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Fader

It’s been a while, I know. I’ll get to that in a minute. First, some business.

 

The blog might be a little hard to read. If so, I apologize. I have been tinkering with the website trying to get it ready for the release of January First, and clearly I am no web designer. I always find it funny when a message arrives in my email inbox via this website with the introduction “Please make sure Jani’s parents see this…,” as if Susan and I had “people” who served as gatekeepers. I am not quite sure why this is. Is it because we have been on TV? Let me tell you something about TV. It doesn’t change who you are. It doesn’t change your life. There are no “people” running interference between the readers of this website and me and Susan. Regular readers of the blog know that, but out of the thousands who hit the website every day, most don’t read the blogs. Maybe because it is too hard to find. Maybe they would if the blog was on the front page. But I haven’t figured out how to do that yet.

 

Second piece of business is that the follow-up to “Born Schizophrenic: January’s Story” that first aired on Discovery Health in May of 2010 is premiering this coming Sunday, June 3rd, at 10pm, on Discovery Fit & Health. Titled “Born Schizophrenic: Jani’s Next Chapter,” it was shot this past January, February, and March. (Here is a link to a preview video: http://health.discovery.com/videos/born-schizophrenic-janis-next-chapter-2-steps-forward-1-step-back.html “Psych Week 2012” on Discovery Fit & Health kicks off at 9pm EST/PST with the original “Born Schizophrenic,” followed by the new “Jani’s Next Chapter” at 10 EST/PST. Susan and I will be conducting a live chat during the premiere at 10pm EST on Discovery Fit & Health’s website http://health.discovery.com/. I will update with more precise information and a link to the live chat on Sunday night, June 3rd, as soon as I have it.

 

Which transitions quite nicely to where I have been. The first “Born Schizophrenic” had to establish the backstory of how Jani got her diagnosis. The upcoming one didn’t have to do that so the focus was more what life is like with a child with schizophrenia.

 

In my earliest blogs (which were really just Facebook statuses, and which can still be found at www.januaryfirst.org until June 30th (at which time Apple ends MobileMe, which is where the pre-2010 blogs sit), I wrote, sometime in March of 2009 during Jani’s four month stay at UCLA, that I wanted UCLA to “call a spade a spade,” meaning I wanted them to actually diagnose Jani with schizophrenia.

 

“Why the hell would you want that?” some may ask, those who do not have a severely mentally child.

 

The answer is very simple. If someone you love is wasting away, losing weight and energy very rapidly, will it help if the doctors don’t call it cancer? It doesn’t change the symptoms. And for those of who are dealing with or have dealt with cancer, you know that doctors avoid using that word for a long time, too, even though everybody knows damn well what it is.

 

Those who have criticized me for supposedly “pushing” for the diagnosis of schizophrenia don’t know one thing and forget the other. What they don’t know is that there was no other viable diagnosis. I wasn’t “pushing “ for schizophrenia over another diagnosis. I was “pushing” for schizophrenia over a nameless disease. And what the armchair diagnosticians forget is that the symptoms were not only present but getting worse. It wasn’t the violence. It wasn’t the hallucinations. It was that the hallucinations were TAKING Jani away from us, which isn’t like the rush of terror you feel when you lose your child in a store. That’s pure panic. I’ve been in that place, too. In that place, you have no time to think. You are just running around, screaming your child’s name, praying to God that if he will give you just one more change you will never take your eyeballs off your child again. You run through the store, bargaining with God (and everybody is a believer in those moments).

 

No, Jani was disappearing before our eyes, slowly. Everyday we saw her for an hour or two but every day there was less and less of that hour or two that she was really “with” us. Getting her to engage with us was getting increasingly difficult. I wouldn’t have cared if she was engaging with anyone. But she wasn’t. She was slipping away, moving in and out of our world like a ghost in a window. Every day we would try to spot a glimpse of her in face, a glimpse of who she had been. And everyday there was less and less there. She was becoming a shell.

 

Jani was the ghost in the shell.

 

Parents who have watched their child die in front them know what that is like.

 

And you still bargain with God.

 

But God doesn’t answer.

 

So all you do is think.

 

You think about what you know. You know what you see before you is not your child. It is something else that is taking over.

 

I get why some people will still write to me telling me Jani is possessed by spirits. Demons. Because demons are more tangible than an illness. You can imagine grappling with the demon, trying to get your hands around its throat, trying to kill it, trying to drive it back to hell, even if it takes you will it like Father Karras.

 

“The Power of Christ compels you!”

 

Those people who want to label Jani (or the Jani they have seen on TV) as possessed want to label her for the same reasons I wanted to label her.

 

  1. Because if it a demon/schizophrenia, then the child is innocent. The child is not guilty. The child is not to blame.
  2. Because it is human nature to want to name our enemy. Because to name it is to take back some power from it. Only when the demon/schizophrenia is named, is dragged into the Light/Light, can it be fought. Only if you know its name can you ever hope to defeat it.

 

Of course, that is pure bravado. But that is why I “pushed” for the diagnosis of schizophrenia. Show yourself, demon! And let me fight you!

 

Except that isn’t what actually happened when Jani was finally officially diagnosis. I won’t go into a lot of detail because this is a key part of the book, but I will say that it wasn’t a doctor just sitting down with one day and saying, “Jani has schizophrenia.” For my cancer survivors and readers who have lost someone to cancer, it was more like that moment when the doctor takes you aside, tells you sit down, sits down as well. And pauses. The Pause. For the first time, the doctor has trouble looking you in the eye.

 

And you know.

 

You already knew. And you thought you were ready. But now the moment is here and you suddenly don’t want to hear it….

 

“We have to consider the possibility of….”

 

Or

 

“We’ve ruled out everything but….”

 

That’s how it happens.

 

And even though you knew in your heart of hearts, even though you’ve been expecting this, your entire life contracts into that single moment. You hear the sound of your own heartbeat in your ears as your blood vessels constrict.

 

The demon has been named.

 

But you feel no power.

 

You feel the opposite. Suddenly, the enemy that you thought you wanted to see rears its ugly head above you and opens its jaws. The Beast is huge. And you look up at it, at the enormity of it, and you realize you cannot beat it. You are nothing next to it.

 

It is the Giant.

 

And you are not David.

 

You are not Hercules.

 

You are not Odysseus.

 

You just a dad, a mom, a parent.

 

You are just human.

 

And It is not.

 

And what happens next is the reason doctors are so reluctant to give THE diagnosis, be it cancer or schizophrenia. Because they know what is happening inside you at that moment even before you do.

 

Suddenly, you can see the future.

 

Before you couldn’t really see it. The future was just an amorphous set of ideas in your head: Maybe my child will go to Harvard. Maybe my child will be a musical prodigy. Maybe my child will play shortstop for the New York Yankees. Maybe my child will be a movie star. Maybe my child will dance with the Moscow Ballet. Maybe my child will be President of the United States of America.

 

All of those “maybes” shatter right in front of your eyes to reveal a future you never imagined.

 

Maybe my child will wind up homeless when I am dead and gone.

 

Maybe my child will commit some petty crime because of his/her illness and wind up in prison (the modern psychiatric hospitals).

 

Maybe my child will kill herself.

 

The first set of “maybes” are your wildest dreams. And if they don’t happen… if your child carves out a very nice life for herself selling insurance in a cubicle…. Oh, well.

 

The second set of “maybes” are nightmares you didn’t even think could happen. Not to your child. You knew they happened, but not to your child. And they are a hell of lot more likely to happen than your child playing shortstop for the New York Yankees.

 

That is the agony, the agony I didn’t see coming when I “pushed” for the diagnosis. I didn’t see what could happen.

 

And what will happen. Because one of those three options above WILL happen.

 

And the only thing between your child and that future is a couple of pills and you.

 

Just you.

 

You feel up to it?

 

Because what you now have to do is change, if you can, the outcome of the future.

