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Baby, It's a Violent World

I always feel like I lose myself a little bit when Jani goes into the hospital. It is like life stops, which is the opposite of how I would feel about this situation if I wasn’t living it. I would think that the “break” must be welcome, but it isn’t. I feel incomplete at best, lost at worst. I suppose that is one of the reasons why I don’t send Jani to residential care. When Jani is gone, it doesn’t feel like life can begin again. Rather, it feels like it has stopped.

 

What this means is that I have adapted to life with Jani to the point that it is my normal functioning. Only when Jani is growing do I feel like I am growing. Every time she goes back to UCLA, the staff always tell us to “get some rest” and say things like, “Now you and Susan can actually sleep together” in all the ways that sentence can be understood.

 

But I never do. I don’t spend the nights with Susan, sleeping in the same bed with her. We are no more a unified family when Jani is gone than when she is present.

 

I spend a lot of time in her apartment. I use the excuse that I need to write, which is partially true. I have a book deadline now. But that isn’t the whole reason. I just don’t feel comfortable. I feel like my skin is crawling. It is the same feeling that soldiers have described after coming home from a tour of duty in combat, or what bands describe a week home after being on the road for a year or more. They don’t know what to do with themselves.

 

Humans are remarkably resilient creatures and we very quickly adapt psychologically to long-term stressors. This is flies in the face of the increasingly outdated view that we can become “damaged” by psychological trauma. It isn’t that psychological trauma doesn’t exist. It most certainly does. Rather, it means that what therapists have for decades seen as “damage” is actually functioning defense mechanisms for dealing with that psychological trauma. These defense mechanisms only become “damaging” once we are no longer in the environment that required their development in the first place. Post-Traumatic Stress Disorder occurs because the defense mechanisms needed to survive the trauma are no longer needed but still functioning. When in combat, shutting off your emotions is a good thing. It is the only way to function in an environment where you are under threat all the time. Unfortunately, it becomes a problem when you return from combat and you are still wired to suppress your emotions.

 

Humans are very tough creatures. Psychological trauma doesn’t break us, particularly if it is slowly loaded on over a period of time. We adapt. If we were as fragile as the social constructionists think, we would have been extinct a long time ago.

 

It isn’t that I don’t love Susan or Bodhi. Susan is my rock, as shaky as she can be sometimes. I used to feel anger with her because she wasn’t as “strong” emotionally as I was, that I needed to be her rock. But that probably saved my life because I had to keep her going, and that distracted me from my own emotions, which were far too painful to face.

 

Without Susan, I fall apart. I need her. I need to keep her going because that is only way I can function. Everything I have ever felt since all this began lies just under the surface and as long as I keep working for Jani, or Susan, or Bodhi, or your mentally ill children, then I don’t feel it.

 

I suppose I am too much of a coward to feel it.

 

So I am in limbo right now. Not purgatory, just limbo. Waiting until she comes home and the only life I can remember now restarts.

 

When you are the caretaker of someone who is mentally ill, particularly when it is your child, you have to get a little crazy too. You have to get a little crazy to relate. You have to get a little crazy to survive what would kill most other people.

 

By the way, don’t get offended by my use of the word “crazy.” Mentally ill adults and children are not crazy. They are mentally ill. Therefore, they cannot hide who they really are. What you see is what you get with them, unlike the rest of us who are “crazy” enough to believe that we are really in control. I use the term “crazy” to describe visually functioning “neuro-typical” people, people like you and me. Our “craziness” is hidden under an elaborate system of defense mechanisms that allow us to conceal what we are feeling.

 

The mentally ill are the only truly honest people amongst us. They can’t hide. We can.

 

But maybe that’s just another one of my defense mechanisms.

 

A good friend of mine who was featured at “The Gathering” in Jani’s Discovery Health Special “Born Schizophrenic” (which airs again this Sunday 6/20 on Discovery Health) has a daughter with a diagnosis of schizophrenia. She (the mother) reached out to me after the very first LA Times story on Jani ran. Every time Jani has gotten some media attention, more and more parents of mentally ill children have contacted me, and I have responded to everyone, although I still haven’t responded to all the parents who emailed me after “Born Schizophrenic” first aired back on May 4th, which I feel guilty about. My email is really backed up and I apologize. Even ignoring all the emails from people suggesting various “miracle cures” (which I do) and the emails offering sympathy and support (which I read but cannot reply to because of sheer volume), it still takes me forever just to get through all the emails from other parents sharing their stories and respond, offering what meager support I can at this point, which is really only the private online support group I set up for parents of mentally ill children, which can be found on my “Resources” page. A few days ago I got an email from a woman with a ten year old son suffering from psychosis. She has been trying to get him into an acute inpatient setting for evaluation, but can’t. She contacted the University of Illinois at Chicago First Psychotic Episode Program, but they don’t take kids under the age of 12 (I love these arbitrary age limits, as if psychosis respects the institution of childhood and won’t appear until adolescence). The intake coordinator there suggested this mother contact “Jani’s Dad.” She had apparently heard about me through internet groups and suggested she look up my blog.

 

Me.

 

This more than anything I have been through showed me how broken or non-existent care is for mentally ill children in America. The intake coordinator for a major teaching university adolescent psych unit has nothing more to offer this woman than to send her to me.

 

So what has happened in the nine months since Jani’s episode first aired on Oprah? I am getting asked that a lot since the repeat just aired again. People want to know if anything has changed for us and for Jani, if somebody has stepped forward to “save” us. It shows how much faith we put in television, that surely someone, somewhere, can “fix” this. All it takes is to get the story to enough people.

 

Nope.

 

Thanks to the LA Times, Oprah, 20/20, and Discovery Health, Jani’s story has gone all over the world. I have gotten emails from Japan, the Philippines, India, the United Kingdom, Germany, Ireland, France, and Finland (in fact, there is a Finnish Facebook page dedicated to Jani, as well as another in South Africa). I have gotten emails from the foot of Mount Kilimanjaro in Tanzania. Jani is a global phenomenon. I once received an email from a guru in India telling me that Jani was the reincarnation of the Hindu god Ganesh (because Ganesh in Hindu mythology did battle with rats, and rats are some of Jani’s hallucinations).

 

Millions of people all over the world know about Jani.

 

What has happened, to answer your question, is that not much has changed for Jani. She is still who she was, and is only vaguely aware that she has been on TV. She knows she has but it isn’t that important to her.

 

Oprah, for all of her wonderful qualities, is no match for Calalini. Apparently, the Oprah Winfrey Show doesn’t air in Calalini.

 

Nearly a year after we shot that episode (in August of 2009), not much has changed for Jani. We never went on Oprah looking for “help.” We went on Oprah to educate. So what is happened is that instead of people coming forward to help us, hundreds of families with mentally ill children have come to us looking for help.

 

And now even establish hospital psych programs are sending parents of mentally ill kids to us. To a father writing a blog.

 

That is a bit overwhelming. It’s not that I can’t handle it. We always wanted to use to publicity of Jani’s story to bring about change. This was never just about us. Even before Oprah, even before the LA Times, we knew there were other children suffering from mental illness with families who had no help, no support, no services. That’s why I don’t hang on every email I get telling me that what Jani is not schizophrenia but demonic possession. I’ve gotten thousands of those. It amazes me how many people still believe in what is essentially a Dark Age concept. It is why I don’t respond to emails suggesting various kinds of spiritual healing, be they shamans (New Age) or Christian faith healers. Everybody wants to “cure” Jani, I suppose so they can claim credit. The cynic in me says wouldn’t it be great for them if the girl that went on Oprah was cured of her demons in Jesus’s name by a faith healer. It is their ticket to the big time, even though I have no doubt they really believe what they say.

 

But Jani is not alone. What about the hundred mentally ill kids in my parent’s support group? What about the kids you see everyday melt down in public? Hell, what about the homeless man raving to himself on a street corner?

 

Why aren’t you trying to save them with whatever you believe will do the trick?

 

Even should Jani miraculously get better, you really think I could forget all the other parents I have met, all the other parents who have written to me, and just move on with my life thanking Jesus for saving MY child?

 

Let me tell you a little something about Jesus. I believe in Jesus. I do. I always have. His message was the only part of the Bible that made sense (I have read the Bible cover to cover three times). Everything else in the Bible, constructed by the Romans at the Council of Nicaea in 325AD, is a combination of myth and history designed to reinforce the authority of the Catholic Church. You notice that there are only four Gospels of Christ in the Bible, the Gospels of Matthew, Mark, Luke, and John. There were Twelve Apostles (or eleven if you believe the betrayal of Christ by Juda-a name also meaning “Jews”). So are we to believe that the other seven Apostles of Christ didn’t write? Only Matthew, Mark, Luke, and John had time to sit down and crank out a Gospel?

