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"The American Nightmare"

I could never do endorsement deals.

 

It’s not necessarily out of any moral sense. I couldn’t be a shill, even if I wanted to. I’m just a lousy salesman.

 

Probably not a good thing to admit when you have a book coming out. The sales division at Crown isn’t going to be too happy about that.

 

Obviously, honesty can be part of the problem. I am brutally honest, as regular readers of this blog know. That’s not from any sense of morality. No, I’m so honest I have shot myself in both feet on more occasions than I can count. It’s gotten me fired from jobs. It’s lost me friends.

 

That’s not morality. That is compulsive.

 

I am honest because I can’t not be. It’s how I’m hardwired. I will open up my big fat mouth not only when it is of no benefit to me to do so but can even cause harm to me (hence my friendly cyberstalker, “WarriorMom”).

 

But it’s not just a compulsive hyper-honesty. I can’t even sell things I believe in. If Jesus was standing right next to me, I would have a hard time selling you that God exists.

 

Which can be a problem if you’re an advocate for a cause because, let’s face it, advocacy is basically selling except rather than selling a product you are selling a concept of a better world than the one we currently have. It’s the same basic principal. You have to convince the public to support something that affects you directly but, at the end of the day, will not drastically affect the life of the person on the receiving end of the sales pitch one way or another.

 

My first direct experience with mental health advocacy was when Susan and I were asked to participate in a team at the Ventura County NAMI Walk in 2009. I was vaguely familiar with the concept of “walking” to raise money.  I had heard of the Susan G. Komen “Race For the Cure” Foundation Walks. Jani’s old school does a “Walk” every year to raise money for the PTA.

 

But I expected the NAMI Walk to be different, because NAMI has something the Susan G. Komen Foundation and the Oak Hills PTA don’t.

 

An enemy.

 

Yes, breast cancer is an “enemy” in the sense that it kills millions of women, but that enemy doesn’t have someone pulling the trigger other than your own DNA. This is not diminish those who fight against breast cancer, or any other cancer for that matter. They are fighting against Nature, which is the biggest enemy you can take on. My hat is off to them.

 

NAMI’s enemy is not mental illness, or at least it is not supposed to be. I only know of one organization dedicated to funding research in cures for mental illness, and I can’t even think of its name off the top of my head.

 

In general, mental health advocacy is not looking for a cure. Before you can find a cure for something, you have to understand what it is. And before you can understand what it is, you first have to get the rest of the world to acknowledge it exists.

 

Hence, NAMI’s “enemy,” and the enemy of all mental health advocates, is society itself. The weapons of the enemy are either a completely non-existent mental care system, a woefully inadequate one or, my personal favorite, a bureaucratic government agency made up of clock punchers who simply don’t care enough to buck the system they work for and demand better for the those they are supposed to help (my disdain for the L.A. County Department of Mental Health and their “contracted agencies” like the Santa Clarita Child & Family Center are well documented in previous blogs).

 

For those of us in the field of mental health advocacy, our enemy is right in front of us. It’s that big building downtown that says “City Hall” on it or that bigger building that says “State Capital” or that architectural salute to American political failure, the US Congress (which today makes a better tourist attraction that a house of leadership-that goes for both Parties). It amazes me that one of their own (Gabrielle Giffords) could get shot in the head by a young man with schizophrenia and they still sit on their fat asses. I commend the effort it must have taken them to get to their feet with Rep. Giffords returned to the floor of the House.

 

I could say something really awful here about what to do if voices in your head are telling you to shoot someone, but I won’t. It takes everything I have not to write it (although I essentially did so I guess there is no point in pretending anymore). Seriously, how many more dead nine year olds is it gonna take?

 

A lot, until one of those nine year olds happens to belong to a member of Congress. Or until the person who pulled the trigger happens to be the son or daughter of a member of Congress.

 

Someone recently told Susan that the lack of mental health care is a “public health emergency.” She’s right, but I’ll take it one step further. It’s a moral emergency. It is a civil rights issue (when a government prevents a group of people from their God-given right to happiness, dignity, and a sense of well-being then that is a violation of civil rights).

 

It is the failure of our society to help those least able to defend themselves. They can’t defend themselves. They are too busy fighting a war inside their own heads. They need us to defend them from the world outside. That is our moral imperative.

So when I agreed to do the NAMI Walk, I expected a march through the streets to City Hall, chanting and raising our fists in the air. I thought we were walking to let the world know our children, our siblings, our parents, our families, were here and by God we weren’t going to let them die.

 

Except that we walked along the beach in Ventura to a swamp, then turned around and came back again. We didn’t even walk in a circle. We literally backtracked along our previous route.

 

There were no bullhorns. There were no chants. There were no fists in the air. There was no righteous indignation at the lack of services for the mentally ill.

 

In short, there was no fucking anger.

 

Those of you who follow me on the Jani Foundation Facebook page know I have been very critical of NAMI and other mental health advocacy groups, which I suppose to an outsider seems like cross-purposes. Because it fell that way. It felt like those organizations didn’t represent my family and didn’t represent the families and individuals who come to the Jani Foundation page everyday because they don’t know where else to go. As time passed, I found myself with a large group of people who desperately needed help and I couldn’t provide it, so I attacked the organizations with the deep pockets. Because I was angry that they weren’t helping the families I knew.

 

Which is partially true. Whether NAMI is helpful really depends on what you are looking for. If you are looking for emotional support, they are good for that. I was looking for emotional support. I felt like I was in charge of a group of refugees, trying to live in the middle of a battlefield between their child and their child’s mental illness. I have watched their children suffer and I have watched these parents do everything in their power to ease that suffering, often at the expense of their own health. I have watched them fight every day to pull their child back from the jaws of the beast that eats the mind of their baby or babies. I have watched them struggle desperately to hold on to the child they have, both physically and mentally. I have watched the hearts of both the children and the parents break. I have seen families torn apart.

 

I have seen children fight with everything they have against a demon no one else can see.

 

You damn right I was pissed off. Emotional support is all well and good but I wanted to ease suffering and I needed material help to do that, material help that no organization or government entity would provide. What help I have been able to provide has come from you: a select group who came here to this website and took up the fight as well. And what really amazes me about that is it wasn’t necessarily your fight. But you took it up.

 

You know a warzone when you see one.

 

Yes, my advocacy is defined by anger. I know I have lost people because of that. But it is hard to see what I have seen and not get angry.

 

And I now realize that is the real reason why I criticized NAMI and other non-profits in mental health: I expected to find an anger that would meet mine and if you weren’t angry like me then you just didn’t get it.

 

In that sense, I was wrong. I wasn’t wrong about being angry. I was wrong that if you weren’t angry, you didn’t get it.