 

The odds are stacked against you. The Beast is far more powerful than you. And it wants to drive you away so it can have your child or your loved one all to itself.

 

You have two choices, and both require going all in. In a Texas Hold ‘Em poker analogy, here is the flop, the turn, and the river: Two aces, two kings, and a queen.

 

And you are holding a two and four, off suit.

 

Either you bluff or you fold.

 

Folding wasn’t an option for me. The stakes were too high. But many do fold, usually the fathers. Unfortunately, once you fold, you can never get back into the game.

 

So you bluff. But you got nothing. Which means you have to bluff big. All in. Two apartments to keep Bodhi safe and Jani’s stress level down. Dropping the number of classes I teach to the bare minimum to keep our health insurance because stability requires that neither Susan nor myself get too stressed out by taking both kids. Stress is the enemy of stability for someone suffering from a mental illness. Begging complete strangers on the internet for money to keep the roofs over our heads and food on the table. And being willing to be completely fucking honest. By the way, that is how you get donations. You make your life a complete open book. You leave nothing of yourself for yourself. You put everything on the table.

 

That is what I did three years ago.

 

And I am still sitting at the table, waiting for the schizophrenia to call my bluff. Sometimes I think it is going to call. Jani is already on the strongest medications available, just to give her some semblance of a life. If it calls, I got nothing left. If it calls I will reach across the table like in the old West films and grab its hands as it tries to take Jani. If it wants to take her, it is going to have to fucking kill me first.

 

And sometimes, like in the last few months, with Jani doing THREE HOURS with her actual special ed class, with other kids, twice a week, I start to think it’s going to fold.

 

And then it does something to remind me that it will never fold.

 

Sometimes, it is the simple act of stepping out onto my balcony to have a smoke and watching the neighborhood kids, kids Jani’s age, riding their scooters and shouting out to each other. The simple act of one boy shouting out another boy’s name. “Ian!” And watching Ian turn around. “What?”

It’s a simple act. Call your name and you respond.

 

A simple act that Jani struggles to do. Respond to me and Susan? “Do you want mac n’ cheese for dinner?”

 

“Yes.”

 

“Do you want to visit the Animal Shelter?”

 

“No.” (Always worrisome when she says “no” to that.

 

Respond to her teachers?

 

Delay. I watch her when they ask her a question, a question she once knew like the back of her hand or something she just learned. It doesn’t matter. A pause. The Pause. She moves her legs around. She puts her pencil to the paper and then pulls it away again. She looks around the room. She looks up at the ceiling.

 

What is happening? Is she trying to remember what she just learned? Is she trying to think through the cacophony in her head? Is she trying not to get distracted by animals and people that surround her and her teacher but her teacher can’t see?

 

Respond to other kids?

 

“Hey, Jani!”

 

Sometimes she doesn’t even turn around. She is so focused on where she is going that I am not sure she sees them.

 

In those moments, out on my balcony, watching one kid shout “Hey, Ian!” and seeing Ian turn and yell back, “What?” I get reminded of what Jani may never be able to do. What is an afterthought for those kids is a major effort for Jani.

 

Jani may never be homeless. She may never wind up in jail. As long as I am alive I will ensure those things don’t happen.

 

I still get idiots who post, either here or on the Jani Foundation YouTube Channel, “Why did you have another child if you knew something was wrong?” They feel bad for Bodhi. Understandable. For a year and a half, until we got the two apartments, it seemed like we had brought him into hell.

 

At the time, my answer was that Jani was becoming increasingly isolated. She refused to interact with other kids. We thought it was just her genius. But she didn’t connect with the genius kids either. She was obsessed with Calalini, not computers. Jani was an “eccentric” genius. She couldn’t connect with other kids.

 

So I decided to try and make one for her.

 

My answer after Bodhi was born and the violence…. My answer was “We would do the same for Bodhi if it was him instead of Jani.” We would no more abandon her than we would abandon him.

 

My answer now?

 

Because I love him.

Because Jani loves him.

And because he and Jani will have each other after Susan and I are dead and gone, asshole.

 

So take your victim complex because you feel you got shorted by a special needs sibling and get the fuck over yourself.

 

Yeah, I don’t tell you want to want to hear. I tell you what you have to hear. That’s probably why I haven’t been invited back to speak before the California Hospital Association. That’s probably why I never get invited to speak at fancy celebratory parties thrown by non-profits who raise thousands and millions (NAMI) to fight “stigma.” I am not going to go and pat you on the back and tell you what a great advocacy job you are going over your poached salmon. Because there is no one in the fucking ballroom or restaurant that needs you help. You want to be an advocate? Come with me to houses and apartments all across this country, from Los Angeles to Baltimore, from small towns in Texas to small towns in Montana. From Florida to Maine. From Fort Bragg, North Carolina to Choctaw, Oklahoma. From the suburbs of Los Angeles to the suburbs of Cleveland.

 

Come with me and see the kids who lash out violently at their parents out of nowhere. Come with me and see kids who try to strangle their younger siblings. Come with me and see parents at the end of their rope. Come with me and see parents wracked with guilt over sending their child to residential because they had to work, they couldn’t afford two apartments, they couldn’t keep their child or children with for the price of one of your events so you can all pat yourselves on the back about how much you care.

No, you don’t. If you care, you go provide respite. If you care, you man the phones when someone is in crisis. If you care, you do what those of us who live it do and get out of your life and into someone else’s.

 

Otherwise, you are not an advocate. You just like the parties and the free food and pretending you make a difference.

 

You are, in a word, a “fader,” my term for people who have come into our lives just to leave it just as quickly when things get a bit too “real.”

 

Over the summer, this blog will be going on the road, a “virtual tour” if you will, leading up to the publish date of January First on August 7th. I am going to show you the faces of severe childhood mental illness. I am also going to show what happens when they grow up. Every week, starting soon, I will introduce a new child, a new family, and share their story (even if I have to change the names and other identifying features). I will show how they are similar to Jani, both in terms of her illness and her humanity, and how they are different.

 

Above all, I want to show you that Jani is far from unique. She is just the one who got the media attention. If you love Jani, you need to love these kids, too. Because all of them have parents working very hard to change their futures.

 

And they need your help.

 

So if you are finished with your salmon, it’s time to go. Bring your checkbook. You want to make a difference? Come with me.

 

It’s time to stop talking about “change.”

 

Because talk don’t change a thing.

 

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47 comments on “Fader

  1. Amen! This is so the truth. Except that WE are no longer alone. Thanks to your family, we now know others just like ourselves. And honestly, that is far more support then I have ever received from “the system”.

    Note from Michael: Ditto.

  2. Keep it up!
    Thank you for sharing your story. I have been following your family’s story for years and I truely admire your strength to stand up for families like mine that seem to have no voice. I come from a family full of mental illness, including my bi-polar nine year old son. All of your fears, are my fears. And all of your triumphs are my triumphs. Please keep talking and ignore the critics, they have been lucky to not know this beast.

    Note from Michael: Are you aware of our private support groups for parents with mentally ill kids? We have this Yahoo group: http://health.groups.yahoo.com/group/parental-support/ and if you are on Facebook we also have this group: https://www.facebook.com/groups/144622772289553/

  3. You often start your best post with an apology…stop that! you are an honest, real, wonderful father……who is sacrificing everything for your children…you owe NO-ONE an apology for writing that!

    Note from Michael: I wasn’t apologizing for the CONTENT of the blog. I never do that. I was apologizing for technical problems with the blog that I cannot fix.

  4. Re: Fader
    Agrees with Amelia. Jani’s road is difficult one. It shouldn’t be sugar-coated. Tell it like it is and ignore the naysayers.

