Month: September 2012

Can’t Lose One (We Love You More Than You Know)

I know the expressed purpose of this blog is to update you on Jani and Bodhi and us as a family. And I am fully aware that rarely do my recent blogs deal directly with Jani. Part of this is self-defense (see blogs “Miranda” and “Miranda Part 2” for explanation). Part of it I don’t necessarily have anything significant to report (for those of you who blog or are thinking about blogging-never let your blog become a daily record of every event in you day-it’s boring). But mostly it is because this was never just about Jani or Bodhi or Susan or me.

 

It’s about the other children and other families you’ve never heard of because they’ve never been on TV or gotten a book published.

 

Our publicity is pointless if it does not serve as a vehicle through which we can bring attention to the plight of others.

 

Let’s face something here. You only know about Jani because of three events, all of which occurred by what could be considered a twist of fate.

 

First: On November 19th, 2001, I planning on meeting a friend I knew from school at the restaurant he worked at as a bartender. We shared a common interest in screenwriting (at that time, still my career goal). Susan was worried about me going to a bar. I haven’t had a drink since I was sixteen because it didn’t do me any good back then. I am the infamous “dry drunk.” I don’t trust myself. I don’t trust myself to stop with one drink. So I don’t. I did not plan to drink that night. I’ve been around alcohol and been able to refrain before so I found Susan’s concerns baseless that afternoon. I just wanted to go hang out with a buddy.

 

Susan convinced me to stay the only way women can convince men (particularly 25 year olds like I was then) to do anything. I checked the bathroom drawer and we were out of condoms. “Don’t worry,” Susan says to me. “We’ve done it before and I never get pregnant.”

 

There’s a first time for everything.

 

Afterwards, Susan felt what she describes as a “click” in her uterus, like it was locking down, but chalked it up to gas.

 

It wasn’t gas, of course. It was Jani. And the rest, as they say, is history.

 

Jani might have come later, you might say. Maybe. But I was stalling on having kids. It wasn’t that I expressly didn’t want kids. It was that I was 25 and still waiting for my “ship to come in.” I hadn’t finished college, had no job, and was pursuing my “dream.” I had no means of supporting a child and my father had drilled it into my head that I shouldn’t have children until I was “established” (which I equated as having, get this, one million dollars, or the approximate cost of raising a child from birth through college). The idea of having a child was terrifying to me. How long would I have put Susan off? For her, having children was a “dealbreaker” in our marriage. What scares me is when I wonder if I would have been willing to break that deal had the Universe not taken care of it for me? I am not sure I could have been trusted to bring Jani into this world willingly (all this was in the early drafts of the book but deleted for length purposes). So Susan and the Universe and my own libido took it out of my hands.

 

Second: In 2009, during the worst of Jani’s psychosis, Susan was sharing what we were going through with a former co-worker named Stacey Cohen. Stacey was incredibly moved and, without our knowledge, happened to know Shari Roan, the then heath reporter for the LA Times. Shari contacted us and followed our lives for about three months. We agreed to the story because at the time I was constantly fighting our insurance company, Blue Shield, for further hospital days for Jani. Our hope was that the publicity would get Blue Shield to back off and let UCLA treat Jani. What was I supposed to do when Blue Shield kept sending me letters saying they were denying authorization for further inpatient days because “the patient has shown no improvement within a reasonable amount of time and/or there is NO HOPE of improvement.” Yep, that is what insurance companies do to the mentally ill. If you don’t get better within a few days (bad insurance) to two weeks (great insurance), they simply deny authorization for further payment to the provider (hospital). Do they do that to kids with cancer? I don’t know. Maybe.

 

Yes, I used the LA Times as a weapon against Blue Shield. I thought that if the public found out about how Blue Shield kept trying to deny care to Jani because they didn’t feel she was getting better fast enough for their bottom line, it might make them back off for a little while (and it did-for a little while).

 

But it was that article that led to Oprah, 20/20, Discovery Health, and eventually the book deal.

 

So you know about Jani because I was fighting an insurance company and because of Stacey Cohen and Shari Roan.

 

Third: The aspect of our story that really got attention was not that Jani had child-onset schizophrenia. It was what we did to keep her with us instead of sending her away to out of state residential. What everyone in the media was fascinated by was that we traded in our two bedroom apartment for two one bedroom apartments, one for each child. They were fascinated that Susan and I would actually physically split up in order to hold our family together.

 

How we came to that decision is in the book. If you’ve read it, you know that was Susan’s idea, which she feels she got from God.