 

I often refer to the Jani Foundation as “the Malcolm X of mental health advocacy,” a reference to Malcolm’s more militant stance versus Martin Luther King in the Civil Rights Movement. This perception of a dichotomy between the two in their approach to Civil Rights is not entirely historically accurate. King was capable of righteous anger and Malcolm X could crack your soul open like a walnut without ever raising his voice. The perception comes from the fact that King was fighting for an end to segregation while for many years, until he left the Nation of Islam, Malcolm advocated for it.

 

Once, a white college girl came into a restaurant owned by the Nation of Islam where Malcolm was and told him she wanted to help blacks and whites get together. In Spike Lee’s 1992 film, this scene is portrayed a little differently where the white girl says she want to know how she can help and Malcolm tells her, “You want to help? Go home.” What he actually said to her was, “There isn’t a ghost of a chance.” She went away crying.

 

I don’t know that I’ve made anyone cry but I have similarly turned away people like that college girl, for the same reason Malcolm did: she didn’t get it and there was no way she could get it. I wonder how many young people Jani’s story has “inspired” who I then rejected. I don’t know the exact number but I know it’s more than a few. What turns me off them is their positivity. It just rubbed me the wrong way. They have no fucking clue, just like that white college girl.

 

Slowly, this sense of segregation between myself and other mental health organizations conflated into a class issue. Most founders of mental health advocacy groups are wealthy. Most board members are wealthy. Many times it is the board members themselves who make the largest donations (with the exception of NAMI).

 

Again, because they didn’t appear to feel the rage I felt, I dismissed them as inauthentic. They weren’t raising their mentally ill kids. Nannies or very nice private residentials were. They didn’t live the same life. I criticized their fundraisers as “socialite get-togethers.”

 

Tomorrow night, the 8th, Susan and I will be speaking briefly at a fundraiser for The Flawless Foundation, to be held at the Fred Segal store in Santa Monica. It will be the first time we have attended a non-profit event or fundraiser since that NAMI Walk in 2009.

 

Why?

 

Mostly it is because the Flawless Foundation actually provides services to mentally ill. They provide gardening therapy and music therapy, among others. They fund professional development for special education teachers. In short, they do much of what I want the Jani Foundation to one day do.

 

Janine Francolini started the Flawless Foundation after her family moved from New York City to Portland and discovered that the support services that had existed in New York were absent in Portland.

 

This is from their “About” page at www.flawlessfoundation.org/about/

 

“The Flawless Foundation creates and supports programs that accomplish our mission of seeing, discovering and nurturing the perfection in every child.

 

Our philosophy of giving is inspired from a place of gratitude and passion for children. We are creative, hands-on and proactive in our vision to enrich the lives of children who courageously face challenges of neurodevelopmental and psychiatric disorders on a daily basis….”

 

I could never write something like that. I wish I could but I have seen too much shit.

 

Except so has Janine.

 

Malcolm X believed in segregation until he undertook the Hajj, the annual pilgrimage to Mecca that every male Muslim must undertake at least once in his lifetime, if possible. There he prayed beside Muslims of all colors. This is what he wrote in a letter back to the US:

 

“[L]istening to leaders like Nasser, Ben Bella, and Nkrumah awakened me to the dangers of racism. I realized racism isn’t just a black and white problem. It’s brought bloodbaths to about every nation on earth at one time or another.

 

Brother, remember the time that white college girl came into the restaurant—the one who wanted to help the [Black] Muslims and the whites get together—and I told her there wasn’t a ghost of a chance and she went away crying? Well, I’ve lived to regret that incident. In many parts of the African continent I saw white students helping black people. Something like this kills a lot of argument. I did many things as a [Black] Muslim that I’m sorry for now.”

 

I have come to realize that mental health advocacy needs two kinds of people: leaders and soldiers. I’m not a leader, at least not a political one. Janine can get major corporate sponsors. I will never be able to do that. I can’t clean myself up enough to do that. I’m a soldier. I’m your pitbull. I will get down in the trenches and fight the battle alongside you.

 

But we need somebody back home trying to end this war.

 

Tomorrow night, this fundraiser at Fred Segal is part of my pilgrimage. It’s the start of me trying to put the anger behind me. It’s the start of me trying to work with the leaders.

 

Because kids like Jani need both of us.

 

 

 Event info: http://www.flawlessfoundation.org/2011/11/evening-of-gratitude-and-holiday-shopping-at-fred-segal/

 

Update 12/8/11 6:13pm PST: Susan and I have had to cancel. Jani has destabilized, driven by extreme anxiety at our leaving. So we have decided that the best interests of our children we had to cancel. Our deepest apologies to Janine Francolini, the Flawless Foundation, and tonight’s guests.

37 comments on “"The American Nightmare"

  1. Yes, my advocacy is defined by anger. I know I have lost people because of that. But it is hard to see what I have seen and not get angry.

    I have seen what you have seen. I am not angry.

    I do not criticize you anger. It is normal in the situation and should be validated. You have a right to that anger, seeing what you have.

    I also don’t know how you do it — staying bitter and angry. It sounds emotionally and physically exhausting. It was for me. That is why, a couple years back, I promised myself that I would not walk around bitter anymore. It was killing me and it wasn’t hurting “them”. It wasn’t changing the system; it didn’t make my mental illness go away; it didn’t make my parents into parents; it didn’t take the abuse away I had suffered away and it wasn’t punishing my abuser; it couldn’t bring my friend back and his murders didn’t even know who I was; and so on. For me, it was easier to release some of that rage and start seeing the good in things, in people, again.

    My advocacy is now fueled by passion. I still get angry; but, it is focused anger. It is only felt and expressed when the situation truly calls for it.

    Once again, I’m not criticizing. If this works better for you, then do it; but also know that it’s not the only option.

  2. Part 1 [Comment Too Long]
    Yes, my advocacy is defined by anger. I know I have lost people because of that. But it is hard to see what I have seen and not get angry.

    I have seen what you have seen. I am not fueled by angry.

    I do not criticize you anger, of course. It is normal in the situation and should be validated. You have a right to that anger, seeing what you have.

    But I also don’t know how survive constantly feeling angry. It sounds emotionally and physically exhausting. I know that it was for me. In fact, it was killing me and it wasn’t hurting “them”. It wasn’t changing the system; it didn’t make my mental illness go away; it didn’t make my parents into parents; it didn’t take the abuse I had suffered away and it wasn’t punishing my abuser; it couldn’t bring my friend back and his murders didn’t even know who I was; and so on. I couldn’t do it anymore. I didn’t want to be bitter, I didn’t want to be constantly angry at the world. For me, it was easier to release some of that rage and start seeing the good in things, in people, again.

    My advocacy is now fueled by passion. I still get angry; but, it is focused anger. It is only felt and expressed when the situation truly calls for it. It is a bullet, not a cloud.

    Once again, I’m not criticizing. If this works better for you, then do it; but also know that it’s not the only option, even seeing what you have seen.

