Author: mschofield@janifoundation.org

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.

 

Open Your Eyes (The Ballad of Bobby)

I was sent a personal message from a friend today. Her son has been called “a unique and complex case,” which is a euphemism in world of psychiatry and mental health community resources for “We have no fucking idea how to help your child.”

 

Which raises a couple of interesting points:

 

At what point does a person’s condition cease to be “unique?”

 

In this particular case, the child in question has a dual diagnosis of both autism and severe mental illness but I want to share something with you.

 

Have any of you with children with severe mental illness ever been told, “Oh, this is your run-of-the-mill bipolar disorder?” Or “This is your average case of schizophrenia?”

 

No?

 

I didn’t think so.

 

I have yet to meet a parent of an “average” or “typical” severely mentally ill child.

 

So why do parents keep hearing this phrase, like the world has never seen a child like theirs before?

 

Especially since the professionals who say this about your son or daughter don’t exactly rush to the phone and call the NIMH, the NIH, or the CDC, right? I mean, that is what you are supposed to do when presented with a brand new pathology, right?

 

No?

 

Why not? Our children are conundrums of medical science, you say. Shouldn’t you be making a phone call? We need to stop this in its tracks, don’t we? We need to isolate the victim until the pathogen can be found and then….

 

…oh, that’s right. Mental illness isn’t contagious. This mentally ill child and his or her family can walk out of your office and you are under no obligation, are you?

 

It’s never going to come back to bite you, is it? Even if months or years later this child shoots up a movie theater or an elementary school, nobody is going know you were involved, will they? HiPPA will wash the blood from your hands. No one will ever know. It will just be the child, who is now a “monster,” and the parents who must have been in denial. CNN will never know that the parents came to you years earlier for help and you turned them away because “it was a unique and complex case.”

 

Unique?

 

Is that what psychiatrists and social workers said 40 years ago when the state hospitals were still open?

 

Here is how we know that kids with bipolar and schizophrenia aren’t a new epidemic, a creation of the pharmaceutical happy psychiatrists and their prescription pads:

 

Because there are bipolar and schizophrenic adults.

 

And I have yet to meet one that says he or she had no symptoms as a child.

 

By the way, it’s also true that there has been a dramatic rise in the cases of AIDS in the last forty years. A 100% increase! Where are all these cases of AIDS coming from?

 

Is it the anti-retrovirals? Are doctors over-diagnosing HIV?

 

It seems to be human nature to believe that if you haven’t heard of it until now, it must not have existed.

 

40 years ago these “unique and complex” cases weren’t so “unique and complex.” They were “mad.” “Disturbed.” “Manic Depressive.” “Infantile schizophrenia” (the old name for what we today call “autism spectrum disorder). And just plan old schizophrenia.

 

One day, Bobby, who had always been a bit “odd,” disappeared. You heard rumors about Bobby threatening his parents with a knife. The police came. Bobby left. Bobby’s parents disappeared for a while. Then they came back without Bobby. Bobby was in hospital for a “stress” if he was male or a “nervous breakdown” if she were a girl. You were told that Bobby would be back soon.

 

But Bobby never came back. Life went on. Vietnam, Richard Nixon, Kent State, etc, etc. Eventually, you forgot all about Bobby.

 

Then years later, you are driving down the street. Maybe you got  kids of your own in the back seat. You see a dirty homeless man pushing a shopping cart, mumbling to himself.

 

You look again. Could it be?

 

It’s Bobby. You barely recognize him under all that grime and facial hair.

 

Do you stop? Probably not.

 

Fast forward a few more years. One day, you see Bobby again. This time he is bussing your table at the local Denny’s. He is cleaned up now. You freeze, wondering if he will recognize you. He doesn’t. You debate whether you should say something. But curiousity gets the better of you. What did happen to Bobby?

 

“Bobby?”

 

He doesn’t seem to hear you the first time. You say his name again. He looks up, with a slightly paranoid look as if he is not sure whether your voice came from his ears or inside his head.

 

“Bobby, it’s me, _____________________! We lived next door to you. I was a few years younger.”

 

“You don’t live next door to me.”

 

“No, when we were kids.”

 

“Oh, yeah! How you doing? Are these your kids?” He is acting like he remembers you but you are not convinced he really does. There seems to be a fog, like you’re a character in a movie that he thought was over.

 

“What happened to you, man? You disappeared?”

 

He mumbles something about being in Sonoma State Hospital until they kicked him out when it closed but things are better now. He has an apartment.

 

Every single person over the age of 50 knows a “Bobby.”

 

Bobby was “odd” when you were kids because he had schizophrenia. But in those days diagnose was done within the wards of state psychiatric hospitals.

 

Now they are done in outpatient offices.

 

Back then a team of doctors made the diagnosis.

 

Now the insurance company or Medicare has to agree with it.

 

Back then, they shot you with Haldol.

 

Now anti-psychotics are a cottage industry, with their names on pens and bright brochures in doctors’ offices. And they are expensive.

 

In short, it seems new to you because what was one done inpatient over months and years is now down outpatient for 15 minutes once a month.

 

That, and 40 years ago CNN and Fox News didn’t exist. The internet didn’t exist. And so news media didn’t need to generate 24 hours of content. Back then, there was no time to talk about Bobby threatening his parents with a knife. Walter Kronkite only had 24 minutes cover the news and there was Vietnam and Watergate. Even local news didn’t have time for that. There were no “fluff” pieces back then, no “human interest” stories. The 11 o’clock news (or 10, depending on where you live) went like this: murder, murder, attempted murder, Zodiac killer case going nowhere, rape, attempted rape, do you feel President Nixon should resign?, weather, and sports.

 

Then “Good Night and we’ll see you tomorrow.”

 

And forty years later, a family gets covered by the health reporter for the LA Times, which gets into the hands of the Oprah Winfrey Show producers, and the rest is history.

 

The doctors and mental health “professionals” that you go to for help now have grown up in an entirely different world, a world without state psychiatric hospitals, a world where the media spins serious social issues into “human interest stories,” a world where there are no “old ones” left to tell them what it was like in day before doctors diagnosed you with an iPad.

 

Your child is not “unique.” My child is not “unqiue.” There are hundreds of thousands of Jani’s in the United Stated. They are only unique in the sense that the brain is not the liver. All livers are pretty much the same. The brain? We don’t know enough about it.

 

No two individuals with the same diagnosis of a serious mental illness will EVER present with EXACTLY the same symptoms. This is not the flu we are talking about. We are talking about the most complex organ in the human body, you know, the one that actually CONTROLS everything the body does, the one where THOUGHTS and FEELINGS come from.

 

Everything you or me or Jani or Briana or Mari or Cole or Jake are is encased within the confines of our skull.

 

And we don’t know a fraction of what can go wrong in there.

 

And we don’t have to.

 

But what we have to know is how to help.

 

And we can’t be doing that if every child with a mental illness is “unique and complex.”

 

Unique?

 

No.

 

Complex.

 

You betcha.

 

But “complex” is not an excuse not to try.

 

Because 40 years ago, “complex” could be locked away in asylums.

 

Today, we have no system at all for treating chronic mental illness.

 

Back to my friend and her son with dual diagnosis. She made a presentation to some bigwigs in her state (South Carolina) on the failure of services for autism and services for the mentally ill to TALK to each other, let alone work together. She has faced autism therapists who refuse to learn about severe mental illness and mental illness workers who refuse to learn about autism.

