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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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36 comments on “Can’t Lose One (We Love You More Than You Know)

  1. Michael,
    You, Susan, Jani and Bodhi are the “poster family” for all of us who have children who have special needs. My daughter doesn’t have mental illness persay, but brain injury from an infection which has resulted in mood disorders, depression, impulse control disorder, and other disorders. Jessica (my Jessica), is similar to Jani, in that she is a one in a million. She had only a 40% chance of survival. She shouldn’t be able to walk and talk, but she does. Your facebook group has brought me so much joy, knowing finally that I am not alone. Each night, I keep you and everyone in the group, and those not aware of it yet, in my prayers. God Bless us all

    Note from Michael: Thank you, Noel, and my congratulations to Jessica for all she has achieved!

  2. I just finished reading your book, and not once did I think this book was only about your beloved daughter. I had absolutely no idea any child could face serious mental illness, particularly one who lived in what would appear to be such a supportive atmosphere – both her parents with her from birth, fighting to figure out what’s going on. I hope someday the world can appreciate Jani and support her for exactly who she is, along with all the other children and adults with mental illness. My eyes have been opened.

  3. Another emotionally and compelling blog, Michael. The Oprah special has changed my life. If I have never told you this, I will tell it now: I was going to be a film major, however, thanks to the oprah special I decided on becoming a psychology major. :)I want to help people like Jani and others who need help. I was about die from self starvation due to anorexic tendencies, however, once I got good care from MCLA, rather than fresno mental health, I recovered–I could have died from that–especially with the amount of medications they were giving me. I look back at this moment and think that other people who don’t have support–what are they to do. 🙁 I am lucky that I have great parents, my mom saved my life, literally, much in the same way as you guys saved Jani’s. Please keep up the good work, hope to visit you in L.A on saturday–I am seeing my doctor at MCLA on Saturday. 🙂

    Note from Michael: We’ll be here!

  4. I have been talking about the lack of mental health services in this country. How insurance companies will not fully cover inpatient at private mental hospitals. Joel did go to a public mental hospital/ treatment centre called Heartland hospital in the summer of 2010. They do not provide follow up only a referral to another treatment centre that the patient must do themselves. They did not keep my husband long enough to stablize him on his meds. three weeks was not enough for someone as ill as my husband. The last hospital let him go after 72 hours without stablizing him at all. They let him leave in a psychosis. That was in Spring 2011. We need a change in the health system that forces the insurance companies to pay for care and treat mental illness the same way cancer patients are treated. No one should have to go through this alone.

  5. I agree with you it’s not just about you and your family. It’s a bigger picture then that. As you stated above your publicity is pointless if it does not serve as a vehicle to bring attention to the plight of others. It’s horrible what happend to B and I do hope the school district does find a placement for him. It’s gut wrenching to have to hear about the horrific incident that happend with Jessica. I feel so bad for her mom. To have your child come so close to death has to be a parents worst nightmare. I’m glad to hear Jessica is okay. That’s lousy that she won’t get admitted to the psych hospital even though I know the reasons why. For Liz to compare Jani to “Honey Boo Boo” is ridiculous. You are not exploiting your child to the media. I don’t understand why people keep on pointing out that you or members of your family are celebrities. Oh wait a minute yes I do. People automatically associate because your on tv and you got a book published that makes you a celebrity. I beg to differ You and your family are just ordinary people. Your right Jani does save alot of lives and inspires alot of people. She’s a gift from god and a very special one at that. You and Susan may not be heroes but you are wonderful,kind and caring people. It’s people like you that makes this world a better place. God bless you and your family.

  6. On my wall I have a picture inscribed with Ghandi’s quote ‘be the change you wish to see in the world.’ It is my prized posession … a gift from my small child, who saw it and said to my husband that this ‘is my mommy.’ I’d never heard the quote before, but I tell you – I will carry it in my heart forever. For many reasons.

