IamA Michael Schofield, father of Jani Schofield, diagnosed with child-onset schizophrenia at age 6 and author of January First. AMA!

Not one Prison Break joke.

Yeah, there was one somewhere.

There have been numerous studies showing compelling data that Schizophrenia is caused by "pieces of chromosomes" missing...lengths varying approx. 10,000 - 5,000,000 bases in length...variation in the 13q gene specifically is just one example

Have you ever considered Gene studies? it would mean both you and your wife have to undergo procedures alongside both your children...you have an unprecedented case...your son has autism...(another genetic variation caused by the same principle)...

Its a really exciting time in the BioTechnology fields of the nation's top schools. Harvard, Stanford, UCLA, Chicago etc...you could help millions in the future...DNA biopsy is the future

We have. Duke University took all of our blood and sequenced our genomes. Specifically, they were looking for "deletion events," sequences of DNA that Susan and I have Jani or Bodhi do not. There are deletion events but they don't know what they mean and they are not necessarily in areas associated with schizophrenia. We did learn that Bodhi's deletion events and Jani's are NOT similar.

Did it hurt getting so many tattoos all over your body? Also, how was prison and do you think your escape was worth it?

Funny. I still get that occasionally, although the character's name was Michael SCOFIELD. No "h."

Hi Mr. Schofield! Seeing the television specials about Jani is one of the things that really ignited my interest in child psychology/psychopathology.

Do you think the television crews have an affect on her symptoms? Are they more pronounced with all the people around? Or is there anything that DOES have an affect on her symptoms other than her medication?

Actually, in my observation, her symptoms were LESS pronounced when television crews were around. Jani has always been (except when she was acutely psychotic) very social and so she loves having the camera crews around. She talks to them off camera while they are setting up, shows them her turtles. No, TV crews have never come close to seeing her worst symptoms. As for what else can impact her symptoms positively: constant activity. She has to be going, going, going all the time.

Thanks for the insight! Can we expect another TV update soon? Also what are the turtles' names?

Right now, we have nothing planned for TV but Discovery usually doesn't decide if they want to do another special until February for Psych Week in May or June of each year.

Have you resolved the apartment/living situation that was recently dumped on your family?

Unfortunately, no. That is still on-going. We offered to move to another floorplan that is over the garages but the manager won't offer us a one year lease. She is willing to let us move to this apartment and even holding it for us but only on a month to month lease, which we can't do because it gives us no legal protection. If she would offer the alternate apartment with a one year lease then we would accept it. I have also been looking at three bedroom apartments (because Bodhi needs his own room) and houses for rent but everything is more expensive than I can afford. We also have to stay in the Newhall School District for Bodhi and within the Santa Clarita Valley for Jani so they can continue in the schools they are doing so well in. Susan and fought so long and hard to get what they needed from the school district I just can't start over again.

I'm late to this but have read your books and blog on and off for a few years, currently I am behind. What happened with your living situation?

We are still living in the one two bedroom apartment that we moved into in October 2011 after leaving the two separate apartments for each child.

Do you feel that other parents appreciate what exactly schizophrenia is, or do you find a lot of people assuming that Jani's behaviour is the result of overencouraging her imagination or something of the sort?

I think most people have no idea what schizophrenia really is. I didn't know what it was. Sure, I had heard the word but I didn't understand the illness. That is one of the greatest challenges: how do you explain an illness that manifests as behavior? I think people just assume she is not disciplined enough.

Yeah, I get the impression that public awareness isn't the greatest, even here in the UK. This might be a bit close to the bone, but do you ever encounter people who have the idea from horror movies that schizophrenia is synonymous with murder and violence? Or is it mostly just not really knowing what to expect? Thanks for the reply.

I think people confuse schizophrenia with "disassociative identity disorder," formally known as "Multiple Personality Disorder Syndrome." There is also a misconception that schizophrenia or psychosis is caused by "trauma," which of course Hollywood reinforces because it makes for a good story. The truth is that those who experience severe trauma do not become psychotic permanently like with schizophrenia. I think the single worst movie ever was "One Flew Over the Cuckoo's Nest," which created this conception that psychiatry was out to "repress the human spirit and individuality." The goal of psychiatry is to RETURN people to the individuals they were, to give them control of their lives.

Hi Mr. Schofield. I'm currently in school studying to become a psychiatrist. I feel as though there is such a stigma with mental illness in today's society. Do you feel this way as well? Do you believe that people treat your children differently than a child with a physical problem? Thank you for doing this AMA and God bless your family.

Absolutely. I would like to see neurology and psychiatry merge as they both deal with the biological brain. That would go a long way to making psychiatric illnesses taken seriously as physical illnesses.

How much understanding does Jani have of her illness? Does she recognize when she starts to go "down hill"? What about Bodhi?

Jani has as much understanding as we have been able to reinforce. She knows she has schizophrenia. She knows what this means to her. She explains it as "I see and hear things other people don't see." The most difficult part for her is not the hallucinations (which are pretty benign) but the thought disorder. Personally, I feel thought disorder is the worst part of psychosis. Basically, thought disorder is when you believe something is right when it is wrong and vice versa. Right now, after she gets her medication, say if we were a little late, afterward she will recognize she needed it but it is going to take time and maturity for her to recognize when her thoughts aren't logical. People like Elyn Saks inspire me that that is possible. As for Bodhi, Bodhi knows there is something wrong. He wants to be comforted. But neither he nor we nor the doctors really know what it is other than autism. His current diagnosis is autism with intermittent explosive disorder.

How does Jani react to the regular blood tests that are required with Clozapine.

She doesn't like them. Not that I blame her. I hate that she has to get them but the positive is that we would catch any illness or side-effect very quickly. For her, the anticipation is worst than the event. She will go in happily, chat to the techs. What is unusual is she doesn't react to the needle going in, even though she insists on watching it. She only starts screaming AFTER the needle is withdrawn and she sees the sight of her own blood. Makes me worried how she is going to react when she gets her period. So she doesn't like them but knows she needs them and knows that Clozapine has been the best medication for her. She is a trooper. I am SO glad it is not once a week anymore like it was in 2009 when she started the clozapine.