 

On her own, she develop the presentation on dual diagnosis (ASD and SMI) and came up with trainings.

 

I am very proud of her. She’s a mom, like the founders of NAMI were.

 

Speaking of NAMI, she was writing to me because for years she asked NAMI for help in her times of crisis. For years she asked NAMI for help developing a dual diagnosis training system. For years she asked NAMI to utter a word at all.

 

And they didn’t.

 

So she did it on her own, while raising her young ASD and SMI son. She built a movement.

 

And now NAMI wants their name on it because “important people”(their words) are involved.

 

I thought her son was important.

 

I thought all kids suffering from severe mental illness are important.

 

Ah, I think they mean South Carolina policy makers.

 

Oh.

 

I know this sounds like a pissing match. It is, after all, an unwritten rule that one non-profit does not attack another.

But here is the problem.

 

The Jani Foundation shouldn’t have to exist. NAMI is the National Alliance on Mental Illness, right?

 

Ever since our story became public, family after family has reached out to us, looking for help and support. And family after family, when we ask them, “Where’s NAMI?” have told things ranging from being told “There is nothing we can do,” to being outright ignored.

 

So tonight I decide to go to NAMI.org and finally give the organization a fair shake. I wanted to look at them objectively and without anger. I mean, I am now the head of a non-profit myself and I am getting a crash course in how hard it is. I really wanted to be fair.

 

 

On the front page, big pop-up saying that they need “you” more than ever and to please donate. Okay, no foul. We ask for donations too. I don’t know if I would do a pop-up because it is annoying, and I’m not currently searching for help for my in-crisis child.

 

“Parents of Children with Mental Illness Share Stories with Congress.” Okay, good, good. It seems that since Newtown NAMI National is embracing childhood mental illness more. Not going to criticize them there.

 

“Fitzpatrick encourages early screening.” Good, good. I agree.

 

Words are nice. Actions are better. Let me click on “Support & Programs,” third tab from the left behind “Mental Illness” and “Treatment.”

 

First thing I see is:

 

Find the support you need:

 

NAMI HelpLine

 

The Information HelpLine is an information and referral service which can be reached by calling 1 (800) 950-NAMI (6264), Monday through Friday, 10 a.m.- 6 p.m., EST or by email at info@nami.org

 

Good, good. I mean, I have never known mental illness to respect banker’s hours, but I get it, they only have so many staff. You have to have limitations somewhere.

 

I click on “NAMI HelpLine.”

 

Trained volunteers provide information, referrals, and support to all who have questions about or are affected by serious mental illness. (Okay, the phones are manned by volunteers. That explains the banker’s hours).

The Information HelpLine offers:

  • Information.  We provide general (non-professional) information on illnesses such as schizophrenia, bipolar disorder, depression; issues affecting children, adolescents & young families; general questions about medication; NAMI programs (such as Family-to-Family and In Our Own Voice); NAMI policy positions (such as mental health parity); and more.  The same number you call for referrals is also the same number to get NAMI policy positions? Well, maybe they don’t have the money for multiple lines.
  • Referrals.  Callers are referred to NAMI state offices, local affiliates and support groups throughout the country and to other organizations serving the needs of those affected by serious mental illness.
  • Support.  Trained volunteers,consumers and family members,are in a unique position to offer support and empathy from people who know what it’s like and who have “been there.”

 

 

 

Found the problem. Did you see it? “Callers are referred to NAMI state offices, local affiliates…..”

 

NAMI is a membership organization, constructed of “affiliates.” Which in an of itself is not a bad thing. But this explains why families’ experiences with NAMI vary so widely.

 

Who makes up the leadership of the local affiliates? Is it somebody who will fight to get your child inpatient in a good hospital?

 

Or is it somebody who wants to rub elbows with the local elite?

 

It all comes down to the personal priorities of whomever heads up the local NAMI affiliate.

 

It comes down to who are the “important people” to them?

 

Policy-makers?

 

Or your children.

 

I guess that is the difference. Sure, I agree with many of NAMI’s policies. Sure, I want to see the laws change.

 

But I’m not going to count on it. And I’m not going to wait on them. And I sure as hell won’t give them a free lunch just so I can pretend they are actually listening to me.

So back to the dual diagnosis program in South Carolina. NAMI, you can put your name on whatever you like. But I can tell who the “important people” are.

 

It’s the mother who created it.

30 Minute Life (The End is Not as Fun as the Start)

Last night I watched the Frontline/Hartford Courant piece “Raising Adam Lanza” on PBS. It was slightly less than 30 minutes in length, with the other half being taken up by “Newtown Divided,” about how the citizens of Newtown have divided over the issue of gun control.

 Link to Frontline “Raising Adam Lanza”http://www.pbs.org/wgbh/pages/frontline/raising-adam-lanza/

Link to Hartford Courant article “Raising Adam Lanza” http://www.courant.com/news/connecticut/newtown-sandy-hook-school-shooting/hc-raising-adam-lanza-20130217,0,5614292,full.story

At least I think that what’s the second part was about. I didn’t watch it. Frankly, I am tired of listening to the gun control debate. Or, rather, I am tired of the voices shouting to be heard over the din. The voice I really wanted to hear is a voice so quiet you have to put your ear to the ground, straining to hear any sound from inside the earth, desperate to hear something but knowing that whatever you hear is your own imagination.

 

I wanted to hear from Nancy Lanza.

 

Of course, she is dead and the dead can’t speak.

 

The piece started off with the number 26. 26 victims. President Obama read each one of their names.

 

Except there were 27 victims. Adam Lanza’s first victim, his mother Nancy, is left out.

 

This interests me. Why?

 

In 1999 in Littleton, Colorado, the students of Columbine raised 15 crosses. 13 for the victims and 2 for the shooters, set off to the side. Columbine High School acknowledged all the dead, even the two that killed the other 13. There is something deeply humanistic about that.

 

Oh, sure, I expect the media and the President to leave out Adam. But then I wonder, have they really looked at pictures of Adam Lanza? Because how can you look at pictures of him and imagine that same face, a face that looks overwhelmed by the world around him, wearing all black and battle gear, shoot his way into Sandy Hook Elementary and coldly unload on the staff, teachers, and children. Look up Seung-Hui Cho, the Virginia Tech shooter. Look at his darkly raging face in those photos he sent to NBC News the day he killed 32 people. Look up Eric Harris and Dylan Klebold. Look at the cold smiles. “Evil,” I would say, if I believed in evil. My point is that they made themselves look like killers. There is nothing of that in Lanza’s “deer in the headlights” gaze. It’s like one day he was a shy boy and the next day he was an inhuman killer.

 

There was absolutely nothing that the Courant reporters could find that could explain that transformation.

 

But Nancy Lanza was a straight-up victim, yet she is never included in the eulogies and memorials. Frankly, I expected more from the President of the United States. He’s a father. Is there no part of him that can empathize with Nancy Lanza?

 

Or, on some level, does he blame her, even subconsciously?

 

Let’s not kid ourselves here.

 

What did you ask yourself after Columbine? I tell you what I asked. “How could the parents have not known the boys were building pipe bombs in the garage? Surely, they must have known.” Given that the Harrises and Klebolds lived in big houses in an affluent Denver suburb and I was struggling to pay the bills at the time, I confess that socio-economic jealousy clouded my thinking. “Class warfare,” as Republicans like to call it. In this pre-Jani time, I was still angry over my own perceived slights from my father and others having been raised in a similar upper middle class neighborhood. “Of course they weren’t paying attention,” I said to myself at the time. “They were too busy keeping up with the Joneses, clinging to that upper middle class existence, to notice any pain in their sons.”