  3. Part 2 [Comment Too Long]
    I don’t know that I’ve made anyone cry but I have similarly turned away people like that college girl, for the same reason Malcolm did: she didn’t get it and there was no way she could get it. I wonder how many young people Jani’s story has “inspired” who I then rejected. I don’t know the exact number but I know it’s more than a few. What turns me off them is their positivity. It just rubbed me the wrong way. They have no fucking clue, just like that white college girl.

    I do have a clue. I have been there. I have seen mental illness ravage my friends and loved ones; I have felt it as it ravaged my own mind. I have seen the best of people and, at various points, I have seen the worst. I have seen the abandonment, the apathy, the abuse, the reckless disregard. In fact, not only have I seen it, I have been a victim of these things, both within the realm of mental health and outside of it. And, though I am blessed in many ways, I have suffered and struggled for most of my life. My parents are prisoners of their own mental illness and substance abuse and, as a result, I have had to raise myself in many ways (the memory of me forging my father’s signature on the hospital admission papers because he fell asleep and was snoring will never leave. Nor will the day he offered me drugs. Or the day my mother, so overwhelmed by her own emotions, screamed she wanted to walk out the door and not come back); in their absence, I was subjected to years of abuse, from the taunts on the playground I was able to ignore to the years of sexual abuse that no sane human could; I have lost a friend to murder because someone wanted his father’s drugs; I have lived in poverty, dependent on Medicaid, and almost watched my mother die because she (who does not qualify for Medicaid) couldn’t afford the $70 co-pay on her inhaler; and, of course, I have walked through the Fires of Hell known as Mental Illness. Once again, overall, I am really lucky and incredibly blessed, so I do not want to complain too much; but I still “get” being in this war.

    Yet, despite that, I am criticized by those around me for being an idealist, overly optimistic, naive (ha!) and too hopeful. I cannot say if I am these things or not (and if so — why are they bad?). I can say that I have a passion running through me that is deeper, stronger, than anything I could ever express in words. It is a passion for life, for the wicked, for the innocent, for the broken, for the abandoned, for the past, for the future, for justice, for a better world and, above all, for people. People: they are my everything; they are the reason I wake up in the morning; they are the reason that I fight, that I try. that I push forward. I see so much beauty, so much good in every single one of them (I can even see it in my abuser). And I feel love for them. I want to fight for them — I *need*, to the point of compulsion, to fight for them. This need to fight is as strong for the saint as it is the sinner, as well. Nobody is a demon or a lesser human than anybody else. And we have so much power to do good. Even something simple as being able to tell a joke and make somebody laugh. My God. Has anybody thought about how amazing that is? With just your ability to form words (or even without words — facial expressions, movements, etc) you have the power to trigger a hormone in someone’s brain that is known to be the source of pleasure. That is astounding to me — and it continues to astound me every day.

    These are the thoughts, the beliefs, the feelings that guide me. To me, there is no “enemy”. I am not here to fight against fellow humans. It is useless, anyways. When you fight against people — who are animals — they run, freeze up or fight back. That gets nothing done. When you sit down next to them, try to understand them, talk their lamguage, work with them, work for them and, for Christ’s sake, view them as a fellow human being, you may actually get somewhere. Besides, how do you devise a plan of action if you cannot understand and emphasize with your “enemy”? If you understand them, you know them and how to get them on your side and/or do what you want.

    But do these thoughts make me naive? It is hard for me to see myself as naive. I certainly am not ignorant. I am not sheltered. Watching my Dad become violent towards my mother when I was an infant — toddler ensured that I never was. And I get it. I have a clue. I have been in the trenches, too. I just look at the world through a different lense; in a different way. But it is only that — a difference, not a divide. For me, this is what is natural. Being angry, bitter, jaded, etc take effort and energy. They are not my normal state. I can’t function in them.

    Note from Michael: You are right, Eri, in all respects.

  4. Part 3 [Comment Too Long]
    Of course, I also do ask: Who the eff ever got anywhere with pessimism? How can you effectively and tirelessly fight if all you see are demons and the future is only bleak? I don’t doubt that one can; but I don’t understand it. To me, you have to able to envision the field and mountains and world awaiting to dig yourself and everyone else out of the hole (I also say — the deeper you are on the hole, the more things you can work to improve!).

    And I can only hope all that doesn’t turn you off.

    I would also like to add a quote from Ghandi, as this is what I truly believe:

    “All humanity is one undivided and indivisible family. I cannot detach myself from the wickedest soul.”

    Mahatma Ghandi

    “I have come to realize that mental health advocacy needs two kinds of people: leaders and soldiers. I’m not a leader, at least not a political one. Janine can get major corporate sponsors. I will never be able to do that. I can’t clean myself up enough to do that. I’m a soldier. I’m your pitbull. I will get down in the trenches and fight the battle alongside you.”

    Why can one not be both? Throughout history, some of the greatest and most respected leaders (respected by those they lead, that is) have also been in the trenches, in the line of fire, putting themselves at risk. Washington ran in front of his army, encouraging. Napoleon, who was loved by his men, not only ran through bullets; but sat down and talked with them. And so on.

    I hope to become a leader worthy of respect (worthy of being followed) one day; but I do not see how one can be an effective leader if they only sit and watch from afar (if only because people trust you more if they know you ‘get it’). I will always be in the trenches. I can never truly leave. Even if I never expirence another symptom of mental illness, it always there lurking in the shadows (and my family, of course); it has shaped me. And I will always, always, go up to bat for a family, a child, an adult, a stranger. I feel it is my obligation; one that I would feel honored to fufill. But, after I screech and fight, I also plan to turn around and sit down for a talk with those people everyone calls “the enemy”. I have no choice but to.

    Mental health does need two types of people; but they do not have to contradict.

    (Alright, I think I’ve rambled enough for this morning. As always, thank you for putting up with my inability to shut the effup. [Your blog even though I was a spambot!]).

  5. I do hope you’re able to put the anger behind you, or at least focus it where it’s warranted. To be honest, many times I’ve felt like the Jani Foundation wasn’t interested in my help because I don’t have any children at all, let alone mentally ill ones. After seeing a doc on Jani on tv and then seeing another and finding your site and FB page,(and reading your blog) I was shocked at how little there is for these kids, and adults too, who have mental illness. It’s an issue that, now that I’ve been exposed to it, I can’t turn my back on it, so I will always try to work for change, and more help for those who need it, however I can. We don’t always need a personal stake in something in order to care.

  6. Flies
    In a nutshell: You absolutely catch more flies with honey than with vinegar….

    Note from Michael: Actually, that’s a common misconception. Flies have no particular preference for honey over vinegar. Both are sugar-based. Interestingly enough, flies never go near beehives but they do love human trash, which tends to have a high acidic content caused by the rotting of thrown out food. As food decomposes, particularly fruits and veggies, they become acidic (after all vinegar is just wine that has been left to ferment longer).