Any comfort to the period worry, i have always been terrified of blood, faint at the sight of it, throw up when its drawn etc, never once has my period scared me. Just explain to her that this one thing is natural.

I hope so. It still worries me, mostly because of Jani's struggles with hygiene anyway. Her being able to full take care of her hygiene needs would be a huge step and relief for me.

What is the most creative or effective strategy you guys have for working with Jani (e.g. getting her to do what you want her to do, or getting her to calm down, etc.)?

For example, I had the opportunity to teach Aikido to children (age 6-9), and found that I could inspire them to behave or work together when I made a task into a game or competition instead of just being a disciplinarian (because that doesn't work well for some children). I was just curious to see what you've learned in working with someone as unique as Jani. :)

Yeah, the "Don't do that!" doesn't generally work, although I still fall into it sometimes. Generally, the most important thing is for me to stay calm and not escalate it. Maybe she needs space. Right now she is not doing anything that is dangerous. Her favorite songs help her calm down.

What music calms her? What are her faves?

Right now, she loves "Royals" by Lorde. She also loves Florence and the Machine, anything by Blink-182 (she has a crush on Travis Barker), Passion Pit's "Take a Walk," Capital Cities "Safe and Sound," M83's "Midnight City" Naked and Famous "Young Blood" and I am sure many many others I am forgetting. I have to say I love her taste in music. She sings along with the radio (she loves to sing) and plays her favorite videos on YouTube. Music gives her a language to communicate with although most of her friends haven't quite caught up with her tastes.

What attribute of Jani's are you most impressed by?

Without question, her strength and kindness (okay, that is two). I am always saying to people "Imagine what it would be like if you had no control over your actions and your brain was constantly working against you?" How awful is that? Her own brain is betraying her. She has gone through so much in her young life that it would have been so easy to just give up. Her fight to create a life for herself inspires me. She is also still capable of human kindness. I guess a positive of schizophrenia is she doesn't discriminate against other kids.

I get that whole brain working against you thing. I have depression and severe delusions that people are trying to brainwash me by putting thoughts into my head. It's scary, but managable. The Risperdal helps.

I am glad you have found a medication that helps. I think one of the big misconceptions in that medication is going to take EVERYTHING away. It doesn't. It just helps to keep the symptoms manageable.

I just wanted to say that you and your family are such an inspiration to me. It's amazing how you have been able to stay so strong throughout your journey. Is there anything that we can do to help the people with mental illnesses? Also, as Jani gets older is she getting better at maintaining her psychosis?

Yes. Don't be afraid of them! Don't assume you have to know what you are doing. I don't. Just talk to them. Engage them. Human kindness goes a long way.

I remember hearing about your story. I think I either read it or heard it on NPR.

Let me give some back story to my question. I am a high school teacher who deals with some emotionally disturbed children. Now I understand their plight as I have seen severe mental illness in both family and friends as well s's studied it at length. However, there are people who just think they're faking it or just broken.

My question is, how would you explain schizophrenia in children to someone who thinks it's "fake" or misunderstands it as MPD?

I use the concept of the "cattle prod." If I were to strike you with a cattle prod, you would have no control over your own body or actions anymore. All you would be trying to do is get away. For these kids, it is like they have a cattle prod inside their head that can be activated at any moment. When they lash out, it is in response to whatever impulse is in their brain.

And everyday I see kids trying not to inflict pain. When they scream "Get the f*ck away from me!" or go to the ground, they are trying to keep from lashing out.

But the main reason it is not a fake is that why would any child want to be punished over and over again? It is not in our nature. These kids get nothing positive out of their "behavior." There is no "win" for them.

I've never read your book or heard anything about it until now but as someone who was diagnosed with a mental issue (Bipolar) at a young age and it turned out to be wrong: did you and your family ever have doubts that she really was schizophrenic? Or did you agree with the doctor 100%?

Oh, there are always doubts. The doctors never said "We are absolutely positive about this or that!" Psychiatrists generally don't do that anymore. It is an educated guess based on symptoms and response to medications. I guess you say Jani is "schizophrenic" by default because there is no other diagnosis that works but no diagnosis is spot on. No two people with schizophrenia or bipolar or any other serious mental illness will have exactly the same symptoms. Personally, I think all these mental illnesses are on a spectrum. Do I think that there might be nothing wrong with Jani? No, because I have seen what happens without the medications. But there is always doubt about the diagnosis.

Michael, I have watched the specials about Jani from the beginning and read your book.

Have you ever thought about how, with treatment advances in mental health care every day, Jani may be stable enough as an adult to be able to function in neurotypical society and how having every bit of her mental health past publicized like this may negatively effect her ability to get a job? How prospective employers will be able to google her name and know everything about her, and feel she is a bad employment choice because of all of her personal information that you have made so readily available about her?

Yes, I think about it and here is my answer. First, it is hard to see that she will be stable enough to care what I have said about her, but if she is, then I will be happy for her. "Advances" are not happening that fast. There is almost no funding for mental illness research. I don't see any major advances on the horizons. As for whether this publicity will negatively affect her ability to live a "normal" life and get a job, if I have my way, no. The fact that Jani has a serious mental illness should not matter. By being afraid of what she might "lose," we inadvertently reinforce the stigma that there is something wrong with being mentally ill, which would be like saying there is something wrong with being a different skin color or gay. You can't control that. It is important to me that before I die mental illness is not stigmatized any more than diabetes. Would you not hire someone because they fought cancer? No. So why should it be any different for mental illness?