 

The reason that only the Gospels according to Matthew, Mark, Luke, and John made it into the New Testament is because all four focus primarily on the death and “resurrection” of Jesus. At a time with life in Europe was pretty shitty, it helped the Church consolidate power by advertising the concept of being “reborn” into the Afterlife. It helped to maintain social order, because the peasants were less likely to rebel if they were promised streets of gold in the Afterlife. Hell, you are only going to live 35 years anyway. Why not put up with social inequalities in Medieval Europe with a prize like that in the end?

But if we actually look at what the Gospels describe of Jesus’s life, it is easy to get sidetracked by the miracles worked by the Son of God. But what happened to these people that Jesus drove demons out of?

 

They stayed with him. Or rather, he stayed with them. Jesus spent his life in the service of the downtrodden of society. He spent his life fighting for them, which is eventually what got him killed. The Jewish Priests preyed on the weak and ill, taking what little money they had, which royally pissed Jesus off. He challenged their exploitation of the poor and they in turn went to Pontius Pilate. The last thing Pilate wanted was to lose the support of the priests that helped maintain Roman control. So he, very reluctantly, signed Jesus’s death warrant.

 

The Romans historically maintained control by incorporating elements of the local religions into their own. Constantine called the Council of Nicaea to consolidate Roman control over a religion that growing faster than the Romans could contain it.  Prior to the Council of Nicaea, there were multiple Christian sects and not all of them believed Jesus was divine. The concept of a human as divine is a Roman idea. The Roman Emperors were considered divine, starting with Octavian (later Augustus). So this concept of divinity was adopted by the Catholic Church as a means to maintain continuity between the previously pagan Roman Emperors and the new Christian Rome.

 

Those that didn’t agree were killed, allowing Constantine to consolidate his control over Christianity.

 

My point in all this is that if Jesus were alive today, he would be out on the streets, working with the mentally ill who scream obscenities at no one we can see. He might very well be a psychiatrist at Bellvue, working to heal children and adults afflicted with mental illness.

 

Jesus would not treat one mentally ill child, say Jani for example, and leave the others to their fate.

 

So if you believe in Jesus, you have to do what Jesus would do and get down in the trenches and work your ass off, even if it means that you get crucified (in the metaphorical sense).

 

To pray for the deliverance of one from “evil” is not enough. You have to deliver all that suffer, no matter what the cost.

 

This was never about Jani. Jani is figurehead, because she is a child that so many seem to be able to identify with and connect with. That is her power, her gift, which we had nothing to do with. But all gifts must be used in the service of a greater good because otherwise we are only advancing ourselves and not the human race in general. Which is a problem for all of you because these kids like Jani, Becca, Brenna, Ailish, Mari, Logan, and many, many others are going to have to live in your world. It is like cancer. You can’t kill just part of the tumor. You have to get it all. These kids are in your world. They live amongst you. I guarantee you that somewhere in your neighborhood or at your child’s school, there is at least one mentally ill child. They are torn between our world and another, but their physical form is here, even if their mind isn’t always. You are more surrounded than you know. They may not look like Jani. They may not be cute and blonde and energetic. But they are there and you ignore them at your own peril, and not just because they might be violent. It is mostly just us caregivers, parents and teachers, who get the violence. But for every mentally ill child that ends up on the streets, or in jail, or dead, you don’t know what we lose. Because these children have incredible gifts to offer to world. They are brilliant and creative and, when not psychotic, kind and compassionate. One of them could cure cancer. One of them could figure out how to stop global warming. One of them could figure out how to travel to the stars.

 

Creativity seems to be a constant in most mentally ill children. Although researchers still don’t know the connection between creativity and schizophrenia, the two appear together far too often to be mere coincidence. Creativity is necessary to the survival of the human species. It has been ever since 50,000 years ago, when the human population was done to approximately 5,000 people, and the grasslands in North Africa were turning to deserts because the Ice Age had changed the global weather patterns, a human figured out that after the rains finally came, they should fill gourds with water and bury them for later when the droughts returned. This simple idea saved the human race, ensuring our survival through the lean years of drought and allowing long distance migration out of Africa.

 

Schizophrenia survives in the human species and is found in all human cultures (although to different levels) only because it must be attached to something that can increase our chances for survival. If it was only negative, it would have been wiped out. Throughout history, there have always been those who fought to keep the mentally ill alive because they saw value in those who suffered from it.

 

So the goal is not to “cure” schizophrenia or any other mental illness. There is no cure, at least not yet, and I don’t know that we will ever understand the complexities of the human mind enough to cure it.  The goal, my goal, is not to cure Jani but to provide her with the best quality of life her illness will allow. I want her to be happy. I want her to be able to do things she wants to do, like become a vet. And all of that can only happen if I can keep her alive.

 

And if Jani makes it but all the other mentally ill kids I have met and still will meet die, or spend their life in an institution, or suffer, then my victory for Jani will be an empty one, because I could have done something to help but didn’t.

 

I acknowledge your good intentions. I don’t think anyone who writes to me offering one or another untested “cure” is a bad person. But I’m not looking for a cure. I am looking for help for Jani, in terms of more opportunities to work with and help take care of animals (because that is her best therapy). But after a year, we’ve pretty much figured out what we need to do to keep Jani going. We are not blindly reaching in the dark anymore.

 

What I am looking for is not your cures or your suggestions but your time and effort. And not just for Jani, but for other children with mental illness. If you know a family who has a mentally ill or autistic child, offer to help, without judgment. Just tell them you want to help in any way to you can. Maybe you will go get groceries or run errands, because we parents of mentally ill and autistic kids can’t do that. Taking care of our children is a full time job. Maybe you will take the family to a zoo or aquarium. Maybe you will talk to the child and play with them, keeping them engaged for an hour so the parents can take a break.

 

Don’t judge. Don’t try to figure it out. You can’t figure it out. There is no quick solution. There is only the hard work of trying to make a better life for mentally ill and autistic children.

 

Oh, I forgot the whole reason why I mentioned my friend whose daughter joined us at “The Gathering” on the Discovery Health Show. Her husband has moved out.

 

I am hearing this a lot lately. I know a lot of marriages that have broken under the strain of mental illness. I don’t judge it. My marriage nearly broke under the strain of it, until we embraced this life, embraced Jani and everything that comes with her, and totally altered our lives to keep her as part of our family.

 

He is not biological father of the girl, although he and the girl’s mother did have a child together, a child who is now two. The older girl with schizophrenia thinks it is her fault that her step-father moved out.

 

I have no idea if he reads my blogs, but if he does, I want him to know I don’t hate him. I don’t judge him. We all want to run away sometimes. It is human. You have undertaken the hardest job on earth, and that is to be a parent to special needs child.

 

But I also know that in the end, you can’t escape. In the end, it will drag you back. The best piece of advice I can give to parents of mentally ill children is that this is your life now, and it will always be your life. The more you fight to keep the life you had, the harder it will get, and the more painful this will be. Accept it. Embrace it. It won’t kill you. I promise you that. You can and will survive this. You don’t have to do it alone. There are one hundred other families (that I know of) going through exactly the same thing.

 

Jani won’t give up, and so I won’t give up. And if I don’t give up, maybe I can help you not give up. Maybe I can carry you through the times you need me to carry you and maybe you will eventually do the same for me.

 

We can do this. We can survive. We can give our children a life of happiness. We can find moments of happiness. This isn’t all hell. That is what I have learned in the past year. This isn’t all hell. This can be the greatest thing you will ever do with your life.

 

Just don’t give up.

 

To finish up, let me update you on Jani. Jani is still at UCLA, which should have been clear from the beginning of this blog. That is why I am still here writing it at 2am. The goal of this hospitalization was to see if there was anything that would work better than Thorazine, the dosing of which was creeping up again because Jani was getting impulsive (read my last blog). The doctors wanted to try Saphris again. Saphris is a relatively new anti-psychotic that only became available last August. We had tried it before on an outpatient basis but it had wound Jani up like a stimulant, making her more impulsive and more emotionally unstable. We tried it again, inpatient this time. At first, it seemed to be working. Jani was able to go to school in the hospital for an hour and 45 minutes, something she has never been able to do (we struggle to get through her hour of “home hospital education” that we do at her school after the other kids have gone home). But then Jani started getting “time-outs” all the time, being defiant with the staff, writing all over her walls, tearing up her art projects, things that we haven’t seen since she started the Clozapine last July. She became more aggressive. Usually she loves the hospital and is very compliant with the staff (as she usually is at home as well unless she is having a psychotic episode). All of her toys were locked away because she was throwing them.

 

When we would visit, she would have a hard time focusing. She would bring me a book and want me to read, but be unable to pay attention after the first page. She also wasn’t responding to my wacky sense of humor, which she shares and is a tell-tale sign that she is not herself.

 

Today, she bent her leg below the knee up until it rested against her thigh. I commented that it looked painful.

 

“It does hurt,” she said.

 

“Then why do it?” I asked, trying gently to push her leg back down.

 

“I want to hurt myself,” she answered matter-of-factly.

