to “better breeding” as the English would call it, but the research doesn’t bear that out. Rather, it seems that some naturally accept authority and while others spend their entire lives struggling to accept the system. Whether the system is totalitarian has nothing to do with it. Neither does previous upbringing in “manners.” This would indicate that the tendency to comply and the compulsion to resist are caused by internal factors, not upbringing or the environment.

 

Statistically, the one or two kids who are struggle with authority in preschool continue to do so over the course of their academic and even adult lives.

 

Luke continues to try and escape the prison, not because his existence is unlivable but because he cannot accept the restrictions on his freedom, even when accepting the authority of the captain would give him a moderately better life. We love such movies because we feel the celebrate the human spirit’s refusal to wither in the face of totalitarianism, yet in reality the willingness to die for “freedom” is antithetical to our basic survival instinct. Therefore freedom fighters, unless they are fighting for their immediate survival or that of their loved ones, are, acting in a way contrary to their own survival and therefore are, by definition, mentally ill. To put it more bluntly, if you don’t have a reason to fight, you won’t. And if you do, if you fight when accepting the dominate power would improve the quality of your life, then you are not a “behavioral” problem but unable to think clearly, which is mental illness.

 

It would be much easier for Jani to go along with the program, whatever program that happens to be. The fact that she cannot no matter how many times she is punished reveals the inability to consciously remind herself of the connection between the action and consequence. So she acts because the compulsion overwhelms her logical ability to think out the consequences.

 

It is desire of all living creatures to control their environment. Humans simply have more brain capacity to be able to do so. You want to control your environment because it makes you feel safe. A side effect of being a parent or caregiver of someone who is mentally ill is that you become a dictator, but not a dictator to your mentally ill child. That can’t be done. When your child is mentally ill, the illness makes any attempt at absolute control futile. You cannot alter your child’s behavior because their illness experiences no consequences for its actions. One of the things that triggered Jani’s last return to UCLA was the fact that during a psychotic outburst, she repeatedly pounded her hand against a glass divider.  Pain is the body’s way of triggering a logical response that will force the individual away from that which is causing the pain. But for someone experiencing psychosis, the communication between the part of the body experiencing the pain and the cerebral cortex is overwhelmed by what the psychotic individual experiences as the greater pain within his/her own mind. The internal factors that are precipitating the violence overwhelms any external pain, which is also why restraining a psychotic individual is both dangerous to them and futile. If Jani injures herself to the point that she sees blood, she will snap back into reality. Otherwise, she will continue to injure herself until the internal forces are mitigated, usually through getting what she wants. To the outside observer, this looks like “bratty” behavior except that brats stop short of severely injuring themselves to get what they want, because we are wired not to seek pleasure at the expense of pain. If the negative consequences (injury) outweigh the reward, a neurotypical person will accept the restrictions. In other words, a neurotypical child will stop short of self-injury to get what they want, and we call that a tantrum. A child suffering psychosis will self-injure to get what they want, which is the relief of the internal damage going on within the mind. If somebody or something is attacking you inside your head, you only thought is to end that any way you can and children, like most humans, react to pain (which although phantom to us is very real to them) by doing whatever it takes to stop it. Ten years ago, during our honeymoon on the Tahitian island of Morrea, I began to experience an itchiness so bad it felt like the skin on my back was on fire. The sensation became so unbearable that I began to throw my back against a tile wall because the pain of the impact actually distracted me from the pain in my skin (it turned out to be a subdermal sunburn that caused my dermis to swell against the top layer of my skin).

 

Ultimately, mental illness is the one thing that you as the figure of authority cannot control. If you are not personally invested in the mentally ill person by blood, you give up. If it is your child, you become a dictator of the world around your child. Usually, you are a benevolent dictator. But if you perceive that your child’s wellbeing is threatened by the outer society, you, I, turn into a totalitarian dictator.

 

We are coming up on the one year anniversary of Susan’s idea to split our children into two apartments in order to keep Jani with us but still keep Bodhi safe. In military terms, it was like Greeks abandoning Athens to the destruction of the Persians in order to protect the Athenian population from an invader they could not defeat. As Jani’s parents, we made the decision to sacrifice certain aspects of our lives in order to ensure the survival of both our children. We let almost every other aspect of our lives, anything outside of Jani, burn to the ground. Like the Greeks, we knew by that time that we faced an enemy that we could not defeat outright so it was better to abandon the defense of our lives so that all four of us might live to fight another day.

 

But every time you accept that defeat is inevitable, you need something to give you hope. That is why when MacArthur abandoned the Philippines to the Japanese, he promised to return. Tactical retreats sting worse that total defeat, because you have to face the facts that you went up against the enemy with everything you had and lost. We retreated in the face of Jani’s illness into two apartments to buy time, hoping that as Jani got older, she would learn to better manage her illness and that perhaps the medications would in time have more effect.

 

But for me, accepting the permanent presence of Jani’s illness had a profound impact on me. Unable to control what was in Jani’s head, I responded by trying to control everything else around her. I began to operate like the US did in Vietnam. Unable to subdue the Vietcong, the US Army responded by laying waste to the surrounding countryside. Any village that could not be brought under the direct control of the US military was burned to the ground and its people relocated. If you can’t destroy the enemy, destroy anything the enemy can use.

 

This is what I did with the intern program. Initially, Susan and I were so grateful for any help that we did not place significant demands upon the first set of interns. Most of them ended up observing rather than actually participating in helping us with Jani, but for us it was the first friendly force we encountered, even if they were no more effective than the UN peacekeepers in Rwanda. We were fighting so many other things: Jani’s illness, Blue Shield, UCLA, that it was nice not to have another group of “unfriendlies.”

 

But by the time the second group of interns arrived on the scene in December of 2009, the situation on the ground had changed. We were starting to lose the war again against Jani’s schizophrenia. It was gaining ground and we were falling back. As a result, this time we demanded much more of the interns. We hadn’t expected the first group of interns to be actual combatants with us. With the second group, we expected them to actively participate in the war. Those that could not make the cut were fired by me at such a rapid pace that soon there was almost no one left. By December, winter, always Jani’s worst time, I could no longer tolerate observers. They were dead weight. I needed soldiers and if the intern wasn’t up to it or deviated in even the slightest way from my requirements, I canned them and sent them back to “the world” as soldiers in Vietnam used to call anywhere outside the War. The intern program almost died right there and would have had not the idea been hatched to put new interns through a one to three week observation period that would allow us to see if they were up to the job of keeping up with Jani. Therefore, we created what was probably the only college internship that had more in common with boot camp than a volunteer position. We actively worked to break down any prospective interns preconceived notions and rebuild them as we wanted them to be. We wanted interns who wouldn’t waste time trying to figure things out but would simply do what they were told to do, which is keep Jani safe and engage her mind to distract her from her hallucinations. The lead intern, the only survivor from the fall campaign, embraced the idea of teaching future interns how to work with a child suffering from psychosis.

 

And it worked beautifully. For four months, the number of interns who came to spend time with Jani grew from five to eighteen. The attrition rate dropped to zero. The interns became Jani’s friends, her only flesh and blood friends. The interns allowed me to go back to teaching, assured that Jani (and Bodhi) would be safe.

 

The revamped internship was so successful with Jani that we latched onto it as the basis of our future non-profit (currently named the Village Project but due to so many other non-profits having this same will soon change), believing that if we could replicate Jani’s intern program across the country, we could provide the badly needed support for families with mentally ill children that government social services seemed unable to do.

 

The passion of these interns and their commitment to Jani was infectious and I came to believe they could provide a cheap way to change the way we provide services to families with mentally ill children in America. I assumed they were all true believers and not only behind Jani but behind the cause she inspired-to provide in-home support to families with mentally ill children so that parents would one day no longer have to face the choice between sending their child to out of state residential or letting the child’s illness take down the rest of the family. In those two choices, the only two available today, everybody loses.

 

Then in the space of five days it all fell apart.

 

I am still not privy to all the details. The consequences seem inappropriately severe given the transgression, but maybe everybody reaches a point where they have to ensure their own survival first.

 

During Jani’s first day in UCLA, she had a roommate about her age. We met her caretaker, her grandmother. This girl was being released the day after Jani arrived. Thinking only of getting Jani a playmate, I left my card, not expecting the grandmother to call. Susan and I have given our cards to countless parents of kids in the UCLA psych ward. For me it is always that if I see Jani connect with a child on the unit, I am desperate to try and continue that on the outside. But most parents never call. Maybe they don’t want to be reminded of a painful chapter. Maybe they want to believe that their child is “fixed” now. Most likely, they want to return to the lives they had and are not ready to accept that Athens is already burning, the Persian Army is in the City, and as parents they will need all the allies they can get in what they have yet to realize is a lifetime fight. They will fight their child’s mental illness until the day they die, so their only chance at any life for their child is to find allies.

