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The Fog of War

It’s hard to protest against a war when you are in it.

 

My last blog, The Safety “Dance”, produced I think an interesting and valid debate over the stigma of mental illness.  The blog was written in response to how I have seen people react to the violence that can sometimes be a part of psychosis. It basically a statement to the general public that until you’ve seen it, you will never understand it. And when you do see it, you learn, no matter well-intentioned you are, if you are cut out to be a caretaker of someone mentally ill. As Nietszche wrote, “And if you gaze for long into the abyss, the abyss also gazes into you.” If you want to work with the mentally ill, eventually every good quality you have will be tested. You will be tested. And whether you hold, bend, or break has nothing to do with your strength of character. Breaking is not a moral failure.

 

I am increasingly coming to believe that there are no “moral failures.” There is only what you can take.

 

This is part of the mission of the Jani Foundation, formally the Village Project. Everybody has their breaking point. Nobody can last forever. So it is my hope that the Jani Foundation will provide respite and other services so we, as caregivers and society, do not break.

 

Interestingly enough, it is only us “neurotypical” people who break. The mentally ill never break. They may think that they do but they do not. They live with a struggle that would break us in seconds. Instead, they bend and they bend and they bend. We are the ones that ultimately force them to break.

 

At any length, my focus on violence once again, as it has before, produced some criticism of me amongst adolescent or adult mentally ill who feel that I am reinforcing the stigma of the mentally ill as violent and therefore something to be feared. I responded, quite bluntly, that I ultimately I don’t give a damn about the stigma. What I care about is the lack of services. Violent or not, every mentally ill individual is owed the dignity of being treated like a human being and should not be punished for something they cannot control.

 

The responses that I got, whether they agreed with me or not, all made me think and I have continued to think. I thought a lot about it today as I participated in a NAMIwalk as part of the BringChange2Mind Ventura County team. BringChange2Mind and NAMIwalks are all about fighting stigma. I hadn’t expected Jani to do the walk and so she was on the beach with one of her remaining interns. Bodhi was quiet in his stroller.

 

We started at the Buenaventura Beach boardwalk and moved along a five kilometer route. At first it was like getting out of the gate in a marathon, but once we were off walking, the crowd began to stretch out. The weather was stunning, with temperatures in the low seventies. I walked along, absorbing the sun and the smell of the sea. The route then turned inland at the Ventura River estuary and we found ourselves walking next to a swamp. It was peaceful, but there was no one there to see us, that is except for the Ventura City police and Ventura County Sheriff’s deputies who we spotted as we passed over the Amtrack Oceanliner track. They were looking down at something in the water. Pretty soon we spotted an ambulance slowly crawling along the path, patiently waiting for NAMIwalkers to get out of the way.

 

You only ever see a group of cops on a railroad bridge for one reason and there was no urgency in their manner. They were just standing, waiting.

 

I wonder whose body was found?

 

A homeless person?

 

Probably. They live under railway bridges. Was he hit by a train? Did he die of a drug overdose or alcohol poisoning? Was it exposure?

 

I don’t know.

 

But what I do know is that whomever it was whose body was found below that railway bridge, he/she was almost certainly mentally ill. And he or she had been discovered just as a few hundred NAMIwalkers were going past.

 

I think that is when it hit me.

 

I was both right and wrong.

 

It is not easy to tell what killed this man or woman. Was it the mental illness that drove them to a point where they either lived under a rail overpass, self-medicated to the point of death, or simply threw themselves in front of an oncoming freight train?

 

Or was it the stigma of a society that recoils at the sight of someone dirty and unkempt, mumbling to themselves as they shuffle down the street, wearing six coats even though it is 90 degrees outside?

 

In military parlance, there is a term called “the fog of war.” Its origins come from the time before smokeless gun powder, when black smoke from muskets and cannons would be so thick that it would envelop friend and foe alike, making it impossible to tell who you were shooting at. Field commanders would lose sight of not only the enemy’s position but that of their own troops. It is hard to fight a war when you can’t see what you are shooting at.

 

The Fog of War still exists, although today it is not a result of black gun powder. In modern warfare, the rapid movement of both friend and foe makes it difficult to separate friend from enemy and in the pressure of combat, with targets all over your radar screen, you can end up shelling or bombing or shooting at your own side or that of your allies.

 

Mental illness is perhaps the ultimate manifestation of the fog of war. You can’t see your enemy. Even worse, it can be hard to see your friends.

 

Mental illness turns your loved one into a living, breathing, walking battlefield. The medications are the projectiles you fire into your child’s body, but you are largely firing blindly. You can see the effects of the enemy’s attack (the psychosis and the behavior) but you can’t see the enemy. You are shooting in the dark, hoping you hit the target, but praying you don’t destroy the very thing you are fighting for.

 

Jani is now on 300mg of Clozapine, 750mg of Lithium, and 2.5mg of Haldol, yet the hallucinations are growing stronger. She is on enough heavy medication to stagger a normal adult, yet she is still playful and alert. Yet, I never sleep very well when I am “her staff,” meaning a night I am in her apartment. I find myself constantly checking on her, going to her bedroom door and watching, waiting to see her chest rise again so I know she is breathing. I watch the large stain of drool spread across her pillow in bedsheets, and when I eventually do go to sleep, I lie down in that wet bed and pray that some part of me will sense if her heart stops. I have watched her fine motor skills deteriorate. At first I thought she was just being “clumsy,” until I remembered that she didn’t used to be clumsy.