Michael, when looking you up I found the following criticism of your book, saying

The most remarkable and revealing aspect of this book is all the stuff that the author has chosen to leave out of it. Michael Schofield left out of this book an admission that he and Jani’s mother both hit Jani with considerable force on at least one occasion. This account was once published in his old blog, but was apparently not carried over to his new blog or his book, but many commentators have not forgotten what has been written and once existed in the public domain. I’m not one to take issue with a parent hitting a child. In a perfect world no one would hit anyone else, but we don’t live in a perfect world, and some little tykes do behave as though they are junior envoys from Hell. Of course, no parent or adult should beat the crap out of a young, small child, obviously, and I take issue with that, if it did happen. As a book reviewer my gravest objection to Michael Schofield’s omission of his account of him and wife attacking Jani is that it appears to be a part of a strategy to skew the truth in the writing of the book. Throughout the book there are descriptions of shocking violence by Jani, descriptions that frankly strain credulity because it is hard to understand how a grown man could be beat up and injured time and time again by a young child. Every time in these accounts of violence Michael took great pains to portray himself as taking great care to avoid harming or hurting Jani while defending himself and others from ferocious violence. In the book Michael Schofield portrayed himself as a fatherly punching-bag exercising a Ghandi-like avoidance of inflicting violence, but readers of his old blog might recall an admission that “…Susan and I both lost it and hit Jani as hard as we could.” There couldn’t be a bigger gulf between the way the author depicted his own behaviour in the old blog and in the book, and regardless of which account is closer to the truth, at least one account must be a conscious deception.

How do you respond to this? Do you think that abuse may be why she acts out? Also, is she really so violent that Bodhi must stay in a different apartment as many media outlets have said? I heard from another source that Jani never hit Bodhi until 2007? Can you clear some of this up for me? Thanks.

Also here is where I heard I from 1 and 2

What they are referring to is the original "about me" section of my old blog. When I started writing, long before we any publicity, I expected what I was dealing with then, which was people, even doctors, who felt that Jani's issues were caused by a "lack of discipline." A lot of people used to tell us that all Jani needed was a good spanking. What I specifically wrote was something to the effect of "Sometimes, in frustration, Susan and I hit Jani as hard as we could." I have a tendency to be a bit hyperbolic in my writing. I was referring to one or two occasions where after being hit all day by Jani we lost it and spanked her. Once it became clear that Jani could not control her actions, I felt incredibly guilty about that and that guilt motivated what I wrote.

But to clarify:

1. We never spanked or struck Jani until she became violent with us in 2008.

2. We obviously did not hit her "as hard as we could." Given the sheer number of doctors she has seen, social workers, etc, plus her regular pediatrician appointments, that would be noticed, not to mention she was 40 pounds and I was 180. If that were true, I could have killed her.

3. In the book, I actually went out of my way to play down Jani's violence. Only one chapter is dedicated to it and every action by Jani in the book was absolutely true.

4. In early 2009 the Department of Child and Family Services told us that Bodhi must be protected from Jani until he was five years old. Our choice was either to send her to out of state residential or Susan's idea of the two apartments. Bodhi could not explore his environment without Jani potentially raging at him. We had to separate. The violence was real. Jani attacked the DCFS worker in UCLA the first time she went to met her.

5. Finally, Jani never actually managed to hit Bodhi because we never gave her the chance. We worked all the time to keep him safe until the two apartments.

Is it hard to get Jani to take her medication?

Not really, at least right now. Sometimes she will complain about having to take them and pretend to run away and hide in her room but she doesn't physically resist. Hopefully this will continue because as she gets older there is no way to physically force her to take them. Luckily for us and her, she has never really resisted. She is good about taking her medications. She knows the names of each one, what they do, and how much she is supposed to take (although we still administer them).

She knows the names of each one, what they do, and how much she is supposed to take (although we still administer them).

Parenting, you're doing it right.

She has to because one day my wife Susan and I will be gone and she will still have to take care of herself.

It's just great to hear that you two are getting her started on that aspect, responsibility, early. I worked at a mental health clinic for a few years and I was always surprised how many people don't know what their medication is or why they are prescribed it.

So, thank you, for being a good parent. :)

I think it is our responsibility to teach them. I too am amazed by how many kids in Jani's special education day class don't know their diagnosis or what the meds are that they take.

I think the bigger challenge as she gets older will be for her to remember to take them. That is why some adults choose to get monthly or weekly injections of their medications.

What was the reason for Jani's and Bodhi's most recent hospitalizations?

We were worried about Bodhi's safety after in one of his states he pushed back in a chair and landed on his head. Jani was talking about death a lot, specifically deaths of hallucinations. We also wanted a EEG and MRI done of both. We wanted to rule out seizures for Bodhi. He got the EEG but UCLA Neuro would not do the MRIs.

Michael. I have thought of your family often. You are a wonderful father. You and your wife have all my admiration for all you have done. I missed Bodhi's diagnosis and your book. It makes me so happy that January is kind to her turtles and I'd love to read more about that in your book. You and your family are amazing, and I feel hopeful for January and I will always think of you four people.You all deserve the very best. I can't say enough how your story moves me. The love you show, despite the roadblocks thrown in your way attest to your goodness. I admire you, your wife and January for your strength and bravery. I love you all.

Thank you. The turtles only get mentioned in the epilogue because the main story ends in the summer of 2009. It was hard to figure out how to end a story that really doesn't have an ending. The first turtle arrived in 2010 as a gift and then we adopted 15 more, of which 13 are still alive. Technically, aquariums are not allowed in apartment complex, nor are turtles because they are considered "exotic." So I have to walk a fine line. If management found out, we would definitely have to move because I am not going to deny Jani her pets which ground her in our reality just to live somewhere.

It's a huge undertaking...but wondering if you can envision a sequel to January First?

I can envision it. I think there is a natural second story of Jani learning to live with her illness and gaining some control over it. But whether I actually get to write it depends on the sales of January First. It has sold okay for a rookie writer, but not enough where Random House is asking for a sequel. Like everything, money determines everything.

I know you said in an earlier answer that Bohdi has a current diagnosis of autism and intermitent explosive disorder - I was wondering if you see a significant difference in the ways he acts compared to Jani at that age? Also, as a second question, would you say that having to deal with this has contributed anything positive to yours, or indeed Jan or Bohdi's, lives? Thanks so much for doing this AMA.

Yes, they are very different. Jani was never afraid. Bodhi seems to be terrified by things we can't see. Bodhi slept. Jani never did (until she was medicated). Jani was always extremely verbal and able to articulate what she was experiencing. Bodhi is not as verbal so it is harder to know what is going on inside of him.

The positives that we have gotten from this life is that our lives have meaning in ways they would not have otherwise would have. I feel like I have a duty, not just to Jani and Bodhi but to all children like them. For Jani, it makes her feel good to know she is an inspiration to so many.