  5. Reading the part about how people ask you how you could of had a second child or even a first child and I get that. Back in the fall I lashed out at my mom, I was angry and yelling at her that my problems were her fault that she never should of had children with someone who she knew had bipolar disorder. I realize I was being unfair parents don’t think about that kind of thing they know about other genetic disorders but when it comes to mental illness most parents don’t think about it. There are certain things about the mental illness that I like it allows me to think differently and is one of the things I attribute my intellect to but I live with paranoia anxiety and a roller coaster of emotions depression to mania and back to depression.

    Note from Michael: Well, I get the feelings, Samantha. I never said the feelings weren’t legitimate. It’s okay to get angry. All I am saying is that eventually, for your own sense of well-being, you have to let it go or channel it into something constructive. It is true we parents never think about the consequences of our genetics (and believe me I carry that guilt). But I also think that if I had the ability to go back in time I wouldn’t not have Jani and Bodhi. They deserve to exist, just as you do. Yes, you got some tough genetics, but everybody’s got something. You are here for a purpose, Samantha. You exist and are the way you are not because of a mistake but because the world needed you just the way you are. It may not feel like that but I have to believe we all have a purpose for existing. We are all meant to contribute to the tapestry of life.

  6. your rollarcoster
    I’ve only been reading your blog since march, but I have read all of thr posts on your old blog and most on your new. I hate it so much that just when I think that you guys are fine and can put your mind on your friends who like you have mentally ill children Jan I gets worse. I am anticipating your book but I wanna tell you what makes me mad about nami

    NA I was founded to be a support and advocacy system. (My tablet auto corrects if nami is spelled NA I I don’t have the patience to keep fixing it)

    NA I makes all these brochures and the people that see them arent the people who need them. I know a story where a mother her husband and her two younger sons were living at home. The elder of the two was an adult who was later diagnosed as a schoizophrenic. He had episodes like whatjani had before she was on meds. The sheriff even had to come to their house to calm him down. Despite this they never heard of narsda, NA I or any similar orginisations until after their son murdered his former coach because he was turning the kids into ‘fish and animals and dead people that coach shouldn’t have died NA I isn’t helping explain these disorders to people who don’t know their orginization, and they aren’t trying to prevent violence. The ciaches death could have been prevented by at least 5 different groups of individuals. Someone needs to stick up for the ill person BC in this case all of the orninizations pointed fingers at each other and the I’ll person got a life term…

    Note from Michael: Well, Jani isn’t getting “worse.” Overall, she is improving. It’s just not a steady improvement. It never is with mental illness.

    NAMI has lost touch with why it was founded. Maybe because it is essentially a corporate entity now and not the mutual support system it was when it was founded. That is what tends to happen to organizations because as they grow they hire people who don’t “get it.” They’ve never lived it directly. They are hired for their business acumen, not their personal experience with mental illness. The only time I ever hear a peep out of NAMI (or when they take a break from their endless fundraising) is when a story gets into a media of a mentally ill individual committing a violent crime. At which point all they do is remind us that most mentally ill are not violent. Which is true, but that does exactly diddly shit to help those who are. Mentally ill in America are victims, both of their illness and of a society that won’t provide the services they need to live happy, productive lives. In NAMI, I see no righteous anger. All I see are old ladies in t-shirts on NAMIWALKS, going in circles. Why doesn’t NAMI get angry? Why don’t they march on DC? Because they don’t want to offend their donors? What is the point of raising millions if it isn’t going to help the families and severely mentally ill who need it? I have taken a lot of flack for attacking NAMI but as long as families keep coming to me and Susan because they went to NAMI and NAMI literally told them “I’m sorry. There is nothing we can do” while pocketing millions I will continue to attack them.

  7. I really think Jani seems incredibly intelligent- it may sound crazy but do you think that there is a possibility that your daughter may be having images/messages ‘beamed’ or otherwise ‘telepathically’ transmitted into her mind? (I know people don’t think that kind of technology can exist, but it can)
    It is just that these ‘hallucinations’ began far earlier than any schizophrenia generally manifests itself- maybe it isn’t your ‘typical’ schizophrenia then?

    Maybe there has been a psychological attack waged on her mind since birth to drown out her profound intuitive abilities?

    Perhaps the ‘powers that be’ knew that she would have had a huge impact on our world (maybe having to do with an understanding of mathematics or the significence of certain numbers? And that is why they are corrupting her interpretations of numbers/math?)
    It is just an opinion but it comes from years of research into these matters.

    Note from Michael: Well, your theories take away from the necessary idea that schizophrenia is a biological illness and can indeed affect children. Having met many other children with schizophrenia I can tell you it’s sadly not as unique as we would like to believe. It just manifests differently in children and is often written off as behavior until it escalates.

    But the way I look at all theories of its cause is the same: It doesn’t matter what caused it. What matters is how we address the symptoms and how we try to improve the quality of life and opportunities for happiness for kids with severe mental illnesses. This is why I don’t focus on “cures.” I focus what is necessary to live with the disease.

  8. Hi Micheal,

    I have a few questions, just because I’m curious, if you don’t mind. I’m wondering, if you know, what the long term outlook is for a person with childhood onset schizophrenia? Are the issues of these kids as adults similar to those who have schizophrenia starting in adulthood or do they get better/different?
    What are your plans, if any, for Jani as she reaches her teen years and early adulthood? Can kids like Jani be kept safe in the home with the parents once they are bigger and more independent?
    My best friend during my teen years was mentally ill. I don’t know what her diagnosis was but I believe that she was bi-polar. It had been obvious even as a small child that there was something wrong with her. She only spent about a week in a regular 1st grade class before she was moved to what they called a “therapy school”. At 13 her mother couldn’t handle her anymore and she went into a group home and started on a road going from group home to foster home to institutionalization. It didn’t go well. She just got worse. She once got mad at me and started to stab herself with a pair of scissors. She was very self destructive. She eventually became a hardcore heroin addict and last time I saw her she looked horrible. Her clothes were dirty and she had hair down to her waist that looked like it had not been brushed for weeks. It was a sad sight.
    I know that both her parents had tried very hard to help her and a lot of resources had been used on her to no avail. Despite all of this she still went downhill. How do you prevent that from happening to kids with mental illness like my friend and Jani? What have you seen with families that have gone before you and now have adult kids?
    You are probably just taking a day at a time with Jani and it’s impossible to know what she will be like five years from now. I’m curious though if you have any kind of tentative plan for her when she’s 15-16 and on?

    Of course this stuff is really none of my business. It’s just something I started to think about while reading some of your blog and I thought it doesn’t hurt to ask.

    Keep up the good work! I think you and your wife are doing great.

    Note from Michael: These are serious and important questions and I want to take my time in responding. Today was a rough day but give me a day or two.

  9. Long term outlook for kids with mental illness.
    (I already posted this but it didn’t show up so I’m posting it again.)

    Hi Micheal,

    I have a few questions, just because I’m curious, if you don’t mind. I’m wondering, if you know, what the long term outlook is for a person with childhood onset schizophrenia? Are the issues of these kids as adults similar to those who have schizophrenia starting in adulthood or do they get better/different?
    What are your plans, if any, for Jani as she reaches her teen years and early adulthood? Can kids like Jani be kept safe in the home with the parents once they are bigger and more independent?
    My best friend during my teen years was mentally ill. I don’t know what her diagnosis was but I believe that she was bi-polar. It had been obvious even as a small child that there was something wrong with her. She only spent about a week in a regular 1st grade class before she was moved to what they called a “therapy school”. At 13 her mother couldn’t handle her anymore and she went into a group home and started on a road going from group home to foster home to institutionalization. It didn’t go well. She just got worse. She once got mad at me and started to stab herself with a pair of scissors. She was very self destructive. She eventually became a hardcore heroin addict and last time I saw her she looked horrible. Her clothes were dirty and she had hair down to her waist that looked like it had not been brushed for weeks. It was a sad sight.
    I know that both her parents had tried very hard to help her and a lot of resources had been used on her to no avail. Despite all of this she still went downhill. How do you prevent that from happening to kids with mental illness like my friend and Jani? What have you seen with families that have gone before you and now have adult kids?
    You are probably just taking a day at a time with Jani and it’s impossible to know what she will be like five years from now. I’m curious though if you have any kind of tentative plan for her when she’s 15-16 and on?

