Month: March 2013

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.