I've watched your little guy on YouTube. How verbal is Bodhi? Can he answer "why" or "how" questions? Does he reach out to Jani to play, joke around or comment to her about his surroundings?

Yes, he does. He is very social. He can answer simple questions, make simple statements and does want to play with Jani.

What do you view as the most important support you've received? And, if I might ask, does Jani have any thoughts on what she might like to be when she grows up?

Without question, contact from other parents going through the same thing. We are far from the only child with child onset schizophrenia. Jani still says she wants to be a vet when she grows up. I support whatever she wants to do and can do. Being a college instructor, I know college is tough so I am not going to push her to go, nor do I know if she could get through it.

I understand that you have started a foundation in Jani's name, can you tell us more about that?

The Jani Foundation provides socialization events for the kids, grades K-6, in the Santa Clarita SELPA, which stands for "Special Education Local Plan Area." Several school districts participate in the SELPA, each handling a different area of special education. Newhall handles SED, or "Severely Emotionally Disturbed," which is where severely mentally ill kids get sent. It is vital that these kids have positive experiences in the community and that the community get to know them so that as they get older and if they have an episode, it won't end with a police shooting. So our job is to take them out and offer them and their families outings and events just for them in the community.

I need to take a quick break but I will be back to answer more questions in about 10 minutes.

I started /r/troubledteens and I want people to know what a powerful advocate you are. You and your wife, Susan Schofield, have done extensive work to keep other kids safe from abuse by the Troubled Teen Industry; both of you are true heroes in my book. I'm excited to see you on reddit, welcome! We are glad you are here.

Can you tell us about your experience with institutionalization, both when it has been helpful for Jani, and when it has been harmful?

We refused to do institutionalization. First, we do not see how isolation from society benefits either a mentally ill child or society. Second, there is no chronic care system in America anymore. The state hospitals have been replaced by unregulated, for profit "residential treatment centers" where kids have been sexually abused, physically abused, maltreated, and killed. The answer to any problem is not to send the child off but to marshal the community to care for our own.

I agree completely! I only mentioned benefits because I believe (in a few rare instances) it has been helpful for Jani to be briefly hospitalized so she stabilize and return home. I should have been more careful in my wording.

What kind of pressures have you faced to institutionalize her, and how did find out that was not the answer?

Oh, there is constant pressure to place her in one of the so-called "residential treatment centers." The last time the Department of Mental Health reviewed her in 2010, they STILL recommended residential. That is all they have ever done. So has UCLA, although they respect our decision not to. My first warning sign was that all the discussion of the "benefits" of residential focused on the break it would give us (me and Susan). There was nothing about how it would benefit Jani. Since the only options were out of state, that was a non-starter for us. I could not send her out of state. Family is part of recovery and RTCs give lip service to it but ignore it. If I thought it would help her but how would help her to be separated from the only people who were at that time grounding her in reality? Next, we learned from other parents whose children had been in these facilities the abuse that happens. Older kids are in charge of younger kids and that leads to abuse. If the police are called, they don't investigate it because these kids are written off as "bad kids." But the real kicker is that many of them wouldn't take Jani "until she was more stable." I replied, "Well, when she more stable she wouldn't have to go!" So I really think that the kids in RTCs don't need to be there. Most of them aren't even mentally ill. Maybe they smoked a joint and their parents freaked out and sent them to wilderness camp in Utah or Jamaica. I would like to see RTCs closed down and the establishment of actual MEDICAL facilities like the NIMH has for the treatment of mental illness.

Thank you for the questions, everybody! I have to go now but I will check in every so often over the next few days to try and answer any remaining questions.

I saw videos of your family on YouTube. I have to say you and your wife are very brave and I was in awe to see the depths of your love, courage and strength to endure and adapt in the face of such a difficult journey. I have great respect for the both of you and the challenges you have chosen to take on and face for the sake of your family and children. One thing i did wonder was i learned about your experiences was if you worry about how your children will get along with each other and relate to/bond with eachother as they get older? Were/are you worried the younger one might grow up to fear his elder sister due to her violent episodes?

In our case, no. Now Bodhi can take care of himself and Jani is not really violent anymore. But we also had the luxury of being able to split into two different apartments, one for each child, with my wife and I going back and forth. I think it might have been different. Bodhi also has his own issues so it is not like he is neurotypical and resents Jani. I think it is harder if you have one child who is neurotypical.

yeah. i have a friend who grew up with a younger brother who had issues. they are both adults now and i think my friend really does fear his brother on some level. Definitely was a strain on his life and personal growth. Plus the dad left the home because it was too tough for him so it was only his mom. that is another reason I think you guys are such amazing parents. Your kids are very lucky to have you.

Thank you. Ultimately, it comes down to Susan and I have total commitment to our children and to the cause of mental illness in children and adults. We embraced this life rather than trying to run from it. Because there is no running from it.

Are you ever worried that because Jani was diagnosed with schizophrenia so early in life that it has become a major part of her identity or do you think her self-image and identity are separate from the disease?

Her self image is not defined by schizophrenia. She is Jani. She is very firm on that. However, it has become almost my entire identity. I think it terms of altering self-image it has affected me and Susan more than Jani. Jani will define herself how she wants to define herself. If she wants to be an advocate, great. If not, that's okay too.

Mr. Schofield, I want to say how much I admire you and your family. I have the book, January First and have seen the programs about Jani. She is such a special girl. I am hoping she finds her niche in life. I have depression and was wondering if you have any websites I could check out? Or tips for me. I was diagnosed at 13, about 10 years ago. I admire you and your wife so much!! Stay strong and tell Jani she has a supporter in Georgia :)

I am reluctant to give links because so often they are useless. When you need help, it is hard to find. What kind of help are you looking for with your depression? I suffer from depression/bipolar 2 myself. The challenge is find a psychiatrist you feel comfortable with (which can take a while), finding a medication that works for you, and finding a "passion" in life that working on will give you a reason to keep going. I am waiting for Jani to find her "passion." We all need something to work toward.

