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A Schizophrenic in Toronto (Subdivisions)

I am often asked what Jani “experiences.” In other words, what is going on inside her head. In fact, it was one of the things my book publisher wanted: to go inside the world of a child with schizophrenia.

 

If that is what my publisher wanted, I failed. In fact, I didn’t really even try.

 

Because I can only speculate, and I am sure my speculation comes nowhere close to the reality. How funny, using the term “reality” in this case. After all, that is the crux of the problem, isn’t it?

 

Reality itself, after all, is far from concrete. I define it two ways. First, reality is that we believe is real because our senses tell us so. For those of us who can see, vision is the dominant sense. The processing of visual images is so complex that it requires three different parts of the brain: occipital lobe (back of the brain), parietal lobe (sides of the brain), and the prefrontal cortex (the front of the brain). We know now that the visual cortex is located in the occipital lobe. The parietal lobe is responsible for spatial awareness, converting visual stimuli to three dimensional images, and “remapping” our visual field when we turn our head or eyes. It is also responsible to integrating visual information with that of other senses (which are primarily located in the parietal lobe). Then the prefrontal cortex must process the information received and make sense of it.

 

Vision alone takes up far more brain processing than the mythical “10%” of the human brain is actually being used (primarily refuted by the fact that if 90% of the brain was non-functional then significant damage could occur without loss of existing abilities. This is most definitely not true. Damage to any part of the brain results in some loss of functioning and ability). During periods of wakefulness, most of the brain is active in processing external stimuli.

 

“Don’t believe everything you see,” is the old saying, but it is hard not to. That’s what the brain is designed to do. The other four senses, touch, smell, hearing, and taste, fill in the gaps left by vision, thereby ensuring our survival.

 

Which, by the way, is the whole purpose of our senses: to ensure our survival.

 

A snakebite is painful.

 

We can smell food.

 

We can hear the sound of running water or the roar of a lion.

 

Millipedes taste bad so we don’t eat them (It turns out they contain small amounts of cyanide).

 

What is “real” is ultimately that which can threaten our survival. That is the most basic definition.

Then there is second reality: the “common reality,” or what we generally agree is real. This is a bit complicated, though. One person could see a tree and walk up and touch the tree, while another nine, for whatever reason, cannot. The nine who cannot see or touch the tree would conclude that the tree is not real, even though it fits the definition of reality for the one who can see it.

 

In the end, common reality allows for social functioning. In order to form civilization, we have to have common reference points for the world around us.

 

So social constructionists would then argue that “reality” is constructed. I doubt it. If a tree falls in the woods and no one is around to hear it, does it make a sound?

 

Of course it does. Objects move air, creating sound waves, and it doesn’t matter if there is a human ear there to detect it or not. This would argue that there is a third “reality” that exists entirely outside of us, which would lend credence to the idea that our reality is not socially constructed but in fact “real.”

 

If you are underneath that falling tree, it is going to kill you whether you believe in it or not.

 

So then, we can argue that hallucinations at least fit the criteria for the first version of “reality.” For those who have them, they can see them, touch them, hear them, smell them, and taste them. And if one can detect them through the senses, particularly when all senses are working together to contribute to the hallucination, they can very much kill.

 

What would you do if you saw a lion running at you? Probably the same thing that a girl might do if she saw a man with red glowing eyes.

 

It’s like when you were a little child. You hated it every time your parents turned off your bedroom light at night. Because you were sure there was something there, in your closet, under your bed. You would scream for your parents and they would tell you nothing is there and that it is just your imagination.

 

Eventually, we got over that fear of the dark because we never saw the monsters we were convinced were there.

 

Now, imagine you did see them. And nobody believes you, not least of all your parents. How long does it take before you stop telling them? It is the conservation of energy principal. You need that energy to fight off the demons. You can’t waste it arguing with people who you know can never see what you see.

 

And you grow up. And still they come for you. And there is no one to save you.

 

Unfortunately, we are talking about the brain. Every brain is different. Despite our “common reality” we also process the world in slightly different ways. Which is why your spouse seems pissed off at you and you have no idea what you did. No human disease will affect two people in precisely the same way. And neither does mental illness.

 

“You are psycho…”

 

What exactly does that mean?

 

Psychosis is a common trope of Hollywood horror films. After all, one of the most iconic films of all time is named Psycho.

 

Janet Leigh, on the run, checks into the Bates Motel to hide out. She strikes up a conversation with the proprietor of the hotel, Norman Bates. Smitten with her, he invites her to dinner. While taking a shower, a shadow of an old woman appears and beheads her (stabs in the original book by Robert Bloch, which he loosely based on the murders of Ed Gein-later to be the influence for “Leatherface” in The Texas Chainsaw Massacre and “Buffalo Bill” in Silence of the Lambs).

 

If you haven’t seen Hitchcock’s immortal film, I am going to ruin the ending for you.

 

The killer is “Mother.”

 

And “Mother” is Norman Bates. Norman has two distinct personalities, his and “Mother,” who he became after he found his mother in bed with a lover and killed her in a fit of jealousy. Horrified by what he had done and needing his mother, his psyche fractured into two personalities.

 

So the movie title is a bit of a misnomer.

 

Is the character of Norman Bates psychotic?

 

Yes, in the sense that he believes his mother to still be alive (thought disorder) and he “hears” her calling to him (auditory hallucination.” The distinct personality of “Mother,” however, is not a characteristic of psychosis. It is closer to “multiple personality disorder,” now called “Disassociative Identity Disorder,” although people with DID typically have far more personalities than just two, and the primary personality is generally aware of the existence of the others, while Norman had no idea he was actually two people.