 

But this woman called. The girl was released on Friday. Like Jani, she needed long term stabilization but the insurance won’t allow it. So by Monday she was in crisis again. During her two days with Jani, the grandmother met several of our interns, who were required to keep coming to see Jani even when hospitalized. The grandmother connected with at least two. According to the grandmother, one of our interns agreed to work with the girl, not as an intern but as a paid babysitter, for lack of a better way to describe it. The other intern asked Susan if she could work with this girl as well. The lead intern asked Susan if I was okay with this and she said yes.

 

Like Oliver North, I have no recollection of that. I am being facetious, but if Susan really did ask me about it, I have no memory of it, as I would not have agreed to it. Yes, I want one day for the Village Project to provide interns to any family of a mentally ill child, but as of last Monday we were not yet ready.

 

Part of the problem with living in two apartments is that Susan and I often fail to communicate. This has frustrated even the media who have worked with us, for Susan will agree to something on my behalf and the crew will prepare, only to have me later contradict Susan’s agreement once I find out about it. Susan is the last to know what I am doing and I am the last to know what she is doing. Clearly, this lack of communication between us increasingly became a strain on the interns. What they didn’t realize is that it is difficult to for Susan and I to communicate face to face when we are never in the same place together. When we are, it is still difficult to communicate when Jani is pulling the collar of my shirt so strongly she is almost choking me because she wants to go (to move on to the next distraction from her hallucinations) and Bodhi is screaming his head off because he is in the terrible twos, which makes Jani scream and throw things at him, which forces me or Susan to rush Jani out of the location to protect Bodhi.  Not exactly an environment conducive to a productive conversation and one that is virtually impossible for us to make decisions together.

 

So I was not aware that Susan had allowed one of our interns to work with with this other child. At the same time, Susan was being bombarded by emails from desperate people several times a day, some from parents of mentally ill kids and some from adults who needed help. Susan’s Facebook status updates tend to be indictments of some kind of the failure of social support systems in America and so she attracts those who see her as some kind of potential savior who can ease their suffering. I would have no problem with this if we had the resources to help. But we don’t… yet. Susan is so eager to provide what social services and the Department of Mental Health have failed to provide that she makes promises of aid we cannot yet deliver on.

 

So she made the mistake of forwarding all these desperate people to our lead intern, giving them her Facebook account and her email.

 

I didn’t find out about this until after the fact, but which time the damage had already been done. The lead intern overloaded like a blown fuse and literally shut down, breaking off all contact with us.

 

Having no idea what had happened, I kept desperately trying to raise the lead intern by phone, text, and email, to no avail.  I knew something had gone terribly wrong but all I could do was leave messages assuring the lead intern that whatever it was we could fix it.

 

She never answered any of my requests for information. Eventually, I became so concerned that something that happened to her that I contacted the professor who had set the whole program up seven months earlier. I knew the lead intern had, like most of us, a history of depression and I was scared for her wellbeing, so I asked for her address, wanting to make sure she was okay.

 

The lead intern finally responded by unilaterally resigning. She gave no explanation in her resignation email.

 

Next I got an email from her professor, out of town on vacation, that she had spoken to the lead intern and that she was okay and that her reasons for resigning seemed sound. She too offered no further explanation, other than to say we could all meet in two days when she returned.

 

It was then that I realized that the lead intern was deliberately avoiding me.

 

But Jani was being released the next day and I needed my lead intern back because Jani needed her. So I kept calling and sending emails, ignoring the directions of the professor not to do so. Rather than let it go like I should have, I became increasingly angry at the silence of the lead intern, not sure what I had done to deserve it.

 

Finally, the night before Jani is released, she responds to one of my emails, saying she had been “too angry” to respond before then. I acknowledge that Susan made a mistake and stepped over the line, but my apology on Susan’s behalf is not accepted. Soon it becomes clear that Susan is not the focus of her anger: I am.

 

Emails continue back and forth and increasingly she begins to criticize me and Susan as parents. Naturally, I am in no mood to hear this. Yes, Susan and I put too much on the lead intern but that doesn’t justify her swinging from telling us we were great parents and we must not let Jani go to residential to criticizing us and telling us we are not doing what we should be doing for Jani in the space of a few days.

 

Soon I was so angry that I cancelled the meeting scheduled for this morning, feeling that feelings were so raw that nothing productive could come out of the meeting. Not to mention, I still had no idea what was behind all this animosity.

 

This morning, I finally get a response from the psychology professor. She finally reveals what happened. Apparently, one of our interns went to work with this other child, Jani’s former roommate during this last stay. The grandmother left her alone with the girl, who subsequently went into a psychotic episode and attacked the intern in a house full of knives and sçissors. The intern called the grandmother, who said she couldn’t come home due to work and that the intern should call 911. The intern did so and watched as the girl was taken away. She was so traumatized by this experience that she quit OUR intern program.

 

When I told Susan about this, she told me that she had no idea that this intern was working with this child. It was ANOTHER intern she had given permission for her to work with this girl.

 

Feeling compelled to get all sides of this story that was completely new to me, I talked to the grandmother, who told a slightly different and less histrionic. According to her, she and the intern had struck a deal where she would pay the intern to watch the girl while she went to work. She claimed that the intern assured her she could handle the situation. And she did not say she couldn’t come home because she was at work but because she was 35 miles away and wouldn’t make it back before the police and paramedics arrived.

 

Regardless of which story is correct (and I suspect the truth is somewhere in between) Susan and I had nothing to do with it. We neither encouraged or mandated that the intern assist this grandmother and her mentally ill child. In fact, we knew nothing about it.

 

Showing no interest in getting my side of the story, the professor announced that her students were in danger  and that students were leaving the program increasingly embittered by their experience with us (all news to me) and that she was shutting down the intern program.

 

And she did.

 

My emails asking her to reconsider because she was punishing Jani by taking away her support system were ignored. She never replied. She also has not returned my phone calls.

 

So just like that, the internship program, the thing we held up to the world as an example of how you could provide in home services to families with mental illness, was destroyed. Worse still, the professor seemed to have no concern for Jani’s wellbeing when her interns were abruptly pulled from her life. Her only gesture of mercy was that the interns could continue to work with Jani if they so chose, but without the support of Glendale College and without credit.

 

I feel like Caesar stabbed in the back. “Et tu, Glendale College?” You too, interns?

 

I alternate between rage and profound pain. I want to cry all the time. I am completely shattered. Once again, now all Jani has is us.

 

Without the intern program, Jani’s chances of staying out of residential drop dramatically. Whatever mistakes we made, and I have no doubt we made a lot, the decision of the professor to unilaterally kill the program she helped create is purely and utterly punitive. I am angry and I am hurt, but I will eventually get over this. Jani may not. If anything happens to her, it will be all too easy for me to say that this psychology professor at Glendale College has blood on her hands. In the end, she was no different than all the others who cut and run when it got too hard.

 

I am shattered because the system I had relied on to keep Jani going is now gone. A handful of interns have privately messaged us or phoned us to say that they plan to continue, regardless of the internship being officially over. I am eternally grateful to them. They are all I have left. I am even considering asking back interns that I fired last winter. I have no choice anymore. I have suffered a huge loss. I am so angry and in so much pain that Jani is picking up on it and I must conceal it, although already she has asked me where one of her interns was who was supposed to show up today. She didn’t really react when I had to tell her he had decided not to come, but it broke my heart. I tried to tell her that it wasn’t because of her but because he was angry with me, but no matter how much you hate me it shouldn’t stop you for being there for an innocent child.

 

I have lost all faith in everything and I am struggling to find something to believe in again. I have to. I have to for Jani and Bodhi. I will not let these selfish students and their professor drive Jani into residential.

 

I want them to feel what I feel, but there is no way to do that and it is pointless. The decision is final and too much damage has been done to ever repair it.

 

We still have a few interns who will stay at least long enough to finish my semester at CSUN. The fact that I cannot  go to work without the interns also fell on deaf ears.

 

I don’t know what really happened with that intern and that girl. Maybe the intern got her first real taste of psychosis and it scared her away. In understand. But she can run.

 

Me, and Susan, and this girl’s grandmother, and this girl, and Jani, we can’t.

 

There is no escape for us.

 

I guess I have learned that you can recruit people in this war against mental illness. Our only hope is the ones who were drafted into it:

 

The families.

 

And the children themselves.

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Another Brick in the Wall

This is the last night before Jani comes home from UCLA. I should be in Bodhi’s apartment, lying in bed next to my wife, because I will not get a chance to this again anytime soon if not ever again.

 

 

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…where we came in?

 

“So ya

Thought ya

Might like to go to the show

To feel the warm thrill of confusion and

That space cadet glow”

 

I remember, five months ago, on a warm day in mid-December, when we met the second group of psychology interns from the local community college. They were all volunteers. They had all signed up to work with Jani. There were ten of them then, all with that space cadet glow that comes from being chosen for a special mission. They had watched the Oprah Winfrey Show, which is easier than reading the LA Times I suppose. They had seen us talk about Jani’s potential for violence. Yet none of them seemed the least bit worried. I would have expected some trepidation, some fear. It would only be natural, after all. Everything that they knew of Jani came from the press, which focused on her propensity for sudden and unpredictable violence. They were volunteering to work with a child that suffers from psychosis. I would have expected nervousness, but there was none. Rather, they seemed excited, like they were about to embark upon a school trip.