Thank you so much for the response. And I understand the links. On the show about Jani, you and your wife had created a support group with kids like Jani. I'd love to be apart of something like that. I go to a chat room with a focus on handling depression but the face-to-face would be more beneficial. Thanks again :)

You can message me and I will try to find local people in our support network for you.

http://psychcentral.com/

thank you so much. My last question, how is Bodhi (I hope I spelled his name correctly)?

Bodhi is still struggling. It is hard to keep him safe from himself when he goes into these panicked states.

I hope that I'm not being inconsiderate, but since the first time I heard about Jani I had wondered about her animal friends.

Currently, what is the status of them? You mentioned in another response that 400 the Cat doesn't come around much anymore. Have you noticed that others have become more prevalent as she gets older? Are there more, or less now than there were?

Also; thank you so much for doing this AMA. I feel like you're really trying to help all of us understand something that would otherwise be very difficult to wrap our minds around.

I would say there are less now. The animals are largely gone. What she sees now are actual humans (although they seem friendly) and anthropomorphic numbers.

You mentioned that Jani was talking about the death of her hallucinations. How did that impact her? Were the animals essentially killed off in that episode?

A few have died. Not any of her close "friends." It was the 7 rats from the beginning of the book that died. She mentions them from time to time but doesn't seem that upset that they are dead, only that the medications could kill her "human" friends (hallucinations).

Has Jani ever tried mindfulness meditation?

Jani can't sit still or even hold still long enough to do any meditation. At least at this point. She has to move from the time she wakes up to the time she goes to sleep. Even in school she has to get up and move around and go outside and she has a one to one that goes with her.

Is she able to do a meditative motion activity, like jogging or biking (tandem?) I wonder if that could help focus her energy a little, especially as she gets older......

Not consistently, no.

My last question is what do you have against advocacy in hospitals etc?

Can you clarify what you mean by "advocacy in hospitals?"

"An advocate might help you access information you need, or go with you to meetings or interviews, in a supportive role. In some cases, you might want your advocate to be more active. An advocate might write letters on your behalf, or speak for you in situations where you don’t feel able to speak for yourself."

Thank you for clarifying. I don't inherently have any opposition to inpatient advocates. What does concern me is if the advocate is pushing for release or pushing the patient to deny all medication. Some (not all) are anti-psychiatry and I think it is important to remember that you would not tell someone with cancer or diabetes not to seek treatment. I think the role of the advocate should be to ensure the patient is getting the best inpatient and outpatient care. I feel some advocates, who come from an anti-psychiatry position, don't understand the serious of the disease of the people they represent. Helping someone to kill themselves by denying medication or treatment is not "advocating."

Psychiatic advocates in MN have been caught 'coaching' patients how to act normal, and push to avoid medication or treatment on behalf of adult patients in their care. Some of the patients were violent, or had serious mental illness requiring management.

Yes. In adult mental health care, much of advocacy has been invaded by anti-psychiatry groups. As I have said, I see this as akin to telling someone with cancer not to undergo chemo which could save their lives. Medication is far from perfect but it is the best option we currently have to treat severe mental illness. Why some people would encourage others to avoid something that could dramatically improve the quality of their lives is beyond me. It is selfishness, is what it is, pushing an agenda instead of the needs of the individual patient.

I agree. It is an extremely dangerous thing to have “advocates” who do not take mental illness seriously as most medical professionals do with physical illnesses. These are the same non-empathetic anti-psychiatry nut-jobs who somehow make it into the medical field, who think mental illness is nothing but a demon, a lack of discipline, an act for attention (etc.). For these people to try to convince patients with very real and sometimes very severe mental illnesses (myself included), the very same people who already have a hard time distinguishing their own reality and are already paranoid, and try to sway them into thinking that what they are experiencing is merely a projection of their own insecurities, lack of healthy daily routine, a projection of our society's mass delusion or new youth “entitlement culture”, or an invention of the Government collaborating with the drug companies in order make more money, is criminal. This is the biggest mind-f*ck that I have also innocently fallen victim to after watching an hour-long YouTube video of a man “proving” how mental illness does not exist.

Because I DO want to believe it. I DO want to get better. It’s easier (especially when we’re manic) to believe that “all we need to do is exercise and get a little sunshine, and we’ll feel better”. Because facing a mental illness that, at this point in society, the hope of finding a cure and leading a “normal” life, looks bleak. And it’s an enormous tragedy. So we are constantly on this roller coaster of ideals going from one extreme – “believing” the anti-psychiatry crooks – to another – coming back down from denial, having another psychotic, depressive or ‘what have you’ episode and having to re-realize and re-grieve having the illness all over again, which can cause more depression, more emotional outbursts, stress, and more need for real, honest-to-god help. At least what the Schofield family has helped do is a big start.

Michael and Susan, I thank you with all my heart for being brave enough to speak up on behalf of all of us. Michael, thank you for doing this AMA. I find comfort in reading your blog because it is so hard to find other people who are willing to share details of their experiences with this and it helps me know I’m not alone. Sometimes that is the biggest gift of all. If there is anything I can do personally, in my life to help raise awareness, please let me know.

Sometimes I feel like I’m sulking too much when I post about my problems on Facebook, but then I remember you guys and feel like I’m doing a small part just by sharing my struggle with my friends. It’s not much but I think if they knew someone who was being affected, that they would be less likely to misunderstand others with mental illness.

Beautifully said!

I've followed your story since the beginning! I'm curious about what is going on with your son, Bodhi? In the most recent special, he seemed to be going through something himself. Does he have a diagnosis? Is he feeling better?

His diagnosis remains autism with intermittent explosive disorder. He has been hospitalized twice because of self-injury (he will throw himself onto the floor on his back or whip his head into the wall while in what appears to be a panicked state). There is still a risk of that so I can't say he is doing better but he is not doing worse.

One more Question if Jani or Bodhi get sick like with a cold of fever does this affect them more or no

Hard to say. They don't show obvious signs of sickness when they are like being tired. Being sick does not seem to slow them down. Jani almost never gets sick.

Sorry I tried to speed read but there is a lot to go through so if this question has been already asked again I am sorry. But the version of the schizophrenia your child has is it the kind that is closely related to voices or is it the kinda schizophrenia that is related to fear? Like the kind that makes you think people are out to get you or that you think things are there that in fact aren't and causes a bunch of irrational thoughts/behavior?