 

Strangely, most people assume that Norman was the victim of traumatic abuse, when neither the novel nor Hitchcock’s film make any such overt claims. In the sequels Psycho II and Psycho III, we see Norman living in constant fear that his “insanity” will return. In both films, the term “mental illness” is used. In the 1990 made for TV movie “Psycho IV,” in which Norman tells his story, thereby making the film somewhat a prequel to Hitchcock’s original, his wife gets pregnant without his permission and he is terrified he will create another “monster,” the first reference to mental illness being hereditary.

 

Nonetheless, Psycho, which is generally considered to be the first “slasher” film, became the model for psychosis with the general public. People with psychosis were either dangerous killers or repressed “free spirits” like in One Flew Over the Cuckoo’s Nest.

 

Neither are representative of psychosis. The first type of film uses psychosis as a explanation for the antagonist’s murderous desires while the second downplays psychosis. Both are extremes that don’t reflect reality.

 

So back to the question: what are Jani’s experiences like?

 

I could only speculate until October 18th, 2010.

 

We at home, in Bodhi’s apartment, making dinner. The irony is we have two apartments, one for each child, and yet we are almost never at home except to make dinner and prepare for bed. During the day, Jani cannot stay home for more than a few minutes. Any more than that and she starts to hit. When I ask her why, she replies that she is “bored.” You see, boredom, failure to engage the mind, brings 400 the Cat and 80 the Girl That Likes to Jump Off Buildings back, or living numbers that require medical care for severe injuries, or “The Nothings,” (which is the only name Jani will give), apparently flying dogs that circle above her head. When asked how dogs can fly, Jani can offer no explanation.

 

She does not watch TV, although Bodhi does. However, we keep the TV on to the same channel it has been on since Jani was three, Nick Jr. (formally Noggin, a commercial free Nickelodeon channel serving pre-school age children). Jani doesn’t really watch it but likes having it on in the background. I think it is part of her stability, something from her past she can hold on to.

 

On October 18th, 2010, “Dino Dan” premiered on Nick Jr.

 

Nick Jr’s primary purpose is to prepare children for preschool/kindergarten. The shows are educational, so I expected an educational show about dinosaurs. I wasn’t quite sure how such a show would work for preschoolers as it was live-action, unlike other dinosaur shows.  What was Dan going to do? Teach kids about dinosaurs using fossils? No, that couldn’t possibly work. Dan will probably imagine himself in the time of the dinosaurs, where anthropomorphic dinosaurs talk to Dan and tell them about themselves.

 

But no.

 

Dan doesn’t imagine himself in the time of the dinosaurs.

 

Dan lives in suburban Toronto.

 

And the dinosaurs are not anthropomorphic. They are realistically imaged dinosaurs, Jurassic Park dinosaurs, created by computer.

 

And Dan sees them.

 

Not in a book. Not on a computer screen.

 

But walking through Toronto.

 

He’s seen a Brachiosaurus outside his house.

 

Except that Brachiosaurus lived during the late Jurassic Period about 150 million years ago.

 

He’s seen a Tyrannosaurus Rex patrolling his street. During winter. In the snow.

 

Except T. Rex lived more than 65 million years ago during the Cretaceous Period.

 

And a T. Rex never got close to Toronto. During the late Cretaceous Period, the North American continent was divided into two giant islands by a large shallow sea, called the Western Interior Sea, that covered all of the modern Midwest. Toronto would have been located on the eastern island, called Appalachia, while T. Rex fossils have only been found in the Western United States, in the western island paleontologists call “Laramidia.” Unless T. Rex was capable of thousands of miles over open sea it is unlikely one would appear in what is today modern day Ontario.

 

Oh, and the Cretaceous Period was one of the warmer periods in Earth’s history, so none of the dinosaurs on “Dino Dan” ever would have seen snow.

 

Okay, so Dan’s got an active imagination, right?

 

Maybe. But he uses the scientific method of empiric observation. He conducts experiments, which he numbers and keeps a meticulous record of in his “field journal.” For example, he conducted an experiment to test whether T. Rex located its food primary by smell by leaving a hamburger for it in its treehouse. His observations led him to conclude that the T. Rex was primarily a nocturnal scavenger, not the vicious killer we remember from Jurassic Park.

 

And that’s the problem. He is conducting empirical scientific observation on something that not only has been extinct for millions of years but that no one else can see. He makes model use of the scientific method, but how can one observe the behaviors of something that is not really there?

 

Oh. Another thing. The dinosaurs only seem to be around when Dan is not otherwise engaged in some other activity with his friends or family, although they can distract him. He will utter the name of the dinosaur under his breath when he sees it. His friends will call to him to join them and he will tell them “Just a minute” or “Be right there” and proceed to try to gain scientific data from the dinosaur.

 

Dan lives with his mother and his younger brother, Trek (the location of the father is unknown although in one episode Trek did run into Dan’s room to tell him “Dad is on the phone.”

 

But this is Canada. They don’t look down on single mothers there.

 

In one episode, Dan’s mother is discovers that several pairs of her shoes are missing. She is trying to get Dan and Trek ready for bed, but Dan wants “ten more minutes” because he wants to gather data on the weight of a Dromaeosaurus, a small, feathered dinosaur that lived during the Cretaceous. Dan’s mother thinks he has done enough dinosaur studying for one day but Dan is so earnest that she gives in.

