It's 200 degrees in Calalini...

August 26, 2009 7:18 AM

Only six years old, January Schofield is severely schizophrenic, actively hallucinating and violent. An LA Times article in June and a follow-up in July describe her parents' attempts to get help for her. Her father also has a blog.

Brutal, unflinching, and often angry, he describes his family's difficulties obtaining help from insurance, the lack of state services, family members who are unable or unwilling to understand, the need for mental
health parity, and a seldom-discussed issue common to parents of children with mental illness: multiple investigations from the Department of Children and Family Services (including a visit provoked by out of state anti-psychiatry advocates who reported him as an abuser after reading the blog).

Some of his most compelling and unsparing writing, however, is directed at himself, his own family history of mental illness, and his own struggles with anger and depression.

posted by infinitywaltz (123 comments total)

I meant to add that it was originally a comment by Scody that led me to the story.
posted by infinitywaltz at 7:29 AM on August 26 [2 favorites has favorites]

So recently I got a puppy. Well, not really I - my girlfriend and I decided to get a puppy. We have a couple cats, so we decided, you know, hey, how much harder can it be? It turns out, obviously, that it can be a lot harder. In retrospect, this is one of those "DUH!" moments. Obviously a puppy is a lot more work than a kitten, and more over, we should have done our research and been prepared for that fact - but we weren't, we were largely negligent.

Anyway, long story short - it's a tremendous amount of work. Can't leave the puppy alone. Must engage the puppy. Must train the puppy. Must always be with puppy. Must listen to puppy cry when puppy is in crate. Must wake up at all hours to take puppy outside. Again, everyone else in the universe is going, "DUH!"

Honestly, it's starting to wear on us. I mean, we're stressed out, and we're starting to yell at each other and fight and I'm sure, in time, it will get better, but right now it's kind of awful. Sometimes I find myself staying late at work just so I don't necessarily have to come home and right away be confronted by the puppy. I can have some peace.

I started to read January's father's blog and I realized - I mean, I guess I already knew, but, seriously - my problems aren't a hill of beans. His description of doing something simple, like trying to talk on the phone, honestly made me ache. I don't know that I would ever, never be strong enough to endure what they must go through on a constant basis. I mean, maybe I would - maybe when you have a kid you form a connection and you can make those kind of sacrifices more easily, but the kind of shit he describes? I don't know. I don't know. I don't know how a person could deal with it morning, noon, and night and I really don't know how a relationship could survive it.

I feel tremendously sorry for everyone involved.
posted by kbanas at 7:38 AM on August 26 [4 favorites has favorites]

Such a saddening story.

.
posted by RussHy at 7:42 AM on August 26

Holy mother of G*d. How do they persevere?
posted by Devils Rancher at 8:00 AM on August 26

I once watched a family member going through a nervous breakdown, and I watched another family member laugh at the first person's state of mind. Years later, when my brother's best friend had a psychotic episode, this same family member greeted it with disbelief. "Aw, he just needs to get a grip. He's just looking for attention."

Some people just don't understand that the sickness is real. It is beyond the person's control. It is painful.

The scariest part of watching a relative suffer a mental breakdown, for me at least, was seeing myself in them: knowing I carry some of those same genes, knowing I sometimes have those same nervous habits or think irrational thoughts (though never aloud) that they displayed so plainly during their episode.

A great post, albeit disturbing.
posted by Brodiggitty at 8:00 AM on August 26 [1 favorite has favorites]

I started reading Schofield's blog after Scody's comment pointed me to it. Three days later, when i couldn't sleep and couldn't stop crying, I stopped reading it. This passage, though, has stuck with me:

I wish, I wish, I wish I could take it into me, like Father Karras in the Exorcist. I wish I could free Janni like Regan. I wish life was like a Hollywood movie where the good guy can sacrifice for the greater good, killing himself but also taking the bad guy with him. I wish I could rip the schizophrenia out of Janni and strangle it in my bare hands, bashing its head open. But its head is my daughter's head. My precious daughter's head. Her head is killing her and I can't do a fucking thing to stop it.

God, I am afraid. Don't take her from me. Please.

I hate myself for being unable to even read about this family's pain, and I am ashamed of how horribly our society has failed this six year old child.

One question that continues to gnaw at me is the level of genius that is locked inside Janni's tortured brain. Her mind works in ways so far beyond our understanding, what incredible gifts could she offer the world if we could only free her from her demons? If we could stop 400 the cat from telling her to jump from windows, what would the child whose favorite element is Tungsten be able to tell us?

Or, more sickening still, is it her genius that has poisoned her mind? Are her brilliance and her suffering inextricably linked? How many Einsteins are sitting on the sidewalks of Midtown, holding out a paper coffee cup, asking for my change? Would that I had more change to offer them than coins.
posted by philotes at 8:07 AM on August 26 [25 favorites has favorites]

Brutal, unflinching, and often angry, he describes his family's difficulties obtaining help from insurance....

I want to print out that entry and make copies and mail them to each and every one of the people who is opposed to health care reform.
posted by EmpressCallipygos at 8:08 AM on August 26 [12 favorites has favorites]

Simply heartbreaking. God bless those parents.
posted by VicNebulous at 8:10 AM on August 26

Her mind works in ways so far beyond our understanding, what incredible gifts could she offer the world if we could only free her from her demons?

These are my thoughts exactly. I can only hope that the "experimental" care her parents are giving her (attention, love and understanding) can prove at least part of this key. So many have decided not to look in this direction anymore.
posted by setanor at 8:20 AM on August 26

I find it pretty stunning that parents are simply expected to be able to take care of and handle a severely schizophrenic child. One thing that civilization has frequently accounted for has been the support of a cadre of professionals that know how to handle the severely mentally ill.

When a child has appendicitis, we don't expect parents to teach themselves how to administer anaesthesia and perform surgery on their child. When a child is a musical prodigy, we don't expect the parents to train themselves to teach their child piano concertos. In both cases, a professional handles it. However, when a child has an uncontrollable, intractable mental illness, the expectation is that the parents are supposed to be the long term caregivers.
posted by deanc at 8:23 AM on August 26 [29 favorites has favorites]

It's fascinating that all of her hallucinations seem to involve numbers. Her friends 24 Hours and 100 Degrees, 400 the cat, 200 the rat, Magical 61 the cat... I instinctively want it to mean something.
posted by rusty at 8:23 AM on August 26 [3 favorites has favorites]

Wow -- I really admire these parents for doing what I don't think I'd be capable of. But I can't help but think the rage at his in-laws is misdirected. I kind of felt bad for Andy.
posted by M.C. Lo-Carb! at 8:24 AM on August 26 [1 favorite has favorites]

And yet, some will look at their travails and applaud them as icons of All-American perseverance and self-sufficiency. Shining beacons of the "git-r-dun" spirit. Heroes of the American free-market.

Until the family falls apart and succumbs. Then they'll be losers who didn't plan ahead.
posted by Thorzdad at 8:26 AM on August 26 [2 favorites has favorites]

I wish, I wish, I wish I could take it into me...

This is an incredibly common desire of loved ones for those with illnesses, it doesn't diminish his desire, merely he taps into something universal.

I have read that the biggest facility for people with mental illness are the prisons, specifically the California prison system. So many of our societal ills are interlocking.
posted by edgeways at 8:27 AM on August 26 [1 favorite has favorites]

The principal called the Los Angeles County Sheriff's Department and reported that the parents had abandoned their misbehaving child. Three school psychologists were summoned by the assistant principal, and a sheriff's deputy called for a team of emergency psychiatric workers.

This is a sad truth of the system. The ONLY way a mentally ill person is guaranteed treatment is if they get arrested. When it's a child, the parents have to either 'abandon' them or sign them over to state care.

That's just not right.
posted by grounded at 8:28 AM on August 26 [3 favorites has favorites]

Fuck, that's heart-breaking. I can't imagine what it is like to live in her "other world".
posted by kimdog at 8:28 AM on August 26 [2 favorites has favorites]

I want to print out that entry and make copies and mail them to each and every one of the people who is opposed to health care reform.

My older brother is a self-described "fiscal conservative." He's also extremely intelligent, and he debates issues with me via email very amicably, which gives me hope that eventually he will come around.

Back when I discovered Schofield's blog I forwarded passages to my brother as part of a dialogue on healthcare reform. For the next several days I checked my email frequently, expecting his well-intentioned, well stated, but inevitably flawed rebuttal. I was armed with further evidence to respond.

The rebuttal never came. He hasn't addressed political issues with me since. It's been two months. I believe it will take him a while - he'll make an effort to find anything that will show that a private healthcare system would be better for Janni and people like her than government options - but eventually I think he'll concede.

Unfortunately, I also believe my brother is not the most common type of conservative - he is compassionate, thoughtful, and [mostly] logical. I believe the conclusions he's formed on the issues have been biased by a wealth of conservative influence and a dearth of reasoned liberal argument. Janni's story will touch him and change him. I don't believe such change is possible for those who believe in "death panels" and carry their guns to town hall meetings. I'm afraid your mass mailing would benefit very few. But I'll offer to lick the envelopes anyway.
posted by philotes at 8:29 AM on August 26 [11 favorites has favorites]

And yet, some will look at their travails and applaud them as icons of All-American perseverance and self-sufficiency. Shining beacons of the "git-r-dun" spirit. Heroes of the American free-market.

To be clear, I think they can be applauded based on things other than this.

One thing that civilization has frequently accounted for has been the support of a cadre of professionals that know how to handle the severely mentally ill.

Yeah, that always works out really well.
posted by setanor at 8:32 AM on August 26

Yeah, that always works out really well.

Excuse me, setanor, I'm not always good with figuring out what glib one-liners are supposed to mean, can you elaborate?

In case you couldn't understand what I was trying to say, the point is that this is a problem that we (typically) know isn't capable of being handled by average people just working a little harder in concert with the magic of the free market.

Thousands of people die from poor drug interactions every year, too. I'm not going to say, "well, that whole 'health care via doctors and pharmacists' thing doesn't work!"
posted by deanc at 8:39 AM on August 26

Excuse me, setanor, I'm not always good with figuring out what glib one-liners are supposed to mean, can you elaborate?

Not glib at all, I just wanted to make clear I think there's a difference between "rah rah git-r-done" support for these parents and wanting to commend them for making the costly decision to support and understand their daughter in a way that only they would have ever have been able to.
posted by setanor at 8:44 AM on August 26

setanor, I think your statements can be seen as another reflection of the naive idea that mental illness isn't really an "illness" but rather something that just requires patience and understanding on the part of the parents to deal with. That's not actually true at all, any more than they should be expected to figure out how to treat MS or congenital heart defects.
posted by deanc at 8:50 AM on August 26 [2 favorites has favorites]

Jani's story, which I've been following for awhile, breaks my heart.
posted by zizzle at 8:51 AM on August 26

Reading this just hurts. One of the most important things you can do as someone supporting a mentally ill person is to get them to the point where they can understand that they need to take care of themself, to let them take on some of the responsibility. It doesn't mean leaving them afloat, since you still are there as a support network, and if need be, someone to intervene in an emergency. Some people will never reach this point, others will not take responsibility for their illness until it's sunk in how serious it is, but that point exists.