The former. The latter is what used to be called "paranoid schizophrenia" although the DSM V dropped the "subtypes" in favor of a "spectrum" of symptoms. But Jani has never shown fear of her hallucinations. Other than getting a bit paranoid that Bodhi will damage her toys, she really doesn't think people are out to get her. Rather, she is very social and will talk to anyone.

Being paranoid that your brother will damage your toys, in my opinion, falls squarely in the range of "normal".

Could be. I am still learning what constitutes "normal" sibling relations.

Thanks for doing this AMA! I remember first learning about Jani's situation a few years ago in a psychology class I was taking, and it really intrigued me. I have a few questions for you:

Has Jani's attitude toward her little brother changed at all with age, or does she still have characters that tell her to hurt Bodhi? Is there any chance that these characters will go away, so she'll no longer want to hurt him?

Does she still show signs of high intellect like she did when she was a toddler? I find it fascinating that she knew the periodic table at the age of three!

Thanks for your time and answers :)

For the most part, yes, but "attitude" is the wrong word. "Attitude" to me implies choice and Jani had no choice. Today, for the most part, their relationship is normal older sister/younger brother. He can annoy her sometimes (and sometimes he is actually trying to annoy her to get her attention-I don't know if that is something autistic kids generally do) but none of her hallucinations are commanding her to hurt Bodhi. I wouldn't say she is driven to hurt him anymore. 400 the Cat rarely appears and the 7 rats, which were the characters that were "afraid" of Bodhi are gone.

As for her intellect, that is a more difficult question to answer. Honestly, no, she doesn't show the same desire to learn as she did before. But every time I mourn that I think of the fact that she is more of a "normal" child now with real friends, not some hyper-genius. Right now I just want to let her be a kid because she got robbed of that by the active psychosis. She still remembers some of what I taught her but I don't push it anymore. I just want her to have fun and be a kid and learn all the social stuff she missed.

(and sometimes he is actually trying to annoy her to get her attention-I don't know if that is something autistic kids generally do

I think that's something younger siblings generally do.

I think so too. My question was would an autistic child be interested enough in his environment to do this?

My boyfriend approached you, by email, at work about signing a copy of the book from your family to me. I don't know if you remember because it was last year but I just wanted to say thank you for sharing her story with me and for having your family sign it. It meant so much and believe me that book is never going out of my sight.

I remember him. He contacted me at CSUN. You are welcome.

First, I want to apologize for any ignorance on my part. I have read a blog or story of yours before, and I was interested in it then. But other than that story I have not followed any aspect of your journey or lives. I don't know much about schizophrenia, and have a hard time visualizing the...disease? Condition? Without having met anyone with schizophrenia.

Do you believe she could form a friendship with any child her age, or perhaps one at an age when they could understand what she has to deal with? Have you tried to form any friendships for her, any children of relatives or anything? Do you believe mental health advances are the only possibility to help her, have you searched for any other routes? I can't think of anything that doesn't sound like some new age modern crap but have you tried every possibility? And finally, do you ever feel angry, or negative at all, seeing all the condolences and pity and prayers people send your way?

I apologize again for any ignorance on my part, and hope I haven't offended you in any way. I truly wish the best for you and your family.

Lot of questions. Okay, Jani does have friendships with kids her age now. It took time. It took her coming out of her psychosis enough to be interested and it took a certain type of child who wouldn't find her occasional references to people and things that weren't there "weird." One of her struggles was to understand that while her hallucinations never have to go home, real humans do. But she has adapted well. We encourage relationships with other children all the time. That is the only reason we are fighting to stay in the apartment complex we currently live in. Jani has friends here, several other girls she plays with and enjoys playing with.

I haven't explored any non-scientific areas. There are other therapies like equine therapy, music therapy, play therapy, etc, but in order to function in those she still needs medication. I do believe medication has to be the cornerstone of all treatment. I don't believe in claims of "cures" of schizophrenia. They remind me of the "snake oil" salesmen of the 19th and early 20th Century. We have modern medicine and should not reject it simply because it doesn't work perfectly. It is like vaccines. I think it is easy for people in America to question vaccines now because they weren't alive when the diseases we vaccinate against today used to kill millions. In short, modern medicine has worked so well we now have the luxury of being able to question it.

I wouldn't say I feel angry about condolences. I think that is all people now how to respond with: "I'm so sorry." I would prefer they take action and I use my blog to try and push for that action.

I read an article about your daughter. Was a diagnosis of Asperger's Syndrome ever looked into? How did she end up on multiple 'harsh' medications?

Yes, it was. Every diagnosis was looked into. It takes at least six months of close observation of a continued psychotic state to make a diagnosis of schizophrenia and for Jani it had been years. Oddly enough, she actually does pick up on social cues, although that doesn't necessarily mean anything. Personally I think all of these illnesses from autism to schizophrenia are on a single spectrum. She is on the medications she is on because that is what she needs to be able to function and enjoy life and have friends and all those good things. The medications allow her to be herself, who she truly is, under the schizophrenia.

I have a few questions. I was diagnosed with Bipolar I in 2009 when I admitted myself to Austin State and have suspected that I have Asperger's since before that, and I know that those can be co-morbid. However, Psychiatrists have a hard time ruling it out because I have also been diagnosed with a Personality Disorder NOS, as well as Anxiety Disorder NOS, and my advanced knowledge about Asperger's (Psychology is one of my preoccupations) they say obfuscates a diagnosis of such at this time, requires further observation/tests, and getting tested where I live can be expensive. With my Bipolar I have always experienced psychosis only when I was at my highs and lows, but last year I started having less dramatic mood swings and longer periods of psychosis, even without a mood change, leading me to believe I now have Schizoaffective Disorder. I am reluctant to get back on medication because I am afraid of having bad side effects again, even though my psychosis is to the point where it's onset is sudden and it makes it dangerous to drive.

My questions are, on one of your Bipolar Nation broadcasts, when you and Susan interviewed a man with Asperger's, Susan mentioned that you missed the diagnosis of Asperger's by like two points, so I was wondering what similarities do you see between yourself and Bodhi and between you and Jani, as far as difficulties go? I read earlier that you have Bipolar also, so do you experience psychosis or any Asperger's symptoms, even though it's "not enough to make the diagnosis"? And how did they rule out that you did not have Asperger's, for you and Jani? And lastly, what is your MBTI personality type?