 

What they didn’t realize, however, is that this is a school trip you never come back from. The bus never brings you home again. Once you are on and the doors close, you are on for good unless you decide to open a window and jump out.

 

Of course, it didn’t help that Jani bounced into the middle of the group and then proceeded to the playground (we were at a park). Other than the fact that she referred to friends nobody else could see and the fact that she could not play alone (she kept asking for me) there was nothing to indicate that Jani was any different. She seemed very much like a child that day, if a bit imaginative and eccentric. A few of the interns made a tentative attempt to connect with her that day, asking her about the stuffed animal she had brought along and playing “hide and seek” with her. It was deceptively simple. All they had to do was play with Jani. What an easy internship.

 

So they got on that metaphorical bus that is our life with Jani. And it wasn’t until they realize that I wasn’t going to stop to let them go that the problems began. Like I said, once you are on there is no getting off. If you are going to get off, you are going to have to jump.

 

“Tell me is something eluding you sunshine?

Is this not what you expected to see?”

 

Only three of those ten interns still remain. Eventually, for on reason or another, I had to kick them off and I couldn’t even slow down to do it. Because I am not driving this bus. Jani is.

Mental illness is not a death sentence. But it is a life sentence with little possibility of parole.

 

When Jani’s violence first appeared, when this journey began, countless people, including medical professionals, told us we had to “take control” of the steering wheel from Jani. And in those early stages, I tried. I tried to take control. But I couldn’t. Jani keeps driving. She has to. She can’t stop or even slow down because if she does 400 the Cat and Wednesday the Rat will catch up with her.

 

We thought hospitals and doctors could stop the bus. But they can’t. They can only slow it down by giving her medications. Even all the Haldol doesn’t stop the endless chase that Jani experiences. All it does it fog the back window so Jani can’t see them as well and so can pay more attention to the road in front of her. But unfortunately, her hallucinations are like the gremlin in that episode of “The Twilight Zone” with a young William Shatner. They are all around Jani’s bus, pulling the spark plugs and loosening the lug nuts that hold the wheels on. They want her to crash.

 

So what has this done to me, three years in? Seven really.

 

“If you wanna find out what’s behind these cold eyes?

You’ll just have to claw your way through the

Disguise”

 

My eyes are definitely colder. I have gotten colder. My entire life revolves around keeping Jani on the road, patching up the damage from the gremlins as best I can, trying to guide Jani so she doesn’t crash.

 

Eventually it became clear that Susan and I alone could not watch the road, looking for potholes and hairpin turns, while also trying to patch the pieces of the bus that are daily ripped away by Jani’s hallucinations. But most wouldn’t even get on the bus with us. Wraparound, the social service provided under contract to the Department of Mental Health, refused to get on. Maryvale, a so-called “residential treatment facility” here in Southern California considered it but ultimately decided not to get on. The only option we had was to send her to out of state residential facilities, which meant that we would have to get off the bus and leave Jani alone. We wouldn’t do that.

 

Even when Jani was in UCLA, the bus just went in circles, but it never stopped. The nursing staff and the school district staff and Jani’s special ed teacher did, to their credit, climb aboard, but they tried to grab the wheel. They tried to bend Jani to their will, and if Jani was a neurotypical child, if all she had was a “behavior” problem, they would have succeeded. But you see Jani is only able to drive herself some of the time. And often you grab the wheel, thinking you are taking it from Jani, only to find that a command hallucination has taken over Jani. She is not in control anymore and so the bus pitches all over the road, tossing you backward and off balance. You get thrown to the floor, which I know Jani feels guilty about, but when you get up all you see is her reflection in the rear view mirror, so you assume it was her who knocked you off your feet. Just like nobody else other than William Shatner could see the gremlin ripping apart the engine of the plane, nobody else can see Jani’s gremlins, ripping her apart. Nobody ever can until it is too late and people are dead, like at Virginia Tech, and suddenly you can see the gremlins.

 

I have been tossed around too many times to count, but I can’t get off. I am her father. This is my job. I have to stay. But for anyone else who sees us, be it doctors, social workers, educators, or even our own interns, all you are seeing is us passing by. And so you make a snap judgment that we are speeding.

 

No shit. But I am not driving this thing. I am just trying to hang on to my daughter, to keep her on the road, because as long she stays on the road, she gets to stay alive for another day.

 

The worst part, in my mind, about being human is that eventually you are bound to disappoint others. Eventually, you will lose the ability to hang on to the wheel and you will scream for somebody else, a friend, a family member, to take the wheel before your sweaty palms let go. And for whatever reason, they can’t get there fast enough. They can’t spot you. Maybe because they are trying to hang on to their own steering wheels. Maybe because this ride has gotten bumpier than they expected. Whatever the reason, they can’t be there when you need them. But when you are the parent of a special needs child, you can never let go. So despite your exhaustion, your fingers tighten on the steering wheel. You get a second wind, but it is a second wind driven by anger.  In times of despair, anger is often the only thing that keeps us going, the desire to spit in the face of God. So you throw the person who you perceived failed you off the bus. You scream at them to get the fuck out. And then ten miles down the road, when the anger is gone and the exhaustion has returned, you regret throwing them off.

 

People fail us everyday and we fail others everyday. Most of the time, it doesn’t matter. The failures are minor. But when you have a mentally ill child who is fighting just to have a life, the failures of others become magnified a thousand times over. They become betrayals.

 

And each betrayal becomes another brick in the wall that you build around yourself and your child or children.

 

When you first start this journey, you are desperate for help and you believe that there has to be help out there. But most of the time, there is no help at all, because we don’t really do a very good job of helping each other in our society. The nuclear family that became the staple of American and European civilization eliminated the extended support network that allowed families to function with somebody mentally ill. And every time you think you have finally found some help, it never turns out to be the help that you need.

 

So eventually you stop asking for help and you start isolating yourself, building the wall around you and your child to protect you from a society you no longer believe in, because they failed you when you most needed them.

 

UCLA was the first time we felt we had found a group of people who would ride the bus with us, wherever Jani might take us. This was born out of the fact that UCLA battled Blue Shield through every hospitalization of 2009. They got on the bus not worrying about whether Blue Shield was going to pay the gas bill. UCLA became Jani’s second home, an acute facility that defied its overlords the insurance company and the hospital administrators to treat Jani over the long term.

 

And then something changed.

 

Jani’s last three hospitalizations, all in 2010, have been “turn and burn” just like how normally chronic mental illness is treated in America’s psychiatric units: bring her in, pop some pills in her mouth, and send her back out again. Everybody knows that the rapid release of the chronically mentally ill is a disaster. It only sets them up to have to come back again, often within days of the original release. Kids always calm down in the hospital, because it is a highly structured environment with constant therapeutic activities. But at the first sign of stabilization, the insurance companies stop paying and the child is released. I wonder if the UCLA fellows seriously expect that this short term stability is going to hold. I wonder if they are jaded enough to place bets. And when your child cannot be stabilized for a decent amount of time, when the “turn and burn” fails, then they bring up out of state residential. UCLA is a minimum security prison. If the child fails to “thrive” on the med cocktail, if the rate of hospital inpatient recidivism is high, then everybody starts pushing you to send your child to the maximum security prisons, the out of state residential facilities.

 

In reality, there is not much difference between how the State of California treats mentally ill children and how they treat repeat criminal offenders. And the inpatient doctors and the social workers and the DMH contracted agencies become the judges pushing for a life sentence. As the parent, you are either the offender (in the beginning), the partner in crime to your child’s behavior, or, later, the victim of your child’s mental illness. Social workers and therapists place their hand on your arm, eyes full of sympathy, and tell you you need a life, too.

 

What kind of life is that without my daughter? What sort of life do they expect me to have without her?

 

Last year, UCLA kept telling us that Susan and I “needed help,” that we “needed support.” Of course they had no suggestions on how to get this, but this was the mantra that we heard over and over again.

 

And then we got it. We got the intern program. The interns did what Wraparound wouldn’t do. They didn’t judge our parenting. They just helped.

 

During this last hospitalization, the UCLA staff and doctors were quite obviously hostile to the interns that came everyday to visit Jani, doing what I had asked them do, keeping their schedule with Jani. I wanted them to come because I wanted to maintain as much of a connection between Jani’s life outside the hospital and her life inside it. I wanted her to know that her life would still continue even inside the hospital.

 

Were they consciously trying to destroy the intern program, to interfere with it, to make it harder for the interns to work with Jani? There is no way to know. Maybe I am just being paranoid. It happens when you have built the wall as high as I have.

 

I texted Jani’s teacher when Jani first went in the hospital. I never got a response. I called the Director of Pupil Services twice and he never returned my calls.