With a kid like Jani, there's no way to reach that point. If she was an adult with the same condition it still might not be possible, but with a child, the parents are responsible for their care and treatment. There's no way to really get a break for them, outside of giving up their parental rights completely. They're always going to be on the hook for something. That kills me.
posted by mikeh at 8:56 AM on August 26

setanor, I think your statements can be seen as another reflection of the naive idea that mental illness isn't really an "illness" but rather something that just requires patience and understanding on the part of the parents to deal with.

Actually, no. What I think is that too often those afflicted with mental illness are left to be handled completely by others when it seems no more can be done, rather than continuing to receive patience and understanding in concert with proven treatments. Reading more about this specific instance, it seems that it's swayed too far in the other direction - they have indeed taken on more than they should ever be expected.
posted by setanor at 9:01 AM on August 26

My point is mainly in service of appreciating the parents resistance towards the DCFS "send 'er to Texas so we can tie 'er down and you won't have to deal with it" hardline. She should, but won't, receive all pertinent care and attention in an environment where she can also receive patience and understanding from her able and willing parents.
posted by setanor at 9:05 AM on August 26

I have read that the biggest facility for people with mental illness are the prisons, specifically the California prison system. So many of our societal ills are interlocking.

that's most likely true, and in no small part the legacy of the Community Mental Health Act of 1963. rather than overhaul a badly degenerated, tremendously underfunded, but vitally necessary mental health system, the bill provided for community-based care which was never even marginally realized in real life.

all due respect to mental health professionals everywhere, but what we have now is not even close to enough. my own very humble opinion: this is where universal health care should start, and it needs to start NOW. there are too many january scholfields in the world, and others with less dramatic stories, but letahal consequences, that fall through the cracks.
posted by msconduct at 9:05 AM on August 26 [2 favorites has favorites]

Hearing about her medication regimen makes me shiver. There are a some cutting-edge, fairly recently developed, very commonly prescribed anti-psychotics with fairly typical side effects. And when those don't work, they start throwing whatever they can at you. These are typically very blunt, heavy, clumsy drugs that effect your body as well as your mind.

When I was a teenager, my Tourette Syndrome was a lot worse and they kept trying different anti-psychotics on me. It seemed every new prescription was a "well, this is our last resort," until it turned out to not work and we tried something worse.

Going through puberty while on One Flew Over The Cuckoo's next style psychotropic drugs from the seventies that made me pass out drooling on people's couches, vomit everything I ate, and carried warnings of possible "sudden death" was horrible. I can only imagine what it's like for a six year old.

I'm not anti-medication. Lord knows, if anyone needs psychiatric medication, it's Jani. But I shudder to think of such heavy doses of such extreme drugs in such a tiny body. The poor dear.
posted by Juliet Banana at 9:19 AM on August 26 [11 favorites has favorites]

"So many people just thought we had a bratty kid," says Michael, feeding Bodhi as he squirms in a high chair in the restaurant. "UCLA was the first to tell us: 'It's not your fault -- there is something wrong with her brain.' "

This was after some doctor put her on Haldol? That was just for the brattiness, then?
posted by StickyCarpet at 9:21 AM on August 26 [3 favorites has favorites]

It's fascinating that all of her hallucinations seem to involve numbers. Her friends 24 Hours and 100 Degrees, 400 the cat, 200 the rat, Magical 61 the cat... I instinctively want it to mean something.

I don't know much about child schizophrenia, but the first thing I thought of when I read that was synesthesia. People who experience synesthesia tend to develop it at a young age, when they first learn letters and numbers, and for whatever reason their brains map extra information (color, space, taste, etc.) onto those letters and numbers. For example, people who associate tastes with words generally only do so with tastes they experienced as a child. It seems like she's doing the same thing, only by mapping her hallucinations to things like numbers and the days of the week.
posted by burnmp3s at 9:21 AM on August 26 [1 favorite has favorites]

His mom was schizophrenic, his daughter is a brittle, unmanageable psychotic, he knows that mental illnesses run in families- why on earth did these people choose to have another child?
posted by ethnomethodologist at 9:29 AM on August 26 [14 favorites has favorites]

I have read that the biggest facility for people with mental illness are the prisons, specifically the California prison system.

The California Medical Facility at Vacaville holds over 3000 patients, many of whom are psych patient. However, the Riker's Island jail complex -- which holds 14,000 patients total (a huge percentage of whom are mentally ill) -- is usually considered the largest psychiatric facility in the US.

But again, the only way a mentally ill person is guaranteed treatment in the US is if they get arrested. And the families and support networks of the mentally ill are well aware of this, as are EMS services and law enforcement. So families will often call the police with the aim of getting their loved one into custody -- either by a 5150 or an outright arrest. It just sucks.
posted by grounded at 9:33 AM on August 26

the first thing I thought of when I read that was synesthesia

That's a stretch, burnmp3s. One of the defining aspects of synesthesia is that it's very stable. The mapping is always the same, throughout a lifetime, and the phantom perceptions are brought forth in consistent pairings with real word stimuli. Certainly these perceptions don't command people to do things, or fill consciousness without the associated trigger calling them up.
posted by StickyCarpet at 9:40 AM on August 26 [1 favorite has favorites]

heartbreaking.
posted by glaucon at 9:41 AM on August 26

why on earth did these people choose to have another child?

Actually, they did it for Janni. She describes people with numbers, and she'd say "I'm a 17, [this other child you've tried to get me to play with] is a 13." (I'm paraphrasing wildly.) And she was desperately lonely, dying for someone who spoke on her level. Another "17" who would understand her. Her parents conceived Bodhi partially in the hopes that January would have someone who spoke her language. (Not that they were hoping he'd be schizophrenic - certainly not - but rather that the sibling bond would enable their children to communicate on a level January was incapable of reaching with other kids.) It didn't work out so well, of course, but can you really blame them for trying?
posted by philotes at 9:43 AM on August 26 [1 favorite has favorites]

His mom was schizophrenic, his daughter is a brittle, unmanageable psychotic, he knows that mental illnesses run in families- why on earth did these people choose to have another child?

From the latest entry on his blog, with fairly brutal plain honesty:

Bodhi, in truth, was conceived as a last ditch effort to bring our daughter back from her increasing isolation, from the thing that was slowly taking her from us but for which we didn’t yet have a name.

Jani was so excited about the new baby. Susan and I actually believed that this might be the ticket to keeping Jani in our world.

And so poor Bodhi was saddled with expectations right from the beginning. Just like a second child conceived to provide an bone marrow match for an older sibling, Bodhi was conceived to save his sister’s mind and hold it in our world. He was conceived to make his sister happy, to give her something in our world that could make her happy.

The entire story's a kind of godawful fractal heartbreak--no matter how you zoom into it, every piece contains just as much heartbreak as a wider view.
posted by Drastic at 9:45 AM on August 26 [27 favorites has favorites]

One of the defining aspects of synesthesia is that it's very stable. The mapping is always the same, throughout a lifetime, and the phantom perceptions are brought forth in consistent pairings with real word stimuli.

Does synesthesia ever go away with aging? I used to experience it (words and numbers mapped to colors) when I was a kid, and I don't now.
posted by infinitywaltz at 9:47 AM on August 26

His mom was schizophrenic, his daughter is a brittle, unmanageable psychotic, he knows that mental illnesses run in families- why on earth did these people choose to have another child?

I understand your concern, but I think I'm going to refrain from taking even one step down the path of second-guessing who should and shouldn't reproduce.
posted by Pater Aletheias at 9:50 AM on August 26 [16 favorites has favorites]

Heartbreaking.

What worries me is that while the parents are extremely admirable for the degree to which they keep Jani (and Bodhi) engaged, the whole ordeal is thoroughly exhausting and if they reach a breaking point -- what, then?
posted by Lush at 9:51 AM on August 26

That's a stretch, burnmp3s. One of the defining aspects of synesthesia is that it's very stable. The mapping is always the same, throughout a lifetime, and the phantom perceptions are brought forth in consistent pairings with real word stimuli.

Yeah, to be clear, I didn't mean to suggest that this is an actual case of synesthesia. What I meant was that I thought a child developing synesthesia might map things onto numbers for the same sorts of reasons that a child with schizophrenia might do the same thing (as opposed to an adult with schizophrenia). And of course this is a theory that I made up based on very little information with no scientific basis, so there could be some completely different explanation for her fixation on numbers.
posted by burnmp3s at 9:53 AM on August 26 [1 favorite has favorites]

She describes people with numbers, and she'd say "I'm a 17, [this other child you've tried to get me to play with] is a 13." (I'm paraphrasing wildly.) And she was desperately lonely, dying for someone who spoke on her level. Another "17" who would understand her.

Okay, now that totally does sound like a specific form of synesthesia.
posted by burnmp3s at 9:57 AM on August 26 [1 favorite has favorites]

Bodhi, in truth, was conceived as a last ditch effort to bring our daughter back from her increasing isolation, from the thing that was slowly taking her from us but for which we didn’t yet have a name.

That is worse than telling your child they were a mistake. Christ.
posted by adamdschneider at 9:57 AM on August 26 [6 favorites has favorites]

The family needs to get legal representation in dealing with the various government agencies. School districts are sued for services for issues that are frivolous compared to this. Regrettably, it's part of the system.
posted by Edward L at 9:59 AM on August 26

What happens to the majority of the severely mentally ill in the prison system in my opinion is not nor should be referred to as treatment. The goal of dealing with the severely mentally ill in the prison system is not to help the person manage their symptoms and acheive the highest level of functioning. The goal on prison mental health units is simply to control behavior. This is a major problem for people working in community mental health settings encountering new clients having their first encounter with community mental health treatment. The only previous exposure to mental health professionals some of these new clients have had are inside the prison system, where they were primarily dosed with Thorzaine and kept in restraints. You can imagine how it colors their expectations for how they will be treated within the community treatment system. It's not surprising that many are so suspicious of the mental health system in general, and refuse to engage with it.

As far as Jani's story goes...I don't mean to sound callous but her parents have managed to advocate for her to receive a lot of care and attention compared to your average Medicaid funded consumer suffering from schizophrenia. And her parents at least understand the disorder and are willing to seek out treatment for their child, as opposed to some clients I've had whose parents have practically chased us off the property because their 42 year old child who hasn't left the house in the last 10 years just needs go to church and get more Jesus. So at least thank god for that, I guess.
posted by The Straightener at 10:00 AM on August 26 [2 favorites has favorites]

Tangent on things synesthesia, the latest Radio Lab short makes passing reference to the likelihood that, in normal early childhood/infancy brain development, things are synesthetic more often than not, until the brain 'figures out' how to filter and divide things better. (Other neat bit that stuck with me but much more parenthetical, that often when babies get that total stare-lock thing going on, it may often be due to different bits of the developing brain fighting over gaze control.)
posted by Drastic at 10:02 AM on August 26 [2 favorites has favorites]

Tangent on things synesthesia, the latest Radio Lab short makes passing reference to the likelihood that, in normal early childhood/infancy brain development, things are synesthetic more often than not, until the brain 'figures out' how to filter and divide things better.