    As a child with severe MI, I was taught that you ‘suck it up’, dont tell others what you think (see, hear, feel), and don’t DARE let anyone ‘outside’ think there is anything wrong. Get it together or … else. And ‘else’ it was. Many times. Though sick as hell – to make it, I had to learn to act like I was not to the world outside. Treatment? Yeah, I got it. Begrudgingly, and not without ridicule and a price.

    I learned a lot of wonderful lessons from my ‘youth’ …. exactly the kind of person I DIDNT want to be. Shame, hiding in plain sight, just smile … screw that. I did gain the ability to ‘present’ well though, never mind what is raging in my brain, and have leveraged this endlessly. I have fought battles on many fronts. Trying to communicate my experiences to others (though that has backfired a few times ), reduce the stigma associated with MI, maneuver thru insurance hell, and multiple battles regarding ADA/edu policies. I stood firm – I stand firm – even when the moment the battle was over I crumbled in a heap to the floor.

    All of this has helped to shape me into the kind of person I want to be – what I STAND for. Has it changed one little bit my MI? No, of course not – but if my little one can see that I ‘be the change I wish to see in the world’, I am sure as hell doing something right.

    Ok so, the point? You are being the change you wish to see in the world. You and Susan are both doing this. What you do to help your kids has, and will continue to, help others. By living what you believe – no matter how difficult – you are sending a picture to the world of what matters most. Love. It has been hard – and you have done it because it’s what you believe. Jani is a fighter – the example you have set for and the love she feels will provide her with momentum to get through the rough patches.

    There are those of us who can never remember NOT being suicidal. Day in, day out. It is hard for some to imagine this, though while not, perhaps, common – it does happen. To end each day knowing that, at the very best, I’ll still be ‘like this’ in the morning. Yet I am here … day after day. Why? For my boy. For others. To show that I can make a difference regardless. I am living what I believe. Guide her, love her, and she will too.

    Liz

    Note from Michael: I love your strength, Liz. I was actually feeling a bit down and I come on here and read your battle, your fight, and it totally fired me up again. Thank you!

  7. When hospitals refuse to admit these kids or insurance companies refuse to pay why not start a letter or phone campaign to let them know that people are watching in the same sense as a camera crew lets them know that? Post it on your FB site and let people take action? It’ an idea.

    Note from Michael: That is exactly what we do at http://www.facebook.com/janifoundation.

  8. michael’s blog
    dear michael.

    after reading alot, the Ghandi quote: Be the Change You Wish to See in the World, is what you two are doing. How divine. Now i’m looking for where to buy your book online. I loveyou both. Wish I was doing better for myself. I would do more like I used to. Thinking about your family is not doing anything. So I want to buy your book,read it and tell people.

  9. i said you two are emulating Ghandi. And i want to buy your book and read it and tell others about it. talk about it, what you’ve been through, pass some info on – my facebook. Maybe it will help someone who needs it. love, sari

  10. I am too beat today to write much on this, it’s been ‘one of those days’ – but I want to share now, else I forget. When I look back at what I have written to you, it looks so … hopeful. I have pondered this – how is it possible that I experience what I do, yet convey hope? Well, cause it’s there for the taking. Or the giving rather. The catch is that, MI or no, we have to choose to hope, choose to live, choose to be ‘happy’. The irony of me writing this while feeling like I am is not lost at all. It is, rather, further emphasis of the point. I am making a choice.

    The choices for folks with MI are a bit different sometimes, but with some foresight and determination, it is possible to carve out the things you want. I have a wonderful spouse, who is nothing like me in this regard. From day 1, I had to be clear that ‘this is how it is – take it or leave it.’ There is no hiding a shelf full of psychotropics or ‘mini vacations’ from someone. He provides me with a frame of reference for reality. The ‘real reality’ we call it. I dont have to share much about whatever – just say ‘honey, hypothetically speaking if there were…” and I can adapt from there. He is my anchor, yet without him I could not fly.

    Choices, Michael. Teach them to observe, figure out what tools they need, and seek them out – by chosing carefully and adapting what’s already there to suit your needs, that which once seemed impossible is now, maybe just a little bit, less so.

