Screenwriter’s Blues (Listening to Los Angeles)

If you are a long time reader of this blog, you have probably noticed I rarely write blogs about my own family anymore. My reasons for that are complicated. The easiest explanation is that this is no longer “Jani’s Journey” (the old website). This is the Jani Foundation, a public charity that primarily provides free social events to “emotionally disturbed” public school children and their families in the Santa Clarita Valley, north of Los Angeles. By definition, a public charity belongs to the public which it serves, so talking about Jani doesn’t seem right when she is only one of about 35 kids we currently serve (budget and manpower limitations). Also, for Susan and I, it was always the same goal: to bring attention to the plight of severely mentally ill children. We hoped that interest in Jani would bring people to that cause. All the media we have done as been as a means to that purpose, never about our own situation, which is why I tend to roll my eyes at emails from people hearing “our” story for the first time and suggesting some “miracle cure.” However well-intentioned they may be, WE are not looking for help for ourselves. We haven’t been for a long time. So I stopped writing about Jani in an effort to separate our story from the larger issue of childhood severe mental illness.

 

Of course, the downside to that is that it leads some people to operate on information years old now and make claims that Jani is not doing any better. Jani has, for lack of a better word, “recovered.” I hate that word because it implies that her schizophrenia is gone. It is not. But it is no longer the defining force in Jani’s life. The defining force in Jani’s life now is impending adolescence. That… or Lorde, the 16 year old New Zealand singer. Or Blink-182. Take your pick. Jani goes to school for pretty much the entire day now (we convinced her to stay longer because the other kids in her ED class were getting upset that she was leaving early). Considering that she spent three years in “home/hospital” where she would go to school only after other kids had left and work one on one with a teacher, this is mind-boggling. She has friends in our apartment complex. She prefers them to her hallucination friends now. She begs me to go to the pool when she sees other kids down there.

 

I got to be honest. I can almost forget that she has schizophrenia. The events of January First seem so far removed now that it is almost like it was another life, just like that time period seemed another life removed from the one before that. She is not who she was before the acute period of heavy psychosis. People ask me sometimes if she can still “do” the intellectual things she did in her early childhood. I don’t know. I know she is smart enough to get by but I am not quizzing her like I did back in the old days. That Michael, who had hopes of Ivy League and the Nobel Prize for his daughter, is gone. Dead. Replaced by this current Michael who is just thrilled to have Jani be alive and happy and getting more and more functional everyday.

 

Her improvement is attributed to finding the right combination of medications, the efforts we made to reduce her stress level, time and getting older, and Jani’s indefatigable spirit.

 

But if I wrote all that, you would think the story is over and the story is never over. Jani still has to live the rest of her live with this disease, and we must ensure the survival and happiness of all kids like her, which is what the Jani Foundation attempts to do.

 

But that isn’t the only reason I don’t write that much about our family anymore. Part of is the simple fact that I don’t necessarily want you, the general public, to know everything anymore. I wasn’t quite sure why that was.

 

Until last night.

 

I have fresh scars. Fresh wounds. For the first time in years. Not from Jani, though. The scratches and bruises that I got from Jani when she was acutely sick have long since healed. And the psychological scars? That is what you read in January First and reason why some readers don’t like me very much. What you read in the book is me ripping apart at the seams as my daughter slipped into something I couldn’t defeat and lashing out at everyone around me. I bared my soul in that book.

 

Since I wrote the blog “Bodhi Went (Bury the Lie),” Bodhi has returned to the hospital two more times. I just didn’t tell you about it. Our closest friends knew (which is why I am very careful about who I add to my private Facebook page-don’t go looking for it. You won’t find it and even if you do, I won’t add you if I don’t know you personally). But I didn’t want to tell the world.

 

It’s not because of the tiny peanut gallery that stalks my every word on the internet and would claim, as they do, that we are trying to extend our “fifteen minutes” with yet another mentally ill child. I could give a rat’s ass about that. They can’t have it both ways anyway. Either Jani’s illness was caused by our parenting and if that is the case she shouldn’t be better and we wouldn’t “need” Bodhi to be sick or we’re not any different from other parents and Jani is better and they have to admit that we are a contributing factor. That sentence doesn’t make any sense. Neither do they. It’s my attempt to rationalize with people who need psychiatric help. Anyway, screw them. It’s not about them and I don’t care what they think. One of these days they will realize that nothing they do affects my life and the life of my family.

 

That was a waste of a paragraph.

 

The point is I am not claiming Bodhi has schizophrenia. I don’t know what the fuck he has because he lacks Jani’s verbal abilities. He probably is autistic. I don’t really care. Diagnosis doesn’t mean anything in modern child psychiatry. It’s the symptoms. You try to treat the symptoms.

 

And Bodhi’s symptoms are not like Jani’s. He doesn’t fly into rages. He throws himself around like somebody is jamming his body with a cattle prod. He is violent, but not like Jani. He is violent like he is literally on fire. The struggle is always to protect his head from the floor and the walls. He gets bruises everyday, self-inflicted. HE, and not Jani, is the reason why the downstairs neighbors complain about the noise in our apartment. He screams like he is on fire. But the fire is in his head. Only sleep, and sometimes, if he can let us, holding him bring him relief. From the moment he wakes up until the moment he finally falls asleep, he is doing constant battle with something inside his head. His ABA behaviorists can’t even work with him anymore. All they can do is try to keep him safe. It doesn’t change at school. Discussions have begun about transferring him from autism special day class to ED, “emotionally disturbed,” the same program Jani is in, only because the staff there is better trained in restraining a child for their own safety.

 

Three times this year Bodhi has gone to the hospital, always for the same issue: self-harm.

 

And he is getting worse.

 

He went back a week ago. Yesterday, Thursday, he was released. He was released so he could go to UCLA’s Autism Research Clinic. He was released at 12:45pm. The appointment at the clinic was at 1pm. Distance from the hospital to the clinic: less than 1000 yards.

 

We arrived at the UCLA Ronald Reagan Medical Center at 12:45. Susan went to pick up Bodhi from inpatient while Jani and I went to the Clinic to sign in for the appointment.

 

At 1:05, I see Susan and Bodhi coming in through the sliding doors, Susan holding Bodhi’s hand and the inpatient social worker holding his bags of belongings. She wishes us well and leaves. Bodhi seems fine, although he does want to go home. We tell him we will go home as soon as our appointment is done at the clinic, which the inpatient doctors wanted.

 

1:06pm: I lead Bodhi inside the clinic waiting room, which is very nice, filled with toys and books. The doctor is not yet ready.

 

1:07pm: Bodhi throws himself on the floor, screaming. I go down with him, cupping my hand under the back of his head to protect it.

 

At that point, the chronology gets a bit fuzzy. Bodhi is going into what I think is another of his usual fits. As soon as the doctor comes, he will calm down. I think he can be distracted. I try to show him the toys. I pick him up.

 

He tries to torpedo out of my arms, like a back flip into a pool like they have in Olympic Diving. I have him. I hear Susan tell me that they (the inpatient staff) had had to give him a PRN of Thorazine that morning.

 

I pull Bodhi’s head back up and scream in pain as he sinks his teeth into my left shoulder. I can’t see it but I know it’s bad. He’s bitten me before in these states but not like this. This feels deep. Susan gently pulls his head back. We go to the floor.

Bodhi is thrashing around in my arms and I am trying to keep his head safe from him hitting it on the floor. I do this by holding him to me but that exposes me again to his bites. I cry out again as this time he bites into my left arm. I know it’s not malicious. I know it is like someone biting down something as a reflex. But it still hurts.

 

The receptionist tells me that the doctor is coming. A few minutes earlier, I was nice and polite, but now, for the first time in years, since the events of January First, I revert to that asshole you read in the book who you didn’t like.

 

“By the time the doctor gets here, he’ll be fucking dead!” I cry out over Bodhi’s screaming, to no one in particular. Do I need to explain why I become an asshole in those moments? My child is in a state where he is unable to stop hurting himself and the only thing between him and him getting seriously hurt is me and I am losing control. I am not enough. I am rendered powerless against whatever is going on with Bodhi, just like I was with Jani, so I lash out. What I really want is to beg for help but I have become so used to people just sitting there watching that I am unable to cry out that I need help to anyone but Susan anymore because I know she will take action.

 

The doctor comes. We know him. He treated Jani long ago. He is a good guy. He tries to calm Bodhi to no avail. I am yelling that Bodhi needs to go back to the unit (inpatient), that he never should have been released. The doctor agrees. They can’t see him in this state. He pages the head of child psychiatry.

 

Susan screams in horror. I look down at Bodhi in arms, realizing that he has stopped thrashing around. He is biting down on his own fingers. Hard. Really hard. His teeth are clenched and his jaw is quivering. I can see the skin around his hands turning red, then purple.

 

We get his hands free from his mouth. He has deep purple indentations on his fingers. He has bitten to the bone. Susan screams again that he is bleeding. From his fingers? No, his mouth. He appears to have bitten his own lip. And his gums are bleeding from the friction against his own fingers.

 

From then on, I am only vaguely aware of what is happening around me as I try to keep Bodhi’s hands from his mouth by holding them (which means my hands are repeatedly bitten) and trying to protect his head. Another doctor joins in. And another. Gradually every doctor in the clinic is there, all trying to protect Bodhi from himself or calling for help. UCLA Health Security arrive. One takes over holding Bodhi’s legs while the other calls for an ambulance.

 

The original doctor writes a 5150 hold for Bodhi to get him back onto the inpatient unit, although we will have to go through the ER. But we can’t get him to the ER. The ER is a 1000 yard walk over concrete. We will never make it without risking Bodhi catapulting his head into that concrete.

One of the doctors calls 911.

 

The clinic is closed and all patients are told to wait outside.

 

UCLA Police arrive and just look in at me, Susan, the doctors, and Security struggling with Bodhi. I hear that paramedics won’t come because “it isn’t a medical emergency.” I scream that it is a medical emergency. I can feel Bodhi’s heart racing. His breathing is fast and shallow. I tell them that if EMTs don’t come soon, it will be a medical emergency.

 

UCLA has their own EMTs but they take forever.

 

At some point, Bodhi begins to wind down. Maybe that thorazine he had hours earlier is working. He says he wants to go to the bathroom. I take him. Security comes with me. He says he has to make a poopy. I help him onto to the toilet. He sits for a few minutes. I start to relax. Then he throws his head back, his head missing the flush bar of the toilet by a hair. Literally. It brushed his head. Had he hit it, he would have had a serious head injury.

 

We get him back into the clinic. He is ramping up again. I have been bitten in several places but I have no time to think about it. Just dull pain. He is back to trying to bite his fingers. He may not be trying to actually bite them off but he is biting with such force.

 

Another doctor brings out a heavy blanket just as the EMTs finally arrive. We wrap him up, him still on top of me, to pin his arms. I go onto the gurney and they strap me down with Bodhi on top of me.

 

He is calming down.

 

We get outside and there are thee ambulances, one UCLA EMT and two LA City Fire. Now they are treating this like a medical emergency and it only took one hour and forty minutes.

 

I know because I ask the EMT what time it is.

 

If Bodhi had been having a medical emergency, they would have been there for him in three minutes. But because this was a psych emergency, it took more than 90.

 

The autism doctor has to come with us because he signed the 5150 hold.

 

It is a five minute drive back to the ER.

 

I send Susan and Jani home. We could be in the ER for hours and Jani can’t do that. I tell Susan I will get a cab home.

Bodhi falls asleep. I check my wounds. They are bad. The nurses want me to check in but I won’t because I would have to leave Bodhi. Bodhi wakes up again late afternoon. He is given thorazine as a preventative measure. It doesn’t work. He eats a little then becomes agitated again. He hits his head on the side of the gurney. I am alone. I call for nurses. Eventually it takes four of us while another calls to see why it is taking so long to get him upstairs to the unit.

 

They can’t transport him. Bodhi is so bad he can not be safely transported upstairs.

 

I have been at this for hours. I need a break but I need to know Bodhi will be safe. The nurses offer to put him in restraints. I refuse. I would rather hold him.

 

Two hours after the thorazine, it finally begins to kick in and he calms down enough for transport to the Unit.

 

He has urinated on himself and needs a bath but I am a little leery about doing that, given what happened the last time I bathed one of my children in a hospital (read the book). He is calming down. I get his bed down on the floor. I am reluctant to leave him to do the admission paperwork with the nurse, but I am spent. I have no choice anymore. I can’t keep him safe and I am physically and emotionally drained.

 

The only thing I remember about the admission was when the nurse asked me what my goal was “for this admission.”

 

“For him to not bite off his fingers,” was my answer.

 

***

 

It is after 9pm when I get back outside the hospital. Dark. I have no way home. I call Susan. She offers to come get me with Jani but I don’t want to disturb Jani’s routine. She is going to bed. She tells me she has emailed the producers of the “Born Schizophrenic” series because they emailed earlier in the day, interested in discussing another special for next year’s “Psych Week” on Discovery Health. She told them what happened and said they should come down. I call them, hoping one of them can give me a ride home.

 

No answer.

 

Which is why “fame” means shit to me.

 

I call my best friend, John, hoping he is not already asleep. He works with me at CSUN. We were TAs together. I hate to drag him out knowing that he taught a full load of courses today but I have no other choice. He doesn’t answer the first time but he has told me that if he doesn’t answer and it is an emergency to keep calling. I call again. He answers. I ask him to come get me. He does so without hesitation, even though it is a hell of a drive for him.

This is not the first time he has come to get me. He came when Jani went to Loma Linda over five years ago. He came the first night Jani ever went into UCLA. I had to leave him out of the book because I was up against a hard word count from Random House and I didn’t have the time to introduce him as a “character” but he was there. On page 290 of the paperback I write “Thank you from the bottom of my heart to my friend John Gides. John came the night Jani went into UCLA and I would not have made it without him.” That’s one of the greatest understatements I have ever made.

 

Thursday night was the third time John came and the third time his presence saved me from breaking to pieces in a Los Angeles night.

