Month: April 2013

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?