 

Not responding to a text message that one of your students is back in the hospital is just plain rude. I wonder if Jani’s teacher has burned out on her. I can understand this. She spent the past three months continually trying to engage Jani in classwork or activities. I can imagine her frustration every time Jani refused (compounded by the fact that she is the only student at this time). I know what it feels like to invest time and energy in Jani and feel like you are trying to communicate through a wall. The problem with Jani’s teacher and the school district in general is that, by nature because of their training, they are always looking for external factors. And when they can’t find any, they are at a loss, faced with a child they can’t teach. A year ago I would have blamed them for giving up. I don’t anymore. I know how hard it is to take this ride.

 

Although in truth you have to keep trying to teach Jani because for nine days you may get nothing, but on the tenth day she will suddenly open up. Then you feel joy, like you matter, like you are important, only to have that joy crushed when on the eleventh day she retreats again into her own world or starts “acting up” again. And you don’t know how many days you will have to go through until you get another chance.

 

I think that is also what has happened to the UCLA staff. After more than a year and eight hospitalizations, they have seen her make incredible progress, only to feel the bitter disappointment every time she comes back again. And so gradually, their hearts harden, to protect themselves from the endless up and down, from feeling like for every step forward, they take a step back. Humans are built to travel, but Jani can’t really move.

 

But we still had the interns, who became more than we ever expected. They became Jani’s friends. They gave us respite. And so when somebody does so much for you, your expectations increase, setting you on the road to disaster. We started to believe that our interns, at least some of them, would be with Jani and us forever.

 

But nothing lasts forever, does it?

Before Jani went back to UCLA this most recent time, she had become so dependent on the interns that she could not function without them. But the interns cannot stay with us forever. They have lives to get to. They are going to have to get off the bus and already one who I most relied on is asking me to slow down. I can’t, of course. I am not the one driving. Jani is. So this intern is jumping off and slowly, over the next several months, the rest will jump off too.

 

The division chair of this particular community college wants this internship to become a service learning opportunity, open to all students. Instead of interns committing to an entire semester, we will have service learners who rotate in and out every three weeks. First, they can’t learn anything in that time. Second and more importantly, you have to be in Jani’s life a long time in order to have any hope of being able to compete with her hallucinations. The “friends” inside Jani’s head may bite her and scratch her when she doesn’t hit like they command her to, but they also never leave her. They never abandon her. It is very difficult for real people, who have their own lives that don’t revolve around Jani, to compete with that. Jani’s hallucinations make her feel like the center of the universe, because for them she is. She is their entire focus. Only Susan and I can possibly come anywhere near being able to compete with that.

 

So the intern program, at least as it exists for Jani, is probably entering the final stages of its existence. The interns have been invaluable to us and friends to Jani, but they cannot come like clockwork forever. Eventually, I am going to have to let them go and the fear of what will happen to Jani when they leave makes me angry. Because anger is easier to deal with than heartbreak. It is easier to put another brick in the wall to isolate yourself from society than deal with the pain that comes from being let down, whether the other party meant to let you down on or not.

 

I know that I contributed to this decline, barking orders at them like a military drill instructor, not because I intend to be an ass but because I have spent the last two years of my life living moment to moment, dealing with crisis after crisis. I have become such a soldier in the cold war against Jani’s mental illness that I have forgotten how to be an civilian, or even civil. Like a soldier returning from combat, I don’t belong in your world anymore. I can’t relate to it anymore. I have too much time in Jani’s world.

 

Those who have tried to ride the bus with us still only ride once a week. We ride forever.

 

Once again, I am being asked about what we are going to do in the future, only this time it is the interns themselves asking, because they know they can’t stay forever.  I can’t think about the future. The future is too terrifying. I can’t make plans. I am paralyzed by fear. All I can do is hold the line now. I cannot imagine any life other than the one I need now, where everything revolves around keeping Jani on the road. I can’t plan for a destination. All I can do is focus on the road and follow Jani wherever she goes.

 

So, on the eve of Jani coming home on 2mgs a day of Haldol which slows down her ability to carry out the will of 400 the Cat, but also leaves her depressed because her “friends” are asleep, she is about to yet again lose more flesh and blood riders on her bus. Eventually, it will be just me, Susan, and Bodhi again, alone. Nearly two and half years after we started this ride, it feels like we have come back to the same place we started: alone and without help.

 

We are stronger this time, so the prospect of being alone again behind the wall of Jani’s schizophrenia doesn’t scare me.

 

I just don’t think I can let anyone else on the bus anymore. It hurts too much when they have to leave.

 

I hate goodbyes, so I will let you off here.

 

 

Isn’t this…

 

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Minutes to Midnight

When Jani last left UCLA on Wednesday, March 24th, she confidently told the staff she wouldn’t see them again until Christmas. This was the first time Jani had ever projected a date for her return. On the one hand, this was depressing, for it now means that when she leaves UCLA, she knows she will eventually come back. She doesn’t leave with the blind optimism we once had, the second time she left UCLA, after we had gotten the two apartments and beginning our new lives living with schizophrenia, that maybe this might be it. After all, she had just spent four months straight at UCLA and we had responded by completely reworking our lives to accommodate her illness while still keeping her with us. The five hospitalizations since then have completely shattered that optimism. We know now, like Jani, that every time we leave UCLA the clock starts ticking again, ticking down to when she will have to come back. Jani has become the living embodiment of the Doomsday Clock, the symbolic clock face created in 1947 by the Board of Directors of the Bulletin of Atomic Scientists at the University of Chicago. The Clock’s distance in minutes from midnight represents how close the Board feels humanity is to global Armageddon. Ironically enough, the clock is typically moved either forward or backward each year on my birthday, January 14th. Currently, the clock sits at 11:54pm, six minutes to midnight. During its existence, the clock has been as close at 11:58pm and never any earlier than 11:43pm. Sad to think that in sixty-three years we have never gotten any further than seventeen minutes from the end of the world.

 

Just like the Doomsday Clock, Jani, has moved around a lot. Just before her third birthday was, I think, her furthest distance from midnight. Back then, she wasn’t even within the fifteen minutes. She was still in the first quarter hour. Even during the hell of her early months, when she never slept, we never thought we were approaching the end. Last Spring, when massive doses of Thorazine seemed unable to stop her violent behavior was probably her closest to midnight. The day she tried to jump out her window was probably 11:57. When she tried to eat Bodhi, that was 11:58. When we thought we could get her into a local residential facility, the clock moved back to 11:56. When, last April, she didn’t recognize me at all, I drove home that night believing we were at 11:59.

 

Then Susan came up with the two apartment idea, one for Jani and one for Bodhi, and Jani’s clock moved back. When we developed the intern program, it moved back again. When we worked out a limited one hour school day with only Jani, her teacher, and a para-educator, it moved back again. When we found out how effective animals were at keeping Jani distracted from her hallucinations, it moved back again.

 

Since then, it has ticked forward and backwards, but like the real Doomsday Clock, we have never gotten further than a quarter hour away. Honestly, even with all the support that we have surrounded Jani with, we are still always within ten minutes of a global disaster.

 

I don’t know why Jani specifically picked Christmas 2010 as her next return date. Maybe she has learned that winter is always her most difficult time. Whatever her reasons, I got the sense that she really wanted it to be true. She knew she would have to return eventually, but she really wanted to get some distance, to try and hold the clock inside her head at minutes to midnight.

 

She made it fifteen days.

 

Tonight, she is back at UCLA.

 

She didn’t want to go. When I told her, she cried and hit at me a little. When I told her, we were visited a woman we visit once a week, a woman who rescues Great Danes. Her house is beautiful, with a large yard, and it is a menagerie. Besides the three current Great Danes, there is a nine year old cat named Kitty that allows Jani to carry her around like a baby. There is a twenty-seven year old parrot named TC that will only talk to Jani, along with another recently rescued parrot that Jani named “Colors.” There is a skittish chicken and a group of doves. This woman’s home is Jani’s Eden and when she is there she is the calmest I have ever seen her outside the time she was on 300mg of Thorazine. More importantly, though, when she is there she is happiest I have ever seen her, the most content I have ever seen her, more so even than with the animals at the local county shelter (which has a cattery where Jani will play with the cats for hours), Petco, Petsmart in Canyon Country (which always graciously allows her to pat and hold their rats), and the horses that we go to visit for equine therapy.

 

It is Jani’s paradise on Earth, and it was a hell of a place to tell her she was going back to the hospital, but I had no choice. If Jani could live there, perhaps her clock would back up and stay where it should be, where it should be for all children her age, if we use one hour as a metaphor for a human lifetime, in the first fifteen minutes of the hour. Maybe, but I doubt it. Eventually, I am sure, this place, if Jani was there enough, would begin to lose its magical ability to hold her illness at bay. I would like to think not. I would like to think that there is a place where Jani could be free and happy forever, but I have walked with her long enough to know that just as much as we never give up, neither does the schizophrenia. It will always eventually find a way to ruin Jani’s happiness.