 

If you have never been to Los Angeles or have never bothered to look up while you were here, you don’t know what the sky looks like here at night. There are no stars. The marine layer rolls in off the cold Pacific and the sodium lights of the City reflect of the sky, giving it this sickly orange color.  It reminds me of death.  I suppose that is why in that sky I see the desperation that is people of Los Angeles. All the people who came here because of a dream and watched that dream die. It’s all there in the night in this City, the desperation and loneliness of millions of people, sending their hopes and dreams and pain up into the night and it reflecting off the marine layer and back down amongst the freeways and the neighborhoods of Los Angeles.

 

You do not want to be alone under that sky. Being alone under that sky will eventually kill you.  The homeless here, and there are thousands, do not have to deal with cold weather, but they do have to live out there under that dead sky.

 

John saves me by not asking me to talk about what everybody wants me to talk about. We talk about the insignificant stuff. We complain about annoying students we’ve had and what it would be like to teach at a small liberal arts school instead of a giant state university, what I refer to as our Wonder Boys fantasy (read Michael Chabon). For lecturers, Wonder Boys is our fantasy of what we thought being college instructors would be like (Ivy walls, comfy offices, faculty lounges, students who actually know your name and you know theirs).

 

But it was on the ride home on the 405, looking out the window at the Valley streaking past us and that damn Los Angeles night sky, that I realized why I hadn’t told you about Bodhi’s hospitalizations after the first one and why I still don’t want to tell you and why you shouldn’t expect this blog to turn into updates on Bodhi.

 

Because this is my pain. My fucking pain. It’s mine.

 

Left to Our Own Devices (The Optimist)

Antoinette Tuff’s name is very appropriate. While Dekalb County prosecutors fall all over themselves to come up with charges for Michael Brandon Hill, who Tuesday walked into Ronald E. McNair Discovery Learning Academy with an AK-47 and more ammunition than your average military platoon carries (because of course there is no better deterrent for people in a severely psychotic state than a long prison sentence), Tuff, a front office worker at the school, may have helped the cause of treating the severely mentally ill take a giant step forward.

 

For the first time in one of these “tragedies,” there was no tragedy. Everybody got out alive, including Hill himself. That is the first significant part of this. Adam Lanza’s not around for us to ask him questions anymore. For James Holmes and Jared Loughner, it is too hard for society to look beyond the crimes they committed. In Aurora, they still want blood.

 

But no blood was spilled in Decatur. No lives were lost or changed negatively forever. No one took a bullet.

 

For me, this is a seminal moment in mental health history. Perhaps it is fitting that it happened in Georgia, the birthplace of Dr. Martin Luther King and the Civil Rights movement. For me, Ms. Tuff is the spiritual descendent of Rosa Parks. She defied fear and made a difference.

 

What did Tuff do that was so incredible?

 

She treated Hill like a human being. She talked calmly to him. She told him what he needed to hear to stop whatever it was he planned to do with that AK-47.

 

I would strongly encourage DeKalb County Sheriff’s to hire Tuff as a hostage negotiator.

 

Of course, credit must also go to Hill himself, who had enough logic left inside his psychosis to tell Tuff that he knew he should have gone to a hospital instead of coming to the school.

 

One human reached out to another human who was losing his humanity to his illness and she pulled him back. It is too late for DeKalb County prosecutors to be heroes. Tuff did what will not occur to them as they now try to punish Hill, or to the police with long guns who were ready to kill him. Without a weapon and without the loss of life, Tuff brought Hill back from the hell he was in and the deeper level of hell he was going to. It appears he wanted to die at the hands of police. They might have obliged. But Tuff made human contact despite her own fear and changed the course of history.

 

For the first time, there is nothing to distract us from the truth, which is a severely mentally ill man off his medications went into a school with a gun and was not so far gone inside his psychosis that an office worker couldn’t get through to him. We have to face that truth because that is the only truth there is. If Hill had been undergoing intensive outpatient therapy like AOT (mandated medication), he would not have gone to the school that day. But this time there are no dead children or dead anyone to mourn for. There is no killer to shake our fists in rage at. There is only a sick man.

 

I want you to sit with that for a moment.

 

Hill is and was no killer. He was a sick man in incredible pain caused by a disease you can’t see until he stuck a AK-47 in your face. He wanted to die because he wanted to end the pain. But instead of dying or killing, a woman saw the humanity that was still inside him. She saw the man inside the disease

 

And by God the disease, the psychosis, let him go long enough to lay down his weapon and get directions from the police, via Tuff, on how to surrender.

 

What makes this such a seminal moment is that for the first time the public heard from the would-be killer before he could kill. He spoke. We will never know what Adam Lanza said or did not say because everyone who could have heard him speak is dead. Holmes and Loughner said nothing because they were already too far gone. The psychosis had erased their true personality. All we have from Seung-Hui Cho is the rantings of his disease that he recorded hours before he killed 32 people and mailed to NBC News. He, too, was too far gone to show anything left of who he really was. His rants have nothing to do with why he killed and the reveal nothing about who he really was. In fact, they directly contradict who he was by the reports of those who knew him when he was still just sick and not yet a killer.

 

But Hill was not that far gone yet. Maybe because he had lived with his disease (according to his brother, it is bipolar) longer. Maybe it hadn’t been that long since he stopped taking his meds. Whatever the reason, there was enough left of him so that when Tuff talked him, he talked back. And slowly, she got him to reveal who he really was.

 

On the 911 call, Hill can heard saying, “he should have just went to the mental hospital instead of doing this, because he’s not on his medication.” Tuff reports that “He said he don’t care if he dies, he don’t have nothing to live for.”

 

He said nobody loved him.

 

And Tuff replied that she did.

 

Was she lying to save her life? Perhaps. We could be cynical like that. But I don’t think so. She obviously came across as sincere enough that Hill didn’t proceed with his “suicide by cop” plan.

 

She also shared her own personal struggles with Hill, which whether she intended it or not was brilliant because it humanized her to him, not that there is any evidence he planned to kill her or anyone else in the school.

 

Take away the gun and you have two people, two human beings, sharing their pain with each other.

 

And isn’t that what we are supposed to do for each other anyway?

 

When I teach rhetoric to first year college students, I focus on pathos, which is the appeal to emotion. Why? Because I tell them that there is one language we all understand.

 

Pain.

 

Every human on earth has experienced pain. It is pain, not joy, that is the only thing in common that all humans have.

 

Sharing our pain with each other is how we form bonds. It is how we humanize each other. It is the vehicle of our empathy, which is the most powerful of human gifts. Not sympathy. Sympathy is a false expression of something you can’t relate to. Sympathy is empty words. You all know that. Empathy is something you FEEL. Empathy is when you feel another person’s pain because it reminds you of your own.

 

Empathy, my friends, is what makes us human. It is what keeps us from hurting other people or when we do it is what makes us try to make it right. Empathy (along with medication) is the greatest enemy of severe mental illness. Because severe mental illness like the psychotic illness make you think the world is against you. It tries to isolate you. But empathy is the enemy of isolation. You stay isolated if the people around you can feel just a little something of what you feel.

 

You may never know what it is like to hear voices in your head telling you you are worthless and that you should die.

 

But you know what that feels like. Everybody has felt it. Everybody has had that moment of darkness where you can’t see the sun rise again. Everybody knows what it feels like to have moments of irrational anger. Everybody knows what it feels like to lash out at somebody that you really love and everybody knows the guilt afterward when you can’t for the life of you figure out why you hurt that person.

 

You may not know the thoughts of someone who is bipolar, schizo-affective, or schizophrenic but you know the FEELINGS. The only difference is that for you it is a moment. For them it is lifelong. You don’t have a disease that can rob you of your humanity. They do.

 

The Jani Foundation provides free social events to kids in the special education classification of “emotionally disturbed.” They are “emotionally disturbed” because they are all mentally ill in some way, but not all them have a diagnosis. Some of them may not get one until they are Michael Hill’s age.

 

But this is what I do know. Even though the vast majority of them are white and male, just like the general profile of mass shooters, I know in my heart that none of them will ever do something like this. I know you will never hear about a kid who went through the Santa Clarita Valley’s ED programs shooting up a building or killing anyone.

 

Why?

 

Because they will not grow up alone. Because of your financial support that allows to put on these social events, currently for K-6 but next year grades 7-8 and the year after that 9-12, the mentally ill children of Santa Clarita will never feel alone. They will never feel like nobody loves them. Whatever struggles they go through from here, they will have their peers and other families to support them. They will have the community which is getting to know them.

 

This is why we preach socialization over isolation. This is why we oppose residential treatment. This is why we do what we do, which is just taking these kids out to a fun event just for them and their families where no one will look at them funny or judge their actions.

 

Because medicated or not medicated (although we believe in medication, not all parents do), isolation will kill. One way or another, it allows the disease to take over.

 

Socialization pushes back against the disease. Every party, every fun event, every playing with their ED classmates tells the disease “We will not let you win. We will not give up on this child.”

 

We’ve only done two events and already I have seen amazing things. I have seen the diseases retreat. At our last event, at SkyHigh Sports where the floors are trampolines, they gave the Jani Foundation group a dodgeball court before I could realize what was happening. Dodgeball is not good for ED kids. They take it too personally. I’ve seen boys get accidentally hit in the face with a stray ball on the playground of the school and try to kill the child who threw it. I watched them go after the poor general ed child with the bad aim and watched multiple instructional aides have to hold them back. I have listened to the string of foul language directed at the other child, words that should come out of no 10 year old’s mouth.

 

Yet, this last Friday at our event at SkyHigh, they had dodgeball. And before I realized what was happening, a boy, the same boy I described above, got hit in the face by an errant throw. Both his mother and myself rushed to the edge of the court, holding our breath, ready to jump in if he went after his fellow ED student.

But he didn’t. He took off his classes, made sure they were cracked, blinked a few times, and put them back on. Then he picked up the ball that had hit him.

 

“Are you okay,______________?” His mother and I asked simultaneously.

 

He looked over at us. No rage.

 

“Yeah.” He turned back to his classmates. “Guys, watch my glasses, okay?”

 

And he went back to playing with them.

 

This is a boy who at school prefers to walk in circles by himself because he doesn’t want to talk to his classmates. He doesn’t “like” them.

 

And yet he was, actively engaging in appropriate play.

 

We had over 20 kids, all from the ED program.

 

And you never would have known that any of them were anything more than just normal kids.

 

That one moment justified everything that Susan and I have worked to bring about with the Jani Foundation. It proved to me that our program, although small and pretty simple, actually works.

 

Assuming we can keep raising money (Your tax-deductible donations to www.janifoundation.org/donate/ make these events possible).

 

Of course, I am sure there will be bumps in the road. I am sure there will be meltdowns and threats of violence at some point. It is a daily battle against their own minds for these kids.

 

But I firmly believe that as long as they are not left alone to play “Minecraft” in the basement, if you ever hear about any of them on the news, it won’t be doing something awful.

 

It will probably be for inventing the next hot video game.

 

Watch your back, “Minecraft.”

 

And watch your back, mental illness.

 

Because we know how to fight back now.

 

You will not win.

 

These kids, these brilliant, wonderful, funny kids, are ours.

 

 

 

Screw It Up (It’s Okay)

“Did you hear what Dr. Phil said?!”

 

I’ve been getting that a lot lately. At first I was reluctant to respond because I didn’t see the episode in question. Being as my time is very limited, there are very few TV shows I will make time for (thank God for DVR). I don’t even watch the shows we’ve appeared on (we still have yet to see the most recent Discovery Health/TLC special “Born Schizophrenic: Jani at 10). I only make time for “Dr. Who,” “Sons of Anarchy,” “Falling Skies,” and “The Walking Dead.” The last one I highly recommend for parents of severely mentally ill children because it is the only show on television that I guarantee will make you feel better about your life).

 

So I did not see the Dr. Phil episode, where, while attempting to tell a young woman with an obsession that she is not “insane” (her words) because, allegedly, “insane” (which is a legal term, not a psychiatric term) people “suck on rocks and bark at the moon.” As such, my fear in commenting on something I didn’t see with no understanding of the context was that I would help to create the infamous “yellow purple monkey dinosaur.” This is a reference, for those of you who don’t know, to how when one person tells something to one person, who then tells it to another, and that person tells another on ad infinitum, what the final person hears is not even remotely close to what the first person actually said.

 

But, having actually been on the “Dr. Phil” show, I knew people were waiting for a response from me. Am I going to take Dr. Phil to task, having actually met the guy? Am I willing to burn a bridge that probably did more to promote sales of January First than any other media appearance?

 

Well, I hardly think I am “burning a bridge.” How many guests does Dr. Phil have on every year? I would be shocked if he even remembered us. Nor do I expect to go back on his show, regardless of what I say. What reason would there be for the producers to ask us back?

 

The first thing you have to understand about Dr. Phil or any other talk show is the sheer volume they must produce. I am sure the producers would love every show to win a Peabody, but when you have to produce 150+ shows a year, that ain’t gonna happen. A lot of what CNN or Fox News says is crap, too. That is what happens when you have to constantly produce content.

 

This is why, I assume, Dr. Phil can do a show with a Wohlenbergs, who were in the “20/20” with us, and attribute their two eldest daughters’ symptoms to a lack of parenting skills, only to turn around two years later when we were on and make some rather cogent clinical observations (like his explanation to the audience of Jani’s “flight of ideas” being a common attribute of schizophrenia), followed a year later by this show where he seems to imply his guest cannot be mentally ill because she doesn’t “suck on rocks and bark at the moon.” So many shows based in between each of those three distinct episodes that you cannot assume that Dr. Phil actually remembers anything he said on a prior show.