    Of course this stuff is really none of my business. It’s just something I started to think about while reading some of your blog and I thought it doesn’t hurt to ask.

    Keep up the good work! I think you and your wife are doing great.

    Note from Michael: No, it showed up. All comments are held in que until they are moderated and approved. I will answer your questions soon but today was one of the harder variety.

    Second note from Michael: Actually, they are such good questions I want to write a blog as my answer. Give me a few days. It will be next week sometime.

  10. You are a rock
    Today, watching Discovery I saw the story on your beautiful little girl. I had to know more so here I am. I can’t begin to tell you how wonderful it is to see a father and mother stand to fight for their childs well being. You remind me alot of my father who is my rock in my battle with mental illness. I’m 29 and had trauma in my past causing Dissaccosiative Identity Disorder (formally known as multiple personality disorder) Also psychosis, anxiety, PTSD, bi polar ext…I’ve been in and out of hospitals for years now. taking perscriptions that made me numb to the world and unable to move let alone think clearly. I am now only on a small anti depressent and low dose anxiety medicine. I hallucinate everyday, seeing animals, people, “demons”, and sometimes i faulter in knowing what is real and what is not but i have learned to live with it. My hope is that, in time, Jani may also learn because she is stil so very very young there is always that possiblity that she too will be ok like me. My father had the world to do with me being where I am today and I know she will feel the same as I do. I wish I had money to give to you, to help, but I am on disability and have barely enough to live on myself. I hope to change that soon and as soon as I do I will come your way. I will keep reading your posts and buy your book. You and your family are in my prayers

    Note from Michael: Thank you, Maria. If Jani is able to one day tell her story as you can tell yours (even this comment is a story) then I did my job.

  11. Compassion
    Yesterday I spent time with a friend of mine who has bipolar with psychotic features. She has been in and out of hospitals 6 times in 5 years, forcibly committed twice and is heavily medicated. My attitude toward her has completely changed since reading your blogs about Jani. I try to take to heart what you say about Jani’s interactions and her behavior that could be viewed as odd. I use your observations to remind myself to treat my friend with extra kindness and understanding. I wait patiently when she stares off into space or rambles without hearing me speak. But most importantly, because I give her time to get all of the thoughts out of her head I am able to hear her when she tells me about the people who make fun of her and about things that are hard for her. Things that I take for granted like meeting new people or reading a book.

    Your compassionate view of Jani’s world has helped me to be a better person and I cannot thank you enough for opening my eyes. Even if nothing changes with funding or organizations like NAMI or healthcare, at least you can say without a doubt that you are changing individual’s attitudes toward mental illness and those afflicted by it.

    Note from Michael: Thank you, Elizabeth. That means a lot to know that I helped improve your understanding of your friend, and thereby improved her quality of life. I know it is stuff but I admire you for sticking by her.

  12. [quote]Second note from Michael: Actually, they are such good questions I want to write a blog as my answer. Give me a few days. It will be next week sometime.[/quote]

    Great! I’ll check back next week.

  13. How to help
    Hi Michael,
    Why do you think people keep coming and going just because it gets a little hard? Do you think they are inadequetly trained, and could that be something that really needs to be worked on and changed? Isnt that something NAMI should or could be doing? What exactly is it that they do anyways? If I am to donate money, where do you suggest my dollars should actually go? What organizations personally have you seen the best results from? Thanks for your time. You are wonderful and commited parents. Parenting is not for the faint of heart. I can see how much you all love each other.

    Note from Michael: Good questions. I think people have good intentions. I think people involved with NAMI and other mental illness advocacy organizations have good intentions. They are not bad people and I don’t want to give that impression. Basically, it is a “double bind.” Those that live the experience of having a child with severe mental illness have no time to run a non-profit and those that have the time have no experience (generally). So the result is a disconnect between the needs of the advocacy organization and the needs of families. The organization needs “awareness” (although they don’t define very well what that is) and the families need actual concrete assistance, which if often financial. What parents and families really need is money and another set of hands and a voice. NAMI does not provide that voice or that set of hands or that money. So, from the outside, it appears like organizations like NAMI are perpetually raising money but families on the ground never see the results of that money. In the end, these organizations unintentionally just end up feeding themselves. 501c3 (which is what most non profits are) laws are also not conducive to actually providing any concrete help because tax laws dictate that funds raised have to be used on “awareness and education” (again without any strong definition of what that means). I don’t recommend donating to any organization because you have no idea where you money goes. Where it goes is to more fundraising, to the maintaining the lifecylcle of the non-profit. If you want to donate money, I recommend going to http://www.facebook.com/janfoundation and donating directly to families with mentally ill children in need (through their Paypals). That way your money goes to relieve one burden on one specific family and you can actually see the results by talking to them.

  14. Michael,

    I have been following your blog for a long time, but have always been ‘afraid’ to comment. I don’t know why – maybe just the admission in written word that I relate to your story both from the perspective of the child AND the parent. The notes of Jani’s tactile halucination notes have pushed the button though. These are really unbearable and my heart aches for Jani, for I understand. I was that child many years ago … spending my days and nights in ritual and hiding in the closet with the door shut, just knowing that if I opened it I would find myself alone in the vacuum of space with just the unpleasant visitors to hold on to. Looks so trivial when you read it. Plus I feel the obligation for brievity and restraint in comment. I am still that child, just in a bigger body. LOL.

    My message to you is one of hope though. I did not have the support that you have given Jani. I know that the mental health system is so flawed, I have experienced this first hand as well. I know the feeling of needing a name for what is going on – and the resulting despair when you learn that there is no ‘cure’. With your effort though, there is so much more hope for Jani than just presented on the numeric scale. You and Susan are head and shoulders above the gen pop. Please, please don’t doubt this – and know that others feel that love and caring as well, for while fighting for Jani you are really fighting for each and every one of us. I can not offer what you need the most though – just my time.

    I know that this comment is a bit rambling, perhaps I’ll try email later, but I want to share my success despite crappy chances as well. I have an advanced degree … which I earned while fighing every step of the way, through many hospital visits and meds … I hold a job in said field … but have had to take leave for hospitalizations and ‘tough times’, often shut the door when I just CAN NOT take any more … I am married and have a beautiful child … the process of which introduced me to criticism, ridicule, and personal anguish beyond what I could have ever imagined … and I now work with that child on their own issues … supplying me with endless guilt.

    Michael, when you read this though, I think you’ll understand that I am successful. To the outside world, maybe not so much – but still. Every. Single. Day. is a non-stop battle. A war. And it will be the same for Jani. It’s not going away and you know that. She is briilliant. She is resilient. She has you. She will be successful – but by her own measure.

    Take heart and know that there are so many more folks that admire and ‘cheer you on’ than you’ll ever know. Every person’s struggle is different – but there is hope.

    Liz

    Note from Michael: Liz, you are indeed VERY successful. YOU ARE ALIVE AND FUNCTIONAL (even if there are, and always will be, bad days). That is a huge accomplishment. You give me so much hope. Thank you.

  15. Your Opinion,
    Hello,
    My name is Laura. When I attend college I would like do some field of work that deals with children like your daughter. I’ve read quite a bit on her and other children with a disorder like what Jani goes through, as well as some that have different cases all together.
    You’ve undoubtedly came across several different types of doctors, of names and specialties im probably completely unaware of. In your honest opinion, what type of doctor or specialist helped the most? I want to be productive. Actually helping the children personally. Do you have any recommendations as to what I should look into?