 

I kept trying to push her leg down. I needed to distract her but I am having a harder time distracting her now, which made me feel very impotent. I hate it when I can’t reach her and bring her back from the psychosis.

 

Now they are titrating down on the Saphris and trying Tenex. The hope of the doctors had been that they could treat the impulsiveness that was making her run into traffic and lay down in the parking lot with an anti-psychotic. But in the last few days Jani has been asking the staff for Thorazine, telling them she needs it (an improvement from last year is that she will try to tell us when she feels she needs medication). The central question was could we treat the underlying psychosis better than we have been…

 

…or….

 

…if we can’t, then we will have to use the sedative effects of the medications to slow her down so she cannot act impulsively upon commands from her hallucinations.

 

The Saphris was an attempt to try the former. It didn’t work, leaving us no choice but to go with the latter. It is a horrible choice to make. Jani did seem more present on the Saphris, but more impulsive. If I have to make a choice between treating her hallucinations sufficiently so she can function in school and sedating her just enough to keep her from impulsively hurting herself, I will choose the latter.

 

I chose safety over happiness and I will live with that, because it is hard to be happy if you are dead, and Jani can outrun me now. I can’t prevent her from darting into traffic because one of her hallucinations is playing the street. I can’t prevent her from abruptly trying to climb onto the roof or jumping off the balcony. She is getting too fast for me and I am getting too old.

 

So I will sedate her so that she can’t. She’s not a zombie. Jani has never been a zombie, even on 300 mg of Thorazine. She runs around happily and participates in activities on medication doses that would put most of us into a coma.

 

Judge me. I don’t care. I would rather have my daughter be a little extra tired and alive than so wound up that she runs out and goes under a car.

 

I would rather her be alive. Call me selfish, but it is my decision and that is the decision I will make. Hopefully, it won’t always be a choice between those two extremes, but right now it is. I need to keep her alive. I need to get her to adulthood. I am doing this through means other than medication (like animal therapy) but I still need the meds to increase her odds of still being around when she is fourteen.

 

That is my choice and I am prepared to live with it.

 

I can’t have her hurting herself.

 

I can’t have her screaming and hitting at Bodhi simply because he is trying to play with her.

 

I wrote in old blog that this was like Sophie’s Choice: it felt like helping one child (Jani) hurt the other child (Bodhi). I wrote at the time that I refused to make that choice, even though many have pushed me to make it.

 

But I won’t. I can’t. I cannot choose one child over another, even though I am not blind to fact that Bodhi shows faster development when Jani is gone, or that he chews on his wrists after Jani yells at him. I am not blind to the fact that he is getting more scared of her.

 

But what would you do?

 

It’s a rhetorical question.

 

I don’t want to hear your answer.

 

I will not give up on either one and I pray that Bodhi will understand.

 

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49 comments on “Baby, It's a Violent World

  1. Hugs and Understanding
    From experience I know that there is nothing that can make things better for you but to have Jani at home in your arms. I am very sorry that she is in the hospital again.

    Have you heard of a book called “Broken Minds?” It is about a man (a pastor) who has major depression. He was judged by the church and he speaks for Christians Afflicted With Mental Illness. He has actually formed a support group. Do you and your wife go to church? I understand that it would be hard because many people would assume that Jani needed an exorcism. I too was told that I needed an exorcism and they actually performed one. I know that many people at the church do not understand but I also know, that with out God and along with my parents, there’s no way I would be here. I remember praying the last day I was in the state hospital, on my knees, to God to please let the judge let me go. It is a miracle alone that he did and I have no doubt that God played a role.

    The author of “Broken Minds” is Steve Bloem from Michigan. His website is http://www.heartfeltcounselingministries.com

    Remember this verse:
    Philipians 4:13
    “I can do all things through Christ who strengthens me.”
    It always got me through the worst of times.

    also the quote by Henry David Thoreau
    “It is in the darkest of skies that the stars shine brightest”
    Got me through a time or two.

    I’m praying for you guys.

    Stephanie

    Note from Michael: Thanks, Stephanie. It is great to hear that there is such an organization and that there are Christians who do understand that mental illness is a biological illness and not demonic possession.

  2. Jani- hospitalization
    Michael, from your posting today it sounds like Jani may have been hospitalized again. Thinking of you…

  3. Last Reply
    I was trying to recall exactly what I said in the last reply to this blog. And I was afraid that I may have wrote my words confusingly and made it sound like Jani needs an exorcism but that’s not what I was trying to say. What I was trying to say was that people many times make assumption and assume that someone with a mental illness needs deliverance. Me being one who recieved a “deliverance prayer.” I am infuriated every time I think about that 6 hour long prayer. What I was trying to say was that people like Steve Bloem (the author of Broken Minds) might be able to help because he is Christian and looks at mental illness completely different than most Christians do. I’m sorry if it came off wrongly or in a cross way. I tend to have a lot of thoughts come to me at once and it’s hard to explain myself sometimes.

    I will continue to pray for your family, for restoration and healing.

    :o)

    Stephanie

    Note from Michael: Nope, I understood completely what you were trying to say. Like I said, I think it is wonderful that there are Christians who see mental illness as a biological illness and who understand that God works. I believe that science is a miracle and that it is a miracle of God.

  4. You said when Jani wanted to hurt herself, she was present – do you mean she was not psychotic?

    If so… I know this is going to sound odd, but bare with me on this.

    Trying to stop her from doing it probably isn’t going to help. Not for very long, anyway. As she gets older, she’ll get more clever, and she’ll find ways.

    Hurting oneself is a coping mechanism. It’s a BAD one, but all the same, it’s what we do when we have run out of ideas.

    And a lot of the time, therapists try to make us stop hurting ourselves. That is the wrong approach.

    They should be offering us better coping mechanisms, or helping us figure out why we do it. Because once we know why, and once we have positive ways of coping, the desire to self-injure fades away.

    I struggled with “quitting” self injury for years. And it wasn’t until I figure out why I did it, and replaced it with something better, that I successfully quit. And I didn’t even have to quit – I just sort of lost the desire to do it.

    This may not be part of her psychosis. This may be part of the pain she feels of living with her psychosis. If she is present when she wants to hurt herself, she may be able to articulate a reason to you, or her therapist.

    Love,
    Cassie

    Note from Michael: Thanks, Cassie. That makes a lot of sense. I will remember that.

  5. January is a blessing
    The real problem here is trying to cure or fix something/someone that is NOT broken.

    Your daughter is not sick or mentally ill.

    She is simply so intelligent and sensitive, that January is able to perceive another reality: Calalini.

    January is not bound to the restrictions of our reality, as most of us are, but instead she is able to interact with beings from another existence: 100 Degrees and 24 Hours; 200-the-Rat; Magical 61-the-Cat; and 400.

    What we perceive to be “bad behavior” may in fact be normal to the residents of Calalini; the biting, hitting, yelling, etc.

    The sad truth is that most doctors or psychiatrists will immediately diagnose children like January as “schizophrenic” or mentally ill, never once taking into consideration that January may in fact be seeing and experiencing an alternate reality that we are unable to perceive.

    It is because we are not able to perceive these things, that we deem January to be “mentally ill”. If we took this same approach and logic and used it against the ideas of men like Einstein; men who tell us of strange things like black holes or alternate realities or dimensions, we accept them as geniuses and do not question their state of mind.

    The point is that it seems possible that we may not truly understand everything that is going on with January, so perhaps she is not as ill as people say, and to me she seems very fascinating.

    Just accept her, which you seem to have done already, and understand that there is nothing wrong with her, and that January will learn over time how to handle her ability to perceive other realities.

    I wish I had a daughter like her.

    Thanks and I wish you all the best.

    Note from Michael: I don’t deny she is a genius and perhaps she can see an alternate reality, but it doesn’t matter much if it kills her, does it?

  6. hello..
    since you said jani like doing creative things(i do too) is it possible for her to go to a school where most things are hands on.. theres a school near where i live which does just that.. the children spend most of their time outdoors learning maths etc.. by building things etc..
    i hope the new medication works well for jani. my psychiatrist said you just have to keep trying till you find one that works.

    Note from Michael: Jane, that is exactly the kind of school I want to create via The Jani Foundation. I don’t think cramming any kids into desks for six hours is a great idea. We need to be learning out in the world.

  7. Just offering some support
    I saw the episode about Jani on Oprah last night, I had never seen it before. I went online to search for your blog because I wanted to read your thoughts and see how Jani is doing. I am sorry to hear she is back at UCLA.

    I am a new mother of twins and I cannot imagine the amount of strength you and your wife and Bodhi have. Dealing with mental illness especially mental illness of a child is a full time exhausting job. I admire what you and your wife are doing and have done for Jani. It has taken over your “life” well the life you had prior to this I mean and I know what you mean (somewhat) about just accepting it and moving on. You’re right, to sit and dwell on how different things are and how you wish it was not this way is counterproductive and doesn’t help anything. I did want to ask if you have any help, friends, relatives anyone? I know it must be hard for them to understand and be able to help and maybe you’re scared to even ask for help for fear people, even family, won’t understand and be able to help. I just cannot imagine taking all this on just you and your wife. I don’t mean to suggest you do something else or deal with this in another way, but for your mental health it would might help you guys to have some help at home. I dunno…. I am not judging and am just thinking as I type. I know how it feels to think no one else can do it like you can and thats why you have not wanted to put her in residential. I get it. Also, does Jani get to see the little girl she was playing with on Oprah? That seemed like a really positive experience for both girls.