 

I had to tell her then, because she was ready to leave and it was as good a time as any to tell her that UCLA had finally accepted her for a direct admit. I had spent the last 48 hours trying to get her in and the head of the child and adolescent psych unit had finally said yes. He would not say yes without speaking to me and it took that long for me to get a hold of him.

 

Every time Jani goes back to UCLA, I always go through the same emotional rollercoaster. After the incident that triggers our feeling that she needs to go back, I am in a panic, scared for her safety. I call UCLA, desperate to get her in, and unlike the early visits, there are more hoops to jump through in order to get her back in. Some of this has to do with the standards of Blue Shield, which I skewered in my blog “American Idiots,” because Blue Shield and insurance companies in general will not pay for acute inpatient care unless the patient is an immediate threat to themselves or others. To them, acute means “tried to kill oneself or others.” They fail to realize that as parents we want Jani back in the hospital to prevent this from actually happening. It is like Blue Shield needs Jani to be 11:59:59 to be willing to pay for her hospitalization, when we feel that a hospitalization at 11:56 would prevent Jani from getting to 11:59 in the first place.

 

But some of it is also that UCLA has spent last year trying to steel us for the challenge that comes with having a child with a serious mental disease. During Jani’s first two hospitalizations, totaling five months, during which time she failed to respond to medications to the level that all of us would like, it became clear that there was only so much they could do. So then their focus shifted to mentally and emotionally preparing us for the battle that we have elected to fight by not placing Jani in residential treatment. So part of the reason we have to jump through hoops is because UCLA knows they, and psychiatry in general, have reached the limits of their effectiveness. They know they can re-arm us from time to time but they can’t fight the war for us. I have to jump through hoops to get Jani back into UCLA now because the UCLA doctor needs to know has Jani really taken a turn for the worse or are we just cracking under the pressure? If it the former, they will take her back and take another crack at trying to stabilize her. If it is the latter, they will gently suggest residential “because we need to think about OUR needs as well as Jani’s.”

 

So, once again, it is similar to where we started, when we had to prove there was something seriously wrong with Jani just to get into a hospital. The only difference is that UCLA, unlike Alhambra or Loma Linda, knows there is something seriously wrong. They know Jani has schizophrenia. But there is only so much they can do about it. Treating schizophrenia in children is always more difficult that treating it in adults, but Jani’s schizophrenia remains the most difficult case they have ever seen, the only one since the advent of Thorazine to be so resistant to neuroleptic medications.

 

Of course, she isn’t. In my online parental support group for parents of mental illness, there are many kids who psychosis proves resistant over and over again to “miracle drugs.”

 

Today, we no longer have to prove that Jani is ill. Everybody who matters knows that and ones who don’t mean nothing to me. But in order to get her back into the hospital we have to “prove” that her illness has gotten significantly worse and that her clock really is getting closer to midnight.

 

But as soon as I get her accepted back in, I always begin to doubt myself. Partly this is because there is, because we no longer go through the ER, a sizable delay between the incident that made us feel she needed to go back and when she actually gets accepted, so that when she finally accepted, we are never in an immediate crisis. It is sort of like getting bitten by a rattlesnake. You know you need immediate anti-venom, but you are deep in a canyon, miles from the nearest hospital. So you tie a tourniquet above the bite and start hiking. An hour later, you finally make it out of the canyon and back to your car. You are still alive, when logic dictates you should be dead by now. You don’t even feel the burning sensation of the venom moving through your muscles anymore. The bite stings a little, but you start to wonder if you have actually beaten the venom. Maybe you don’t need the hospital. Maybe you should just drive home. After all, you feel pretty lucid. So you start to rationalize why you are still standing. Maybe the snake didn’t get its fangs in deep enough to really inject enough venom. Maybe it was a glancing blow. You can almost convince yourself that you would be fine with just a little bedrest and some ice. So you have to force yourself to remember that you were in fact bitten by a rattlesnake. You have to force yourself to consider the possibility that the reason you are no longer in pain is because your nerves are dying from the venom.

 

In the moment that I first call UCLA for a direct admit, I am absolutely convinced she needs to go back. But by the time I finally get her accepted, when the fight to get her in is over, I am never so convinced anymore. I wonder if it was Jani just having a bad day, or several bad days. I wonder if I am overreacting. I wonder if I am just not accepting the fact that to a large extent we just have to live with this.

 

So what happened, you ask?

 

Jani assaulted a plate glass partition with her bare hand. Was she trying to put her fist through the glass or was she just throwing a tantrum? It would be easier to know had there been broken glass and blood, but there was only a few scratches and bruises. But hitting glass over and over again with your fist, seemingly impervious to the pain, simply because your therapist is not yet ready to see you is a bit psychotic? Right? Right?!

 

One of Jani’s interns had brought her to her three times weekly therapy session. I was on my way to meet them, coming from Bodhi’s swim class tryout. They were apparently five minutes early to the appointment. Jani threw a fit, throwing a large toy across the room (thankfully the room was devoid of children). Then she attacked the glass partition between the waiting area and reception. When the intern tried to stop her, Jani attacked the intern. Then she tried to run.

 

But when the therapist finally came out, Jani was suddenly fine again, eager to see the fish the therapist has in her office.

 

The same thing happened with me with her session today, except that I kept my body between Jani and the glass. It came on suddenly and left as suddenly as it came. In fact, after each incident of violence, Jani was happy as a clam and had no memory of the violent outburst.

 

And then there is what she has been doing to Bodhi.

Mostly good things. She is sweeter to him than she has ever been. She hugs him, kisses him, apologizes when she accidentally knocks him over, plays cars with him, and even feeds him. She has become the model big sister. Except that suddenly she kicked him in the face the other day. Before, her violence toward Bodhi had always been triggered by her belief that he had one of her toys, or his crying. But now, there is no trigger at all. She will be playing happily with him, sincerely happy, and suddenly she will strike.  He will cry and Jani will look at him for a moment, confused, as if she is not quite sure what happened. Then she is back. We tell her she can’t hit him, but it is clear we are talking to the wrong person. Whomever actually hit Bodhi took over Jani and then left again, leaving Jani to take the fall for something she doesn’t even remember doing.

 

Finally, yesterday, at her outpatient psychiatrist’s office, Jani was having a difficult time focusing on the questions the psychiatrist was asking her. Her psychiatrist noticed that Jani was focused on a particular point in space. She asked Jani what she was seeing. Jani seemed to quickly snap back to our reality and said, “Nothing.” And for the first time, we all got the sense that she had seen something but was willfully choosing not to tell us. Before, when asked questions about what her hallucinations were doing, Jani would happily share their activities. Now, she seems evasive.

 

Is this the beginning of the paranoia, a common symptom of schizophrenia?

 

For those of you who wonder why I have chosen to interact with Jani’s hallucinations, this is why. It is because I feared this might happen one day. As the head of UCLA’s child and adolescent unit told me today when I shared this with him, with schizophrenics, the world of hallucinations gradually, if not aggressively treated, supplants our world, in effect becoming the reality of the schizophrenic. As the fantasy world comes to dominate the real world, the hallucinations become more real to the victim than reality itself, which makes sense when you think about it. These hallucinations are with Jani constantly. They never leave her. Real people, on the other hand, do. In Jani’s case, as much as the hallucinations make her life difficult, they are also more comfortable for her than the real world. Hence, she doesn’t want to give them up. Nor do they want to go away. They, after all, are in competition with us for Jani’s attention. So it becomes very easy for the schizophrenic to believe what the hallucinations tell her over what the real flesh and blood people in her life tell her. I can see why there are still those who believe schizophrenia is demonic possession. The hallucinations will fight back against anything they perceive as a threat to their survival.

 

And I fear we are becoming such a threat.

 

Can you see now why so many mentally ill individuals distrust doctors and psych medications? Of course they do. They are a threat to the fantasy world, which will do anything, even kill its host, to ensure its survival. Schizophrenia is, in effect, a parasite.

 

So the reason I interacted with Jani’s hallucinations, or at least didn’t react to her interactions with them, was because I didn’t want them to perceive me as a threat. If I am least treating them with a certain level of respect, I hoped that they would continue to do the same for me and allow me access to my daughter.

 

I accepted long ago that I couldn’t entirely win over Jani’s mind, but as long as I had some influence over her heart, I could keep pace with the encroaching hallucinations. But I am beginning to fear that I am losing the war of the heart as well.

 

Jani has made many mentions of 400 the Cat lately, one of the oldest and most malevolent hallucinations. 400 keeps trying to get the other cats to drink anti-freeze. Thankfully, we don’t have any. We, and Jani’s psychiatrist, have to ask the same question over and over again to get an answer, but eventually Jani will reveal that 400 is around her. Eventually she will reveal that 400 doesn’t like Bodhi. She doesn’t like Susan either because “Mommy doesn’t like her.” Jani wants to be with me all the time, and now that I think about it, I am the only one who doesn’t tell 400 to go away when Jani tells me she is here. I take Jani to the pet store and pretend to buy cat food for her, because Jani tells me that if 400 gets this or that, she won’t bite. And it is never things a child would want. Jani does say, “If 400 gets ice cream, she won’t scratch me.” She says “If 400 gets salmon, she won’t scratch me.” And Jani doesn’t eat fish.

