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Turn the Earth (Waiting On A Girl)

Jani is 9 years old now.  She is in the fourth grade, although she is alone except for a teacher and an aide.

 

Those words still don’t seem entirely real to me. I have a hard time wrapping my mind around the fact that Jani will turn 10 this year.

 

Part of this is because during the dark days of the spring of 2009, when Jani was six, around the time that she was diagnosed with child onset schizophrenia, I never thought we would get here. Jani was in UCLA for what ended up being four months straight. The diagnosis was not the worst part. Identifying the enemy didn’t mean as much as I had hoped because what good was knowing your enemy if none of the weapons in your arsenal did anything against it? Jani’s schizophrenia manifested as an entire army of Calalini, and every week was spent raising medications and lowering medications, abandoning medications and starting new ones. Every day was the same for me: always looking into Jani’s eyes for any sign that we were slowing the advance of that army. All of us were desperate. Jani’s violence and hallucinations were not responding to any of the medications, any of the doses that should have worked. None of the “atypicals” had any effect. Calalini seemed to be able to cut them down like a machine gun. The doctors and social worker would make vague references to Jani being “a difficult case” but never elaborated on what that meant. Strangely, we generally avoided asking about her prognosis.

 

“Prognosis” comes from Greek, and is the root of the word “prognosticate.” Literally, it means “future knowledge,” but in modern English it means a best guess at a future outcome. In medicine, it is means “likelihood of full recovery.” “Excellent” means that the patient will likely make a full recovery, returning to his/her prior state before the onset of illness. In numerical terms, it means a better than 90% chance of recovery.

 

“Recovery.” Even its name implies to “recover” what was lost, what the disease took.

 

A prognosis of “good” means a better than 70% chance.

 

“Fair” means 50%. A flip of a coin. Fair can mean more than one thing. It can mean there is a 50/50 chance of recovery. It can also mean that recovery will be less than 100%, should it happen at all.

 

“Poor” means less than 50% chance. Poor means that indications are that recovery will be less than satisfactory, if at all. Poor means that it is unlikely that the patient will ever return to a state resembling that prior to the onset of illness.

 

As weeks became months, the only medication that seemed to have any effect against Calalini was Thorazine, generally only used today as a PRN, or “pro re nata” (Latin for “As the situation calls”). When psychiatrists see signs that a medication is working, the standard response is to increase the dose.

 

The Thorazine was increased week by week. I remember I kept asking “What do we do if the Thorazine doesn’t work?” We were told to “just take one day at a time.” Don’t think about the possibility of failure. But I had no choice because nothing was working. I had to consider the possibility that nothing we did would stop the advance of Calalini.

 

Thorazine is a “nuclear option,” along with drugs like Haldol and Clozapine. I grew up when the Soviet Union still existed, but unlike those who lived through the 1950s and 60s, I never feared nuclear Armageddon.

 

Because of “MAD:” Mutually assured destruction. MAD was why I didn’t fret growing up as a kid. MAD meant that there would be no winners in an uncontained nuclear exchange. MAD meant that neither the US nor the Soviets would fire first because they knew they would be signing their own death warrants.

 

MAD was logical.

 

Schizophrenia and other mental illnesses do not follow MAD. There was no way for me to convince the denizens of Calalini that a total victory by them would mean their own destruction. A high enough dose of Thorazine will destroy them, but it would also assure Jani’s destruction.

 

We went as high as we could go. We reached 300mg. It brought her back. But at a terrible cost.  She went into dystonia, a reaction to high doses of neuroleptics where the muscles spasm. In psychiatry parlance, they call it “EPS” or “extra-pyramidal symptoms.” I visited Jani on the night it happened. She was lying in the arms of a nurse, screaming that she couldn’t swallow. And she was sane, present, whatever you want to call it. And she was terrified.

 

Because fear is logical.

 

Watching her suffer like that was worse than watching Calalini take her. At least she wasn’t scared of that.

 

So we blinked, like Kennedy and Krushchev during the Cuban Missile Crisis. We decided we would not allow her to be destroyed by our hand, just to win the war. I surrendered to what I thought in April 2009 was the inevitable. It was just a matter of time. Susan and refused to send her to out of state residential facilities, the only offer from the Department of Mental Health, because to me that felt like abandoning the battlefield. I decided that she would stay with us. I felt it would be like San Jacinto or the Alamo: I would hold the line until I was overrun. I would rather die on the battlefield than retreat.

 

This was not motivated by any sense of nobility. She was my daughter. If she was going to go down, I was going to go down with her. I wanted to send Susan and Bodhi away and stay behind to hold the line for as long as a I could.

 

An interesting thing can happen if you keep fighting, even when you are convinced you are going to lose. The environment around you can change.

 

What ultimately saved Jani was something I never would have considered. It was Susan’s idea. Trade in our two bedroom apartment on two one bedrooms: one for Jani and one for Bodhi.

 

This changed the nature of the war by allowing us to “evacuate” Bodhi to safety. With Bodhi no longer under constant threat, we could continue the fight. When Jani left UCLA in June of 2009, when she came home, she came home to her own home, away from Bodhi. If she became violent, there was no risk to him.

 

The two apartments bought us time to continue the fight. And those who financially supported us while we did that, I believe, saved Jani’s life.

 

But there was still no future. Janis prognosis was “fair.” She had a fifty percent change of getting better and a fifty percent change of getting worse. My focus was just on getting everybody to the end of each day intact. I never allowed myself to consider the future. You can’t when you don’t know if your child will make it out alive.

 

Except she did.

 

Without the stress of living with Bodhi, the violence began to abate. The more stress we removed, the better it got. Jani started Clozaril, which also helped turn the tide. We started going to the animal shelter to help out, as well as equine therapy. We finally got a school program that worked for Jani, keeping her stress level down.

 

Slowly, we fought Calalini back to a stalemate. Our resources were running low every month but so were Calalini’s. Without the stress, they lacked the firepower to take her. We achieved an uneasy peace with 400 and Calalini.

 

Maybe it would have helped if I’d had some closure to the war for Jani’s mind. There was no official signing of an armistice. There were no agreed to terms of a truce. I never woke up one morning and realized the war was over.

 

Because it never really is. Since then it has been like standing on the border between North Korea and South Korea. I spent every moment on top of a wall, watching the demilitarized zone, watching for any sign that Calalini was coming back across the border.

 

Other than a few potshots, they haven’t so far.

 

I wonder if the reason returning veterans have such a hard time adapting to civilian life again is because suddenly you have a future and you don’t know what to do with it. In combat, you can’t think about the future. You can’t think about the future when you or someone you love might die. And then suddenly life is moving again and you don’t know how to let go. You’ve gotten used to living in fear, always waiting for the other shoe to drop.

 

It’s hard to take your finger off the trigger when that trigger is what kept you going. Pull the trigger and shoot. But Calalini is gone now. This is just your daughter. You have to let go of the trigger now. You have to lower your gun. You have to flip the safety back on.

 

So part of why it is hard for me to wrap my mind around the fact that Jani is nine and in the fourth grade is I honestly wasn’t sure we would ever get here. I don’t know if parents of neurotypical kids take their growing up for granted. I sure as hell don’t.

 

I wasn’t sure we would ever be here so I never planned for peace. I never planned for our lives to go on. I never planned on Jani growing up.

 

It’s sounds horrible now but it’s true.

 

The other reason I struggle with where Jani is now is because “recovery” was not total. I don’t know if I believe it ever can be with schizophrenia or any other major mental illness. People have told me that it is possible but have never been able to prove it.

 

Jani came back, which was the only thing I wanted. But she didn’t come back the same way she went in. She did not completely return to where she was at two years old, before the onset of any of her behaviors.

 

The disease changed her.

 

But I’ve never forgotten my brilliant, funny little girl who I knew before all this. She is still brilliant and funny, but the shine is gone. It was gone nearly two years before she went into her first hospitalization. I just didn’t want to admit it. I kept thinking that if I just tried hard enough, I could bring that Jani back.

 

Of course, I failed. It was an impossible mission. The schizophrenia retreated but it scorched the earth behind it. Rebuilding will probably take the rest of Jani’s life.

 

There is a sense of loss when your child has a severe mental illness. You do lose what you had. If you stay on the battlefield, you can win a lot of your child back. But not all of them.

 

Many of Jani’s memories of the time before are gone. Whether that is the result of the disease, the medications, or a combination of the two, I don’t know. It doesn’t really matter. I was losing her. She was slipping away and I was not going to let her go. I was selfish. I needed her as much as she needed me, for reasons that to this day I still can’t quite explain.

 

I just couldn’t let go. Maybe one day I will understand why.

 

The upshot is I did what I felt I had to do to bring her back.

 

But now, sometimes, when I first see her in the morning I find it hard to believe she is who I know she is. She’s only a little over a foot shorter than me now. She weighs 76 pounds. She’s lengthened out. Her face is getting more angular as the baby fat disappears. Her hair is a little bit longer. She takes her own baths. She dresses herself. She can make some of her own meals.

 

About the only thing she doesn’t do is open her own medication bottles.

 

A few weeks ago we were sent to a pediatric endocrinologist for a check-up, because lithium can cause early onset of puberty. It isn’t, but the natural signs are already there. Susan tells me Jani has little buds on her chest, although for the life of me I can’t see it. Susan bought her her first training bras. Based on lab results, her period is probably about two years away.

 

Her psychiatrist, a few weeks ago, said “We still have awhile but as she gets into her teen years we need to talk about birth control.”

 

What?

 

Where the fuck have I been?

 

I have been with Jani all her life but now I feel like I missed out on something. Now it feels like one day she was a child and now she is almost a teenager.

 

She grew up right under my nose and I never saw it.

 

Oh, right. I’ve been standing on the wall, watching for the enemy.

 

It’s time to lower my weapon. It’s time to flip the safety back on. It’s time to pull the cartridge. It’s time to come down off the wall.