 

Why, in God’s name , do I put her through this?

 

Parents, like military commanders, have eventually have to make decisions. Every one hopes they will never have to choose the lesser of two evils, but sometimes, for some of us, that day eventually comes.

 

So you weigh your options and you make a decision. And you pray that you made the right one. Because when your child is mentally ill, ultimately you have to make a decision. No one else can do it for you.  And no I am not talking about getting the “diagnosis.” The decision point comes long before that. The diagnosis is just naming what you have already been fighting and it does very little for you.  It gives you no greater clarity. At first you hope that the doctors will be able to “fix” what went wrong. And that is what the anti-psychiatry group never see. They never see the child before. Nobody except those who were with us when Jani was growing up saw her as she was before this. They never saw what she lost and the battle she wages everyday to hang on to what remains of Jani Paige.

 

The doctors can’t fix it. They can make no promises (and they don’t). They tell you take it one day at a time if they have any sense at all.

 

You fight every aspect of the system from insurance to the hospital to the school for years before you realize that they are too paralyzed by the fog of war to take action.

 

And so you lose faith in almost everything. You certainly lose faith in most of your fellow human beings.

 

And the fog only gets worse. It becomes difficult to tell if this or that psychotic episode had an external stressor. Did somebody around your child make it worse? A teacher? Another child? Another parent? The disapproving looks from other people as your child melts down in a McDonald’s because she spilled her drink on herself and starts trying to strip her clothes off. You focus on the tactical situation, ignoring the looks at your back, focused on your child, kneeling over your child while she screams, writhes, and kicks at you on the floor and you calmly try to convince her that you can “fix” it, lying and saying you can take care of it even before you know if you can, then remembering that McDonald’s has high power air dryers in the bathroom and trying to figure out how to get your daughter into the men’s room because you can’t leave her half naked on the floor in front of the soda machines. And then she hits you because you want to dry her shirt. Even though you tell her you can dry it, she hits because she is fighting back, not against you but against the disease inside of her, fighting to be able to put on a slightly damp shirt when something inside of her is compelling her like a burning iron to strip and fight like it has commanded.

 

The fog of war means that I am trying to calm Jani down at the same time that something inside her head is telling her I am not to be trusted and inflicts pain on her. The fog of war means that when she hits me she could very well be trying to stop the pain inside her head, but she can’t get in there.

 

The fog of war means you can’t trust anyone because anyone who doesn’t know you thinks to themselves that they could do a better job if only they were Jani’s parent. The fog of war means that your allies, the mental health care system, looks for weaknesses in you, not your child. Because you they can fix. They can’t fix your child.

 

The fog of war means even those that read this can’t be trusted. Many parents conceal the actions of their mentally ill children for fear that they will lose their children for “allowing” them to be in dangerous situations.

 

The other night, Jani was at Bodhi’s apartment, having her dinner. I went down to take out the trash. When I came back, Susan was prying Jani loose from Bodhi. She had tried to chew on him. When I asked her why, she replied that she “had to chew on something.” She then proceeded to start chewing on her own hand.

 

What do you do in that situation?

 

In the past we would have taken her back to UCLA, but the UCLA doctors have done all they can.  Besides, every time Jani is there, she is mostly fine.

 

What good is putting her back into the hospital when tomorrow she will be fine?

 

So I reached for her last set up meds. I stood over her, making sure she drank them, and Bodhi came over, innocently, wanting to crawl up on the seat next to his sister. Jani reached to hug him. I, holding a cup of water in one hand and a pill bottle in the other, was paralyzed by the fog of war. I didn’t want to shut her down every time she tries to give Bodhi affection. But her arms closed around his neck and her mouth opened over his skull. Susan pulled him free while I was still standing there, dumbly, holding the cup of water that I should have dropped immediately.

 

I took Jani back to her apartment. On the way back, she stops every few feet to look up at the same point over her head. I ask her what she is looking at and she defiantly insists “nothing.” Yet her head keeps drifting up, locking on a point in space, her eyes following something. Every time I ask her a question, she looks up, as if waiting for a response from “nothing” before answering me.

 

And when she looks at me, her eyes are glazed over and there is a strange smile on her face. But the truly scary thing is that she is looking at me the same way she looks at “nothing.” I realize she is not one hundred percent sure that I am really there. She is not sure who is the hallucination and who is reality.

 

Back in her apartment, I ask her what she did to Bodhi. She pauses, looking to her side, clearly trying to remember. There is no quick denial of “nothing” like a normal child. She is not trying to lie or cover up her mistake. She is trying to remember. Next, I do what her outpatient psychiatrist has started doing and I ask her what we did that day. This is done to establish how “present” she is and it is a way to try and get her to focus on the real.

 

Again, she looks off, trying to think. She looks back at me and opens her mouth, as if to speak, but the words get caught. Whatever she was going to say is lost. Eventually, she says “I’m too tired to remember.”