    Note from Michael: Hi Laure, I think it depends less on the particular field than the commitment to staying with these kids through thick and thin and being understanding that kids in crisis can’t wait for weekdays 9-5 and that “Call 911” doesn’t work if there are no beds available in the psych ward. I can tell you there is a severe shortage of child psychiatrists so that is probably the area of biggest need. After that I would say the biggest need is for therapists who will get out of the office and not expect a child to sit in an office and “talk.” Therapy for kids with psychosis is radically different and most therapists never get that training.

  16. Brave, Amazing Parenting- Major Kudos, love and respect from mental disorder survivor
    Michael & Josie,

    I am SO impressed and inspired from your tv series that I am watching now live on psych week. I was recently diagnosed with late onset bipolar disorder and can totally sympathize with your courage and strength to love your daughter and try to provide her a loving home even in the most challenging of times. I am so so so impressed by your love and courage to broadcast Jani’s struggles as it helps educate the public on mental health disorders and how they are common, yet manageable. You two are so brave and I am the person I am, in recovery and stronger than ever because of my very own loving and strong parents who did what was best for me and have been there for me through thick and thin during my struggles upon being diagnosed. Stay strong- you make it SO clear that your daughter is worth it and there is no challenge too big to permanently disrupt your family. I will pray for the both of you, and your children that you stay resilient and most importantly loving in this trying time. I surely hope the medications will eventually start stabilizing Jani as it has done for me and many others. There IS light at the end of the tunnel. Your strength and courage is truly inspiring. I can’t say it enough.

    Note from Michael: Thank you, Lori. Actually, Jani is pretty stable thanks to the medications. She has come a long way. If you are on Facebook we have a completely private support group for adults with mental illness if you are interested: https://www.facebook.com/groups/140248069431111/

  17. Michael,

    Another message/comment – intended for you, not necessarily posting. I alluded to the similarities between some of your family and my experiences … though my view of is limited to your writings, I feel an understanding of what you are going through from many angles. Fortunately for me I never posed any threat, of viojence or otherwise, to others – only to myself – and I think this has given me an ‘edge’. Well, as much as is possible! I am not labeled as schizophrenic, please note, I dont want to mislead. Combining multiple diagnoses with a healthy handful of psychosis thrown in there will get you on the same train experientially. The lines can be very blurred in these areas, and it seems that every shrink wants to put their own label on you, to leave their ‘mark’. I’m pretty well marked by this point.

    To get by, I have had to learn a LOT of tricks to make situations more tolerable. I have people who act as my ‘reality checks’ but I have to trust them completely and know that if X is just me being paranoid then yep, it sure is. It sounds like Jani ‘gets’ this on some level and understands that she has an illness. Sure as hell doesnt make the experience or anything tangibly different right NOW … but it may in the future. Can you see what I mean? I want to note the tactile hallucinations though. I am NOT a doctor, so take this with a grain of salt. I know the diarrhea feeling of which you speak. I saw your note on this and my heart fell for her – of any ‘sensation’ this sucks so much. Creepy crawlies dont make that much of a mess, etc. etc. Not being able to make the actual FEELING from my head go away, I tried to tackle it by masking it. Ever sit in a car with heated seats? Kinda feels like you peed your pants? I found that using a seat warmer offered me a little distraction from the feeling. Itchy creepies on your arm… ice cubes rubbed there. Sounds silly I know. But the only thing one can do sometimes is divert just a little attention. You probably already do things like this – or are maybe not supposed to for her – but even just a little relief can go a long way. I have a score of these little band aids.

    I could keep writing, but will stop. As she grows the illness wont go away, but it is possible for her to grow INTO it. Fill the cracks creatively and manage to move more smoothly between her ‘locations’. It can happen. Maybe not forever, I know the day will come when Ill be knocked down and just cant make it back up again, but the more I learn to work ‘my system’ the better off I am. I mourn for all that Ill never be able to do in my life. That’s part of the reality of brilliance, and she may feel that too, but I celebrate all that I have done. Not all that ‘in the face of adversity’ crap, but the fact that I can love and help people and not fall victim to myself. If you folks ever need a chat, feel free to email. You are always in my thoughts and prayers.

    Liz

    Note from Michael: Thank you, Liz. That gives me a lot of hope.

  18. great progress!
    i’m so happy to watch discovery’s latest update show to see how your daughter responds so well to the mental health expert/OT. So glad you guys could take a date night…YEAH! Love that you are reaching out with other families of children with schizophrenia. This is what I was hoping for your daughter. As a special educator, I see what kids with mental illess/emotional disturbance are up against and although my caseload is mostly kids with learning disabilities only, I was always curious to see what schooling was available for Jani. Great that she is writing sentences and is staying mindful in the present moment. Enjoy the cooking!!! LOVE IT!!!! I pray for Jani and your son!

    Note from Michael: Thank you. School is definitely a challenge because there is no special ed program specific to kids who suffer from any sort of psychosis. SED (Severely Emotionally Disturbed) ends up being a catch-all for any student with behavioral problems and most are behavior modification based, which doesn’t work for acute psychosis. We have been lucky that our school district (after many years of fighting) has come up with a totally unique program for Jani but most kids with psychosis are still struggling because the vast majority of special ed teachers have no training in dealing with psychosis, something that we hope to change.

  19. I watched the Jani’s Next chapter thing.
    Hey Michael! I heard that Jani likes Travis Barker and OMG I just about flipped when I heard that! OMG! I LOVE BLINK182!!! Does she like My Chemical Romance? Or Greenday? OMG! I can’t believe she is doing so good… But I have a question… What do they dp exactly to “Reset” her in the hospital. You said in the “Jani’s Next Chapter” thing that when she goes to the hospital, she gets “Reset”. How do they reset her? What do they do?

    Note from Michael: Jani has to constantly work to strike a functional balance between our world and her world, and unfortunately, as much as we try to minimize the conflict, the two worlds do conflict with each other. When Jani is in UCLA, she gets a break from the normal every day stressors of our world, hence a “reset.” It’s basically a break from the stress of reality for a while.

    Thanks!

    -Teenager

  20. Non-Profit’s
    Thank God that there are some of those organizations who are collecting money and some of it trickles down to those who really do need help.

    I have a bi-polar son who I love dearly. Not sure I could handle the intimate “long term” contact with anyone else’s child or family member suffering like Jani.. In fact I know I couldn’t. What I can do is try and make a difference by raising money through Rotary or other organizations that will hopefully trickle some of the money down to people like you, me, others in need.

    These non-profits don’t do it the way that I would. But they are doing it. When my son tried to commit suicide (2X) thankfully there was someone there who was willing to help.

    Most people want to help and make a difference, I think that we just have to appreciate their efforts, any efforts to alleviate the suffering of others and say “maybe that isn’t my way of doing things but God Bless them for doing what they are willing to do”..

    Right now you are angry, I know, I have been there too. I hope and pray that in time you and your family (all of them) will find peace and be able to enjoy life fully. I love the saying “hope springs eternal”. Here’s to hope!:)

    Note from Michael: I appreciate your position, but hoping is no good without action. It is sad that hope is often all these families have. Notice it was an INDIVIDUAL who helped you. Yes, that individual might have been part of a larger organization but any help that comes from any non-profit depends on the individuals within it and their commitment. Hoping that money trickles down to families who need it is not good enough. I can tell you that it doesn’t. It’s interesting that these non-profit “benefits” (the event itself) never actually “benefits” those who it is supposed to benefit. So the result is it just becomes a party for people to feel like they are doing something while avoiding the “intimate contact” that you refer to. And that is why every time we appear on TV, we get besieged by families looking for help. The non-profits who have the money have done nothing to help them so they come to us, and we are just another family. But we are not afraid of the “intimate contact,” even if that is all we can offer. We don’t say “Let’s be grateful for what these other organizations like NAMI do.” They do squat. I am not going to give them a free pass as long as Susan and I keep getting desperate families coming to us because the non-profits have told them they can’t help them. Not good enough. TRY!