That makes a lot of sense and seems to fit with my own experiences.
posted by infinitywaltz at 10:05 AM on August 26 [1 favorite has favorites]

That is worse than telling your child they were a mistake. Christ.

I don't think so. I see how it could be disturbing to Bodhi later in his life, how he might feel like he'd failed to do what he'd been literally born to do, but I hope that he will see it in the full light of all of his parents' actions and know that he was conceived in love. After all, when Janni didn't relate to Bodhi and instead started trying to hurt him, his parents had her committed to keep him safe. And when their health insurance refused to allow her to stay in the hospital, they got two apartments in the same complex so that Bodhi & January both would have a safe home. They may have brought Bodhi into the world for Janni's sake, but now that he's here they love him just as much as they love her, and they do everything they can to give him as normal a childhood as possible.

Honestly, I think these parents make a lot of mistakes. Michael Schofield admits them all very bluntly in his blog. But I find it impossible to judge them. Drastic's phrase "fractal heartbreak" is so fitting.

If your daughter were being tortured, and someone told you that it might be possible for you to relieve some of her pain if you had another child, would you say no?
posted by philotes at 10:28 AM on August 26 [4 favorites has favorites]

Bodhi, in truth, was conceived as a last ditch effort to bring our daughter back from her increasing isolation, from the thing that was slowly taking her from us but for which we didn’t yet have a name.

That is worse than telling your child they were a mistake. Christ.

"I wonder if we had known then that Jani was schizophrenic, would we have had Bodhi? And that is what makes me feel guilty."

...

"For those of you who do not have mentally ill children, I am counting on you to teach your children to show kindness to the homeless and the crazy lady on the street, because that crazy lady might just be my daughter."

Amen.

I'm not anti-medication. Lord knows, if anyone needs psychiatric medication, it's Jani. But I shudder to think of such heavy doses of such extreme drugs in such a tiny body. The poor dear.

I was going to suggest LSD. I would search out a therapist who would try it, and if not, do it myself.

"One might summarize by saying that autistic schizophrenic or brain-damaged children when treated with LSD are less anxious, less autistic, less plastic, tend to relate better and in general to act like more concrete, less disturbed, retarded children." - Bender, 1966

A heartbreaking story, nonetheless. My heart goes out to the whole family.

"I'm prepared to go the rest of my life like this," Michael says. "I'm not hanging on to the hope that she'll get better. My biggest fear is that she won't live to 18."

"I have more hope," Susan says softly, staring at the floor.
posted by mrgrimm at 10:30 AM on August 26 [2 favorites has favorites]

Seconding everybody else whose mind is blown by the Bodhi situation. There really is just nothing good about it at all. I clicked the 'reported as an abuser' link thinking it would be about removing HIM. He is stuck with parents who literally only have enough attention left to keep him from being violently attacked by too badly by his psychotic sister, sometimes for things she only imagines he might do. I want to make clear that I understand, as much as an ignorant Internet bystander like myself can, that this is just the position they are in, and through no fault of their own (I believe the post said Jani's issues weren't yet diagnosed as schizophrenia, meaning they didn't exactly knowingly do this to the kid). But-- and I say this merely as commentary, not with the expectation that anyone hear my wisdom and obey-- if you are that parent, let someone else be his parent. "He deserves better" does not even begin to cover it.
posted by jinjo at 10:34 AM on August 26 [7 favorites has favorites]

The family needs to get legal representation in dealing with the various government agencies. School districts are sued for services for issues that are frivolous compared to this. Regrettably, it's part of the system.

They did have a lawyer advocate to deal with the various government agencies. The lawyer advocate person couldn't do anything. The services the government agencies provide are not services effective in assisting children with psychotic disorders.

The school system, in their case, and the UCLA hospital are the only places that have provided any type of real service to Jani.

I really hope that Michael makes a blog post that just lists all the services they have been offered and have met with who turned around and said they didn't have the means or the training or the whatever to take Jani on. They can't even get respite care because no respite care workers are trained in dealing with psychotic disorders and for very good reason, Susan and Michael aren't keen on trusting anyone except their one really good Zen-like friend to care for Jani.

But the real issue is --- there just aren't services period for children with severe psychotic disorders. It's an area that simply isn't explored, so while many of these same services are able to deal with severe versions of ADHD, sensory processing disorders, low-end functioning autism, or even behavioral disorders like opposition defiance, when it comes down to a clearly bright, intelligent kid who is affectionate and caring when in a lucid state but who also happens to have to fight the workings of her own mind ---- there aren't services.

The entire blog is about raising the awareness of this critical lack of services and research in this area.
posted by zizzle at 10:42 AM on August 26 [2 favorites has favorites]

Her parents conceived Bodhi partially in the hopes that January would have someone who spoke her language.

I am all about this post, this blog, these people. Seriously, devastating and amazing.

Nevertheless, that is so fucked up.
posted by hermitosis at 10:45 AM on August 26 [6 favorites has favorites]

zizzle: are you suggesting that there ARE services for adults with severe psychotic disorders?
posted by msconduct at 10:51 AM on August 26 [1 favorite has favorites]

There are services for adults, yes. Here's one. Are they terrific? Do they serve everyone who needs to be served? Of course not. But they do exist.

There was a case a few years ago here in the Bay Area where a teenaged girl attacked a woman on street - cut her throat (the woman survived). The girl was found to be profoundly mentally disturbed. I've lost track of what happened, but for months and months the court looked for an inpatient facility for her - she was clearly too mentally disturbed to stand trial - and there weren't any that could or would take a girl her age.
posted by rtha at 11:00 AM on August 26

A well-medicated schizophrenic who is not too far down the path can often "pass" in casual conversation. Trying to help an adult schizophrenic write an essay, though, can reveal the disordered manner in which one thought comes after another on a bad day. The connections, well, many connections people make can be tangential, but often in schizophrenics those connections would be formed through focus on a trivial word in the previous idea. Sometimes the lines you could draw between the sentences (and often within them) would resemble a hastily-made spider web.

When his medication failed him (or the other way around), he would have episodes he would be unable to remember consisting of, say, driving to his parents' house in his underwear in a snowstorm, or coming out of it all with a severely broken nose without explanation. (After many months of therapy, he was able to recall that one bit out of his fugues — repeatedly slamming his face against the inside of a doorway)

After a few clients like this, some trends come swimming up at you. As far as I can tell, that slight remove at which schizophrenics hold themselves in conversation, with just an extra moment or two of processing, is because they live in a world which is deeply confusing, both inside and out. It's a look of someone desperately scrabbling for comprehension and trying to fake it, with perhaps not suspicion, but a mistrust of both their senses and the workings of the world as presented. In some, the demeanor is obvious, reminiscent of a person trying to decide to leave a cave or hunker within it, no matter how miserable it might be inside. It sounds as if this little girl has never quite made it to the edge of the cave in the whole of her life, even with her parents standing outside, trying to coax her out, and perhaps even slipping in a bit.

A relative of mine was eventually diagnosed as deeply and profoundly schizophrenic. Her remaining friends and close family had just written it all off as her personality, as familiarity breeds contempt for psychiatric symptoms, but as a small child with infrequent contact with her, I knew that something about her was different, something which prompted an instinctual caution which came in the same category as "kids who are being overly nice so they can set you up for a trick," just that broad hole children shovel things in, with a sign over it that says "You Have to Play Like There's Nothing Wrong Here" despite how scary it looks. She was later committed.

The hole is probably a lot scarier from the inside.
posted by adipocere at 11:15 AM on August 26 [12 favorites has favorites]

Video interview
posted by k8t at 12:29 PM on August 26 [1 favorite has favorites]

The point is that we have both reached the point where we are counting the years until the psychic Sylvia Brown said we would die.

what?
posted by anazgnos at 12:33 PM on August 26

hermitosis, I'm not suggesting there are services as I would consider them to be for adults, but it does seem that more options for adults with these types of disorders --- provided there is a willingness on the part of the adult to go through with them --- exist.

I have a relative whose severe disorder came on relatively late (in her 30s as opposed to 20s but was manageable until a breakdown in her 40s). My family was put through all heck and hell in just knowing where she was at any given minute and she managed to get herself from the midwest to the southwest and back again and no one knows how (and it seems unlikely she even remembers). But eventually, eventually, eventually she was stabilized in a hospital (which is what UCLA is able to do for Jani, or at least, try to do when BCBS doesn't screw them over), sent back to her family who were waiting with baited breath, given by the STATE GOVERNMENT a caseworker, a social worker, a therapist, a psychiatrist, and meds that, in her case, worked. She's been stable going on five years without any slips, though she will never lead a fully functioning adult life --- she's incredibly dependent socially (I imagine it's part of her way of dealing with her severe disorder). She still uses the therapist and psychiatrist and group therapy supplied by the STATE GOVERNMENT for people with her disorder to help her manage it. And she's gotten better enough that she can sense when something isn't quite right that may involve a med adjustment.

Point is, there are studies done on severe disorders in adults. There are therapists, psychiatrists, social workers trained to handle adults with those disorders --- adults with severe disorders that didn't form until adulthood don't have interrupted development like Jani, which I think can be a huge plus for adults with disorders --- and other services that are available, though perhaps flawed and perhaps limited. In my relative's case, she was able to get what she needed with her severe disorder that involved some really crazy delusions (as opposed to hallucinations). And I really do think that having normal development prior to my relative's disorder coming to light had a lot to do with how well she is doing now.

But I don't think that if my relative had been in Jani's situation --- had been 7 or 8 or 10 when her disorder developed instead of 30+ --- that the services she received would have been available.
posted by zizzle at 12:37 PM on August 26

Ack! I meant msconduct.
posted by zizzle at 12:38 PM on August 26

The LA Times article reminds me a lot of the memoir written by Deborah Spungen about her daughter Nancy, who was once diagnosed as a schizophrenic and also as a lot of other things. Same uncontrollable violence, same apparent helplessness on the part of plenty of MH professionals, even including a charge of "inadequate parenting." And similar problems trying to find residential treatment for a young child. The Spungens' ordeal took place in the 60s and 70s. Could it be that not much has changed in the 30-odd years since then?

Irrelevant aside: That one-sentence-per-paragraph business is really, really annoying.

I'd love to find out who invented it and give them a piece of my mind.


posted by scratch at 12:54 PM on August 26 [1 favorite has favorites]

This is kinda weird:

"If I had really hit Jani in “impotent rage,” given that I am a fully-grown man, don’t you think that one of those HUNDREDS of people who have Jani day in and day out over the last two and a half years would have NOTICED something? UNLESS....all those people and all those agencies and all those facilities are working together in a grand conspiracy to conceal Jani’s abuse.

Which, by the way, was basically what we and UCLA were accused of. You see, this person or persons (or maybe a certain “church” that many celebrities belong to that has a history of an irrational hatred toward psychiatry all because a certain science fiction writer’s ideas about treating the mentally ill were rejected by the American Psychiatric Society because he didn’t have ANY evidence to back up his claims), did not just file a report on me and Susan. They also filed a report against UCLA, alleging that UCLA was breaching the “standard of care” and was apparently concealing child abuse."