 

My family would not be intact if not for Susan. My idea was lousy (you have to read the book). Her’s was so far outside of the box I never could have come up with it. Some readers have criticized my portrayal of Susan in the book, apparently not realizing that I wrote it in present tense and therefore it reflects my feelings AT THAT TIME. THEN I thought Susan was weak, which was really my own weakness and fear projected onto her. That is what married couples do. In times of stress, you turn on each other. It’s not right, but we always attack those closest to us.

 

If you want to know how I feel about Susan now, read “Stay Together for the Kids.” And for the small minority of single women who criticize me for putting my child before my marriage, Susan would have done (and did do) the same thing. Only those who don’t yet have kids would understand that. You always put your kids first, no matter what it costs you. Why do those people think the book is called January First?

 

So you know about Jani because of Susan’s divine intervention. Because at the end of the day, it was the two apartments that made our story stand out from others.

 

Jani is not the only child to be diagnosed with schizophrenia. Not even close.

 

But I didn’t know that until other families with severely mentally ill children saw our story and contacted us.

 

It started with a trickle. In between the emails expressing support and the emails offering snake oil cures were emails from other families.

 

After Oprah, that trickle began a torrent that still runs today, three years later. A torrent of families who were going over the edge of the abyss until they saw us. And they went on the internet and found us and emailed us. Some have sons and some have daughters. Some have schizophrenia and some have bipolar. Some have no diagnosis at all (yet) even though they have been psychiatric hospitals. Some are young children. Some are teenagers. Some, their children have grown into happy adults. Some, their children never made it.

 

But regardless of the diagnosis, symptoms, or situation, they all say essentially the same thing: we thought we were alone.

 

And for all of them, the “system” was failing their children.

 

Because it didn’t exist. There have always been kids like Jani. It’s just that forty years ago they spent their lives in institutions. Those institutions have progressively been closed (to my knowledge, there are no long term public hospitals for the mentally ill left anywhere in America). As the previous generation of mentally ill was turned out onto the streets, becoming either homeless or winding up in jail (or usually going in and out of both like a revolving door) a new generation was arriving only to discover that the social services for the mentally ill, as flawed as they might have been in the past, no longer existed at all.

 

But nobody under fifty remembers the state hospitals for the “insane.” And those few left alive who do remember them do not remember kids like Jani because they weren’t around the neighborhood in 1962. They were on the back ward of Camarillo State Hospital (now California State University Channel Islands, serving the Ventura County community).

 

The “community based” care that was promised when the state hospitals were shut down never materialized. It was never funded. What little was funded was progressively gutted as the opposition to taxes began to dominate the American political landscape in the early 1980s. Even though Americans pay dramatically less taxes as a percentage of their income than at any point in American history since the income tax was established, the prevailing narrative is that those damn liberals are trying to get into your pocket. You curse social programs that in reality take up a tiny fraction of the overall US budget…. until you need them.

 

Programs for the mentally ill, generally geared to adults anyway, continued to lose funding and erode until the Great Recession of 2008 killed them altogether. Facing millions (or, in California’s case, billions) of dollars in revenue shortfalls, states began to kill off what remained because, well, let’s face it, families with mentally ill kids don’t make up a very big voting bloc. Politicians are free to cut “non-essential programs” because it plays well with middle class voters struggling to stay afloat.

 

So the current generation of parents with mentally ill kids had nowhere to turn. In California, even residential placement is now handled by SCHOOL DISTRICTS. The Department of Mental Health has dropped even this. What do they do now? I couldn’t tell you. I am not even sure why they still exist.

 

School districts are now required to handle all mental health of a child if there is no insurance. Special education teachers have to do what psychiatrists should be doing.

 

All hospital care is acute care. Acute care of chronic illnesses (because all mental illness are chronic).

 

It isn’t that there are “gaps” in the system. There is no system.

 

Most of the families who wrote to me and Susan were not asking for help. They were just expressing gratitude that we had come forward.

 

But we couldn’t just say “thanks” and leave them alone.

 

They were out there. Their kids were out there. And I could not shake the thought that the only thing between Jani and them was pure, dumb luck. Dumb luck that the circumstances of our life, what we did to keep our family together, attracted media attention.

 

And every time I passed a homeless man or woman raving to themselves on a corner, I couldn’t shake the thought that the only thing between Jani and them was me and Susan. And what would happen when we were dead and gone?

 

And even when we are here, we are not enough. No parent is enough. Susan and I aren’t “heros.” We’ve just been really, really fucking lucky not to have to send Jani to a residential.

