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Our Finest Hour

For a long time, we fought against Jani’s schizophrenia without knowing what it was. By the time we knew what it was, by the time we got a diagnosis, it felt like it was almost too late. No matter what medication we threw at it, it kept advancing on her, taking her mind. The spring and summer of 2009 was our desperate attempt to check its advance.

 

It was probably June of 2009 where we started to turn the corner. Getting the two apartments allowed us to protect Bodhi, thereby removing the schizophrenia’s primary target. By giving Bodhi and Jani their own apartments, it ensured that Bodhi would not grow up afraid of Jani. And he hasn’t. We have kept him safe.

 

It also reduced Jani’s stress by removing the target of her schizophrenia that she couldn’t resist.

 

The next turning point came in July of 2009 when Jani started Clozapine. Clozapine can have miraculous effects against psychosis, if the body can take it. Jani’s could. Clozapine didn’t make the hallucinations completely go away, but it started the process of bringing Jani back. It gave her personality a chance to re-emerge out from under the psychosis.

 

Eventually, we had to add the Thorazine back again. Thorazine, the oldest anti-psychotic, is the atomic bomb. For a short time, it obliterates the hallucinations and disordered thinking, allowing Jani to be herself.

 

We fought long and hard to develop an education plan that would work for her and, thanks to the Newhall School District’s willingness to think outside of the box, we have succeeded. Jani’s current teacher, a really cool guy, is amazing me with tales of Jani’s intellect, intellect I thought had been destroyed by her disease.

 

All in all, we, and those who have helped us like Dr. Woodall, UCLA, and the Newhall School District, and yes, even Jani’s old therapist (before she left), have been able to give Jani some semblance of a life back. The schizophrenia and its weapon psychosis is still there, but we have settled down into a cold war. On occasion the illness shoots at Jani’s life in our world from across the border in Calalini, but overall the Army of Calalini is holding. It is still a huge part of her life. It always will be. But she, and we, are learning to live with it. Jani is growing up despite her illness.

 

But all this has not happened by chance or by accident. It has happened through tireless advocacy on the part of Susan and myself. If the war against the schizophrenia is the main war, we have also fought countless proxy battles with various service providers, the most recent of which was against the Santa Clarita Child & Family Center.

 

We refused to give up on Jani and refused to give up on her having a happy life, and so we have fought anyone who we perceived as standing in her way.

 

Unfortunately, it is difficult to fight two wars simultaneously. You can do it, but you end up doing neither very well. Even in World War II, US policy in the Pacific was to contain Japan’s further aggression while the US military focused most of its energies on Nazi Germany.

 

Let me tell you a little story:

 

Hitler’s armies invaded Poland on September 1st, 1939, which led to Great Britain and France declaring war on Germany. Hilter unleashed the “Blitzkrieg” or “Lightening War” that slashed through Poland in weeks before turning west through the Low Countries and France. The Blitzkreig was a perfect tactic for these nations, nations that had no sizable natural obstacles to the speeding German Panzers. The  conquest of Europe was complete in late June 1940 when the British were forced to evacuate from Dunkirk. In less than one year, Hitler had taken over the almost the entire European Continent.

 

With the fall of France, Hitler was now free to turn to his attention to Great Britain, but England, unlike the previous countries the Nazi war machine had rolled through, presented a fairly significant natural obstacle: The English Channel. It was never Hitler’s plan to invade England. All he really wanted to do was to take England out of the war so he could focus on attacking and overrunning the Soviet Union, referred to as “Operation Barbarossa.” Many of Hitler’s top generals tried to talk him out of attacking the Soviet Union. Most, including Hermann Goring, the head of the Luftwaffe, wanted Hitler to cross the Channel and invade England. Even in mid 1940, Hitler’s generals had no doubt that the United States would eventually enter the War and they felt it necessary to remove Great Britain as a staging area for the Americans whenever they finally entered the war.

 

There is a myth that Hitler was afraid of water. This isn’t true. Germany invaded Norway after all, which required them crossing the Baltic. Hitler didn’t want to invade England because he didn’t think he had to. His goal was to destroy the Royal Air Force, gain control of the skies of England, and bomb London and other British cities so badly that the British people would force Churchill to sue for peace with Germany, thereby living Hitler free to focus on the Soviet Union. Goring, despite having personal doubts that the Luftwaffe was ready for the RAF, assured Hitler that his Luftwaffer fighters would wipe out the RAF fighter command and that constant raids by German bombers would quickly break the British people.