So Scientologists were trying to get Jani taken away?
posted by stinkycheese at 12:57 PM on August 26 [1 favorite has favorites]

I was going to suggest LSD. I would search out a therapist who would try it, and if not, do it myself.

Probably not a feasible solution for this family, but very interesting link nonetheless.

This article destroyed my heart.
posted by futureisunwritten at 1:06 PM on August 26 [1 favorite has favorites]

So Scientologists were trying to get Jani taken away?

There were some pretty nasty posts on his blog (they might have been taken down since I saw them) accusing the Schofields of child abuse and pretty much telling them that they're monsters for putting their daughter on psychiatric medication, and a lot of their talking points were pretty similar to the language used by Scientologist anti-psychiatry front groups. Apparently this culminated in one of the anonymous commenters reporting the family to the Department of Children and Family Services using cherry-picked quotes from the blog itself.
posted by infinitywaltz at 1:11 PM on August 26 [1 favorite has favorites]

Oh man, that's just horrible.
posted by stinkycheese at 1:16 PM on August 26 [1 favorite has favorites]

But-- and I say this merely as commentary, not with the expectation that anyone hear my wisdom and obey-- if you are that parent, let someone else be his parent.

I have an acquaintance who adopted a sibling group of three through foster care. As the years passed, the two younger kids adapted well and were recovering from their early abuse and neglect. The oldest child had severe Reactive Attachment Disorder, and was unable to bond appropriately with his new family, was violent, and engaged in criminal behavior. They also found him re-creating sexual abuse scenarios with one of his sisters. After years of doing their best, trying the "best practice" in therapy for these kinds of kids, the parents eventually decided to let him go to a residential facility to live; they felt that living with him put their daughters at risk--well, they knew it did--and could very well undo all the healing and progress they'd made. The mother said explicitly that she felt like they had made the decision to sacrifice one of their children for the sake of the others.

These people are in an untenable position, and I would not suggest that they lose their younger child. But I also was struck by the tension here, and thought a lot as I was reading about what life was like for Bodhi, what his childhood will be like, the chances that he'll be undamaged by all this, and my heart goes out to him.
posted by not that girl at 1:27 PM on August 26

Can you imagine growing up with an older sibling that demands literally all of your parents attention, every second of the day, and whose occasional abuse of you is treated as an unfortunate inevitability?


Reminds me of that article written by the brother of a violent autistic man. Growing up in the shadow of that kind of emotional relationship is something I wouldn't wish on any child.
posted by hermitosis at 1:34 PM on August 26 [2 favorites has favorites]

My heart goes out to these people. I can't imagine how living like that must be.

I have to wonder though, why they seem to have unilaterally ruled out residential schooling programs. I haven't read the whole blog, but it seems like their school system is willing to pay for a residential school somewhere in Texas. I understand their desire to keep their child at home, but it seems like that decision is ruining their lives and their son's life. Residential schools aren't perfect, but it seems like they could spend some time advocating for the very best of those school with some success.
posted by fermezporte at 2:04 PM on August 26

fermezporte, if I recall correctly they have a trusted friend whose child went to the facility in Texas, where the child was abused and neglected (according to the friend). The Schofields are just unwilling to let their daughter go to a facility so far away, with a sketchy reputation, where they would not be able to immediately discover and intervene in the event of any mistreatment.

I know, it seems like there should be some option somewhere for this family, but there just isn't. Under our current system we have absolutely nowhere for this child to go, except back home to her heartbroken, fatigued, despairing, increasingly unstable parents.

It's not right. We, as a society, have failed this child.

Thank you for this post, infinitywaltz. I have been guilty of turning a blind eye because Jani's pain is more than I wanted to think about. I wanted to eat organic food and buy IKEA furniture and rail about employment personality tests and not remember that someone's baby girl is suffering, and there's a debate raging in Congress that, if it goes the right way, could result in help for her. Tonight I will be writing to my Senators and January Schofield will be my muse.
posted by philotes at 2:29 PM on August 26 [3 favorites has favorites]

I don't know about Sylvia Browne, but that entry you cited...

"Money, success, reputation, none of these things matter now. There is nothing we are trying to achieve. We live only for the hope that we can provide a better life for our children, which has nothing to do with money. Susan and I are both waiting to die. The only thing that stops us from speeding up the process is that our children need us. We have no hopes and dreams for ourselves anymore. I do want to die, but not today. The only reason I don't want to die today is that no one will love our children like we do."

Horrible. It's horrible that the only release, the only hope these people have, is to die. Good god.
posted by jenfullmoon at 2:42 PM on August 26 [2 favorites has favorites]

I can't find the words...
posted by sunshinesky at 2:45 PM on August 26 [1 favorite has favorites]

Note: This blog should be taken as representations of my emotional state at the time of writing, not fact.

Huh? I'm not sure what this means.
posted by Neofelis at 2:45 PM on August 26

My love suffers from mental illness. Reading Michael's journal entries has given me more understanding than I thought possible.

A couple of nights ago I stayed up with her through a suicidal spell. I woke up to her marching into the bathroom and upon returning, showing me a handful of pills (around 20-25 or so). She did some research and found out 10 would be an overdose.

Knowing that she has to balance these urges against maintaining a semblance of normal life is heartbreaking, but there is little we can do. Her health insurance through her parents expires next month, so I will be finding another job to pay out of pocket for her mental health care.

I can pretend to know this man's frustration, but the truth is we all have our own custom version of hell.
posted by tmt at 2:45 PM on August 26

Huh? I'm not sure what this means.

He means that he sometimes exaggerates when he's writing in the midst of an emotional crisis; he put that disclaimer up after the incident in this entry, because he'd said something in the "About Me" section about smacking his kid when she was psychotic and violent, and the online commenter that reported him to the authorities used that as evidence that he was beating his children. He'd also said something about "starving" Jani, which was also taken out of context and used against him in the same situation. What he had meant was that he'd followed her pediatrician's suggestion and taken a stance along the lines of "You can eat your dinner or not, but you're not getting anything else," but he ended up being accused of deliberately starving his child.
posted by infinitywaltz at 3:01 PM on August 26

metafilter: we all have our own custom version of hell.

.
posted by localroger at 3:08 PM on August 26 [1 favorite has favorites]

This guy has a good job, and what appears to be a first-class healthcare benefit package through the University.

His blog is required reading for anyone who would discuss healthcare in any way, shape or form.
posted by mikelieman at 3:42 PM on August 26

Ah ha, okay.
posted by Neofelis at 3:59 PM on August 26

I was curious as to what university he taught at and stumbled upon his RateMyProfessor page. A lot of students complain about how he complains about his personal life in class.

IF THEY ONLY HAD ANY IDEA. This makes me hate those students a little bit.
posted by k8t at 4:39 PM on August 26 [5 favorites has favorites]

Well, if they don't do a lot of work and he spends a lot of class complaining about his personal life (if the man has any energy at all to deal with the class work, I'm flabbergasted), those are reasonable complaints.

But yeah, if they only knew.
posted by jenfullmoon at 4:44 PM on August 26

Some years ago, in about 2002, I heard a This American Life episode in which a writer and single mom discussed her son's bipolar disorder. The kid had been diagnosed when he was only three or so, after he began talking obsessively of death and drawing black whirlpools. That was the last time I'd seen any substantive exploration of what happens when tiny kids suffer the kind of mental illnesses associated with adulthood. I'd love to listen to it again after reading this post, and link it here and if anyone is able to find it I'd be grateful.
posted by foxy_hedgehog at 4:46 PM on August 26

wow, absolutely heartwrenching. I was in tears reading about this family's desperation and sufferering. All most parents want is for their children is for them to be happy, healthy and safe, and these poor people are battling uphill all the way, to the point that their own mental, physical and emotional well-being is severely compromised. I cannot imagine living like that every day.
I will never complain about my kids again.
posted by phogirl at 8:02 PM on August 26

I was curious as to what university he taught at and stumbled upon his RateMyProfessor page.

I'm kind of glad I graduated before that website debuted. The overall tone seems very HOMEWORK IS GAY AMIRITE LOL, or is that just because Schofield teaches an intro class?
posted by infinitywaltz at 8:54 PM on August 26

I was curious as to what university he taught at and stumbled upon his RateMyProfessor page. A lot of students complain about how he complains about his personal life in class.

I'm cherry picking but, "Good teahcer. He somtimes rambels on random tangents, but he is still cool. He also supports writting about anything that interests you. And he looks good in blue*" is an absolute gem.
posted by peeedro at 11:31 PM on August 26 [1 favorite has favorites]

Good teahcer

Not good enough, apparently.
posted by infinitywaltz at 11:36 PM on August 26

Schizophrenia generally does kick the ass of not just the person who has it, but their entire family, and that is true, not just in America, but in almost any society. Many families do eventually break on the difficulties of trying to help the family members who have the disease, because the sheer effort of trying to keep the affected member(s) medication compliant, and reasonably housed and fed, sometimes against their immediate will, can be overwhelming, physically and financially, for a disorder that nearly always has periods of variable intensity.

One big problem is that the drugs we have to treat the disease simply aren't all that effective in managing it. Sometimes they stop working altogether, for no apparent reason. Some, like clozaril, have severe side effects, and require a regimen of medical supervision including regular blood tests that are keyed to prescription dispensing, that make such drugs nearly impossible to stay on, for outpatient schizophrenics who don't have superb family support.

And for kids like Jani, who will likely have a severe level of psychosis all her life, and who may never be in a position to be educated normally, to work, or to simply socialize with others, the disease's negative symptoms (alogia, affective flattening, avolition, low energy, social isolation, and depression) combine with its cognitive symptoms (disorganized thinking, slow thinking, difficulty understanding spoken communication, poor concentration, memory impairment, difficulty in integrating thought, feelings and behavior) to make a worse overall prognosis for independent living than its active symptoms (delusion, hallucinations, disorganized speech, disorganized or catatonic behavior) actually do. People often see the positive symptoms, and feel that the sufferer is much "better" when those symptoms are "controlled" by anti-psychotic medication; but the truth is, that the anti-psychotic meds we have do almost nothing for the negative and cognitive symptoms, and that these are the ones that ultimately demand the most from caregivers, and are most resistant to treatment of any kind. Most schizophrenics eventually wind up on a number of medications, including anti-depressives and related psych meds, as well as various other physical meds, to treat ancillary problems and side effects of the anti-psychotic meds. The meds are definitely helpful in reducing psychosis, but over a lifetime, many are slow poison to the liver, the kidneys, and other organs, and may, it seems, actually reduce the brain's abilities, over a lifetime.

But as someone who cares for an adult schizophrenic, I think Jani's parents are fundamentally right - no matter how much money you might have, you can't really hire help, or arrange residential treatment, that does what the family can, through the full spectrum of the disease. What mental hospitals can do is to be facilities for treatment and stabilization of the most acute phases of the disease, when a schizophrenic is actively psychotic, and in danger of harming himself or others. But presuming a medical team can find a balance of medications that does mitigate the worst of the active symptoms of the disease, someone is going to have to "be there" for the patient, to provide daily support and management of the negative and cognitive symptoms, that are the long term debilitating factors. Within our legal system, only a family bond is likely to survive over the patient's lifetime, and even those frequently break, when the schizophrenic refuses to remain medication compliant, or enters a psychotic state for which drugs are ineffective.

