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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.

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