 

But I can’t quite do it. It’s all I know how to do now. It’s all I am. I am the line between Jani’s illness and her life. I don’t know how to be anything else anymore. I’ve been fighting for four years straight. I don’t remember who I was before all of this.

 

I don’t know what to do with myself anymore.

 

And it’s not like I am done. Jani has come further than I ever thought she would, but  it’s not like her schizophrenia will ever go away. Calalini will never demilitarize entirely.

 

Jani will never entirely be free.

 

I notice this most profoundly when I see other girls her age. Jani looks like them physically but that is the end of the similarities. There is a young girl in our complex who we recently ran into. I didn’t recognize her but Susan did. She went to kindergarten with Jani at Oak Hills Elementary, before Jani became “acute.” Before she was moved, first to the “Severely Emotionally Disturbed” (SED) program at another school, and then to her current system of working one on one with a teacher and an aide for two hours in the late afternoon after all the other kids have gone home, or to dance class or soccer practice or whatever they do.

 

This girl is very nice and when she is out riding her bike and we are outside too, Susan will try to get Jani to talk to her. Or if it is just me and Jani then I am the one trying to get Jani to talk. And this girl talks to Jani. And Jani talks back. This girl has cats. Jani talks to her about her cats, none of whom actually exist, at least not in this universe. I don’t bother to tell this girl that Jani’s cats are hallucinations. If the other girl believes they are real, that is a connection. And I desperately want Jani to have a connection with a girlfriend.

 

But when it comes to other topics of conversation, that is where the struggles begin. Take TV shows, for example. Jani doesn’t like any of the “tween” shows on Disney or Nickelodeon. She watches toddler shows alongside Bodhi. Even when Bodhi is not around, that is still what she wants to watch. She knows “Bob the Builder” and “Jay Jay the Jet Plane,” shows that haven’t been on in years. She finds poop jokes and bathroom humor funny (as do I-In my opinion, “Airplane” is the greatest comedy film ever made).

 

And Jani is always moving. She can’t stay still long enough to have a conversation. She will say something, dance a few feet away, rubbing her hands together furiously, and then come back and say something totally unrelated to what the girl is saying. I talk to the girl, responding to what she saying, not because I give a damn but because I am trying to model “polite conversation.” I also do this to keep the girl from riding off on her bike again and leaving Jani. But I lose either way. Because the girl ends up talking to me more than Jani. Out of the corner of my eye, I watch Jani dancing in and out of the conversation, clearly happy, rubbing her hands, and repeat the same thing she already said or try to return to conversation to the girl’s cats or her “cats.” She has no ability to move on. And the girl, who is nice, answers her, either repeating what Jani just said or giving a one sentence answer because they were talking about their cats five minutes ago.

 

And I watch Jani. She continues to come and go, but each time now she gets a little further away and doesn’t come as close when she comes back. I know what is happening and it breaks my heart. Jani is giving up on the conversation. Eventually, she drifts away and I hear her talking to one of her hallucination friends, like 24 Hours.

 

This girl is only nine, but nine is worldly now. I don’t mean it in the sense that she knows more about the world than Jani. What I mean is that she has lived in this world her whole life. She has grown up in a social system of cliques and cues and she has learned. Jani is new to this world.

 

Our world is hard enough to navigate without the added stress of late elementary and junior high social systems.

 

This girl has already learned to talk to Jani the way adults talk to her. She is a nice girl and won’t make fun of Jani. She understands Jani is “different.” But she doesn’t have the social skills to engage Jani and Jani doesn’t have the social skills to engage her. Watching them is like watching two people who speak different languages trying to communicate.

 

We know there are others like Jani out there. We have met them. So has she. And when she does it is the only time that she is truly happy. Unfortunately, they are spread across the country.

 

A few weeks ago, Jani said that she wanted to jump down from the building we were in. We were on the fifth floor. I reacted as I always do, trying to distract her. “No, you don’t want to do that. Come over here and play with me and Bodhi.”

 

She turned to me. “I do. I want to die.”

 

I looked for any sign that she was psychotic. She wasn’t. She was totally present.

 

“I….I thought you’re always telling me you want to live to one hundred,” I stammer, trying to hide my fear.

 

She looks back out the window. “I don’t. I want to die at nine.”

 

Jani has never been this articulate about wanting to die.

 

“Why?” I asked, almost crying.

 

“Because I have schizophrenia.”

 

“So what? That’s not the end of the world. A lot of people have chronic illnesses. It’s just diabetes.” I was babbling.

 

I told her doctor and she repeated, alone, the same thing to her doctor. We were concerned. We don’t want to do an anti-depressant because anti-depressants have only wound her up in the past, making her more of a danger to herself.

 

It was decided we would just watch.

 

She has said nothing about it since.

 

A week later, we were driving in the car when INXS’s “Devil Inside” came on the radio. Jani likes music so I was telling her about INXS, how they were from Australia like me, how I used to pronounce them “INKS” as a kid, how Michael Hutchence had a great voice but he’s dead now. He committed suicide by hanging himself.

 

Jani turns to me. “What did he have?”

 

I stared at her, not sure at first what she meant. It took me several seconds to realize she was asking “What did he have?” as in “What diagnosis did he have?”

 

I felt terrible. I could have kicked myself. I will admit that it is my fault Jani connects suicide to mental illness. I’ve driven home that connection out of fear, always telling her that the people who did it were not on meds. I tell her that is why it is important that she always take her meds. I am terrified that once she is an adult she will stop taking her meds and her psychosis will take over her life again and possibly end it. It’s a warning drill.

 

Except that maybe it wasn’t such a great idea.

 

“He didn’t have schizophrenia, Jani,” is all I can say.

 

I am torn. I want her to understand the importance of having to take her meds for the rest of her life but I also don’t want her associating herself with every suicide, every murder/suicide (Columbine and Virginia Tech) or every shooting by a person who is obviously mentally ill (Jared Loughner in Tucson a year ago and TJ Lane last week in Ohio). I want her to understand that these things can happen when someone is severely mentally ill and not medicated, but I don’t want her asking me (as she did when I taught her about Lincoln’s assassination by John Wilkes Booth), “What did he have?”

 

Yeah, I know some people will think I am an awful father for telling her these things. “How could you do that?”

 

Because I am still sitting up here on the wall, starting Calalini in the face across the great divide. I am still terrified of it and I want to prepare her for anything.

 

“Just take your meds and you’ll be fine,” I tell her.

 

But I realize now Jani doesn’t need me up on the wall anymore. It’s not Calalini I need to fear anymore. It’s not suicide or her shooting up a school because she is not on her meds that I need to fear.

 

It is the social isolation of her disease.

 

And I’m not helping that.

 

It’s not her world that I need to fear anymore.

 

I need to get down off the wall and help her deal with this world.

 

Jani conquered Calalini.

 

Now she has learn to live in our world.

 

Because being human is just as hard as being schizophrenic.

 

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77 comments on “Turn the Earth (Waiting On A Girl)

  1. thoughts
    I can somewhat understand what you are saying.. There are those of us (Me included here) who are Mentally Ill and do not want to kill themselves. While I have Major Depression and Anxiety, and I realize that this is quite different then schizophrenia, I wonder if there is a way to help Jani understand that not all mentally ill people want to kill themselves.. For that, I don’t know.. I realize that Jani is VERY smart.. and she may be able to grasp this

    Note from Michael: I think she can. That is why she needs other MI people around her. She craves that because she feels at home.

  2. Socially Normal?
    I think learning how to live in this world will be just as difficult of a fight…and I hate to say that. My schizophrenia began manifesting itself when I was 17. It was only the beginning signs, the prodromal stage, but it sharply impacted me. I already had Aspergers but I’d lived with that my entire life. I knew, somewhat, how to handle it. But when I started having hallucinations of people coming to kill me at night…staying in the present during the day became harder. I was afraid of my hallucinations. I was ashamed of hearing voices. I knew what schizophrenia was and I had an idea of what would happen as I got older. Too scared, I eventually stopped talking while at school. My teachers worried but couldn’t do anything. You can’t get in trouble for refusing to talk.

    After my first psychotic break, the one that got me the diagnosis…I literally dropped out of the social world. Not only did I find it extremely difficult to keep up with the conversations people tried to have with me, but I almost completely stopped talking again. Three people could connect with me: my psychiatrist (barely), my hospital therapist, and my fiance. I refused to talk to anyone else. It wasn’t a choice though, it was part of the psychosis. I was unable to comprehend conversations. Even when I began talking again, I couldn’t connect with the world. My fiance would take me to the movies and we would leave 15 minutes in because I couldn’t focus on the movie…I couldn’t comprehend the language, the plot. I couldn’t keep up. My fiance brought me dog and bird magazines. I could read even the smallest article and understand it. I was communicative, but not about anything from the present. I wasn’t in the present. I was in a haze of my medicines. I was wrapped up by schizophrenia.

    My fiance got the task of informing our friends. When we went to hang out with them, I mainly stared quietly into the distance. I’d lost the ability to connect to other people.

    Eventually, as the drugs made a bigger impact on my psychosis, I started comprehending again. But, it was like I was in a different world. I felt like I had missed a huge chunk of time and in reality, I had. I’d been in the hospital over and over. My life became a struggle to understand and cope with the schizophrenia. When the comprehension came back…schizophrenia was my focus. I could talk about it for hours but no one wanted to. I started my blog as a release for those conversations, even if I didn’t know who was listening. I delved into another life-line…training my dog to be a service dog for me. To do that, I had to connect with a dog trainer. I did that, and finally I had someone I could talk to that would listen. He wanted to know more about the schizophrenia so that we could better train my dog and discover new ways he could help me. We talked endlessly about dog behavior and dog training.

    To sum up, I had to relearn how to live in the world. These days I can watch a movie with friends, even if I don’t get fully caught up in it. I can read again, which is a blessing in itself. While my verbal communication skills are a bit different (somewhat disorganized), I am tirelessly interested in talking about my interests with others. I’ve found friends who will participate and enjoy such conversations. But that took nearly 3 years to obtain.