 

Trek asks him what he is doing. Dan starts to answer “I’m tracking a…” but Trek finishes his sentence “a dromaeosaurus” for him, nodding his head like he deals with this everyday. Dan’s face lights up. “Trek! How did you know that?” It seems almost like he is thrilled to discover that maybe his brother sees what he sees. The look of disappointment on his face is palpable when Trek tells him “Our rooms are right next to each other. I can hear everything you say.”

 

So apparently Dan talks to himself.

 

Dan wants to get the dromaeosaurus’s weight, so he puts a dog biscuit on the scale in the bathroom. He also pours baby powder all over the scale so he can track it. Hiding in behind the shower curtain, he sees the dromaeosaurus enter, step onto the scale to eat the treat, and then run out. Dan follows the baby powder tracks left behind to a cabinet under the kitchen sink. Opening it, the dromaeosaurus scampers out, startled, leaving behind all of Dan’s mother’s shoes. Dan’s mother sees them and wants to know what is going on. Dan explains that the dromaeosaurus was building a nest. Dan’s mother, however, blames their pet pug, Doug.

 

She never takes what Dan says seriously, always assuming he is just “playing.”

 

So who did take the shoes. It wasn’t Doug the Pug. And it wasn’t a dromaeosaurus because they’ve been extinct for 75 million years.

 

The only other conclusion, if we accept that dinosaurs cannot be running around modern day Toronto, is that Dan himself took the shoes and put them in the cabinet, but “disassociated” from the memory. As far as he is concerned, it was the dromaeosaurus.

 

So far, we have evidence of visual and auditory hallucinations, thought disorders (despite his scientific mind he treats the dinosaurs he sees as real), disassociative actions he attributes to long dead animals, and social isolation during hallucinatory periods. If it was imagination, he could turn it off, but he can’t. Even when he is called back to do something mundane like eat dinner, take out the garbage, or go to class, the dinosaurs wait for him.

 

But it’s a kid’s show, right? What do you expect, Michael? For them to put Dan on Thorazine?

 

Not at all. At this point, it does not seem like Dan’s hallucinations are interfering with his life. He has friends. He goes to school. He is exhibiting no violence.

 

In short, he is functional.

 

But he is also schizophrenic.

 

He is functional because the dinosaurs are not a threat. They do not make him do dangerous things. Even T. Rex doesn’t eat him (although T. Rex and the other carnivores will go after other dinosaurs, which Dan attempts to stop).

 

Much like how Jani will try to stop Eighty from jumping off a building. Or yell at 400 not to do something bad.

 

His friends and his family treat his schizophrenic symptoms as an “eccentricity” and don’t appear bothered in the least. In fact, they are quite accepting of his obsession, even when it interrupts their hockey game.

 

I don’t know. Maybe that will change when Dan graduates to Degrassi.

 

So you ask me what Jani experiences?

 

Watch “Dino Dan.”

 

That is the closest representation I have seen to what I believe Jani experiences.

 

“Dino Dan” is not just a show that teaches kids about dinosaurs. It is also, perhaps unintentionally, the first realistic portrayal of child onset schizophrenia.

 

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26 comments on “A Schizophrenic in Toronto (Subdivisions)

  1. Thank you
    Well said. I have strugled to understand what it is like inside my son’s head when the voices are there but do not scare him. I don’t believe the are constantly present, they’re more like uninvited house guests that come and go. And when he stopped talking about them almost completly we were left in the dark. But he will still mention them from time to time.

    I have never seen Dino Dan. Nor do I want to now.

    But thanks for the huge insight.

    Amy
    Logan’s Mommy

    P.S. Is the book written like your blogs, or is it in a completly different format??

  2. Pathetic
    Michael…Dino Dan is a schitzophrenic!? Now I’ve heard everything. Yeah, if it were up to you and Jani’s “doctors” EVERY child with any kind of imagination would be put on drugs. Oh wait, no maybe not. Only the ones that could bring you the attention you so desperately seek and could line your pockets with cash. What you are doing to your daughter is criminal and you will pay a heavy price one day. I have been following your story. You daughter is a beautiful, wonderful little girl who only had an overactive imagination before you & those doctors pumped her full of drugs. Now she IS having hallucinations, drug induced ones, you are damaging her brain and could very well kill her. How you have gotten away with this pathetic abuse so far is beyond my wildest dreams. You want her to be sick. It is you and your wife that are delusional, not Jani. What you are doing is pathetic, your blogs are not about Jani, they’re about you and your egotistical ranting. I am praying for Jani, I love her and I DESPISE what you are doing to her.

    Sarah

    Note from Michael: Sarah, you don’t know Jani. You only know her from a few tv shows and my writing. You have never met her, never lived with her. So don’t insult me (or her) saying you “love” her, because you don’t. What you have is an obsessional fixation on her. That’s not love. That’s mental illness.

  3. Pathtic above
    Sarah,

    You have no right to judge you don’t believe in mental illness keep your mouth shut big difference between being ill and playing with imagination. A little FYI I know Jani personally with out those meds she could not function her parents are amazing people and struggle every day with a severely mentally ill child..I also have a severely mentally ill son without his medications he would die I am sure. Please don’t speak until you know the real story which obviously you do not

    Note from Michael: Unlike some others who have claimed to know us, “N” really does know us and Jani. Like I said, I suspect Sarah is mentally ill herself and has developed an obsession about Jani, believing she “loves” her when she doesn’t know her at all. That kind of thinking is a bit dangerous.