 

We saw many animals that day, going to Jani’s favorite place. We saw Great Danes, a nine year old cat named Kitty that will let Jani pick her up and carry her around like a baby, two parrots, doves, and a chicken.  I will never reveal where this place is because it is Jani’s heaven, the only place on Earth that she is truly present and truly happy.

 

We had done this only one hour ago, but Jani couldn’t remember, and she was using the excuse of being tired to cover it up. Only when I prompted her memory by asking “Did we visit someone today?” did she start to remember.

 

In the shower, her eyes kept drifting up. I kept asking her what she was seeing and she kept insisting “nothing!” Trying another track, I asked her what “nothing” looked like.

 

And she answered, “A dog.” But she answered too quickly.

Out of the shower, she started telling me a story about how Mr. and Mrs. Nothing were going to Roxy for the weekend and they were leaving “baby nothing” with us. Her eyes would go right and left and it suddenly hit me that she was making up the story on the spot.

 

With sudden dread, I realized that Jani was, and had been, using her imagination to cover whatever she was really seeing. She was really seeing “nothing” but it wasn’t a dog. Whatever she is seeing, she either can’t or won’t tell me. Maybe she tries to make them into dogs so they are less harmless. Maybe she knows that I won’t take her animal hallucinations as such a threat. Maybe she just can’t name whatever it is she is seeing.

 

I had always used her imagination as a tool to bring her out of psychosis. Now it has become a defense for her hallucinations, a way to conceal their identity.

 

In the fog of war, one of my weapons against her hallucinations has produced the smoke that conceals them.

 

And so once again, I am losing this war.

 

And most of the parents at the NAMIwalk had kids who either are now or have been in residential.  They tell me how it did “wonders” for their child and how their child is now grateful they were sent there. Probably true. But in the fog of war it is hard to tell.

 

And the fog of war makes me question a walk to raise awareness against the stigma of mental illness that walked where nobody could see us. I had at least expected that we would be walking through the streets of Ventura. I had imagined bull-horns and picket signs and protesting marchers chanting “What do we want?! An end to mental illness stigma! When do we want it?! Now!”

 

But there was none of that. We were our own witness, all the walkers. And the dead man or woman under the bridge.

 

So what do I think about stigma now?

 

I think the disease is the enemy and the stigma is the “friendly fire.” And friendly fire can kill you just as easily as the enemy.

 

I think there are two different stigmas. I think adult mentally ill and mentally ill children face different stigmas. Adults, desperately wanting to be accepted and live normally, face the stigma of fear of what they might do. Children face the stigma over what they DO do. They face the stigma of an education and behavioral based mental health system that blames them for actions they can’t control, despite the fact that they try so hard for us.

 

They try. They try so hard. And yet so much of the world judges them as “brats, behavior problems, etc.” I have even heard Jani’s interns talk about Jani’s behavior with great sensitivity but then describe the actions of another child, who’s behavior sounds very similar to Jani’s, as a brat.

 

The behavioral model of psychology is the enemy of mentally ill children.

 

In the fog of war, it is hard to know who is killing the child faster: the illness or the stigmas.

 

But in the fog of war, there is still one thing I can see.

 

Jani, and other mentally ill kids (and adults), are stronger than the rest of us. So much stronger.

 

We should not be fighting to prove that they deserve us. We should be fighting to prove that we deserve them.

 

Because we haven’t done much to earn their trust.

 

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29 comments on “The Fog of War

  1. I wouldn’t say residential has done “wonders” for Tim. Of course, we’re still in the thick of it.

    I would say that it has given him more tools to learn how to co-exist with his hallucinations. He doesn’t always apply them, but he remembers them later, and thus the learning behavior is setting in.

    And I would definitely say that it has done wonders for our daughter, who was lost in the shadows of us dealing with Tim’s rages and psychosis. We’re starting to find her again. And, frankly, we’re finding our relationship as a couple again. Residential hasn’t “saved” or “cured” Tim. It has helped him. But it has saved the rest of us, to some degree.

    Years ago we started doing timelines with Tim, particularly on days he was actively psychotic. We’d literally draw a timeline with the activities of the day on it. When he found a “hole” in his memory, I’d fill it in (or his teacher, as he did that at his therapeutic school as well) and circle it. After several months, it was easier to see where the psychosis kicked in and what it did to his memory.

    We walk in two weeks in Milwaukee.

  2. hello
    hello.
    i just found your blog. so decided i should comment. im 19yrs old so not really an adult not really a teen. i was diagnosed with paranoid sz a few yrs ago. to me its been a nightmare and feel very much alone in it all. i just wanted to say that i think jani is very lucky to have all of your support.

  3. You said; “I think there are two different stigmas. I think adult mentally ill and mentally ill children face different stigmas”.

    ~ You’re so right. There are those of us who honestly “get it”. Who live with this on a daily basis. It isn’t just an environmental factor or a product of divorce or even any other number of reasons given that makes us different. We just are. And we struggle twice as hard as you normal people to fit into what you think we out to be.