Next, how these shows operate is that the producers have a variety of potential stories and who they book depends on who is available at the time they need to tape. Meeting Dr. Phil was for me like meeting Dr. Drew when I went on his show on HLN. I met him literally five minutes before the cameras started rolling. In Dr. Drew’s case, he had to be reminded who I was and why I was on his show. I hold no ill will for this. He was literally prepping for the show as they were wiring his microphone. Dr. Phil is a little more in depth than that but the total time we spent with him was less than one hour (including hours spent at “The Dr. Phil House” and then the live studio taping). In short, these guys are prepping for the show right before they go on (Dr. Phil tapes numerous shows in a single day). As make-up and mics are going on, they are deciding what they are going to ask you and what angle they are going to take. Intros and outros and read off the teleprompter but the Q&A or discussion has only a rough guideline. You answer a huge questionnaire before the show and maybe one or two (or sometimes none) of those questions make it on the air because the host has to ask what they feel are the most pertinent questions that their audience will be interested in while in their earpiece they are being told how close they are to a commercial break. They want quick and punchy statements (which is why I almost always get cut off-I talk too slowly, forgetting that I sometimes less than 3 minutes before the commercial break). For my critics who believed that I mislead Oprah about the allegations of abuse against me, I didn’t. During the “pre-taping,” the producer, filling in for Oprah, asked me about those accusations and I answered. So I was fully prepared to answer them but obviously Oprah, who, like Dr. Phil, makes the final decisions about what questions to ask, decided to skip that. Apparently, there were other questions either she found more intriguing or she ran out of time.

 

Several times prior to taping “Dr. Phil,” the producer asked us, “What help do you want from Dr. Phil?”  I guess that is how the show operates. People come to Dr. Phil for “help” and he “gets real” with him. He had a hard time with us because there was nothing we wanted in terms of help. Having remembered the Wohlenbergs show, our only request was that he acknowledge that brain based mental disorders are in fact very real. But Dr. Phil likes to preach to people (it’s his thing), hence the bizarre, out-of-left-field advice that we had a “sexless marriage” (we don’t) and that we needed to “take time for ourselves.” I guess that was the best he could manage with two parents who weren’t looking for help. We were looking to educate the audience, his audience, which is quite big: over 3 million per episode. Yes, we were overwhelmed but we were overwhelmed by Jani’s illness in the same way a parent of a child with leukemia would be overwhelmed by it. And we are advocates. This is what we do. To be an advocate, you have to be somewhat functional, which pretty much rules out most of Dr. Phil’s guests.

 

I told you all of that to give you some context about Dr. Phil and other celebrity doctors. Ultimately, they are entertainers. That is their job. So the first thing I have to say is if you are taking life lessons from Dr. Phil or Dr. Oz or any of these other celebrity TV doctors, you really need to get out and experience the real world a bit more. They are not there to “educate” you. They are there to entertain you because you watch Dr. Phil for the same reason you watch the Kardashians or Honey Boo-Boo: deep down, in places you don’t like to admit to, you like watching a train wreck. Part of it is natural human curiosity (why do you slow down to look at a car crash on the freeway?) and part of it is that it makes you feel better about your own life. These shows are a distraction from YOUR pain and YOUR suffering.

 

There are already plenty of advocates writing that what Dr. Phil said was horrible and reinforces stigma. And they would be correct. So I am not going to beat that dead horse again. For me, what is more important than what he said (because I guarantee you he doesn’t even remember saying it-it should not be taken as what he believes or doesn’t believe) is how the audience reacted.

 

They laughed.

 

Apparently, the idea of a person sucking on rocks and barking at the moon is amusing to them. Even though if a person actually was doing this they would be seriously disturbed and in desperate need of psychiatric care.

 

I suppose the image was funny.

 

Or….is it that people laugh when they are uncomfortable?

 

Come on, you remember high school! How many times did you chuckle at an act of bullying? You didn’t laugh because you’re an asshole. You laughed because you didn’t know what else to do. You didn’t know how to respond. You were afraid. So you half-chuckled because every one else was doing it and you didn’t want to stand out from the crowd.

 

Unfortunately, severe mental illness is not sucking on rocks and barking at the moon. If it were, the entire Jani Foundation and my advocacy would be unnecessary. Sucking on rocks and barking at the moon is weird… but it isn’t going to hurt you or kill you.

 

Severe mental illness does. It destroys your brain, everything that you were, are, and ever will be. It makes you cut yourself, smash your head into a wall and not feel any pain, and in general reduces you from a functioning human being to something you step over on the sidewalk and, in reality, fill your prisons.

 

In short, it takes away your control over the one organ in your body that actually gives you any control at all.

 

It takes away you.

 

And it will do it long before you realize it, if ever. You will think you are fine. But you are not. Friends and family will drift away. You will come to fear everything. If you are able to get yourself help, it will probably be anywhere from 18 months to a DECADE before you actually get any treatment.

 

Mental illness kills slowly, so I guess we can wait.

 

So, no, I am not going to take Dr. Phil to task for something he won’t even remember. The bigger issue is not Dr. Phil. It is the audience that laughed at what he said, and, by extension, the millions across the country who laughed at what he said. Not because they were bad people but because they didn’t know what else to do. It was like being back in high school and watching the scrawny kid get bullied all over again.

 

Back in high school, why didn’t you say something?

 

Fear? Not wanting to get involved in a fight that doesn’t concern you?

 

Yeah, that’s what the Germans did from 1933 to 1945.

 

It’s like that famous quote by Edmund Burke that everybody loves and attaches as their email signature but few actually act upon it:

 

The only thing necessary for the triumph of evil is that good men do nothing.

 

It’s okay to be afraid but you can’t let that stop you. Because the lives of mentally ill children and adults depend on you NOT doing nothing.

 

You think I always know what I am doing when it comes to Jani’s schizophrenia? Most of the time I am feeling my way in the dark. I have screwed up time and time again and will continue to, but I have to keep going because she is my daughter.

 

My point is that if you try to help those with severe mental illness, you will f*ck it up. Probably more than once. Human relationships are never perfect.

 

But it is the effort that matters.

For context, article by Pete Earley: http://www.usatoday.com/story/opinion/2013/07/31/pete-earley-and-doctor-phil/2596369/

and Janine Francolini: http://www.huffingtonpost.com/janine-francolini/dear-dr-phil_b_3684665.html?utm_hp_ref=fb&src=sp&comm_ref=false#sb=877486b=facebook

Upcoming Reddit AMA

I plan to do a Reddit AMA “Ask Me Anything” around the time of the paperback release of January First. UPDATE: I will be doing my AMA on Tuesday, August 6th, at 4pm EST/1pm PST. This post (and the video below) constitute my proof that I am who I say I am, which is a requirement to do an AMA.

I am sure I will get some very interesting questions. Here is a link to another reddit done about Jani and our family: http://www.reddit.com/r/TrueReddit/comments/zv1a6/when_janni_schofield_was_not_even_a_month_old_she/

 

Socialization Over Isolation (Jani Foundation Programs)

Due to re-airing of “Born Schizoprhenic: Jani at 10,” I figured this would be a good time to share what the Jani Foundation is doing. I know many of you would like an update on how Jani and the rest of us are doing and I get that. But the Jani Foundation is a 501c3 public charity approved by the IRS on June 8th. Despite our personal issues and Jani’s current status, I still have a responsibility to those the Jani Foundation is trying to help. “The show must go on,” as they say, and the Jani Foundation has a job to do, regardless of what is going on in our personal lives.

 

The primary focus of the Jani Foundation is on aiding children with severe mental illnesses like Jani, specifically providing aid within the community.  Incorporated in the State of California on Bodhi’s birthday, December 17th, 2012, myself as President, Susan as Vice-President, and the rest of the Board of Directors have spent the last six months really focusing on how we could best serve children with severe mental illness with the limited resources and manpower that we currently have.

 

The result of this has been the decision to focus exclusively on working with public school “Severely Emotionally Disturbed” or “SED/ED” programs, starting off in our home town of the Santa Clarita Valley, which includes the City of Santa Clarita (Valencia, Newhall, Saugus, and Canyon Country), plus Castaic and Stevenson Ranch in unincorporated Los Angeles County. The Santa Clarita Valley is located approximately 40 miles northwest of Downtown Los Angeles. There are five elementary districts in the Santa Clarita Valley which are Newhall, Saugus Unified, Sulphur Springs (Canyon Country), and Castaic Unified. All five elementary districts feed into one junior high/high school district, the William S. Hart Unified School District. All six school districts participate in what is known in special education terms as a “SELPA,” which stands for “Special Education Local Plan Area.” Use of a SELPA model allows several districts to pool their special education resources, which each district handling one specific area of special education (save Hart, which handles all special ed for grades 7-12). For example, Saugus Unified handles severe autistic students, meaning all students with that classification, regardless of their home district, get bussed to a Saugus school. Sulphur Springs handles K-6 students with severe physical disabilities. Despite this, all five K-6 districts handle some autistic, mentally challenged, and physically challenged students.

 

The only exception is SED, severely emotionally disturbed. All students with this classification, regardless of home district, are sent to Old Orchard Elementary in the Newhall School District, which houses the SELPA’s  K-6 SED special day classes. Newhall and Newhall alone takes these kids, many of who have been suspended or expelled from their original “home” school. If you have read January First, you know that originally Jani attended Oak Hills Elementary (also in the Newhall School District) as this was the closest to where we live. As recorded in the book, due to Jani’s behavior problems in general ed first grade at Oak Hills, the school wanted to transfer her to the SED program at Old Orchard. At the time, I resisted, feeling that they just wanted to get rid of her and believing, incorrectly, that SED was a dumping ground for kids other schools didn’t want. Since then, I have seen how excellent Old Orchard’s SED program is, how committed the staff are to the students, and how attempting to “mainstream” kids like Jani into a general education program only increases their stress level, setting them up for failure. SED special day classes, if done right, in the model of the Newhall School District, are the best option.

 

So why SED classes? The answer is that this is where children with severe mental illness wind up. Some, like Jani, have an official diagnosis. Others do not (HIPPA laws prevent the District from sharing this information with us). When California terminated funding for AB3632, sole responsibility for the placement of mentally ill kids passed to California school districts. Outside of the home, schools are the next front line for childhood mental illness. Institutions whose purpose is to educate now find themselves having to provide actual treatment, something they were never intended to do. What makes Newhall so unique is that the Director of Pupil Services, Dr. Todd Fine, is a former school psychologist who also practiced outpatient for years. Unlike other directors of student services, Dr. Fine has a commitment to the SED program and his example trickles all the way down to Old Orchard administrators, teachers, and aides. It is harder to make change from the bottom up and than from the top down and we are lucky to have Dr. Fine and his staff collaborating with the Jani Foundation.

 

Since our purpose is to provide services for severely mentally ill children, public school SED classes are the best place to start. These children are in the program because they display aggressive, disruptive, and/or anti-social behavior. Having a daughter with child onset schizophrenia and having met other children with schizophrenia, bipolar, or other mood disorders, we know these “behaviors” are not a choice made by the child but symptoms of their brain based disorders. These kids are ostracized and marginalized for something they cannot control any more than a child can control having Down Syndrome, asthma, a heart condition, or cancer. Unfortunately, we live in a society that attributes all behavior to a “choice.” Such thinking is inherently flawed. First, it does not take into account human learning. In general, humans do not commit anti-social acts because we learn the consequences of these acts. When you defy society’s rules, there are consequences. These consequences start at the micro level, as toddlers inside the home, and progress to the macro level, which is prison or death, the ultimate penalty.

 

Humans, like other animals, learn from prior experience what to do and what not to do.

 

Second, it does not take into consideration that in general, as individuals, humans are basically good. War and other acts of violence come from external social and peer pressures. Don’t believe me? Is the only thing stopping you from killing someone the fact that it is a crime and you will be punished?

 

If the answer is “yes,” I suggest you seek help. Most likely though, the answer is “no.” You do not go and kill not because it is a crime but BECAUSE YOU HAVE NO DESIRE TO KILL. So, yes, I believe that humans are basically good. In general, we want to fit in (which can backfire, leading to support for or engaging in, violence). We want to be accepted.

 

Third, like most animals, it is in our genetic makeup to avoid conflict. In general, as individuals, we do not seek conflict out. This goes back to our ancestors and the “conservation of energy” principle and the desire for survival: Don’t expend energy fighting if you don’t have to and fight only to ensure survival.

 

If you come across a rattlesnake, leave it alone and it will go away. It will only strike if it feels its life is threatened.

 

So if a child engages in repeated anti-social behavior, we must logically conclude that negative reinforcement is not having its intended effect and if so, there must be a biological brain impairment that repeatedly compels the child to engage in behavior he or she know they will be punished for.

 

This does not mean excusing the behavior. But it does mean separating the child from the behavior. There who the child is and what the child does. And then there is the unseen illness and its actions. I know these kids. Other kids in SED, not just Jani. And I have seen who they really are underneath their illness. When the illness is managed and under control, these kids are smart, funny, and kind.

 

But because most of society outside their families and the school may never see that, these kids are at risk. They are at risk for suicide, police intervention, prison, homelessness (once we parents are gone). It is not hyperbole when I say that these kids’ lives are at stake. It is vitally important that we intervene as soon as possible to try and adapt them to society because if we don’t, society will punish them eventually. But this is a two way street. These kids have illnesses for which there are no cure. Society must also adapt to them and the occasional symptoms of their illnesses. In short, mentally ill kids must learn to live within society and society must learn to let them live within.

 

This is one of the reasons why we oppose residential. Yes, we understand that sometimes parents have no other option. But a residential inherently isolates the child from society, thereby defeating the entire purpose which is to help the child learn to function in the greater world.

 

As Susan puts it, we believe in “socialization over isolation.”

 

So this is what the Jani Foundation is working with the Newhall School District to do:

 

The first part of socialization is becoming aware of more than just yourself. In my observations of SED kids, I have found that they rarely interact with “neurotypical” kids. However, with each other they engage. Every year we have a birthday party for Jani (and another for Bodhi-he doesn’t get left out). Once Jani returned to SED placement after three years of only being able to work one on one with a teacher after all the other kids were gone, we of course invited her classmates to her parties. For a year, we got no invitations to other birthday parties. When we did it again in 2012, something happened. A few months later, another boy in Jani’s class had a party. Then another. Then another.

 

Talking to the parents, we discovered a shocking fact. Most of these kids hadn’t had birthday parties since they were very young. Why? Because their behavior would scare away other kids. But starting with Jani’s parties, they realized that finally they could have a birthday party for their child with people who would not judge when their child had an “episode” in the middle of the party. And just like in their classroom, the kids do not judge each other. “Everybody has their own issue,” their wonderful teacher tells them. At a recent birthday party for one of Jani’s classmates, I watched FOUR kids from Jani’s class, including Jani, have meltdowns, never at the same time, in chronological order. When one finished, another began. Each child went to the floor (this seems to be common amongst severely mentally ill kids, possibly as a means of keeping themselves from hurting others). No parent and no other child batted an eye. The rest of Chuck-E-Cheese must have thought we were incompetent parents. No, we just know that these moments pass and the best thing is to give the child space. The children not in meltdown mode would simply step around the one currently on the floor and when he or she was done the others would welcome them back into playing as if nothing ever happened.