    I’ve learned that a big part of getting engaged in conversations outside my core interests is humor. It is used in my therapy sessions. It is used in a large part of my interactions with friends. It is one of the few ways I can jump my social boundaries and land on my feet. Being open about laughing at my limitations and differences has vastly improved my communication skills. Being silly is therapeutic to me.

    I don’t know if any of this has helped. I’m probably just rambling. But I want you to know that you have a different battle to face now. You have to teach Jani how to engage in the world and that is supremely difficult…even as the adult that I am.

    Note from Michael: Wow, Katherine. That most certainly did help. Thank you for sharing so much of your descent and rising again. What you describe is so much like Jani. It helps me to see her world from another perspective of someone who has been there.

    Incidentally, humor is my way of jumping the boundaries. It is my best connection between her world and this one.

  3. You guys are fighting so hard, but just looking at this, comparing this blog post to many others before it – I’m just so happy for you that you’ve gotten to this point, all of you. It seems so strange, to have to step into being a father from being a soldier all your life, but you and Susan are basically SuperPower Parents. Best of wishes, Michael – stay strong.

  4. Jani
    Terrifying. And sad. Had no idea Jani still contemplated suicide. Can only hope that she will get beyond such desires as she gets older.

    I’ve always thought that Jani has a sort of magical or maybe spiritual quality about her. Perhaps this will help her conquor the darker regions of her mind. Or as you say find an armistice with Calilini. I know it’s not a scientific approach but there it is.

    In any event, I hope her inner light will prevail.

  5. this is one that made me cry. because i am fighting on all 3 of those fronts right now i am trying to protect my oldest who is now adapting to our world. my middle is still battling calalini full force and my youngest has entered calalini now you keep us going you and susan and janiand bodhi you give us and many others hope that ours will survive too.

  6. I wonder if something like the Big Sisters program would help? I’m not sure if they have limitations in handling a child with a mental illness, but it could be a way to get some one-on-one interaction for Jani. Plus,she might enjoy being around someone older, they might have more ways to connect.

  7. Beginning of a New Battle
    I don’t pretend to have dealt with what you have dealt with, but I feel like there are such similarities in our lives. I have had to learn to live in the moment, because when you have such an “unusual and complex” (as the doctors love to say) situation, you just can’t predict and you can’t really make plans for the future.
    You have done a wonderful job bringing Jani back from the brink, and I think the mindset you fall into is that there is another disaster around every corner. You become hyper-vigilant and the “recovery” seems shaky, like anything at any moment could send them back into a tail spin. Adjusting to anything even resembling “normal” seems totally foreign.
    Cole has Autism and he is 9 too, so I can relate to the social issues. He can’t carry on a conversation without prompts, he often doesn’t make sense and can’t stay on topic. Like most Autistics he has a world of his own that he can retreat into. Teaching your child to relate to others, to empathize with others, and to have somewhat “normal” social interactions is a battle in itself.
    I have come to the realization that Cole will never just blend in, that all the “social skills” I teach him will not mask his Autism or his mental illness. We are working on teaching him about his conditions, we try our best to connect him with others like him so he doesn’t feel so alone. His therapist and I are teaching him how to be upfront with people about his Autism and we are preparing him as best we can for those who won’t understand.
    My heart breaks for Jani, in the same way it breaks for Cole when he looks at me and says with such sadness “I want to be normal.” Please let her know she isn’t alone, that another 9 year old kid in this world has said those same words and felt the same way.

    Note from Michael: Thank you, Bridget. I will.

  8. A New Battle
    Michael, you always impress me with your ability to put all of what you go through into words. And your blog resonates even more now that I have met you, Susan, Jani & Bodhi. You make it real for so many other people…you give people insight into your world. Many still won’t get it and still won’t understand, and some will attack you. But others will begin to understand, at least a bit, what it’s like. And that will change those people. They may respond differently to those with MI whom they encounter. They may get involved and want to effect change. My boyfriend recently started a new job. At initial training, they broke into teams and worked on building bicycles that would be donated to children with disabilities. He was very interested in the company to which the bicycles were being donated. He wanted to talk to the company’s representative and find out if they help only children with physical disabilities or if they help children with mental disabilities too. I’m not sure if he got to speak with the rep, but I do know that him bringing up the topic with me warmed my heart…to know that he cares as deeply as I do means so much to me. And that his awareness has been raised, through conversations we have had about my sister and her kids, and you and yours. If ever he and I should marry, I know that he will be a great step dad to my son and a great uncle to my nieces and nephew. And at the moment, it would seem he also wants to champion the cause when he is able.

    Reading about your crossroads moment, I only wish it could be an easier battle than what you have fought before. Sadly, I don’t think that to be true. Different, but not easier. Still, I do believe that you & Susan are capable of conquering this as well, as is Jani!

  9. A role model
    Perhaps you should find Jani an older teen or a young adult with Schizophrenia who is fairly stable and have Jani spend time with them? Kind of like the big brother big sister program so that Jani can see that people can live with schizophrenia and that even if you are mentally ill life is still worth living. Also because they would share a connection it might also help Jani get acquainted with things that are more in her age group. I’m guessing Jani likes to make up stories maybe you could get her into a library program or similar for creative writing where she can connect to kids through her stories.

    I understand her being different now I think it must be a classic symptom of mental illness. My family has commented on how I’m much different now than what I was before I got sick and I can even feel it.

    As for the tv thing there are shows which are more Jani’s age that Bodhi will like too the first one that springs to mind is Arthur (I still watch this and I’m 21). There’s even an episode about a boy with Autism (called when carl met george) so they’d be able to relate to it.

  10. Emerging into the light can be, in its own way, as hard as living in the heart of the crisis. What we endured with Carter was not as severe, and did not last as long, as what you have survived with Jani, and still, when he finally became stable (a subjective thing, obviously) a year and a half ago or so, I was profoundly disoriented. It took me a long, long time to relax (also relative, because we are always watching) and believe it was really real. That skill we have to learn, when we’re in the worst part of it, where we don’t look past the present moment, and we just tuck our heads down and survive? It’s really hard to stop doing that.

    And yes, the social isolation is painful to witness, though I don’t know how much it really bothers Carter. I’m comparing his social life to that of other kids his age, but he isn’t doing that. I see how awkward and abrasive he is, how easily he slips away, but I don’t think he’s aware. Or not aware the way other kids his age would be. We dream of normal social lives for our kids, and I guess it’s just one more aspect of their lives to grieve, and one more place to hope for progress, no matter how small.

  11. keep your head up
    I can only imagine what you are going through. On the one hand you want Jani to understand what might happen if she doesn’t take her meds but on the other hand she needs to understand that crime isn’t caused by mental illness. She needs to understand the first for the same reason everyone else does, mental illness doesn’t equal the death o someone. She need the first to understand that if she doesn’t take her medicine she might be like the cases of mentally I’ll who kill someone they love(ie Andrea Yates, mark becker there are more but I’m too tired to think of others off the top of my head). Keep your head up no matter what people say and due because someone has to protect jani from our world and hers.

    Note from Michael: Thank you.

  12. Michael have you considered the fact that you are probably suffering from PTSD. Not judging or anything, just alot of parents of MI kids end up suffering.

    Note from Michael: Probably.

  13. Butter Battle Book
    When you’re on the wall, you can’t know a person. Several years ago, my closest and oldest friend had a severe bout of Mania and was completely out of touch with the real world, the human world. She and I have a very deep, entangled relationship that occasionally turns into one caring for the other and helping to stabilize the other from our various mental and emotional dis-ease. During this one particular episode, I became so wrapped up in rescuing her, and protecting her from herself, that I could not see as she started to come back. I was on high alert the entire time, and could not see my friend, my sister, coming back. I did not know her anymore- and she did not know herself. Bringing the dogs back in and lowering your weapons is one of the hardest things to do. Getting reacquainted with those MIA may even be harder.

  14. I had childhood onset, I won’t lie, my hardest years were my teenage years but a lot of that was due to stress of an also schizophrenic boyfriend who was also a sociopath.

    I’m 23 and married now, the hardest thing I still face is having no one to relate to. But having that one person, even if they aren’t mentally ill to be there when you’re scared is what’s gotten me through. I also have my dog, I got him a few years back, before I met my partner and didn’t have a single friend in the world. Suicide was an incredibly tempting option for someone who didn’t have anyone to relate to, even other schizophrenics I decided to go to the RSPCA instead. As long as you have just one person, it seems you can make it through. I know as she grows she might want to move away from her parents being that person, but just don’t give up.

  15. I still don’t understand why are you so against residential treatment centers.

    I was suicidal at age 11 and going through many issues so my parent’s sent me to an RTC. I was very angry and yes it was hard to cope at first but it was probably the best thing they could have done for me. I was surrounded by 11 other girls all going through the same issues and the staff members (most of them) were GREAT!! I never thought I would live to be 16 and now I am 21. My RTC had all kinds of animals (we lived on a ranch) and I rode horses daily and we did Equine therapy. The people at that program became my 2nd family and I still talk to them to this day. I didn’t have siblings any siblings and I loved living with all the girls who became my sisters.

    I KNOW there are SOOO many horrible abusive RTC’s but there are also good ones out there. My parents came and visited me every other month and I could talk to them daily. I’m just saying…I know I’m not in your situation and cannot even begin to understand but there are other options and frankly, it worries me that your whole consists of Jani. you need to have your own life as well.

    I don’t intend for this to sound rude or to piss you off but I’m just saying.

    Note from Michael: First, what was the name of the RTC you attended? I want to know the name of this wonderful RTC you attended. Second, what makes you think from any of my recent blog entries that Jani needs an RTC?

    Second note from Michael: Still waiting for you to tell me what facility you were at. Until you do I have to remain suspicious about your intentions, considering you would be the first to go to a RTC and endorse it. You also provided no contact information about yourself.