 

B was. To Cathedral Home for Children in Laramie, Wyoming. Last week, during a routine bed check, he was discovered bent over in front of his roommate, his pants around his ankles. His roommate’s pants were also down.

 

That was the first report.

 

It took another two days to learn that there was actual penetration. Anal sex. It doesn’t matter what kind of sex it was but I’ll throw that out there because it gets attention. One of the great “taboos” of our society.

 

It was supposedly consensual, not that Cathedral Home ever called the Laramie Police to investigate that. The mother had to do that.

 

I don’t know. Can a 12 year old boy with the mind and emotional capacity of an eight year old “consent?” How did he know about anal sex? I know I haven’t gotten around to having that conversation with Jani yet.

 

B is now on his way home with his mother, out of Cathedral Home for Children in Laramie, Wyoming. It’s a nice place. They got incredible views and you ride horses. But your child might be coerced into sex with his or her roommate.

 

A mentally ill who was kicked out his school district doesn’t just have his bipolar to deal with anymore. Now he’s got this. Born a victim of a defect in his brain, he’s been victimized again.

 

The L.A. Unified School District says they have no placement for him. Well, they better find one. Because Susan and I made a promise to B. Even if it is just him with a teacher and aide, like Jani got for three years. The school district Jani is in did it because we fought for that, because we knew the law. A school district cannot force you into residential placement. They have to provide a free appropriate public education (FAPE).

 

Of course, that is easier to get when an Oprah film crew is waiting outside the school to learn what transpired during your IEP meeting with the school district.

 

If you’ve read the book, you know Jani made a couple of attempts on her life. But we’ve never walked into her bedroom in the morning to find her head wrapped in cellophane, her lips blue, with no pulse.

 

That’s what one of our support group mothers found on Friday morning.

 

Try to imagine what that feels like. You scream, you rip off the cellophane and grab your 9 year old daughter in your arms and she flops like a rag doll. She’s not breathing. You shake her like this is a nightmare and you are trying to wake up. But you are awake. And your daughter doesn’t respond. You feel for her heart and feel nothing. Her body is cold but you don’t really notice that. You can’t take your eyes off her face. She looks dead and in that moment you hate yourself for everything you have ever done wrong. You hate yourself for going to bed the previous night. And you would kill the world to have her eyes flip open.

 

The paramedics are called. It takes them thirty minutes before they leave on route for the hospital. Thirty minutes of CPR to regain a pulse. To the hospital and put on a ventilator. Hooked up an EEG.

 

All lines flat.

 

Presumed brain dead.

 

She wasn’t my Jani and I won’t pretend I felt the same terror. I didn’t find out until this point in the story.

 

And I felt…I don’t know how to put this into words.

 

Another friend and I were talking about something a few weeks earlier. She has mentally ill children too. And she mentioned her fear that, given the odds, one of us in our larger group of parents of severely MI children (of which there are hundreds), one of us, one parent, is going to lose their child to what ever disease they are afflicted with.

 

I hated that and she knew I hated it. I hated because I want to believe, I have to believe, that we can save all our children. The loss of any child to mental illness when it could have been prevented by Thorazine or another anti-psychotic is unacceptable to me. If any child with mental illness that I know dies, then I failed. I failed because it could have been stopped. Medication can’t always do it. Sometimes, our children need to be watched 24/7. If only we are all together, we could trade off, taking shifts, keeping watch.

 

And our children need each other because they are statistically less likely to commit suicide around other children like them.

 

My friend thought it would be her daughter. So when this happened, to J instead, my thought was…”This is it. J is our casualty. J was the one who died, the one we couldn’t save.”

 

Jani was sitting right next me. I grabbed her and hugged her. It wasn’t right. It wasn’t right that my child was a warm body in my arms while this mother had only a lifeless ragdoll that used to be her smiling, happy nine year old daughter.

I failed. I wasn’t able to gather everybody together fast enough.

 

People who have never met us and don’t have an mentally ill child often ask how Jani handles the media. Does she know she’s a “celebrity?”

 

No, because “celebrity” has no meaning to Jani. Fame has no meaning to Jani. Her mind doesn’t work that way. How does she react to film crews? The same way she reacts to any other adult: they’re someone to talk to. She particularly likes to show them her turtles and fish, her favorite stuffed bear “Hero,” her Blink-182 poster (my recent posting of blogs with Blink-182 videos is an homage to Jani, who has a bit of a crush on Travis Barker).