    I prayed for your family last night and I do hope you guys stay strong, fight the good fight and continue to keep Jani as happy as she can be. Bless your family.
    Sincerely,
    Rachel

    Note from Michael: We have family, but they are not in the area. We do have a few friends but the best help comes from other parents of mentally ill children we know. Yes, Jani does get to see Becca on occasion, hopefully next at Jani’s 8th birthday party.

  8. Stick to what you know
    I appreciate that everyone is entitled to their opinion. But expressing your opinion as fact is a mistake, in MY opinion.

    I am a Christian. I believe in the Bible as the Word of God. Your historical discourse on the history of the writings, including that little sideline into the Catholic Church, was well-written and interesting – but you can’t state with any certainty that your version is true. Any more than someone else can write to you with their “version” of what is causing Jani’s symptoms.

    I have followed your blog faithfully for six months because I was moved by your family’s story and your struggle. I admired your devotion to your daughter. What I don’t admire is your current lapse into cynicism and what you have chosen to say about Christianity. You’re obviously angry and offended by what some well-meaning but perhaps uneducated people have offered you as advice. Although I’ll say this – if I was out of ideas to help MY child, I might just line up to try something different, no matter how strange it might seem. And I would be much more willing than you seem to be to put my faith in Jesus, who, you forgot to mention, is the Son of God. But that’s another blog.

    I am no longer going to be reading your blog, watching you on television. or sharing your story with others as I had been doing. Your blog has become something different than it was in the beginning.

    You might want to consider that your “rants” could possibly use some editing at times. You don’t want to alienate the very people out here who might be able to offer emotional, financial and other types of support to you and other families in your situation with a stream of consciousness blog of this type. Words are powerful, whether they are biblical or secular. That is why the bible tells us that the power of life and death is in the tongue.

    This is just MY opinion, of course. You are free to discount me as you have many others who write to you. I will continue to pray for Jani and your family.

  9. Why they come to you
    Well, psychiatrists all over refer families to your blog because they know you’re fighting for your daughter. Maybe they are hoping you can help them (doctors too in some way)…..in the long run, psychiatrists will have it easier too when the Jani Foundation is up and running and fundraising and this that and the other thing in order to get your voices heard and effect good change for your loved ones. That’s what I think anyway.

    Bodhi probably chews on his wrists when yelled at because the yelling hurts his ears. You might want to think about earplugs for him. And this might sound strange but knee pads, shoulder pads, a helmet……so maybe he can interact with Jani more but still be protected from injury…

    I think Eri’s idea of creating a picture book for Jani of the citizens of Calalini is a great idea, and one that perhaps even Bodhi could benefit from……he must be incredibly confused when he spills water and Jani freaks out….he doesn’t realise that such a little thing can cause such a big reaction…..and more importantly he doesn’t know WHY.

    I hope it gets easier to explain things to him as he gets older and has more capacity to understand such complex things. He might mature even faster because of events in his life right now.

  10. words of encouragement
    Wow. I can’t imagine how hard this must be for you and your family. You are an amazing pillar of strength. I hav 4 children ages 15, 10, 4 and 3. My boys (15 and 3) have both been diagnosed ADHD and the youngest also has ODD. It is so difficult to spread myself between the 4 kids and since my husband owns a restaurant, it falls to me alone. I hav family who tries to help, but my youngest is so hard. No one can handle him longer than a few hours. Even with their help, I feel so alone. Like I am the only one who can mange Trevor ( my youngest) and I am not a patient person but I am for him. I can bring him down when he loses control, when he is angry and when he is mean.

    My point is, all of us struggle to do the best by our children. We try to giv them equal treatment, but it’s just not possible. My boys require much more attention and when I go to bed at night, I worry I didn’t giv enough love and attention equally to all 4. I worry all the time. My worries are so much smaller than yours, but the feelings of guilt and inadequacy are similar.

    Bodhi may be scared of Jani at times, but he is still so young and resillient. And he is blessed to hav parents willing to put their lives on the back burner to raise them BOTH safe, healthy and happy. Children who have siblings with special needs follow their parents example, and learn to protect their sibling and are usually very supportive and protective as they grow.

    This world is full of selfish people who would give up. As you have seen obviously. But not you. You are sticking it out. You are a true parent and you are your children’s only advocate. Continue to fight for them Michael. You are putting your story and your life here for people to share and learn and help. Please do not feel the need to justify your actions. Someone will always have a comment or suggestion on how you handle things as a parent, with special needs children and without. People always try to tell me what I am doing wrong as a parent. But they do not walk in my shoes. They do not have a clue how to handle or care for MY children. They base their assumtions on their own experiences and no 2 are alike.

    I am so glad you are sharing your story with us. I look forward to following Jani’s journey. I look forward to reading your blogs. God bless you and keep a hedge of protection around your family. I hope Jani will come soon to her parents, who love her more than anything in this world. We all see that. 🙂

    Sent from my iPhone

  11. sorry if my posts show up a bunch of times! it never showed that it went though. Just kept changing the security code below, and my comment was still on the screen. So I’m sorry if you got several hits from me.

  12. NOTE TO DARCI DIMWITT
    You know, christians never cease to amaze me. The very top of “Michael’s Blog” states NOT FACT, but EMOTIONAL THOUGHTS.

    I am a christian, and I worship God. I do not claim to be better than anyone. And from your comment DARCI, I was disguisted to be called a member of the same religion as you. It is people like you who give Christianity a bad name, and give people like Michael reason to dismiss God’s miracles.

    This family is putting their life on blast to educate people. And as a Christian and a parent, I feel lots of empathy for this family. People like you should keep your comments to yourself. Obviously, your parents never taught you, “if you can’t say something nice, don’t say anything at all!” Words to live by DARCI, take note.

    Michael and family, God knows your heart and your struggle. No one knows why we are put on the path we follow, but God is walking with you, Jani, Bodhi and Susan. God entrusted his children to you to care for on this earth. But in heaven, there will be no psychosis. No pain. Only love. Please try to hang on to that thought because we all feel at times we cannot make it through life on this planet. But I believe there is a better place, and all we can do is live life as honest, loving, caring people who try to reach out to eachother and lean on eachother.

    Keep up the good fight Michael. There are LOTS of us Christians who are not hypacritical, and really do just want to pray for you and others like you.

    Note from Michael: I know, Angela, and I appreciate your support as a Christian. Darci is right that I perhaps got a bit off topic but my purpose was to encourage those that believe in God to take action AS WELL as praying. God wants us to work his will.

  13. Sigh. I so get your frustration. I’ve only heard the exorcism suggestion twice. Usually I hear that we ought to do cranio-sacral therapy, energy work, one of the dozens of diets that people believe in, blah blah blah. It’s just one more symptom of a very specific cultural disease: people don’t understand mental illnesses as illnesses. Still.

    And yeah, what the hell am I supposed to do with all of this? People feel sad and sorry and whatever, but really? Why aren’t they cleaning my bathrooms while I drive Carter to one of his many weekly appointments?

    My IRL support group has had an experience similar to yours with the referral. Psychiatrists and psychologists refer families to our group and wow, aren’t those parents surprised that we’re just a group of parents, scrunched around a table every Saturday morning. When WE are the best they have to offer? Something is very broken.

    And what can we do but take care of our kids, support each other, and keep pushing for change? Nothing.

    I try not to look at the big picture too much.

  14. Jani
    I can well understand how someone in India might view Jani as the reincarnation of a Hindu deity. Her creative powers and language ability are pretty much jaw-dropping.

    But, it was really sad to hear that Jani now seems to want to hurt herself. Hopefully it is something that will pass as she gets older and you can get the right balance of meds.

    Personally I don’t see how anyone can fault your decisions regarding Jani’s treatments. And no right-thinking person will ever second-guess any decision you making regarding Jani’s welfare. Or Bodhi’s for that matter.

    You, through your blogs, are providing a beacon of hope to parents who are going through the same thing as you are. Keep up the good work!

  15. Im dumb founded!!
    Ok, I am in awe… I have prayed for Jani.. read about Michael’s and Susan’s struggles in caring and finding help with Jani…

    But come on everyone… to argue about what or whom can make Jani better is just dumb!

    She already is ill, she is already here, and trying to get “fixed”, is NOT gonna work, what we need to do is get together as human beings, and try to make the Jani Foundatin a reality, and help out the mentally ill kids and their families to prevail in this illness.