  4. To Sarah
    For God’s sake Sarah, Jani is getting the best medical and parental care in the world. Everybody who cares about Jani dislikes the fact that she has to take some serious medications, but that’s just the way it is. Her meds are very carefully monitored. Cut the Schofields a break, will you? And if you’d read the blogs more carefully you’d know that Jani is getting better. We should all work together to support Jani, not tear into her parents. They are doing the best they can.

    Note from Michael: Thanks, Carl, but Sarah has been around for a long time. She has her own issues and I can assure you there is no reasoning with her. I wish her the best. It just scares me when people who don’t know Jani are obsessed enough to say they “love” her when they don’t know her at all beyond a few TV shows and this blog. I suspect Sarah is diagnosed with something but refuses to take meds.

  5. Philosophy is back, good sign.
    I suppose it’s difficult to say whether or not parents (like Dino Dan’s) who regard pervasive hallucinations such as these in such a “kumbaya” (for lack of a better word) manner are making a wise or foolish choice in the end… most likely this varies from family to family. This was how my parents chose to operate and (even taken outside of myriad other choices they made which were directly abusive) I think it was a mistake. I think they should have done something as soon as it became clear that I was talking to myself excessively, self-isolating, and especially when I was taking dictation of letters written to me by non-existent entities! I guess they did ask the parish priest about it and he told them I was talking to angels. Yeah, right.

    If I was in their shoes now, and who knows if I’ll have my own children at this point, not wanting to risk my genetics on them — but if I did, I’d take a similar approach as you are regards to the “mapping” of the various hallucinations by questioning the child about their mannerisms and attempting to participate indirectly in their appearances. I’d figure out which ones were imminent enemies and which ones could be negotiated with, thereby preparing a way out of a psychotic moment. Parents may benefit from taking a more active interest in their child’s imaginary life whether or not it’s reached a pathological level. Good way to get to know who your kids are and what they need from you.

    Most importantly, I’d make sure my child understood he or she was going to have to develop some kind of functional relationship with “common reality” in order to survive out there in the world. I would be tenacious about the basics — hygiene, simple communication skills, and life maintenance prep such as practicing holding down an unskilled job at the right age. I would teach my child how to best navigate the mental health system before a crisis happens and it’s the completely wrong time to get THAT bitter surprise. I would not let my child remain blissfully ignorant about life and then hope he or she would just “figure it out” when 18, college/work, and the traditionally sharp decline in family sheltering comes. I would not let my child imagine that I or anyone in particular would be around forever to help them, though I would help them for as long my forever lasted. I would push them through the fear every day. A lot of making it to sanity is being okay with being extremely afraid.

    Bottom line is, the time to prepare severely mentally ill children for the complex, challenging, and deeply profound path they will walk is when they are children.

    Also, to Sarah and others who are confused about medication, if you have read and parsed the facts of this family’s whole story the strong logical conclusion is that Jani needs it right now. The ideal result of psychiatric medication is like scaffolding that helps a construction crew get closer to the parts of the building that are falling down. In many cases, it’s not ideal and it’s not safe, but there’s no other way to get the job done. I believe that Jani is going to get off her medication one day. If I could do it, I know she can — she has a way better support system than I did. But the time has to be right. Take the scaffolding away from the building too soon and it will surely fall down.

    Note from Michael: I agree 🙂 If Jani makes it like you did (although I know some days are better than others) then I would be thrilled with that.

    At any length, my point in the blog was not to say that Dan has schizophrenia. It was simply to point out that how he is portrayed is the closest fictional representation I have seen to how Jani is.

  6. Hi Sara,

    My child suffers from what you call “over active imagination.” His doctors and we felt it was a mental illness when he far surpassed all his peers and he could no longer function at all. THEN we tried meds. Reluctantly, and beating ourselves up over each and every informed consent we had to sign, and each time we had to hand our child these meds. Clinically, the meds did not work. He is hallucinating just as much as he was before any meds were even discussed. The voices tell him to hurt people, to kill the dog, and to attack without provocation. And now they tell him to burn his group home down on a regular basis. And this was when he was four.
    My child is now a ward of the state as we could not protect him 24/7 from himself, let alone protect the other children in our family.

    I do get a part of where you are coming from, however. My youngest is 4 now and is presenting with some pretty big red flags to her professionals. But when I look at her I see a little girl who needs medical intervention to obtain quality of life. But when her brother was that age, I feared on a daily basis that he would kill the baby. He kept trying to kill a dog twice his size (we rehomed the dog after those attacks). And I have strong memories of me being afraid he would harm or kill me. Looking at my 4 year old now, I finally GET why so many dismiss these types of parental reports. Who in their RIGHT mind could EVER be afraid of a four year old.

    There is only one answer.

    A parent with a psychotic, homicidal, violent child with manic adrenaline strength that goes on for hours on end.

    You would be crazy not to in these rare circumstances.