  7. wow – I’m in shock
    I’m sorry but I stumbled upon this story and I’m in shock. I can’t believe the abuse of this child has been allowed to continue – and been endorsed by Oprah and the medical establishment. Everything you say in your story about this baby — then child — sound like a normal child whose parents had a hard time sleep-training (an hour is not very long to scream it out – try two), then controlling her toddler phase, and continued to make what were passing phases into pathologies that were then medicated and made permanent. My children each did these things you describe during different periods of their childhoods (and so did I as a child) – including having elaborate made-up worlds, hitting and acting out upon birth of sibling, changing their names for long periods and getting angry when we called them by their original name, etc. We just rode through each phase until it passed. What it looks like to me is that you and your wife have a psychological version of Munchausen by Proxy. You have gotten a lot of attention for having a “special” child and you alternately vilify her and romanticize her. You sound at moments like a frustrated novelist when you describe your story – trying to make these ordinary quirks into some version of Rosemary’s Baby. You are desperate that she be “special.” You are now putting her in the public eye — and by the way, Oprah is crazy to suggest that your daughter’s behavior when she “interviewed” her was extreme. Saying “I don’t want to talk!” and walking away is extreme when this strange woman is up in your face with cameras asking you to perform your mental illness for a camera? That sounds sane to me. And the parents glee at putting their child out their for the public freak show is really unbelievable. I have one child with some health issues and I could never imagine using it as fodder for daytime talk. Kids do all sorts of strange things as they develop — hopefully in private — their sense of self and medicating them and/or labeling them and putting them out there in the public is about the worst way of dealing with it I can imagine. Have you ever thought maybe her behavioral problems and habits are more to do with your own issues as well as the extreme medication you’ve put her on and the mental wards you’ve placed her in than with anything originally wrong with her brain? If she survives you, she will hate you for what you did to her some day. I’m sorry, but I feel the need to say it. I am horrified to see this child destroyed — systematically – in public as we watch.

  8. You just pulled off the endorsement deal of your life, getting strangers to pay the rent so that you could keep Jani out of residential. Maybe you’ll need help again, but in looking back you still can’t mask your anger towards the college girls and boys you dragged down into your family’s hell with you, during some of the worst of it, students who were, correct me if I’m wrong, paying tuition for course credit, at a time in their lives when they had the fewest financial options themselves, because you couldn’t pay anyone to do the job. You’ve gotten a long way on being a jackass, but people still respond to you. Compartmentalize and try to move on, but don’t say you’re not a leader because you don’t want to own that stuff. I wish your better self, your sensitive self, your thinking self, your team player self, and the person who Jani trusts, good fortune.

    Note from Michael: Are you referring to the former interns? They hardly went “down into hell with us.” Not even close.

    The more I get criticized for my anger, the less I want to apologize for it. Call it a character flaw if you want, but at this point I am ready to take back everything I said in this blog about letting it go.

    And I didn’t “pull of the endorsement deal of my life.” People gave because they wanted to, because they were kind, generous people who acted to help even though, as you point out, they were strangers. That has nothing to with me. That is a testament to them, to the singularity of their good nature, than a statement on my ability to sell anything. I am and always will be grateful for them. The college students (in general) couldn’t hack it. I have no sympathy for them. Better they know now and change profession. Psychology doesn’t need idiots.

  9. Oh my goodness Laurie
    Laurie and everyone with her opinion…

    Do you really truly believe that out of ALL the doctors and professionals and adults experienced with mental health in children who have actually MET Jani, interviewed her, STUDIED her… It’s really you random know it alls from the internet with NO first hand experience on this child, who have realized that children go through phases somewhat like this?
    Do you honestly think that that wasn’t the FIRST thing that EVERY doctor she has seen has checked off the list? Sheesh. Get real. There is no conspiracy to hurt this girl running through the entire mental health system.

    Note from Michael: Thanks, Rhea. I let those comments go through but I don’t respond to them anymore. It’s like my Dad always says, “Never argue with an idiot. They will just drag you down to their level and then beat you with experience.” 🙂 If she took ANY time to read my blogs then she would see I have answered all those questions over and over and over again. But people like her don’t come here to learn. They come here trying to discredit me for reasons that are beyond me.

    Pop psychology is a dangerous thing. I have even tried to explain Munchausen by Proxy in one of my prior blogs but that fell on deaf ears as well. Munchausen by Proxy is not a mental illness. It is not in the DSM IV, nor will it be in V. “Maunchusen Syndrome” is a real mental illness where people hurt themselves. “Munchausen by Proxy” is a MOTIVE in criminal trials of mothers who have murdered or abused their children (90% are women). It was a leftover from the days when prosecutors needed a motive to convict. They don’t anymore. Now they go by physical evidence. Motive is immaterial to a criminal trial. That is why Casey Anthony was acquitted. They had motive but insufficient physical evidence. But “Munchausen by Proxy” has NEVER been applied to mental health because it assumes you can “cause” a mental illness in a child (and there is no scientific evidence to support this-yes, trauma can exacerbate mental illness but it cannot cause it, at least not in cases of schizophrenia and bipolar). So accusing me of having Munchausen by Proxy and “making Jani ill” for whatever they think I gain from it (they should see my bank account) is like accusing me of being the devil. It is so ridiculous that it wouldn’t even merit defamation of character (because defamation of character requires a slanderous statement that a reasonable person might believe). A reasonable person would not believe this stuff.

  10. As a college student: we will certainly never be able to understand this from the perspective of being Michael and Susan Schofield. But you’re on the battlefield, and we’re back here inside the rest of the world to raise hell for you. Just keep pointing us – bummer about the fundraiser, but there will always be other events that will need your voices. Wishing you and your family the best.

    @Laurie: primetime, madam. You’d make a killing on Comedy Central. Or Nanny911, either way.

  11. Still doesn’t address the issue
    Disparage me as you will, but Michael and his supporters still haven’t answered this: Why make a public spectacle of this child? Why have somebody so young turned into a poster child for a mental health issue? What is the motivation for putting her on Oprah? Did it make it easier to get a book deal? I don’t have a psychology degree or a medical degree but as far as I know neither does Michael nor do the people supporting him on this blog. I’m not alone. There is a lot of concern in the public right now about the over-medicating of children. This story is perhaps the most egregious example of that. It is particularly an issue in the case of poor and foster children, who are being over-medicated and wrongly diagnosed like crazy. Eighteen month olds being diagnosed as bipolar. This is craziness. The medical establishment is not God. There is no reason for me to think that these doctors treating this child are above reproach – and parents have from the beginning of time done awful things to their children. So rather than write me off, why don’t you supporters address the larger questions about drugs and children – as well as the creepiness of making a child who is still very much discovering who she is and in the process of “becoming” into a poster-child for a mental health problem? Doesn’t that seem a bit odd to anybody? What about her right to privacy? Is she old enough to agree to have her personal issues become fodder for Oprah and various other media outlets? Whether you think she is schizophrenic or not, doesn’t it smack of exploitation?