    Liz

    Note from Michael: I’m trying. And regarding it being “one of those days,” remember life is a series of moments strung together. It is not happiness or depression or anger or psychosis. Every moment is its own space in time. What this means is we can always start again in the next moment.

  11. Pass the word
    I’ve posted your book & FB group on my own FB page asking people to pass the word. Perhaps if enough people do this it’ll become a trend.

  12. Continue to have courage!!
    I first saw the story about your daughter on Oprah. I never knew that years later, I would be fighting my own battle trying to help my now 11yr old son. This past March he was first hospitalized for trying to set fire to our house. That is when he confessed to hearing voices and seeing visions. He has been hospitalized 5 times since. We live in Las Vegas, Nevada and have no idea where to turn, however after an incident almost 2 weeks ago I had to get “stupid” at a treatment team meeting and bring in the butcher knife he pulled on me and himself and a picture of my 2yr old granddaughter that lives part-time with us so they could have a visual of what I have been trying to express to them. I admire your courage and your stamina to continue to battle for your precious child. I know that I must tap into that same within me in order to make sure that my son gets the help he deserves. I wonder if I can ever contact you for advice? Blessings to you family.

    Note from Michael: You can always contact me. I am always happy to help in any way I can. My email is michaeljohnschofield@me.com but I think you might already have contacted me through the Jani Foundation Facebook page. I will go check again.

  13. Mr Schofield, I just finished reading “January First” and wanted to thankyou for sharing your story with the world. I cannot imagine what you’ve been through with Janni but it sounds to me like you have such a strong loving family. Keep doing what you do and know that like so many others I’m sure, my heart, thoughts and prayers go out to your family and the millions of others who may be struggling to create a “normal” life for a loved one. Thankyou again! Sincerely, Tammy

  14. Hello Mr.Schofield Janni and Mrs.Schofield and of course Bodhi I just finished reading your book January First after receiving it at the taping of the Dr. Phil show my heart went out to u and yours after u appeared recentyon the show.but after reading your book it brought tears to my eyes and I really felt the love and pain you experince as a parent and your in my prayers. o all of you n I wish for God to continusly watch over your family .thanks for sharing this heartfelt journey.

  15. My son’s illness
    Hi, my son was diagnosed w/ psychosis 2 years ago at the age of 19. Reading about your challenges was sad to read but at the same time gave me confirmation that I was not alone. I have to continue to find answers and resources for him. Plus accept his illness along w/ the hopelessness of a limited future for him. Mental illness is worse than cancer, heart disease, etc because we live in a society that does not know how to address and inconsistent practices.

    Note from Michael: Nancy, you are definitely not alone. We have two great, private support groups for parents just like yourself. One is on Facebook at https://www.facebook.com/groups/144622772289553/ and the other is on Yahoo: http://health.groups.yahoo.com/group/parental-support/. You are welcome in either or both.

  16. Wow! I really just have to applaud you and your wife. You are both amazingly enduring, and loving parents. I have a lot of respect for you and wish you peace through all your troubles!

  17. Wow!
    I have just finished reading your book this morning – was late to work actually as I wanted to finish it. It’s now 7.30pm at night and I’m still pondering on. Thank you for sharing your story, I first read about you when stuff.co.nz (yes I’m emailing all the way from New Zealand) picked up the article, and I immediately got hold of the book. I think the courage, determination and strength you and your wife showed is amazing. Not amazing because I know there any many many people in the world who do this on a regular basis, but amazing because A) you fought a long hard battle and B)you for the most part won. I just wanted to let you know that your book has gone far and wide (and NZ isn’t a one-hick town) and you’re helping to open the world’s eyes on mental illness. Thank you for caring enough to share your family’s story with the world 🙂

    Note from Michael: Thank you. If you know of any families with MI children or teens in your neck of the woods please feel free to have them email me at michaeljohnschofield@me.com. We have some great online support groups.