 

The Battle of Britain began in July 1940, with the Luftwaffe engaging RAF fighters and destroying airfields and aircraft factories. Initially, things went well for the Germans. In early September, a German bomber drifted off course and dropped its bombs on East London. The British retaliated the next night by bombing Berlin, a small attack which killed only ten Germans and none of the RAF bombers made it back to England. However, Hitler was so furious that he directed the Luftwaffe to start bombing population centers of England, namely London. This was the beginning of the “London Blitz,” eight months of nearly nightly bombing of British cities and population centers.

 

Hitler’s kneejerk reaction to a handful of British bombs falling on Berlin had an unintended consequence. It took the pressure of British airfields and allowed the RAF to rebuild and re-arm.

 

Still, through December of 1940, the Luftwaffe dropped over a million tons of incendiary bombs on London with a loss of only one percent of their aircraft to British guns.

 

The truth was the RAF was woefully outnumbered by superior German forces and the British War Cabinet had little defense against the constant bombing.

 

Churchill desperately needed the United States to enter the War. He begged Roosevelt, knowing that England could not withstand this assault forever. Roosevelt was sympathetic but knew that the American people would not support a declaration of war on Germany. He did what he could, sending weapons and supplies, only a handful of which made it across the Atlantic due to German submarine attacks.

 

England had no hope of surviving, let alone winning. In the Fall of 1940, it must have looked pretty bleak to Churchill. Another leader might have told his people to prepare for life under German control, that the only way to ensure the survival of Great Britain was to surrender.

 

But he didn’t. Instead, he used the only weapon he had: anger. Specifically, the anger of the British people. He fanned their anger against Germany through his oratory, turning the simple act of survival into an act of defiance. He made the British people feel that by simply surviving, by enduring the Blitz, they were in fact fighting back against the Nazis. Rather than assuring the British people that the end was near, he did the opposite, telling them to prepare for a long war. He gave many powerful speeches, but perhaps his finest was this one, of which I have included the final paragraph:

 

But if we fail, then the whole world, including the United States, including all that we have known and cared for, will sink into the abyss of a new dark age made more sinister, and perhaps more protracted, by the lights of perverted science. Let us therefore brace ourselves to our duties, and so bear ourselves, that if the British Empire and its Commonwealth last for a thousand years, men will still say, This was their finest hour.

 

I have been asked several times in the past few days, after writing my last blog, why I do what I do. Why do I publicize what is technically a private matter between me and those who are supposed to provide care to Jani? Why not go through the “proper channels?” Indeed, Jani lost her therapy exactly because we did publicize this battle with Child & Family Center, so why persist? Wouldn’t we be more likely to get the services we need if we kept our struggles out of the public eye? “You can get more flies with sugar,” Jani’s therapist once told Susan, “than with vinegar.”

 

Winston, dear girl, would disagree.

 

The simple answer is that those who ask those questions have never been in this battle before. None of them have special needs children, mentally ill or otherwise. From their perspective, all they see is me vilifying individuals who I perceive as failing Jani and, I suppose, they worry that they one day will be the target of the same wrath of another irate parent. They worry I am setting a dangerous precedent. Dangerous for them, perhaps.

 

Because these people forget that Jani is not unique. Jani is not only severely mentally ill child out there. As I have said before, there are well over a hundred families in my online support group with mentally ill/autistic children, and more keep coming everyday.

 

And every single one of them tells a story of their children being abandoned by uncaring “professionals” because they were too severe, be they psychiatrists, psychologists, teachers, social workers, whatever. It is not that they, or we, are shocked that the system fails to help our children. We are long since beyond that. What shocks us, what angers us, is how easy it is for some “professionals” to simply turn their back on our children and throw them to their fates.

 

These people who question why I do this forget that this blog doesn’t exist just for me. It is a beacon of light to every parent, every mentally ill child, every mentally ill adult, who feels like their caregivers don’t give a damn about them. My experience is meant to be educational, It is meant to remind the thousands of others out there across the country that they don’t simply just have to sit there and take it.

 

Medical, psychological, and educational professionals don’t like it when you challenge their power. Some manage to overcome this and some don’t. And not all of them need to be battled. Many are wonderful people who truly are committed and will do whatever it takes.

 

But part of my job is to remind parents that they have a voice. No one will ever fight for your child as hard as you will. After all, it is you and your child living under the continual bombing, not them. You have to do whatever it takes to get your child what you feel he or she needs and if that means you bruise a few egos in the process, so be it.