  16. Thank you.
    I’ve been following Jani’s story since about 2007, but I’ve never commented before. After reading this post I decided to finally break my silence. Reading it was so bittersweet– sweet, because Jani is growing up and she’s come so far, farther than most of us could’ve hoped; and sad, because she still says she wants to die. I can honestly say as a long-time reader that I don’t think Jani would still be alive if she hadn’t had parents who were willing to fight tooth and nail, day and night, no matter what anyone said, to help their daughter. Your honesty every step of the way has revealed that you and Susan are as human as the rest of us, and as flawed, but you guys are still my heroes. Because heroes, in the real world, aren’t superhuman. You guys are heroes because you’ve been Jani’s fiercest advocates and because you wouldn’t give up on her no matter what. And now, when the focus with Jani is changing to the fact that she has to learn to live in our world, I’m very glad that she has you and Susan in her corner.

    My mother has adult-onset schizophrenia. It hit her like a sledgehammer when she was 27, just a few weeks after I was born. And I grew up terrified of and confused by this strange person who was unpredictable and violent and didn’t live in the same world I did. I never got to know my mother because she wasn’t present in the same universe that I was. I feel horrible admitting this, but I resented her for a long time. Because she scared me and she saw things I didn’t and I just wanted her to be like other moms. I ended up being raised entirely by my dad (who was an awesome parent, thankfully). My older siblings and I still go see our mom sometimes but it’s hard to tell whether her universe even really includes us. She has been on many different kinds of medication and she is no longer violent or dangerous, but her hallucinations are still much more real to her than anything else, and she only really engages with them. I’ve spent most of my life afraid that I’ll get schizophrenia, too (I still have that fear–I’m years younger than she was at the time of her onset), or that I’ll have a child with schizophrenia. All this to say that reading your blog has profoundly effected the way that I think of people with schizophrenia. Including my mom. She is never again going to be the person she was before schizophrenia. That person, who I never go to know, is gone. But her illness doesn’t make her less human, less valuable, less deserving of care and compassion. She is a person who had a life and a family and dreams, and those things were taken away from her by an invisible illness that ate her from the inside out. So thank you for your honesty. Thank you for giving us a look at your life with Jani. I’m still scared of schizophrenia, but I can say this: if it happens to me, I hope I have someone who fights for me half as hard as you and Susan have fought for Jani. And if it happens to a child of mine, well… I hope to God it doesn’t, but if it ever does, I’ll fight tooth and nail, night and day, to bring them back as much as possible.

    Note from Michael: Wow. I’m speechless (in a good way). Our mothers are very similar. The only real difference is I had no siblings. There is so much here to deal with, in terms of carrying a gene or some kind of chemical sequence. I ask myself every day if I knew what I know now would I have gone through with having kids? Yes. I don’t have the right to determine Jani’s existence or lack thereof. That wasn’t my call to make. Even if I did pass something on to her, I still think the world, and me, are a better person for her having been here.

  17. Thank you.
    I just wanted to thank you for everything you’ve said over the years. I’ve followed Jani’s story quietly, and recently, my own husband has fought his own battle with psychosis. He is not schizophrenic, but he has been diagnosed with major depression with psychosis.

    He’s currently in stabilizing inpatient care, as I type this. With luck, he will come home this week. It’s been difficult and heartbreaking, and I want you to know, Michael, that YOU are part of the reason I have been able to cope with it. Your intimate battle to join Jani in understanding her hallucinations has prepared me in a way I never dreamed I could be to understand my husband’s delusions and hallucinations, and know how to fight them. Your travails have given me some brothers-in-arms support when you didn’t realize I needed it.

    He was hospitalized the day you posted this blog. I didn’t read it until just now.

    I just want to thank you. Without me realizing it, you prepped me for this week. You gave me the tools I needed to cope with this. And yes, there are many other things there, but you helped me personally cope with the inconceivable. I know the feeling of standing guard against an army trying to destroy my spouse.

    And his very short stay has proven in many more ways than I can imagine just why you fought against residential care… his single week has been pure hell for him, and not because of the disease. The ineptitude of the staff (he has yet to be seen by a medical doctor, in spite of a documented history of seizures, kidney stones, infections, and digestive issues) and the lack of care in key places is appalling. He’s gotten the help he needed, but more from his fellow patients than the medical staff themselves. He’s only seen an actual pdoc twice, and never saw a therapist.

    I’ll be glad when he’s home; I know it’s still a long battle ahead, though the immediate crisis has passed, and I wanted to thank you again for your humanity and the skills you’ve taught me so that I am well armed to fight this war.

    And we WILL win it. We don’t face nearly the obstacles you have in Jani’s so short life (and so long!) but the tools are much the same.

    Note from Michael: Yes, you will win. Thank you for sharing. Sadly, it seems care for adults is no better than care for kids. We need to do more to value psychiatric care in our society. We have the best medical care in the world but our care for mental illness leaves much to be desired.

  18. a thought on group homes/ residental treatments
    From what I have seen (as an employee working in group homes, right now I am a fill in/per diem).. there are good ones and bad ones. That is “typical”. There is one place in Massachusetts that I worked at and REFUSE to “refer” people there.. as I think its a horrible place.
    I have worked and seen others that are good.. some in Rhode Island (where I live) and some in Massachusetts..

  19. Jani
    I just heard about Jani, you and Susan are doing the right thing as her Mom and Dad. I am an adult that grew up having the nightmare of schizophrenia from 2 yrs old I am now 39.

  20. Nobody with a decent heart should feel alone
    I’m sorry to hear that Jani feels this way at only 9 years old but I know she will make it well into adulthood. I remember sometimes feeling so depressed as a child and not wanting to be here- but my mom(who also suffers from mental illness) was there for me- not knowing I felt this way. And now as an adult, I’m here for her through her episodes of psychosis(?).

    We must be here for our mentally/emotionally ill loved ones no matter what their age. It makes me so sad to think about adults with mental illness who are distanced by family members/friends because of their condition. If only people knew how hard it is to reach out when you’re in these states and worse to feel alone and set aside. I can understand this because I feel this way (I’m in my early 30’s). Sometimes when you can’t function, you become isolated and it’s so hard to reach out.

    That is why I’m always here for my mom- I spend time with her every week and if I’m not physically there with her, I talk to her on the phone every day and I always let her know I’m here for her. I also still rely on her to comfort me when I’m feeling so low and despite her hearing voices, she’s still able to comfort me during these times and she comes through, usually knowing what to say.

    I’m so grateful to have my mom and my hubby- who’s been there for me through my tough times too. I’m here for him as well.

    Anyone reading this please reach out to those of us who are mentally/emotionally ill. Some of us have a hard time forming relationships and reaching out because of our condition. If you know someone, just a phone call to see how others are doing makes a big difference. If you have a neighbor like this, especially if they are seniors, please reach out to them- some of them feel (and sometimes are) left out by their families and they’re lonely & too tired to form new relationships.

    Everyone in these conditions matter, children, adults & seniors. Nobody with a decent heart should feel left out & alone.

  21. Does Jani or Bodhi watch Phineas and Ferb? Maybe they’d like it, it’s a show on Disney Channel. It’s animated- it’s very funny and very witty (which is something Jani might like.) If she’s interesting in moving up to regular Nickelodeon shows, Fairly Odd Parents and Spongebob Squarepants (early seasons) are cute cartoons, and then for a live-action show, Disney’s That’s So Raven is a gem. Perhaps Jani would be able to relate to it on some level, it’s about a girl who’s psychic and gets herself into a bunch of ridiculous situations- it’s always been a favourite of mine.

  22. EVERYTHING!
    It’s really hard to find some people to socialize with Jani. You have to find somebody with a lot of patience, and a little more maturity than another nine year old. Has any of your students ever asked you about Jani?.. If they are interested in her, introduce them! The student understands that Jani is a bit “odd” and jani is just socializing.

    Also Michael, Jani will never have the full socialization ability, because A) in my psychology class, we learned that you really learn most of your socialization ability when your in early elementary. and B) Jani will never fully be in our world. She will never fully be able to socialize with someone. She will always have that regression ability to go talk to twenty four hours if the conversation in this world isn’t going well. She’ll never develop that skill, because she will never pay attention to social cues long enough to learn from it. When she doesn’t know what to do, she regresses back into 24 hours.

    As for the depression thing. Michael, Jani is in recovery. She is a little nine year old girl that needs to be connected with on a emotional level. Get off the wall, and connect with her. Ask her why she feels sz is such a bad thing to where she has to kill herself. I understand it is beyond difficult to live with sz, but just try and get her perspective of it. And then talk to her about it! just have a conversation with your daughter. I feel as if you have been so used to distracting her from her psychosis that you have failed to make sure that whatever she is saying isn’t a result of her sz. You haven’t really taken what she has said as the real deal, you know what i mean? Which i am not trying to be mean or anything. You were just doing what you felt was right, but now that Jani is stable, she is another nine year old girl for the most part.

    THANX!

    -Teenager

    Note from Michael: This is pretty depressing, what you said about the things Jani will never do. I don’t really want to be reminded of that.

  23. Social skills
    I disagree with the commenter above who said Jani will never be able to socialize. It may be true that you learn most social skills in early- to mid-childhood, but that doesn’t mean you can’t catch up later. I have Asperger’s Syndrome and depression, that I’ve had all my life, that never was diagnosed never mind treated until I was an adult. I used to have terrible social skills. They’re still not that great, but when I was 16 I met my boyfriend and he taught me more than anyone or anything else about how to connect with people and maintain relationships. My socialization improved like by a factor of ten since I got to know him. If it weren’t for him I would probably have no friends, etc. What I’m saying is that you shouldn’t give up hope just because Jani is getting older and still lacking in the social skills department.

    Note from Michael: No, I’m not.

  24. The only thing worse than a first year university student saying, “Well I learned in my PSYCH 100 class that blah blah blah and therefore I am an expert” is a teenager saying, “Well I learned in my HIGH SCHOOL PSYCHOLOGY class that blah blah blah.” And following it with “thanx!” just underlines how incredibly young she is. I don’t think I need to tell you to take what she’s saying with a grain of salt Michael. But I understand that it’s still depressing to hear, I’m sorry.