    Note from Michael: Because if no one knew she existed, no one would know about all the other children like her who exist as well. No one would know their fight against their own minds. And if no one knows, then there is no pressure on the system to create resources for these children can live a full, happy life and not wind up homeless, dead, or in jail.

    Does that address your “issue?” No, it doesn’t, because you don’t believe in childhood mental illness at all. Lucky you to have to luxury of not having to believe it.

  12. Fighting the Fight
    In my fight for adults with mental illness to have better lives, my advocacy to help them, I try to use hope. I focus my blogs with hope. But at some point, anger comes to be useful. Try the psychiatrist who no longer wanted to see me because I attempted suicide. This made her angry so she told me my insurance had dropped me and I couldn’t afford to see her. My insurance never dropped me and told me that I was still allowed to go to that clinic and see that psychiatrist. But she would hear none of that. Try the time I was suicidal and another psychiatrist refused to admit me to the hospital because he felt I was bluffing. Obviously I am still here, but the “bluffing” turned into a bunch of cuts up and down my arm. I had to release those feelings somehow and I wasn’t allowed to do it in a safe place. Try the next psychiatrist that decided to stop seeing me after another suicide attempt. He felt that I was too severe and should be seen at the community mental health system. Try the therapist who stopped seeing me after she discovered that I had another “free” therapist through my college. It was against her “ethics” to see someone with two therapists so she simply refused to make appointments with me and never allowed me to see her again. Try my ex-fiance who left me because he didn’t want to deal with me ever having a psychotic episode again. If none of that ignites anger then I’ve got more than just schizophrenia. I couldn’t write my blog or help other adults if there wasn’t some anger brewing in the back of my mind. Anger that the system doesn’t work. Anger that I recently lost a friend because she threatened to strangle me while in the midst of a psychotic episode however none of the area hospitals will admit her even though she is clearly a danger to others. Anger that sometimes, I can’t even find help for myself when I am a danger to myself.

    I know that nearly everyone with a mental illness will go through these things. That angers me. Too many naive people will roll over and take it, not realizing that if they shook some cages they might get better treatment…or at least a much deserved voice.

    Too many people suffer due to this extremely broken system. If some people didn’t get angry about that, it would never change. So don’t be ashamed that you are angry. Just channel it into helping Jani and the tons of other children like her. Make it your fuel. Then try to find hope that your fuel starts a fire. You are making good progress. You’ve at least got a small bonfire because you’ve got people like “warriormom” and Laurie yelling at you. People are paying attention now. You have an audience. Whatever it takes for you to keep that fire burning…do it. Eventually that fire will ignite in the hearts and minds of millions.

    Note from Michael: Katherine, you are wise. I got the anger, and the anger is justified, for all the reasons you just listed. When the system fails because individuals are lazy or scared of us then they deserve to be publicly outed as bad caregivers. What I need to get back to… is the hope, faith that I can still make a difference. People like you help me to regain that. Thank you.

  13. Hope you read this
    I found out about Jani’s story very recently when I stumbled upon a youtube upload from her interview with Oprah. I’ve been reading your blog and I have to admit I’ve become obsessed with Jani’s story. I’ve even had nightmares because of some of the things you talk about. I really feel for her. I haven’t read the entirety of this blog yet (I’m still in 2009) but I wanted to post this comment here in the hopes that you’ll see it.
    When I first started reading this, I have to admit I hated you quite a bit. I read the things about you going into a rage and hurting Honey. I read about you shaking Jani as a baby. I don’t read your blog selectively so of course I knew that you’ve done more good than harm for your family. But I’m not ever going to apologize for thinking that hurting a dog or a baby is despicable. I understand anger problems, and I know people do things in anger that they would never normally do, but that was really bad Michael. Really bad.
    I didn’t comment to criticize though. I just finished reading your entry from 9-28-09 ‘With a little help from my friends’. My respect for you grew 100 fold with that account of your interaction with Becca. I’m not schizophrenic, but I was abused as a child and abused children often feel like they’re “bad kids”, so I understand Becca and Jani’s self-resentment. I’m only 19 so I’m still a kid really, but often times I feel much younger and I hate myself for things I can’t really change or control. I’ve always wished that people could understand why I always feel inherently guilty. So when you told Becca that you would always love her no matter what, it struck a chord with me. I still think shaking a baby and hurting animals is really low. But I can honestly say that I really do respect you now. Peace, love, and prosperity for you, Susan, Jani, Bohdi, and Honey

    Note from Michael: They are pretty low. I’m not going to defend myself on those things.

  14. Thank you for the reply
    Thank you for posting and responding to my earlier comment. I’ve gotten to the end of your blog (or not the end, I guess, but the present) and my respect for you and Susan has grown exponentially from even a few days ago. I don’t really know your kids, but I feel almost like I sort of do, and it’s heartbreaking to read of your family’s struggles. I’m just a poor college kid now but if my music career ever takes off, you can be sure that I will be making an extremely sizable donation, to help Jani and Bohdi when they’re grown. It’s not much and it’s not even for sure gonna happen. But if it does, I will

    Note from Michael: Well, thank you, but forgetting the donation for the moment, what kind of music do you do? I ask because Jani loves music. She has very eclectic tastes that run all the way from Harry Chapin and Cat Stevens to Florence and the Machine and Foster the People and the Red Hot Chili Peppers. I am always trying to expose Jani to new music so if you wanted to share a sample of your work we would love to hear it. You can email us at michaeljohnschofield@me.com.

  15. Misguided Laurie
    This is a message to Laurie and her like…you are absolutely right about children being “diagnosed” way too much lately for ADD etc. Parents are NOT raising their children properly anymore, they rely on video games to babysit, don’t teach them patience by having them WAIT in line at the grocery store but instead let them run rampant through the store, and the biggest issue I have is that parents want their child to have a “diagnosis” because IT RESOLVES THEM OF PARENTAL BLAME. It’s not their fault their kids are maniacs, they have a “diagnosis”. And then of course they blame the teachers that should be able to “raise” these kids as well as teach academically. Ok enough, you get my point here.

    What I’m saying to you is….direct your anger where it is appropriate. And that is NOT HERE. You make some very valid points but they DO NOT apply to the Schofield family. As Michael said, you have the luxury not to have to deal personally with mental illness on this level. Go fight your fight where it belongs, parents groups, schools, but leave this site, it’s not where you should be targeting your anger and wasting your time. I am totally with you about over medicating today, but please, recognize that this family is not the norm of which you speak. They are doing what they can along with PROFESSIONAL DOCTORS to help their daughter.

  16. I got a few more music jobs this December than I thought I would so sent what I could your way. I’ve been following your story since the LA Times article but lost my full time job in 2008 and have just now come into more financial security. Please forgive me for not donating sooner. Please buy your family whatever you need–but maybe add a few just fun things for all of you for under the tree.