 

This gave us the idea for Program #1:  Social events throughout the school year just for SED kids and their families.

 

The Jani Foundation will pay the full cost of attending for these kids and their families at special events just for them. We have already lined up a swimming day at Swim Academy, an event at SkyHigh indoor trampoline, and an event at Scooter’s Jungle, a pretty damn cool indoor play area. We are working on a location to hold a Halloween/Karaoke party (these kids love to perform) and a Holiday party.

 

Originally, we wanted to do one event a month but the district was concerned about our funding stream and recommended three events. There are approximately 30-40 kids in the SED program, ranging from kindergarten to sixth grade, plus parents and any staff that would like to come. The cost for each event, including food, comes out to be approximately $500 (which assumes a 50% participation rate). Five events totals $2500 for the 2013-2014 academic year. This is an area you can help. We are seeking donations (www.janifoundation.org/donate) and sponsorships to ensure we can provide these social opportunities for these children. Your donation is fully tax-deductable to the extent allowed by law and we are more than open to corporate and small business donations. I would be happy to discuss business sponsorships and what the Jani Foundation can offer in terms of advertising (this website alone averages 4-8K hits a day). Although we wouldn’t turn anyone away, we are particularly interested in businesses local to Santa Clarita and businesses that operate franchises or divisions here.

These events need to be free because that is our best chance of getting the parents to bring their SED kids.

 

Program #2:

 

To help foster a sense of belonging and identity, we have asked and been given permission from Old Orchard to ask the incoming 6th graders to design a SDC 5 (5 is Newhall’s classification for SED special day classes) insignia and motto. The 6th graders will have to work together to design and create an insignia and motto they feel best represents them. The Jani Foundation will then pay to have this design printed on t-shirts which we will then give out to ALL SDC 5 students and staff. Assuming roughly ten dollars per shirt and total student/staff population of about 60, that comes out to $600. Again, we would gladly accept donations at www.janifoundation.org as well as sponsorships. For information about sponsoring this or any other Jani Foundation program, please write to me at mschofield@janifoundation.org.

 

Each year, the next group of 6th graders would design a new insignia and motto for another batch of t-shirts. The goal of this project is to encourage teamwork, bonding, and a sense of ownership in their program. It is also a way of acknowledging the 6th graders before they depart to the Hart High School District and it gives the younger students something to look forward to.

 

Program #3:

 

This is by far the most expensive of our programs. We want to establish an after-school program on campus for SED students as these students cannot attend traditional programs due to their potential for aggression. Because we would need liability insurance and to pay a facilities use fee, the District recommended we partner with an existing afterschool program on campus to design a special program just for the SED kids, staffed by SED program aides who are familiar with working with this student population (and whom we would have to pay as independent contractors separate from the school district). Right now we are looking to start one day a week, on Thursday (the district’s minimum day), for one hour. The program would be based on the interests of the students and built to accommodate their needs. For example, Jani tells us that many of her classmates get into trouble because they can’t sit still for long periods of time, a fairly common effect of mental illness. So there would have to be a lot of movement. Likewise, competitive sports are out because competition encourages aggression and we don’t want to do that. The challenge would be developing a program that could cover all grades, K-6. Once again, it is a bonding experience and as we expand in days and hours, we hope that this will allow parents to comfortably go to work without worrying about their kids, allowing them make a living, something that we couldn’t do with Jani because the program I am describing simply doesn’t exist, at least hear.

 

The District is behind this idea but understandably doesn’t want us to start unless we have the funds for an entire year. The last thing we want to do is to start any of these programs and have to disappoint the kids because we ran out of money. I don’t have exact per student costs yet (we are talking to Peak Enrichment, which is already on campus and willing to work with us to develop a program) nor the precise cost of the aides (although we would need to pay them above their district hourly wage to encourage their participation); however, a ballpark estimate is approximately $10,000 to ensure that we securely operate this program for a full academic year.

 

And that’s it. That is what the Jani Foundation will be doing and I need your help. Donations can be made via our paypal account at www.janifoundation.org/donate. We also have a “Donate” button at the top of our Facebook page www.facebook.com/janifoundation. If you would prefer to send a check or money order made out to the Jani Foundation, you can mail it to Jani Foundation, 25330 Silver Aspen Way #226, Valencia, CA 91381. I assure you 100% of your donation will go to our programs. The Jani Foundation has no real overhead and neither myself nor any other officer take a salary from the organization. If you represent a business and are interested in helping, I can be reached at mschofield@janifoundation.org. Our goal is to raise $13,100 before August 12th, the beginning of the new school year in the Newhall District. Please help. The more these children are socialized, the better their odds are survival.

 

Thank you.

 

Michael J. Schofield

President

The Jani Foundation

No Good Next to Diamonds

I guess the problem is we are all locked inside our own heads, isn’t it?

 

That is the reaction I get when I read reader reviews of January First. I don’t read them for validation that I am a great writer. I already know I’m not. So it’s not an ego thing. I don’t read them for sympathy either, because that doesn’t really do anything for anybody.

 

The only thing that bothers me personally is the very, very few who actually believe that I did sexually molest Jani. Actually, “bother” would be an understatement. That is the only thing left that anyone can say about me personally that will cut me to my core and rip me open all over again. And it’s not something that I will ever get over. It’s five years in the past but it is and always will be an open wound. That is a weapon my critics will always be able to use.

 

Statements, while also rare, that Jani and Bodhi should have been taken away from me sting, even though I know it won’t happen. One thing I feel like I failed to convey in the book is what that feels like to know your children could be taken away from you. Sure, I knew that DCFS (CPS) existed but before Jani got sick I thought they always saved kids from abusive parents. I thought they were like Superman and Indiana Jones and Han Solo wrapped into a government agent. I’ve been lucky. The DCFS agents who have been involved in our lives have always been cordial. Never once have I personally felt threatened or bullied by them. No, the fear comes from knowing that even people who don’t know you personally, who have never met you or your children, can drop a dime on you and call DCFS. Out of four DCFS investigations, none was triggered by someone who knew us personally and only one had ever actually met Jani (they don’t reveal the name of who “called on you” but they will say whether the report was generated from a “direct observation”). So the idea that people who have never met you have the power to call an agency that in turn has the power, and quite an easy power at that, to take your children away. Knowing that strangers have that kind of power is frightening. So frightening, in fact, that if I was doing this for any other reason than helping other mentally ill children and their parents get help, I would get the hell off the internet and you would never hear from me again. I don’t give a shit about “fame” and the money I have made is less than two years working full time teaching English composition.

 

And I liked my job. I liked my life before I lost it.

 

That is real “stigma,” by the way, not fear of not getting a job or getting into college. I don’t know if NAMI and President Obama realize that. Even that kind of fear is not what stops families of severely mentally ill children coming forward because, quite honestly, you are trying to save the life of your child. You never think about that stuff until it happens and even then, as I wrote in January First, it is secondary to getting the help your child needs.

 

I read statements like “After reading this, I can’t believe this man’s wife hasn’t divorced him!” That by the way, is a direct quote from a review. Here is the full review:

 

After reading this, I can’t believe this man’s wife hasn’t divorced him. He comes across as a huge jerk with a “special snowflake” child, and the very small portion toward the end of the book where he kind of sort of tries to apologize and/or justify his behavior isn’t enough to make him even remotely likable.

 

I read this wanting – and expecting – to have sympathy for him and his family. I ended up feeling quite the opposite.

 

 

This review makes me feel like I completely failed. I was such a “huge jerk” to this reader that Jani was rendered totally irrelevant. My behavior in the book was so much for her that the main character, Jani, became the background and the narrator, me, a secondary character, became the main focus.

 

I guess I make a hell of a villain. Fiction writers would kill to be able to write a character that produces that strong of an emotional reaction.

 

But it’s the first line that gets me: “After reading this, I can’t believe this man’s wife hasn’t divorced him.” When I first read it, I showed it to Susan.

 

“This woman must not have kids,” was her largely disinterested response, before walking away.

 

Not a ringing endorsement of me as a husband and father, perhaps, but that’s not the point.

 

The point is this: For all I know, people walk past each other everyday thinking this. I sincerely hope not. I sincerely hope how this reader’s statement is not how most people think.

 

Because if it is, our civilization is screwed.

 

People are always commenting to me and Susan, “I don’t know how you did it!” while shaking their heads in amazement. Our answer is always the same: “We did it because we had to. Jani was our child.” I go a step further and say, “You’d do the same thing.”

 

But now I am not so sure.

 

Because what does that reader’s statement really say, beyond the fact that I am apparently so much of an asshole Susan should have divorced me and broken up Jani and Bodhi’s family?

 

That when faced with someone you don’t like, that pisses you off, that drives you up the wall…

 

…you should quit.

 

Give up. Throw in the towel. Run in the other direction.

 

Yes, I have been an asshole and I have been an asshole to Susan more than anyone else on Earth. Susan has even called me an asshole on more than one occasion.

 

But Susan is not a quitter. Susan doesn’t give up. Susan doesn’t put herself, or me, before the children and most of the time, if I take my meds, neither do I.

 

Should Susan have divorced me? Possibly. I’ve given her reasons I didn’t even get a chance to put in the book for length reasons and because the focus was supposed to be on Jani. What’s funny about that reader’s statement is that I have been an even bigger jerk than she could possibly know just from reading the book. Could Susan have raised Jani and Bodhi without me? I’ll leave that for her to answer.

 

I am actually less of a jerk to her now, though.

 

I always knew Susan was unique. After all, she agreed to marry me. Most women wouldn’t put up with me. But it wasn’t until we went through this with Jani, and now with Bodhi, that I understood how unique she is. There is no replacing her. Susan is like a 1971 Dodge Challenger: they just don’t make them like that anymore.

 

It seems the more recent models may be too ready to quit when the going gets tough.

 

In all my blogs, in the book, I never got angry at anyone (other than Susan, unfairly) for failing Jani. I’ve failed Jani at times. I’ve certainly failed Bodhi as many point out.

 

The only thing that made me angry was if I thought you were quitting.

 

You can fail. We all fail. But you can’t quit.

 

You see, I don’t care if you hate me because I don’t need your help, at least not personally. Five years ago? I absolutely needed it. Jani doesn’t need it. I am reasonably confident now that she has enough people in her life who will look out for her after Susan and I are gone. I found this out when expressing my fear to the executive director of Carousel Ranch, where Jani gets her equine therapy, that her scholarship is running out and I don’t know if I will be able to pay next year.

 

“Oh, don’t worry,” she told me. “It’s easy to get a scholarship for Jani. Everybody knows who she is.”

 

Ah.

 

This came as a shock to me because I didn’t think about it. That was never what the TV appearances and the book were about for me. I never did it for Jani or for us.

 

I did it for those who are following. I did it for the severely mentally ill kids out there, that you think are just “brats” or a “bad kid” and their parents, who you think are “terrible parents.” I did it to alter your perception of them because they still need your help. They don’t have the benefit of the LA Times, or Oprah Winfrey, or a New York Times Bestselling book. They are not on your TV screen or on your Kindle Fire or on the pages in your lap. They are next door, down the street, in your kids’ schools. They are all around you.

 

So if being inside my head screwed up your chance of recognizing and sympathizing and, most importantly, HELPING them, then I apologize. I failed and everything I did was for nothing. All I did was set up Jani and Bodhi for life. I did nothing for kids in your personal world.

 

Unfortunately for those children, those who hated the book because they hated me most likely will never read this blog. I had one shot to change hearts and minds and I guess I blew it.

 

Oh, well. Don’t worry.

 

Susan and I won’t quit.

 

No Chariots of Fire

Humans are inherently rational.

 

Yes, I realize that sounds like an irrational statement.

 

But think about it. Our ancestors didn’t just look up at the big ball of fire crossing the sky and go, “Huh. Oh, well,” and then go on with their day.

 

No, they had an innate need to explain what they were seeing. Oh sure, their explanation was that the sun was carried across the sky by a God on a chariot, but it was still an explanation.

 

Other animals certainly observe their environment. Our dogs are watching me right now. But that is reactive.

 

Humans ask “Why?”

 

And this is a double-edged sword. It drives our quest for knowledge. We know what we know because of this.

 

But that desire to explain is so powerful that it creates the tendency to attribute causes to events that are not in fact true.

 

And so it is with psychosis and abuse.

 

There are still some people who believe schizophrenia is caused by childhood trauma. I understand this. It is an easy explanation.

 

And it gives us someone to hate. In rhetoric, we call this “humanizing the issue.” It is easier for people to care about people than about issues, which can be more abstract. I ask you for money for a cause and you may say no. But I put a child in front of you who needs help for that very issue and it becomes almost impossible to say no.

 

By the way, many charities exploit that reaction in you. They show you pictures of suffering children and you get on the phone with your credit card. You want to help. Unfortunately, they don’t tell you that only 10 cents of your donation will ever reach its intended target.  They prey upon your desire to save a child. That makes them scum and you a good human being.

 

Schizophrenia, of course, is not a person. It is a “thing,” a thing that we have only the barest understanding of. But a parent is a human being and therefore easier to direct your anger, the manifestation of your feeling of powerlessness.

 

Hence part of the reason why the concept of psychosis being caused by abuse remains alive in fringe psychology.

 

Those that cling to this belief, known as the “trauma model,” point to studies that show a correlation between abuse and psychotic illnesses. A correlation simply means that two things appear together in a statistical significant way. It does not mean one is caused by the other.

 

First, in those studies, have you ever looked at the average age of participants? They’re not young kids. They are people whose onset of illness occurred before the advent of modern Child Protective Services in the 1970s. Therefore, they ignore the cultural shift that occurred in America in the 1980s and 90s as we became a more child-centric culture.

 

Do you remember what it was like to be a kid in the Seventies? Kids were an afterthought. Our society flipped to a near paranoia over child safety as the Baby Boomers had kids in the 80s, leading to mass hysterical accusations of child abuse rivaling the Salem Witch Trials.