    “Adults, desperately wanting to be accepted and live normally, who face the stigma of fear of what they might do”.

    ~ Instead of suppressing our desires to openly be ourselves because it doesn’t fit into the idealizations of what society believes to be “right” or “normal”.

    ~ “Children face the stigma over what they DO do. They face the stigma of an education and behavioral based mental health system that blames them for actions they can’t control, despite the fact that they try so hard for us”.

    ~ My daughter called me today. We live in different states. She told me that yesterday her dad had taken her to what she believed was a hospital, this behavioral modification place. She also told me they told her she was Bi-Polar.

    I can barely get her to talk to me, because she is so reserved and private, yet she does. She has started to open up to me quite a bit. She amazes me with her strength. How is it this place can label her this way, without her even telling them what is going on in her thoughts? Is she angry? Of course she is. She wants to just be heard. She is the second child of five. She just wants to understand her own confusion without being judged and labeled. But to be sent to a behavioral modification place, is not the answer. ~

    I walk in October 🙂

  4. What made me feel more comfortable around and less abnegation towards mental illness in adults was spending time in the hospital and seeing what it looked like. I didn’t feel safe with the other patients in the hospital, didn’t feel like it was safe to make friends and didn’t feel much in common with them but most of the adults had experienced unbelievable personal losses or hardship and would talk about them, an old man sat with his wife who spoke only gibberish at the table and told me his family had told him he should leave her but he had loved her since they were kids, and a violently psychotic man thanked me for asking how he was later, when he had calmed down. I respect those things and most of the time that bit of dignity is all I can give and try to offer as a better normal, as our bit of agreed upon reality.

    In these descriptions I can see what you mean about people not recognizing mentally ill children’s illness, and their cries for help as what they are. I’m sorry the medication doesn’t work better.

  5. In my life, I have faced both stigmas – what I might do, an what I have done. The meltdowns in school (Schizoaffective, Sensory Processing Disorder, Anxiety Disorder, Autism Spectrum, ADHD), rages (Schizoaffective – Bipolar part), breaking into sobs over things most kids just shrug away (Schizoaffective – Depression part, Anxiety Disorder), self-injury in the classroom (Schizoaffective, Anxiety Disorder, Sensory Processing Disorder), isolating myself (All of it), screaming that others can read my mind, lashing out in a response to the pain, fidgeting (ADHD), not knowing how to act around the others (Autism Spectrum), running out because of the noise (Sensory Processing Disorder), and so forth. Those are the actions I am stigmatized for. Then there is the fear others hold for what I might do. Homicide, beating them, manipulating them, school shootings, and so forth.

    Stigma is a horrible thing, something that has led me to think about ways out many time. I understand your concern for lack of services; however, I would take poor treatment over stigma any day. At least than I would be supported.

    Note from Michael: You are supported. You need to get your support from those who don’t stigmatize you and screw those that do: Easier said than done I know.

  6. Seeing your child suffer
    As a mom of a child with schizophrenia I see my child suffer all the time.Some time the meds work then some times they don`t.I wake up each morning wondering if today will be a good day. And about 60% of the time its okay at first. Then i get the call from school saying that my daughter “Is off the chain”(there words).The school system here just can`t handle her. They keep telling me that she has a behavior problem and that I need to spank more. I just wish for one day they can walk in my childs shoes and see the world like she does.

    Note from Michael: “Off her chain…” Lovely choice of words. It sounds like a horrible school. It is awful that mental illness in a child is punished as a behavioral problem. One of the things that we want our in the works non-profit to do is to provide education to teachers about working with mentally ill kids. I would love for you to join our private online parental support group. I can tell you all of us have experienced what you and your daughter are going through: http://health.groups.yahoo.com/group/parental-support/

  7. Amazed.
    Beautiful Blog. I am just. Absolutely. Enthralled by your family. You and your wife are incredible. And Jani and Bodhi are beautiful!

  8. Thanks
    I just watched your story tonight and I wanted to thank your family for having the courage to share it. I have worked with children with autism and seen first-hand how hard it can be. I so admire the amazing dedication you have as parents to both of your children. I’m sure your family’s story will inspire and encourage many families.

  9. Awe-inspiring
    Hello,
    I will keep myself from getting caught up in too many words because I have seen (very breifly-on the DH show) how much your time is limited to speak and eat and think for yourself let alone read others thoughts; you and your family are awe-inspiring. As a young adult who has dealt with metal illness since I was a small child I find great inspiration and hope in your story. There are no words to describe how I felt about seeing your story other than you are miraculous people dealing with a miraculous disease. I wish I was better with adjectives but, somehow, I hope you can feel it through my comment how deeply your family has touched into my own life and how much I commend you and your wife (although you probably feel that it is nothing out of the oridinary or special-you are simply dealing with the life you have and making the best of it)
    Seeing such a brief peek into anothers lives has never touched me more deeply-I will continue to follow your families story by way of your blog and send you positive thoughts and wishes for the negative moments you may come across.

    Thank you for sharing your story.