I haven't had the extensive testing you've had. I am actually not bipolar. That is Susan. I have been diagnosed with chronic depression. I have never experienced "manic" episodes. My psychiatrist has never administered any tests. It is just a feeling she has that I am probably a bit Asperger's. I don't like crowds and feel uncomfortable in large groups. I feel having to talk to people I just met. I prefer to be alone. Despite the claims to the contrary, I actually hate being in the spotlight and never enjoy being on tv, especially when it is live. Diagnosis is, I feel, less important that the impact the symptoms have on your life.

Does Jani still do cooking at the cooking place don't know the name of it I saw her going to it when the they showed Jani next chapter in 2012

That was arranged by the producers for that particular show, which I believe was the 2nd one, "Born Schizophrenic: Jani's Next Chapter." She does not still go there but she loves to cook. She cooks every day. The only thing we don't let her do is cut with sharp knives (we keep those all up-just in case, even though Jani has never shown any interest in knives). What she loves about cooking is that there is always something that needs to be done. Jani would cook all day if we could afford it. I joke that she should be cooking on an aircraft carrier for 5,000 people. She would love that.

"Hyperbolic" as you many be, I am having trouble understanding how or why you would write "[we both lost it] and hit her as hard as we could," when you "obviously" didn't do anything of the sort (your words). The two ideas are so very part about: hitting Jani as hard as you could, or "obviously" not doing that.

Just curious.

No. When you do something you feel guilty about, it tends to become worse in your head than it really was.

Have you heard Michael of a weight blanket before and do you think it might help Bodhi

I have heard of it. Sometimes it helps. Sometimes it doesn't. Just like with Jani, there is nothing with Bodhi that will consistently work.

Do you think that as Jani gets older she is able to deal wither her psychotic episodes more and is less violent when they occur?

That is already happening. She is rarely violent anymore and certainly nowhere near the level in the book, when she was 5 and 6 years old.

Thank you for bravely and openly sharing your story. My 10 year old son is currently inpatient - 5th admission after a 13 month stay in a residential facility. Voices were noticeable in preschool and first suicide attempt was in kindergarten. His working dx is Bipolar 1 w/ psychotic episodes but we don't focus on labels as much as syx management. His rages/violence ... well, from what I've read about your daughter, I don't need to tell you. Andrews voices are currently "torturing" him. He's on Lithium and Cloazaril (only been 2 months) and Seroquel. The Clozaril dose is still being adjusted so I'm holding out some hope but it sure does feel like we're watching Andrew slip away. Anywho, I'm feeling desperate. Andrew has been on, LITERALLY, every mood stabilizer and atypical antipsychotic on the market over the past 3-4 years and nothing is working or working for long. 1. how long did it take to see results from Clozaril with your daughter? 2. where do you and your wife find support (ie other parents)? 3. have you ever worked with NIMH?

We do have an private online support group that we started. You can message me for details. To see the full effects of the clozaril took about a year. But depending on the dose you should see some reduction in aggression, particularly since it is being supported by the Seroquel. What you are looking for is a slight improvement. Nothing is going to fix it all but clozaril seems to have its greatest effect after about a year.

Where we draw our strength from is helping other families like yours with our non-profit. We focus on the cause and on providing real services. That keeps us out of the dark despair at times.

Jani didn't qualify for the NIMH study because she had a brain issue revealed by MRI (ischemic thalamus). Any organic brain problem is an automatic disqualifier. Because of that we have never had the opportunity to work with NIMH but I believe in them.

Hello Michael, I think I read an article some time ago that you wrote about your children. From what I remember, and I may be wrong, Bodhi didn't have autistic symptoms at that time. To read this now and find out he does, what can I say, it got to me a little.

I'm amazed at all the work you and your wife have done for your kids. No questions, I'm just sending you good vibes.

We always hoped and wanted to believe Bodhi was "neurotypical" just so he would be spared what Jani went through. It was crushing to get the diagnosis with him, in some ways worse than when we got the diagnosis for Jani because you have to remember we'd spent years looking for answers for Jani. With Bodhi, it came on more suddenly.

What do you think about the gossip of abuse? I personally find it stupid.

It was a surprise at first but I have gotten used to it. What bothers me more is that abuse, or accusations thereof, can be used to minimize and deny serious mental illness in children. One does not cause the other. They are two different things and the most important thing is that as a society we stop denying the idea of serious mental illness in children.

There actually are serious mental illnesses in children caused by abuse, but schizophrenia and autism are not on that list. You probably know that, but I wanted to clarify that issue for anyone else that reads this.

Is Jani any better if she has constant visual and auditory stimulation such as TV, movies, music, or intellectual podcasts? It seems like the problem may be more apparent when her mind has time to wander inside instead of being focused externally. Although, like with asperger's, this may happen anyway, even with stimulation.

I really enjoyed reading this thread and I hope that things continue to improve for you and your family.

Yes, Jani still needs continuous stimulation but she is able to get it from TV, movies, and videos now when this was not the case when she was younger. They wouldn't hold her attention. She is doing very well, thanks.

Just have to say..I am so sorry about your apt situation. That seems so reasonable on your part to be willing to move to the other place above the garage with a 1 yr lease. Very reasonable on your part. I understand about the school district issue.

Like so much in our lives, we will just deal with whatever happens. But leaving the school district is the only thing we won't do. It would distabilize Jani too much.

Hi, Michael. I only became aware of Jani and your family a few weeks ago when I came across your Oprah show while looking up something on the Internet. Since that time my family and I have read January First and anything else we had time to read on the Internet about your family. I cannot put into words how much the incredible love and commitment you have for your children means to me, as well as your unceasing drive to fight for all mentally ill children.