It's true that the lifetime costs of a single severe case of the disease can easily run to 7 or 8 figures in USD, if you count hospitalizations for psychotic behavior episodes, suicide attempts, ancillary hospitalizations resulting from direct side effects of medications, and long term drug costs and psychiatric services support. Over his 30+ years of being diagnosed with the disease, my brother's case has probably, all told, cost him and private insurers (when he was working), the Medicaid system, Social Security, and our family members more than $2 million. He has an expected lifetime of another 15 to 20 years, and barring some medical breakthrough, if I live to care for him until his death, it will probably cost me, Medicaid, Medicare and Social Security another $1 to 1.5 million, as he will never work again.

And that kind of cost is only as low as it is, because my brother has lived with first, my parents, until they died, and, now, myself, for more than 25 years, and we are unpaid primary care givers. As his primary caregiver, now, I provide his shelter, and see that he keeps himself and his clothing clean. Daily, I cook or see that he is fed a balanced diet, and one that manages his Type II diabetes (a secondary condition probably caused by his anti-psychotic meds), and that he remains medication compliant (I maintain his medication inventory, put out his dosages, and verify that he's taking them). I take him to medical appointments, and provide his clothing, and his vision and dental care, at my own expense. I speak with him every day, and assess his mental condition by observing speech patterns, and his response to my questions and conversation. I see that he gets regular exercise, and interacts with others and our pet dog appropriately. And I don't charge anyone a dime for doing these things, because he's my brother. The only "days off" I've gotten in the last 4 years have been when he's been hospitalized for psychotic breaks, or severe sepsis infections (another side effect of his anti-psychotic medication). But I don't mind - he's alive, and after a particularly rough winter, spring and summer, seems to be doing a little bit better in recent weeks. That's a kind of personal victory for us, like we've managed to come through a dark time, again, and again, kick back at this disease a bit, ourselves. In my talks through our local NAMI chapter, with other families supporting schizophrenics, our situation is not unusual, and better than most. So is Jani's family, as tough as their situation is.

People that think Jani's parent's biggest problems would be fixed by a national health insurance program simply don't understand this disease, or its long term nature. The real key isn't to assume that the country can afford to care for 1% of its population on case costs that would easily be 8 figures per case, lifetime, if done professionally. The real key would be to put a lot more money, now, into basic research, to finally figure out just what the heck is gone wrong in the schizophrenic brain, and to, finally, develop not treatments, but a cure.

Because one aspect of this issue that Jani's case does touch on, more than most accounts, is that unless we come to be able to cure this disease, proceeding to make our goal a lifetime of semi-effective treatment as we have now, is to consign its sufferers to a lifetime of at least eposidically intense, fearfully imagined horrors, and the kind of constant self-doubt that only those who struggle hourly for sanity now know. To anyone who has repeatedly visited the locked wards of our mental hospitals, as I have, and found a relative amongst the mumbling, shuffling sufferers of this disease, and other severe mental illnesses, hospitalization is not the answer. Community care is not the goal. Health insurance isn't the need.

A cure. That's the dream. And it should be our fast track goal.
posted by paulsc at 4:00 AM on August 27 [89 favorites has favorites]

How does Jani's case compare with, say, John Nash?
posted by kldickson at 7:20 AM on August 27

hey foxy_hedgehog, is this the episode you were talking about?
posted by capnsue at 8:35 AM on August 27

How does Jani's case compare with, say, John Nash?

The most obvious, I would think, would be age of onset. While Nash was described as "different" even in childhood, his schizophrenia didn't emerge until he was an adult. As far as Jani's parents and doctors can tell, she was schizophrenic from birth or shortly after. Nash was able to attend school, get advanced degrees and become renown in his field, all before his illness became debilitating. Jani will likely never have those opportunities; those are opportunities borne of functionality, which Jani's never been. Her one attempt at school was disastrous, as mentioned in the linked articles.

re: synesthesia and Jani -- It seems reasonable to think that, if it is the case that everyone is somewhat synesthetic in childhood, that Jani's association of people and things with numbers probably does have its roots in personality/number (grapheme personification) type synesthesia. Even if it's not as common as all that, it's not too far a leap to think that a brain that inherently processes things in a non-standard way might evidence that through a known but previously unrelated cognitive phenomenon.
posted by elfgirl at 8:49 AM on August 27

hug paulsc
posted by k8t at 8:51 AM on August 27

...hospitalization is not the answer. Community care is not the goal. Health insurance isn't the need.

A cure. That's the dream. And it should be our fast track goal.

Certainly, yes, a cure is far far better than hospitalization or trained respite caregivers or anything else a well-reformed healthcare system might be able to provide. In fact, that's true for all diseases, mental or otherwise. Clearly the best solution for people with health problems is to eliminate sickness. And if that was a real possibility, if there were evidence that by devoting $X,000,000,000,000 to medical research alone in 2 years we'd have a magic pill for every cancer, heart disease, immune deficiency syndrome, and mental disorder known to man, then that is the funding I would be rallying my representative to support.

But that's not possible. It's not on the table in Washington, and, as far as I know, there are no medical doctors or researchers claiming that it would work.

What is on the table right now are ways to ease the suffering, though not eliminate it. If you’ve read a sampling of Michael Schofield’s blog you’ve encountered by now a number of rants against Blue Shield. He spends hours upon hours arguing with “customer service representatives”, jumping through countless hoops, filling out paperwork, persuading, pushing, pleading with his health insurance company to pay for his daughter’s care. When he and his wife observed that a medication the doctor had prescribed was taking a terrible toll on their daughter’s body and wanted to take her off it, they had to weigh their decision in light of what the insurance company would say. When they pulled authorization for the drug, sure enough, Blue Shield refused to pay for January’s continued hospitalization on the grounds that the Schofields were not adhering to the treatment the profit-seeking bureaucrats thought was best for their daughter.

Eliminating Michael’s need to do daily battle with his health insurance company does not cure his daughter. But it does leave him with just a little bit more energy and patience and time that he can devote to taking care of his family. Why should we not fight to give him that?

Furthermore, if we can effect radical change in the way our country views healthcare, if we can convince the majority of citizens that no one should be looking at Jani as a potential X million dollar expense, that we should view her as a human being in need of medical care, if we can change the healthcare industry from a profit oriented enterprise to a cooperative system whose only goal is to treat the sick and help healthy people stay that way, then maybe there will be more impetus to find a cure for the most devastating illnesses. If there were no longer millions to be made by the development of a drug for Restless Leg Syndrome, then I posit that researchers would be thrilled to be allowed to devote their efforts to finding treatments for far more serious afflictions. Like schizophrenia.

My heart goes out to you as you care for your brother. No one who does not have a loved one afflicted with this disease knows the pain of the day to day survival that you describe. You must yearn for a cure every waking moment. I don’t fault you for throwing your hands up at the whole healthcare issue and stating that nothing but a cure could possibly help. After so many years of having your life co-opted by your brother’s illness, any slight reduction in insurance paperwork or lower healthcare payments or additional support services must seem like too little, too late.

And though it may end up being too little for the Schofields, I at least believe it is not too late. And I cannot let the perfect be the enemy of the good. I hope for a cure for your brother. In the meantime I will work to get him better care.
posted by philotes at 9:15 AM on August 27 [5 favorites has favorites]

from his blog:
For those of you who do not have mentally ill children, I am counting on you to teach your children to show kindness to the homeless and the crazy lady on the street, because that crazy lady might just be my daughter.

Schizophrenia especially, and mental illness generally, are incredibly expensive to treat, and vastly more expensive if not treated. Treatments now are better than they used to be, but far from the sort of effective, affordable treatment needed. It's a heart-breaking story.
posted by theora55 at 10:08 AM on August 27

capnsue, that's it. Starts about 25 minutes in. Thanks.
posted by foxy_hedgehog at 11:21 AM on August 27

"... Eliminating Michael’s need to do daily battle with his health insurance company does not cure his daughter. But it does leave him with just a little bit more energy and patience and time that he can devote to taking care of his family. Why should we not fight to give him that? ..."

Because it's a another numbers game, and one that simple math says we always lose. Even other countries with national health insurance schemes don't treat many of their schizophrenics, because the difficulty of doing so, on current treatment protocols, is just not economic. Once schizophrenics fall out of care schemes, they often don't return voluntarily.

In the U.S., about 1% of the population suffers from schizophrenia, depending on whose numbers you believe. But that's the generally bandied about incidence. So, you start with 3,400,000 current sufferers. My brother's current psych meds (Abilify, celexa, seroquel) cost Medicaid about $900 a month, and his outpatient psychiatric followup is probably worth another $3000 annually. So that's a maintenance cost of about $14,000 annually, before any costs for psychotic episodes, or other medical issues. My brother's med cost and outpatient follow up are within the normal cost range for outpatient treatment nationally. So, if all U.S. schizophrenics could be managed as outpatients, and needed no other episodic support, the base costs of treating this one disease, nationwide, if you could, would be about $47,000,000,000 per year, based on my brother's case costs.

But that's pie-in-the-sky optimistic. As Jani's case illustrates, severely disturbed schizophrenics do need more than simple outpatient meds and maintenance supervision. In the last year, for my brother, that has amounted to 1 hospitalization following a suicide attempt, and another for a psychotic episode. About 6 weeks of hospitalization, total, for problems that may have ultimately stemmed from low level infections that may have been driven by side effects of his anti-psychotic meds at the time (clozapine, a generic form of clozaril). Altogether, another $150,000+ of state funded medical care, some of it in hospitals that understandably no longer accept Medicaid levels of reimbursement. I'll wager that Jani's care costs for the last year dwarf my brother's, but this has been a bad year for my brother. Not his worst, but a bad one, nevertheless.

Let's say, optimistically, that the annual average costs for episodic psychotic hospitalization, and medical hospitalization for anti-psychotic drug side effects like infections and diabetes complications have a 5 year rolling average cost of about $20,000 a year, per treated patient. This is pretty close to what my brother's actual experience has been over the last 5 years. So, if you tack that cost on, for all 3,400,000 current U.S. schizophrenics, you get another $68,000,000,000 a year in direct treatment costs, for this disease. Put together with the outpatient care bill, and you'd be spending north of $100,000,000,000 a year for the direct care costs of the disease. That's a bit north of the 2002 national cost estimates by McEvoy for the disease ($62 billion), but it's in line with inflation, if not a little low.

Of course I'm not trying to take into consideration some of the factors that McEvoy cited, like lost productivity of families, criminal justice costs, and capital costs for state mental health facilities. If I did, I could pretty easily get my current cost estimates for universal treatment up to $150 billion+, annually.

This is just an unsustainable bill, for one mental disease, in any accounting scheme. Frankly, the only reason some people are now getting treatment, is that many don't. If you expect that by also treating those that don't now get treatment, you'll ultimately save money in a national insurance system, you haven't spent any time with those that don't get treatment now.