 

So I pretend to buy 400 Whiskers cat food or a cat condo, and Jani promptly hands this pretend food or condo to something right next to her. And then she tries to move on, rubbing her hands, excited to see the bunnies or the rats in the pet store. But when I think back, I notice her looking behind her every so often, as if she is realizing that 400 is not satisfied. Then she gets depressed without reason. Then she wants to leave.

 

What is the plan?

 

Haldol.

 

It worked once, but it sent Jani into dystonia. UCLA is hoping that this time, paired with Cogentin and Benadryl, they can give her Haldol without the side-effects (Haldol historically has the most severe side effects in terms of muscle shakes).

 

The Haldol will replace the Thorazine, but not the Clozapine.  Clozapine is a one way ticket. Once you are on, they don’t like to take you off because it is very difficult to restart it. So they will try Haldol and Clozapine together. Which has never been done.

 

We are being forced to use the neutron bomb to keep the clock from getting ever closer to midnight. It is either that or residential, and I cannot and will not send my seven year old daughter to an out of state residential facility. Why don’t we move to the state where such a facility is, you ask?

 

Because she still needs to live with her family.

 

Tonight, when I had to leave her, for the first time she cried. And cried. And cried. I desperately wanted to stay, but it was past visiting hours and Jani’s roommate couldn’t get into her pajamas and go to sleep as long as I was there. So I had to leave. And I could still hear her crying through the doors of the unit as I was escorted out. She wasn’t crying for me, specifically. Maybe she was crying for herself. Either way, it was a rare moment of lucidity, a realization of what she has lost.

 

I miss my daughter.

 

I love my daughter.

 

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What is Your Major Malfunction?/Who is Going to Hold You When You Break?

I don’t know how soldiers deal with the death of a fellow soldier. And I am not talking about the war movie cliché where one second your buddy is next to you and the next his face is a pile of goo. War movies are, in essence, “buddy films,” and so they tend to focus on the relationship between one soldier and another, just as this blog often focuses on the relationship between me and Jani. Jani is, in some ways, “Private Pyle” Full Metal Jacket and I am Matthew Modine’s “Private Joker.” It is interesting that Kubrick’s characters were never called by their given names, but by the psychological states they represented. Each character in Full Metal Jacket deals with the psychological assault of war in a different way, and that different way gives rise to their names within the film.

 

Thanks to films like Full Metal Jacket, there is a conception that basic training in the military is all about breaking you down from a human being and rebuilding you into a killer. This is not true. Kubrick’s film was an intentional gross exaggeration of Marine basic training. The real goal of basic training is not to teach you how to kill but to teach you how to survive. The military is not interested in training its soldiers to be cannon fodder. When Osama Bin Ladin said that the fundamental difference between the West and his version of Islam is that we celebrate life, while they celebrate death, he was correct. American soldiers are not trained to kill and die. They are trained with the goal of ensuring their survival. The goal is to send an American soldier into the combat zone and then retrieve him or her in one piece.

 

This means that survival is drilled into the psyche of the American military recruit, but not only his/her own survival. Soldiers must also ensure the survival of every member of their unit to the best of their ability.

 

This means that if you lose a solider in your squad or platoon, you have failed as a soldier. Even if the death was completely unavoidable, and it often is, the individual soldier takes it as a personal failure, which in turn leads to “survivor’s guilt.”

 

I have never been in the military. When I was in high school, the Army tried very hard to recruit me. I wasn’t really interested because I had a very arrogant and insulting attitude toward the military, believing then that they were a bunch of thugs who got off on killing things. Needless to say, I was very wrong about this. Still, such a view of the military, particularly the Marine Corp, was reinforced six years later when it was revealed, after the Columbine Massacre, that Eric Harris has attempted to enroll in the Marine Corp and been denied because he has taking a prescribed anti-depressant. Contrary to urban legend, he was not aware of his rejection on April 20th, 1999 when he and Dylan Klebold began their killing spree. There are actually no indications that he was serious about joining the Marines and certainly nothing to suggest that had he been accepted he would not have carried out the massacre.  He and Dylan had begun planning the Massacre during the winter of 1997/1998, shortly after they were arrested for breaking into a van to steal electronics, so it is doubtful that he ever really seriously wanted to join the Marines. Even if he did, he was probably “inspired,” for lack of a better word, by events of Iwo Jima and Okinawa, not by the determination and resolve of the Marines but by the fact that those assaults seemed, to a disturbed kid, like a “suicide mission,” ignoring the fact that the Marines don’t willingly send soldiers off to die on suicide missions. No Marine is expendable.

 

As it happens, although I never actually signed enlistment papers, I was rejected from the Army for a similar reason to Eric. I was fresh out of a drug abuse and psychological inpatient stay and once the recruiters found this out, it tempered their interest in me. They told me to “give it a few years.” In other words, my history of narcotic use and psychological problems made me an undesirable recruit.

 

Even then, though, there was something that drew me to the military, and still draws me today: the idea of brotherhood, or, in the broader sense, a common humanity caused by being placed in a common situation. I was drawn to the idea of being surrounded by people whose job it was to look out for me, as it was my job to look out for them. Indeed, this concept of belonging to something bigger than yourself was the primary recruiting tool of the US Military (other than the ubiquitous “money for college”) prior to 9/11. That attitude of one for all and all for one is so much a part of military training that it has entered our cultural collective unconscious and probably contributed to the idea that Eric Harris was a “loner,” and if he had only had that group, that brotherhood who would look out for him, he would not have killed 13 people. Of course, it is entirely untrue. Eric Harris was no “loner.” He had many friends and was very popular. He also had an overwhelming sense of superiority common to sociopaths, seeing others as less than human and not deserving of life. What ever drove him to kill was entirely within his own head. The rest of us had nothing to do with it.

 

I, on the other hand, always wanted that brotherhood. I always wanted a group that I could trust with my life, and in return I would value their lives as much as my own. This desire has, I think, been my primary influence in my relationship with Jani. She was part of my platoon and as such I was obligated to do whatever it took to keep her going. It also caused me to take her loneliness, her struggles to connect to our world and actual flesh and blood friends, deeply personally. For so much of my life I have felt like an outsider, the strange one, the odd duck, that identified with those feelings in Jani. Like Jani, I can be incredibly charming, but I can also turn on a dime and lash out at friends and family. The duality of my own nature helped me accept the duality in Jani’s nature. Lexapro has balanced me so I am not as high-strung as I once was, but I knew what it felt like to lose control and turn on those you love. The only difference is I have a voice of logic inside my head. Jani, on the other hand, has hundreds of voices inside her head and almost none of them are logical. It takes far, far more effort for her to think rationally than it does for me.

 

But I always believed I had value, even in my moments of greatest despair and my moments of monumental failure. I never have believed that I was irredeemable. And so I saw Jani the same way. Despite her flaws, she was not irredeemable. And there have been times when Susan and myself were the only ones who could see that. What the media attention has done for Jani is not showcase her as a freak. Quite the opposite. Actually, it has allowed the world to see Jani beyond her illness. It has shown the world what we always knew, that our daughter was still in there, that there was a sweet child underneath the crushing pressure of the schizophrenia. I never wanted to show Jani as “mentally ill.” I wanted to show her as an incredible child. Because if the world could see the child instead of the illness, maybe they could start to see other children instead of the “behavior.” I wanted you to see Jani, Becca, Brenna, Ailish (and soon Mari & Logan when the Discovery Health special airs in May) as they truly are. You know what my favorite part of the “20/20” episode was? When Jay Schadler is talking to Brenna via Skype because she is in residential in Colorado and she smiles at him. It is a beautiful, child-like smile. Jay and the “20/20” producers managed to show the children inside these illnesses.

 

And you know what that means, don’t you?

 

It means that if they are still in there, we have to go in and get them. We are the parents of the mentally ill. We don’t leave any child behind.

 

When my blog first became public, and some were shocked by the some of the past mistakes I have confessed to, I don’t think those people ever understood why I revealed those things. It wasn’t because I didn’t think anyone would find out. Hell, my blog was public knowledge. I wrote them because I believed, and still believe, that my mistakes, my failures, do not outweigh the good that I have done.