 

Those of you who question my motives keep thinking that I am only seeking care for Jani. If I was, this blog wouldn’t exist. As I have said before, it is not enough that Jani gets what she needs if Mari, Maddox, Logan, Brenna, Ailish, and Anthony don’t.

 

You see, if I stay silent, if I go through the “proper channels,” the flaws in the system will never change. Social change only happens because the those fighting for it make it public. The Civil Rights Amendment happened because of television. The fight for equal rights had been going on for years, but it wasn’t until the average American saw the images of peaceful protestors getting hit with water cannons and attacked by dogs that they understood what was really happening in the American South.

 

This blog is my act of defiance against a system that denies basic civil rights to children (and adults) with mental illness, that can treat them as if they have no value to society.

 

So what happened to Britain? Well, the nightly bombing failed to demoralize the British people. Eventually the Luftwaffe began sustaining heavier losses because the RAF, although badly outnumbered, fought them with a tremendous ferocity. And for the British people, they ferociously kept coming out of the bomb shelters every morning and returning to pick up the pieces of their shattered lives. They refused to give in.

 

By May 1941, the Luftwaffe had failed to gain air superiority over the UK. Spitfires still ruled the skies. And the British people were as determined to fight on as ever.

 

So Hitler ended the Blitz. Never again would the Luftwaffe bombers be a significant part of the war.

 

And in December 1941, the United States finally entered the war.

 

These blogs are my dispatch from the War Cabinet under London, encouraging you to keep fighting, because I know that eventually, America will enter this war with us.

 

No matter how bleak it may seem now, please know this: One day, our grown and happy mentally ill and autistic children, free to live their lives in a society that values them, will look back on this day and say this was our finest hour.

 

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27 comments on “Our Finest Hour

  1. Jani lost her therapy exactly because we did publicize this battle with Child & Family Center

    there are well over a hundred families in my online support group with mentally ill/autistic children… And every single one of them tells a story of their children being abandoned by uncaring “professionals” because they were too severe

    You know, I suddenly wonder if the fear of negative publicity is really why Jani’s therapist dropped her. Maybe it wasn’t that at all, or at least not entirely; maybe it was just their excuse. You said yourself in this same entry– “Medical, psychological, and educational professionals don’t like it when you challenge their power.” Rob over at Schuyler’s Monster has talked about “red flag” parents, the ones that some teachers hate because they’re TOO educated, TOO willing to fight for their children, no matter who they’re fighting against. I’d say you qualify.

    Keep fighting the good fight, and damn the naysayers.

  2. And if there was a Purple Heart to be given, it would go to you and to Susan. You guys have helped unite a nation of parents like me, who suddenly realize we are NOT alone. Nor are we deficient parents. Nor should our kids be sent to residential placement as if they are disposable!

  3. Thank you
    Thank you for sharing your thoughts with us all, Michael. This is a beautiful post. The children of the world need more advocates like you and Susan who keep pushing until their mentally ill children are provided with what they need.
    Strength, fortitude, vision and determination are wonderful on their own, but when they are bound by love, anything can happen.
    Thank you, again.
    Cheryl-Anne

  4. um, the [u]simple answer[/u] is that there would be no blog if jani was given the services she needed in the first place…i don’t think jani’s therapist left because her name was publicized. she left because she didn’t give a rat’s bum about jani. comprende?

  5. Speak it!

    What amazes me over and over and over again as I blog about the mental health system and its failings is, most people have NO IDEA. None. I tell people that the mental health system is about 10% effective as the rest of the health care system, and for children? About 10% as effective as that.

    Of course, I pulled those numbers out of my ass, but from what I can see, it’s about right.

    If you are quiet, and if all the rest of us who are writing and talking about this are quiet, then people will just go on not knowing. The system of care for people with mental illness can just go on being criminally inadequate because no one is shining a light on it. Our kids deserve better.

    There are no disposable people.


  6. I hope it all works out for Jani and you guys.

    If you click on my name it will take you to a youtube clip where Jani spontaneously sings a song about her visual Voices. She sings:

    “They come at 6 and stay till midnight. I wanna know all of em named starlight”

    It’s unlisted now, but I’d like to put it on the youtube channel for Jani fans, channel4jani (see video).

    I would also thank and link to Will Stenner’s video where I found it. Would this be OK, as it looks like he got it from you?

    For the legions of Jani fans, one of the most interesting things is watching her on videos giving her “first person accounts” of her life with SZ. In fact, an Oxford Journal called the Schizophrenia Bulletin publishes a first person account every month.