    What’s done is done. Let’s get together and make it better!
    Michael and Susan, as always I admire your strength and the love you have in your family, thanks for the update!!
    God Bless…

  16. Dear Michael, I know how busy you are, so please do not feel you need to respond. I’ve been following Jani and your family since the 1st time I saw you on Oprah. I’m writing to give you a small ray of hope from a mother that was and mostly still is uneducated about mental illness. (there’s so much to know, much more than MY brain can ever learn!) One of my daughters while in grade school was “different”, she had a very hard time with school, making/keeping friends etc. At home, from birth she never, ever slept. We already had a 3 yr old toddler and a non sleeping, always screaming infant. While each of us working jobs that had us awake and leaving for work at 5 a.m. each day. Thank GOD we had a great baby sitter who was more like a grandmother and nothing upset that woman! I’ll love her for loving my child until the day I die. Anyway, K grew as normal, but was small for her age, smart, she was and IS smarter than either of her parents. But there were problems. But she came home from school one day , was quiet all evening, for the 1st time EVER, it was a Friday night, the worst night of my entire life, I even remember what TV show was playing in the background (Dallas), anyway, she came in got in bed and said “Mommy, I want to die, but I’m too stupid to know how to do it, I tried to figure it out tonight, but can’t, you always say you’ll help me do anything, so, will you help me die?” answer…NO, No, No, ohhhh HELL NO….she was 8 yrs old. This was in the 80’s, mental health issues , well, there was no help that I knew of, our Dr never called me back. But Monday morning, at 6:30 a.m., I was at the school, and felt much as you do now about keeping Jani alive. If it meant I kept K with me 24/7 and she was uneducated and ALIVE so be it. Better that than to be educated and dead. I did not realize what hell her life at school had become. But that changed and changed forever that weekend. To shorten the story, let’s fast forward. K is now 32 yrs old, beautiful, a HS graduate, has attended college, has several certificates from different courses she’s taken, in a long term relationship, and has a beautiful 18 month old daughter that SHE cares for. It took years, many, many Drs, many different medications, but right now, she’s alive, and healthy. It can be done, hold on, hang on tight, love her forever, the rewards and Jani are worth the angst, the sleepless nights, the tears and the panic. I have faith that your family will make it…ours did 🙂 God Bless you all

  17. support
    It’s a parents normal pain. Can’t wait to get a break to spend time with your spouse, five minutes later it’s too quiet. Only compounded by Jani’s illness and your families struggles. My thoughts, prayers and support go with you and your family every day.

  18. i wish
    I wish it was as easy as celiac disease. I know a kid who acted much like how I saw Jani act in various episodes of various shows. All went away by simply eating zero gluten. Turns out he was getting so few nutrients from food that his brain was being starved.
    I hope people can learn a lot from Jani, if nothing else, than about acceptance. I enjoy taking care of people like her in the hospital, though they are usually much older. They are special, and I think they make otherwise normal people special.

  19. Jani
    I lef this comment yesterday, but it didn’t show up, so I’m trying again…

    I saw you on Oprah and then found your blog and have been reading your past entries. I am astounded at the pressures you and your wife are under. I think it’s become normal to you, but you are living with such an incredible amount of stress, I don’t know why you haven’t had a heart attack, to tell you the truth. My husband suffers from mental illness and I am all too familiar with the ridiculous hoops one must jump through to get help or hospitalization. My husband is an adult (obviously) and therefore able to make his own decisions, which is a bitter irony when he is full blown manic and “decides” to hide from the microphones in the toaster relaying our conversations to government agents, rather than “deciding” to check himself into a hospital. You have to laugh or you’ll cry forever.

    I also have a daughter (two actually) who I worry about constantly. She was so active in the womb I had a tech tell me she was “crazy” and never slept more than 20 minutes as a baby. She had behaviors associated with autism, severe anxiety and other problems as a small child and then changed around age five. Unlike Jani, who became violent and psychotic, my daughter became neurotypical. Her obsessions and fears gradually faded away and she is a happy healthy nine year old now. I worry there is illness lurking in her, waiting to be released in adolescence, and that someday she will be like her father…waiting for the right pill, the right hospital and the right doctor.

    I should be grateful that my husband has found the right meds (for now) and my daughter is in the middle of a happy childhood. Whatever is down the road can wait. Not sure why I just told you all this (twice!), but please know that I am thinking of you right now and wishing you the best.

  20. Mr. & Mrs. Schofield, you are astonishing parents in the face of your daughter’s illness. Many years ago my mom was studying mental illnesses at Fordham University she was studying mental illness in her MSW program. She used to make the comment that,”….when a member of a family is mentally ill the entire family suffers..” Somehow, and despite the many mental ill citizens in our country, our system of health care has emerged to place the brain and its associated disorders as somehow seperate from the body. How this happened and how it has been permitted to continue is baffling to me and I pray your efforts come to fruition for your daughter. I found my own mental health rotations very difficult and I am in AWE of those who specialise in MH who actually work to help their patients.
    You two blow me away the moment in the show when Jani hugs you, Mrs. Scofield, saying “I love you mommy’ is hope embodied by daughter’s ability to express her love for you and Mr. Schofield. YOU are her parents, AND her therapists. May God bless you and your special daughter along with your little boy.

    E.Omps, MSN, RN, CS, FNP-C
    Onancock, VA

  21. I just watch your story Born Schizophrenic: January’s Story and all I could think of when seeing Jani was yeast infection. You can see it around the eyes. Also, both parents seem to have it. I have heard it being used as a treatment for ADD. It maybe worth a try for treatment in your daughters case. See if a doctor gives the safety approval. Hope you have success with treatment.

    Note from Michael: Don’t know where you get that from. Yeast infections are pretty obvious. Doctors can only respond to what symptoms are presented. They can’t test for something when there are no symptoms to indicate its presence. Also, there is no connection between yeast infections and psychosis so even if we had something like that it wouldn’t be the cause. I think what you are seeing is called “being tired.”

  22. Why has no one mentioned ABA to you?
    I watched your documentary last night and have read recent profiles of your struggles. I understand exactly how you feel since I am raising a 15 year old with severe autism. The challenges are pretty identical, but in your case much much much more hopeful. The joy is that Jani has speech, logic, and reason on her side.

    ABA ? What is it? Applied Behavior Analysis – why would it work with Jani if she has not been diagnosed with autism? Because ABA is a scientific approach based on BEHAVIORAL PRESENTATIONS NOT diagnosis. It does not matter what her diagnnosis is, the treatment in this case is the same. Analyze behaviors, devise a plan to treat, and modify as necessary. Her behaviors that I have witnessed are pretty identical in many areas to the behaviors of severely autistic kids with the exception of her lucidy and intelligence, but that is also present in high functioning kids with autism. Are her hallucinations? Maybe and surely they are manifestations of a sensory system out of control. But that also occurs in autism.

    An ABA program would help you and Jani identify goals, provide an educational and behavioral platform for you to have SUPPORT on a daily basis and also offer an educational program that could assurely control manage and keep her safe. ABA plans include CRISIS plans for the circumstances you have described.

    I am ASTOUNDED that no one has offered Jani an ABA based approach, and a school based ABA approach that would include a consultant and therapist dailiy to work with her on a program for her benefit to help control tantrums, OCD’s, compulsions etc.

    All of these things are seen in autism, and ABA has been approved as the scientifically based treatment approach for kids who demonstrated NEED not specific diagnosis. It is absolutely incredible to me that you are doing all of this alone and no one is mentioning an ABA based program for her to help her help herself. A specific goal for this program would include Jani’s self cognitation of delusions, hallucinations etc and a plan to identify what is real, what is imaginary and she is so brilliant I believe she could has she m atures be taught to self regulate and recognize her own aberrant behaviors.

    University of Calif at Santa Barbara has huge input into behavioral psychology and ABA services. Dr. Koegel is out there still I believe, Bryna Siegel.

    I hope and pray that you get the help you need for your daughter. Jani presents to me as a “hybrid” she is not all of one thing or another, and her symptoms should be broken down outside of the diagnosis and treated separately with a ABA behavioral plan, and teaaching stategy.

    She is not schizophrenic, she is Jani, she is 7, she is a girl, she is a lot of differnet problems rolled into one, but they need to treat specific sets of symptoms and it appears they are just labeling her schizophrenic and then not treating anything specifically, but shoving pills at you. I just fear that is not the answer in its entirety. A behavioral psychologist would not try to delude Jani that her cats and rats are not present, but instead acknowlege them, help her differentiate from real and imagined and give her a strategy to control them.

    I hate to see her drugged when she is so brilliant I believe she can be taught to self regulate. If she understands these things that are happening she can also be part of the solution to control them. They may never go away and making them go away may be unrealistic, but to allow her to understand her disorder and for her to differentiate real from delusion will be the key to her survival I believe.

    Cate, parent to a child with autism who has and still does live the crazy life of living with a child who has many needs.