  21. Thank you Michael
    Thank you, I think I’ve decided to take Psychiatry and Behavioral Neuroscience. I would really like to help make services more available, but in order to do that I would need to be close to them or work close to them. My parents said being available is good and all, but it’s difficult to get to the children if they are wide spread through out different states. My argument was somewhere along the lines of working near one of the hospitals of psych wards so that is easier for people to know about me.[I don’t know if this is true, however I was just trying to defend my case.] If all goes as planned though I’ll do my best to be available when the kids need me. I assume there are psychiatrists who have figured out how to manage this, I just don’t know who I would talk to to figure it out. If this does become too difficult, my second plan is the chemistry side of the equation. To work on newer medications for kids.

    Note from Michael: Laura, there is a huge shortage of child psychiatrists everywhere so no matter where you are you will be needed, I can assure you.

  22. Inspiraration
    Michael
    I watched jani’s stpry last night and was so inspired by her , your son, your wife and you. My 9 year old son is autistic and I was diagnosed myself with bi-polar disorder a few years ago. I have spent a good portion of his life feeling sorry for myself, thinking of all those things I wouldn’t get to do as a parent. I just don’t feel sometimes that I am strong enough to fight his disability and the world that doesn’t quiet understand it. We have gone through so much to try to help him and its been very tough not to find that “magic pill”
    After watching your struggles and your resilience and your love, I feel enlightened and hopeful. I know there will be some bad days but I know I can be strong for my baby boy
    Thank you , thank you , thank you for sharing your story! It touched me so deeply. Please keep us posted , best wishes!

    neiza

    Note from Michael: Neiza, we all have those feelings that we are not strong enough. If you feel like you ARE strong enough then something is wrong with you. As long as you stay, you are being plenty strong enough. If you check out the resources tab on this website you can find links to several private online support groups. I recommend it as a way to not feel so alone and to see that what you feel is exactly what other parents feel as well.

  23. First thing I want to say is that I think it is beautiful that you and Susan have stayed together through this. You just don’t see marriges like that these days and that is a wonderful gift for your children.

    Secondly, I love your blog and how you write, you tell em! I myself struggle with mental illness, no where near the struggle Jani has, but I also had a older sister growing up who suffered severe multiple personality disorder (now dissosociative disorder.) We thought she would spend her life in the state hospital but she is now recovered, married, and has a job. I know schizophrenia can’t be cured, but just hold onto hope that she may lead a fairly normal life. You two already do such a wonderful job.

    Also, i would love to help out families in the way you are talking. I think those fancy dinners are nothing but a waste too. How might i start something in my own community?

    Note from Michael: Come to http://www.facebook.com/janifoundation. I am sure where-ever you live, I can find a family that needs help and put you in touch. Also we have links to a private adult support group where you can both get and give support. We have an overnight emergency phone system from 10pm to 2am EST if people are in crisis and need someone to talk to and we are always needing more volunteers. So come over to our facebook page and let us and others get to know you. There is plenty you can do to help. Thanks.

  24. Is Jani ok?!
    It’s “Psych week” On Discovery fit/health it began Sunday night. What was on? A Story about Jani. a two parter. I can’t remember the exact titles but all I know is Just as You Jani’s Daddy (feels funny calling you by name as I do not know you) Were saying that Jani had to go back into the hospital and they showed Jani in the car yelling for you (or her mom?) the power went out. When it finally came on the show was long over.

    I have to know.

    Is Jani alright? Wherever she is is she alright? Please don’t misunderstand by “alright” I don’t mean “all better” I mean is she O.K.? Is she alive? Did you get her to the hospital in time ? Did she come home?

    Please tell me she’s alright. I know it seems it’s none of my “beeswax” I’m just a random person that saw a tv show about Jani and a power outage kept me from finding out what could be a “no duh” (for lack of a better phrase) answer.

    She’s in my prayers.

    Is she alright?

    I’ll understand if you don’t answer because who am I?

    but I hope that you will.

    Jani you your wife and little Bodhi are in my prayers.

    Note from Michael: “Janis’ Daddy” works as well as a title for me because that’s who I am. Yes, Jani is alright. She was only back in the hospital for a few days and then came back home. It was a short visit, shorter than her previous stays. Her hospitalizations are getting shorter and further apart. She is doing okay. As I write this, she is sleeping in her room. Thanks for asking.

  25. Bi-Polar/Kids w/Issues
    My name is Carolyn Boughton and although I was diagnosed with Stressed Induced Bi-Polar as an adult, I can relate to what you are going through with Jani. You are awesome parents. I too have a daughter who was diagnosed with PDD/OCD and may either have Williams Syndrome or Dubowitz, she also has Microcephaly. My son is on the opposite end of the spectrum (Gifted). I am afraid that my daughter may possibly also have some bi-polar, but do not want to hear that diagnosis. She is a joy with or without disabilities and am willing to face the future. I commend you for all the work you have done with your daughter as a SPED teacher and a parent. I understand what you are going through.

    Note from Michael: Hi Carolyn. I actually know another parent with a child with Williams and would be happy to put you in touch. We also have a private online support group (two actually, one in Yahoo and the other is a facebook group). You can find the links on the “resources” tab on this website or by coming over to http://www.facebook.com/janifoundation.

  26. Hi Michael, I just stumbled on your blog today and felt compelled to write. Your love you have for Jani is amazing and I commend you for all you do to keep your children safe. I too was diagnosed with childhood schizophrenia; I was 8 years old but had been showing symtoms for a number of years before my diagnosis. I was on some of the same medications as Jani. When my little brother was born I talked about killing him. I had to have around the clock supervision as did my brother to ensure both of our saftey. Although my illness was never to the degree Jani’s is, I feel I can on some level relate to her. The doctors have no understanding of how this happened, but I have been symtom free from schizophrenia for about 8 years now, and medication free for about 4 years. My family and doctors never thought it would be possible, there is no medical explanation for this. I had all the symtoms of phycosis, the hullucinations, inability to seperate reality, the violence, inability to funtion normally. Even though Jani has a mental illness, she still may be able to continue to progress and have a happy adult life where she can function in society. I am proof it is possible. (I am now 30 years old and have a college degree and work full time in my field which is with people with developmental disabilities) Anyways, I am starting to ramble (it’s 1:00am) but I wanted to write and say that I admire everything you are doing for your family. The best choices are not always the easiest ones, and I think you have shown that by doing all you can to keep Jani out of residential institutions and home. It is not easy, but in the long run it is best for Jani. I personally do not believe in institutions and have seen the negative long term effects it has had on the individuals I work with. Thank you for being an advocate for childhood schizophrenia and trying to lesson societies stigma towards mental illness. God bless you and your family.

    Note from Michael: Wow. I have heard of complete recovery cases but they are rare. You are living proof that it is worth it for those suffering from schizophrenia to keep fighting through it. If you are on Facebook and would be willing to share your story, I am sure families at http://www.facebook.com/janifoundation would love to hear it. It would give them hope. As for not sending Jani to residential, that wasn’t hard. It would have been hard to send her. I know our solution of the two apartments is not something everyone can do. We were lucky. But I never could have sent her away. It would have killed me.

  27. How to Educate My Parent About My Mental Illnesses
    Hi, Michael. I have been diagnosed with Bipolar Disorder with Psychotic Feature, OCD, Panic Disorder, PTSD and OCD. I am only 20 years old too. As a side note, my diagnosis of Bipolar with Psychotic features may be changed to Schizoaffective Disorder. Anyways, since I have been seeing a psychiatrist since I was 17, my mom has not even bother to read up on my disorders. This has led to poor means of communication with her because she does not understand my illnesses and does not know how to deasl with me. I am so glad that you are so supportive of Jani. I only wish I had that with my mom. I am asking you on how to have my mom read up on my diagnoses in order to better communicate and help me through rough times. I have given her a very informative book a few years ago about Bipolar Disorder. he has not even bothered to read it at all. I believe that part of this is due to the fact that she just does not want to believe that her daughter is very sick and has deteriorate rapidly over the years. How can I have my mom be more receptive to learning about my disorders and medications? When I try to talk to her about my state of mind, she fails to acknowledge it and acts as if it is nothing, especially when I try to explain that I have bots of psychosis that led to me severely hurting myself, with one incident leading me to cut an artery in my leg. I am just frustrated with her ignorance which has led to us growing further apart. I just want some advice on how to deal with this problem. I love how you are able to help Jani as much as possible and have the education to understand the course of her illness that leads to a better environment for her to live in.