  10. Amazed
    I waited anxiously to watch your program on Discovery Health after seeing the previews for it several weeks ago – and I was not disappointed. I actually watched it twice in a row, I was so fascinated with Jani. Not only is Jani an amazing creature of God – a child who obviously has a strong spirit and will to live and thrive despite her psychosis – but the two of you as parents are amazing. I find your strength and courage in the face of the unknown to be refreshing. While this obviously is not an easy journey for you, it is awesome that you are doing whatever you can to keep Jani home with you and to make her life as comfortable and successful as possible.

    Thank you so much for sharing Jani’s story. I will definitely be following this amazing site and will be letting everyone I know about your family and story. Schizophrenia in general is widely misunderstood and stigmatized (along with every other mental disorder under the sun). I hope that this site and the honesty you possess will enable others to realize this is not something to fear – but something to conquer with bravery.

    I have been touched so deeply by your story – thank you.

  11. [quote]The fog of war means you can’t trust anyone because anyone who doesn’t know you thinks to themselves that they could do a better job if only they were Jani’s parent. The fog of war means that your allies, the mental health care system, looks for weaknesses in you, not your child. Because you they can fix. They can’t fix your child.[/quote]

    This. Very much this. This is my life with my son. There is no way to understand at all unless you are there, unless you live life in that war zone. I think professionals become frightened when they don’t have answers, and look to the stereotypical answer: the parents. Part of living in this war zone is growing a very thick skin and realizing that therapists and doctors are only shooting in the dark, just like I am every day.

    Many years ago, someone with good intentions passed along a story entitled, “Welcome to Holland” that is supposed to encapsulate what having a child with special needs is like. I read that story and sobbed: our life was nothing like that peaceful but different place. No, our life was a war zone that we all survived every day. So even other parents of special needs children don’t understand, either. Being a parent of a child who is mentally ill is the biggest challenge I have ever faced: I hope I am strong enough.

    Note from Michael: Kathy, are you aware of our private online support group for parents of mentally ill children? http://health.groups.yahoo.com/group/parental-support/. It is completely private and membership is approved by me only. All information, messages, posts, etc are available only to members. I hope you join. At least you will find there are lots of other parents in the war zone too.

  12. Amazing
    I just was introduced to your story via Discovery Health last night. Since seeing your amazing little girl i can not get her, or your family, out of my mind. What you have done/ are doing for her is stunning and I hope you all realize that on a daily basis.

  13. Hi,
    I just watched Jani’s documentary from Psych week. I was just wondering if the doctors put any weight on her giftedness playing a role in the challenges she faces? Often the more gifted a child is the more intense the emotions and reactions can be. She is a beautiful girl and I hope she finds her way. I love that you said she was meant to be here and you would do it all over again. I sent a prayer for your family. I have found this site for parents of gifted children extremely helpful. http://www.hoagiesgifted.org/
    Take Care,
    DT

    Note from Michael: Yes, they have acknowledged it, but this isn’t simply a case of a gifted child not having her needs met. That is what Susan and I thought for years and what we used to excuse her deteriorating state. She is gifted, there is no doubt, but she also experiences hallucinations that command her to hurt herself and others.

  14. This is also a helpful site.
    http://www.sengifted.org/
    We also experienced trouble with intense emotions and the school not knowing what to do. I know you probably are at the point of nausea from people who aren’t there with you first hand to experience what you are going through, and I do understand that their is family history to weigh in the facts. I just wanted to send you a hopefully helpful hand through these sites in the hopes you might find yourself another silver lining through this.
    Take Care.

  15. WOW!!
    I have a child with short gut syndrome, Autism, depression, and he is moderate to severely def on his left ear and moderately def in in right ear. He is the middle child out of 3. Even though he has mental illness and other disablilaties we still discipline him, as I watched the show I noticed that you all let your daughter get away with anything she wanted. Even though she has a mental illness it is your job to teach her what is right and wrong and to still enforce discipline. Of course she is going to be overbearing even on medication because you all let her get away with it, you have to have boundaries with her. She needs a good butt whooping Yes that’s what I said, and shes need boundaries. Not someone who is going to let her run the house just because of a mental illness.

    Note from Michael: Wow, indeed. Clearly you know nothing about psychosis. Jani is well aware of the difference between right and wrong. She does what she does because SHE CANNOT CONTROL IT. That is psychosis. And I sincerely hope that you do not punish your autistic and depressed child for things he can’t control.

  16. Please stop saying
    I’ve read some of your writing since seeing the Discovery Health documentary. Several times I’ve noticed you referring to “autistic people.” I’m writing to ask you to please stop saying this. It’s offensive to me and many other family members of people with autism. Our children/siblings/grandchildren/nephews/etc are more than autism. Autism does not define who they are and describing them as “autistic people” implies that it does.

    I’m actually surprised that, as a parent of a child with mental illness, you do not use people-first language. Surely you think of your daughter as being more than schizophrenia. She’s smart, beautiful, funny, and many other things. Do her (and all other children with disabilities) a service by using people-first language.

    Thanks.

    Note from Michael: I will try, Erin, but I think the lack of services are a far bigger problem than how people are labeled.

  17. Thank you for your honesty
    I am not the parent of a child with mental illness, but I suffer from mental illness myself. I suspect bipolar, and suffered from extreme post partum depression.