  18. I just finished your book and I wanted to let you know how much I appreciated your honesty. No one knows how they will react when they are faced with a relative with a severe MI. Having a relative with MI is so hard and it doesn’t always put the people around that person in the best light. My sister had a nervous breakdown at 19 and was diagnosed with Manic Depression and Schizophrenia. It was a terrible time for my family. She was shipped to unsuspecting relatives, put on a Greyhound bus to nowhere and basically just treated horribly by all of us. We didn’t understand it and wanted her to “snap out of it.” She was always different from the rest of us and to be honest no one understood her at all. We didn’t understand why she did the things she did and we were so embarrassed by her, even prior to her breakdown. When she finally was diagnosed the things she did growing up made more sense. I guess what I am trying to say is that having a loved one with a MI can, at times, bring out the absolute worst in someone. It’s not something most people have ever seen before or know how to deal with. I am sorry that so many people have judged you and your wife. I thought your book was well written and very brave. I would not want the entire world knowing all the mistakes my family made with my sister (too many to count.) Best wishes to you, Susan, Jani and Bohdi. Your family is in our prayers.-Niki

  19. That makes no sense
    Is Jessica the girl who also stabbed herself in the neck with a wooden skewer recently and she was denied hospitalization then too? Has the mother thought about contacting the ACLU? I’m not sure if this is a case they would even consider but in my opinion this has to be some type of human rights violation (even if they can’t help maybe they could point to someone who could). A 9 year old who tried to kill herself and nearly succeeded but is being denied psychiatric care is something the media would really latch onto.

    Here in Ontario we have what is known as the Ontario Mental Health Act. It lays down the law when it comes to involuntary admission.

    http://en.wikipedia.org/wiki/Ontario_Mental_Health_Act

    The wording of the act means that it doesn’t matter if the person is suicidal or a threat in the present if they did something that suggests they are a danger to themselves or others in the recent past then they are involuntarily admitted.

    I’ve have been involuntarily admitted on three separate occasions. Two of those admissions were the result of an overdose. What happens in this case is you are kept in the ER or ICU until you no longer need medical treatment. During your time in the ER and ICU you are prevented by leaving through what is known as a form (a form 1 is 72 hour hold and a form 3 is 2 weeks) after a form has expired a new one will be filed. After the ER or ICU you are transferred to the psychiatric floor for treatment there, it does not matter if you wake up in the ICU and say I’m not going to do it again or if you’ve spent 2 weeks in the ICU once your medical treatment is done you will be admitted for psych treatment. While you can fight a hold and go before a judge anyone who has made a serious attempt on their life will likely not be released until a doctor says it’s ok. While we do have problems with our health care including mental health care we do have one thing going for us we do not fight with insurance companies doctors make the decisions. I have had friends who have taken every pill in their medicine cabinet and have ended up in the ICU for a month even so they still go to the psych floor afterwards even if they do not feel like doing it again, something made them do it and releasing them is too much of a danger.

    Note from Michael: Yes, it is the same Jessica. What you describe is the difference between a single payer health care system where the doctors make the decisions as opposed to in America where medical decisions are made by either insurance companies or Medicaid. Jessica wasn’t admitted because the psychiatrists don’t want to risk not getting paid for service.

  20. You say the hospital doesn’t want to risk not getting paid for service but what about a lawsuit if this girl succeeds in killing herself the hospital opens itself to many malpractice lawsuits and any half decent attorney will claim that the signs were all there and yet the hospital denied treatment. There has to be some law organization that can help in this situation (and if there’s not there should be). I know you guys aren’t big fans of NAMI but could they help?

    This really really ticks me off knowing that if I were to need it I could be hospitalized in a few short hours but a 9 year old who does need it can’t get it. This is medical malpractice. (Sorry if I’m ranting this just really pisses me off).

    Note from Michael: Rant away. Unfortunately, the law provides fewer protections than most people think. It’s not medical malpractice but even if it was it wouldn’t matter if the child is dead. I don’t know if NAMI can help. I am not familiar with them getting involved in situations like this but if they do they would be great. We take any help we can get when it comes to helping children.