    Note from Michael: I think you are a bit harsh with the doctors. They don’t just “shove pills” at her. What annoys me about your post is that you seem to imply we have no input on her care and just blindly listen to the doctors. Hardly. We are the primary advocates for her care and we are the ones who push for medications. You are assuming that Jani can control her actions based on learning. We do not know if that is possible. But no one, neither UCLA nor us, ever denies that what Jani experiences is real to her. We try to get her to work with her hallucinations all the time, but there is only so much control that she has and without the medications she has no control at all. No, we have not been offered any ABA. Services that exist for autistic diagnoses are more often than not not available to kids with mental illness, probably because our society is more afraid of mental illness than it is of autism.

  23. You and your wife are amazing parents. I saw the episode on Jani last night. She is a remarkable child. Wishing the best for you and your family…..

  24. I saw the Discovery program last night. Jani’s boundless energy (when she’s herself) put me in mind of that number by the Refreshments, Cadillac Rock. It’s Johan Blohm’s rockabilly piano that does it. Jani seems to sparkle and run in the same sort of way Blohm’s hands run up and down the keyboard.

    Anyway, we all devoutly hope she’s herself soon.

  25. I’d just like to add myself to the long list…
    … of people from all over the world who have read Jani’s story and keep thinking about her and your family and, by extention, about all the children and families out there facing the same battle. And there are probably so many of them – for every one who came in touch with you because there was probably no one else there for them to turn to, there must be 1,000 similar cases around the world, especially in places where things like that are best not talked about in our often hypocritical societies. I feel for you. It’s the only kind of support I can offer right now but I truly do. Keep fighting.

    Ranya – Piraeus, Greece

  26. Dear Michel:

    Sounds normal to me, the fact that even though Jani is at the hospital you are still on her apartment and that life “stops” it sounds like to you it would be difficult to relax and let your guard down because then it would be very hard to get back up to be the strong guard of Jani when she comes back.
    I just wish you the best continually and to Susan and Jani, that things will start to look up financially and medicines will work ans you all will see a huge recovery.
    xoxo
    Sophie

  27. What a heartbreaking decision to have to make. You know she’s a genius, you revel in her insight and finally you have to decide that a life that doesn’t give its all to nurture those gifts is safer than the alternative.

    I recently saw Temple Grandin speak. She’s written a lot about how the sensory quirks of her illness, which led to debilitating anxiety as a child and adolescent, enable her to see what others miss and make a profound impact in measures of animal welfare.

  28. I began self-injuring long before I entered Kindergarten, and I did it no matter the state of my psychosis. While eventually there would be demons and spirits that hurt me into injuring myself to make them give me at least one moment of peace, that was not its main function. As somebody else has mention, self-injury is a, however negative, coping mechanism that can be binding and addictive. It develops when we do not know any other way to make the pain, the anxiety, the rage go away. In that moment when the pain gets so strong that I can think of nothing else, and my only focus is to make it go away, the scratching, hitting, burning, cutting, an whatever else I can manage, bring a few seconds of relief. When I self-injure, it feels as if all of the pent up suffering drains out of me, and I can relax. The world isn’t as frightening or unbearable, and the spirits have a harder time reaching me. Of course, it only a temporary fix, and all the pain will came flooding back in – this time, with a memory that making myself physically hurt drove the storm in my head away.

    This is part of a poem I wrote, titled “The Forest Between You and I”, that mentions self-injury.

    “The world seemed to get foreign and frightening then,
    me just an alien not meant to even be born.
    Watching as all my friends danced through each day,
    handling things as they came and forgetting on the way.
    They made it seem as if it was an effortless task;
    one that I could never come close to achieving,
    even though I tried harder than the spoiled brat they claimed I was.

    No matter how small something supposedly was,
    when it came up to bite me I shrieked and tried running away;
    but the forest’s branches would tie me up in a knot,
    refusing to let go no matter how hard I fought and squirmed,
    until the pain was so strong I could think of nothing else,
    forgetting about the world beyond the Hellish forest,
    and scratching up my arm as if life depended on it – because, in that moment, it does. ”

    The self-injury will not go away unless you can show her a coping mechanism that works either just as well, or better. If she can discover that, then there would be no need to hurt herself. Why would she, when she has this new thing that makes her feel even better, possibly for a longer time? I only discovered mine after my last hospitalization, and that was poetry and art (usually as a pair). It allowed me to not only give my thoughts words an imagery, something I could use to show people what was going on when I had no words; but it also allowed me to take that rage, that pain, that sadness out on the paper. The outcome doesn’t have to be great. Such as when I draw what I like to call my “Anxiety Drawings”, which start out as just dark scribbles that only sometimes form the shape of anything from our world; however, it always expresses how I feel. My weaning from self-injury wasn’t easy, and for awhile I still had frequent cravings. Eventually, though, the need began to ebb and is only resorted to on rare occasions. Things aren’t perfect; but in terms of self-injury, they are better.

    Jani is obviously a very creative person, and she seems to like to draw. Use that to help her. When she gets upset and wants to hurt herself, hand her paper, crayons, and something to lean them on (always have them with you). Don’t say anything at first, just see what she does. If she doesn’t start drawing, maybe encourage her to draw instead of hurting herself. Word it any way you feel best: “Drawing might make you feel better. Want to try it?”, “Maybe if you get angry/upset at the paper, you won’t need to hurt yourself”, “Why don’t you try drawing what you feel/are seeing/what’s going on with your brain, etc?” – whatever works. If she wants to scribble and rip up the paper. or just tear it up, let her. It all shows what’s going on. If she refuses, try at other times, and make sure she has paper and crayons available in every room of her house and with her wherever she goes. If she doesn’t take to it, or it doesn’t her, try the next things. Once she finds that one mechanism that works, you’ll know.

    Note from Michael: Thank you, Eri, as always for illuminating for me what life might be like for Jani.

  29. So I have not visited this site in a while. But after the last IEP we meaning the x and I have agreeded to residential. Hopefully it will be in state at this point I feel as though there is no other option. I always look towards what you go through with Jani and how much you are able to keep going. But for me I am sad but will be greatful to the break but in mind my son is my life. I dont know what I will do without him..

    Note from Michael: It is a heartwrenching decision to have to make, and one that is never made lightly. It is the goal of the Jani Foundation to make it so one day parents don’t have to make that decision because we will provide in home assistance.

  30. One more thing. I think its dangerous to have these types of kids around kids that are more..can I say normal. My son is around my grandaughter who is three now she is starting to show some of his impulsivity behavior and scream like him its not good. With residential maybe my grandaughter will also be able to be a little more adjusted sorry…I know that wont be a option for you maybe Bodhi cant play with her now..? We just started tegretol for the impulsitiviy and angers issues but its not working meds work and then after a while they dont. Tiring of hopitiliaztions those are not our answers either.

    Note from Michael: I don’t think there is an answer. There is no quick “fix.” It just comes down to quality of life for your child. If you think your child’s quality of life would be better in residential, then that is what you have to do. As for your granddaughter, it is hard to say whether what you are seeing is mimicking or her own as yet undiagnosed issues. There is no way to tell at this point.

  31. Thank you…
    Thank you Michael for being so real and so transparent. This is the hardest and most rewarding thing a person can do in life, to safeguard the well-being of another. I have 5 children all of whom have either learning disabilities or other special needs. They are 12,9,7,3 and 2 years old. Their Dx’s are autism/asperger’s, epilepsy, microcephaly, ataxic CP, Agenesis of the Corpus Callosum, Conduct Disorder, Early Onset Bipolar and ADHD. 3 of 5 have autism dx’s. I can truly say I understand and I applaud you. If I lived near you I would be first in line to offer hands on help. In 9 years of being a foster parent I am no longer afraid to love any child. My time is crazy limited but I would love to offer friendship and support and more as time allows. I and my husband are stay at home parents. My health has been affected in the form of Multiple Sclerosis so my husband has no choice but to be at home. Sorry for the long post I just felt compelled to give you an atta boy. I think you are a real person with real struggles and validation never hurts. Stay strong. I read that you believe in God so hopefully I don’t offend. I believe Jesus is coming soon and he wants more than anything to take our children in his arms and kiss all their pain away and give them everything heaven and life has to offer. Until then we must fight for our children as only we can.

  32. Compassion
    Your charge hit home. Immensely. There is nothing but for the ones fighting on the inside to take that experience out.

    -Sarah

  33. Executive Director
    Hi,
    Your story about your daughter is moving, your transparency refreshing.
    My wife and I know the horror of mental illness. I have had bi-polar 2 disorder since 1985. In the year 2001, I almost died from lithium toxicity.
    On September 11,2001, our daughter Lindsay who was eight months pregnant, was killed by a heroin addict. He was driving car while he had high quantities of cocaine, marijuana, and heroin in his blood stream.
    He hit her car head on. We (my wife and I) and two of our children, Brant (16)and Tyler (11) were directly behind her and saw the whole thing. Since then my wife has needed an antidepressant. Lindsay suffered from separation anxiety at an early age and later panic. Brant is now 25 and is presently getting Electro Convulsive Therapy (ECT) in San Francisco.

