Michael Schofield's Blog, page 3

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?