 

The arrogance of these statements really bother me now. How quick I was to judge. And I hadn’t even had children yet.

 

What did you say after Virginia Tech? It was a little bit harder to blame the parents because we know that his mother recognized he was “troubled.” But she turned to church. And I will be honest here. For me, there was a little bit of racism in my thinking then. I envisioned diminutive Korean parents, wailing and wringing their hands over their son’s actions, blaming it on “America,” wondering if they never should have left South Korea. I was condescending, thinking there was no way they could have understand mental illness.

 

What I find fascinating now is that I was projecting denial onto Seung-Hui Cho’s parents at exactly the same time I was deep in my own denial about Jani’s continuing behavioral change (she was three when Virginia Tech happened). I was as dismissive of their attempts to help their son as I was of those who suggested there might be something “wrong” with Jani.

 

By Tuscon (Jared Loughner), Aurora (James Holmes), and Newtown, I had seen what psychosis could do. I had seen how it could completely alter the personality of its victim in a matter of seconds, turning sweet into violent. By then, I had experienced my child being a threat to other children.

 

I guess that is what the President hasn’t experienced yet. I remember how protective I was of Jani when she was a baby, almost a bully in my defense of her from innocent but older children who were, like most four or five year olds, not yet in full control of their bodies. I remember glaring at mothers who wouldn’t call their punk five year old away from my precious little angel.

 

Come on, admit it, you parents of neuro-typical kids. How many of you have yelled at a kid that wasn’t your own?

 

And then, suddenly, you are on the other side of it. Other parents glare at you. They yell at your child. You hover over your child in social situations, ready at any second to swoop in AND PROTECT OTHER CHILDREN FROM YOUR CHILD.

 

And you feel those looks, those looks of “What kind of a parent are you? I wouldn’t let my child behave like that.”

 

I feel it because I never look them in the eye. I can’t. It’s not shame. I just can’t bear to see what I must have looked like at one time. So judgmental.

 

I guess President Obama has never had to protect other children from Malia and Sasha. He is lucky.

 

That is why I believe Nancy is left out of the death count. On some level, maybe not even consciously, people, even the President, blame her for what Adam did. On some level, you believe it is her fault. She took him target shooting at a gun range. She exposed him to firearms. She kept the weapons he used to kill the innocent children.

 

She, quite literally, put the guns in his hands.

 

I don’t own any firearms. I never would. I would not trust myself with them, let alone have them in a house with two mentally ill children. I keep the sharp knives high up on top of the kitchen cabinets that only I can reach. We have absolutely no glasses or glass cookware. All of our plates and cups are plastic. Even our butter knives are plastic (the good kind from Ikea). I keep the screwdrivers up high, beyond the reach of Jani and Bodhi. I even keep the fucking cleaning supplies on top of the refrigerator rather than under the sink.

 

So I wanted to understand Nancy Lanza. I wanted to understand the forgotten victim of the Sandy Hook Massacre. It wasn’t that I was looking to blame her. I expected to see clear evidence of mental instability that she willfully ignored, like I had done many years ago.

 

Except that is not what I saw.

 

What I saw shocked me, but not because of any mistakes.

 

What shocked me is that I understood everything she did. Because I have done everything she did.

 

Right from the beginning, she knew Adam was “different.” She brought a toddler Adam to his older brother Ryan’s Cub Scout activities. She would warn people not to touch Adam. No, not the “good touch, bad touch.” Literal touch. Adam hated being touched. He didn’t interact with other kids. He was lost in his own world.

 

Other than the touch thing, I might as well be describing Jani at that age.

 

By the time Adam was in kindergarten, he had an IEP (individualized education plan). IEPs are for kids who have issues that make it difficult to function in general education. Adam was diagnosed with “sensory integration disorder,” a diagnosis not completely accepted within the medical community (then again, neither is child-onset schizophrenia, although that is rapidly changing). I don’t know why he wasn’t diagnosed as autistic then. This was the mid-Nineties and we have to remember that autism wasn’t QUITE as widely known as it would become a decade later. Also, at that time the diagnostic criteria for autism was stricter than it is now. The prevalence of diagnosis today has a lot to with autism being classified as a “spectrum disorder,” eliminating the need for a child to have all the symptoms of classic autism (non-verbal, no eye contact, etc). Since Jani was diagnosed, schizophrenia has also moved toward a “spectrum,” as increasingly psychiatrists feel the determining factor of diagnosis is not the symptoms but how much those symptoms impair functioning. The DSM-V will reflect this new understanding of schizophrenia, eliminating the classic “sub-types” like “paranoid schizophrenia” in favor of a spectrum.

 

When the family moved to Newtown in 1999 and Adam was enrolled in a special ed class at Sandy Hook Elementary, Nancy sent an email to a friend back in New Hampshire, “I can’t write much tonight…I have to work on party invitations.

Ryan’s and Adam’s birthdays are coming up. It makes a very busy month! Ryan is having an “Old Friend” party and a “New Friend” party…Adam is having only a “New Friend” party…but he has 26 new friends!!! “

 

Of course those “26 new friends” were his new classmates at Sandy Hook Elementary.

 

I remember the “old friends” drifting away as Jani’s behavior got more unpredictable. There are still some “old friends” that get invited to Jani’s birthday parties but they are really our “old friends.” Since this academic year is Jani’s first back in a class since she became acutely psychotic in 1st grade (she’s in 5th now), for her 10th birthday we invited her entire class. All seven of them. The “new friends.”

 

But Adam continued to struggle, not with violence. Actually, there is no evidence he displayed ANY violent behavior prior to December 14th, 2012, the day he killed his mother and 26 people at Sandy Hook Elementary. The struggles seem to be with his lack of socialization and dealing with a large class (26 is huge for a special needs class).

 

Nancy considered pulling him out and placing him in a parochial school for the smaller class sizes. Instead, he remained in the Newtown District, but being given work to do at home and only coming to school to work with a teacher after the other children had gone.

 

God, that is familiar. That’s what we did with Jani for four years. Just her, a teacher, and an aide, one to two hours a day, in a classroom after the other kids had gone.

 

It is unclear how long that lasted but Adam was at Sandy Hook in the fifth grade to sign a class t-shirt.

 

Then came junior high.

 

I don’t mind telling you that junior high scares the shit out of me. First, it is a different school district where we live (numerous independent elementary districts and then one massive high school district). Jani’s current school district has for years bent over backwards to create a unique program for Jani. We have already been warned that the high school district will probably “not be able to offer the same level of individual care.” Right now, Jani is a big fish in a small pond, in a class of seven, in a school of 400, in a district of 7,000. In one more year, she will be a small fish in a giant ocean of 21,000 students. I already know that it will be like starting all over again. We will have to fight (again) with a new district to get Jani what she needs.

 

Everything that Jani has known for the last six years will end and she will start over new. And starting over new is traumatic for kids like Jani. It can send them sliding back.

 

It did for Adam. Nancy pulled him and put him into a parochial school but that didn’t work out so it was back to Newtown High School.

 

Nancy would get called to the school several times a week.