They lead marginal lives, on the very edge of society, and many of them don't live long, or at least, not as long as if they did get treatment. They often don't regularly get Social Security benefits, because they can't keep a permanent address. They don't incur costs to the health care system, because they don't trust doctors, and self-medicate, at their own expense, with Mad Dog 20/20, Colt malt liquor, and illegal street drugs. They don't generate long term social costs, like group home living costs, or in home supervision by visiting mental health nurses, that would be required, if you tried to materially treat all 3,400,000 schizophrenics in the U.S. immediately, under a national health insurance scheme.

"Street schizophrenics" do generate criminal justice system costs, but at a much lower rate and net lower cost to society, than if they were being successfully treated, for longer life terms, in outpatient therapy. I don't have any reliable figures to project how reductions in the minor criminal justice costs that treatment might create would offset increased treatment costs, but my anecdotal observations are summarized as "not much." Cops now only roust people in an active psychotic state, that are threatening others, or in situations that demonstrate they are an obvious, immediate danger to themselves. 95% of street schizophrenics stay on the street, until they die. You've got to be way beyond bizarre acting, to get arrested as mentally ill in America these days.

You have to recognize that, due to the nature of this disease, that extending health insurance benefits and medical treatment to the untreated, sets off additional social cost multipliers for services, that are not now incurred, and wouldn't probably be covered in any national health insurance scheme under discussion. So you think about that, about $100,000,000,000+ in direct costs, for one disease, in a new universal national health insurance plan, if you want. And then, try to figure out how you'd be able to cover all the other myriad expensive diseases in that same system, without breaking the bank.

The simple answer, and the experience of other countries, is that you won't. In Canada, in England, in France, in Germany, and in Japan, because of the difficulty in keeping schizophrenics on current drugs and treatment protocols for long periods of time, many go untreated. They live on the streets of Vancouver, London, Paris, Berlin and Tokyo, like they do New York, and L.A. In every system, the ineffective treatments for schizophrenia mean that those without effective long term family connections, eventually fall out of treatment.

Those that get treatment, do so, everywhere, because many don't.

The answer, economically, as well as humanely, is not to treat this disease, but to cure it. And you don't do that with insurance, in any form.

You do it with basic research.
posted by paulsc at 12:02 PM on August 27 [8 favorites has favorites]

paulsc, your post is extremely informative, and the numbers you cite are staggering.

But, correct me if I'm wrong, your main point is that we should not be spending money treating diseases (at least not chronic diseases with no truly effective treatments), we should be spending that money finding a cure. And that this is the most humane and compassionate course of action.

Please forgive me if this comes across accusatory or callous, I do not mean it that way and am asking with a genuine desire to know, why then do you get treatment for your brother? You mentioned that he is on anti-psychotic medication, receives outpatient follow up care, and is frequently hospitalized. Did he, in a lucid moment, ask you to seek this treatment for him despite your philosophical stance?
posted by philotes at 2:17 PM on August 27

Philotes: I don't think your comment is accusatory or callous. You do, however, seem very (maybe excessively) focused on making sure the issue of schizophrenia is framed in a way that supports your vision of health care in the United States.

What I am reading from Paulsc's experience as well as Jani's is that schizophrenia is an exceptional case in terms of afflictions. And it can't easily be seen as another convenient bullet point in terms of the current discussion on health care.
posted by thisperon at 3:42 PM on August 27

Please forgive me if this comes across accusatory or callous, I do not mean it that way and am asking with a genuine desire to know, why then do you get treatment for your brother?

And this? Are you REALLY asking this?
posted by thisperon at 3:44 PM on August 27

"... Did he, in a lucid moment, ask you to seek this treatment for him despite your philosophical stance?"
posted by philotes at 5:17 PM on August 27

Actually, our parents did. The promise of a sibling to dying parents, to care for a chronically ill sibling, is still motivational, and binding, even in this dissolute 21st century.

There have been times, like this past December, when my brother is on his meds, giving no sign of instability, and yet is episodically suicidal. I went shopping for 3 hours, leaving him home napping on a winter afternoon, and when I returned, he was semi-comatose and unresponsive, due to having ingested nearly a month's worth of one of his anti-psychotic meds. He'd written a note, which simply said "Paul, You wouldn't understand."

He's right. I didn't. I don't. But I couldn't leave him to die, choking on his own medication. So I called 911, and he spent 9 days in a coma, in ICU, and then 3 weeks, including Christmas, in a locked psychiatric ward. On Christmas, I took him new velcro closure shoes, because, on the locked ward, they won't let patients have shoelaces, or belts. He liked them, and they fit fine, and we watched some TV in the day room, with 32 other people whose names don't matter to us.

It wasn't his first attempt. It may not be his last. That's part of his disease, I'm told.

I can't be guided by his wishes, positive or negative, most days. He has to be guided by mine.

And I am guided by my promise.
posted by paulsc at 3:59 PM on August 27 [13 favorites has favorites]

MeTa
posted by foxy_hedgehog at 4:28 PM on August 27

After reading the first of the LA Times features, I found my way to the blogs that were discussing what many believed was the family's excessive drugging of their child. At that time, Michael Schofield had only just edited his About Me page to remove the references to starving and beating Jani, and had started deleting critical comments from readers.

I am not surprised to learn that someone reported the family to child protective services. I myself sent an email to the LA Times questioning how their reporter Shari Roan could spend months with this family and admit in an email to a blogger that she had been aware of the self-reported beating and starving, but neither include mention in her article nor make an abuse report herself.

Starving and beating "in an impotent rage" are now being spun as figures of speech? Sorry, but that's simply not a believable explanation. The way the About Me was written made it clear that these were horrible, upsetting things that were done when the parents felt they had reached their limits. Shari Roan corroborated and defended the physical abuse.

I don't know the family. It's obvious they are all suffering enormously. But I'm skeptical of this story as it is being told, and by the fact that both parents have a hobbyist's interest in spinning compelling narratives of mental illness, the father with his blog, the mother with a podcast about her bipolar disease. Bringing another child into this mess seems terribly unfair/ill-considered/borderline abusive. Those edits to the About Me seemed self-serving and the explanation unconvincing. And for someone who says his entire life is taken up in caring for an out of control child, and who admits his healthy child is neglected, how come the blog rambles on and on and on like the writer has hours a day for introspection/editing?
posted by Scram at 6:08 PM on August 27 [2 favorites has favorites]

Scram, you'll notice that the blog rambles on and on and on just every few weeks? Mostly when Jani is in the hospital? And you'll notice that what tipped the whole situation was the birth of the second child - that Jani only really started exhibiting psychotic symptoms after Bodhi's birth? I'm compelled to ask whether you have kids. As a parent, let me tell you, even the normal ones drive you to the edge; a psychotic break in the older sibling would definitely drive anybody over.

Even if this situation had become abusive - which I'm not stipulating - then clearly, now that they've at least identified the actual illness, they're on the right path. Calling in child services based on Internet postings and years after the fact is boneheaded and malicious. Common enough traits on the Internet, I suppose, but still wrong. And at any rate, child services is satisfied that the situation is not abusive, and child services is there, whereas you are not. So sniping? Not so cool.

paulsc, clearly you're right; we need to do more research in everything, and we don't, because it would be "too expensive". To take an analogy, let's take my son, who has kidney disease and is uninsured because we've moved from one state to another and I have the poor taste to be self-employed. A classic case of why the American system doesn't work. You essentially are saying that fixing the system to make sure that he would receive treatment for kidney disease would be futile, that instead we should be curing kidney disease.

I agree wholeheartedly with America plowing money into kidney disease research. I would love to have a healthy son. But as things stand right now, if America doesn't get its act together, I'll have to leave the country if his current stable condition gets worse, and avail myself of the European system (he happens also to be a Hungarian citizen, and so there, he is covered). And he has that option, but lots of kids don't, and will die instead. Of course, they'll die anyway, it's true, even if we pay a bunch of money to make it happen later. So perhaps we should just ... what? Not reform a system that's clearly broken in many ways? I'm not following you on that.

Even if your numbers are correct - and I have to admit in support, of my graduating class of 100 people, 1 was in fact schizophrenic and died recently - then reform of the health care system does not mean we're going to round up all the street homeless and give them all the health care they need. As you say, nobody else does. The schizophrenic is invisible to society, and so they won't cost much. This is to our moral detriment, but still -- nobody's proposing that we're going to spend $150 billion to have healthy street people.

But then again, we spend way more than that on having dead Iraqis, so maybe $150 billion to have healthy street people might be a good idea? After all, that's an awful lot of crime you wouldn't have. The intangible benefits would also be colossal - how about increasing property values in neighborhoods with a lot of no-longer-homeless? Take my own neighborhood, for example. I just bought a house for $8000 (blog) and the carriage house apartment I'm typing this post in right now was inhabited by a man whose brain was being eaten by Huntington's Disease. It had food caked on the ceiling and urine in the heating ducts, and only one of the six windows had not had furniture thrown through it. Proper care for him - by which I mean, not letting society deal with it haphazardly and incorrectly - would have saved this neighborhood one derelict house. Fortunately, I came along, and it's not derelict now, but the cost to society of letting this stuff go is way more than $150 billion dollars a year. It's like car maintenance. Sure, you can save money for a while by not doing it. But eventually you have no car and it's way more expensive to buy a new one, or just learn to do without, and lose your job and start buying your food at the convenience store within walking distance, which latter route is the one America seems to be trying out.

So I guess I'm really saying, in a nutshell, (1) I don't think the need for research obviates the need for a better care system; (2) I don't think your numbers mean that the costs will actually be that high; and (3) even those high costs are probably worth it, to be perfectly honest. Imho. You're still right on your call for investment in cures - that would fix the problem permanently. But then the costs of care would go down. The responsible thing would obviously be to do both. Choosing is a false dichotomy.
posted by Michael Roberts at 8:14 PM on August 27 [1 favorite has favorites]

But I'm skeptical of this story as it is being told, and by the fact that both parents have a hobbyist's interest in spinning compelling narratives of mental illness, the father with his blog, the mother with a podcast about her bipolar disease.

The mother's radio show isn't about her bipolar disease; she doesn't have a bipolar disease. It's a political podcast about the division between "left wing" and "right wing."
posted by infinitywaltz at 8:18 PM on August 27

What a great, thought provoking thread.

This discussion has made me wonder what would happen if we, as a society, spent even 1/10th of the money we spent on researching drugs that seem to barely control schizophrenia and instead poured that money into finding a cure. Would paulsc's prayers be answered?
posted by Effigy2000 at 8:35 PM on August 27

I can't be guided by his wishes, positive or negative, most days. He has to be guided by mine.

And I am guided by my promise.

Bless you, sir, for being a man of your word.
posted by Devils Rancher at 8:41 PM on August 27 [1 favorite has favorites]

I came here to point out that what should be added to this post is the number of blogs and websites just publicly crucifying this family. After first reading Jani's story a month or so ago, I started sending the family supportive comments from time to time. And I started to read constant, anonymous sniping on their own website and others. I thought I should point that out, and then I saw that one of our own - Scram - was a participant in that accusational nonsense and I was ashamed.