 

Studies that show a correlation between abuse and psychosis involve subjects born in the 1940s, 1950s, and 1960s. Are there studies looking for a correlation between abuse in psychosis and children born after the 1980s? No.

 

American culture has changed. For thirty years we have lived in a child centric culture… except perhaps for SMI kids.

 

So we no longer live in a culture that turns a blind eye to abuse. Spank your kid at risk of losing your child.

 

“Mandated reporters” are everywhere. Doctors, teachers, therapists.

 

I am not going to say that abuse doesn’t happen anymore but I imagine it has to be pretty damn hard unless the child is totally isolated from society. Somebody is going to ask questions. Someone is going to report.

 

Then there is the issue of how do we define “abuse?”

 

CPS defines it as the “Big Three:” sexual, physical, and neglect.

 

Emotional abuse, because the major difficulty in defining it, is not counted. Emotional abuse is subjective, hence the reason why it is not criminally prosecuted. And by the way, I am not talking about PTSD, which is a psychiatric diagnosis triggered by extended and intense periods of existing in a “fight or flight” state.

 

Yet, 9 times out of 10 it is the amorphous “emotional trauma” that advocates of the trauma model point to.

 

In terms of sexual, physical abuse, and neglect, there is no higher rate amongst severely mentally ill children than the general population….

 

…as long as they stay with their parents. In residentials and foster homes, the numbers are exponentially higher than the general population. I don’t say to demonize foster parents. Most are not abusive and are fantastic parents. That is just the stats. In Texas, the rate of abuse amongst those in foster care or residential is a whopping 4000% higher than the general population.

 

I am not saying that the trauma model needs to be abandoned to spare the poor parents. Parents of SMI kids go through way more difficult things. What the peanut gallery says means nothing.

 

No, the concept that psychosis comes from abuse is dangerous because it is a simple explanation that prevents us from looking for the real cause. It takes us away from biology and provides a simple answer that if the child was removed from the perceived abuse, he/she would recover. This prevents us from pushing for research and medical treatments. In other words, the trauma model negates the need for research. That is its biggest risk and why it must be abandoned.

 

Thankfully, some of our ancestors didn’t accept that the sun was pulled across the sky by a chariot. Because of them, we now know the sun appears to move because we are turning on our axis.

 

Relativity is a bitch.

 

If we keep defaulting to abuse as the cause of psychosis, we lose the perspective of the greater environment.

 

Walking on the Moon (Books for Better Living)

Books For Better Living asked me to write a short piece for Father’s Day. The day itself is nothing special (not exactly a day off for me) so I went back to what are two greatest highs I have ever felt. This piece is about acknowledging that high and realizing, sadly, that once it is gone it never comes again. Thanks to Susan and Sting for the title.

http://www.booksforbetterliving.com/2013/06/fatherhood-like-walking-on-the-moon/

 

Stuck in the Middle with You (Hearts & Minds)

“Clowns to the left of me, jokers to the right, here I am stuck in the middle with you…”

 

-Stealers Wheel, “Stuck in the Middle with You,” 1972.

 

 

On the Jani Foundation Facebook page I put up a post from my friend Karen, whose daughter Alysha also has child onset schizophrenia, not that that really matters.

 

“One of the most disturbing things I have ever seen today. A young boy 10-12 years old coming out of the psychiatric area of the Denver Children’s hospital with a large leather strap around his waist. Attached to that strap were his HANDCUFFED wrists. He was being lead by an armed police officer to a waiting caged police car. Breaks my heart that this CHILD was being lead away from a psychiatric facility to most likely a juvenile criminal facility. Obviously this CHILD must have done something very serious, most likely with mental health issues, and being taken away from psychiatric help.”

 

Interesting that she wrote “child” twice in all caps.  Probably trying to appeal to hearts and minds with that. We live in a society so ready to throw down the hammer of what we now consider “justice” that it was necessary to keep reinforcing that we are talking about a child here, in the hope that while you might dismiss an adult, there is still some shred of humanity left in you that believes a child can be innocent.

 

I once saw a similar event outside the Santa Clarita Child & Family Center. The LA County Sheriff’s Deputies pull up and a therapist, clearly distraught, runs up to them. I was too far away to hear every word of the conversation between the therapist and the deputies but I got the gist. A “client” had become violent in her office. I think he was trashing the place. What I did clearly overhear was the deputies asking how old the CHILD was (and yes, they used the word “child”). “He’s twelve,” came the answer.

 

I posted a shortened version of this response to Karen’s post and thought nothing more about it. To me, it was just another example the increasing criminalization of the mentally ill. We’re getting down to kids now. I don’t blame the cops. I’ve had enough interaction with the LA County Sheriff’s Department to know these men and women don’t handcuff young boys because they get off on it. They do it because they don’t know what else to do. Seriously, what do you do with a mentally ill young minor? You can’t take them to jail (at least not yet-give it another year or two until they can survive a holding cell). You can’t take them back to their parents, primarily because their parents brought them to the facility for help in the first place.

 

In North LA County, kids get taken the Psychiatric ER at UCLA Olive View Medical Center in Sylmar. It doesn’t look anything like any ER you’ve ever been in. The kids are placed into a series of large rooms with multiple other kids. In essence, the place looks like a drunk tank in a county jail. From there, the overworked attending (and there is just one doctor) desperately tries to find a bed in a real psychiatric hospital. Olive View is not for treatment. It is for holding. You got one room for men, one room for women, one room for male children and one room for female children. Holding tanks. If the attending can find a child psych hospital with an open bed, the child will be transferred. If they can’t, they will be held there until their 72 hour hold expires and then released.

 

The only reason Jani didn’t end up there was because she was a six year old girl at the time the cops came for her. That and a committed deputy who refused to simply pass the buck and force me take her home.

 

Anyway, tonight I get Jani down to bed and come back to see this comment, posted in response:

 

“It is so bad that our children have MI , but that isnt a open book for ur kids to break the law. We as parents have to teach our kids right from wrong. I hope this never happens to my daughter, but if she breaks the law then she has to do the time. MI doesnt give them the right to do as they please.”

 

Now, several hours after I first read this, I notice the “ur kids,” meaning that hopefully, if God exists, this woman does not have mentally ill children. The “our children” threw me at first because I couldn’t understand how any parent of a seriously mentally ill child could believe this.”

 

Anyway, my second reaction, after “May God have mercy on this woman’s children should they ever cross the law” was…

 

Really? Really??!!!!!

 

Is there actually someone left who is stupid enough to believe that, throughout the course of human history, there has EVER been a parent who didn’t teach their children the difference between right and wrong? Really? Really?

 

If so, they would be a freak of nature. I have never seen a parent not correct a child’s bad behavior. I have never seen a parent not teach a child what is right and what is wrong.

 

And I never will.

 

Because they don’t exist.

 

Teaching the difference between right and wrong is so much a part of parenting you don’t even freaking think about it. In fact, that might be the ONLY thing about parenting that you don’t have to learn to do. You HAVE to teach your kids the difference between right and wrong just so they can live in your home. You do it everyday. You’ve probably done it at least once today without even thinking about it. You teach your children right and wrong so they can function within the ever increasing environments they will be exposed to. Let’s take hitting. You teach your toddler not to hit. Why? Because you don’t want them inflicting pain on other children. You want them to be liked by other children. You want them to have friends. As they get older, you don’t want them to get their ass kicked or to inflict serious damage on another human being. You don’t want them suspended or expelled from school.

 

And, eventually, you don’t want them to go to jail. Prison. Death Row.

 

You don’t want to be left with nothing but photographs.

 

Instinctively, we raise our children to survive and function. We raise them with the hope that they will be comfortable and happy, perhaps with a family of their own, when you go to meet your Maker.

 

You see, I know what you think. You all think Jani is “better” now, and she is, in some ways.  She has come a long way, longer than you could possibly know. You watch the TV specials; you watch our Jani Foundation Youtube videos and you see a bubbly and happy little girl. Because she was introduced to you at such a young age, she remains frozen for you as you first saw her.

 

You commend Susan and I for our commitment to her yet Jani is where she is today because of her own hard work and, to be brutally honest, pure dumb luck.

 

You heard me. Pure dumb luck.

 

In Jani’s case, we found a cocktail of medications that has allowed her to slowly reintegrate into society.

 

We got lucky.

 

For three years, Jani could not go to school. She would go for one to two hours AFTER the school day had ended, and work one on one with a teacher and an aide.

 

Why? Because she didn’t want to be around other kids. She couldn’t help hitting them.

 

Her words.

 

So either she understands the difference between wrong and right or she just doesn’t like hitting people.

 

She is now in her second year back in a classroom. A SED (severely emotionally disturbed) classroom but a classroom nonetheless.

 

With other kids.

 

What I don’t share with you, what few people outside of Jani’s immediate circle know, is that she does hit her classmates. Not every day. Some days are better than others. Some days she has a great day. And some days she overturns her desk, throws chairs, crumples and destroys the work of her classmates (including their STAR testing sheets), and hits them.

 

By the way, Susan and I waive the STAR testing. Remember my focus early on in January First on Jani’s genius? My belief that all she needed was a more challenging intellectual environment? Screw that now. Now I couldn’t give a damn about academics or whether she ever goes to college. She goes to school for one reason and one reason only: to learn to function in the microcosm of society that school is.

 

And every time I read in her day note that she hit a classmate, I go into a lecture driven by fear.

 

“Jani, you can’t hit people.”

 

“I hate boys.”

 

“What does that mean? What does it feel like to hate?” (I am trying to get her to recognize emotions). “Hate is a strong emotion, Jani. Hate is reserved for those who really hurt us. Do the boys hurt you?

 

Jani shakes her head. “They swear at the teacher sometimes.”

 

Jani can punch and kick but would never utter a curse word if her life depended on it. So much for learning from what one sees.

 

“Do they swear at you?’

 

Jani shakes her head.

 

“Are they mean to you?”

 

Jani shakes her head, even though I already know this. Jani is the only girl in the class, surrounded by ten, eleven, and twelve year old boys, which means that they are caught between being annoyed by her and strange feelings they can’t quite articulate yet. When she screams, “I hate boys!” in the middle of class, they just roll their eyes and say, “We know, Jani. You hate boys.” Some of them still want her to sit next to them. They give her small trinkets. They make things for her in class.

 

In other words, they are becoming men and learning what we all learn…. For a woman we like, we’ll pretty much put up with anything.

 

By the way, these boys have their own issues. They are sometimes violent. The police have been called on a few. Yet at their core, despite their respective illnesses, they are still navigating the minefield that is puberty.

 

Back to my lecture to Jani:

 

“Why did you hit _____________? Did he do something to you?”

 

Jani shakes her head. “I just hate boys.”

 

I sigh. “Jani, you’re ten right now. Right now it is just hitting boys. But in a few more years, hitting boys becomes a crime. It’s called ‘assault and battery.’ You could go to jail.

 

“I don’t care,” Jani announces. “ I still hate boys.”

 

Because her schizophrenia, when acute, robbed three years of development, that probably sounds to you a lot like something a little kid would say. Little kids have no concept of jail, of the law, of consequences they have never experienced.

 

The problem is she is not a little girl anymore. She is on the verge of adolescence. What will happen when she hits a boy at sixteen? Either she will get attacked herself or suspended or expelled or arrested.

 

The boys that Jani claims to hate so much have even less time.

 

Every single parent of a mentally ill teenage boy I have ever met has dealt with the cops. Boys, unfortunately, get bigger and stronger. They achieve “lethal” capabilities before girls do. Combine the mental illness with testosterone flowing through their bodies and you can see the writing on the wall. It is only a matter of time. 13? 14? Whenever they are big enough and strong enough that only the cops can take them down, you have reached the end of the road. Maybe their mental illness might be a mitigating factor. Maybe not. Either way, at 18, the criminal justice system ignores all juvenile medical history.

 

And the boys who draw pictures for Jani today could very easily wind up rotting away in Chino for the rest of their lives.

 

My point is this:

 

I have yet to meet a schizophrenic, bipolar, or otherwise severely mentally ill child or teenager that did not know the difference between right and wrong. They act out not because they don’t know any better or because they are bad kids. Quite the opposite. They are sweet kids. Just like your kids. They like Pokemon and animals, planes and Legos. They play Super Mario Bros. and The Legend of Zelda, not violent video games (because their parents don’t allow it and to be honest they don’t show much interest in them).

 

No, they erupt, they break your laws and maybe your face because something deep within their brain compels them to do it. And after the psychosis or rage is gone, they fight back tears and wish they were dead.

 

Ever heard a ten year old tell you he wishes he was dead because then he wouldn’t do bad things anymore?

 

I have. It rips me up every time and I commit myself yet again to doing everything I can to save them. Because like Jani, I can see who they really are when their illness lets go.

 

In truth, I see more humanity in them than I do in some of you. They fight every single day against forces that seek to take control of them.

 

And you just sit and judge.

 

I’m not a very good advocate because I am not very good at “hearts and minds.” At least, not your hearts and minds. To me, you are the clowns to the left of me and the jokers to the right.

 

And I’m stuck in the middle with these kids. But that’s okay because that’s where I want to be.

 

Because I can see their hearts and minds.

 

PS: For a better example of how to reach out to your hearts and minds, read this by my friend Janine

Stubborn Love (Humanity)

I am struggling right now. I still have my own personal problems and the problems of my family, but that is not what I am struggling with, although they do have some relation. No, I am struggling with being an advocate for mentally ill children of American parents. And I am struggling with being an American.

 

I wasn’t born an American. I was born on Wednesday, January 14th, 1976, in Sydney, Australia, to two Australian parents. When my father first moved us to the United States in 1981, I received my “green card,” along with my parents, allowing me to reside permanently in the United States.

 

Ironically, the first US city I ever lived in was Boston, specifically the suburb of Sherbourne. I went to kindergarten and first grade there.

 

In 1983, we moved back to Sydney for two years before returning to the United States, this time to Tulsa, Oklahoma (one of three US cities I claim as my “hometown,” the others being Minneapolis, where I graduated from high school, and Los Angeles, where I have lived since 1995, where I met Susan, where my children were born). My green card remained active and I remained an Australian citizen.