    We have worked in urban Grand Rapids with the homeless schizophrenic for five years. We now have started our own nonprofit, Heartfelt Ministries.
    If you would like a copy of our book, Broken Minds, Hope for Healing When You Feel Like You’re Losing It, please email me where I can send it to you. My email is bloemsteve@yahoo.com.
    I will be praying for you and your wife and of course Jani.
    Steve Bloem[u][/u]

    Note from Michael: Dear Steve, I am so sorry for your loss but I commend what you are doing. It is truly God’s work.

  34. Jani Bags
    I discovered your blog about a week ago. I have gone back to the beginning and am reading forward. I only jumped to today’s post so that I can post this comment.

    One of your previous posts talks about being kind to the homeless on the streets, for we don’t know their story and how they got there. That really hit home with me. I have decided to do what I can to make a tiny difference in the lives of those homeless that I come across. I have made what I am calling my “Jani bags” for homeless people. I purchased some cloth grocery bags and am filling them with supplies such as socks, band-aids, Neosporin, toothpaste, toothbrush, and tons of sample-sized products like shampoo, deodorant, lotion, sunscreen, etc. Then I added a wash cloth, liquid soap, T-shirts, toilet paper, disposable razor, and then onto the food items like a jar of peanut butter, Gatorade, canned fruits, crackers, and a large trash bag to keep their things dry, and so on.

    I put one in my car every day and am keeping an eye out for someone in need as I travel to work and then errands and home again. I have given away two bags so far, and both recipients seemed to be happy to receive them. I hope this will in some small way make at least a little difference in the next few days for that recipient.

    I don’t have a ton of money, but I’m going to try to keep this up as long as I can, and I wanted you to know I’m doing this in your daughter’s honor. And I hope if anyone who reads this has a family member on the streets in California, rest in the knowledge that if I see them, they will be given a Jani bag and hopefully feel cared about for just a moment.

    I will continue to read until I catch up to the present blogs. I commend you, Michael, and your wife, Susan, for trying to give Jani the best possible life she can have.

    Note from Michael: Wow, Peggy. I am honored that Jani inspired what you are doing with the “Jani bags.” This is exactly what I want readers of this website and blog to do. Prayer is fine, but get out there and do what Peggy is doing and make this world a kinder, better place. I doesn’t need to benefit us. We are okay. There those in the world who need more than we do. My hat in off to you, Peggy. Thank you.

  35. HOW IS JANI???
    Hello Michael. I have been checking back often, hoping to catch your latest blog, telling us how Jani is, and if she is home yet. Please give us an update when you can:)

    Note from Michael: I am sorry I haven’t had a chance to do a new blog recently. Jani is doing okay. This seems to be one of the better periods. Two medications were tried during her last hospital stay (she is home now) and both had to be abandoned. In the end, she left on the same meds she went in on, but has generally been more “present” and social and happy. How long will it last? I don’t know, but I am enjoying it right now.

  36. Jani bags!
    To Michael: you are an amazing father and human being. Your children are so lucky to have you as a dad, and our community is lucky to have your experience, strength, & hope. I can’t thank you enough for your honesty, it has helped me more than you know. I have struggled with mental illness most of my life, & recently graduated with a degree in social work. My internship at an acute unit changed my life, & I continue to work at a psych hospital. I love my job & my patients, esp the kids. I try to do everything in my power to help those in crisis, bc i know how it feels. I wish I lived near your family, I would love to volunteer with Jani, she seems to be an awesome girl, but I know you’re already aware of that. lots of love to you & your family

    To Peggy: what an awesome idea!! I love that you’ve created “Jani bags”, & I just want to tell you that I too will join in. I often give random items, blankets, food, hot coffee, umbrellas, socks, etc, but I never thought to put it all together. Thank you so much for sharing. I’m currently in Houston, & everyday I see the homeless & sick, and I sometimes get overwhelmed not knowing what to do to help. Well I know now. I’m also writing a mass email to send at the hospital I work at to spread the idea & to ask for donations of those products you mentioned. ‘Jani bags’ will spreading around Texas soon! One idea I wanted to add, albeit nonessential, is to add paper, pens, & crayons to the bags. Another comment on here gave me this idea, & made me think that many of those on the streets are blessed with amazing creativity, but few outlets to express it. Just an idea, it might brighten someone’s day even more. 🙂

    Note from Michael: Thank you, Ashley, for doing what you are doing.

  37. Jani
    Just wanted everyone to know that the Discovery program has been posted on Youtube. Don’t know how long it will stay up. It’s posted under the title: Schizophrenic Girl Struggles To Find Reality

  38. Stay Strong
    Hello, I just wanted to say that I am a Bible believing Christian who firmly believes in the healing powers of Christ and that He understands your struggles and what you are going through. I think we as a community need to wake up and love one another as the Bible commands because it’s always the innocent that suffers the most and who are not treated well by society. Hopefully now we can all see that a cure for scizopheronia is crucial if we are to heal people from this deveasting illness and to learn that there are people out there in this world who need our help and it’s our responsibility to help out those in need. My heart goes out to you and your family and I will continue to pray for you and Jani as well. God Bless.

    (John 3:16)-The Gospel of Jesus Christ.

  39. Well wishes & prayers
    I’ve just started following Jani’s story – saw a thing on TV. As a parent, I just can’t imagine how difficult this all must be. Your daughter will be in my prayers.

    My uncle developed schizophrenia at the age of 54 (they called it late onset). It was horrible. We felt like we were losing him. I do believe that he has Asperger’s, too. In the end – we discovered that he had stopped taking his thyroid meds following a leg injury & that seemed to be the culprit – since going back on synthroid, he was released from the psych center (we were told he’d never leave…once you’re in there you don’t leave). He was out within four weeks of getting the meds back into his system. He’s back to his normal, quirky self…at home. I think that maybe his possible Asperger’s and the depression/thryoid being out of whack were a terrible combo. Medications that typically help with schizophrenia were not helping him…other than to sedate him. I can only imagine the advice you must get constantly and I realize that your daughter’s situation is much different than my uncle’s, but if there is even a remote chance that his story can be useful for your family, well – I’d feel terrible not sharing.

  40. Jani’s Journey
    I just started following your daughter’s story…saw a program on TV. My thoughts and prayers are with your family…especially Jani.

    Now, I can’t even imagine the amount of advice & the number of suggestions that you must receive, so I almost feel bad sharing my uncle’s story…but I’d feel horrible not sharing, on the very slim chance that it might be helpful. My Uncle, I suspect, has Asperger’s. He’s always been quite quirky and referred to as a bit odd. A few years ago, he began to have problems. We were losing him. After rounds of in and out’s with the local hospital, he was finally diagnosed with “late onset schizophrenia” (at the age of 54) and was admitted into the psychiatric center. Once you’re in there, we were told…you never get out. He hadn’t responded to meds…other than to become highly sedated and we couldn’t keep him from trying to hurt himself. Well, come to find out, he had stopped taking his thyroid medication some time before the onset of his mental illness. He began taking his synthroid again & within 4 weeks…he was back to normal, quirky self & was released from the psych center.

    I realize that your daughter’s and my uncle’s situations are quite different and your daughter has probably undergone every test out there, but again…I’d feel bad not sharing. If this information does not help you…then maybe someone else.

    Note from Michael: Not at all. Thanks for the suggestion. As far as we know, Jani’s thyroid function is normal. She has had a complete thyroid panel done due the risk to thyroid function from the lithium.

  41. and PS…
    I believe that you and your wife are taking extraordinary care of both of your children. Your decision to choose certain meds over others is certainly not an easy one and as parents you must do what’s best for your kids…both of them. You appear to be making your decision based on what’s best for Jani and her brother…and many parents have a difficult time with that. It’s not an easy thing balance…and at times one or the other with get “the short end of the stick” – so to speak. Your choices are not easy ones and anyone pushing for you and your wife to make different decisions are probably well meaning; however, I have to wonder if they realize the stress of having to make some these choices in the first place. I simply cannot fathom all of this…I couldn’t even begin to put myself in your shoes – I’m sure that the documentary only touched on the surface of what your family encounters on a day-to-day basis.

    Also – kids are resilient…I think that your son will understand. He’ll be in my prayers, too! The examples that you and your wife are setting for him are wonderful.