    Note from Michael: She’s posted before. She doesn’t mean any harm. It was just hard to hear, that’s all. I know she didn’t mean any harm. It was unintentional.

  25. Please please PLEASE don’t focus on what you thnk Jani may not be able to do. She has proven so many people wrong already. Think back a few years ago–did anyone believe that she would be doing as well as she is? Wasn’t there a time when you doubted that you’d be able to write, “Jani turns ten this year?”
    Jani spent a lot of time trapped in the limbo between our world and hers, and unfortunately that was during a critical time in her life when certain connections need to be made. However, it wasn’t as if she was alone throughout her fight. Whether it was the nursing staff and other patients at UCLA, or you, Susan, and Bodhi, Jani has had nonstop social interaction. She has empathy. She knows right from wrong. She knows unconditional love from her little brother. And, most importantly, Jani knows loyalty from her parents.
    She’s only gotten as far as she has because you and Susan refused to listen to what the rest of the world felt was right for her, or told you what to expect from her. Jani is an incredible kid. I think as the years go by, she’s going to keep surprising and inspiring us.

    Note from Michael: I think so, too. The OP has posted before and I know she had no intention of upsetting. It’s not her fault. It was just like “wow, I hope not.” Honestly, I try not to think about her limitations. It would be too painful otherwise. Like I said I really only notice it when she is with girls her own age.

  26. I’m Sorry Michael. :'( I’m just some stupid Teenage kid! What the Hell do i know!?!?!?!? What i said may be wrong. I don’t know shit! i am not there everyday! you are! You should be able to make the judgment of what Jani Will and Won’t be able to do!

    I shoulda just kept my mouth shut.. I’m Sorry Michael.

    Note from Michael: It’s okay. Don’t beat yourself up about it. I know you from your many comments over time and I know you didn’t mean any harm by it. Don’t worry. I don’t take it personally and I’m not angry with you. You may be right. I think others were just worried I would give up although I would hope everybody would know by now that I never give up. It was just the abruptness of it. But of course there has to be consequences for having developed schizophrenia in early childhood. I guess I just never thought about it. I try not to. But don’t worry. No offense taken at all, okay?

  27. okay. And I know you from all of your blogs , that you will never give up. EVER. I shouldn’t of been so cold about it though. Thanks for being so understanding!

  28. I remember wanting to die as a child. Refusing to walk with my family anymore, sitting down on a curb and crying. Being loved helps. Those thoughts as an impulse never went away until I was 24 and talking with my psychologist. I told him I wanted them to go away and he tried to imagine the place where I would fit in perfectly as if it were real. It was a coffee shop filled with copies of Cabinet magazine. I thought about how no one really knows me. Jani is lucky that you really know her. The psychologist still sees me socially, for tea.

    If I go off my antidepressant I get suicidal, but for the most part it has been a magic bullet.

  29. I live in the UK and watched the programme regarding Jani. Firstly may I say what fantastic and dedicated parents you are. What came across to me was that Jani is a beautiful and very special little girl and with parents like you and the support of the medical profession she can live live to the full. Take care guys. Shirls

  30. Hope
    Hi, Michael. I am in recovery from Schizoaffective Disorder. I still have the disorder, but it does not have me. It started with depression when I was 14. I had my first suicide attempt when I was 15. The psychosis did not start until I was 23. I have seen a couple of TV programs on Jani and I have always thought that it must be very hard to be a child with a form of Schizophrenia. Because I know how hard psychosis is, and how terrifying. I was floridly psychotic for seven years straight. I was never violent toward anybody but myself, but I was often suicidal. It was because of command hallucinations often. I had some close calls with suicide attempts. But, when I finally got correctly diagnosed at the age of 30, I got put on medications that worked for me. It did take some trial and error, but medicztion has worked for me. I have heard it often doesn’t work as well for children as it does for adults. It’s been seven years now that I’ve been taking medication. In that time I went from being frequently unable to keep a roof over my head to living in an apartment of my own for six years. I have been working part time for six years.I got my AA degreee, graduating with honors. Yeah, I was older than I wanted to be when I did that, but I still did it. I am now at a university earning a BA in social sciences because I want to be a social worker, and help people with mental illnesses and other challenges. My illness has given me a lot of empathy. I volunteer with NAMI and do public speaking about my illness, helping to train police officers in Crisis Intervention Team Training classes and the general public. I have spoken to kids at a high school twice, and told them my story, and how to get help when you have symptoms. And most importantly, I’m happy. I don’t have a lot of friends, but I do have enough friends. I have close friends, and a lot of other friends who aren’t as close. I have always had a hard time socializing, but I love writing, and for the past seven years I’ve written a blog called Suicidal No More, trying to give hope to other people in this boat we call mental illness. Schizophrenia is not a death sentence. For me therapy and meds have worked, along with case management. I have hope for Jani, and she has had a special place in my heart since I first saw her on TV a couple of years ago. And my birthday is in January. Calalini won’t win. It might always be there, but it won’t win.

    Note from Michael: Your life now sounds like a real win, Jennifer. You should be extremely proud of what you have accomplished because I know how hard it is. I think it is great that you are going into social work because there are almost NO social workers who have ANY knowledge of psychosis so you can do a lot of good. The future “Janis” are going to need social workers like you. Thanks for the pep talk.

  31. Hi Michael,

    I just watched the story on 20/20. I’m sorry Jani is still having suicidal thoughts. I know how tough it can be to acclimate to the world – I have a different story, I have a chronic illness and was bedridden during junior high and high school. I’ve found it difficult at times to acclimate because I missed so much of the social experiences (reading body language, group dynamics, etc.) I’m now in medical school and watching the story tonight made me think about going into pediatric psychiatry. If there’s anything I can do to help please let me know.

    Best of luck,
    Beth

    Note from Michael: Thank you, Beth. I am glad you are going into pediatric psychiatry. We need more. There is far more demand than there is supply.

  32. Dont stop believing
    Dear Michael, I watched your program today, I live in the uk and I really wanted to say a couple things

    Firstly as a teenager I suffered severe depression and attempted suicide on a number of occasions and did infact suffer some hallucinations. I felt I was a burden on people and they would be better off without me. I think expressing the joy jani brings to you is important, she may feel like a burden. It may be woth expressing to her how sad you would be without her but most of focus on the positives.

    I did eventually learn to live with my depression I am now 27 and have good and bad days. Jani needs to learn how to live with her sz. It may be worth telling her about the many brilliant people who have suffered mental illness. There are lots of famous people out there that have embraced there disorders and done exceptionally well for themselves.

    I also had a dog a pet may be worth considering when I was completely alone I had my dog and still do

    Finally I think you should be more positive jani has come so far. I understand you don’t want to build your hopes up but jani needs to know she CAN do things. I tell my 4 year old she can be and do anything if she tries hard enough. I can understand why you have told he about the negative sides of her illness but she is still a child and the future can hold miracles 50 years ago people hand not landed on the moon. There is hope. You should treat her as a ‘normal’ child and give her hopes and dreams

    I hope you find any of this useful I can not imagine how hard your life is but I could have died. I didn’t. Some children get run over murdered or cancer you still have jani and future brings hope.

    Sarah

    Note from Michael: Thank you, Sarah. You are right. I do tend to focus on the negatives and the nicest thing about watching the repeat of 20/20 was seeing how far Jani has come. It is like night and day. She is SO much more in the world than she was then. I will take your advice. We do have a dog, as well as eight turtles and two fish.

  33. Forget Buddha and mind altering drugs. Get right with Jesus and get that demon away from your girl. Or just think that’s a religious ‘nutjob’ suggesting a ‘crazy’ idea and continue to be less miserable one day at a time. That girl has been influenced by devils and the only chance you have Jesus Christ.

    Note from Michael: Jackson Brown! I love your music! You seriously rock, man!

  34. March On
    Love is the primary thing and with that, Jani’s going to be just fine. She’ll grow up and learn how to cope. She’ll grow up to understand the difference between reality and hallucination. Remember, she’s only a child and like every other child, she has her future ahead of her. It’s a bright future for Jani because she’s had love the whole way. Don’t underestimate yourselves. Any child with a mental affliction can rise above it with the love and support of their parents. She’ll go far someday. And just think that by the time Jani is on her own, medications will have evolved and research will have been completed. So much can happen in just a year with technology. This is a good time for you to do battle. You’ve been given an entire arsenal to fight with. Collectively, your readers here have got great advice. I think “teenager” has some good points as well. But ultimately, you have to follow your parent’s heart for Jani. So far, you’ve loved her, kept her supported, and despite the “demons” that haunt her, she’s a happy child. I’ve seen the 20/20s and the Oprahs. I encourage you to keep pouring love into your daughter until you’re empty. The rest of her life will evolve from that! Give her all you have right now. You can liken it to teaching your child to ride a bike and running along behind while you get her momentum up. If you haven’t taught her to ride a bike, replace that with the same concept only with her entire life, and not just the distance she’ll cover when you let go of the back of that bike. Right now, your love is the hand holding the bike and you running to keep up with her little legs peddling is the momentum of her life, suddenly you’ll have to let go and let her do it, that’s when your love will go with her. All the hours of training and holding on will suddenly come to her and she’ll “take flight.” Trust it!!! March on brother!

  35. Come a long way.
    I have been watching ever since this story came out, I believe that was around 2008. I’m really glad to see that Jani has come a long way, and truthfully from what I can see she is getting much better. This is a fight that may never be over, and as parents you can’t ever stop and give up.

    I will continue to keep watch over you all, and pray that everything goes well.

    My best wishes to all of you, Kuroki

    Note from Michael: Thank you, Kuroki. Jani has come a long way since those early shows in 2009.

  36. Hi Michael,

    I’ve read this blog for a few years now and donated money from time to time when I could. I’m glad Jani has made a lot of progress in her battle with mental illness. This, however, is the first time I’ve commented because I felt like I actually had something worth saying beyond “I’m really sorry you guys are struggling”.