These deluded people repeatedly point back to a few words written from the depths of angst (and there is no feeling that produces self-blame and hysteria like a critically, uncurably or terminally ill child - I would know), and presume to conclude that child abuse caused Jani's disease or that the parents are over-medicating her for their own convenience. This, despite child protection repeatedly investigating these unfounded charges and the near-constant medical supervision of this child. She lives in a HOSPITAL for fucks sake!!! Her parents are not beating her. Get over it!

Walk a mile in their shoes, or, well, scram, Scram.
posted by bunnycup at 9:02 PM on August 27 [1 favorite has favorites]

bunnycup, I think you can be skeptical of the family's self-presentation without being a "participant in accusational nonsense" with whom others should be ashamed to be associated. I personally find something rather off about the father's persona -- particularly in the passage about his in-laws not showing proper attentions to his family -- and I have no investment in treatment for childhood mental disorders one way or the other. And I share others' concerns for the second child, who appears to have been conceived as Jani's therapy doll.
posted by palliser at 9:33 PM on August 27 [1 favorite has favorites]

I found something very "off" about the father's persona when I read about how his anger led to emotional and physical abuse of his wife, up to where he once tried to push her out of a moving car. That makes his claim about the beatings that supposedly didn't really happen seem less than believable.

I also found it very odd that they talk about having to scrounge for money to move into the two new apartments, but at the same time, giving "hundreds" of dollars to the homeless/mentally ill that they see on the street.

Also outing his brother-in-law on his blog, as Palliser mentioned - that was creepy.

However, if I was in that kind of situation, I probably wouldn't be holding it together even a tenth as good as they are. Requoting Drastic : "The entire story's a kind of godawful fractal heartbreak--no matter how you zoom into it, every piece contains just as much heartbreak as a wider view."
posted by HopperFan at 10:03 PM on August 27

infinitywaltz, I have not listened to the mother's podcast, just read something in one of those blog comments last month which stated that it was about her bipolar disorder. Thanks for clarifying the error, and I apologize for spreading misinformation.

bunnycup, sorry to offend you. I have no opinion about over-medicating, nor have I expressed any opinion on if Jani's condition is caused by abuse or organic illness. But I'm not sorry that I simply have zero tolerance for people hitting their kids... and then lying about it. Same for reporters deciding it's okay for their subjects to hit their kids and suppressing the information, especially when the offender is being presented by himself and the press as stringently honest. I find the lie as offensive as the fist.
posted by Scram at 10:42 PM on August 27

Scram, what I find offensive is the refusal of you and your like-minded haters (a pathetic word choice, but I've only been awake 5 minutes) to extend ANY sympathy to this family because of one event that the medical community and the Child Welfare folks - that is, people who have MET Jani, examined her, treated her and monitored her - have concluded did not happen. If your knowledge of Jani and her parents is somehow equivalent to these professionals, please let me know - otherwise you are another accusational critic with no grounds to make the judgments you have. I see that you have said "I simply have zero tolerance for people hitting their kids" but you should have said "I simply have zero tolerance for people who internet rumors say are hitting their kids, even when those accusations have not born out under careful state and medical investigation. If someone says he hit his kid, I hate him."

"Skeptical of the family's self-presentation" (what weasel words!) or not, this family is clearly going through a medical disaster and a trauma which (given its extreme statistical rarity) I am quite sure these insistent critics have not faced. Who are you to decide to withhold sympathy based on disproven accusations and dislike for the family's written expressional style? By no means are you obligated to extend sympathy, either, but to actively denigrate the family is disgusting.

And if you can't extend sympathy to a CHILD who is severely suffering, because you don't like their parents....yeah, ashamed is a good word. There are a lot more, but I'll stick with ashamed.
posted by bunnycup at 5:45 AM on August 28 [1 favorite has favorites]

I found something very "off" about the father's persona when I read about how his anger led to emotional and physical abuse of his wife, up to where he once tried to push her out of a moving car. That makes his claim about the beatings that supposedly didn't really happen seem less than believable.

Huh. What do you know? Mentally ill people, even when in treatment, don't make logical sense 100% of the time. Also, water is wet.

This man is clearly doing his best. He's expressing pages and pages of his feelings, as a form of therapy, of which there is never enough. Contradictory as some of these feelings may be to others, their schizophrenic clashes are the real picture; there is no simple soundbite or coherent gameplan or party line.
posted by Ambrosia Voyeur at 10:11 AM on August 28

And if you can't extend sympathy to a CHILD who is severely suffering, because you don't like their parents....yeah, ashamed is a good word. There are a lot more, but I'll stick with ashamed.

This is utterly unsupported by anything anyone has said in this thread.

I feel for Jani, who obviously has severe, endogenous mental illness that could not possibly have been "caused," in any sense, by her parents' hitting her, whether they did or not. Just not possible. If that's what you think I'm arguing with, you're wrong.

The father's later explanation for his description of hitting Jani makes no sense, though. He definitely said he hit her. It's perfectly fair to say it's a shame he did that, and that it makes me personally unable to see the parents as brave, noble warriors for their daughter's mental health. That doesn't mean I don't feel for them, though, because their situation is impossibly difficult.

Another concern is that their second child seems to have been crowded out by his sister's illness. Raising a child is a big job in itself, and it seems like the raising of Bodhi is being stuffed into the small breaks from handling his sister's mental illness.

Ambrosia Voyeur, I could be confused, but by "their schizophrenic clashes," do you mean the father is schizophrenic, too? I thought his mental illness was depression, which I don't think would inhibit a coherent, accurate retelling of past events.
posted by palliser at 12:15 PM on August 28 [1 favorite has favorites]

"Huh. What do you know? Mentally ill people, even when in treatment, don't make logical sense 100% of the time. Also, water is wet."

I don't disagree that he's doing his best. In fact, re-read my last paragraph,I said that his best was probably far better than what I'd be able to do in the same situation.

However, I was referring to his assertion that the beatings of Jani didn't actually happen, which was somewhat fishy to begin with - and even more so after he admitted to prior physical violence. I was not making any claims about whether a guy with anger problems and/or mental issues is "logical" 100% of the time.
posted by HopperFan at 12:33 PM on August 28

"And if you can't extend sympathy to a CHILD who is severely suffering..."

Was this sentiment posted somewhere else? I can't find where Scram said that here.
posted by HopperFan at 12:37 PM on August 28

palliser, I didn't mean to imply that the father is schizophrenic, and was just using the word in a literary sense, which obscured my meaning, apparently. I agree that his behavior in his blog, including weird revisionism, is suspect, offputting, and exposes contradictions in his worldview, which is a phenomenon I described as "schizophrenic," though not in a diagnostic sense. As a stroyteller, he is not that reliable.

Interestingly to me, you do have to wonder how much a person's sense of reality might be warped when they're the primary caregiver and empath for someone who suffers from psychosis and delusions.

In any case, his possibly poor choices, past and present, don't prompt me to judge him on ethical grounds, because I, like many others speaking here, am cognizant of the fact that he is under to such unimaginable duress that he earns my assumption of extenuation. That's what I mean when I say I assume, and trust, that he is doing his best.

Our judging him as a storyteller is fine but judging him as a parent isn't, to my way of thinking. Obviously, the distinction between the two is a bit of a fuzzy line here. But he acknowledges that when he disavows the objective truth of the blog, doesn't he? Nevertheless, we want to know the truth, because we also empathize with Jani, so we feel conflicted. I doubt anyone who is angry with the father is unempathetic, just identifying more with Jani than with him, which is something you can only credit to him, within the context of his writings, anyway.
posted by Ambrosia Voyeur at 1:37 PM on August 28

I tremendously respect him for putting this out there. If he feels he has to lie, now, to reduce his family's vulnerability to drive-by Internet snipers trying to push an agenda (this isn't leveled at anyone here) then ... in the same place, I'd lie. In a heartbeat.

My wife and I have had some serious fights over the twenty years we've been married. I never tried to push her out of a moving car, but let me tell you that when you're that emotionally vulnerable to someone, and they're desperate enough to push you beyond your limits because your shared life is falling apart and becoming hell around you, then you'll end up doing some pretty awful shit.

Now, in our specific case, it was my having lied about paying taxes for a couple of years. That's pretty minor in comparison to having a psychotic five-year-old and a new baby who she's literally trying to kill. And yet it was enough to push both my wife and me to do some pretty awful things.

The difference is that I didn't write about it in public. Michael Schofield does. And I honestly and truly don't want him to stop. If he went through a period of physical violence, well, people do that. If they grow beyond it, then trying to get child services involved later is just wrong. It's when they don't grow beyond it, when that goes on for entire childhoods or even spanning generations, that's when intervention is necessary.

But yeah, assholes on the Internet, well, we all know they have no limits. So they're trying to take the personal hell of the Schofields and make it worse. If Schofield has to lie to get that shit to stop, he'll lie. He'll do anything to survive. More power to him.

As to having a second child - people have second children for worse reasons than that they think it would be better to have a companion for their first child. We did that - our daughter actually asked for a sibling. She was pretty pretty disappointed to have gotten a brother instead of a sister. Were we wrong to do that? Would we have been retroactively wrong had we later discovered that our daughter was psychotic? Because that's what you're saying is wrong about what the Schofields did.

They've done nothing wrong, and the world is doing its damnedest to shit on them. I'm overjoyed that writing about it helps Michael Schofield personally not be any crazier than this situation demands, and I think it's fantastic that the Internet allows me to read it. It's less than fantastic that the Internet allows a bunch of people to second-guess him without understanding a hundredth of the shit that is his life, and even actively to attempt to make it all worse. I guess that's just the tradeoff we're stuck with.

(Metafilter: the tradeoff we're stuck with.)
posted by Michael Roberts at 8:31 PM on August 28 [2 favorites has favorites]

Would we have been retroactively wrong had we later discovered that our daughter was psychotic? Because that's what you're saying is wrong about what the Schofields did.

Again, the contradictions between his self-dramatization and his self-justification make it hard to know whether that's what I'm saying he did. In one place, he says they didn't know she was psychotic when they decided to have another child. In another place, he says they conceived Bodhi as a last-ditch attempt to end her delusional, hallucinatory isolation. So they not only knew what there was to know -- that she attacked people violently and was impervious to reason when in a delusional state -- but had the second child because of that.

It's when they don't grow beyond it, when that goes on for entire childhoods or even spanning generations, that's when intervention is necessary.

Sorry, what? Intervention is necessary only when abuse has spanned a whole childhood? That sounds, um, useless. "Sorry, kid, you're only 6. Come back when you're 18 and let us know if it went on the whole time."
posted by palliser at 9:12 PM on August 28

Intervention is necessary only when abuse has spanned a whole childhood?

Well, no, that was clumsy of me. But intervention in this case, when it looks as though it's well past, seems unhelpful. Not to mention redundant.
posted by Michael Roberts at 1:58 PM on August 29

I have deep sympathy for your situation, paulsc, and I agree that a cure for schizophrenia would be ideal. But as a scientist who does research into neurological diseases, I have to make it clear that this is simply not a realistic prospect. Offhand, I can't think of a single neurological or psychiatric disease for which a cure has been found. These are extremely complex diseases, of which we have very little understanding, despite billions of dollars of research annually.