  21. Hi! First off I would like to say your story is very interesting to me. I am 35 years old and have currently been diagnosed with bipolar disorder amoung some other disorders as well. As a teenager I was hospitalized and evaluated but released after 2 weeks to a state hospital because my insurance ran out. At that first hospital they did a full evaluation and came up with some possible diagosis. After the state hospital experience where they did absolutely nothing to help me I was signed out and taken home by my parents. I went to 8 different schools because of behavioral issues that noone seemed to understand. I never got the help that I needed and continued to suffer for many years. I always felt very alone in life andsometimes I still do. I am now a mother of 4 kids after becoming pregnant with my first child when I was 17 years old. I have done well as I raised my children over the years with only a couple bouts of severe depression. I have to say I am pretty antisocial and I don’t have any real friends. I seem to like it that way since I find people to be very irritating after time. Just this past year I became so manic that my heart rateand blood pressure were so elevated that they had to put me on seroquel. I also take lexapro for depression. I hate taking medication but it does seem to help one symptom only to cause another though. It is very hard to have mental illness. As much as I try to act as if I am normal and life is good I know I am only pretending or waiting for the nexttime that I will fall apart. It’s a struggle for me and I just want to say you guys are awesome parents and keep up the hard work.
    One question I do have is, have you guys ever gotten DNA testing to see if there is a genetic reason for your childrens disorders?

  22. Dear Schofield Family:

    I am so deeply inspired and in admiration of you guys. The first time I saw your story I had just begun university with no idea as to where my life was going – and I’ll try to make this sound as not corny as possible, but after watching your story I decided then and there that I was going to go into the field of mental health. I hope to be a clinical psychologist. I want to thank you guys for having the courage to present this story and help people on so many different levels. I will be forever grateful that you’ve given me a direction! Jani is a beautiful girl and I wish you guys every happiness. There is no doubt in my mind that she and you as parents can overcome this illness. I want Jani to know that I think she is a hero!

    Love,
    Kylie from Canada

  23. thank you!
    Dear Schofield Family:

    I am so deeply inspired and in admiration of you guys. The first time I saw your story I had just begun university with no idea as to where my life was going – and I’ll try to make this sound as not corny as possible, but after watching your story I decided then and there that I was going to go into the field of mental health. I hope to be a clinical psychologist. I want to thank you guys for having the courage to present this story and help people on so many different levels. I will be forever grateful that you’ve given me a direction! Jani is a beautiful girl and I wish you guys every happiness. There is no doubt in my mind that she and you as parents can overcome this illness. I want Jani to know that I think she is a hero!

    Love,
    Kylie from Canada

  24. God bless you
    We just found your book — and the criticisms pro and con. Thank you. You and Susan are incredibly brave and to be commended for sharing your story which will open doors for others living through similar situations. Only others who have lived through the kind of pain that comes with the “terminal” diagnosis of a child or a parent can understand how crazy the rest of the family becomes. It is similar to the AA -AlAnon phenomenon: outsiders see the family acting crazy, and think they are “the problem,” driving the poor alcoholic to drink… Yes, we do act crazy and we definitely do need our own treatment program, but alcohol and the alcoholic’s behavior which are as much of a disease as schizophrenia and cancer, are the cause. If you haven’t been there, you can’t understand.

  25. “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.”

    I feel like I am this person whose mind you opened up to MI children.

    My family has always struggled with mild mental illness, nothing like your family has but chronic depression is never easy no matter how mild it is. Because of this I have always been compassionate for the mentally ill but beacuse of your family and what you have shared on here and on facebook, I now feel so much more then compassion. I feel the need to help and fight for these children and teach others what you have taught me. Even if I’m only able to help $10 here and there or spread the word about your foundation, I feel like maybe I could do a tiny bit of good in this world to help this cause. Thank you for opening my eyes to it.

    Note from Michael: Thank you.

  26. 100% raw vegan diet will help her/ dont give up/ look at food

    youtube raw vegan diet cures schitzo…

    dont give up

    Note from Michael: Food does not cure schizophrenia. “Natural” treatments are not a panacea.