 

In 1998, at the behest of my future wife, Susan, I began the process of becoming a US citizen, as did my father. America was my home. I’d spent more of my life here than in Australia. I could not foresee ever returning to Australia to live.

 

In 1999, I became a naturalized US citizen. At the time, Australia did not allow dual citizenship with the United States, so I revoked my Australian citizenship, becoming a full American.

 

And I am an American. I have lived here for thirty of my thirty-seven years. I have an American accent. I have an American wife. My children are American. I am an American. I swore allegiance to the Constitution of the United States of America. And I did so happily because I believed and still believe that the US Constitution and its Amendments, particularly the first Ten Amendments, the Bill of Rights, is the greatest document ever written by human beings.

 

I believe in the Founding Fathers of our nation. They were not perfect (the biggest black mark being that many of them were slave owners) but they were statesmen. They put country above personal interests. Men like George Washington. John Adams. Thomas Jefferson. And James Madison (the author of the Bill of Rights).

 

They created a document that has survived nearly 224 years, making it the oldest surviving charter since British Nobles forced King John to sign the Magna Charta in 1215, stating that the will of the Monarch cannot be arbitrary. The Magna Charta established basic English Common Law, which remains the basis of our legal system to this day. The Founding Fathers rejected Britain’s rule, but they did not reject British Common Law. The Bill of Rights is largely based on same laws established by the Magna Charta, particularly the 5th and 6th Amendments.

I believe in it because it is not subject to the emotion. It is law. It is what elevates us beyond the baser instincts of our human nature and, as Lincoln said, “appeal[s] to the better angels of our nature.”

 

And I believe in the American people. I believe in their inherent goodness. I have to. I have to trust you, not only with the lives of my mentally ill children, but with the lives of other autistic and mentally ill children and adults. Even when you fail to look out for them, for they are your fellow Americans as well, I have to believe that one day you will, because over time you have. Over time, you have always, in the end, done what is right. In the end, you have appealed to the better angels of your nature.

 

And I am proud to be one of you.

 

But every so often, you must be reminded of the better angels of your nature. Now is one of those times.

 

One week ago, two bombs went off at the finish line of the Boston Marathon. Three people are dead, including an eight year old boy. The eight year old boy has been described as “active,” which makes me wonder just because “active” is a euphemism in our world for a child with ADHD or other bio-chemical issues that make it difficult for them to be calm relative to other children. But that is beside the point. The point is he is dead.

 

More than 170 humans were injured, dozens severely. A week later, 55 remain hospitalized in critical condition. According to CNN, at least 12 people have endured amputations of limbs, some enduring multiple amputations.

 

The suspects are two brothers, Tamerlan Tsarnaev, who apparently died when his younger brother, Dzhokhar Tsarnaev, 19, ran him over with a stolen car and dragged his body down a street in Watertown. Dzokhar was found and taken into custody. He is currently being treated for a serious gunshot wound to the neck, although it unclear if this was caused by the police or by a failed attempt to take his own life.

 

I do not fault the various police agencies and the FBI in the Boston area. If Dzhokhar was shooting at them, they have the right and the duty to defend themselves and civilians in the area. They did their job and I commend them for that.

 

My struggle began on Friday afternoon, during the standoff between a cornered Dzhokhar Tsarnaev and police. I was on Facebook and I was watching the comments come up on my “history” in real time.

 

And they made me sick to my stomach.

 

People, friends, other parents with mentally ill or autistic children, were literally almost salivating at what then appeared to be the impending death of Dzhokhar. They were like the crowds at the Roman Coliseum, roaring for blood.

 

They had bloodlust. And somehow they thought such emotion was justified.

 

I give thanks to that the police were there and that Dzhokar is under protection because it seems we Americans are getting awfully close to a lynch-mob mentality. Wild-West justice. Don’t wait for the trial. Don’t wait for the presentation of evidence. Just kill him.

 

I have reached a crossroads, an existential crisis. Since Jani’s story became public, I have dedicated my life to saving the lives of the mentally ill, of protecting them from a society that does not yet grasp that violence can be a symptom of severe mental illness. I have dedicated my life to ensuring that no parent will lose their child the way Ron Thomas lost his son Kelly Thomas, beaten and tasered to death by police. In short, I have dedicated my life to preservation of life, even when you don’t want that life preserved. That is why I have spoken out publicly to preserve the life of Jared Loughner and James Holmes. That is why I have fought the belief that Adam Lanza was “evil,” a “monster.”

 

Because, my fellow Americans, “evil” and “monster” are de-humanizing terms. And when we begin to de-humanize anyone, we begin down the road that allows us to de-humanize anyone.

 

Let us not forget Hitler said the Jewish people were “evil.” Pol Pot said that the Cambodian intelligentsia were evil, leading to killing of Cambodians simply because they wore eyeglasses. The Hutu Militias said the Tutsi minority in Rwanda were “cockroaches.”

 

But it is not the same! You cry. I am comparing apples and oranges, you say. Tamerlan and Dzhokhar are killers! you say.

 

No.

 

They are SUSPECTED of setting off the bombs in Boston that killed 3 and maimed so many more.

 

We have a rule in our country: YOU ARE INNOCENT UNTIL PROVEN GUILTY IN A COURT OF LAW BY A JURY OF YOUR PEERS. This is part of the 5th Amendment of the Bill of Rights.

 

Here is the text of the Fifth Amendment:

 

No person shall be held to answer for a capital, or otherwise infamous crime, unless on a presentment or indictment of a Grand Jury, except in cases arising in the land or naval forces, or in the Militia, when in actual service in time of War or public danger; nor shall any person be subject for the same offense to be twice put in jeopardy of life or limb; nor shall be compelled in any criminal case to be a witness against himself, nor be deprived of life, liberty, or property, without due process of law; nor shall private property be taken for public use, without just compensation.

 

I am not talking about the failure to read Dzhokhar his Miranda rights. When there is a risk of severe and imminent danger to the public that can be waived. No, I am talking about those who wanted him dead without trial, without indictment by a grand jury (for this is surely an “infamous crime”) which requires the presentation of evidence.

 

This doesn’t mean I think Dzhokhar is innocent. But what I think doesn’t matter BECAUSE WE HAVE LAWS!!!! Laws that we do not throw away simply because we have been hurt.

 

And then the 6th Amendment guarantees Dzhokhar the right to a trial by an impartial jury of his peers and the opportunity to engage a defense and respond to the charges against him.

 

The text of the Sixth Amendment:

 

In all criminal prosecutions, the accused shall enjoy the right to a speedy and public trial, by an impartial jury of the State and district wherein the crime shall have been committed, which district shall have been previously ascertained by law, and to be informed of the nature and cause of the accusation; to be confronted with the witnesses against him; to have compulsory process for obtaining witnesses in his favor, and to have the Assistance of Counsel for his defence.

 

Some of you don’t like this but you should like it because it was designed to protect you and protect your children. “Well, I am never going to blow people up!” you say. That isn’t the f*cking point! The point is that the law must apply equally to everyone. Equal protection under the law.

 

You can’t just pick and choose what you want from the US Constitution. You can’t scream about the 2nd Amendment, which pretty clearly, if you understand 18th Century sentence structure, states that the right to bear arms is for the purpose of maintaining a well-regulated (key word being “well-regulated” militia in a time before the United States had a standing army or National Guard, not for any idiot to buy a Glock. But fine, you can have your Glock. But you would die to defend that Amendment you better damn well be prepared to die to defend the others, including the right to a trial by jury. I don’t care if you want Dzhokhar dead. He has not been charged and he has not been tried. No evidence has been presented against him. He has not been found guilty in a court of law or pled guilty before a court of law. So if the police weren’t there to protect him and a mob came to get him, you better f*cking believe I invoke my 2nd Amendment right and hold you off at gunpoint if I had to. And I would kill you if I had to. Because I believe in the Law. I believe in the laws established by the Constitution. And I will defend them to the death because they are the only thing that sometimes separate us from the darkest parts of our nature and the better angels of our nature.

 

And I would accept whatever the law wanted to do with me, as long as it is the law.

 

I don’t think many of you understand why I defend these killers. And yes, I believe terrorism is a pathology-not schizophrenia or bipolar but a pathology. Terrorists show behaviors which are consistent with anti-social diagnoses in the DSM-IV. That does not mean I believe they should be let of the hook. Never once, in my defense of Jared Loughner or James Holmes have I EVER said they should not be held accountable for the crimes they committed, mental illness or no. Never once have I said that people should not be held accountable for their actions. I say Loughner and Holmes are mentally ill to EXPLAIN why they did what they did, NOT TO EXCUSE IT. And I say Dzhokhar appears to have some sort of pathological socio-pathological tendencies, to explain (because he sure as hell doesn’t come off like someone who “hates America and wants to destroy our way of life” like I have seen some say), not to excuse.

 

I am not defending what these men and boys did, should they be found guilty. I could never defend what they did. They destroyed lives and like I said I value ALL LIFE. I defend ALL LIFE. No, what I defend is the rule of law.

 

And I defend life, even the lives of those who take it.

 

Because the purpose of our laws, the laws of our Constitution, are to defend life and liberty.

 

You like me when I defend Jani, because she is cute. But to quote a friend, mental illness isn’t always cute. It isn’t always Jani. Often it is ugly, uncomfortable, vicious, and sometimes deadly.

 

You’ve only ever seen Jani when she is cute. I have seen the other.

 

And that is why I stand up for both. I will defend all mental illness, even the ugly side you don’t want to see, the side you would rather see dead.

 

Some have ripped Susan and I for not listening to the “mental health community” who are “hurt” by our constant connection between mental illness and violence. They say we should “listen.”

 

I have listened.

 

But I also have an obligation to listen to those who have no voice because their disease has taken it away.

 

You see, we are human, and like any other animal, we are driven by own selfish needs. This is what has kept us and our ancestors alive since before they came down from the trees. We formed together into tribes and then into civilizations because it served our common purpose of survival.

 

And when you are mentally ill, you have a bit of tendency to narcissism. It’s not your fault. Most of us do. I am mentally ill and I have a tendency to narcissism. And narcissism isn’t only about you (no pun intended). It’s about everyone who is like you. You defend your own kind. That is why if you are functionally mentally ill and actively engaged in your own treatment, you hate me drawing connections between you and a mass killer. But that is not what I am doing. I am drawing a connection between us and our own humanity. However much those of you who believe in “evil” want to separate yourselves from killers, you can’t because they are human, too. You keep trying to separate yourself from certain humans and I keep trying to drag you back.

 

Why?

 

Because if we are human and they are human, where is the line between us? What makes some of not kill and others kill? It can only be something internal, something that we have not discovered yet.

 

I’m sorry. I believe in humanity. For a long time I didn’t. That is partly why I come off as such an asshole in January First. I lost my faith in humanity because of the judgment toward my daughter. But Jani gave me a precious gift, as did Bodhi. They gave me my humanity back.

 

Because of Jani, I have seen people go to the darkest places and I have seen them come back. I have seen humanity robbed by schizophrenia and I have seen humanity restored.

 

You commend me and Susan for not giving up on Jani.

 

Yet you condemn us for not giving up on those you deem “evil.”

 

And it is a fine line between Jani and other severely mentally ill kids and “evil monsters.” Somewhere along the line, something snapped. We didn’t see it and death happened.

 

So the “community” I say, you are the bravest people I know. Every day you live with a struggle most of can never comprehend. I admire you so much. You are my heroes.

 

But I am asking you go further. It’s not fair I know. Just the fact that you are alive, that you have not taken your own life, should be enough. I wish it was. But it can’t be, not in the world we live in. I need you to move beyond your fear that society will round you up and own those who, for whatever reason, lost the fight.

 

Because they are human too.

 

Society will not round you up. I will not let them. I would without question lay down my life in your defense as if you were my son or my daughter. Because you are. I will defend your right to live and your humanity until my last breath. And this is what I am teaching Jani as well.

 

But we are going to do this, we cannot draw these false distinctions anymore. We cannot disown the violent. Because then we give them no reason to work with us. We must defend all humanity, even its most ugly side.

 

This is not easy for me, either. On the 12th of February, 1993, two year James Bulger was led away from the side of his mother at a shopping mall in Liverpool, England by two ten year old boys, Robert Thompson and Jon Venebles. They led him across town to some railway tracks where they proceeded to do unspeakable things to him. A two year boy.  Then they dropped a 22 pound iron bar on his head and shattered his skull, which, I am sad to say, was probably merciful considering what they had done to him.

 

The full story is here: http://en.wikipedia.org/wiki/Murder_of_James_Bulger

 

Thompson and Venebles were caught, tried, and convicted as adults. However, the sentencing laws in the UK are very different and they received ten years, being the maximum the High Court could impose, as well as life-time parole. Upon release, they were given new identities and new lives to protect them. Venebles showed remorse (and has since returned to prison for other reasons). Thompson has never shown any remorse or interest in his crime and now lives under an assumed name somewhere in the UK.

 

Would I like to blow Robert Thompson’s head off? Yes. Do I feel he deserved to spend the rest of his life in a solitary cell? Yes.

 

Robert Thompson is the closest to “evil” I can think of. When I think of him, I think of nothing but hatred.

 

But… the law is the law, in this case, the law of the United Kingdom.

 

And sadly, if I had to defend his life, as much, oh my God, I would hate it, I would.

 

People say Susan and would feel different if it were Jani and Bodhi killed. We would want vengeance.

 

Vengeance? I can’t speak for other parents but I would be unable to function. I would have no interest in living. Without my children, I would want to die. The only possible reason to go on that I could find would be to do good work on this Earth in their name. But it would take me a long time just to get there.

 

Vengeance I would not feel. For how would killing the murderer of my children bring Jani and Bodhi back? That would be what I want. I would want them back. Killing the guy who did it does nothing for me.

 

So back to the bloodlust. I get it. I just told you. I never knew James Bulger but I see my son in him. I am not from Liverpool or even from England. And I want Robert Thompson dead.

 

But I will not teach that to my children. I will teach my children that life must always be defended, even when we would prefer not to.

 

Those of you who want Dzhokhar dead, what are you teaching your children? Do you think what they think when they see you celebrating a death, even if the person deserved it?