  7. The Man With The Glowing Red Eyes
    Wonderful analogy for what our kids might be experiencing. And if I could be indulged just a bit…

    When a little girl sees a man with glowing red eyes one of two things happens. If it’s a “good” day, she runs to her Mommy, curls up on her lap in a fetal position and will just lay there, perfectly still for up to several hours sometimes. Shaking in fear because besides just the visual part of what is going on, she hears him telling her to kill her Mommy and her dog or else he will. And she believes that if she stays totally still on her Mommy’s lap the man won’t see her anymore and will go away. On a “bad” day she will start tearing up the house looking for any sharp implement she can possible find, including scaling counters to try to get at the top most cupboards, so she can “be dead and go to heaven to be with her great-grandma” because she knows this relative who passed away long before she was born will keep her safe. After all her middle-name is the same so that must mean she is her protector.

    That is my best understanding of what happens when that little girl sees the man with the glowing red eyes.

    For Sarah, I don’t have a single thing to say in reply other than the work that this family does, day in and day out is to protect Jani, and to work to make her life the best it can be. The same as any parent does for their neuro-typical child. You can criticize them until your blue in the face and your fingers cramp up from typing, but until you walk a day in their shoes you don’t know. Even those of us who have children with similar struggles to Jani’s don’t truly know what it’s like to wake up and go to bed in their home(s). You are right, Jani is a beautiful little girl. What she needs though, is for people to come together and be supportive of what her Mom and Dad are trying so hard to do for her, and for all the kids like her. What she doesn’t need is for someone, even a complete stranger who professes a misguided love for her; what she doesn’t need is for someone to criticize her parents for doing, and sacrificing everything to help her along her life’s path. I would say just go away, but I know you won’t. So I will just ask you to be more respectful to Michael and Susan, and by extension, Bodhi….and yes…Jani.

  8. People like Sarah
    People like Sarah think they are doing what is right but in reality they are harming people. By preaching that mental illness doesn’t exist they are influencing funding and availability of mental health programs. Mental illness is real both in adults and children. I don’t know about the states but in Canada it can take a very long time to get in to see a child psychiatrist if you are not considered an emergency patient (I was only beginning to display symptoms and had to wait 4 months to get in to see the doctor).

  9. Michael, EVERYTHING is a mental illness to you. Even love. Geez, even Dino Dan can’t get a break. I love ALL children, and my heart especially goes out to the ones who are suffering. You put the story out there for people follow and yet when they do follow it, they have an “obsessional fixation”. Oh wait…that’s just if they disagree with you. I have watched “Born Schitzophrenic” and have seen how, even when she was an infant you & your wife fed Jani all this imaginary stuff. I have read your old blog post where you admitted abusing her. Remember that? If not, let me refresh your memory.
    “We tried everything. Positive reinforcement. Negative reinforcement. Hitting her back (I won’t tell you how many people told us that all she needed was a good beating). We took all her toys away. We gave her toys away. We tried starving her. We did EVERYTHING we could to try and break her. Nothing worked.” and then you go on to say,
    “The violence became so bad that at times Susan and I both lost it and hit Jani as hard as we could. We hit in impotent rage.”
    Those are your words, Michael.

    Also, you started giving her anti-psychotic drugs at such a young age without first trying EVERY OTHER option. She was freaking out at school (side affects of Risperdal, no doubt) and you LEFT HER THERE. Left her for the school officials to handle and they had to call the police who escorted your tiny, confused and scared out of her mind little girl to the psych ward. Another time at school she developed Dystonia where half of her body was paralyzed because of the drugs and you CONTINUE to give them to her.
    A huge cocktail of drugs that is doing irreparable harm to her physically & mentally. You say it’s for her own good, that she may hurt herself or others if she doesn’t take them. You somehow justify it to yourself and others but I don’t buy it for a second. You say she would hurt Bodhi and I have only seen her act lovingly to him. You live in 2 seperate apts to “keep Bodhi safe” but yet you tell of a recent time in your blog where Jani is in the bathroom with him & pushes him off the toilet. You are so worried she’ll “kill” him but you left them in the bathroom together???? hmmm. That’s intersting. A lot of what you say does not add up and I am not the oly one noticing.

    Sarah

  10. sarah
    “You say she would hurt Bodhi and I have only [u]seen[/u] her act lovingly to him.” -Sarah
    Uh, Michael, I think you have an uninvited guest in ur home, one that no one sees. Pretty freaky…

    Note from Michael: LOL. That’s funny, Missy. It shows the level of that Sarah’s irrational thinking. What she has seen is her truth.

  11. I know I should be the bigger person here. I should turn off my computer and just go to bed. But I can’t.

    Sarah, there are times in life when a person needs to stand up, and stand for what they know is right. That includes standing up for people whom they know to be good people who are being slashed unfairly. So before I go to bed tonight that’s just what I am going to do.

    You can watch the television shows, you can read blog posts, but you don’t know what it’s like for The Schofield’s. And if you had taken any real time to learn about their life you would have seen the video clip, which is on YouTube that shows Susan and Michael trying to keep Jani from Bodhi while she is in a psychotic break, I think it’s at a park or zoo and Bodhi is in a stroller. You can see the interviewer from 20/20 asking her what she would do if Bodhi were to come over, and Jani responding something to the effect of she would hit him. You can even see that same interviewer trying to help intervene in another situation with Jani trying to hit Bodhi. So yeahhh…really???

    My 6 year old daughter is diagnosed Schizoaffective – Bipolar Subtype. It’s been a long struggle to name the monsters who terrify her. She has attacked me so many times I’ve lost count. I’ve had my wrist broke, and last summer I spent almost the whole summer in long sleeves to cover the bruises from defending myself from assaults that when she came out of her psychotic break would send my baby girl into tears because she was then present enough in our world to realize what she had done. And yes…there were times that while I was keeping myself from being hit repeatedly over the head with cordless phones that I would grab her and hold her as tight as I could to keep her from hurting me even more, or herself. And there were often times that holding ended up with both of us on the floor. To accuse anyone of abusing their child, when they are trying to do nothing but keep everyone in the house safe, is ignorant.