    🙂 Lori

  42. response to Cate
    I was about to stop my postings at two, but then saw the post from Cate in regards to ABA and really felt the need to respond…

    I work with kids who have autism and we teach using ABA. Many of the children that I work with have learned “bad” behaviors over time. Essentially, they have learned a way to get their needs and wants met, but in a socially unacceptable way. ABA works for these kids. If I have a kid who displays aggression when presented with work…well…I can teach that child to ask for a break or a delay in the work. Over time, I am able to shape it all up. Fewer breaks and longer work periods. Sometimes it’s easy peasy and sometimes it is a struggle…but in the end – I can teach a new skill to replace a socially unacceptable behavior. I have come across kids; however, whose “behavior problems” are not a learned set of behaviors….well, probably some are because let’s face it…kids learn “good” and “bad” behaviors regardless of everything else; however, these kids have something else going on. My ABA style approaches may help some, but they do not get to the crux of the matter with these kids. With these kids I end up hoping for good days. That’s all. For one child, when we were working on the IEP goals I actually said, “Honestly…my goal for him is that he’ll be able to just be happy. No more hurting himself. If he grows up and gets a job and all that…bonus…but for now…I just wish he’d get through one day without all of the self injury. It would be great if he could even string two day together.” What’s “funny” is that Jani’s dad said just this in something that I just watched. I have said this about a few kids in my day…maybe four in my 18 years of doing what I do. It’s something different than discipline or teaching…it is something else.

    You mentioned it is based on behavioral presentations – which is true, but we have to be able to assess the function of the behaviors. When kids present with problem behaviors and they serve no function…this approach would be less (if not completely) ineffective. I can teach a child who presents with “bad” behaviors in order to escape something, to take a break. Attention seeking behaviors can be replaced by more socially acceptable way to gain attention and probably waiting skills also. If a child engages in certain behaviors to get things…well…I can teach him or her to ask appropriately and waiting skills wouldn’t be a bad idea either. If I cannot pinpoint a “why” then I cannot create a lesson plan/treatment. Don’t get me wrong – I LOVE ABA, but for those kids that I described, it didn’t help a whole lot. I am not sure that Jani would benefit from your run-of-the-mill ABA style intervention. I am almost positive that she wouldn’t, based on some of the things that her parents have said – that paired with the fact that a functional analysis of her behavioral challenges poses some real challenges. She hurts herself and her brother…assessing these problems would take a team of highly trained professionals. With all of that said – Kennedy Krieger Institute has an inpatient program that really looks at meds & treatment plans in a very systematic approach – in a very clinical setting (all highly trained people there). I have never been there to observe, but my coworkers have and a few of our students were treated there. This place is for kids who are very challenging and require around the clock care. I don’t know enough about KKI or Jani to state whether she’d be a good candidate, but if I were to suggest the ABA route…I think that she’d require more than what is typical. I do not know if there are any “KKI” type places in California, but KKI takes kids from wherever.

    Cate – I think you have a good heart for sharing, but I think perhaps that you have a different situation completely. “Shoving pills” down kids throats DOES happen in the world of autism…and I must say that in many cases, this occurs prior to a good behavioral run of things. Bad practice in my opinion, so I am on board with you there. With schizophrenia; however, I think it’s a different world.

    🙂 Lori

  43. PSS…
    Jani’s dad wrote…“Schizophrenia survives in the human species and is found in all human cultures (although to different levels) only because it must be attached to something that can increase our chances for survival. If it was only negative, it would have been wiped out. Throughout history, there have always been those who fought to keep the mentally ill alive because they saw value in those who suffered from it.”

    Okay – so, now I’m posting again and appear to be a creepy stalker…but I keep finding things that catch my eye. I could apologize, but what’s the point…I’ll only find twenty other things to respond to. Please let me know if this is a nuisance!

    There are a few passages in the KJV Bible that explain this. For example: John 9:3 states, “Jesus answered, Neither hath this man sinned, nor his parents: but the works of God should be manifest in him.”

    Aside from the possible species-survival aspect, I think that “we” as a society look at “illness” incorrectly. Instead of segregating people, we should embrace them. I am not perfect. Nobody is. Who is to say that one person is “better off” than another…or more “socially acceptable” than another? Perhaps it is that each person has a different goal in his or her life. God uses each one of us differently. As a born-again Christian…I can say that I see a TON of God’s Graces in your family. While I can acknowledge the struggles that you go through and I’ll pray for you, I must say that God’s Grace and his Glory are demonstrated in your situation. Your kids are blessed. Kids…no matter who they are and what problems that have…are a blessing.

    Okay…now I promise that I’ll stop posting for today!

    Thanks for sharing Jani’s journey and God bless!

    Lori

  44. re: Jani Bags
    Cheers to you Peggy for coming up with such an innovative and kind service in Jani’s honor! What an inspiration:) These kind of service projects could really take off. Maybe they could become part of this website? In addition to wanting to help the Schofield family I am already trying to think of a “Jani” project I could get going in my community.

    I agree with you 100% Michael, prayer is great but ACTION is key. Part of the reason I get so much joy out of being a School Social Worker is because I can actually help people get the tangible things they need to improve the quality of their lives. Whether it be counseling, cash assistance, food stamps, housing, medical care, or all of the above. Also Michael, please know that us social workers (the good ones, and I am a good one) are as frustrated with the system as you are.

    Just an idea but have you thought about putting together a “wish list” of material things your family needs in addition to the PayPal option? Maybe with links to Target or another popular chain store and have the items shipped to you and Susan directly? I’m thinking clothes, household supplies, toys, anything really. I know cash is what your family really needs to keep going but many people like to donate specific items. Some will ONLY donate items and not cash, I learned that quickly in fund raising projects. Just a thought.

    Your words, “This can be the greatest thing you will ever do with your life.” are so inspiring. Michael I don’t know why your family was “chosen” to fight this battle. I don’t even think “chosen” is the right word. All I know is that when faced with circumstances out of your control, the only thing you can control is your reaction.

    You and Susan are WONDERFUL parents, you know your daughter the best and you know what she needs. Never doubt that or feel like you have to explain yourselves. The fact that despite your exhaustion you are educating and advocating for other mentally ill children is remarkable. It shows a tremendous generosity of spirit. You are finding meaning and purpose in a situation that would break most people. I think there are big things in store for the Jani Foundation and I plan on being a supporter.

    p.s. The siblings of children with mental or physical disabilities tend to become intuitive, empathetic and compassionate adults with the proper parental support. Not only do I think Bodhi will understand, I think he will become a remarkable young man someday who will join you in battling Jani’s disease.

  45. donations
    I’m very wary of online money transactions…even paypal. I just don’t do it. I would send a donation to a PO box/address though.

    Thanks!

    🙂 Lori

    Note from Michael: I understand, Lori. Unfortunately, we don’t have a PO Box and I don’t like to give out our address. The only other option I can think of is to send something care of Shari Roan at the LA Times. Shari was the reporter who wrote the original story about Jani in June 2009.

    and whoops…i double posted my first post 🙁 sorry!

  46. I feel exhausted after reading your blog, emotionally and physically, and I simply admire your strength and determination. I know we tend to step up to the plate to handle what life has given us but I have to say I don’t think I could do what you have done with and for Jani. I agree that no one will ever care about or for her like you (her family) can and that she will become just another ‘patient’. But what about your health and all the stress you are under? God forbid something happens to you. Not only will Jani lose, but so will the rest of your family. There is no advice anyone can give you that you haven’t already heard or thought about yourself I’m sure. I really feel for you and your family. With no cure, there is no end, no light at the end of the tunnel. God bless you for your patience and perserverance. I just wonder how long it will take before somebody decides this is a cause that needs some real attention paid to it in every aspect. Maybe when someone in their family is diagnosed????

    Note from Michael: I have to believe there is a light at the end of the tunnel. Things are getting better. Will Jani ever be “cured?” Probably not, but that doesn’t mean that she hasn’t improved significantly since she first went to UCLA in January 2009. I think we tend to look for “quick fixes” in our culture and this is not a quick fix. But that doesn’t mean that Jani can’t live a happy and fulfilling life. At the end of the day, what she has is not that different from any other chronic disease, like diabetes, that needs constant management.

  47. where to begin?
    WOW! I believe you are following just what God has intended from you. You have reached out to SO many people, providing support in a lonely and confusing situation for many families and people who are effected by mental illness. I am a “new” child therapist who has worked for several years in RTF’s and schools focusing on behavior management and kids with Autism. I am now in a community mental health clinic and have several children with the diagnosis of schizophrenia, shizo-affective and phsycosis on my case load. I have been reading several books over the last year to better educate myself but am compelled to let you know the relief of understanding that I have from watching your documentary and admiration as you reach out to others. I would like to be one of those health care providers who will refer parents to your support group as many feel so misunderstood and stuck. I, myself have been effected by a mood disorder from a very young age and did not recieve treatment, even after pleading with my parents. My son also suffers the same way but through education and support from parents like you, any challenges that arise also become opportunities for growth. God blessed you with the gift of Jani, you have embraced your gift, held it close to your heart and inspired so many others to do so. Thank you so much for sharing your story! God is with you and in you! – Tiffany

    Note from Michael: Thank you, Tiffany, for being willing to think outside the behavioral box as a therapist. There is a massive shortage of therapists who understand psychosis, as, well, none of us really do until we experience it and even then it is hard to understand. But what I admire about you is you are jumping in and trying to help, and being willing to learn. Please do feel free to refer any families to our online support group.

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