If you poured 100 million dollars every year for 10 years into schizophrenia research, you might, at the end of it, get a handful of reliable leads, which would require many more millions and 5-10 years to develop a few novel drugs, most of which wouldn't make it through clinical trials. Any drugs that did would only represent another treatment; they would work for some but not others, would not alleviate all symptoms, and would have side effects which some patients would find unacceptable. This is the nature of the field, and it isn't likely to change anytime soon.

The brain is simply not designed in a way that makes targeted manipulation easy, and while a better understanding of the brain will ultimately lead to better treatments, biomed research is inherently slow and expensive. Even among neuropsychiatric disorders, schizophrenia is particularly resistant to study. It has no well-defined molecular pathology, no obvious genetic influences, and there is (to my knowledge) no animal model that can reproduce it. These are nontrivial problems, and they have little to do with a lack of funding.

That's not to say that research isn't important, or that a dedicated influx of money wouldn’t make a difference. But it would take something like a Manhattan Project-scale research effort to make much of a dent in the problem, and even then I wouldn’t hold out for a cure.
posted by dephlogisticated at 10:16 PM on August 29

The person who runs that "Is Something Not Quite Right With Stan - A Mental Health Blog" site is (judging by the articles related to Jani) a real sanctimonious fuck.
posted by m0nm0n at 8:30 AM on August 30

I don't want to get in the middle of a fight, and my words have already been taken the wrong way, but I can't not say this: having gone back and read the post from April about the brother-in-law after seeing it referenced here, I challenge anyone to click that link, search for the paragraph that begins "Bodhi took ten steps last night and when I arrived at UCLA today I told her this," and defend the parenting described. The child who is being harmed is not Jani, it's her baby brother.

The description of how his parents make him play with her again and again, and each time he spills something she assaults him, is simply terrifying. These attacks are interspersed with the parents making Jani tell Bodhi how much she loves him. This demand triggers the first attack ("Now you will love him, right?").

I'm not a parent, I'm not a shrink, but I am a true crime writer. I know a lot about the ways in which you can warp a young human soul. No little kid who is repeatedly exposed to unpredictable violence swaddled in love will emerge unscathed by the experience. A much more common family dynamic of this sort would involve a borderline parent who lacks healthy boundaries; I don't know of another case where a diagnosed psychotic child is placed into regular, semi-supervised contact with a healthy sibling.

In a few years, if Michael Schofield is complaining about how angry and out of control Bodhi is, it won't be a surprise, but it will be a damn shame. The parents and other adult family members can make a mature decision to face their daughter's rage, but the baby cannot. In the context of a blog post which seeks to name and shame an extended family member for not wanting to go into the hospital to face a raging child, this forced interaction seems more about proving something (love means taking your psychotic sister's abuse) than doing what is best for either child.

By blogging his family's problems and participating in news stories, Michael Schofield opens himself up to people criticizing his choices and looking critically at what he says, what he changes, and what seems inconsistent. I believe that the magnitude of Jani's problems, and the huge amount of painful verbiage in the blog, make it hard for anyone to get a sense of what is actually happening in macrocosm.

I believe a baby who is being attacked by a larger child should be protected. Anyone who believes differently is entitled to their opinion, but I'd appreciate if they didn't call me names if they disagree.
posted by Scram at 8:45 AM on August 30 [6 favorites has favorites]

"... Offhand, I can't think of a single neurological or psychiatric disease for which a cure has been found. ..."
posted by dephlogisticated at 1:16 AM on August 30

I take your point, dephlogisticated, but I offer a couple of thoughts, vis a vis the "impossibility" of a cure.

First, there are now very effective "cures" for neurological diseases that were once awful, and even universally fatal. But because we learned about the infectious agents that caused rabies, and polio, we were able to develop hygiene programs, vaccines, and epidemiological tracking models that have so effectively eradicated those two terrible neurological problems in the U.S., that young doctors may never see a human case of either, unless they leave the U.S. So, in the larger sense, a "cure" for schizophrenia might be an intervention that prevents the disease from developing in a person in the late teens or early 20s, as opposed to something that is given only after the disease is full blown in an individual. That kind of thing, I count as a "cure," as much I do the Sabin oral vaccine for polio. Not getting a disease, because of prophylaxis, is every bit as "curative" as fixing it after it is incurred, as far as I'm concerned.

Second, over in the Meta thread, work by Dr. Dan Javitt was mentioned, about the use of glycine derivatives to influence NMDA receptors in the brain, as a different possible treatment modality, entirely, than the current range of atypical anti-psychotic drugs offers. To the lay person, such work sounds promising, but we also know that it is not being actively pursued, due to research funding limitations, the interests of researchers in the field, and the lack of recognized animal models for the disease. Shoot, just expanding the base of animal modeling would be a valuable use of basic research dollars, but we don't even see much of that. So, if the national health insurance debate leads us toward still greater scarcity of Federal dollars, we may find that basic research, which for mental illness, is largely in the U.S. a Federal funding monopoly, is even more of a desert than it already is.

Third, I think that it is too easy to see a possible cure for schizophrenia or bipolar disorder or other long term debilitating mental illness, as essentially a pharmaceutical result. I, for one, am not convinced this is necessarily the only route, or even the most promising. I look at ongoing developments in biomedical electronics, nanotech, and the broader field of biology, and wonder if some synthesis of technology might provide such a superior method of monitoring the disease symptoms, and fine tuning the delivery of medications, that it seems to be an effective cure. After all, on his best days, when his meds are really working, my brother is still, at 54, somewhat the happy-go-lucky, bad joke loving guy that joined the Army at 19, and went off to Europe a couple years later, to train NATO troops on U.S. artillery munitions. It's just that his best days are variably interspersed with many not-as-good days. If we could better understand and monitor the low level effectiveness and uptake of his current meds, and micro-correct their delivery, perhaps we could see them have a better net effect, at lower dosages. If that were to happen, the improvement would be so transformational as to be counted by most family members as a "cure," I think. And such techiques don't seem that futuristic, to me.

And finally, I don't restrict my call for a cure to just schizophrenia, or to mental illness. I think it is possible to develop a national cost/benefit model, that would rate the overall cost to society of various diseases, against their costs of treatment, or lack thereof. For debilitating, relatively common, yet not life threatening conditions like mental illness, the overall costs of treatment are so great, that they demand better treatments, if not a cure. So for these, a heavy "Manhattan Project" approach may well be needed, and warranted. For $100 billion, the one year treatment cost of schizophrenia in the U.S., I bet we'd get viable animal models, exploration of alternative brain receptor treatment modalities, and possibly some real biomedical monitoring innovation, for sufferers of the disease. We might even find that the result of that investment was so great, that it paid back in a decade, in decreased treatment costs. That's powerful. Those kinds of treatment savings could then be poured into the next biggest chronic ailments on the list. And that is how, over time, we'd push the benefits of a cure for schizophrenia along to other conditions, like even kidney disease, as well.
posted by paulsc at 3:43 PM on September 2

Scram, I agree with your last post 1000 times over.
posted by I'm Brian and so's my wife! at 4:44 PM on September 2

paulsc I don't at all want to demean your desire to see cures for mental illnesses pushed as hard and as fast as they can, and I think I have to agree on the cost/benefit aspect. I have a family member who is walking the line between a range of diagnosable psychiatric disorders, and it's severely impacted our entire family, both emotionally and financially. If someone developed a pill or a procedure that would actually cure the mis-firing synapses, I'd be eternally grateful, as right now, this person is not functional in society at all. Our insurance is done with the brain -- all spent out. From here on, it's only good for the part of the body between the feet and the eyeballs. Very frustrating, as we're now relying on county social services, which basically means FOAD. There are days when we actually hope for an arrest so that maybe the courts can remand them to some sort of in-patient facility. So, to a degree, I can empathize with your situation, and your point of view on research and treatment -- more needs to be done -- a LOT more.

However, I think it's probably counter-productive to conflate pathogens with neurological disorders that are either hormonal, chemical or structural problems with a person's natural makeup. They seem to be infinitely harder to develop treatments for than targeting and killing a virus, or preventing infection from same. Changing how a brain works is not the same thing as killing some microbes at all.
posted by Devils Rancher at 7:03 PM on September 2

Scram, you are acting sort of fucked up. You made me sad I came back to this thread.

I'm not a parent, I'm not a shrink, but I am a true crime writer.

Thanks for the chuckle. I guess.

None of us know what's completely going on with this child, but leave the poor guy alone.

No little kid who is repeatedly exposed to unpredictable violence swaddled in love will emerge unscathed by the experience.

You realize you're describing 95% of the "normal" sibling relationships out there.

(dephlogisticated, I'm curious to know what you think of the Bender experiment.)
posted by mrgrimm at 9:41 PM on September 2 [1 favorite has favorites]

You realize you're describing 95% of the "normal" sibling relationships out there.

Absurd. There's nothing normal about the way Jani treats her brother, as the parents themselves readily recognize. The frequency and severity of the attacks make all the difference in terms of what's deeply traumatic and what's just a normal annoyance of childhood. In this story you can see researchers and clinicians making the distinction clear -- "a pattern of repeated violence and intimidation" defines abuse, rather than normal sibling rivalry.

There's also the age of the victim -- 18 months old. That is a baby. She is comparatively very strong and capable of severely injuring him. Babies don't actually get hit and kicked repeatedly, as hard as a 7-year-old can do it, in "normal" families.

I can't believe anyone could read that description of Bodhi's treatment by Jani and come away saying, meh, I remember my sister and I used to fight sometimes.
posted by palliser at 5:51 AM on September 3 [2 favorites has favorites]

From the L.A. Times, an update: "The major setback for Michael and Susan Schofield, Jani's parents, was learning that she was not accepted into a top-flight study on child schizophrenia at the National Institute of Mental Health."
posted by tyrantkitty at 12:18 PM on September 18

mrgrimm,

I'm not an authority on schizophrenia, but I think this study is nuts. I doubt it would have any chance of getting IRB approval today.

From what I can tell, they were treating schizophrenic children who showed primarily negative symtoms. They used the term "autistic" to describe these symptoms, but I believe this was before autism was widely recognized as a distinct disorder, so I assume they weren't talking about children diagnosed with both schizophrenia and autism proper.

So it seems that they were specifically trying to alleviate negative symptoms, which is good, because trying to treat positive symptoms with LSD would be like trying to put out fire with gasoline. The problem is that various combinations of positive and negative symptoms can occur in patients, and the idea of using a psychotomimetic drug to treat patients that could be prone to psychotic episodes seems questionable, to say the least.

Other things worth noting: the study size was small; they used no placebo group; neither drug administration nor behavioral testing was blinded; much of the reported behavioral changes were subjective and anecdotal; they provided no methods or statistical data for their biochemical tests.

I fully support the investigation of recreational drugs for therapeutic uses (MAPS has done a lot of good work in this area), but this particular study looks poorly designed and questionable in terms of rationale. If LSD can be used effectively for the treatment of schizophrenia, this paper doesn't convince me of it.
posted by dephlogisticated at 3:20 PM on September 20