    Note from Michael: Well, if she is not willing to make an attempt to understand, there may not be anything you can. I have learned you can’t control other people. I would suggest trying to find a support system. If you are Facebook I recommend this one. It is totally private and secure and filled with wonderful people just like yourself: https://www.facebook.com/groups/140248069431111/

  28. Prayers & Hope
    I’m sending you my prayers. I hope that Jani is improving and is better. I know that Jani has many “friends” in her life…but I would ask that you introduce her to “Jesus”. He can be a source of comfort to protect her in a world that chooses to try and take her mind. Let her know that he can be a defender. This is not about being Spiritual…it’s about giving Jani a tool that can and should go after the bad guys in her mind. Let her know that he wants to help her and will…that she must SEE him as her guardian to put all of her “friends” at bay. I’ve worked with children as a teacher with similar issues…getting to their pysche is critical and requires as you know, every possible positive angle to help them have a clear visual. Show her a picture of Christ what he represents..let her know that he will take her by the hand and rid her of some of those “friends”. Your daughter is very special…she is telling us what I believe is a possibility for many of us who are not living right. They are going to meet the very images that she speaks of. Also, I want you to know, your daughter’s mind will be made right and whole. Your daughter is a messenger on a level that most cannot understand, but for some of us, we know her calling. She is a saint…a child at the mercy of the worst enemy. That is “Sainthood”. This is not just a medical matter..We/I pray for your hearts to grow stronger to the end. And when life is all said and done for us…your daughter’s beautiful mind will be Restored and more profound than what any of us will be able to accomplish. But please…if you have not done so..Introduce her to Jesus Christ…let her friends know who he is and the power that he has. Forgive me, if I have trespassed against your faith or beliefs…I just feel strongly that she should have a defender inside of her mind more profound to weild a sword against those images.

  29. Judge not.
    I first became aware of Jani just this week, through the documentary on Discovery. Since then, I have visited your blog, watched the Oprah interview, etc. It is safe to say, that Jani has “grabbed” me. There is a quality to Jani; a quality that I can not describe, that reaches in and draws you to her.
    One thing that has struck me is how many armchair diagnosticians reside on the internet. Not only do they believe they know more than a team of psychiatrists at UCLA regarding Jani’s diagnosis, but they have also taken it upon themselves to psychoanalyse you and your wife and expose your “true motives.”
    All I can say is that until I walk in another person’s shoes, I will be slow to judge.
    I appreciate your tenacity regarding your children, and your willingness to think outside the box.
    Our medical system is broken, and it is particulary broken where mental health is concerned.
    Thank you for bringing some awareness to the general public re: childhood onset mental illness. You are performing a public service.
    I look forward to reading “January First,” and I wish you and your family peace and progress in the future.

  30. Just a lil FAITH
    You have a absolute beautiful little girl. That’s wants to freed. He cry her tears and out burts saying this isn’t me. God is sitting there waiting patiently. Have anyone every suggested that she is demonic influenced to hurt herself and others. She can be delivered and your son because I’m a witness. Been there went through it. I would suggest to find a minister.

  31. Thank You
    I watched your story tonight on Discovery Health. I wish more stories like this would reach the public. I worked in the prison system in KY. If people only knew how many individuals are in prison due to a mental illness. A big problem is getting these individuals thier medications and keeping them on the meds. Its really sad. I admire the courage and determination you both display. I have a stepson with bipolar and psychosis. At age Six I knew there was something more going on than ADHD. The doctor told us that he was bipolar and also was having auditory hallucinations. They didnt name it in his case until age ten. He will tell you he has to take his meds or the voices come back. He now lives with other relatives due to becoming violent. We have two girls at home and when he reached adolescence he became violent towards all of us. It doesnt change the love I have for him. We just had to make a decision. It was either his mother’s family or the hospital. So, far it is working for him. I pray it contiues to be a good place for him. I worry others will take advantage of him and lead him into trouble. Its a whole new ballgame as he gets closer to being 18. Thank you for sharing your story with the world.

  32. Thank you
    I don’t often read blogs or post notes to folks I don’t know online, but I wanted to let you know that I saw Jani’s story tonight and I admire the strength that you and your wife have in caring for both of your children.
    I can’t say how many times a day I thank the powers that be that I have been blessed with two amazing children and the biggest frustration they throw my way is making me chase them to get their shoes on for school when I am late for work, but after watching your story tonight, I held them a little tighter and watched them a bit longer while they drifted off to sleep.
    I see many folks who have posted have stories of mental illness. I too have had my bouts with depression and anxiety since I was a child and have been hospitalized with 2 nervous breakdowns in my 35 years. I see some of the same anxities in my 6 year old daughter and I worry that she will have some of the same feelings that I had growing up, but I can’t even imagine how miniscule my worries are to yours and those of families like yours.
    I mention my own experience and those of the folks who have posted as an intersting statement on those who take notice of your story. I imagine if you have been personally touched in some deep way by mental illness, it makes a story like yours easier to watch and connect with. Those who feel disconnected from mental illness may be more likely to judge or ignore what seems like a nightmare that will never touch them. Sadly, mental illness is still so stigmatized in our world when it should be receiving equal, if not more, airtime, public education and fundraising efforts as cancer, given its prevalence.
    I don’t know what compelled me to write you, but I just wanted to say that as one parent to another, I admire what you are doing for your children and wish you all the best. I also, wanted to thank you for helping to give me a little kick of motivation to return to school and refocus on my psych background.

    Note from Michael: “Lucky” is a perspective. I feel lucky when I hear from parents who have lost their children. Thanks for sharing.

  33. I just want to say I admire how strong you and your wife seem to be..I work in Special Ed/ beahavior problems..It is not easy,however I get to go home at the end of the day.The childrem I work with are between the ages of 14-22,I love these kids and most of them are in foster care or group homes because there families just couldnt do it anymore or they were livivng in bad conditions..Anyway I just wanted to say you guys are awesome parents and your children really are lucky to have such great supportive parents..

    Note from Michael: Thank you. I wonder how many of those “bad conditions” are caused by the parents having an untreated mental illness. Remember Susan and I treat our depression/bipolar. We are on medication ourselves so we can be as stable as possible. Of course, you have to have access to mental health care as well as the willingness to know you need help.

  34. I had previously watched Jani’s story and was amazed, so when the follow up came on of course I had to watch! I think you and Susan are amazing parents to these kids! A lot of parents are forced to “give up” and put their child in residential and the fact that you guys are doing everything you are doing is wonderful to me! It obviously has made a difference. I will be following you guys definitely to I can keep up with where both Jani and Bodhi are in life, and you parents too! Since I am in school to be a School Counselor, these stories are very interesting to me, and I think it’s great that you guys have reached out to other families and formed your own giant group!

  35. Thank you!
    Thank you for this very well written blog! I have watched Jani’s story from the beginning and have cried each time I watched it. I can’t imagine what it is like but I want you to know that there are a lot of people who do care about you guys, think about you guys and admire you and your wife’s ability to deal with and handle everything that goes on. You both amaze me. I will keep praying for a “cure” but in the meantime, please know that there are a lot of us out here praying for you and thinking about you.

  36. amazing
    Michael,
    I have watched your family story unfold on different programs. I have watched, both horrified and in awe. Tonight is the first time to spend time with your writing and here I am….crying, attempting to relay the mess of thoughts that are struggling to get from my brain to my fingers.