    You’ve mentioned she does equine therapy and volunteers at an animal shelter. Could you try making a play date out of that with another kid? Maybe the girl you mentioned in your blog post? It seems like Jani’s really happy there and probably feels more relaxed so maybe to start, you could try having her socialize in an environment where she’s actively engaged. I’m not a therapist or have schizophrenia or anything, I just struggled to connect with people as a child and this kind of stuff helped so I thought I’d put it out there.

    Also, does Jani enjoy reading? If she does, maybe you could give her books that focus on friendships and see what she gleans from them? It’s subtle but books can leave a powerful impression. You can’t really learn social interaction from a book but you can learn a lot anyway. Also, if she’s reading a popular book series, she’s got another means of connect with kids. (Again, not sure if she’s a reader or not)

    Finally (and you may have done this already but..) have you pointed out all the brilliant successful people out there with schizophrenia? People who have given the world so much like John Nash, Peter Green of Fleetwood Mac, Vaslav Najinksy (famous Russian ballet dancer), Brian Wilson, Kathy Kirby, and John Ogdon. I was diagnosed with ADD (inattentive type) when I was a kid and what brought me a lot of comfort was seeing all the people with ADD who had been really successful.

    Hope to see Jani continue to recover and gain strength.

    Note from Michael: Hi Kelly. Scheduling a play date at the shelter is a great idea and something we are trying to do.

    Jani does like to read but struggles to read by herself (even though she can read fluently). She loves to be read to and I think this is because she needs the voice of the person reading to her to drown out the voices in her head.

  37. Hi Michael,

    This blog really hit home for me. My ten-year-old son has Asperger’s syndrome and ADHD, and I too worry about his struggles in navigating social situations. His behavior when conversing with other kids his age is so similar to Jani’s. And sadly, he has also expressed thoughts about wanting to die (which has eased since he started on Celexa). It is heartbreaking.

    Thanks for much for sharing your experiences; it really helps to know that other parents understand.

    Note from Michael: You are welcome 🙂

  38. Beautiful Blog
    I stopped reading for a while. I started Grad School for Mental Health Counseling so I’ve been busy. I’m glad I started reading again. Your story is and has been so inspiring to me.
    Just wanted to say that this was a beautiful post.
    You guys are always in my thoughts and prayers.

  39. I don’t have much to say, other than – thank you. Thank you for loving your daughter. I’ve experienced two psychotic breaks as a young adult, and even though I’m ‘back to normal’ now, I’m still surprised by the fear and love and horror that speaking of those times today brings up in my parents. Just as my parents cannot fully understand what I’ve experienced, I will never know just how far amd long and deep they stretched to help me.

    I hope that occasionally you have the chance to glance back at the footprints on the path behind you, and marvel at the ever-increasing distance, the journey you’ve traveled on with your daughter. My best wishes for your family.

    Note from Michael: Thank you, Renae. I do. Everyday.

  40. Teach this girl physics.

    Note from Michael: I’m trying. She used to be more interested in those subjects. Not so much anymore. I am just so happy to have her “back” that I teach her whatever she wants.

  41. Fellow Childhood Sz.
    I’ve e-mailed you, but now I realize I could offer my friendship to Jani. I’m a 23 year old female Schizoaffective Disorder.. uh.. person. 🙂 Don’t know where you are since I only check in occasionally to see how she’s doing compared to my recovery. When I first saw her it was like seeing myself when I was 10. I wrote in the email my story, so I hope it helps you understand at least one approach to being functional. I’m no longer acting psychotic. My last attack was in 2010. You’re doing it all so much faster, I think. Your support has an infinite amount of effect on Jani’s recovery.

    Note from Michael: Thank you, Catherine.

  42. Hello. I have been following your story for a few years. I have had similar issues with my own son. Long story, you know the drill. He was ‘different’ since he was an infant, the violence started at age 6, the animalistic rages started at age 7 and would last for hours, with that wild, I-checked-out look in his eyes. He started talking about suicide and saying he was going to kill himself. Multiple doctors and dx later, turns out he had very severe sensory processing disorder, mood disorder, and PDD. Had I not met some very special ER doctors that suggested the proper dx on the spot and sent him for intensive neuropsychological testing, after seeing other docs for years, my son would be labeled schizophrenic, bipolar, OCD, ODD, BD, etc…or one of the many other dx that were suggested. Once we had the proper dx I figured out what to do on my own. I didn’t trust doctors at all after the time I wasted in therapy and them just wanting to dope him up. It was so bad before the dx and start of proper treatment, that I was contemplating sending him away. His brother was an infant; I was 100% sure he was going to severely injure or kill someone in the house. I couldn’t let his little brother suffer like that and I was hopeless that anyone could help him.

    Through medication (abilify 2.5mg), supplements (multi, dha, attentive child, ***inositol (life saver…wow!!)***, 22k iu vitamin D), therapies (vision, socialization, psychotherapy), lifestyle and parenting changes, my son is stable. He is not normal, but he is stable, functional, and basically close to normal. He is turning 12 soon. I have spent the last 5 years or so working on figuring out how to help him. By God’s grace I found the combination of things he needed to become stable.

    You will find this for Jani as well. I am sure of it. I believe if you keep on working and figuring things out, you will find the magic combination that will not only keep her demons and violence at bay, but also make her a functional person.

    I know what you mean by standing on the wall. I spent quite a while in the same place. You were so used to the chaos that the calm is very unsettling. Now it’s time to move on to the next step for your family. You have to keep moving forward. You have to keep trying new therapies & supplements. Don’t be afraid to take the next step to ‘maker her better’. Don’t ever stop trying to make her better. All the hard work will pay off. It has paid off and will continue to. If you’ve gotten her to this point in just a few years, imagine where you can get her to be in another 5 or 10 years. She will be OK.

  43. Why did you have another child if you knew what was going on with Jani?

    I also don’t agree with the diagnosis, but that’s a whole different e-mail.

    Note from Michael: Because we didn’t know what was “going on” with Jani at the time. But even if we did, it wouldn’t have changed anything. We were desperate to find Jani a friend. We couldn’t do that, so we created one. I don’t regret it and never will.

  44. I’ve watched the shows about Jani, and just wanted to tell you what you already know…you’re doing the best possible thing. I was diagnosed sz when I was 16, taken out of school, in hospitals, out of hospitals, violent, suicidal….y’know. The drill. But my family never once stopped fighting for me, never stopped fighting to keep me with them. There weren’t just nights they didn’t sleep, but weeks. I sometimes think my younger brothers learned to speak just talking me down from whatever mental ledge my mind put me on. My family never gave up, even during the times that I did, and I gave up a lot. It’s hard. The people who love us never can really know just how hard. Just as my family can’t know what the world is like for me, you’ll never be able to know what the world is like for Jani. How confusing it is, how things can get mixed up. All you can be is there, and it’s the most important thing. It makes all the difference. My family was always there, they’re always there now, and it’s been a long time. I’m 29 now and I never thought I’d make it that far. I always figured I’d be the guy who didn’t make it, but I have, and life is pretty good. Anyway. Just hang in there, you guys and Jani…it’s a wild ride, you just have to hold on together.

    Note from Michael: You are right, Ryan. I will never know truly how hard it is for Jani. And that kills me because I want to share her struggle.

  45. I watched the Oprah documentary on Janni and then sought out your blog. I wanted to let you know that you are not alone, that there are others like you who don’t get to worry about skinned knees and sleepovers, instead we worry about suicidal tendencies and our children having no friends. My 11 year old son was diagnosed with bipolar disorder, generalizaed anxiety disorder, social anxiety disorder, ADHD, severe memory deficit, severe executive functioning disorder, and other learning disabilities when he was 7 years old. We feel very alone as parents because most people don’t even people a child his age can suffer as severely as he does. He is medicated now and doing well but there are still so many problems. Over the last year we’ve had to admit to ourselves that our youngest child, a daughter age 6, is also showing signs of these disorders and has been for some time (we also have a 9 year old daughter who is completely unaffected). The journey starts again…I guess it never ends. Feel free to contact me if you ever want to take to a parent who gets it.

    Note from Michael: Oh, I know, Shawna. The biggest thing to come out of the media attention has been families all over the world like yours who have reached out to us. Some have reached out to offer support. Some have reached out because they needed it. When the worst of it was happening it felt like we were alone but we knew there had to be others. Jani couldn’t be the only one. No one is the “only one.” We have set up or helped to set up two private online support groups. If you are on Facebook, we have this closed and hidden group: https://www.facebook.com/groups/144622772289553/. We also have a closed and hidden Yahoo group: http://health.groups.yahoo.com/group/parental-support/. Thanks for reaching out.

    PS: One more thing. Email me privately at michaeljohnschofield@me.com and let me know where in Canada you are. I ask because I do have several families in Canada who could use some support.

  46. just watched Jani’s story on the health network. You guys are the best parents anyone could wish for. Hang in there. Despite her illness, Jani seems like a brilliant and loving girl. Although you say she cannot interact with other kids, on the other hand she asks you questions like “what mental illness did he have” nine year olds do not know how to ask questions like that. It seems like she was always more brilliant and mature than her age. I am sure she will go far with your guys love. I wish her and your family all the best. I wish I could live nearer I would love to go on a cooking date with Jani and make some chocolate cupacakes :). ps. you really have a gift when it comes to writing. I hope Jani has this gift as well, it will help her in the future I am sure.

    Note from Michael: Thank you. I hope so, too. I would love Jani to tell her own story one day.

  47. Amazing
    I just want you to know that I’m so deeply touched by your story and the amazing fight that you and your wife have put on for this sweet girl. I can’t imagine how difficult this must have been for you guys, but your children are tremendously lucky to have such unconditional love and support from the two of you. I’m so moved by your families story, thank you so much for sharing it.