 

She acts like any girl her age would. She likes to talk to them. If you watch closely, you will notice Jani never looks at the camera. She doesn’t pay attention to it. She is too busy talking to the producer who is off-camera and hoping his/her voice can be cut out of the segment, which is hard because Jani wants to have a conversation. There is no coaching Jani. What you see is what you get.

 

Maybe because she experiences hallucinations is the reason the camera doesn’t bother her. Maybe the camera, the lights, the boom mic just merge into the palette along with 24 Hours or 80. She has spent three years learning to ignore her hallucinations enough to be able to function in our world. So perhaps ignoring a camera ten feet away is easy by comparison.

 

Liz Spikol, a blogger at a Philadelphia newspaper who seems to feel I am whoring out Jani to the media, compared Jani to “Honey Boo Boo” (I had no idea who that was) and asked how is Jani going to feel about being the face of child onset schizophrenia when she gets to be an adult.

 

First, Liz, thanks for assuming she will make it adulthood. I really appreciate the vote of confidence. I’m being serious. Liz actually did make me realize that Jani has a better shot than most people with schizophrenia.

 

But I will take a stab at your question because I can tell you what Jani does know now.

 

She knows she has saved lives.

 

She knows because we tell her.

 

I’ve gotten emails from teens and adults who were on the edge of suicide until they saw Jani. And they write that if Jani could fight it, so could they.

 

I don’t share those emails with Jani. I don’t really share anything about what people say about her with her. She’s a kid first, who just happens to have to grow up with a serious mental illness. And she is very much a little girl. Her childhood is preserved. We do no media that would upset Jani’s routine in any way.

 

Jani saves lives. She inspires people, most importantly other kids with severe mental illness.

 

J mother would not accept the brain dead diagnosis. She pushed and pushed and eventually the doctors must have seen something on the EEG, however faint. J was airlifted to another hospital. Over the next few hours, she came off the ventilator. Then half of the brainwaves restarted. She started to twitch and move as autonomic function was restored. The brain was rebooting. But none of us had any idea how long she had been deprived of oxygen. Was there anything left of her pre-frontal cortex? Would she ever be herself again?

 

Twelve hours after being declared brain dead, J woke up. She has no memory of what she did that got her in the hospital.

 

But the psych hospital won’t admit her, even though this is her second sudden suicide attempt without warning in the space of six weeks. Go to bed happy. Wake up and try to die. This is not depression we are dealing with here. This is a sudden command to kill herself.

 

Thought disorder.

 

Voices.

 

Psychosis.

 

But the psych hospital won’t take her because technically, you have to be an immediate threat to yourself or others IN THIS EXACT MOMENT IN TIME. Otherwise, they can’t justify it to insurance or, in this case, Medicaid.

 

The hospital doesn’t want to fight to get paid. They don’t want to eat the cost of inpatient care.

 

We can get Jani directly admitted to UCLA if we have to. Of course, it helps if a Discovery Health film crew took video of me taking her in.

 

So here is my point: Jani has had video cameras watching her, sometimes for months at a time on a daily basis, making sure she gets the care she needs. The public watches Jani.

 

But someone has to watch out for the kids who don’t have cameras and newscrews and books about them. You watch and read about us.

 

And that is fine, but like I said at the beginning, this was never about just Jani. First it was about fighting an insurance company. And then it became something much bigger.

 

Liz, Jani is the “face of child onset schizophrenia” because through a series of events that started back in 2001, she is only one you can see.

 

“Poster children” are not “poster children” for themselves or their own families. They exist to remind you that there is something that needs to be on a poster. They call you to a calling.

 

The media doesn’t always cooperate with what Susan and I are trying to do. I understand. There is only so much you can do in a five or fifteen or thirty minute segment. They don’t give me time to talk about the other children like Jani because one of the Kardashians is up in the next segment and the media assumes you, the viewer, have the attention span of a gnat. For them, it is just content. Even though many of the individuals do deeply care, the network is breathing down their backs and they got three minutes until commercial.

 

I’ve only got time to show Jani’s “face.” But you got to admit, it’s a beautiful face. And if it keeps childhood mental illness in your mind enough that the next time you hear about someone struggling with their child who is just a bit “off,” you will say, “You know, I remember this girl….” then it was worth it.

 

And if Jani’s face makes you come here where I can tell you about B and Jessica and the countless other kids like them, if Jani introduces you to that torrent of mentally ill kids who need you be to their video camera, their microphone, then it was worth it.

 

You know what I hope Jani feels about this when she gets to be an adult?

 

Nothing.

 

Because I hope by the time she gets to be an adult, the world will be a different place where mental illness is treated like we treat the flu now.

 

And I need you to make that happen.

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