    When she was talking to Oprah outside, or that 20/20 guy about Wednesday, that’s basically a first person account, and she is very good at it. It’s very interesting to hear her describe her interactions with the world of Calini.

    Note from Michael: I don’t mind and I am sure Will wouldn’t mind either. Thank you, Ken, for continuously reminding all of us that Jani has a voice as well. 🙂

  7. When I was 15, I was in a program at my high school for mentally ill teenagers. After a year of being there, I was kicked out with the explanation that I was “too severe”. My parents never fought for me. Therefore, I had no voice. I’m 21 now and to this day I still want to fight back against them. Thank you for giving us a voice. I wonder what these “professionals” thought they were getting into when working with mentally ill children? These are their JOBS. Jobs they CHOSE. It amazes me how they decide to pick and choose cases they wish to deal with.

    Note from Michael: Kate, most people lack courage. They chose this job because they had some interest and thought it would make them feel good about going something good. But doing good in the world is not just a 9-5 job. I think these psychologists discovered that their job is harder than they thought. It isn’t like in movies where you tell somebody everything will be alright and it is. Helping mentally ill is hard work and it takes guts and love. Most people, I now realize, don’t have these qualities, especially not when the chips are down. I now only respect those with a backbone to stand up, to put their own careers on the line.

  8. After reading Kate’s post & Michael’s response…I must say that I wish that everyone in any human service field would think of this on a day-to-day basis (it’s a paraphrase – and I have no idea who said it in the first place, but I love it and I say this to all of the incoming employees where I work):

    You leave work everyday, and you get to leave your mistakes at the door. You go home and your family knows no different. You are unaffected. These kids that you work with, they will take your mistakes home with them. These kids and their families will pay the price for your mistakes.

    I find that to be so profound.

    I believe that there should be a 101 course for anyone who will be working with people…that makes that statement the crux of the matter. This is no small deal. This job is important (and very difficult…and very rewarding). I realize that many parents are not thinking about, “what happens at age 21?” They are just trying to get by…day be day, but I know that kids (very quickly) go from the world of entitlement (AKA the educational system) into a world where they must fight for open spots (AKA adult placements). If there are two dayhab spots open, but 7 people are trying to get in…guess who gets those spots. Well, it isn’t the worst behaved with the fewest skills, that is for sure. At least here in NY, agencies that place adults get to pick who gets in. When I sit down and think about that, I can become a bit overwhelmed. People’s futures are in my hands. I know, not mine alone…but I play a part.

    I’m not sure how to infect anyone else with this attitude other that to keep saying, “You leave work everyday, and you get to leave your mistakes at the door. You go home and your family knows no different. You are unaffected. These kids that you work with, they will take your mistakes home with them. These kids and their families will pay the price for your mistakes.”

    So…for now…I guess I’ll just keep saying that…every chance that I get.

    Note from Michael: Thank you, Lori. Keep saying it. There are great psychologists and human service workers out there, people who understand they hold the life of a fellow human in their hands, that this is more than a job. There are those who earn their stripes. And then there are those like Jani’s therapist, who has so little courage that she would cut a little girl loose.

    But she’s still got the Lexus, and that’s the main thing. I guess Child & Family Center pays pretty well.

  9. Re: Jani’s Song
    I know nothing about music from a technical POV, but I bet an established artist might be able to make a serious video using Jani’s lyrics. Something that would explain Jani’s alternate universe. Maybe on the order of Kate Bush’s Wuthering Heights. (But without all the screeching). The Disney animation of Alice in Wonderland comes to mind too.

    I notice that Jani’s recitation could be put to the music in the Incomplete video. I think Jani could write the complete lyrics to a pop song. Maybe she’d need a little help.

    Just a thought.

  10. Jesus Christ can heal Jani
    The cause of Jani’s illness is not physical but spiritual. She’s being oppressed by evil spirits.

    I have shown videos to a Christian friend and she was absolutely certain, as I was, that Jani was oppressed/possessed by evil spirits.

    Doctors and “experts” have failed to heal Jani, but what is impossible with man is possible with God. Put your faith in Jesus Christ not with man.

    As for driving out evil spirits by using the name of Jesus Christ it is written in the new testament. Acts 5:16 “Also a multitude gathered from the surrounding cities to Jerusalem, bringing sick people and those who were tormented by unclean spirits, and they were all healed.”

    In Acts 8:7 “For unclean spirits, crying with a loud voice, came out of many who were possessed; and many who were paralyzed and lame were healed.”