    Over and over I’ve heard the same things. Pickles just needs a good spanking. You are to wishy-washy with her, you let her walk all over you. She needs a firmer hand. You name it, I’ve heard it. I’ve even heard from one psychiatrist that there is nothing wrong with my child other than she is being raised by a single parent with a physical disability and chronic illness. All of that is just as ridiculous as your post above.

    Another concept I can’t put into words is what the wonderful work Susan and Michael have done, and do, for families like mine and others, I can’t put into words the positive impact that’s had for me, and most importantly for my Pickles. Even today as I visited with Pickles at the Residential Treatment Center she is currently at, she was upset because some of the other girls were giving her a bad time about talking to her “ghost friends”, and talking to the design on the carpet in the common area. As I tried to comfort her and make excuses for the other girls, she responded with, “I want to play with Jani because she wouldn’t laugh at me or think I’m weird and crazy”.

    I know all I have said, and all others have said to stand up for this family probably won’t matter a bit to you. It will probably only fuel your hateful responses. But I would amiss not to stand up for Michael, Susan, Bodhi and Jani. And I will continue to speak up for them, the way they speak up for those of us raising children with neurobiological illnesses.

    To you I will leave with this. Go away. Find another hobby than tormenting others you truly know nothing about.

    (PS…Sorry Michael to maybe just add kindling to her fire, but I was peeved at those hateful words and accusations.)

    Note from Michael: Not at all, Kristen. I know your life. You can say whatever you like.

  12. As someone else named Sarah, I would like to apologize for the other one. Good lord. I have left comments a few times and Michael has not always agreed with me, but this lady is something else entirely. Michael, I’m glad you’re still writing – and your compassion toward the “other Sarah” is very gratifying.

    Note from Michael: My “compassion,” if you want to call it that, comes from my belief (although I have no proof of this whatsoever) that the “other Sarah” is probably dealing with her own mental illness (although not schizophrenia) and is unmedicated. I suffer from depression and bipolar 2. We all have something to deal with.

  13. (still the other Sarah) — forgot to add that I’m fascinated with the Dino Dan parallels to child schizophrenia. Very interesting connection to draw.

    Note from Michael: I was only trying to offer some idea of what Jani’s existence is like.

  14. Stop posting this “Sarah crap”, please. I’m sorry you have to deal with people who have antiquated, ignorant attitudes. Is this your purpose for putting her posts up? Everyone knows there are people that don’t believe in science or research, but would rather follow people like Jenny McCarthy. God knows a university trained scientist who dedicates his life to research is no match for an actress/reality TV star/ religious zealot /sarcasm. I guess next time Jani tries to hurt Bodhi (god forbid), you should reach for the camera instead of intervening like any parent would do. Film the violence and post it for Sarah and her ilk to see. However, we both know this would never satisfy the Sarahs of the world. I wonder what happened to her? Do yourself a favour and delete these without reading. It’s your blog, so the whole “freedom of speech” stuff is irrelevant. It really dumbs this place down.

    Note from Michael: I agree, Nancy, but the reason I don’t delete the posts is two-fold. First, if I delete them then it just plays into their paranoia (they already believe that all this is a lie and I am trying to “hide” the truth for financial gain, although as you all know this is hardly been terribly lucrative for us :)) Second, I have no rules regarding posts on this site. I did on the old sight because that was before the private support group existed and I didn’t want people like Sarah to create a hostile environment. Now that the support group exists, I don’t have any restrictions on what can be posted so I feel like it would be unfair to delete her posts. That’s just me. However, if enough people would prefer I not allow her posts through then I have to respect that as well. Clearly I have let her have her say so maybe I should now restrict her posts. I am open to suggestions.

  15. Vote
    My vote is to not post them. They are not productive in any way. I would much rather see time/energy spent on supporting your family and others.

    Keri E

    Note from Michael: Well, she hasn’t posted again since but noted.

  16. Sarah, are you there?
    Sarah, please listen. I believe that you are not a troll and just someone who is really concerned with understandable issues for anyone who A) doesn’t have a lot of personal experience/education regarding severe mental illness and/or B) doesn’t really “get” Michael Schofield. Please try to imbibe the following points and please know that I respect you and am open to discussion.

    1. Michael has admitted to me and others publicly, in the comments on this blog, that he gets a little carried away in his writing at times. He has placed a disclosure on both of his blogs, something to the effect of “this shall be taken as a representation of my emotional state at the time of writing, NOT fact.” A reasonable reader MUST consider this. Just because this blog is focused on a darker subject matter doesn’t mean Michael is not entitled to his own creativity and personal expression… and if you ask him about any of this yourself, he will not attempt to evade. He will admit he is a passionate and sometimes belligerent man. He will make his points for this. He will take ownership. I respect him immensely for doing so EVEN when we disagree.

    2. Sarah, it is not abuse for parents who were initially totally in the dark about the nature of their child’s condition to have temporary breakdown moments after years alone, struggling 24/7 with the ramifications of psychosis. Jani was not doing this with any intention, of course, but what she was doing before the medication to Bodhi and her parents was the abuse. Children can be a lot more abusive than all of us may want to believe. Ill children can and do hurt and sometimes even kill their parents. I’ve been there, done that, and I don’t blame her at all, but I also don’t blame her parents for protecting themselves during the darker times. Also, this was what, 2, 3 years ago? Things have gotten better. BECAUSE OF THE MEDICATION.