 

Yep. Been there, done that. I still feel my blood vessels constricting every time my cell phone rings and I see it is the school district’s main line. Like Susan and I with Jani and Bodhi, Nancy would sometimes go a month or more without a call. And sometimes it was several times a week.

 

We get called for violence or self-harm. Nancy was called because Adam would “shut down,” as it has been described by the former advisor to Newtown High’s technology club. He never completely came out of his shell but he seemed to make some progress, even if it was in fits and starts.

 

Then Nancy pulled him in his sophomore year.

 

We don’t know why. I know that anytime Susan and I have felt that Jani was getting too “overwhelmed,” we’ve pulled her or immediately called another IEP to change her educational environment. We know that stress makes her psychosis worse and every time Jani is doing well and the school starts to (innocently) push her to do more, she regresses. And even though logically I know they are trying to improve her functioning in the world, which requires slow exposure to stress to get used to it and learn how to work through it, our response to take away even the most minor stressors out of fear Jani will fall all the way back to the psychiatric hospital.

 

That combination of fear of regression and not wanting to see your child suffer is powerful. Was it the right thing to do? The former head of the technology club says no, because Adam lost the supports he had at Newtown High. It might have sped up what appeared to be almost total social isolation except for Nancy.

 

But then it becomes a matter of how much suffering are you willing to put your child through? Do you trust the “professionals?”

 

The New Hampshire friend told the Courant reporters, “There’s a lot of counseling help available and not all of it’s good… She was very particular about who she would bring him to….She often didn’t trust … the intentions of some counselors, maybe [thought] they didn’t really … know what they were doing, or they didn’t understand the situation enough to help.”

 

How many times did I write in January First or in my blogs about some professional seeing Jani who I felt didn’t understand psychosis, didn’t understand how to work with Jani, or they just “don’t get it?” I think this comes from the fact that as a parent you live with your child. You see everything. And them some outsider, even one with letters after their name, starts telling you how to parent? But they aren’t there. They don’t live it like you do. And so it becomes very easy to dismiss what they are saying, particularly if they seem fixed on a particular idea that you (the parent) should be doing or you don’t feel they are listening to you. This creates something that all parents of special needs kids deal with, especially those whose “special need” is completely understood: the “bunker mentality.” Everyone not with you, not living the life you live, is a potential enemy for the simple fact that they “don’t get it.” Even while you accept their help, you see them as obstructions, people to be tolerated so you can get some help.

 

It is, I admit, very dehumanizing. You divide the world into those who “understand” (meaning they live it) and those who don’t. You start making up excuses as to why a person can’t possibly understand. Eventually, you even draw distinctions between yourself and other parents of mentally ill kids. Anyone who is different, anyone who would not make the same decisions you would just doesn’t “get it.”

 

Unlike me, Nancy continued to socially interact on her own as Adam grew to maturity. She seems to have really fought against the “bunker mentality” in her own life but not with Adam.

 

We will never know if Nancy’s decision to turn her back on whatever services Newtown High offered was a mistake. Maybe from the perspective of the technology club advisor, they looked like great services but from Nancy’s perspective they didn’t. Maybe Adam regressed again and she blamed the environment of Newtown High. When the technology club advisor, feeling that Adam could be a target of bullying, called Nancy to find out how she gets him to interact, she told him he had been diagnosed with Asperger’s. She also told him that she felt his attempts to reach Adam wouldn’t work.

 

I know that feeling. I know the pessimism. You start to believe. Then you child regresses and you are bitterly disappointed. You can’t be disappointed in your child because you know he or she cannot help it. So your disappointment transfers to those who were trying to help.

 

And then people leave.

 

I can only imagine what she must have felt seeing Adam improve with the efforts of the technology club adviser only to discover he was retiring. I have felt that emotion when a doctor or therapist that Jani loved moves on. In fact, in the fall of 2010 I wrote several bitter blogs directed at a local agency for what I felt was them abandoning Jani (in their case, they were, because they suddenly didn’t feel she was getting any better even though we saw improvement).

 

It shatters what little trust you have left that anyone other than you is going to stand by your child until the end. You lose your faith in humanity. You stand by your child no matter what and you, perhaps unreasonably, expect everyone else to do the same.

 

And so all the groundwork had been laid for Adam to continue to withdraw. Nancy appears to have tried to live two lives, pretending to be happy and upbeat in public while worrying deeply about what would become of Adam.

 

The guns. Why in God’s name would she take him to a gun range?

 

I’ll answer that with another question that I have often read: Why in God’s name did you decide to have a second child when you knew Jani had schizophrenia?

 

Well, first, we didn’t know she had schizophrenia. We knew she had issues, but we assumed she would grow out of them. She wasn’t yet violent. But the main reason was Jani was depressed and withdrawing. She was losing her enjoyment of activities she once loved. It seemed like she felt the world had nothing left to offer her. At five years old.

 

I was desperate to give her a connection to this world. I wanted to see her smile again. I wanted to see the light in her eyes again. Nothing I tried worked. So I agreed to have another child (which Susan had wanted for awhile). In my internal fantasies, I thought a baby sibling would wake up her zest for life. I thought that what she needed was someone to teach as I had taught her everything I knew. I thought she would find joy from guiding her sibling as I had guided her.

 

Yes, I was wrong. But I can completely understand Nancy. She was desperate to bring Adam out of his shell. She was desperate to give him some joy in life. She was desperate to connect with him. And shooting could possibly do that, you can’t tell me you wouldn’t have done the same thing.

 

In the end, it might have been a mistake, but her heart was in the right place. Everything she did, she did for Adam.

 

As it turned out, Adam apparently lost interest in the gun range. ATF reports no record of them going to the range in the six months prior to the massacre.

 

Reports have been tossed around that she was looking into institutionalizing him.

 

Those reports are wrong (as is much of my first blog on the Sandy Hook shooting, “The Cycle Repeated”).

 

There is no evidence she was frightened of Adam. There is no evidence she was seeking to get him inpatient.

 

Perhaps where this confusion comes from is that she was preparing to move.

 

With Adam.

 

Where-ever he was going to go. She was still hoping he would finish college and was looking a different schools where he could study history.

 

It appears she had settled on Washington State. She sold her season passes to the Boston Red Sox (not a minor thing for a life-long Red Sox fan).

 

 

To friends and family, Nancy was again looking for the right educational fit for her now adult son — even if it meant leaving New England, where she had lived her entire life.

 

One family member believes Nancy would not have planned such a move without

Adam behind it.

 

When the family member asked Nancy why, she responded, “You never turn your back on your children,” the family member recounted.

 

She told Tambascio that she planned to continue living with Adam “for a very long time.”

 

“You never turn your back on your children….”

 

Sounds like a hell of a mother to me.

 

And she never did. She was sleeping in the early morning of the 14th when Adam Lanza went down to the guns, bypassing the weapons he would use a few hours later at Sandy Hook Elementary, choosing instead a .22 caliber rifle. She was sleeping as he shot her four times in the head at close range.

 

This was totally at odds with the carnage he would unleash on Sandy Hook Elementary. Four quick head shots. I confess I want to believe that he didn’t want her to suffer. That is my explanation for the four quick “taps” to the head. I have no proof of this but I just can’t bring myself to believe that he wanted her to feel pain. In her emails, she alludes to a life threatening auto-immune illness she had. Perhaps this was as close to an act of love as Adam Lanza could feel. Quick and painless.