  17. I had a few more music jobs than I thought I would during December so am sending a what I can your way. I’ve followed your story since the LA Times article but lost my full time job in 2008 and only now am in a position to give. Please forgive me for not doing so sooner. Of course get whatever you need with the donation but maybe just a few fun things for all of you under the tree? I’d love that.

    Note from Michael: Thank you, Theresa. We are doing fine so I gave your gift to the Boyce family who really need help right now. They have a child with a mental illness and the husband is fighting cancer. I know I should have asked permission but if you would like it back email me at michaeljohnschofield@me.com and I will return it out of my own pocket.

  18. I get you. I’m angry most of the time, it seems. I imagine it’s more envy than anger, actually. Or envy that slowly devolves into anger. I get really jealous of healthy people. It’s not just that they don’t have to constantly pop pills, like I do; it’s because society likes them. Nobody likes me, I think. I’m a worthless schizophrenic. Or, more accurately, I’m only worthy when I’m cute. It’s my last talent. Smile, pose, giggle.

    So I guess I agree; I think anger’s the only relevant emotion. It’s not like pity’s any better. Either way, it’s a red herring. Pity’s useless. Plenty of people pity that homeless guy down the street; few would lift a finger to help him.

    Note from Michael: I have to agree, Tani. I realize that some have to play nice in order to gain money for our cause, which I have no issue with as long as the money goes directly to providing services for children in need. But anger is valuable, as well, because righteous anger is harder to ignore.

  19. Dear Michael,
    Helping the Boyce family is fine by me. And I do know that the good you do will come around to you. In the future I may be able to help further and you and yours will hear from me again I promise. Hang in there-dear ones.

  20. Michael–I trust you to do what you feel the best with any donation. In the future I may be able to help more–and you will hear from me again. I thank you for your inspiration. Love has your name and name of your wife in how you care for your children.

  21. “Righteous indignation” is an emotion for those who have been unjustly treated. I certainly understand that you’re dissatisfied, but I’m puzzled as to where the indignation comes from.

    You understand, of course, that there is no vast System with bottomless pockets backing all the extensive mental-illness services you desire. Every single benefit you’d like the state to provide for Jani, would come out of the pockets of taxpayers who have their own children, their own illnesses, their own budgetary woes. So when you call the system “woefully inadequate” and claim that Society is arraying itself as an enemy of the mentally ill, what you’re saying is that you think the government should take away money I would use to buy books or braces or glasses for my son, and use it instead to buy horse therapy for your daughter.

    You can perhaps make a case for the justice of that if we’re talking basic services– keeping Jani physically safe and well-fed, funding her medication, etc. But you’re not indignant because the state isn’t providing basic services– only because you haven’t received, to the last jot, the equine and gardening and family therapy, the round-the-clock on-demand hospitalizations and in-state, open-door inpatient facilities, that in your (non-professional, untrained) opinion would constitute the gold standard of care for Jani. As far as I can see, there’s not even evidence that most of these services would have any long-term effects on the course of Jani’s schizophrenia (whose basis is still unknown, and probably biochemical, not environmental). So now we’ve arrived at a place where you’re angry because the state refuses to take other people’s money to fund services that you speculate might make your daughter behave better in some vague fashion.

    Lastly, what seem (to an outsider) to have been the two very obvious things your family could have done to better Jani’s situation– simply moving to a state with a nearby inpatient facility, and seeking another job for you besides the very tenuous one of adjunct composition instructor– don’t seem even to have been considered. So now you’re choosing to stay in an extremely low-paid and unstable (but super-flexible, fun and self-esteem-building) line of work rather than seeking less romantic labor that’d help you fund your own childcare. And you’re choosing to remain in a locale you like rather than moving to be near better services in another state. But even though you’ve chosen not to make these sacrifices, you think that other people should be legally compelled to make still more extensive sacrifices on Jani’s behalf?

    I apologize if my tone is immoderate here, but I am honestly confused. What are you angry about? Heartbroken, exhausted, miserable, desperate, sure, but righteously indignant? Who exactly has stolen what from Jani?

  22. Re: Jacob
    Excuse me Jacob, but I’d like to remind you that the Schofields are citizens and do pay taxes. And, as taxpaying citizens they have the right to demand services.
    As for dealing with Jani’s condition, the reasons for the Schofields doing the things they do should be clear to anyone who has read Michael’s blogs.
    You should be aware that Jani is improving every day and making progress both socially and in her schoolwork. Her improvement has been mostly due to the Schofields private efforts, with minimal state support. Private insurance, by the way, pays for much of Jani’s medical services when she needs them.
    Also, those of us who care about Jani also help out through private contributions.
    I’m sorry, but what’s this nonsense about “better services in another state?” Based on what I’ve read about out-of-state residences (which are tax supported, by-the-way), it’s quite probable that Jani’s condition would most likely deteriorate.
    You’re concerned about taxes? Fine. So you should be aware that keeping Jani out of such institutions actually saves the state tax money, if that’s what you are so concerned about.
    Yes, Jani does receive state disability. She also attends special education classes at a local public school. And I’m more than happy to pay taxes for these purposes. As are most people in California, whether they have special needs children or not.
    What you’re basically saying is, that because you are not going to be using certain state services for the benefit of your child, you should not pay any taxes to support children like Jani. I think most people in California would find your POV on this issue totally unacceptable. Your argument would be like me complaining about paying taxes to support public schools, when in fact, I have no children. Which I do not.
    And please don’t use the term “fun” when referring to the kind of life the Schofields lead now, or have have led since Jani’s birth. Things are a little better now, but the Schofields have gone through a ten-year-long purgatory, the likes of which you cannot even imagine!
    “Fun” is really not part of their active vocabulary. Jani even today requires near constant supervision by either one or the other of her parents.
    I guess what I’m saying is: Shut the hell up and don’t comment unless you have some idea of what the Schofields have been through.
    Fun.
    Right.
    You know, Jacob, I can overlook everything else you yapped on about. I can write it off as sheer ignorance. But your use of the word “fun”— Oh, Jacob that REALLY angers me.

  23. Re:Jacob
    the services Michael wants would help everyone with mental illness. The states shut down the majority of state run hospitals before and never replaced them with any adequate mental health services. And while yes the money would come out of your taxes maybe you could think of it as helping others. I live in Canada and we have universal healthcare and we don’t even consider cutting it to lessen taxes because everyone uses it at some point and those who don’t realize that others need it.

    Also from reading jennifer wohlenbergs blog before I believe that if the schofield’s were to leave california they would no longer qualify for the residentials that Jani was accepted to so moving closer to one of those facilities is not possible (unless this has changed she wrote about that back in 2006 I believe). Also moving to another state costs money quite a bit actually.