    You just can’t expect other people to be perfect, Sarah. There is no such thing.

    Michael: My vote is let her post. Please. I agree with you that she is most likely in a dark place and needs some help. She is not trying to be hateful. Awareness and perception are so incredibly difficult for anyone who doesn’t KNOW theirs is twisted, and our current society sets it up so most who need to know don’t. She needs time and a minimization of shame to help raise her consciousness… slowly.

    Note from Michael: I have no personal problem with her posts. My only frustration is I have answered her “concerns” numerous times and it never changes anything. She is convinced that I am “hurting” Jani and nothing I say seems to change that. I have explained that old “About Me” post from the old http://www.januaryfirst.org blog time and time again and I get tired of saying the same thing over and over again: that the “starvation” was my overly dramatic way of saying that when Jani refused to eat the foods we provided we should not give in to what she wanted (because the “experts” then believed she was just “strong willed,” that the “hitting as hard as we could” is obviously hyperbole because given all the doctors, social workers, and yes, even CPS workers and police who have seen Jani over the course of her life, I would hope someone would notice that. We made the mistake of hitting her back in frustration after weeks and months of getting hit and attacked constantly for no reason we could discern. It amounted to a spanking, yet I still regret it and will always regret it. It was just a human reaction to being attacked all the time. I have explained all this Sarah time and time again but she remains convinced I am lying and doing all this for “attention” or financial gain, none of which is true. Actually, this is a hard life. I wouldn’t wish it on anyone.

  17. I agree with probably not posting. If she were trying to contribute something meaningful by her remarks, trying to help or offer her opinion it would be one thing, but I think that all she’s trying to do is attack you with hateful posts for some reason. Like you said, probably dealing with issues of her own, and unmedicated. Posting her rants probably validates them to her. If all she continues to do is just post these same types of remarks over and over, I wouldn’t give her the platform for it any more. Serves no purpose, and makes the rest of us mad.

    Note from Michael: I see your point, but if I censor her posts then that also feeds her paranoia that I am concealing what she believes to be the truth. We have to remember that words can’t hurt. It is mental illness we fight, not each other. I also think it would not be right of me, as an advocate of mental health, to treat Sarah as less than human simply because in her illness she (I feel) irrationally hates me. Ultimately, what is the difference between her attacks on me and back when Jani used to attack me? Both are ill and both are deserving of compassion.

  18. I just want to add, in reference to Sarah’s accusations of “child abuse”, that my parents also had a difficult time with me when I was a toddler. It was nothing near as severe as what Jani has endured, but I was in a lot of physical pain, which irresponsible doctors told my parents was “not real”, and was just me trying to manipulate them. They were advised to punish me (sometimes severely) and I was hit a few times and yelled at or sent to time-out for being in pain and for crying.

    Was that the right approach? Not remotely. Have I forgiven them? Yeah, I’m over it. It’s fricking hard to be a parent, and every parent in the world makes serious mistakes. That’s life. Jani’s parents are trying everything they can, and early on they had nothing to go with but the advice they were given. They very fact that Michael admits to making these mistakes proves that he’s aware they were the wrong decisions at the time.

    Sarah, I get the feeling you are not a parent. It’s easy to be ultra critical when you haven’t gone through the whole parenting thing. I haven’t either, but then again, I’m not irrational and extremist.

  19. To Sarah
    First, it is natural for one to become increasingly frustrated and angry at someone’s behavior, especially when the behavior is not understood. There are limits to everyone’s patience, and it is unrealistic to expect that Jani’s parents should always be able to calmly and easily deal with her relentless need for stimulation and frequent violence towards them and others. Now that there is a known reason for this behavior, and because it is less frequent (because of the medications!), Jani’s parents are better able to handle the symptoms of her mental illness.

    Not only that, but I feel like they are constantly trying to have a more accurate understanding of what Jani is experiencing – that is, as far as I know, the purpose of this blog. One of the best ways to understand more about something is to write about it or explain it to someone else, in my experience, and I see this blog as nothing more than that. You have obviously read back pretty far into the blog, and I am sure you can see that a lot of it is different explanations and analogies for schizophrenia. In fact, in this particular blog entry, Michael is using Dino Dan’s character as a means to better understand and explain what Jani experiences. The point was not to simply show that Dino Dan might be schizophrenic, though if you do a Google search for “Dino Dan” and “schizophrenia,” you will see that Michael is not the only one to point that out.

    You have some interesting points, Sarah. You claim that Jani started hallucinating after and because of the medications, whereas before, she just had an overactive imagination. I would be tempted to agree with you about the overactive imagination, because in some instances, it actually does seem like she is pretending – she is a young girl and it seems natural for her to do so. When she draws pictures of “400 the Cat” and “Wednesday the Rat,” it almost seems typical. However, I am not sure if you have seen the video of Jani as an infant, with her eyes fixed on something on the ceiling, watching it move in circles. That’s not an overactive imagination. She was an infant. This is setting aside the violence, the lack of emotion, and withdrawing socially which are also common characteristics of schizophrenics.