 

Please, I beg you. Do not teach them that. Whether they are mentally ill, autistic, or neurotypical, teach them that we must always defend life. That we must always fight for life.

 

Because if we are to help the mentally ill, we must believe that all life has value. Be it cute or be it ugly.

 

All life has value. All life must be defended.

 

All life is precious.

 

That must be our message, even to those who would seek to harm us.

 

We value life.

 

We listen to the better angels of our nature.

 

It's a Classic (Start Again)

We met with Bodhi’s inpatient doctor and social worker today and his diagnosis is…

 

Autism.

 

Specifically, what the doctor said is, “I see nothing beyond classic autism.”

 

I wasn’t actually looking for the “s word” (schizophrenia). I myself don’t see clear evidence of that. I keep looking at Bodhi and looking back at Jani’s past and trying to identify if there are similarities. I am trying very hard to not be denial like I was the last time. When I look back to 2008-2009, I remember the “imaginary friends” and the clear articulation of a world I could not see. Bodhi has no such ability yet. If he is seeing things that aren’t really there, he is not able to articulate that yet. Jani could tell the doctors in great detail about Calalini, 24 Hours, 400 the cat, the anthropomorphic numbers, etc. Bodhi barely talks at all other than to articulate what he wants in the immediate moment.

 

Which is the problem. Bodhi can articulate what he wants. Yet, when in that state, getting it does not calm him down. He goes through a list of things, as if he is frantically hoping one of those things will soothe whatever is causing his agony.

 

Because that is what it looks like: agony.

 

For the doctor, there is no sign of mood disorder. No sign of psychosis.

 

When I ask why Bodhi is the only autistic child I have ever known who has no problem with the lights and noise of Chuck-E-Cheese, I get no straight answer. When I ask why Bodhi happily socializes with other kids, perhaps not directly engaging with them in play appropriate to his age level but certainly aware of them and able to interact with them, I get no answer.

 

“Classic autism?” Maybe “new wave autism.” Does such a thing exist?

 

The upshot is that Bodhi is in a void.

 

That’s okay. I wasn’t expecting a diagnosis. Even though his teacher and his behaviorists do not see “classic autism,” he defaults to that waiting room because the doctors have nothing else to go on right now. I get that.

 

He’s been fine in the hospital. He’s cried for us a few times. He’s wanted to leave with us (and soon he will). But when I agreed to admit him, my greatest fear was that he would not be able to function in the hospital. He has, quite well.

 

And that is a problem that cannot be resolved. Physicians can only go by what they can see. I get that. Yes, they saw the videos. They saw him in the ER. That’s why they admitted him. But since then he has been relatively calm.

 

Symptoms always back off in the hospital and Dr. DeAntonio has acknowledged this. The hospital is a highly structured environment where there are always other kids and always activities going on. Bodhi does well in school for the same reason.

 

One of the misconceptions about psychosis is that it stays the same through all environments. It doesn’t. Like an animal, it will respond to its environment. The more engaged a person suffering from psychosis is, the less influence the psychosis has.

 

Makes me wonder where the “Idle hands are the tools of the Devil” saying came from. If psychosis is a “devil,” it definitely gets stronger when there is little to no activity.

 

Admittedly, I don’t know much about autism. I had assumed that autism remained fairly consistent across all environments while psychosis does not. Perhaps I am wrong about this.

 

Not that it really matters. What matters is that the environment that Bodhi needs is similar to the environment Jani needs: one of constant human activity. Susan and can’t possibly do that on our own. We are only two people.

 

But we don’t have a choice. There are no other options. The UCLA day program no longer accepts children under the age of 8 (a change from Jani’s time). We already have every service that is currently available.

 

On a side note, I really don’t understand why psychiatric wards still employ social workers. They are nice people, don’t get me wrong. I just don’t see their purpose. Their purpose is to find resources (the very definition of “social work”). I could understand their existence 20-30 years ago when services existed. But the services they used to refer departing patients to no longer exist. They are like clowns long after the circus has left town. The context for their existence is gone. I am sure they try but I imagine their rolodex has got to be pretty damn small by now. There is nobody left to call.

 

I wasn’t expecting a diagnosis. Were you? That’s not how it works. Treating mental illness has become the equivalent of treating a viral infection. They don’t know quite what it is and they don’t know how to treat it, so they send you home to rest and drink plenty of fluids. Your ear may hurt and your throat may be crimson but have no fever and your white blood cell count is normal. Probably viral. Go home and rest.

 

That’s fine. I am prepared. I got complacent. Bodhi needs 1:1 attention at all times, just like Jani. Once again for Susan and myself, it will be one parent, one child. It will have to be me with Bodhi because only I am still strong enough to physically hold on to him in one of his “tantrums.” Susan can’t. Bodhi is strong. From now on, I won’t take him out without back-up. I can’t risk reaching for my wallet to pay something and he runs off. I have to make sure I always protect his head. I have to tune out whatever looks may come from the general public and focus on his safety.

 

That means I will need my sleep. That means this may be the last blog for awhile. I can’t risk being tired because I was up writing. Or grading student papers. Or running the Jani Foundation.

 

Thankfully, the mission statement sent to the IRS is pretty broad. This is good because we will have to re-focus on what Susan and I and the other parents on the board with autistic/mentally ill kids can feasibly do while ensuring the safety of our children. Because it’s not like anyone is going to.

 

So we will have to figure out what the Jani Foundation can do for mentally ill kids without most of its board ever being able to leave their respective homes. Big plans are out the window. IEP support, we can do. Presentations on childhood mental illness while the kids are in school, we can do. Financial support because it’s hard to work when your child needs to be watched constantly, we can do (although not us individually-none of the JF board members can, even though we are always on the financial brink ourselves). That will be interesting. The poor fighting for the poor. Educational programs for SMI kids during school holidays we can probably do because Susan and I can take Jani and Bodhi with us.

 

And I think that is pretty much it.

 

In regards to Bodhi’s time at UCLA, the only thing I am actually upset about is that they won’t do an EEG, which his outpatient psychiatrist has wanted to rule out neurological causes. Bodhi had an inpatient neuro consult and they decided that, based on the lack of symptoms of seizures, it wasn’t worth the risk of sedation. I don’t know. They are probably right. There is probably nothing physically wrong with Bodhi’s brain. I just wish they would rule it out. It seems like taking a calculated risk with my son’s life, something I am not accustomed to UCLA doing with my children. “There’s probably nothing wrong, so let’s not look” is the attitude.

 

The truth is, of course, that they know insurance will balk at paying for it as they can’t establish medical need.

 

I wonder how many people have died of cancer that could have been detected earlier because their doctor couldn’t establish medical need?

 

The truth is, medicine in America is the best in the world…. once you are actually dying. Up until then, doctors are declining to run tests because they can’t justify it to the insurance company.

 

In the end, not much has changed in the six years since Jani started down this road. I have no idea if Bodhi is going down the same road. Like her, I will travel with him where-ever he goes.

 

But I can tell you the start of the road looks exactly the same.

 

Oh, one more thing.

 

“Classic autism” will protect Bodhi from criminal charges if in ten years, during one of his “tantrums,” he smashes someone’s nose in, right? “Classic autism” will protect him from being tasered or shot by police, right?

 

I mean, in America we don’t punish those who can’t control their actions due to a brain malfunction.

 

Right?

Bodhi Went (Bury the Lie)

 

There is a corridor that runs from the vestibule of UCLA Resnick Neuropsychiatric Hospital’s “4 West” to what is now called “Unit C” but in Jani’s day it was called “Swing Unit.” To the right is the child and adolescent eating disorders unit and to the right is the adolescent unit. Windowless, it reminds me of an airport jetway. When you walk it, you don’t look to either side. Your eyes are focused on where you are going. You don’t blink. You just watch the doors to Unit C get closer and closer until you are there. A nurse pushes the door open and you are through. I swear the lighting dims but it is probably just a visual representation of the feeling of blackness. The world seems darker. You never look back at the door closing behind you, although you hear it. And your world feels smaller because it is. To enter Resnick, although a beautiful hospital that looks more like a hotel than a psych ward, is to go through a series of compressions: hospital to floor, floor to corridor, corridor to room, room to chair, chair to yourself.

 

Coming out is not the same. You rush out, like a diver trying to fight his way to the surface because you know the bends are coming. There is no point in stopping to decompress. You know it is going to hurt like hell. And the worst part is you know it won’t kill you. You have no hope of passing out, of blissful unconsciousness. It’s like a kidney stone. You’re gonna have to feel it.

 

I have walked that corridor probably hundreds of times now. I’ve walked it when Jani was being admitted, I’ve walked it to visit her, I’ve walked it to visit her friends, I’ve walked it when it time to bring her home.

 

Tonight, I walked it again, acutely aware of the little hand in mine. Because it was not Jani’s hand.

 

It was Bodhi’s.

 

Bodhi went to the place only Jani has been to now.

 

My little man is inpatient. My little man is without his family. I have no idea how he is doing. I pray he is asleep but I am too chickenshit to call and find out. I am terrified of his fear, of hearing him scream for Mommy, for me, for Jani.

 

I didn’t even say good-bye. Once I knew he had his one-to-one, once I saw the nurse with him, once it was time to go, I began to break. In all the times I left Jani there, I never cried. Later, when I got home, in the dark of her empty room, yes. But never on the unit. I suppose because I knew she would be okay there. She was safe.

 

But this time, as soon as I turned back to look at him, playing cars with the nurse, as soon as I saw Bodhi and not Jani, it was too much. I started to cry, that cry where you squeeze your eyes together trying to fight it back so you don’t make a sound. Our friend who went with me grabbed me and rushed me toward to exit. In a fleeting thought between the waves of pain I realized she was touching me, something she had never done before. I am not a hugger, except with my children. When somebody puts their arms around me, that is a sign that whatever façade I think I have left is gone. I banged on the glass of the nurses’ station to be let out. I was already crying, whimpering, but I had to get out before the Wail. Down the corridor. Eyes are blurry and sting. Snot already fills my nose so I can’t breathe through it. Halfway down, I think I make a show of wiping my eyes, but I think I start to bend over. Crying. Crying. Get me through the second security door into the vestibule. The nurse looking back to make sure the second door closed before the outer door can be opened. Out into the unit. Crying freely. Hand over my mouth. Can’t breathe. A large group of people, a family, clearly there for somebody in the ICU directly opposite the psych unit (whole families never come to the psych unit but when Grandma is dying every cousin and their fucking cousin comes). They are not crying but I am. Into the elevator. Can’t look at myself in the reflective glass of the inside of the elevator. Out. Down the central concourse.

 

And I sit down and ball.

 

It wasn’t supposed to be like this. It wasn’t supposed to be him. It was supposed to be Jani. Bodhi just had autism. Jani has schizophrenia. Yes, autistic kids have been on the unit before but they are the 12 year old non-verbal in diapers kind. Bodhi is my baby boy.

 

Of course, Jani was my baby girl once.

 

This wasn’t my intention. I took him to UCLA for a neurology consult, to get the EEG his psychiatrist wants. Maybe he is having seizures. I wanted him checked out physically because he doesn’t cooperate like most kids and he had been complaining about his mouth hurting and his tush hurting.

 

I should have known. I didn’t go in with Bodhi. I was providing my insurance information. I even handed over my debit card to pay the $50 copay my insurance requires for an ER visit when there is no admission. But the woman gave me my card back.

 

I should have known then. There is no copay if the patient is admitted from the ER.

 

I go back to triage and ask the nurse to take me to Bodhi. I follow her. I keep expecting her to turn off into one of the dozens of rooms.

 

I should have known then. I should have known when she pointed to the double doors at the back of the ER, telling me to turn left right before them. Only then did Bed #00 connect in my mind.

 

#00, #01, and #02 are the psych hold beds.

 

No, no, no. Bodhi needs a neurologist. His psychiatrist wants him to get a neuro work-up.

 

I should have known when talking to the neurologist, the attending psychiatrist puts his head in.

 

“Oh, I’m sorry,” his says to his neurologist counter-part.

 

“No, it’s fine. I’m about done.”

 

“It’s okay. I’ll wait.”

 

I should have known then. Psychiatrists never wait for anybody.

 

“I don’t see any epileptic activity,” the neuro says to me.

 

“I’d like him to get an MRI. What if there is a mass there? What if that is causing the behavior?” I ask.

 

“I mean, there certainly could be,” like I am child and he just accidentally told me Santa Claus doesn’t exist. “We’ll check that out. But he’s not showing the signs I would expect to see…”

 

“would expect to see…” Same thing UCLA said about Jani and autism four years ago. “Not what I would expect to see.”

 

I should have known.

 

“He’s got good muscle tone. No limpness anywhere. Eyes tracking.”

 

Should have known.

 

When the psychiatrist comes in, he is immediately interrupted by his cell ringing. Usually they just check the number and put the phone back in their pocket.

 

“Ah, excuse me,” he says, seeing the number. “I have to take this. It might be Dr. Howe calling back.”

 

Dr. “Howe.” Jani’s outpatient psychiatrist in January First. Bodhi’s as well. The one who diagnoses him with autism.

 

I should have known.

 

UCLA always talks the outpatient doctors. But Dr. Howe isn’t in the office on Friday. The UCLA doc talked to her for a long time. Twice.

 

I should have known.

 

He sees Bodhi, who is actually calm at that precise moment. He tells me he is going to talk to “the team.”

 

“The Team” are the faceless doctors you never meet who make the decision about whether to admit.

 

About an hour later, he comes back. “Okay, so I talked to my boss and I am going to have them bring you paperwork to admit him.”

 

It takes me a second to process that. “What?”

 

The psychiatrist looks up at me, surprised. “I’m sorry,” he says, “I just assumed we were all the same page here. You do want to admit him, right?”

 

He’s a psychiatrist. Not a neurologist. Bodhi isn’t going to neuro.

 

Now reality hits. I think my mouth is hanging open. I don’t know what to say. This has never happened to me before. Every time I have come here with Jani I’ve had to fight tooth and nail to get her admitted and yet without me even asking they want to admit BODHI?

 

“Does…does he need it?” I think I finally manage.

 

Now I can see that the psychiatrist realizes I wasn’t prepared for us. He looks to hi right as if there was somebody there who could help him.