    My walk through mental illness has taught me a lot about others. In discussing your situation on a debate forum, I was struck by how few people are willing to acknowledge the severity of the stresses on your family.

    I know only how poorly I handled the stresses in my life, and now I strive to share that experience with others so they know they don’t have to struggle in the dark, to fight alone, and think they’re by themselves. I tell the tale of how I tossed my daughter across the bathroom (thankfully into a pile of dirty clothes, so she was not injured) out of sheer rage and anger, frustration and stared at her in horror as I realized what I had just done. And continued screaming, because I couldn’t control the rage. What I experienced was a blip next to Jani, but it helps me to understand her, a little. I didn’t want to hurt my daughter. I knew it was wrong, but in that instant… I couldn’t stop.

    My heart breaks for you. Your strength amazes me, as does your candid discussion of your own failures and weakness. That, my friend, is worth any amount of struggle to share. I’m sorry you have received criticism, but in sharing your story, you HAVE helped others. There is no question about it.

    I will continue to follow your family’s story, and will pray that one day you will truly have the support you need.

    I suffered for a long time with my PPD untreated, because of lack of resources. I cannot get my suspicions about my other problems confirmed or denied because of this, nor can I get treated. So I suffer, and hope.

    I am thankful for your family that you have insurance; even as much of a failure as it is, it exists, even though it will not give you the care she truly must have, it it better than nothing. Maybe one day, we can win the battle against the corporations who control our health care.

    Note from Michael: The criticism doesn’t bother me anymore. It comes with the territory. Yes, I have made mistakes but I have also taken steps to rectify those mistakes. I know that feeling well of doing something violent and looking at that awful look on your child’s face as you realize what you did. You would cut off your arm to take it back, but you couldn’t stop. I thank God everyday for my Lexapro, which treated my violent tendencies. If you don’t have insurance, med companies do have programs to provide meds for free. You just need a doc you have a good relationship with. If you don’t have one, email me and I may be able to help.

  18. Watched Jani’s story on Health Network last night
    What wonderful parents you are! My brother is 55, diagnosed with acute schizophrenia at 15. Shock treatments, thermal treatments, multiple hospitalizations, refusal to take his medication during which time he was a danger to himself and others in our family… I have been there. On Thorazine, then Haldol, which eventually and very slowly led to his stabilization, now on Resperidine. Auditory hallucinations stopped in his forties (he was still on Haldol so not the result of new medication). Mother noticed other people stabilizing in midlife. By stabilize, I mean auditory hallucinations cease and a more normal lifesstyle is possible. This does not effect the underlying illness, just the outward psychotic episodes. But it is a huge step forward. Hoping and praying for newer medications and breakthroughs for your daughter and others. I do wonder if he psychotic episodes can be effected over a long length of time? My brother did not respond to medication for 20 or more years; then the same medication he was on (Haldol) seemed to work. Heartbreaking to see such a young child suffer with this disease; it is difficult enough to witness in teens. God bless you and your daughter.

    Note from Michael: Yes, I have heard of that happening where medications that do not work for years suddenly start to work. I suspect it has to do with the brain completing its development so the anti-psychotic no longer has a “moving” target so to speak.

  19. Watched Jani’s story last night on Discovery Health. My brother was diagnosed with acute paranoid schizophenia at 15. He endured shock treatments, experimental thermal treatments. My parents could not accept the prognosis. He refused his meds, often becomimg a danger to himself and our family. In those days, it was easier to commit and rehospitalize. It is very diffult now. Time seemed to change the nature of the disease. After 25 years on Haldol (he had tried other meds, but Haldol was not a new med at the time he stabilized) his auditory hallucinations and psychotic episodes ceased. He still has disordered thinking and he still has the chronic symptoms of the disease. I wonder if, over a long period of time, the disease progresses to the point where the hallucinations cease? Will pray for better medication to help your daughter. I no longer believe in a cure. God bless you and your family; you are wonderful parents.

  20. Just watched Your family’s story on Discovery Health!
    Wow where do I begin. I first saw the story on Oprah and now on DH. Michael and Susan you both are Amazing Parents!!! What a Blessing to your children! I deal with mental illness in my family but never had to address it in a child. With adults it is challenging enough but I haven’t had to as of yet with a child. I just wanted to tell you both how wonderful and brave your whole family is and I will be keeping up with you via this website and the blogs. Praying for all of you and understand that you have to take it day by day and hour by hour.
    Blessed Be
    Melody

  21. i am the mother of an 11 year old boy who has been diagnoses with autism/phychosis n.o.s. i want to find some kind of on line support group that i can share thoughts and feelings with other parents who completly understand this thing i dont even think i fully understand.please help

    Note from Michael: None of us completely understand. We are all just trying to do the best we can. I will send you an invite but here is the link: http://health.groups.yahoo.com/group/parental-support/

  22. Watched your show for the first time today. Was amazed to see that someone is willing to share their struggles and truimphs over childhood schizophrenia. My son was diagnosed with early onset schizophrenia at age six. He will be sixteen in two weeks and I was amazed to learn that we are not the only family to be dealing with such and encompassing illness. Most people we come across who do not know my son see a beautiful all american boy so when he has what we call a meltdown it shocks them and I receive some really dirty looks because they assume I am a “bad parent”. I applaud you for sharing your family’s story with the world. I am also interested in chatting with other parents with the same concerns and issues. Again kudo’s for you and special prayers.