    In Acts 16:16-18 “Now it happened, as we went to prayer, that a certain slave girl possessed with a spirit of divination met us, who brought her masters much profit by fortune-telling.”

    “And this she did for many days. But Paul, greatly annoyed, turned and said to the spirit, ‘I command you in the name of Jesus Christ to come out of her.’ And he came out that very hour.”

    The apostles reported others, not of their group, who were also invoking the powerful name of Jesus, but Jesus does not rebuke them:

    “Teacher,” said John, “we saw a man driving out demons in your name and we told him to stop, because he was not one of us.” “Do not stop him,” Jesus said. “No one who does a miracle in my name can in the next moment say anything bad about me, for whoever is not against us is for us” (Mk. 9:38-40).

    It says in the Bible there is indeed spiritual warfare going on for the minds and souls of men and women.
    ” For we do not wrestle against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this age] against spiritual hosts of wickedness in the heavenly places.” Ephesians 6:12

    I have been attacked by an evil spirit while sleeping. I woke up with an evil spirit sitting on top of me choking me to death. During sleep paralysis I have seen evil spirits as dark shadows – darker than the darkest night – and I would feel the most intense evil presence. I know it wasn’t my imagination because I’m not that imaginative 🙂 I have a friend who is trying to get into God’s Word and walk with God and she tells me she feels like evil spirits are trying to hold her back. She’s an UC Berkeley graduate on her way to Med School so she’s not a brain washed, uneducated person.

    The truth is Satan will try everything to keep everyone including you away from the Truth. He wants everyone to go to hell with him when God judges the world in the end. The Truth is Jesus Christ. Jesis said himself “All authority in heaven and on earth has been given to me.”

    He also said “I am the way and the truth and the life. No one comes to the Father except through me. John 14:6

    Take it as you want it.

    Note from Michael: And I do. As I said in my response to your previous comment, you call it the Devil, I call it schizophrenia. As far as I am concerned, it’s the same thing. My reply to you would be that just because something comes from science doesn’t mean God had nothing to do with it. How do you know that those working to treat mental illness aren’t doing God’s work? After all, are we not vehicles for God’s will? You are assuming that just because doctors don’t lay hands on a child and put them through the traumatic experience of an exorcism that they are not doing the will of God. It is arrogance to assume you know what God wants. Jesus Christ is healing Jani. He is healing Jani through the hearts of those who care about her and other children like her.

  11. It never ceases to amaze me what length that the mental health community will go to to save it’s reputation. In doing so sacrificing the people who more often than not need it most.I’ve seen people in severe psychosis turned away from mental health facilities.At my worst point I was turned away because I wasn’t crazy enough. My best friend was too crazy. So it seems to me unless you can peak enough interest to be seen but not so much that it’s scary you are pretty much just screwed.

    I think what they are doing to Jani is criminal it has to be against some kind of law to dismiss a mentally ill child based on the fact that her parents aren’t stupid and won’t go along with what they want to say because they are to lazy,proud,or incompetent to go out and find the right answer.What are they afraid of ? That they won’t be good enough ? Or that they may actually have to look outside the dsm?

    You keep on singing,we’ll catch the chorus and at some point we’ll get so loud that they’ll have no choice but to listen.

  12. Adults Fighting For Services Also
    If it weren’t for the few people who do write blogs such as these, few people would ever realize that the mental health system is not picture perfect. As another person said, this blog probably wouldn’t exist if Jani received all the services, in their highest quality, that she needs.

    When I began to experience my first psychotic episode, I thought that getting help would be as simple as going to the doctor and saying, “It hurts here,” then receiving the services to treat the pain. Instead the response from doctors can sometimes be something closer to “It hurts right there? Okay, let me treat this other part over here,” or “Pain from that location is out of my area of expertise but good luck in finding someone who can provide better help.”

    I was 20 when I first had to seek help. I’m 22 now. The first year, I was hospitalized 11 times. By the 6th hospitalization, my original psychiatrist decided to lie to me and tell me that my insurance had dropped me and she couldn’t see me without insurance. Guess what…my insurance never dropped me or even told her they would change the way they were paying for my services from her. Turned out, I wasn’t making enough progress…I wasn’t improving enough. At that point, I wondered if that particular doctor had ever even treated a person with schizophrenia if she was so naive about the speed recovery…I now realize that she probably just wanted to see easier patients.