  27. TO Michelle in Las Vegas
    I was just reading your comments Michael and read one form Michelle in Las Vegas with a son who is MI. I wanted to share with her that she is not alone I live in Las Vegas and have 3 MI boys. My diagnosis’ run from childhood schizophrenia, Reactive Attachment Disorder, PTSD to ODD and ADHD Michelle you aren’t alone!! If you need someone to talk to that understands I do! I live in Las Vegas also!! My grandson lives with my as well. My email is kamoericke@gmail.com

  28. Reply to Kerry on raw vegan diet
    I laugh that someone would even suggest this for many reasons.

    1. I don’t know any kids (both kids with MI and those without MI) who would eat a raw vegan diet (Parents all over the world have to fight to make their kids eat vegetables).

    2. Raw vegan diets are not healthy especially for children. Kids need fat in their diet it is essential for brain development. You get vitamin B12 from animal products and a B12 deficiency can result in permanent neurological damage which worsens psychiatric illness. This type of diet is also lacking in several other vitamins and minerals.

    3. Kids with MI also will go without food if they can’t have what they want. As a teen I was very thin and if we didn’t have what I wanted or my mom wouldn’t take me to get it I just wouldn’t eat. This wasn’t me waiting for my mom to cave and give me what I wanted I just didn’t want to eat anything else so I wouldn’t.

    4. Diet does not cure psychiatric illness period

  29. Hello Michael, Hello Susan,
    I’ve just read [u]January first[/u] on Kindle (yes, I live in France, so Kindle was the easiest for me).

    I notice that wherever in the world, people with mental illness need help. Not only in France, not only in the US, not only in Africa, not only in (insert country) but in all over the world.
    I am trying to make a law change in my country and it is an exhausting fight. Unfortunately, I cannot help Jani’s foundation on a legal matter as I don’t possess enough knowledge about the American legal system.

    Reading your book, I could read the same raw feelings as my mommy and daddy experienced. Mind you, I suffer “only” from ADHD + Single Sided Deafness.
    But whatever the diagnosis, suffering remains.
    I don’t want to sound like if I had all the answers, but suffering from a sensorial impairment + a MI worsens the problem. MI and sensorial impairment are sometimes so intertwined that you don’t easily know which is the chicken and which is the egg.
    Sometimes, I cannot know from certain if a problem X comes from my hearing loss or my ADHD, or both.

    Helping people, children, adults, elderly, babies…, whoever you want, with mental illness cannot bypass the thinking about the physical or sensorial impairment. Otherwise, we think about such a quest on a piecemeal fashion mode, which does not help.
    If we want to help people, we cannot help them for their mental illness and putting apart their sensorial impairment, physical disability…
    I know it sounds obvious, but I see it so often in France that I wish we don’t repeat the same mistakes.

    My question now is how can we help people who suffer from mental illness and sensorial impairment (or physical disability, or any other disability) ?
    How can we help people and not illnesses ?

    What can we do for people with sensorial impairment (or physical disability, or whatever else) and mental illness ?

    On a note for hope, I am now 26 years old, I have obtained my Bac (the French diploma which qualifies you for university) and I learnt four languages (French, obviously my mother tongue, Italian, English and Modern Greek).
    I go back to university to study law. I hope to become a jurist, a journalist or a lawyer, I don’t know yet and I have three years to decide.
    Maybe I won’t have children and I am ok with it.
    Maybe I will stay single and I am ok with it.
    The most important for me is to be healthy and happy. The rest will be or will not be, and it is ok for me.
    If I need Ritalin to be healthy, then I need it. I would not wonder if I would need insulin with a type 1 diabetes, same for Ritalin.
    If I don’t need Ritalin one day or another, great ; otherwise, it’s ok.
    I will never understand why people (even doctors) think that stopping Ritalin has to be the goal no matter what. They would not wonder such a question if I needed insulin for type 1 diabetes, they would find such a question silly.
    Why in the earth it cannot be the same for Ritalin ?
    Honestly, I sometimes wonder if they prefer a patient unable to live without medicine or if they prefer a patient able to live with medicine.
    Urgh, there is still a lot of work to cancel those silly assumptions !!