    Note from Michael: Misty, let me invite you to our private online support group. One of the most gratifying things about the media attention is that it has allowed to bring others together who thought they too, like us, where alone until they saw our family on TV. Now the number of parents of “rare cases” like Jani in our support group is approaching 100.

    http://health.groups.yahoo.com/group/parental-support/

  23. January has one big factor going for her, a high IQ. If, as she grows up, she is able to develop her talents despite her grim disease and prognosis, this will work strongly in her favor. Having a good teacher and/or good home schooling is beneficial. Having a good therapist that believes in her and her ability to overcome her psychosis is as essential as medication. As she matures it is really important that she not become identified with her diagnosis or that can become a source of what they call, “secondary gain”
    The famous novel, “I Never Promised You a Rose Garden” which describes the work of Frieda Fromm-Reichmann with a schizophrenic teen who lived in an imaginary world and was able after intense work and many hospitalizations, is a hopeful book. As I watched January’s story I could not help but be impressed with her intelligence and your total dedication to her recovery. It is possible. There are many of us out here who recovered and went about their quiet successful lives melting into the ordinary world free of stigma.

    Note from Michael: We do our best but everything has to come from us. Neither Jani’s school nor her therapist can do what you advocate for (and I agree). Both are muddling along as best they can but for how long I don’t know. I go back and forth. On the one hand, I want her surrounded by people who recognize how special and wonderful she is and yet I also want her to be able to deal with some normal stressors of our world (which includes clueless individuals). So it is a matter of walking a balance. We are down to less than an hour of special ed school now and I have little doubt that we will soon be homeschooling. My hope comes from the fact that one of the first goals of the Jani Foundation will be to establish a day school for children who suffer from psychosis and other mental illnesses, with staff who recognize what these kids can offer and teach to their interests. I want to show Jani the world, not hide her away or let her and kids like her waste away in special ed.

  24. Services vs Stigma
    I have an older sister who became psychotic at the age of 50. After leaving her husband of 20+ years, she moved to be near me. She had no job, no money, no one else. I watched her struggle paranoid hallucinations/delusions/psychosis for over a year. No one wanted to talk to me – I was not a parent, child or spouse. I was only her sister. I found a wonderful advocate and teacher through NAMI. Ultimately, I became my sister’s guardian. Then, I was able to become my sister’s voice. I am in agreement with you that the need for services is essential for establishing the well-being of our loved ones with mental illness. If we cannot access the medications, therapies and treatments that persons with mental illness need to give them relief from their symptoms, the issue of stigma is a moot point. Jani, for example, is not old enough to even realize stigma. When our loved ones are in the vaccum of psychosis, getting them relief from their symptoms is paramount. Until mental illness is considered a health issue just like diabetes, heart disease or cancer, we will be fighting to educate and advocate for these services. It is infuriating that as a nation, we can be so advanced in knowledge in so many ways and yet still so primitive in how mental illness is viewed. I will keep up with your site because I am very excited to see the developments with the Jani Foundation.

  25. Michael: I am schizoaffective and have dealt with auditory hallucinations for quite some time now, but they rarely command me to do things. I want to commend you on your exemplary parenting skills. I am currently writing a book detailing my journey through my mental illness. Has anyone ever offered to write a book about Jani and her journey? I just thought that would be something that could not only educate others about childhood schizophrenia, but would help ease your financial situation and the costs of her treatment. I would love to contribute in some way; just let me know how. I’m also an RN, although my only nursing experience with psychiatry involved geriatric schizophrenics and Alzheimer’s disease.

    May I ask what medications Jani is currently taking? I am taking a new antipsychotic called Saphris. I wondered if maybe Jani’s doctors had tried this med out yet with her…it has done wonders for me.

    Again, I want to commend you and your wife on Jani’s care; she is so lucky to have you two!

    Blessings, Michelle

    Note from Michael: Yes, Saphris was tried but had no effect on Jani. Or rather, it had an effect we didn’t want. It removed the hallucinations to some degree but amped up her lack of impulse control, causing the same out of emotional control response Jani had to Abilify and Zyprexa. Unfortunately, none of the “atypicals” have worked for Jani, which is common in children. The hope is that as Jani gets older and her metabolism slows and her mind finishes developing that the atypicals will then have more effect and can replace the “typicals” of Clozapine and Haldol.

  26. Keep on fighting!
    I’m just here to say hang in there! I am a 23 year old woman, about to graduate from UC Berkeley with honors and two degrees. I was diagnosed with Schizophrenia when I was 14 and was in and out of hospitals throughout my teens. I know what it’s like to be torn between two worlds and to see your family torn apart and to have no control over any of it but there IS hope. The right medicine can make a huge difference. I know your daughters case is severe- but time may help. Some people can learn to live with delusions and function in society. Please e-mail me if you need to talk. When I look at your daughter I can relate so much what it’s like to be in her shoes- to be caught in that place trying to balance. I will live with this for the rest of my life but I am still going places, making friends, living life. So can she. Have hope.