    Note from Michael: It is a moot point. Jani is never going into a residential because she would not benefit from it. Move or not, I am not going to put Jani in a residential. Jacob appears to have not read many of my blogs and doesn’t seem to know either my feelings on the matter or Jani’s progress (not that that matters-even if she was regressing I still wouldn’t put her in residential-that’s just me). What he does not seem to realize is that this is not just about Jani (he also seems to be unaware of all the children like her). This is about OUR responsibility (meaning ALL of us as a society) to provide a high quality of life to those with mental illness. What he seems to imply is that those with mental illness are not worth the time, effort, and money. Sad that such ideas still exist.

  24. As I have already expressed my opinion on the original blog post, I am just going to bring up a few facts that relate to the comments:

    Munchausen by Proxy: Micheal, as I believe I mentioned once before MBP is, indeed, a real and DSM recognized mental illness; it is just a term used in legal contexts. Well, sort of it. An illness by that name is not included in the DSM; however, the DSM recognizes something called Factitious Disorder, which is essentially an equivalent of Munchausen Syndrome in that it describes someone falsifying symptoms of an illness. The DSM-IV/4 diagnostic criteria is as follows:

    [quote]Factitious Disorder

    A. Intentional production or feigning of physical or psychological signs or symptoms.

    B. The motivation for the behavior is to assume the sick role.

    C. External incentives for the behavior (such as economic gain, avoiding legal responsibility, or improving physical wellbeing, as in Malingering) are absent.[/quote]

    Furthermore, Factitious Disorder By Proxy is acknowledged as existing and coded under Factitious Disorder – NOS:

    [quote]An example is factitious disorder by proxy: the intentional production or feigning of physical or psychological signs or symptoms in another person who is under the individual’s care for the purpose of indirectly assuming the sick role[/quote]

    In the upcoming DSM-5, both will be included under the umbrella term of Factitious Disorder (with the NOS going away), with the by proxy variant being coded and billed as a specifier termed “Factious Disorder Imposed By Another”.

    Source: DSM-IV-TR and http://www.dsm5.org/ProposedRevisions/Pages/FactitiousDisorders.aspx (includes both DSM-5 proposed revisions and older, DSM-IV categories).

    Not trying to spring you — just correcting you. By Proxy does exist as a recognized mental illness, it is real and quite a few children have been hurt by it.

    “Nothing Proves ‘Horse Therapy’ (etc) Is Effective”, aka Ignorant Comments By Those Who Do Not Follow Medical Literature: http://www.medscape.com/viewarticle/743756 and that’s just one. The literature on this is massive.

  25. Carl/Jenny– if you look back over my comment, I think you’ll see that the objectionable word “fun” was used in reference to the job of community-college adjuncting, not to describe the experience of dealing with Jani’s illness (which I agree sounds utterly miserable). Frankly –and I speak from personal experience here– there is no conceivable reason to work as an adjunct English instructor, besides finding it fun and gratifying. The average postgrad-educated person could earn vastly more, and more reliably, as a high-school teacher, as a tutor, as an admin assistant– heck, even as a bank teller– than adjuncting at a community college. It’s cool for a fun second career, but not the line of work I’d expect for someone with a sick child to support.

    Eri, your link to the equine therapy article gets stuck at a paywall, but is there really evidence that these therapies impact the long-term outcomes of childhood schizophrenia? Everything I’ve seen (plus my understanding of the actual disease mechanisms at work) suggest that such interventions might be good for stress relief and short-term symptom management, but not much more (in which case, it’s hard to view as a grave injustice the limited public funding provided for therapies of this sort). Not an expert, though, so would be interested to hear from someone who is.

    Note from Michael: I apologize for the reaction from Jani’s supporters. Understand that they tend to get very angry when they perceive someone spouting off about what we should or should not do when they have proverbially just “walked in the door.” To answer your questions, I am not an adjunct because it is “fun.” Teaching is indeed rewarding but it has become increasingly challenging for me to give my best to my students due to my family issues. What you are missing, though, is why I do it. I don’t do it for the money (obviously) and I don’t do it for the personal gratification of being a positive influence (I hope) in the lives of my students. I do it because it is the only job that gives me full benefits for my family in exchange for teaching only two classes. I am lucky to work for an institution that treats adjuncts better than most universities. We get full benefits, as I said. Yes, I could get that perhaps elsewhere at another institution in another state or in another career, but those would not give me the time that I need to spend with my family. Jani’s stability depends on me (and Susan) being around all the time. I do the job I do because it gives me full benefits and I only have to teach two sections (six units), often which are online. I have explained this before but people seem to miss this. I do not work more, not because I cannot. As you point out, I do have an advanced degree. I do what I do because it is best for my daughter and my family.

    I refuse to move to a state with residential care because I do not want Jani in residential care, nor do I feel she needs it. If you are coming to this after seeing one of the TV specials, you must understand those were two years ago. Jani is much improved. But even if she wasn’t, I would not send her to residential. That is our choice. Why do you think we split into two separate apartments so we could keep Bodhi safe while also keeping Jani with us.

    I think what made others angry at your initial post was the perception in your post that my daughter, and mentally ill children by extension, is worth less than your child. Society owes ME nothing and I don’t think I have ever said anything to that effect. But society DOES owe Jani the right to the most positive and fulfilling life she can have, regardless of the expense. If we do not fight to improve the quality of life for mentally ill children (and the adults they will become) by increasing the resources that will allow them to live the life you and I take for granted, then our society has no moral right to exist. So, to answer your question, do I expect you to spend your hard earned tax money on improving the quality of life for mentally ill children? Damn right, I do, because that is our obligation. If the situation were reversed, I would be fighting for the rights of your child.

  26. Jacob, as research on childhood Schizophrenia and severe mental illness in children is fairly new, there are not a lot of studies relating to the long-term impact of the therapies.

    This particular study, however, was done with adults who were patients in a secure/locked, long-term care facility (keep in mind — the facility is funded by Medicaid); all had a history of violence and were considered to be low-functioning. After a few months of horse therapy, every patient involved in the experimental group improved (as judged by socialization, reduced incidents of violence, reduced incidents of self-injury, etc) and a few were even discharged completely or, at the very least, allowed day passes and to attend events in the local area (with a staff). Those who were discharged, though still requiring support, have not been readmitted. None of the patients have regressed as of the last update.

    Keep in mind that this study was done on those who had been judged to have no ability to function in the community. Given the success rate among that demographic, it is likely that for someone who already can this therapy make the difference, for example, between not having a job/not being able to go to school vs having one/being able to go, living in a group home vs living in supportive housing, etc. Thus, this would actually save money in the long term.

    Knowing what we do about the development of mental illness, especially in children — and development in children in general — it would likely have a stronger impact upon that group, as early intervention (especially in psychosis!) has a significant impact on long-term prognosis.