    My second psychiatrist ended up being one of the good guys. At first, he provided little help because, as he later told me, he felt that my chances of improving were non-existent. At my last session with him, he told me that when he took a moment to remember that I am a real, intelligent human being…he realized that I had wonderful chances of improving but I needed a doctor who could see that. If he hadn’t have needed to move out of the country, life would be much easier.

    That was 4 months ago. It took 4 months to find a new psychiatrist (who I see later this month) because the others in town didn’t want to take me when they found out that I have schizophrenia…that I am considered disabled by this illness. Excuses were made…”we try to just focus on helping kids,” “we didn’t realize before that the client load is full,” “we are really only equipped to deal with more minor cases of mental illness.”

    Recently, I had a psychotic episode (first since Sept. 09) and was declined admittance to a psych hospital…for what reasons I’m not sure. Without a psychiatrist, I was left to rely on myself while I was delusional and hallucinating much more than I typically experience. I also admitted to being suicidal and was still told that I didn’t meet criteria. I suppose only actual dead people meet criteria these days?

    I’ve learned that I must fight tooth and nail to receive the services I know that I need to function. With schizophrenia…it is extremely hard to stay on top of your own treatment. When you can’t, you are often taken advantage of…your services removed or declined. It is a harsh reality that no one should have to face.

    Who deserves more treatment than the people who struggle to obtain treatment…even when they want it? Who deserves more treatment than those who are willing to fight for it but don’t have the means to “win” the “war?”

    What does it say about the mental health system when whole groups of people can demand better services for an individual…and that individual still be denied those services? What exactly are the severely mentally ill and their caretakers supposed to do?

    Note from Michael: Thank you, Katherine, for reminding people that this isn’t just about Jani, us, or the Santa Clarita Child & Family Center. Thank you for reminding people than this problem doesn’t just affect us.

  13. Just letting you know
    I’ve been following your blog for a while now…absolutely in awe and fascinated by the battle you, your wife, and Jani fight every day. Your story has inspired me to pursue a career in fighting that battle with you. Currently, I am in college majoring in Neuroscience to make that possible. One day, I will be the one to fight with parents just like you, just as hard, and for just as long, because I couldn’t imagine simply giving up. I wish you the best and would like you to know that every day I am inspired by Jani.

  14. appauled
    I by no means want to toot my own horn but I have to say after following your story for awhile I have to say I agree that educators are front line fights. I am a special education teacher and know the real deal. Those of us in it to work with children with special needs take the lumps to reap the rewards. I know we serve two masters: children and the school system. I know I need to walk a fine line but I also know MOST of my parents ARE uneducated about their childs education or rights. I have lost my job twice for standing up for children and parents. I wish more parents took a stand like you have.

    You don’t always need money and things to serve a childs educational interests. Educators and parents need to be a teammates not on teams.

    Good luck to you. Remember there are those of us out there that want to put in the time to fight the fight by your side. I come home exhausted each night from dealing with students and supporting parents each day.

    Your families vigor lets me know it’s worth it all. Thank you.

  15. Jani
    Dear Michael,
    I think that what you are doing for jani… the life you are giving her, is a great gift that she will not fully understand untill she is older. I saw tht she went back in to UCLA not to long ago… what brought that on, and what did they say?… I just think you have a wonderful family. Jani is a great kid!!!! KEEP ON ROCKING!!!!! 🙂

    Note from Michael: That was back in June. She has been home since late June. She went back because she was trying to hurt herself. We wanted to see if there was any medication that would be more effective than thorazine for her and it turned out now. However, since July she has been doing very well and is now approaching one of her longest periods out of the hospital. I am amazed.

  16. Michael and Susan,
    I just watched January’s story on the Discovery channel. I am the step- mother of a 21 year old who was diagnosed with Schizophrenia at age 7. In watching your journey I was reminded of my own. My son had visual and auditory hallucinations starting at age seven. He might have had them before age 7, but that is the age when I met him. He was hospitalized every three months for three years.My son was often violent and when he sister was born, we had her sleep in our room, with alarms on the doors. Now today at 21 he has received weekly psychologist appointments, monthly psychiatric appointment’s and an in home therapist.He works full time on food servce as a caashier at a local hospital, finished high school, went to culinary school through a junior college. Once we found the right mixture of medications, he has been somewhat stable for 9 years. He still has delusional thinking, can be paranoid, and has some hallucinations, but he is able to live a somewhat regular life. He has overcome so many obstacles, and will porbally live with us through his adult life. I understand your struggle and your courage, and want you to know I now work in the behavioral health field due to my experience.I speak to first year medical students at the university about what it is like to be family member with someone who struggles with this illness. Without this life lesson, I would not be who I am.