  48. I watched January’s story on the health channel and wanted to know how she is doing recently. This is an extremely hard battle you’re fighting. I remember what you said on the documentary; finding happiness in this day, just this day. But also I will begin praying for your family. God bless.

    Note from Michael: She is doing okay. Bodhi is doing okay.

  49. amazing
    I just want to say that you are amazing parents. So many would have given up when faced with such odds. I applaud you for seeing the good in your child when so many challenging behaviors were apparent. Your love and attention will help your children to reach their full potential.

    Note from Michael: I think parents don’t give up. I think they run out of options. We were lucky in that we had wonderful friends and strangers that helped us maintain two apartments for two years.

  50. I recently saw your story on the health channel and it instanly caught my eye.My step mother has Schizophrenia so iv visited my fair share of mi facilities but i never encountered someone so young. After seeing her struggle first hand and knowing she had a knoweledge of reality i couldnt even began empathyze what jani has deal with. It took me well into my late teans to even truely grasp her illness an that was looking from the outside in.You truely are amazing people. I know you only see yourselves as parents and you are, but you are so much more than that. I try to believe that everything happens for a reason even though some times its harder to rationalize that. For what its worth i feel as though janis only chance in this world was with you two. Just try to remember on the bad days you two really are amazing people,with an amazing family. Im still holding out for a “cure” myself. I have memories of my step mother when she was well yet my younger brother(her son)doesnt. I hope for the day some miracle occurs so they can finally meet. So believe me when i say my heart goes out to you, and never stop fighting because i find hope in you now.

    Note from Michael: It’s hard when you don’t see signs of recovery, which it sounds like is the case with your step-mother. Is she not showing any improvement? Hopefully they just haven’t found the right med combination yet. Does she take her meds. In Jani’s case, she has come so far so we do have hope. We still take it one day at a time but we’ve gotten her back from the worst of the disease.

  51. My sister
    My sister who is a couple years older than me was definately “different” growing up. The troubling part was that my mom and dad didn’t have the resources to do much about it. She battled epilepsy and they assumed the stong medication caused her to have a learning disability. Her learning disability included rage, abuse, being out of touch with reality. She was a threat to me and my younger sister and even chased me with a knife. My dad battled alcoholism and drug addiction and my mother was a victim of abuse so she learned to keep her mouth shut. My sister never got the care she needed so in her 20s she experienced psychosis she was finally hosipitalized and diagnosed with schizophrenia. I can see her in Jani and it disgusts me to think that her disicline was always some sort of abuse and no treatment or help (aside from an occasional social worker). At 25, I quit school and became her representative and had POA over her medical records. I pushed for her treatment and finally, she did. Too many years after my dad beat her up.

    Note from Michael: I am very sorry to hear that. We have some things in common. I got chased by mother with a knife when I was a kid. If you want to contact me directly you can do so via michaeljohnschofield@me.com. We have some private online support groups for caretakers of mentally ill siblings.

  52. Calalini
    Im confused if you are fighting against calalini, or the cats and 7 rats that talk to her. Because isn’t that they are the problem. If i remember i think in the oprah special , Jani said she liked calalini better than ths world. So i dont really think that the fighting or hoping to find a armistice against the Place. But more so the bad characters such as cat 400.I thought calalini was a beautiful place im aussming because she says she likes it better than here, even though its hot. And that the battle is against them , not calalini although they live there.

    Note from Michael: Jani has never described Calalini as a beautiful place. She says it can get up to 200 degrees F there (nearly 100 centigrade). Sounds like a pretty hostile environment to me. But quite honestly other than the temperature she really hasn’t detailed what Calalini is like.

  53. This is child abuse
    Are you fucking KIDDING me????

    Your child is “suicidal” and tells you she wants to die, and you blithely explain to her how Michael Hutchence killed himself – in graphic detail?? And that is only the TIP of the iceberg. The only way this child will ever recover is to be taken away from her psychotic parents.

    I am dialing the number of the child abuse hotline the second I submit this comment. I believe Jani needs intervention from the state to save her from the abuse at home, and Bodhi needs protection before the damage to him is irreparable.

    Note from Michael: Thanks for the head’s up. Now I will know to expect them. By the way, they are called DCFS (Department of Child & Family Services) here in LA County. Because of “concerned citizens” like yourself, we’ve had three or four visits from them. They come check on the kids and make sure they are okay. They’re actually quite nice. Not sure how explaining how Michael Hutchence killed himself qualifies as child abuse but hey, knock yourself out but I’m sure their must be kids in Morgantown, West Virginia you can help. How is Comcast by the way? Do you like their service?

  54. What an amazing family…
    I must start with the comment above me, or it was as I wrote this. Concerned Citizen sounds angry but also very ignorant of what is really going on.
    Having seen the documentary about your amazing daughter January I can absolutely see what you are talking about when you sorta…let out some of your thoughts here. Unfortunately this being the anonymous internet people like concerned citizen can just pop in, knowing NOTHING about you or your family and make pronouncements like your a bad father.

    I have been thrown by what I read and the ignorance that comment had…actually I’m quite angry about it but I’m going to try to get back to what I WANTED to say…

    I am in awe of you and your whole family and the commitment you’ve shown to showing your daughter a better life. I found her to be wonderful and of course tragic but I can only hope that she can someday find peace while still here on this earth, be it pharmaceutical or some sort of divine intervention (I think you all have earned it)

    Anyway, try not to let comments get you down as some people may happen here knowing NOTHING of your family. I found this blog after seeing the doc and I thought it was amazing to read your thoughts behind the scenes of the unreal battle you fight every single day of your life for your lovely little girl. I’m not much for religion but I will try to remember January and your family when I do pray.

    Tommie

  55. Your truth is amazing and absolutely wonderful
    I find it hard to believe anyone can criticize you in a situation that challenges you to to the core daily. I have days I want to kill myself because my boyfriend does this or that and I feel abandoned and I don’t even have a true clinical depression. I completely support your truthfulness, your humanity and everything else I can think of. I think you are incredible.

  56. How does Jani sleep?
    In the Oprah interview you mention that Jani slept very little as a baby. Has that changed?

    Note from Michael: Yes. Jani sleeps a full night now and has really since about two years old.

  57. Medication Alternatives
    My brother has recently been prescribed Zyprexa. He is 49 and they believe his issue may be Bi-Polarism tho he’s never had any problems in the past. During his unexpected “break”, he had a slight schizophrenic episode that they think was the result of an extreme manic swing. I had seen you and your family on TV last year sometime and I have to say that it was the first thing I thought of when the “s-word” was being thrown around. It scared me to death, but your story also brought me comfort knowing that you CAN survive it. The lengths your family has gone to support Jani are beyond compare! I hope that I can provide the same support for my brother. Which leads me to a question. I’m shocked at the price of these medications! Have you ever tried any of the online pharmacies (Canada) with any positive luck? The cost can be 1/8th what US pharmacies charge. Hang in there.

    Note from Michael: Hi Beth. I got and replied to you email. I don’t know of any off the top of my head but I can certainly look into it. I just to know the state you are in.

  58. Hi
    I saw you guys on tlc I think? Anyway that was a month ago and I have been thinking about you since. Just read over most of this blog today as well as a lot of the comments.
    I do think you guys give so much hope with any family struggling mental illness. You are very inspiring people and I wish I could be more like you guys living on the moment.

    My husband has many issues such as bipolar depression anxiety add/hd etc… I knew before I married him but I didn’t know how all that would effect me… Boy was I wrong. Regardless we have been married 15 years now. We have 7 kids. 2 of our boys have dx aspergers, add/hd, OCD odd etc.., my son James: I knew something was not right since birth but all of a sudden everything seemed to get worse at once and he went through the dx process at age 5. Like you said, we have regained some of him but hes not the same as he was when he was younger. He’s 8 now and doing better but we both have gone through the sane emotions as you just described. He still has difficulty with communication etc… He does sometimes say that he hears voices and I wonder if it’s not more like sz… My other son is a year younger than he and is also dx with autism spectrum etc..,

    In response to an earlier commenter… If my kids didn’t have siblings then they wouldn’t have friends. Just because someone has a mental illness doesn’t mean they should be deprived of siblings. In my opinion it’s in these cases that siblings are most needed.

    Note from Michael: Kim, we have a couple of online support groups, both for parents and for adult sufferers of MI. If you are interested email me at michaeljohnschofield@me.com or come on over our Facebook page at http://www.facebook.com/janifoundation. All of our online support groups are secret and secure so members feel safe sharing.

  59. comm mental health is moving in right direction
    As others have noted, I, too, have been struck by your resolve and willingness to do whatever it takes. I’m so happy to hear that Jani’s current medications have tipped the balance to being more helpful, and providing her and all of you an opportunity to experience life in a different way. There is much to hope for — we are slowly, but surely, making progress in helping people with SMI have accesss to the rehabiitative supports they need and the culture continues to shift toward a belief that people can find their own path of recovery and define themselves in this world in a very meaningful way. I’m a full believer that people with SMI can succeed in school, return to competitive employment, live on their own, and develop meaningful relationships with others — it’s all a matter of providing the right supports. Indeed, we all need such supports.

    Note from Michael: I agree completely. That is what I want to see-full life support to allow integration within the community.

  60. complete healing for jani
    Hello Jani and family, I am sure that all of you are kept in many peoples prayers to God everday and night as you are now in mine. I am sure that in your attempts to seek healing for your daughter that you possibly sought other avenues non medically related such as seeking a priest known for having the gift of healing powers as I have heard about this one catholic priest residing in Florida. Also has your daughter been blessed by any clergy for the small potential that your daughter could be tormented by a demon spirit who is piggybacking and playing on your daughters emotional illness at one point or another. Just wanted to ask although you’ve probably heard all of this before in the past. I pray that God will give you strength and a.miracle of healing for both of your childrens mental illnesses.

  61. I hope this comment finds you all well. I am currently reading January First, and it is a very moving book for me. I am bipolar myself, and I see a lot of Jani in my 12 year old nephew. I love him immensely but his behavior is off the charts. He lives with me so I am with him 24/7. I hope to have the strength to see him through his teens. I am living with a terminal illness, so I want every day to be special. Where do you get your strength? I am stressed to the breaking point.