 

For me, the key scene in Full Metal Jacket is when, after the entire platoon is punished for a transgression by Private Pyle, the platoon straps him down and assaults him with soap bars swung inside socks. As Pyle cries out in pain and despair, there is a pivotal moment where Private Joker hesitates, sock in hand, not sure what to do. The platoon is trying to teach Pyle a lesson, that what he does affects them all, but Joker hesitates, not because he is unwilling to inflict pain upon Pyle. He, too, is angry about being punished because of Pyle. He hesitates because he is not sure the soap beating will do any good. Unlike his fellow recruits, he is conflicted over whether Pyle can learn. Eventually, of course, he does hit Pyle with the soap. Mostly, he hits out of frustration because he has invested so much time and energy in Pyle. He has worked with him, doing what the real Marines teach, which is never leaving a man behind. But despite all his efforts, Pyle cannot change his nature. In “impotent rage” (long time readers of my blog will get the reference), he strikes at Pyle. But it is a quick hit, as if he knows it is in vain.

 

Of course, that attack changes Pyle. He becomes a model soldier, but he is irreparably broken, as becomes clear the night in the latrine.

 

To this day, there are still those, including Jani’s last doctor at UCLA, who tell us to hit her with the metaphorical soap in the sock. But I am done with that and have been ever since Jani tried to jump out of her window, which was our night in the latrine so to speak. I don’t give a damn anymore about discipline because discipline is becomes punitive if the person can’t learn. And I don’t want Jani to ever put that metaphorical rifle in her mouth. She has a lot to offer. Part of why I write this is to remind myself of that, to remind myself that a soldier never leaves another soldier behind. Watch below to see the worst example of negative reinforcement that will hopefully remind you how humiliating it is.

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Jani herself is alternating good days and bad days. On the bad days, she is more resistant than she has been in a while. She is back to screaming “No!” or “I don’t want to!” over things she was starting to be able to deal with on her own. And it isn’t a tantrum. She is on the edge and she knows it and she is screaming at us so we don’t push her over. We are almost completely separated as a family again because Jani, at unpredictable times, is unable to deal with Bodhi’s crying, and Bodhi is crying a lot because he is in the middle of the terrible twos and his verbal skills are lacking (he now is speech, occupational, and group therapy, along with preschool twice a week in the morning). He rages like a two year old, unable to have something that he wants, but unable to communicate what it is. Sometimes I think even he doesn’t know. Maybe he is reacting to my absence more, for I spend nearly every moment of every day with Jani, because Jani is often unwilling to go with Susan. This is nothing against Susan. I think Jani just knows she is on the edge and she feels safer with me around because she feels I am better equipped to pull her back. After all, I am her platoon buddy. I get her (although so does Susan). I know Susan feels rejected sometimes, both by Jani and by me. Only in this blog do I have the time to explain to her that I feel like I am trying to keep everyone from going over a cliff. By the way, this Saturday is our ten year wedding anniversary. Susan is the best soldier in this fight I could have asked for. I love her very much and am proud of everything she has done.

 

And not just Jani. Many adults with mental illness have been drawn to me over the past nine months and many of them are in crisis, too. I feel responsible for them. I just set up a private online support group for adults with mental illness, but it feels like handing them a peashooter in the face of an approaching army. It is not enough. The girl who sat behind me in high school psychology class, during the very time the Army was trying to recruit me, is hanging over a cliff and it terrifies me. Last week, her college roommate dropped her three kids, ages 10, 7, and 3, off with my high school friend, then promptly went home and killed herself. She was later found by her husband. My friend desperately needs somebody to be there with her right now, but her damn therapist only has 50 minutes and then it is out the door, regardless of what my friend’s emotional state is.  I want her to go back to inpatient but her insurance won’t cover it. I want her there because I want her safe. I am terrified but I am 1500 miles away.

 

I am so angry that there is nothing between a therapist’s 50 minute session and inpatient hospitalization. How the fuck are the mentally ill suppose to make it through life with those two options? There has to be a third way. There has to be a place where the mentally ill can come and be safe, be with those who will watch them, talk to them, keep them going through a crisis until the crisis passes. Because all crises end, just as long as you don’t end them too early with the barrel of a gun in your mouth.

 

There is another friend, who reached out originally to help Jani, who has given us money to maintain the two apartments. I haven’t heard from her in weeks and the last time I spoke to her she was in crisis.

 

I want to rush off and save all of them, but I have Jani. So I feel like I am on the radio, desperately calling for air support. I cannot save all these people. I am trying, but I am only one person.

 

I am not angry that I was drafted into this war against mental illness in my daughter. I do not curse God. I am grateful for the gift. But I am also compelled to save everyone, and it is breaking me.  If you call me in crisis, I cannot ignore you. I am not going to tell you some bullshit and then send you on your way. I am committed to saving you to the best of my ability.

 

This is the link to the private adult mental illness group I set up. If you are an adult dealing with mental illness, please consider joining. I am in desperate need of psychologists/psychiatrists would be willing to share and marshal resources if somebody is in crisis.

 

Next is the link to the Village Project, which is just a Facebook page right now, but I need to make it a full non-profit organization providing trained interns to assist families with mentally ill kids within a year, because that is when Jani’s intern program runs out. I need someone who can write a grant and get funding to incorporate and file for non-profit status. I need someone who can help me plan this thing. Obviously, it has to serve others than just us and Jani, but the families who need it are spread across the country. I can’t pay you now, but I will. I need an administrator who can set this up. I know people have written to me about this before, offering help, but I can’t keep track. I am doing everything to keep Jani afloat, despite all the interns we have. They are working, but Jani needs them all the time. She can’t function without them anymore.

 

I know many of you will tell me I need to focus on my own family, and you are right. But I can’t.

 

I can’t leave anyone behind.

 

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Coming Down is the Hardest Thing

I never read my blog entries. I don’t even read them through before I post them. I write and I post, so when there are mechanical mistakes or missing words in my blogs, that’s why. Partly this is because I am forced to write them in the middle of the night, when whatever child I happen to be on duty with that night is asleep, and partly it is because my blogs are more like radio transmissions and the battery on my radio is running out. I only have time to say what I need to say before the battery goes dead.

 

I am not a pilot, but I come from a long line of them and aviation has always been an interest of mine. Although it might sound fairly morbid, one of my interests is in listening to cockpit recordings of airline crashes. I can assure you this is not some sort of sick fascination on my part. I don’t enjoy knowing I am listening to the last moments of the flight crew’s lives. I listen for the same reason I listen to war stories: because it is my duty as a survivor. I believe that anyone who is alive has an obligation to carry on the memories of those who are not and to try and live our lives accordingly. It is sort of like the old concept of carrying the flag that dates to the earliest written records of warfare. If the soldier carrying the Colors is killed, another soldier must pick them up, even if it means dropping his own weapon to do so. The Colors, the flag, must never remain on the ground, because if the Colors remain fallen, then it represents a psychological defeat to the army. If, as a soldier, you can’t look around and see your flag flying anymore, then you know you are beaten. This tradition largely passed with the end of army against army in the open field. In modern warfare, most of the time you never see your enemy, or if you do, you don’t realize they are your enemy until they walk up to you smiling and detonate a bomb strapped to their chest.

 

Schizophrenia, or mental illness in general, is a bit like that. It doesn’t fight you in the open field. It is a bomb strapped to the brains of our smiling and loving sons, daughters, brothers, sisters, mothers, and fathers.

 

Like terrorism, it uses the innocent.

 

Back to that in a moment. I listen to the ATC or cockpit voice recordings of airline crashes and marvel at the calmness. I marvel at how pilots and air traffic controllers can convey so much in so little. Neither one can scream over the radio. Neither one can panic.

 

I want to share one with you.

 

It is the communication between New York Departure and US Airways 1549, the A320 that suffered the loss of both engines of take-off from La Guardia and ended up landing in the Hudson River. Captain Sullenberger notifies New York Departure, in a tone of voice he like he is reading a bedtime story to his daughter after a long day, that he has lost thrust in both engines and needs to return to La Guardia. The air traffic controller gives him directions to the closest runway. Sullenberger says “Can’t make it.” The ATC, following protocol, offers him another runway. Sullenberger replies, “Unable.” A few seconds later, he asks about New Jersey. The ATC replies that Teterboro Airport was available and asks Sullenberger if he would like him to contact Teterboro. Sullenberger doesn’t reply. ATC contacts Teterboro, who immediately gives permission to land. Sullenberger replies “Unable,” again, followed soon after by “We’re going down in the Hudson.”

 

ATC then reports that US Airways 1549 has disappeared from radar, but keeps communicating with the plane, offering Newark Airport. The air traffic controller had heard the last transmission, had heard Sullenberger’s terse “Unable” to every suggestion, and knew the plane was likely down, but his training required him to keep offering solutions. Why? Because in an emergency, a pilot’s priority is to fly the plane, not answer the radio. And when you are an air traffic controller, all you can do is keep offering potential solutions and remain calm. Whatever fears that ATC had, he had to keep them buried.

 

Being a parent to a mentally ill child is like being an air traffic controller to a mortally stricken airliner. Jani is the plane trying to stay in the air. People sometimes ask me how I discipline. The simply answer is I don’t. That would be like trying to control from the ground a plane that is crashing. My goal is not to get Jani back to La Guardia. My job is to get Jani down safely and so I will keep offering solutions and if she tells me “unable” in her own way, I will offer another.