 

“Ah, I’ve talked to the team and we all feel like it would be a good idea for him to be admitted.”

 

Only later could I process that it wasn’t even this easy to get Jani into UCLA. At the time, I was in shock. I brought him in, expecting them to take some blood, sedate him, and give him the EEG. Never did I ever expect that Bodhi would not be coming home tonight. I’d even said to every doctor I had seen “If this is behavioral, fine, we’ll deal with it. I just want to make sure it isn’t something physical.” I wasn’t even looking for meds.

 

Looking back now, I was delusional. I had gone to UCLA because I feared for Bodhi’s safety at home. You can see the video.

I was afraid he was going to hit his head in one of those states and crack his skull open. I was afraid he was going to run out the door (in a second video I uploaded but Youtube deleted, probably because Bodhi had just gotten out of the bath and was naked-I thought nothing of it but obviously somebody flagged it. Probably some kind citizen wanting to protect Bodhi’s privacy when he and Jani turn out to not really be mentally ill and write their own books about how Susan and I exploited them for fame and money-look for it on your Kindle in 2020 and 2025 when Jani and Bodhi are legal adults, respectively).

 

“Look, it is totally your decision,” the attending psychiatrist says to me. “If you don’t feel comfortable…”

 

No, I don’t feel comfortable.

 

Not even comfortably numb.

 

“…but I think it is a good idea.”

 

By the way, Bodhi’s tush hurts because he keeps sticking his finger up his rectum in a panicked state.

 

Not this again.

 

It is happening all over again.

 

Every other word out of my mouth was “autism.” Both the neurologist and the psychiatrist nodded. Both asked me to confirm that Bodhi actually had been officially diagnosed with ASD. But it was in a “You sure?” tone of voice, like when you tell a friend a story and they don’t believe you but are too polite to say anything.

 

That was all they asked. Neither brought up autism. After I walked that corridor with Bodhi, the intake nurse asked me what his triggers are.

 

“They aren’t consistent. Sometimes it is because we don’t have a pink Starburst. Another time it might be because we don’t have teal-colored candy.”

 

“I mean, like some kids are set off by crowds, loud noises…..” the nurse said. “Anything like that?”

 

Only now does it occur to me that Bodhi is the only autistic child I have ever met who loves Chuck-E-Cheese. I’ve never seen another young autistic child handle the bright lights and noise for more than 10 minutes.

 

And then I realized why the doctors didn’t ask about autism.

 

I should have known.

 

UCLA is one of the premier autism research facilities in the world.

 

“He has some ‘autistic-like’ behaviors,” the psychiatrist had told me.

 

But Dr. Howe has been sticking to autism for two years now.

 

There is a difference between “autistic-like behavior” and “autism.”

 

I wanted Bodhi to just have autism. That’s not so bad. I could live with that.

 

But he doesn’t.

 

The psychiatrist and the neurologist both asked many questions about mental illness in the family.

 

Yes, a cousin of a cousin spent his whole life in Napa State because he used to scream all the time.

 

But that is not Bodhi. Bodhi is not 1946. Bodhi is now.

 

Bodhi is not Jani. Bodhi can’t bathe himself (Jani can at least run a bath and sit in it),  he can’t dress himself, he can’t really feed himself, he can’t go to the bathroom by himself.

 

“So he’s not potty-trained?”

 

“Well, he is. But you have to prompt him.”

 

“So like give him reminders?”

 

“No, you have to take him to the bathroom, pull down his pants, and position him.” Otherwise he just stands there.

 

Bodhi is smart, but has the verbal capacity of a three year old and about the same abilities. He needs help for everything.

 

When Jani first went to the hospital, she was so psychotic she didn’t care. By that time the psychosis had advanced quite severely. I held her as my baby girl but in my heart I knew my baby girl was having her mind eaten away.

 

I don’t see that with Bodhi. All I see is panic. Frantic rage which nothing can satisfy.

 

But just as I was deluded five years ago into thinking I alone could keep Jani ago, I fell into that same delusion again. I can take him home and keep him safe.

 

But that is the difference between a real delusional thought and the vernacular use of the word: Jani’s delusions never go away. She still believes in 24 Hours and Eighty.

 

My delusions get shattered by reality.

 

I am five years older. Bodhi is as fast as Jani and stronger. I am tired. I am getting complacent. I am making mistakes. And one of those mistakes could kill Bodhi.

 

In the end, I left him at UCLA because (and I keep trying to tell myself this) he is safer there than he is here.

 

So in the end, as I sat in the concourse, balling my eyes out, I was crying for many things. I was crying for Bodhi, that this happened to him. I was crying, hating Susan for being right, again, when I so desperately wanted her to be wrong. I was crying for myself, feeling a pain so great that for a split second I actually wished I had never had children. And I was doing what every parent who does through this does: remembering every shitty thing I ever did to Bodhi, minor though they are compared to Jani, and hating myself.

 

Because I am afraid. I cannot shake this fear that I will never hold him again. It’s not just that I am afraid I shattered his bond with me (although I am very much afraid of that, too. I was afraid of that with Jani, even though it turned out to not be true). It’s that I don’t know what his life will be like now. When I thought he had autism, I deluded myself into thinking I knew.

 

And now I know nothing.

 

Only one thought keeps ripping apart my soul.

 

Did I give him a good life?

 

Did I do enough?

 

And no matter how good of a parent I may have been or will be, the answer for me will always be “no,” as it would be for most of you parents.

 

No matter how much you value someone, no matter how much you love them, it will never seem like enough when you might be losing them.

 

Am I losing Bodhi?

 

“You got Jani back!” you say.

 

But they are not the same, are they?

Shoot 'Em in the Back Now

Are police officers cowards?

 

That question has been rattling around my brain since I read this long investigation by the Portland (Maine) Press Herald http://www.pressherald.com/news/Shoot-Across-nation-a-grim-acceptance-when-mentally-ill-shot-down.html?pagenum=full. Their investigation found no federal accounting or reliable national data on the number of mentally ill or suspected mentally ill killed by police but estimated based on spotty state reporting that about half of the 375-500 people shot and killed by police in the United States each year had a history of mental health problems.

 

Granted, that is a pretty small number considering the average of 40,000 encounters between police and American citizens every year. The Press Herald found it easier to compile statistics for Maine given its relatively low rate of violent crime. The investigation found that  “[i]n Maine, 42 percent of people shot by police since 2000 — and 58 percent of those who died from their injuries — had mental health problems, according to reports from the Maine Attorney General’s Office. In many cases, the officers knew that the subjects were disturbed, and they were dead in a matter of moments. “

 

Here are some other statistics from this report:

 

In New Hampshire, four of five people shot and killed by police in 2011 had mental health issues (80 percent); a sixth person shot by police also was mentally ill but survived, according to reports from the state’s Office of the Attorney General. All six shootings were found to be justified. A review of the New Hampshire attorney general’s reports on police shootings from 2007 through 2012 showed that seven of nine people killed by officers during that period had mental health issues (78 percent).

 

In Syracuse, N.Y., three of five people (60 percent) shot by police in 2011 were mentally ill, according to news reports. One of three people who died in those shootings was mentally ill.

 

 

In Santa Clara County, Calif., officials reported that nine of 22 people (41 percent) shot during a recent five-year period were mentally ill, according to a crisis intervention training guide.

 

In Albuquerque, N.M., 75 percent of police shootings in the last two years had a “mental health context,” the state’s Public Defender Department noted in its annual report for fiscal 2012.

 

The Police Executive Research Forum conducted a separate review of use of force by Albuquerque police from 2006 to 2010. Hired by the city, PERF found that 54 percent of people “whose actions led APD officers to use deadly force” had a confirmed history of mental illness. Elsewhere in its report, PERF noted that half of the 37 people shot during that period died from their injuries.

 

And here are some of the individual cases:

 

In Houston, Texas, a pen-wielding, wheelchair-bound double amputee is fatally shot in the head when police are called to a group home for the mentally ill.

 

In Saginaw, Mich., six police officers gun down a homeless, schizophrenic man in a vacant parking lot when he refuses to drop a small folding knife.

 

In Seattle, Wash., a police officer fatally shoots a mentally ill, chronic alcoholic as he crosses the street, carving a piece of wood with a pocket knife.

 

In Portland, Ore., police check on a man threatening suicide and wind up killing him with a single gunshot in the back.

 

In most of these cases and others like it, the officers involved were cleared and shooting was ruled “justifiable homicide.”

 

So back to my original question: are police officers cowards?

 

Of course, nothing is black and white (no pun intended). Police have seen a dramatic increase in interactions with the mentally ill since the early 1980s, or the time that the state psychiatric institutions began closing at a rapid rate. So police, like the prisons, are now dealing with something they were never trained to deal with. They are dealing with the failure of de-institutionalization, or more specifically, the failure to replace the institutions with anything remotely resembling chronic medical mental health care. Communities aren’t hospitals. Why anyone ever thought they would be able to do what the psychiatric institutions did is beyond me. Sure, we could still create effective community mental health, but it wouldn’t look anything like the hodge-podge “recovery” crap you see out there today, assuming you can even find that. It would require a “whole life” support, with people who cared about you checking up on you every day.

 

Right now, when a mentally ill person leaving prison, they get seven days of meds and a number to call when they get out.

 

What do you think is going to happen?

 

If you are discharged from an acute care psychiatric unit, you are given no pills at all, just a prescription. Unless you have people looking out for you, what do you think will happen?

 

Of course, that assumes you actually have the wherewithal to get yourself to an acute psychiatric ward in the first place and you meet the strict criteria for admission, which ironically is “immediate threat of harm to yourself or others.” Meaning that at the exact moment you present to the ER, you have to have thoughts of killing yourself or others. Thoughts in the past or thoughts in the future don’t matter. Only this moment, or insurance or Medicaid won’t pay and the docs won’t treat.

 

Hmm. “Immediate threat of harm to yourself or others….” Well, that sounds like a situation for the police to handle, doesn’t it?

 

Do you see the problem?

 

By the time you are “an immediate threat to yourself or others,” chances are you are more likely to get tasered or shot by police than get a comfy bed in a psych ward.

 

So why do such a high proportion of mentally ill either get seriously hurt or die in encounters with police?

 

“Stigma!” you shout.

 

No. I think your average African American or Latino male can shout “stigma,” but not us advocates of the mentally ill. The cops don’t “profile” mentally ill.

 

After all, it’s kind of hard to tell a crazy person apart from the rest of us, until they actually get crazy.

 

The mentally ill get shot and killed at a disproportionate rate for one reason and one reason alone….

 

They don’t comply.

 

Think about it. If an officer tells you to sit the fuck down on the curb, you sit the fuck down on the curb. Why? Because they got a weapon strapped to their side and you don’t want to give them a reason to use it. You are capable of thinking logically. I just do what the officer tells me and he will probably let me go.

 

You do what they tell you. You do what they tell you because you know who they are and you know what can happen.

 

What do the untreated mentally ill hear when the cops yell “Police! Don’t move!”

 

I don’t know. Do the voices in their head suddenly stop screaming at them? Can they even see the police? That scene in the book where the Sheriff’s Deputy came to Jani’s school? I couldn’t take my eyes off his gun. She barely looked at him and I know she didn’t see the gun, didn’t feel the fear I did every time I see one. She gave no indication she even recognized him as a police officer. He was just another person on the fringe of her world.

 

Thank God she was a six year old girl at the time.

 

But I’m terrified for my friends with severely mentally ill teenage sons.

 

Those of you who have severely mentally ill children, children who suffer from psychosis, leave a comment either here or on the JF Facebook page what happens when you tell your child to “Stop!” while they are in a psychotic episode?

 

Now replace your house or apartment with a dark street outside a 7-11 and replace you with a cop with his/her gun drawn.

 

What do you do when the child you love displays violent behavior toward you?

 

What do you think the cop will do?

 

So what separates you from the cop, other than not having a 9mm Beretta strapped to your side?

 

You can tell the difference between your child and the disease they suffer from. You can attribute the violence or threatening behavior to the mental illness and not to your child who is, in that moment, no more than a puppet being pulled by malfunctioning neurons.

 

You spend your entire life trying to protect your child from the world and protect the world from your child.

 

But one day you won’t be there.

 

And your child’s brain will betray their body.

 

And if you are lucky, your child will just be tasered dozens of times.

 

And if you are unlucky, your child will lie in a pool of their own blood, simply because they suffer from a disease that can lead to uncontrollable behavior and inability to think logically.

 

How dare I ask if those sworn to protect and serve are cowards! They put their lives on the line every day!

 

Yes, they do. And many of them die for it.

 

Which perhaps makes the others a little too quick to pull the trigger on a “threat.” After all, these officers have wives, husbands, and children as well. They want to go home to them. Why take an unnecessary risk when a second of delay might be difference between the suspect going down and “officer down?”

 

No, they aren’t cowards. They are afraid. Maybe not even afraid for themselves. Maybe they are afraid of leaving their wives, husbands, and children with a neatly folded American flag.

 

But unfortunately that fear can also leave wives, husbands, children, and parents without a loved one. And just like that American flag is no consolation for your family’s loss of you, Officer, there will be consolation for our loss if you put a hail of bullets in our children.

 

Jani doesn’t fear the police. That’s good. I don’t want her to fear the police. I want her and Bodhi and every other mentally ill child to see the police for who they are: protectors of the innocent.

 

The mentally ill are innocent.

 

CIT training is a start, but it is not enough. As officers, you were not supposed to be mental health practitioners, but you’re going to have to be. Just like we parents. We will have to work together.

 

One thing that we can do together is destroy the obstacles like HiPPA that prevent you from calling us when you come across our children. I know there are other calls out there. I know dispatch wants this resolved. But isn’t cordoning off the area, holding back, and waiting for us parents to come better than shooting? I know you would want that if it were your child. Ask Ron Thomas. He was one of you. And now he is one of us.

 

The Jani Foundation plans to go a step beyond CIT training. We want to bring you to meet our children and bring our children to meet you. They need to learn, have it drilled into their heads, what they need to when confronted by your kind. And you need to learn how they see the world.

 

They may not see your gun.

 

But if we work together, maybe they can see you.