    I remember yelling at my mother, disabled herself and ruined from the pain of watching her son spiralling out of control…”SCHIZOPHRENIA!” Fuck. Fuck!!! He’s not a free spirit?! He’s not a wandering genius, misunderstood, an old fucking soul? Schizophrenia. Drop an F-bomb, say the word. A sophomoric dramatization, but you get the picture, I’m sure.

    Thank you for being the man that doesn’t get invited to speak at poached salmon dinners. Thank you for saying, so brilliantly, what we have all thought. Please continue to say fuck. Continue to demand that people to be honest, say the words. How can we improve anything unless we deal with the real shit in the room??

    The donation Aunt and Uncle So and So made to NAMI in lieu of flowers….graciously in Lucas’ name….very nice. Very needed. Very easy. Even better would have been a phone call when I slept in front of the front door to make sure he couldn’t ‘wander off’ before a worthless doctors appointment. …Before the two ativan wore off that the ER doc so generously prescribed at discharge. (I supplemented his sleep with Tylenol PM that I tricked him into taking, hoping he would stay groggy and compliant long enough for him to agree to make it to a crisis center. The demon is obviously stronger than Tylenol PM. And me. And him.) Aunt and Uncle So and So still can’t say schizophrenia. Never have. Never will. “Bless his heart.” Fuck off.

    It’s been three and a half years since I flew to Santa Monica by myself to identify his body. He always believed he could fly. I’ll never know if he jumped….or as our dad says, ‘made a tragic miscalculation in the power of gravity and the winds aloft’.

    I can’t help yet. I don’t know how. I don’t want to turn into a check writing, conscious clear kind of person…..but I can’t do the real shit yet. But reading your message reminded me, that I can’t block it out either.

    I apologize. This isn’t supposed to be my sob story. I just want you to know that beyond the edits and all the television BS I’m sure your family had to deal with…..it worked. It’s about putting in time. I’ll get there. Hopefully others will, too.

    All my best,
    Kalie King

    Note from Michael: You are helping. You are being honest. As long as you do that your brother did not die in vain.

  37. Hello Michael, I recently saw the documentary on Jani’s story and it has inspired me to write to you. I am a student nurse with an interest in childhood mental illness, I really hope that in the very near future that more can be done to help children like Jani and their families. I was just wondering if Jani has ever drawn any pictures of Calalini?

    Note from Michael: Yes, but not anything terribly detailed. Calalini doesn’t have the same power it once did once I converted it in Jani’s mind into a real place (which happens to be Canyon Country, CA). By putting Calalini in an actual physical location, I think it helped her by allowing her organize Calalini into our existence.

  38. So proud of you
    i origianlly watched the the first special on Jani and was thrilled to see the 2nd. I grew up with a Schizophrenic/bi polar sister ( I was the younger child). I never will understand feeling of being angry about a sick sibling. I have had my anger and frustration yes, but she is my sister and i would do anything in the world for her.. I can talk crap about her but no one else better. lol

    It takes a big person to continually be there for their child no matter what. So i wanted to take a minute to say thank you for sharing your story with us. You and your family are in my prayers,though that doesn’t necessarly help you. Love is the only help there is, and you have tons of it being sent to you and you family. Bravo.

  39. Hi Michael
    Today I watched the follow up show after seeing a show about Jani a few years ago. I hope your family is having a peaceful week. I’m in awe at how your are all managing, and grateful that you are sharing your story.
    I’m a special needs teacher in a day treatment school (most of my students are Jani’s age) so all of this is very familiar to me. I also have a child with a significant mental illness. It’s a terrible club to be in.
    Putting your blog in my google reader. Have a good night.

  40. Thank you for being real
    This was the best blog I have read. It is so much easier to read than to watch the program. She breaks my heart.
    I look forward to your updates and opinions as to what society can do for real change and support.

  41. I keep a blog called “Refuge in Audacity” because I don’t like to soften my opinions or the realities of my life. I tell them like they are. You don’t soften your life for anyone’s comfort, either, and I respect that so much. Keep being audacious; sometimes it’s the only way forward, especially when the prevailing social narrative would like very much for you to be “nice”. Childhood mental illness isn’t “nice”, so I see no reason for anyone to be particularly sweet about it.

    Thank you for being yourself.

  42. You are amazing. Susan is too. I know coming from an outside source that sounds dumb and you’ve probably heard it a million times before. But I am a 20 year old mom battling schitzoaffective. I worry every single day my son sees the things I do when he stares off at nothing , talking to the empty ness like an old friend. Coming from someone that expierences schitzophrenic symptoms, you are the BEST thing for your kids. If my parents tried like you guys do, maybe I wouldn’t have ended up in those “maybe ” situations you listed. I follow your blogs, I’ve seen the shows and your right, the TV portrays you differently. You are mazing. That’s all I can think to say to you.

    Note from Michael: Madison, if you are on Facebook we have a wonderful completely private and closed group for adults suffering from MI, many who are parents like you. If you are interested please come to http://www.facebook.com/janifoundation and leave a message or you can email me at michaeljohnschofield@me.com.

  43. Following Jani’s story
    Hello Schofield family. I have followed your family’s story for some time now. As an outsider looking in, I don’t know exactly how I can help. I don’t know if this will be much comfort or help for your family, and I’m sure somebody has probably shared this aspect of health with you….but have you guys ever explored health & wellness on a biblical level? I very firmly believe American Medicine lacks in *fully* understanding the human body/mind/spirit connection when it comes to health and wellness. We’re great as a country in treating illnesses of the body…sometimes we’re really good at treating the mind….but the spirit is often – dare I say, ALWAYS – ignored. I have been studying this for a few years now and I very much believe there is some sort of connection with health that deals with our spirit. Some genetic features are passed on. Some mannerisms are passed on. Is it that far of a stretch that spiritual curses or blessings in our generations could be passed on? Not many churches out there recognize these topics….they shy away from it. The only pastor I’ve come across that attacks health in this realm head on is Pastor Henry Wright in Thomaston, Georgia (like you, I live on the west coast so I had to travel to him). Maybe he can help Jani and Bodhi? You will hear his church is a cult, that he’s a quack, etc, etc, etc. I travelled there years ago during a very desperate, dark time in my life because I needed serious help. And no – I’m no I haven’t shaved my head and I’m not passing out flowers in airports. I really am not involved in their church at all – but I do recommend it. I was there for a week and then went home. Yes, the things they taught me seemed (at the time) a bit far out there…but they were all biblical. They only use the bible to teach. I was free to leave at any time and they were truly the only people that TRULY helped me. I was freed from an area in my life where I was in bondage for 21 years….in literally 4 days. I’m a very conservative Christian and normally would never visit a church like this…..but I was so desperate. Why mainstream churches don’t discuss the things they teach there (again – all of it from the bible) I will never understand. I promise you – it was nothing weird and I would encourage you to at least visit the saving power of Jesus Christ – not just for salvation (most important reason to get to know Him!), but to bless your life in the everyday things most of us take for granted. Like the hope of being able to watch your child make a friend and hold a conversation with her in this world. It can be a reality – I believe that. The program I attended was called ‘For My Life’. Because you have a whole family situation with 2 small children, maybe call them and explain your financial situation and severity of your case with Jani’s illness – and Bodhi’s too (I read he has been diagnosed with a spectrum of Autism?)….see if you can spend some time there as a family with a very directed/personalized program. I’m sure they would accommodate. They have a heart for helping those in need. Best wishes.

  44. I just want you to know that I just finished reading your book and it was the best book I have ever read. I have followed “Janni’s” story on episodes of Oprah and Dr. Phil and she is truely a gift from God to the world. What courage a child of such a young age must have, to endure a life not in the realm of the greater populations capability of understanding. You, Susan, Janni, Bodhi & Honey will forever be in my heart and my prayers. God bless and be with you all. ♥

    Note from Michael: I agree. I admire Jani so much.