    Keep up the hope!

    Note from Michael: Thank you, Amy.

  17. January’s Schizophrenia
    My mother was Schizophrenic from age 25 till her death. It can be the most frustrating disease for a lot of reasons. I recognized some of the medications that Jani is taking. Recently, I read that about a connection between Schizophrenia in a baby and low vitamin-D in the mother. Maybe it has to do with brain development in the womb. Jani’s dad said Jani seems to be better in the summer. Maybe, just maybe, that is because of the sun and a vitamin-d connection. I would have Jani’s vitamin-d checked and if low have her prescribed a vitamin-d supplement.
    Best Wishes to your Family

  18. sorry to tell you this….
    But your child DOES NOT have schizophrenia. You MUST get second and third opinions. I believe the doctor that diagnosed her is in it only for the publicity. Guess what? No schizophrenia, no publicity. I believe you and Susan feel that way too. Stop indulging Jani’s hallucinations and fantasies. Have a funeral for all the imaginary friends. Recondition and reprogram her brain to NOT see things. And how much of this is put on? I saw on a show where she said she was bringing along her friend Sunday, an invisible something in her hand, because the day was Sunday. Really? Can schizophrenics manufacture hallucinations at will? I think she has some controllable condition, such as classic ordinal-linguistic personification (OLP), which is a form of synesthesia/synaesthesia, which is a generally harmless neurological condition. But guess what? That won’t get you a book deal or a second shot at Oprah. Your child is too engaged to have schizophrenia. You also have her on way too many drugs. The sad part is that it seems as if her problem was caused by two overanxious parents who didn’t want to deal with her not sleeping so you just kept stimulating her poor little developing brain to no end. You also were trying to teach her too hard. All the numbers and colors and days of week and animals when her brain just needed to rest and grow just made it go haywire. But it didn’t cause schizophrenia, and you two need to be investigated along with that rock star doctor.

    Note from Michael: And you are able to say Jani doesn’t have schizophrenia having never met her why exactly? I wish her brain could rest and grow. And you really think only one doctor gave Jani a diagnosis of schizophrenia? And you think schizophrenia only comes in one form and everyone who has it has the same symptoms. Many schizophrenics are very engaged (of course, you are also seeing her on medication, which invalidates your argument-she doesn’t engage when not in medication. And the publicity is wonderful. It means I have to deal with people like you. Finally, I hate to break it to you, but your not the first person to try and tell me Jani doesn’t have schizophrenia. You certainly haven’t ruined my day. I am very comfortable in my choices and my knowledge. Have a nice day.

  19. Youtube diagnosers
    The nerve of these people. Never met this girl and then come up to contradict doctors and specialists because they saw a few minutes of your daughter on television. One has to be absolutely deluded to think one knows better on base of a few minutes. If you want to diagnose a person dear “pook” the absolute minimum requirement is that you meet the person at least a couple of times and have personal interviews. A few tests would not hurt either. “Recondition and reprogramme her brain to not see things”. I think that says it all. This person has absolutely no idea what schizophrenia is. It’s not something a person can control if he wants to. Because then there would be no schizophrenia anymore. You think there is a choice involved here which is a fundemental mistake. I think the only one who needs investigation for paranoia’s,poor assumptions and delusions is a certain “pook”.

    Give these people a break they go trough their financial and personal limits to keep their daughter safe. The last thing they want to read or hear is people who think they can medically diagnose from behind a computer screen. They are to me two fantastic parents for doing so much for their daughter. Loads of schizophrenic people get neglected by their enviroment because the family does not know hot to deal with them. These parents do their utmost best to keep their daughter with them and in safety. So I can only give them my fullest admiration and compliments.

    Note to Micheal. You will encounter a lot of people who will not understand this mental ilness neither will they understand it’s implications. For it’s very hard to understand for the common man. But you are doing a fantastic job and all people who know what schizophrenia is and what schizophrenias does to a person know you are doing a great job. I hope you will never give up this battle for your daugthers health and her wellbeing. But you have to much honour to give up this fight I’m sure of that. I’ll leave you with my favourite inspiration:

    “Every day you may make progress. Every step may be fruitful. Yet there will stretch out before you an ever-lengthening, ever-ascending, ever-improving path. You know you will never get to the end of the journey. But this, so far from discouraging, only adds to the joy and glory of the climb. Never give up.
    One ought never to turn one’s back on a threatened danger and try to run away from it. If you do that, you will double the danger. But if you meet it promptly and without flinching, you will reduce the danger by half. Never run away from anything. Never give up. Never!”