    So, where can we start the job ?

    Take care

  30. Thank you, Michael, for sharing your family’s story.

    We have family history of mental illness on both sides, with onset anywhere from early childhood to teen years, including either bipolar disorder with psychosis or schizophrenia (another lovely psychosis NOS diagnosis), which ended with my sweet cousin committing suicide in his early twenties. His mother believes it was a pragmatic and lucid decision to end his suffering, and we all get how amazingly hard it is.

    Through brutally raw and beautifully touching outreach like yours, others can develop the same understanding as those of us with personal experience. I’m in the waiting game myself, with a son who just turned 5, offscaled his IQ test in several areas at 3 years old (after we were asked to have him go to a different preschool), and who, though his day to day is nothing like yours with Jani, makes me wonder and worry about what might be coming next for him and what mental health issues may manifest more clearly. We are lucky to have found a small gifted preschool that goes up to first grade, willing to work with him, and a public full-time gifted program supported by a wealth of school resources, in an area of the country with one of the highest rates of autism, and huge funding for individualized education. And we are working with a psychologist to keep adapting as things change.

    Your story spoke to my heart, and I look forward to following your family’s journey further. Donations are on the way.

  31. u r amazing!
    I would like to tell you and your wife that you are amazing parents. I believe that you where given these special spirits to guide and care for because no one else could have the way you guys have. I have followed your story when it has been presented on tv, mainly because of the strength of you and your wife and the inspiration you are to so many people. I would just like to tell you that about a year ago I was introduced to a few things that have really helped my family physically and emotionally. If you have any interest please feel free to email me, It just might be beneficial to you and your family. You are in many peoples hearts and prayers.

  32. Somehow we keep marching on
    Hi Michael,
    My name is Sarah and I’m in school for occupational therapy. I am particularly interested in mental health and your daughter’s story touches my heart. I may not be the most wise person out there, but I just wanted to thank you so much for sharing. I work in a group home for people with developmental disabilities and some of them have zero visitors. It is really sad. I encourage you to always be involved in Jani’s life, for as long as you can. What you’re doing is right. She needs to be loved and know that she’s not alone in this world. I would do anything to spend a day with this remarkable girl.
    I’m writing a paper on childhood schizophrenia, and utilizing this blog as part of it. I want you to know that you’re an inspiration and if I wasn’t a poor college student I would do anything to help you. Even with all the struggles of simple, daily life, somehow we keep marching on.

    Note from Michael: I will always be involved in Jani’s life. And Bodhi’s life. I have no life without them. They are who I am, if that makes any sense. If you want to write to me at michaeljohnschofield@me.com and were willing to share the general location of the group home (city would be fine) there might be families within our large support network close by who would be happy to visit (if that is allowed). I just hate to think of any child alone and would like to help if I can.

  33. never say never
    In reply to this: “4. Diet does not cure psychiatric illness period ”
    WRONG!
    There are some dementias that are directly caused by diet. Alcoholics lose the ability to process a certain vitamin which in turn causes psychosis/dementia. Also there is another condition where copper in one’s diet does something to the mind/mental illness….just two examples and there are MORE in fact one of the tests that are given to infants at birth relates to diet.
    SOME mental illnesses ARE caused specifically BY dietary means. OH-and don’t forget recent discoveries pertaining to gluten?
    A vegan-raw diet may not be the global “cure” for everyone–but the statement given was dangerous. For some people diet is exactly the cure and the medical mainstream will not argue because it is a known fact.

    Note from Michael: I stand by what I said. Diet ALONE will NEVER cure mental illness. It is hard enough to get MI kids to eat anything. You can’t just change their diet at will. Their lives are hard enough without torturing them by taking away one of the few things that brings happiness on the off chance the diet might work (and alcohol poisoning and heavy metal poisoning is not a diet issue-that’s just straight up poisoning). Gluten free is a fad that will fade away like all others.

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