 

That, and Jani doesn’t have behavioral problems. One of her interns said to me the other day, “I’ve been watching her for weeks now and she doesn’t really misbehave.” This is the first time I have ever heard somebody really say that. UCLA said it, but in their own way. They said, “It is difficult to tell what is psychosis and what is normal seven year old behavior.” Not really. Jani is the sweetest child when she is not psychotic. She loves animals and babies. She loves us. She wants to help. She wants to feed Bodhi. It is just that even UCLA can’t quite bring themselves to actually come right out and say that Jani, or any other child on their unit, doesn’t misbehave. That is how strong the cultural idea of responsibility for your actions is.

 

One thing about dealing with a loved one who has mental illness is that it actually makes you believe more in the inherent goodness of humans. We are flawed, no doubt, but I believe that we all basically want to do the right thing. We all want to fly. It is just that some of us are piloting planes that are broken.

 

We are not inherently evil. Even serial killers will say that they knew what they were doing was wrong and they wanted to stop, and for awhile, sometimes, they could. But eventually the urge to kill simply became too much.

 

I am not saying that those that murder should not face consequences. We all have to face consequences. Serial killers must face the consequences of their actions. But believing they’re evil is just a way to feel morally superior when it is simply that you were lucky enough to be born without a brain telling you to kill.

 

From the time it leaves the gate at the airport of origin to the time it arrives at the gate at the airport of arrival, a commercial airline flight deck crew talk to multiple air traffic controllers. This is done to keep any one air traffic controller from getting overwhelmed. Instead of handling flights, each controller handles a section of the sky. For example, let’s say a flight is departing New York JFK to Los Angles International. First, the pilots notify JFK “Ground” that they are ready to taxi to the active runway for departure. Once at the runway, the “ground” controller hands the aircraft over to JFK Tower. That controller gives permission to take off. Once the aircraft is clear of the airport, the JFK tower controller hands the aircraft off to New York TRACON, or “terminal radar approach control,” better known as either New York “Departure” or “Arrival” depending on direction. This controller oversees all aircraft entering and leaving New York airspace. This controller will set the aircraft on a heading and initial altitude, then hand the plane over to New York “Area Control Center,” better known to pilots as “New York Center.”  This controller handles flights transiting all airspace from Boston to Washington DC that do not intend to land. After about an hour, the aircraft will be handed off to a controller at “Cleveland Center,” followed by “Indianapolis Center,” “Chicago Center,” “Denver Center,” “Salt Lake City,” before finally being handed off to LA Center somewhere over Nevada. Then it is LA TRACON “LA Approach,” LAX Tower, and LAX ground.

 

Since often a pilot will talk to several controllers each controlling a different segment of airspace in each center, by the time the plane lands at LAX, the pilots will have been handled by at least 25 different controllers.

 

Imagine if people had that. Everywhere you went in life, there was always somebody with you, talking to you, watching you, making sure you were safe. And so that person didn’t get burned out, after an hour or so, somebody else would take over.

 

That is what the college psychology interns do for us. Before them, it was just Susan and me, working 12 hour shifts everyday trying to keep Jani from crashing. UCLA gave us some break, but UCLA is like military airspace. At UCLA, Jani’s altitude and direction are set for her. Any deviation from the flight plan and she is grounded.

 

That can’t happen out in the world. It is too big a space. And part of flying is not having your every move controlled by somebody on the ground (meaning somebody outside of your head). But every pilot needs to know they are not alone and that when they declare an emergency, there will be a calm voice on the other end of the radio ready to offer solutions and who won’t get frustrated when the initial suggestions are rejected because the person is “unable” to comply.

 

Because of the interns, Jani can fly and Susan and I don’t always have to be watching the radar screen, looking for signs that Jani is losing altitude. The interns are our relief, TRACONS that will guide Jani as she flies through our world and keep her from crashing.

 

This is what I want the Village Project to do. I want the Village Project and its members to serve as air traffic controllers for mentally ill children, keeping them flying until they can hand them off to another member.

 

I know because of the media attention that Jani has gotten, it is easy to think she is the most likely to crash, but that isn’t true anymore because there are now so many air traffic controllers in Jani’s life, keeping an eye on her. But as the founding member of the online support network for parents of mentally ill and spectrum kids, I get an emailed copy of every message that is posted to the group. And it is like sitting in front of a radar screen, watching planes going down all across the country. Kids with schizophrenia and bipolar and ever mental illness you have heard of and many you haven’t are going down and their parents or guardians are desperately trying to get them safely back on the ground. Sometimes they vent, but what amazes me is that most of the time, they communicate what is happening just like that New York air traffic controller who handled US Airways 1549. They are calmly trying to deal with an emergency, and as every parent of a mentally ill child knows, each emergency could be the last. You never know if your child will be able to recover and land safely. All you can do is keep talking, keeping your voice even, holding back the fear, because the fear won’t help. You have a job to do and you have to keep doing it even if your child drops off the radar screen or stops answering your transmissions. That New York controller kept offering potential landing sites to US Airways 1549 even after he lost radar contact, because air traffic controllers are trained never to give up. Maybe the radio on the plane might be out. Maybe the IFF that allows the radar to track the plane has malfunctioned. Maybe the pilot is just too busy to respond. But controllers are trained to keep talking, keep trying to communicate, even as they call for emergency rescue, always hoping that the plane is still in the air, until they get confirmation that the plane has crashed.

 

What I hate now is that I read these messages in the support group everyday, I hear the transmissions, and there is nothing I can do except listen. I want to be there, to spot that parent at the radar screen, to help guide that child down. And when I am exhausted, I want somebody else to take over for me. This is why the first and primary goal of the Village Project is to establish a network of interns for every parent of a mentally ill or spectrum child who can help keep these children flying. A network that will be there for these families when their child declares an emergency, because existing social services won’t. They don’t help. They exist to train and to judge. But any parent of a mentally ill or spectrum child already knows more than any social worker ever will. Social workers follow a script. Parents follow the child, just like air traffic controllers have to follow the planes. Air traffic controllers do not try and tell the pilot how to fly the plane. They provide “corridors” (rules) but the pilots, like the kids, already know the rules. What they need help with is navigating the world. And so the primary job of an air traffic controller is to help the pilot go where he or she needs to go, not tell them how to fly.

 

I read about parents who have to deal with psychiatrists who don’t believe that children can have bipolar or schizophrenia, which is a little like refusing to believe we went to the moon. Just because you don’t see it happen doesn’t mean it isn’t happening. Just because you weren’t there to see Neil Armstrong and Buzz Aldrin plant the American flag on the Sea of Tranquility doesn’t mean it didn’t happen.

 

Hospitals, at best, can only try to get the child flying again, and because of insurance pressures will often send children back into the sky with only one engine functioning.

 

And Residentials just take kids out of the sky altogether, not necessarily because they are trying to deny them the ability to fly but because sometimes these kids need a more heavily controlled airspace to operate in.

 

I want the Village Project to be the third way, a way that could potentially allow mentally ill children to stay with their families. I want it to provide eyes and hands to help keep these kids in the air, because they are wonderful children in the moments when their illness lets them go, and they deserve to fly.

 

The Village Project will not serve the same purpose as NAMI, Bring Change2Mind, or the Child & Adolescent Bipolar Foundation, all of which do different things. NAMI is the umbrella whose primary purpose is both education for those who live with mental illness and, more importantly, it is the political arm of this war. Bring Change2Mind’s purpose is to eliminate the stigma, beautifully represented by their shirts that actually have a person’s diagnosis printed on it, as well who they are beyond their illness (father, son, daughter, mother, etc). The Child & Adolescent Bipolar Foundation is still fighting to prove that bipolar disorder does in fact exist in children. They are like Galileo against the Catholic Church, still fighting to show that the earth does in fact revolve around the sun.

 

What the Village Project will do is no less important. It is just a lot more expensive. Because what I want the Village Project to do is to actually provide in home help to families with mentally ill and spectrum kids. I want the Village Project to provide respite to the parents and to provide the children a link to the world.

 

NAMI, Bring Change2Mind, and the Child & Adolescent Bipolar Foundation carry the flag. I want the members of the Village Project to pick it up when it falls.

 

Note: Please consider joining your local NAMIwalks. It is a great way to show your support for the cause. Many of you have written to me to ask “What can I do?” Well, you can walk or support a walker at a NAMIwalks event closest to you. Susan, Bodhi, Jani, myself, and as many of Jani’s interns as we can get (because I doubt Jani will actually walk so some will have to watch her while others walk) will be attempting the local Ventura NAMIwalks. Here is the link if you would be interested in sponsoring me as a walker. Click here to sponsor Susan. I consider myself blessed that so many of you have come to the aid of my family, so from now through May 1st any donation made via the Paypal donation button on the main page will be used to sponsor me and Susan in our NAMIwalk.

 

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