I am very interested in finding out whether I qualify for your online support group. I am a 59 year old woman with a mild ASD, OCD, and a severe chronic pain condition (Complex Regional Pain Syndrome). My adult son has an ASD also, and my husband has ADD. We have been abandoned by our families of origin because of all of our disabilities (and I come from a Holocaust family, no less!) and we are struggling and sinking. Your and Susan's response to having disabled kids has rekindled my faith in (at least some) of humanity, and it would mean a lot to me and my family to be in touch with you and others like you. Who knows, maybe we could even help!

Please let me know if there is a way to find out whether I would be eligible to participate in your support group. Thank you so much.

You can email me at [email protected].

I'm super late to the party, but i'm currently 3/4ths of the way through your book and I love it. I read your article online about half a year ago and had to purchase the book; yet only recently have i had the time to start reading it. I admire your determination for saving Jani, especially after everything you've been put through. How is your and Susans' relationship going now now? And how is Bodhi doing? I wish you and your family the best of luck in the future, Jani is a very bright child.

Susan and I are still together and always will be. I don't think you can go through this experience and then consider leaving. I know some do but I feel closer to Susan than ever. Who else would ever understand me like she does? As for Bodhi, that is complicated. I would suggest reading my last two blogs at www.janifoundation.org/blog/

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Jani didn't space out or talk in third person and she wasn't aggressive until she was about 5. Basically, you need to trust your instincts. If you feel it is time to see a child psychiatrist, then it is time. Don't wait if you are concerned. It is hard to say if either child is experiencing schizophrenia but aggression, violence, or isolation is always cause for concern. You want to get the symptoms treated, any symptoms that seriously interfere with their quality of life. Diagnosis doesn't matter.

Has she ever been on Arirprazole? Why or why not? Also, why does she not show negative symptoms of schizophrenia? And schizophrenic hallucinations are usually auditory but I didn't notice any of that; I just watched the TLC segment for the first time, and haven't followed or even heard of Jani's story before so you may have already explained all this, in which case I apologize for the repetition, it's just that I'm an undergrad psych major and this is very interesting to me.

Along with everyone else in this blog, I am so genuinely sorry while simultaneously impressed.

Arirprazole, known as Abilify, "activated" Jani, making her more impulsive and dangerous. It was quickly discontinued. As for not showing negative symptoms, she does. She will have the "flat affect" and inappropriate or lack of emotional response. She is slowly gaining a full range of emotions but it has taken time. But she is very social and loves talking to people, which is a huge strength. In her case, the positive symptoms were worse than the negative symptoms because she is so social. As for hallucinations, Jani's seem to be different from most in the sense that they do not scare her. They involve all her senses but do not scare her. They are just the background noise of her life.

Abilify? Yes, it was tried many years ago and it did not work. It would her up, almost like a stimulant.

Hallucinations can be auditory, visual, olfactory, or touch. Don't get hung up on thinking they are exclusively one or the others.

Jani does have the negative symptoms. Negative symptoms are what neurotypical people that those with schizophrenia struggle with. For example, Jani struggles with a full range of emotions. She is still learning.

I know this was originally posted long ago, but saw Michael made a response recently so I thought I would ask something. Thanks again for taking time to answer so many questions. This was one of the best AMAs I've read.

What was the decision making process like in having a second child?

Long. I didn't want to have another child because I wanted to focus my energies on Jani. But Jani by this age desperately wanted someone who "got my imagination" as she used to say. We kept trying to find peers for her and every time it would end in failure. She seemed to be losing her enjoyment of the things she had loved to that point and I was struggling to engage her in new interests. Ultimately, I hoped that a sibling might rekindle the spark of life by giving her someone she could teach and guide like I had done for her. That's the short version.

This might sound like a stupid question but does Jani or Bodhi go see a dentist and if they do does anything happen bad while they are there like do like get angry or have a fit it they have to go to the dentist

Yes, they see the dentist. No, they do not like it. It is a struggle while they are there.

How do you and your wife ever have time for intimacy?

At night, after the kids have gone to bed, or sometimes in the morning while they are in school.

Oh. Because I saw you on Oprah via YouTube, and I thought: How can they have a husband/wife relationship living in two apartments like that. So at night you leave one of the kids unattended for a while? And, aren't you at work in the morning?

Oh, you mean during that time. No, during that time there wasn't really much of a chance for intimacy. I thought you were asking about now. We've been back living in one apartment since October 2011. For most of the last several years I've been teaching solely online.

Do you still hit her as you said you did in your blog entries?

I never did. Like most parents of my generation, I was determined never to spank my child or use corporal punishment so the one time I lost my cool after being hit and kicked all day by her and spanked her it caused an incredible amount of guilt in me. If I had really "hit her as hard as I could" there would be no way to hide it. It's not like Jani's been hidden away from society. There are people and mandated reporters everywhere. That line was me expressing my guilt and my frustration that so many people back then thought that was all Jani needed was a good spanking. I wrote what I felt, not what I actually did. Most people can tell the difference.

I've been following your story for years. How is Jani doing recently? I haven't seen many updates this year. She seems like such a bright young soul and I commend you for doing all you can for her. You are a great father, even during the difficult days.

Jani is doing very well. I was just over on Goodreads and I saw some comment that Jani was "11 or 13 now and not any better." The anti-medication/anti-psychiatry people desperately want to believe that but it isn't true. She is doing very well and has come SO far from where she was in the book. For the most part, she is non-aggressive and fairly functional. She is pretty much a normal kid these days. Today was her 11th birthday.

No questions for you but I just wanted to tell you that ever since I read about Jani and your incredible struggle I've had nothing but admiration for the dedication you and your wife have given to your entire family. You've done so much to further understanding and awareness of childhood mental illness, and I can't imagine how exhausting it is.

Thank you very much. I appreciate that.

Is Jani still doing therapeutic riding?

Yes. Every week.

I am so sorry I missed this. I've been following Jani and her story since I saw her on Oprah. I would do anything to meet her and help take care of her or just play. My older brother was diagnosed with psycho schizophrenia when I was ten (1995) so I know the ropes. I get scared of him sometimes when he doesn't remember making death threats, but only because he's huge. Jani is small and I love seeing her happy. I am also living in So Cal too. And your book was brilliant! Maybe I can send her some toys? I'm broke but I really want to get her somethings

Jani is doing fine. Thank you, though.

Are you related to Jeremy?

I have no relation named Jeremy.