 

From then on, we know nothing. Nothing about his motivation. Do I still believe Adam Lanza was psychotic? On that day, yes. I believe a switch flipped in him. Something in his thought process went terribly, terribly wrong because there is no logical reason for what he did, nor is there anything that we know in his history to indicate that he would.

 

And I suppose that is where I come to after four blogs on this topic. In the beginning, I was absolutely convinced that Sandy Hook was a clear case of the “system” failing to identify the warning signs of a psychotic break.

 

Except there weren’t any warning signs. There was no denial on the part of Nancy Lanza. There was no failure on the part of the system. Adam didn’t fall through the cracks.

 

Or if he did, we don’t know how we could have prevented it.

 

At the end, all we have is that something when horribly wrong with Adam Lanza’s thought process. And any hope of being able to understand it, and therefore prevent it from happening again, was destroyed when Adam put a bullet through his brain, ending all thought processes.

 

Adam Lanza’s father and brother? They’re not talking. I wish they would. There is nobody left to blame here, people. We just need to try and understand.

 

Was Adam Lanza under the care of a doctor or psychiatrist? We don’t know. Were Lanza’s “incidents” at school more severe than the technology club teacher knew or let on? We don’t know. Reporters only know what people tell them. Sandy Hook Elementary, which would still have Adam’s records, Newtown High, and any doctors he saw, even a pediatrician, aren’t talking. It’s not a HIPAA issue. HIPAA protection ends with your death. But whatever else there might be in Adam Lanza’s history, we will never know unless those who knew him come forward.

 

I hope they do.

 

Based on what I know, I cannot see where Nancy or the world failed Adam. And that terrifies me. Because Nancy tried everything and was willing to keep trying.

 

Only she never got the chance.

 

If she can fail, any of us can fail. If Adam can become a killer, any of our children can become a killer.

 

So what is the answer?

 

The only thing I know for sure is that Adam was isolated. Self-imposed isolation, but that is what mental illness does.

 

Jani still interacts with the world, even if the things she says are a bit “off.” And that, I think, I hope, will make all the difference.

 

I don’t know that we will ever be able to stop every massacre like Newtown (unless we ban semi-automatic weapons like they have in the UK). After all, Eric Harris and Dylan Klebold went to prom three days before Columbine.

 

But if we focus on socialization over isolation, we might save some lives.

 

And if nothing else, at least we might need more than 30 minutes to tell the story of a life.

 

Link to “Nancy Lanza: In Her Own Words” http://www.pbs.org/wgbh/pages/frontline/social-issues/raising-adam-lanza/nancy-lanza-in-her-own-words/

 

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I Am an Asshole (Cool and Cold)

I am an asshole.

 

This is a fairly common assessment of me by readers of January First over on the book’s thread on Goodreads.com. They like the book. They are unable to stop reading it. They keep going to the end, sometimes in the hope that I will acknowledge I’m an asshole and seek some kind of redemption, although I am not sure what sort of redemption I am supposed to seek. It doesn’t really matter, though. I am not looking for redemption. I didn’t write the book to be liked.

 

No, it’s not that the fact that some readers of either the book, this blog, or our Facebook page think I’m an asshole that surprises me.

 

It’s that they thought I wouldn’t be. That is what surprises me the most. That they can read everything that happened in January First and expect me to come out of that “nice.”

 

Am I missing something here?

 

Now, full disclosure: I probably had moments of “assholeness” before. The time before Jani and her illness is a distant memory but I certainly wasn’t perfect. I think without Jani I probably never would have gotten on medication myself. To the people who speculate that I am mentally ill myself…well, duh! No, I was a perfectly rounded human being before Jani. No, I have always had a more minor mental illness, which when diagnosed goes by the term chronic depression or bipolar 2 (no manic state) but it is better known by it’s common term That guy is an asshole. In females, it is known as That woman is a crazy bitch!

 

I am honestly not criticizing my readers here.  I don’t shy away from my reputation as an asshole. I am just genuinely wondering what they were expecting?

 

Since I didn’t have the chance for much self-reflection in the book (there is such a thing as contractual length), I am doing it now.

 

Well, right off the bat I can tell you part of the problem is that it is not over. Books have to end. Life does not. It’s hard to reflect on something when you are still in it. Reflection is a luxury that comes with being safe and sound. First you have to feel safe and sound. I don’t.

 

Yes, I probably could have waited to write the book until I had to narrate it from my death bed. Or, as some have suggested, at least wait until Jani was grown and could give her “blessing.”

 

I didn’t because that might have changed the ending… the most important aspect of the book and the one that is so easily lost.

 

The book ended with Jani alive.

 

She is still alive.

 

By writing it, I did not guarantee that she would stay that way but I took a meaningful step. I entered her into the canon of public consciousness. From now on, no matter what happens, she is part of the Library of Congress, the collective consciousness of the United States of America. I have increased the odds that when asshole me is dead and gone, there will be people who will remember her and help her.

 

Because Jani still clings to functioning by her fingertips. Those who expect Jani to one day be angry at me for “outing” her to the world may turn out to be right. But first Jani needs to learn to take a shower by herself.

 

You know, the little necessities of life that have to be taken care of before someone can sit and brood over their parents’ actions.

 

It seems like a little thing. Taking a shower. Most of you probably do it every morning without thinking about it. Why? Oh, sure, you’re afraid of somebody sniffing the air while you’re in an elevator and looking in your direction. Of course, that requires social awareness, being aware of the presence of other people around you and that you have to live and work side by side with them. Thank God for deodorant, Dentyne, breath mints, and Binaca. Stores are filled with ways to conceal the normal functioning of our body throughout the day.

 

If you are not socially aware of what other people think of you, how would you know that you needed to clean yourself?

 

But that’s not the only reason you take a shower. Think about the days when you don’t have to go out of your home. Let me ask you this. How long can you go without a shower, even when you don’t have to go out in public?

 

One day. Two days?

 

There is a limit, isn’t there? You know when it is. When you get up from lying down and your skin peels off the bedsheets like Velcro. When it feels like there is a layer of film on your skin. When you start to twitch from hating the feel of your own skin. When you can smell yourself.

 

How long can you go without brushing your teeth? Our dentist said that when he was in dental school, the students had to go one entire month without brushing their teeth, for the purpose of taking a sample of plaque off the teeth for culture. Can you imagine that? An entire month without brushing your teeth? How long does it take before your mouth feels like its lined with cotton?

 

In the end, it ain’t just social decorum that makes you take a shower or brush your teeth or wipe yourself after going to the bathroom. In the end, you can’t stand the way you feel if you don’t. You have to shower. You are compelled. The power of Irish Spring compels you.

 

But what if you don’t have that compulsion? What if you are disconnected from how your body feels so you never get that “skuzzy” feeling? Or “skeevy” as I think the kids say now, as in “Michael Schofield gives me this skeevy feeling like he is exploiting his daughter….” by wish I assume you are saying I give you a feeling like you need to take a shower. Good for you. Your brain is functioning relatively normally.

 

You know what happens if we tell Jani to take a shower?

 

She’ll turn on the water. And just stand there, looking blankly up at the shower head.

 

If I say “Wash your hair,” she will get the shampoo bottle, open it, pour some into her hand, and then slap in on her scalp.

 

So?

 

She’s hasn’t gotten her hair wet yet.

 

Okay, start again.