    And Sarah, I know that Jani’s parents are advocates for mentally ill individuals and their families, and to you (and others) it may seem from this that they want her to be “sick” with schizophrenia, but it doesn’t seem that way at all to me. Even though they support people and try to provide others with an understanding of mental illness, this does not mean they do not want Jani or others to get better (and by “get better” I mean to have more control over their minds and behaviors despite their illnesses, since there is no cure).

    We have very partial understandings of what the Schofields go through, and those understandings are not a good basis for making accusations or judgments about them. For the few examples of what you call “abuse” in the blog, there are many, many more examples of Jani’s parents doing everything within their ability to make sure Jani and Bodhi are happy – and safe. It doesn’t mean they are perfect and I have never seen them claim to be.

  20. I am very touched by your story and struggles. This is a world that I grew up in, surrounded by people who saw things, several schizophrenics and bipolar close family members who had ideas about themselves, mental illness all around me from the moment I was born.

    Now I am studying myself to be a ‘trans-personal art therapist’ which follows Jungan methods of counselling and integrating spirituality (whatever religion that comes from) and it interests me to see the kind of world you’re a part of… because, even if you can’t see her world or what she sees, you live in it day to day, blind and deaf to it maybe, but still existing and interacting with it.

    Carl Jung wrote something called a ‘Red Book’ during his stage of hallucinations and delusions. He drew and wrote down everything, absolutely everything, taking himself on a journey that spanned weird and sometimes disturbing places. By the end of it, his mind had recovered (though I’m not suggesting that’s something Jani might find as he was not born schizophrenic) he suggested that everyone should have a ‘Red Book’ where they kept a personal collection of their visions, hallucinations, delusions, whatever it was that they felt, saw or heard that no one else had. Like a storybook.
    I guess what I’m suggesting is that instead of trying to explain what’s going on in her head, let her write her own story down or draw it, or make sculptures, or dance it, or sing it, or whatever she likes… Jani’s ‘Red book’.

    I saw your story on an Oprah rerun just now and came to see how you were all doing. Anyway… I hope I didn’t cause any offense with my suggestion… it isn’t something I’d suggest if I wasn’t willing to try it with my own family members who are older… I wish I could support you financially if that was possible. Your family has been through a very hard time and please know that you are in my family’s prayers… we are thinking of you all, kids but also mum and dad.

    Note from Michael: Thank you. I don’t know that Jani is ready to write down everything she experiences. First there is the practical reasons of she is just getting used to writing now. Then there is the fact that writing is an immense struggle for her because it requires blocking out the hallucinations and focusing on our world. One day, I think, but not yet. She is still a child trying to live with schizophrenia. I think a lot of these ideas are valid but for the future when she is ready for them. Right now she is doing pretty well and I don’t want to rock the boat.

  21. I think it’s a good idea to post the Sarah comments. As I read her words, I naturally thought “What an idiot, to be presumptuous enough to to think she has more knowledge of what’s best for a child she has never met than her family or doctors” but then I was forced to reflect on my own reactions to reading your blogs. Suddenly, all the times I have disagreed with what you (Michael) have said or done seemed foolish. I’m not any better than Sarah if I pass judgment on your situation because I really don’t know what it is like to be in your shoes. I may come from a family with a child with metal illness and developmental delays, but I am only an expert on my own family’s dynamics, not yours.
    Sometimes seeing such an extreme example of what is wrong can help me look within myself to see if I act in similar ways.
    So thank you for leaving the comments and thank you for continuing to share your life with the world. Let the haters hate, they are only poisoning their own spirits.

    Note from Michael: I haven’t blocked her at all. She just hasn’t posted again. I guess she said her piece and didn’t get the reaction she was looking for. Actually, the only thing that bothered me was this idea that she “loves” Jani, and by further implication, more than me. That is impossible.

  22. I found this blog to be very interesting – my best friend’s sister commented that Dino Dan was schizophrenic one day while her two year old son was watching him on TV. I hadn’t ever seen the show before, but was a bit quizzical about his behaviors myself!

    I’m sorry that someone so rude is commenting on your blog like that. Obviously, Sarah was not fortunate enough to have the amazing support system that you, your wife, and others have provided for Jani. Therefore, she feels the need to lash out with such comments that have no factual backing.

    Hang in there, wishing you all the best!

  23. I’m a long-time lurker here to set you right! Not about Jani, though, because she is your area of expertise. I know you deal with a lot of backseat parents (some of whom with rather intense personal agendas, it would seem), and I don’t intend to be one of them.

    I’m actually going to be the dorky jerk who takes issue with your characterization of social constructionism. The proposition that reality is a social construction isn’t a denial of an objective reality at all, but rather a statement that objective reality is only accessible to humans via perception, which is socially generated. “Reality” in this sense (not in the sense of an objective reality) is the product of interaction between an objective world and an intersubjectively-generated system of meanings with which we can interpret that world. So, if a tree falls in the forest and no one is there to hear it, of course it makes a sound. But, to the extent that humans ARE there to hear it, it only makes sense to us using concepts and categories acquired socially. None of us get to experience objective reality directly, we have to perceive it. To the extent that our ability to perceive stems from social processes (psychosis is no exception — most hallucinations are derived from social learning, like Jani’s numbers and animals), our reality is socially constructed.

    I’m sure that you are thrilled that I shared that. [sarcastic face]

    -Mega love from a local grad student/instructor who apparently has too few students, otherwise she wouldn’t be giving completely unsolicited lectures on the internet.

    Note from Michael: Ah, happy flashbacks to grad school where I actually got to have conversations like this. Thanks.