    Schizophrenia, and mental illness overall, is/are (a) complex disease(s). Psychiatry, over its young history, has swung from extremes — from denying any biology (the mind being separate from the brain) to only considering biology (medication is the only way). Slowly, it is starting to come back and present a more balanced picture. Though everything is linked to the brain, we are finding that (A) medications are not the only thing that changes it (ex, SSRIs and certain types of therapy result in the same neurochemical changes; no follow up study has been done to see which is more long term, if either; therapy along with medication in psychotic disorders results in improved brain function in more areas of the brain than when medication is used alone; etc) and (B) That controlling symptoms is not the only thing that matters — you also have to teach people basic life skills, integrate them into the community, etc. Obviously, medicine and biology is still very, very, *very* important; however, you have the best results when you combine medical, psychosocial, vocational/occupational skills and psychotheraputic techniques (and biology proves this!). Thus, from a scientific standpoint, it is illogical to support paying for medication and not other services.

    And, as I said, when you actually for services, you save money in the long term.

    Cheers,
    Eri

    Note from Michael: Well said, Eri!

  27. Okay, I’m just going to jump right into this thread randomly because it’s late and I’m drunk :0.

    I think the Schofields have every right to be angry and indignant about all the ways society has failed their daughter and other children/adults who fight her battle with her. That’s a given. I’ve always supported their decisions regarding their daughter and I think they know how to handle her situation best because they care more about her than anyone else in this world; she is their child.

    That being said, though, it bothers me a lot that so many people (from both sides of the discussions that go down on here) are using the argument “you don’t know suffering.” Everyone assumes they understand other people and they don’t. The philosophical value of this blog, in my opinion, is that judgment should be set aside and an attempt to understand what you haven’t lived should take priority. Everyone in the world has suffered. It is the human condition. Some have suffered more than others, yes, but “pain is pain,” as Michael himself said in an earlier blog. I thought it was eloquent. Just because someone hasn’t fought the Schofields’ fight does not mean they have not felt pain. Yes, it’s unfair for some random person to come on here and criticize Michael for something they haven’t lived, but it’s also unfair for his supporters to criticize haters for “not knowing pain.” It’s ironic that, on a blog that preaches understanding an acceptance, people attack naysayers with the assumption that they are spoiled, rich and living the high-life. Very few people in this world are “lucky.”

    Nobody should ever assume any other person has it easy. Nobody has it easy, not the Schofields for sure, not the haters, not the interns who tried to help Jani but perhaps had their own battles to fight, not a father worrying about the welfare of his neurotypical child, not even poor Warrior Mom. Give other humans the benefit of the doubt. Attack their arguments. Attack their flaws in logic. Do not attempt to understand things about them that you can’t possibly understand.

    That’s my spiel.

    Oh! And happy late birthday, Bodhi!

    Note from Michael: Well said, Cassie, and a good point for us all to remember.

  28. Jani
    Does Jani have bi-polar disorder too?… If she does.. then the psychosis could come from that…
    What is the difference between Psychosis in bi-polar disorder and psychosis in Schizophrenia?
    THANKS!

    -Teenager

    Note from Michael: No, Jani does not have bi-polar, although during the long process of trying to figure out what was going on that was one of the early diagnoses considered (but never officially adopted). Standard procedure to start with the less severe illnesses (not to minimize the impact of bipolar) and eliminate those first. Autism/Asperger’s was considered first, but those never quite fit. Then “mood disorder Not Otherwise Specified” (which can be a precursor to a diagnosis of bipolar). Then “Psychosis Not Otherwise Specified” to finally “Child Onset Schizophrenia” when everything else had been ruled out. The whole process took about two years, which is fairly standard with psychiatric diagnosis. A good doctor never rushes to diagnosis. They treat the symptoms and then try to figure out a diagnosis based on response of the symptoms to medication.

    As for your other question, psychosis can indeed come from bipolar. It is called “Bipolar with Psychotic Features.” The difference is that the psychosis is triggered by the mood, while with schizophrenia the mood (or lack of one) is triggered by the psychosis. With schizophrenia, psychosis (thought disorder) is the primary symptom while with bipolar the primary symptom is emotionally instability. Sometimes a person can be given a bipolar diagnosis when showing psychosis which, given time and observation, eventually is shifted to schizophrenia if symptoms continue to deteriorate without responding to bipolar meds. But they are two separate illnesses.

  29. I oppose your argument that NAMI is not important. We fight for mental health care daily. We talk to senetors and we run support groups for familys and consumers that are confused, lonley, sick or just need a friend. I am a trained facilitator and though it is often difficult and no I am not a liscenced person, I am able to offer coping skills to get through the night or to be a friend to keep you safe. We are a group of people who care for each other and as a person diagnosed as schizoaffective, NAMI has saved my life more than once. The education I have recieved has helped me to understand myself, my illness and how to cope with it better. Since then I have went from multiple hospitalizations to being a person to help support.
    ALSO, NAMI has people who are trained in many things. There are peer support specialist who are people who get it because we have been there, who work with people to help towards recovery along side therapists and psychologists.
    I will not ask you to recant about NAMI’s uselessness, but you need to realize we do what we can in our community where the goverment is failing us. We fight the goverment for mental health care coverage every year and ya know what… sometimes it works. We try to be there for people who have no one and we encourage people to seek professional help if they need it. We give them a chance to talk. A chance to meet people like them. A place that saves alot of people’s lives just by someone being there who understands.

    I support you and your fight for better mental health care because I had to go hours away to get real help when there is a ward 10 minutes from me. It sucks. I am sorry your family has such trials. I wish her all the wellness in the world.

    Being rude to other orginizations that may be a persons only hope truley hurts though. Think about others. ALSO, There are alot of factors that work into a mental illness.

    In Kentucky we have what is called a 401K. We rally with senators and other influintual people in our state capital. Because of this we were able to get more funding for the state mental hospital on our end and keep what little funding we have that they planed to majorly cut!

    NAMI CAN MOVE MOUNTAINS! YOU JUST HAVE TO WORK IT!

    Theresa.

  30. The problems you are dealing with go to the root of society and extend far beyond the mental health system.

    People with children with autism make the same complaints about special education. Government agencies neglect their children’s development and resist families’ attempts to intervene because it does not fit into the bureaucratic formula. My previous supervisor had to take off work repeatedly to get the counselling and individual attention his autistic child needed to progress.

    Then there is homelessness. We have a huge population of mentally ill, disabled and elderly people falling through society’s cracks, discarded in the streets.

  31. And then there is lack of social support networks and awareness. Most people do not know what mental illness really is, especially schizophrenia. Many families quickly give up on mentally ill siblings and abandon them to the system.

    In short, we live in a materialistic, bureaucratic society with weak social support networks. Raising awareness about social issues affecting most families and mobilizing appropriate resources will be very difficult. You are not just dealing with mental illness; you are looking at who we are as a society.