 

“Jani, wet your hair.” This is followed by innumerable commands of “keep going” because initially she just turns around and moves back into the water stream enough to wet the tips at the end. If she were Bodhi with his short, straight hair, this would be sufficient, but you know Jani’s hair. Everybody loves Jani’s hair.

 

Next, it is “Get the shampoo.” She does, like I described before, and slaps it on her scalp.

 

“Massage it in,” I have to tell her, followed by more “keep going, keep going, keep going….”

 

“Now the conditioner…..Eighty got a cat?….Mix it into your hair….. Eighty’s cat’s name is Seventy-Five?….. Keep going, keep going, keep going….We have to take care of Seventy-Five?…. Keep going…Where is Eighty going?…..Eighty has to go to Bakersfield, I see….Keep going… Yes, I know, we have to take care of Seventy-Five…

 

I will take a thick brush and gently attempt to brush out the tangles. While I do this I talk a blue streak about whatever she thinks her hallucinations are doing because if she screams, if she thinks I am “doing it too hard!” she will take the brush from me and rip it through her curls, pulling out huge clumps of hair without a whimper, which frankly scares the shit out of me.

 

I get a washcloth and wet it, because she will not remember to wet it before I say “Wash your face.” “Washing her face” for her means washing her chin. I suppose I could say “Wash your mouth. Wash your cheeks. Wash your nose. Wash your forehead,” but time is a moving here and we still have a long way to go so I end up taking the washcloth and doing a quick onceover her face.

 

Next, I rub soap into the wash cloth and say “Take the wash cloth.” I won’t wash her body. I haven’t in years. First, it was because after the DCFS investigation for sexual abuse, I didn’t want to take the change. Now it’s because she is ten and a half years old and I shouldn’t even be in the fucking bathroom any more.

 

I have to repeat my command to take the wash cloth several times, either because she is talking about her hallucinations or because she is busy putting her hand up her bottom to make sure she isn’t having a bowel movement.

 

Finally, she takes it.

 

“Wash Amy the arm.” “Amy” is her left arm. The only way I could get her to wash herself was to name her body parts. All of them. “Now wash Annie the arm.”

 

“Now, Sally the shoulder… and Sharon the shoulder.”

 

“Ursula the underarm.” Now that she is on the verge of puberty I make her wash her underarms. It took me forever to think of another female name starting with “U.” “Now, Uma the underarm.”

 

“Now, Chelsea the chest….Becky the belly. Now, Lisa the leg. No, get all of Lisa. You have to do the inner thigh.” She pauses because she can’t remember what the inner thigh is. I try to point to it without touching it but she thinks I am pointing to the outer thigh of “Leslie the leg.” “No, inner thigh. Inner thigh. The inner thigh.” I don’t know how many times I say this. She is just draping the wash cloth over her legs but I figure the soap runs down so the calves will get clean anyway.

 

“Don’t forget about Gina and Tina.”

 

“Gina.” Short for “vagina.” And “Tina the tush.” She spends more time with the washcloth up her butt that anything else.

 

“Okay, now rinse off.” She drops the washcloth. I have to tell her to turn around several times until all the soap is off.

 

“Okay, you can turn off the shower.”

 

She does. Then she screams “I’M WET!!!” at the top of her lungs, as if she just realized. I hand her a towel. She spends several minutes with the towel up her bottom and then attempts to get dressed with the rest of her body still soaking wet.

 

“Remember how I taught you to dry your legs?” I ask. “Wrap the towel around each leg individually and then move down.”

 

Sometimes she does. Sometimes she continues to scream that she’s wet while drying her bottom to the humidity of the Sahara.

 

Sound creepy? Are you creeped out? Does that make you feel “skeevy?” Good. It’s supposed to.

 

By the way, it’s the same process for Susan and Jani’s ABA behaviorist, who comes on certain mornings exactly for this purpose.

 

So am I worried about what Jani is going to think and feel when she is twenty years old?

 

No, I am worried about Jani being able to THINK and FEEL at twenty years old.

 

I am worried about her being able to take care of her basic hygiene.

 

The loss of hygienic awareness is what is called a “negative symptom” of schizophrenia. The hallucinations and the aggression? Those are called “positive symptoms” and they are easier to treat, provided the person suffering from schizophrenia takes his/her medication. “Negative symptoms” are the things that most of have or take for granted but those with schizophrenia do not.

 

And both positive and negative symptoms can kill.

 

Because the negative symptom of lack of awareness of hygiene is the first step to homelessness (or the appearance of it, like the guy in New York City the nice cop bought a pair of sneakers for). And homelessness ends in one of two places: prison or death.

 

Our only hope is to try and lock the process of bathing, body part by body part, into Jani’s mind so it becomes a repeating loop for her.

 

I find the saying “Cleanliness is next to Godliness” depressing. It feels like it is putting the severely mentally ill further and further away from God’s Grace.

 

I have to worry about Jani being able to do the basic requirements of human survival. And you wonder why I’m asshole?

 

While you sit in judgment of how the future will look back on me, I am still trying to ensure Jani is a part of that future. Because in the end I am a mammalian parent. And I do what all mammalian parents do when they feel cornered: lash out. Lash out whether you deserve it or not. It gets to the point where you don’t trust anyone anymore. The parents of the severely mentally ill will die for our children. And we see nothing out there, in your society, that makes us feel anybody else will.

 

You imprison our children. You hit them with stun guns. You pass them on the street. You beat them to death.

 

Why in God’s name would we trust you?

 

Some of us are just better at hiding it than others. Because we know we need you. And we all know our anger turns you off. You are fine with our pain. You sympathize with that. But our anger? No, that makes you turn away.

 

But so many of you turn away anyway. You see a cute girl on TV. You “like” a Facebook page. Then you move on.

 

For most of you, the seed I, and the other parents like me, have tried to plant in your mind will not germinate.

 

But for a select few of you. It will. It will and it will grow despite the aspects of us that you don’t like.

 

I am sorry that I don’t trust you. It will take me a lifetime to trust society again. Not because you are bad people. Not even because you weren’t there. No book in the world can ever truly give you the experience of what loving a severely mentally ill child is like. No, I can’t trust you exactly because of that. You cannot feel what I feel. It’s not the life that I hate. There is no pity here. But there is pain.

 

But you can’t function in pain. You have to get angry or you can’t get out of bed in the morning. And if you can’t get out of bed in the morning, severely mentally ill children will die. Today might be the day that everything unravels. All your victories are temporary. All your failures feel permanent.

 

My greatest failure is not that I can’t make you understand. That is only a shadow of my true failure, which is that I can’t fully understand what Jani experiences. But perhaps if I could, I would be no use to her. I try to tell myself that.

 

So that brings us to a catch-22, doesn’t it? In order to insure the survival and happiness of Jani and the countless children like her, I can’t do it alone. I need you. But the very nature of this experience is lonely. I can’t make you feel it. And so I get angry. And that potentially drives you away.

 

I don’t know how to solve this. I cannot be someone I am not. Neither can you.

 

But maybe, just maybe, in the midst of my anger and your confusion, we can remember that there are children here we need to save.

 

And we can save them.

 

We all need to be saved. We all need redemption.

 

And when severe mental illness does not kill anymore, when it does not destroy lives, that will be our redemption.

 

NOTE: This could very well be the last blog published here. Jani’s Journey will be moving to www.janifoundation.org soon. The Jani Foundation was incorporated in the State of California on December 17th, 2012 (Bodhi’s birthday) and 5o1c3 status is pending.