    Note from Michael: Where do I get my strength? I don’t. I just do it. But it definitely helps not to be alone. We have two online support groups for caretakers/parents of MI children. One is a private Yahoo group open only to members: http://health.groups.yahoo.com/group/parental-support/ and the other is another secret on Facebook (you have to contact me via http://www.facebook.com/janifoundation for the link).

  62. Inspired by Jani’s story
    Hello,
    I just want to say how inspiring I have found the story of Jani and of your entire family. I come from a long family history of mental illness. No confirmed schizophrenia, but there are bi-polar disorders, borderline personality disorders, ADD, ADHD, and depression just to name a few. I myself have recently come to terms with my own depression and suicidal tendancies which I have been fighting since I was 13. I think that the hardest part for me is the realization that I will most likely never be able to not take anti-depressants. I hate that. I hate being dependant on any kind of drug, but I now have a husband and a child and will do anything I can to be the wife and mother they need me to be. Thankyou for your courage and strength both as a father and husband to your own fammily and as an inspiration to so many others.

    Note from Michael: I have to take meds for the rest of my life (for depression). I take Lexapro. Someone who has a heart condition has to take meds for the rest of their lives. Someone who has diabetes has to shoot insulin for the rest of their lives. It’s what they have to do to live. And it what we have to do to live. That is how I see the meds. They improve our quality of life and allow us to enjoy things.

  63. My Calling
    When I see stories like this one, I want to help the person suffering, to “cure” them. I’ve always found it incredibly easy to empathize with people suffering from mental illness, as I am an OCD sufferer It was this feeling that fueled my desire to become a psychiatrist. Hopefully, I will be able to help many people like Jani once I get there.

    As long as she has wonderful, supportive, and caring parents like you and your wife, there is always hope for her.

    Note from Michael: Thank you, but remember this, Emily. The desire to cure is noble, but it can lead to what Susan calls “The Miracle Worker Complex.” You want to be the one to make a difference and you get frustrated when that doesn’t happen. Your patient picks up on that frustration and the relationship goes downhill. I have seen so many therapists and psychologists fall because of that. The reward is not “curing” because one person can’t do that. What you can do is to be part of that person’s life. That is what they need. They need human contact. They need to know you will be there for them no matter what. I wish you luck.

  64. Alternative therapies
    Hello there,
    My name is Melissa and I am a nurse. I worked in psychiatry for 4 years and have lots of experience dealing with mental health issues. My family members all suffer from some form or another of a mental health difficulty. My experience in psychiatry left me dumbfounded!! The lack of “seeing the bigger picture”. My experience was that many mental health workers spend most of there time trying not to see the similarities between themselves and the people they are treating, keeping the patients at an arms length almost as if they were afraid they could catch the mental illness.This was astonishing to me! Empathy and an open heart is what in my opinion is missing in the field of psychiatry today! It was basically a place where people went to be medicated, and most of the time these medications created even more mental health issues. My sister actually had a psychotic break due to the use of antidepressant medications and has never been the same since, she still hallucinates! I have been exploring many healing modalities for 4 years and have recently come across a method called the “emotion code” the jist of it is……..when we experience a difficult emotion sometimes if it isnt fully processed it wont leave the body and then can cause many different issues including mental health issues. This can also happen while we are in utero! A baby feels their mothers emotional states and since it doesnt have the skills to work through it and let it (the emotion) go it gets trapped and creates illness of one degree to another. Seems “hokey” i know, but I assure you its real!!! Even if it sounds “crazy” to you. its worth a try! its non invasive and will not negatively influence you child in any way. It will not affect her medications either. There are many people who know how to administer the “emotion code” or you can learn how to do it yourself. In my opinion, there’s nothing to loose with trying to heal your beautiful daughter and family! my thoughts and prayers are with you and jani. any questions dont hesitate to email

  65. Real Mental Health Healing!
    please take the time to google the book and system “emotion code” I feel that it could possibly help Jani. I am a nurse with 4 years psychiatry experience and even though the emotion code is a really new way of thinking its worth a try and it could possibly dramatically healp your daughter. It will not interfere with the treatment or medications she is already receiving! Nothing to loose in opening your mind to alternative healing measures!

  66. Jani is a blessing
    I just finished your book. I had to put it down several times to cry or just think about where you’ve been mentally and physically. My daughter is almost 20 years old. Although she is not sz she has been diagnksed with ADHD, severe depression, severe panic disorder, chronic pain (stemming from a go cart accident when she was 2 1/2yrs old where she had her nerves torn from her spinal cord- a brachial plexus injury and she lost the use of her arm) Post traumatic Stress Disorder and histrionic personality disorder. We have run through a long list of medicines and she currently takes 6 different meds a day just to function. Johns Hopkins Hospital recently played a huge part in some of the mental diagnostics and they seem pretty accurate. The HPD is a huge problem for her and it seems at times she is not “here” she lives in a different world. Because she looks “normal” some people react as though she should just shut her mouth but when she gets in her rages she doesnt remember things she has done while she is worked up. She is very abusive towards me, very violent towards her brother but her stepfather is her calming factor . Unfortunately as you well know mental illness will drive a wedge between couples. So far we are still standing. Many people suggest i throw her out of our house because she is old enough but what people dont realize is she is not “normal”. Her life of pain meds led her to heroin and even though she is not actively using heroin she still has an addictive personality. She smokes marijuana medicinally per drs suggestions (she smoked prior to diagnosis anyway) and it seems to calm her down and help her moods at least. But being an addict she can’t get pain medicines. Like Jani, she is very very smart, too smart the doctors have said. She is beautiful, artistically talented but will most likely never be able to hold a job because of her issues. I want to run away from it all but I cant. She is and always will be my baby regardless of her age and hopefully she will get passed all the stress triggers and find some happiness. She has recently checked herself into a mental inpatient facility because she wanted to kill herself and as we were walking her in she smiled and said she really liked when she can stay in hospitals. Sadly i thought she is 19 and would rather be in a psychiatric ward then with friends. I hope Jani and your family can find peace in this crazy thing we call life. Its hard dealing with mental illness of any kind for all those involved. My prayers go out to you and your wonderful family.

    Note from Michael: You sound like you could use some support. We have two private online support groups for parents like yourself (age of child is not a factor-they are always our babies): https://www.facebook.com/groups/144622772289553/ on Facebook and http://health.groups.yahoo.com/group/parental-support/ on Yahoo.

  67. School
    I read your book and was touched by your story and your desire to sacrifice it all for your daughter. I must say, the only part of your story that saddened me was your judgement of Jani’s school and teacher. I have taught for the past 8 years and had a child with schizophrenia in my class with an individual parapro assigned to her. I formed a close relationship with her and her parents, yet we struggled throughout the year to keep her in class with 27 other first graders. I was bit, punched and kicked, along with other students in the class. There were many loud and frightening screaming episodes throughout the year. I had many problems and complaints from other parents who were understandably upset when she physically harmed their children. All along, I had state standards to meet, assessments to create and grade, among many other responsibilities. Through it all, this child’s parents were extremely supportive of me and did all they could to volunteer in the classroom, adjust behavior plans, medications, incentives and so on. They even began pulling her out around 1:00 pm daily when we realized her behavior escalated more as the day wore on.
    I am saddened by the fact that you demanded an equal opportunity for your child to be educated, but missed the fact that the other children in her classroom deserved the same rights. You are wonderfully protective of your daughter, but I ask you to understand that the other students in the classroom have parents who feel just as protective of their child and their child’s education. I was hurt at your judgement of the staff. It sounds like they were doing as much as they could do to help you and Jani, and were met with judgement and referred to as “idiots.” It was shocking, because you were so openly honest that you could not control her involuntary behavior, so much to the point that your family had to separate and stay with her one on one, yet you expected the school teacher to work with her in addition to teaching 16 other students. You also criticized her teacher and stated that her job was to inspire Jani, and that she wasn’t doing that. If that’s the answer to Jani’s problems, than you as her father were also unable to “inspire” her and solve her issues. I would have preferred if you were honest about this and admitted that a lack of inspiration was not the problem. You are an educator, and I know you understand that even a student walking into your lecture late is disruptive, let alone a student who is physically and verbally assaulting others while you are trying to teach. Please don’t give up the fight, and remember to give credit to those fighting just as hard for your child as though she were their own. I am on your side, along with many, many others.

    Note from Michael: Oh, I absolutely agree, Laura. But you must remember that I was writing in present tense so I had to write what I felt AT THE TIME, not how I feel now. My feelings in the book should not be representative of how I feel now. I was scared and angry and blaming a lot of people who didn’t deserve it. That was then, not now. In the acknowledgements, I take time to thank the school district who despite my behavior have become great allies.

  68. Thought
    Hi Michael,
    I am sure you are inundated with ideas, thoughts, suggestions and the like and I can only hope that this suggestion is helpful. I am not sure where you live but more than likely you have a university fairly close by that has Special Education program. Contact the Special Ed Dean and introduce yourself. Inquire as to whether they can post a volunteer opportunity to work one-on-one with your daughter. The student could private tutor with her academics and work on social skills. Perhaps that student might consider putting together a small socail skills group for girls Jani’s age that are struggling with mental illness. It could be a welcome opportunity for a dedicated student to gain valuable experience and a great resource for your family. Aside from this thought I wanted to add that I have followed your story since I saw it on tv a few years ago, you and your wife are inspirational. If only every parent in this world showed the love and dedication to their children that you do humanity would change course. God Bless and stay strong.

    Note from Michael: We actually tried that a few years ago but it didn’t work out very well. In terms of other kids with MI we have not been able to get any universities interested.

  69. Growing Up
    It is hard, growing up, and living through this disease. I am fourteen years old now, but I, like Jani, was diagnosed with childhood schizophrenia. I was seven, though.

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