    Note from Michael: Thank you, Bhan! Your story gives me a lot of hope!

  27. Hi Michael,
    This is more of a comment/question to a current comment. I see so many simularties in your story of Jani to my gifted child who the current school system also has no valuable place for. From the constant movement before birth (so much so that a very successful doctor close to retirement made the comment of he has never witnessed a baby move so much), the alertness seen in ultrasounds, the constant movement after birth, the lack of needing sleep. When I saw Jani at school I also saw my child at her age under the table. School became extremely frustrating for him. After 3 years he could no longer handle the boredom, the frustration of wanting to learn SOMETHING (as he told his principal, which he spent many days being sent to for blurting out answers, correcting the books, tapping his pencil, etc. etc. etc.) It seems there is a lack of resources in school to deal with anything not typical. He was given a box of harder work and told to go do it alone in the corner. That was their only answer. He eventually started leaving the classroom and exploring the great outdoors to be found in the middle of the field one day by himself (a big no no for many reasons). The lack of resources and total lack of knowledge put him there. I pulled him from school and started homeschooling as it was the only acceptable option (the other being special ed, special ed for a child with strait A’s that correctly points out that his 3rd grade science book’s periodic table has the numbers wrong, a child that has proven a lot of times to know more than the teacher knew about what she was teaching). People took him as defiant because of their lack of training with working with not your typical child and treated him as such therefore creating emotional problems. I know we can’t fix all the problems with our current system but I agree with you something has to be done for kids who just don’t fit through no fault of their own. There needs to be more requirements for ALL special needs training. Our teachers need more teaching and I know it’s rediculous to even say this but our school’s need more funding in a day and age when everything is being taken away. It seems hopeless. So I homeschool. I too wish there was a place for my child in the system, but I have to make do for now. It is so much work and it takes up all my time but the joy, the return of his spunk, the excitement of learning I see from my son now repays me. I was just wondering if you have considered homeschooling her until you have another answer?

    Note from Michael: I’ll go you one better. We are actually trying to start our own school. It is true that special education has never addressed Jani’s brilliance. They only focus on the “behavioral problems.”

  28. Interstingly enough, along with all the simularities I have already stated my child also had a vivid imagination complete with his own planet, underground laboratories, and an army of kids. It was so elaborate that I started to wonder if he really thought it existed. I asked him one day and he said he knew it was made up but he enjoys it. I would love hearing his stories of what his “men” were working on that week. Was it something to help with the C02 he was so worried about in real life? Was it a robot to attack his older brother’s army which were trying to steal his secret plans? With all the trouble he was having at school, all the teachers who started making me believe there was something wrong and different about him, I began to wonder if there truly was something wrong. Why didn’t they see the child I know him to be? Why these reactions at school that we just don’t see at home? I took him to the psychologist who, thankfully, seeing him carrying his beloved dictionary into the office and hearing about his worries for the planet, knew right off what was happening. He was gifted. He told me here are your options you can medicate him to slow him down to fit in the classroom, or, if you have the time and you can handle it homeschooling is the BEST option. That was an answer that was acceptable. Our days our filled with regular curriculum and extras according to the interests that day. Our weekends are filled with trips to the musuems meeting scientists which he seems to find more exciting than a trip to Disneyland anyday. It is a full time job, but it is so worth it. He doesn’t have to sit in a classroom repeating what he already learned the first time. He doesn’t spend his time in the principals office. He’s laughing, he’s learning, he’s so happy again. I can’t help but see the simularities with Jani. At the age of around eight he started to leave his imaginary world behind. I was very sad about that one. I so loved hearing his stories. I never in a million years would have even thought about homeschooling but in our case it has become a option that was much needed. When Jani was comparing herself to other children and saying that she is a bigger number than them I can’t help but think she’s probably right about that one. They are smart enough to realize they are different from the rest. Grown ups seem to reitterate that to them in so many wrong ways. I know it’s just my opinion but I really think she would benifit from helping her see what is SO RIGHT about that mind of hers. She is gifted, along with the other issues. You’ll be lucky to find very many people who have the education within our current systems to even recognize what is really going on. Even if you do where are the resources to help these kids? Our brightest minds. You will spend your time hearing what is so wrong and different about behaviors which can be attributed to being gifted. So wrong because the system is so wrong for them. It’s so peculiar that so many different diagnoses symtoms mirror other diagnoses. Anyway, I hope that you find some of this helpful for Jani’s future. Find those positives about that mind of hers and make sure she knows that part of herself and what can be so right.
    Take Care.

  29. Thank you
    Hello Michael, I was familiar with Jani’s story on a basic level and gained an entirely new understanding after watching the Psych Week special on Jani. I am amazed at your willingness to share your family’s “life story”, daily struggles and triumphs.

    I work with adolescents with all kinds of mental illness. They are all inspiring, smart, challenged and unique individuals. I feel fortunate that you have allowed (the collective) us into your lives and shared your “story”.

    I am thrilled at the development of The Jani Foundation! The goal of opening a school, wow.