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Days of Infamy (Guarding the Gates)

Two blogs before this one, “The Cycle Repeated (Burn It Down),” achieved more hits in the 24-hour period after publication than any blog I’ve written before. Of course, that blog was written the night following the Sandy Hook Massacre, so perhaps that is why. The follow up, “Open Letter to the President of the United States Regarding Mental Health Reform,” has been published for a week and hasn’t hit even a quarter of the hits of the previous blog.

 

I’ve been trying to figure out why because the “why” is important. It is important because I knew from December 14th onwards that we only had a small window here. Our chance to get the message out that such tragedies were caused by mental illness and could be prevented by PREVENTATIVE mental health was now, because the nation was looking for answers as it always does after a mass shooting. But despite optimism from the gun-control advocates that perhaps Sandy Hook was a “tipping point,” I knew that, even though our focus was not gun control but what motivates the pulling of the trigger, the chance to push mental health into the public consciousness would only last until the last national news truck left Newtown. I figured we had one week, to approximately the 21st or 22nd, or, to put it bluntly, when the funerals were over.

 

There are few days that will “live in infamy” anymore, to quote FDR. The 24-hour news channels, with their need to fill endless minutes of every day, do not have the luxury of letting infamy set in for awhile. Other stories were on the horizon: the possible end of the world at the winter solstice, the “fiscal cliff,” Christmas, how the retail market did during the Holidays, Syria. No, I knew that in America, days of infamy are only for individuals. December 14th is a day which will live in infamy for the families of 28 dead people.  For everyone else, there will come a time when December 14th no longer means anything to you. Does July 20th mean anything to you? January 8th? April 16th? April 20th?

 

If I wasn’t talking about mass shootings, would those dates mean anything to you? (In order, July 20th, 2012-James Holmes kills 12 inside an Aurora, Colorado movie theater; January 8th, 2011-Jared Loughner kills six people and wounds then Congresswoman Gabby Giffords; April 16th, 2007, Seung-Hui Cho kills 32 people at Virginia Tech; April 20th, 1999, Eric Harris and Dylan Klebold kill 13 at Columbine High School). If you didn’t, don’t feel bad. I had to look up the dates and even the number of dead in each case.

 

And those are just the “biggies.” There were other school shootings in the 90s and 2000s that I can’t even remember because, sadly, the death toll wasn’t as high.

 

There are only two “days of infamy” in the last one hundred years in the United States: December 7th, 1941 at Pearl Harbor, Hawaii (2,402 Americans killed) and September 11th, 2001 (2,977 killed, not including the 19 hijackers). Those are the only two days of infamy that brought immediate action from the US Government with the support of the American people. The cynic in me says, “Well, obviously double digit death tolls are not enough. Clearly, nothing is going to change until somebody with untreated severe mental illness figures out a way to kill 3,000 people in one go.” Lucky for you, there isn’t a semi-automatic rifle magazine big enough to do that. Hell, not even a tank would do that. If the entire NRA membership went off their rockers, they couldn’t even do that.

 

Except that I’m not really a cynic. But it’s getting harder. I didn’t sign the “National Sandy Hook Sympathy Card” that almost everyone I knew posted to my Facebook page. I didn’t see the point. The longer a war goes on, the harder it gets to cry for the dead, which bothers me. It really does. It really bothers me that I am incapable of shedding a tear for Adam Lanza’s victims. I am probably the one person who is ever going to admit to it, so that is something I have to own alone. I can’t feel for them. I should be able to feel for them. I am a parent and if somebody killed my children I…. there are no words to describe how I would feel.

 

…Except that somebody is killing my children.

 

Notice I did not say “something.”

 

Schizophrenia itself is like a siege army. It slowly encircles the city of your mind and then, in blitzkrieg attack, it rushes in to lay waste to your personality. It’s primary weapon of siege is thought disorder, making you belief that things that are false are true and vice versa. Like my Barbarian ancestors who sacked Rome, it will sometimes pull back for awhile, after raping and pillaging your consciousness, only to come back again, destroying the mind, the person you love, over and over again until, like Rome, the person is dead, usually through suicide but also by cop, by prison, or by the streets themselves. It’s just that unlike Rome, nobody replaces the person you have lost. No new empire rises from their ashes. They are just ashes.

 

In human history, only two things have turned back a siege: Weather (act of God) or reinforcements.

 

We cannot rely on an act of God. Why? Because God has already sent his/her/its angels. The angels are you. I’ve told you that before.

 

And you are the reinforcements.

 

I read every comment that comes to this blog and I publish all of them (save those who double or triple post because the site gives you no acknowledgement that your comment has been accepted for moderation). Although they are a minority, I am always surprised by those who are surprised by my “bitterness” and “anger.” I mean, I get it to a point. A few, I think, just don’t have the stomach for the life of “surviving schizohrenia,” to quote the title of E. Fuller Torrey’s book. This category also produces the same people who commend Susan and I for what we have done for Jani and say things like, “I don’t know how you do it,” which has a very simple answer: because we have to. Whether readers think we have a choice or not, in our mind we do not. Jani is our daughter. We brought her into this world. It is our responsibility to ensure her survival until the day we die.

 

Mental illness is ugly. It is not beautiful. There is no beauty in it. What you see as beautiful is Jani herself. You were not there to see the disease of schizophrenia and what it did to her. I did my best to relate that in my book but even my relation is ugly. I get a chuckle out of reader reviews that like the book but think I am an asshole. I laugh because of course I am an asshole. I was probably a bit of an asshole before but what the fuck do you think happens to parents who watch severe mental illness take their child? We become even bigger assholes. It’s a survival mechanism. What? You expected me to be NICE to people while I was watching schizophrenia erode my daughter in front of me? Would you be nice if your child was dying? If you would, or have been, either you are sociopathic or severely, severely repressed. Becoming an asshole and lashing out at the world when you are losing your child and from your perspective everyone around you is standing there with their thumb up their asses is a defense mechanism. It becomes the only way you can fight. It becomes the only way to resist despair. Anger motivates you to keep going. Despair motivates nothing.

 

“What about ‘hope’?” you say. Let me tell you something about hope. Hope is only a powerful weapon in Hollywood movies. In real life, despair beats hope every time, unless you are a person lucky enough to have absolute blind faith in the Creator.

 

Hope is pretty to listen to. It’s comforting to others outside the situation. But when you are in it, living it, hope doesn’t give you the energy that anger will. Because in your darkest moments, and when you have a child with severe mental illness there will be a lot of dark moments, hope will FAIL. But anger never fails. Anger will keep you going in those moments when hope fails. Only anger will keep you trying to do the impossible. Only anger will keep you going to the ends of the earth. Only anger will make you a true advocate.

 

“Advocate” is a word that is tossed around so much in our society that it has lost all meaning. Partly this is the natural etymology of the word, derived from the same origin as “advice” or the verb “advise.” Lawyers are “advocates.” So are “educational advocates.” They give advice. They advise you.

 

But for me, a true advocate is not an advocate because they make a living off their advocacy (check the president/CEO of any non-profit you care to think of). They are not the teachers and the doctors (although they can certainly be allies and in our case, they are).

 

A true advocate is an advocate because if they don’t advocate, they will die.

 

A true advocate advocates because the loss is the greatest fear they have.

 

In other words, a true advocate is a soldier.

We are fighting back against the siege of our children’s minds. We are watching the walls, ready at any moment lest the enemy cross the moat and invade the city (me). Others are in the streets, literally in hand to hand combat against the schizophrenia that has completely taken their child (not me now, but I’ve been there). And when I say “hand to hand combat,” that’s not a metaphor. I really mean it. I know mothers and fathers who get the shit beat of them by their children during psychotic rages. I mean “broken jaw” rages. Ever taken a head-butt from your child to your face? Ever had your nose smashed? Ever had your forehead turn purple from broken capillaries? Ever had your eyes swelling out of your head?

 

I haven’t either. You think Jani’s violence was bad? It was one chapter in the book for a reason. I walked away with some scratches and bruises and, sometimes, a really bad headache.

 

I have met the sweetest kids, including “Cameron” in the book who saved Jani’s life. But I have also seen his father’s face after Cameron snapped. I’ve seen little Briana, Jani’s friend from “Born Schizophrenic: Jani’s Next Chapter,” playing with Jani and her turtles, the image of childhood innocence. And I’ve also seen her mother not be able to eat solid food because she can’t get her jaw all the way open.

 

And that’s not even counting what these kids do to themselves. In a state of psychosis, they feel no pain. They can pile-drive their heads into the wall until they leave a dent. They can cut themselves. They can shove a sharp object in their own ears and perforate the eardrum. They can try to jump off the balcony or roof.

 

And it is in the attempt to stop them from hurting themselves that we parents mostly get hurt. We take their blows because better the mental illness vents upon us, the guardians of the gates, than our children.

 

Actually, statistically, the person or persons most likely to die at the hands of a violently mentally ill person are their own parents. After self-inflicted violence, the parents are the most likely targets. Nancy Lanza was Adam’s first victim. In most cases, she would have been his only victim. Kip Kinkle killed his parents first.

 

I have no doubt that the surviving families of these mass shooters would trade their lives In a heartbeat. You don’t think Sue Klebold wishes she could? She said something rather profound. She said that initially after Columbine she wished she’d never gotten pregnant with Dylan because then he would not have been alive to do what he did. But over time she came to realize that to wish that Dylan had never existed was to wish away all the good things he did, all the wonderful things about him before he turned. Dylan killed 13 people, and there is no excusing that. But he also helped many more. It’s not that they cancel each other out. They exist side by side. Dylan Klebold the boy exists side by side in Sue’s memory with Dylan Klebold the mass killer.

 

The siege of mental illness makes it hard for those on the outside to distinguish between the two. But we parents can see it. Even though Jani is not dead, there are still two Janis for me: the one before and the one now.

 

And I think that is actually what those surprised by my anger don’t understand: how can I be so angry still when Jani has come back? Jani has a future now, they think. And it is that hope for the future that turns them off, and probably turned off readers of my last blog, the open letter to President Obama, because I equated such a cute, precious little girl to a mass killer. You don’t want to see Jani as a killer. I don’t blame you. So why do I persist in making the connection between Jani, who is relatively non-violent now, and killers like Adam Lanza and James Holmes?

 

Because, like I told you, you are the reinforcements. And because of that I need you to see the connection between adorable little girl and these killers. I need you to understand that they were adorable little boys once. They would have thought they had a bright future, too. You would have had no idea of what they were capable of.

 

I get criticized by mainstream mental health advocates because they are afraid the only connection in your mind is mental illness=violence. And it makes them afraid of what you will do to them. Hence the primary divide in mainstream mental health advocacy (I don’t consider “survivor” groups to be mainstream-most are Scientology fronts), between the adult, independent, and FUNCTIONAL “consumer model” and the parent-centered “patient model” (not to be confused with the “recovery model,” which is psych-analytic based, and the “medical model,” which focuses on the biological causes of mental illness and is the accepted model by the AMA). Adults with mental illness have defriended me, fearing that my rhetoric will lead to jack-booted thugs coming to drag them away because they are mentally ill and therefore “potentially violent” (this is also the “stigma” crowd). They don’t actually say they fear jack-booted thugs but that is what they fear. Or a lynch-mob. They are afraid that your fear of violence from the mentally ill will drive you to round them up and either institutionalize them or kill them.

 

For us parents of severely mentally ill children, that is not our fear. Our fear, our only fear, is our children dying from the disease inside their heads. And we are more afraid of your inaction than we are afraid of your action. Historically, you (meaning society) hasn’t done much about mental illness. It’s not your fault. Human nature blinds us to anything that is not right in front of us. “Out of sight, out of mind,” as they say. The severely mentally ill used to be locked up in state institutions. Now they are not. Would I have sent Jani to state psychiatric hospital permanently if such an option were still available? No, but only for my own selfish reasons of wanting my child around. But de-institutionalization has left Jani at the mercy of whatever Blue Shield will pay for, whatever county services are available, and, after she turns 18, nothing at all.

 

De-institutionalization failed for two reasons: One, it took away the only places that existed to get long term stabilization. Two, it took away a place for the most severely mentally ill adults who either cannot function or are non-compliant with medication. Where once a mentally ill person who committed a petty crime might have gone to a state hospital, now they go to prison. De-institutionalization directly led to the criminalization of the mentally ill… and Virginia Tech, Tucson, Aurora, and Newtown. Society took away the only place the severely mentally ill could go to get long term help. And now we are paying for it in blood, both theirs and ours.

 

In the long run, I care about the civil rights of the mentally ill. In the long run, I want society to accept them and treat them as we treat kids with leukemia. In the long run, I want telethons and benefit concerts.

 

But in the short term, I only care about keeping Jani and kids like her alive. Giving a person in the spring of their lives the right to kill themselves is not civil rights. That is an abomination.

 

I am a soldier in a war against mental illness. I would love to have you but only if you are in this for life. I can’t have fellow soldiers who get squeamish at our proposals. I am trying to save lives. Jani has a future, you say? How do you know that? I’m not going to wait around and see what happens in eight years. I can’t. I cannot bear her outliving me. And if that fear of her suffering or dying makes me into an asshole, then so be it. I don’t need you to approve of my methods. Either join me or get the fuck out of my way. Because I am not interested in debates over word choices. I am not interested in semantics. I am not interested in intellectual masturbation. My only goal is to keep Jani and as many kids with severe mental illness alive as I can.

 

I am not interested in your fears, society. I am not afraid of what you will do. I am afraid of what you won’t do. I am afraid of your apathy.

 

Whatever your hopes for Janis future, apathy won’t lead to any of them.

 

What are my hopes for Jani?

 

I just want her alive. I just want to make sure that in 10, 20, however many years I have left, I can still hold her in my arms.

 

And I empathize with other parents who want that. Because I would also like Jani to have friends and to do that we need to keep her current and future friends alive.

 

So, yeah, if it takes my getting in your face to make that happen, I am going to get in your face. I am not going to be nice. I am not going to be inviting.

 

Because the enemy is always at the gates. All I have time for is whether you will fight.

 

If you will, great. Get out there are start pushing for assisted outpatient therapy. Support funding for “assertive community treatment,” which gets mental health care out of offices and into the lives of those suffering from severe mental illness. Support involuntary treatment as determined by a panel of psychiatrists. Support medication. Support forced medication if necessary.

 

And if you won’t or can’t….

 

….then hide yourself and pray you don’t get hit.

 

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