    Winston Churchill

  20. you’re amazing
    Dear Michael,

    Have just watched the Discovery special on your precious Jani. I cannot even begin to imagine what you go through each day to keep your daughter safe and happy, and to keep yourselves strong enough to make it through another day. The closest I have come is to help a friend with her bipolar daughter….and I know how challenging that is, and it’s a disorder that can be fairly easily controlled. So I can only try to understand what you and your wife deal with daily. While there are some unbelievably negative comments on here, I think you know that most people, like me, believe that you and Susan are two wonderful, caring, loving and dedicated parents. You are to be commended. Jani is an amazing and beautiful little girl. My heart breaks for her and for you. I want to let you know that I will pray for all of you every single day. Thank you for sharing your story, it most definitely humbles me as a parent. Please know that people care and I for one am praying for a happy ending to this story. Hugs to you all. Kelley

    Note from Michael: Thank you, but there already is a happy ending. We are standing by Jani and all of us, including her, are learning to live with her illness.

  21. Hey Michael
    I’m just going by what the Bible says. Have you read the Bible yourself, especially the 4 Gospels and the rest of the New Testament? There was healing and driving out of demons done in the name of Jesus Christ.

    Mark 16:17-18 ‘And these signs shall follow them that believe; In my name shall they cast out devils; they shall speak with new tongues;’

    ‘They shall take up serpents; and if they drink any deadly thing, it shall not hurt them; they shall lay hands on the sick, and they shall recover.’

    You don’t believe she is demon oppressed or possessed, fine. But please put your faith in Jesus Christ to heal your daughter of her ‘illness’. Get on your knees and pray with faith in the name of Jesus Christ to heal her. Through experience I know Jesus Christ does heal.

    Have faith in Christ,
    God Bless

    Note from Michael: Reading the Bible alone does not make you a Christian. Spouting lines out of a book put together by the Romans at the Council of Nicene, where the bishops picked and chose what Gospels made it in, does not make you a Christian. What makes you a Christian is to carry out Jesus’s work on this earth. Jesus wasn’t a preacher. He was a doer. He spent his entire life with the downtrodden and the suffering, working to end that suffering. You can drive out what you call “demons” but it isn’t a quick fix or a matter of laying on hands and praying to Jesus. It is about doing what Jesus would do. It is about showing kindness and compassion and working to improve the lives of those that suffer. There is no quick fix. Do the work of Jesus. Live as He did. Don’t just spout lines because the lines don’t matter. It is your actions and what is in your heart that matters. As I have said before to others like you, you have no idea what my belief system is. Just because I don’t wear it on my sleeve doesn’t mean I don’t believe. My faith is my own business.

  22. Thank you for your insight.
    I am an aspiring ‘professional’ having completed a degree in psychology and about to start work in child protection services. By making your fight public you and other parents are helping me to learn what is really important in this position, to avoid the traps of egos and accolades, and to listen to the people who are just trying to get what they need from these services. After all Churchill also said ‘Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen.’

    I also just wanted to say that I think that Jani has the strongest parents imaginable.

    Keep going guys, the message is getting through.

  23. Where are you? hoping everything is all right!:)

    Note from Michael: Hi, Lisa. Yes, we are doing okay at the moment. I haven’t written a new blog lately because I really haven’t had anything to report and I am also under deadline for my book. Things are still a challenge but Jani has been out of the hospital now for four months (her longest stretch since she first went to UCLA in January of 2009). There have been a few times where we thought she was slipping and would have to go back but I have been amazed at her ability to pull it together. Right now she is doing incredibly well. I’ll try to write a new blog soon.

  24. You are so blessed to have a diagnosis!
    An early diagnosis of schizophrenia means EVERYTHING! Keep fighting for Jani. And keep fighting for yourselves and your son, and any other children you might have.

    My son is 31 and a schizophrenic. I cannot begin to tell you how frustrating it was in our home state, Illinois, as well as living in Texas, to try to get my son help. He had been tearing holes in the wall, encopretic with a stool fetish, and showed signs of delusions from an early age. He was a danger to himself, to his older sister, and eventually to us.

    Until he received treatment at Chicago Lakeshore, doctors and teachers in schools alike blamed me. One so-called expert would say I was too loving, the next too cold. As it turned out, I was fine, just struggling.

    We did not get a diagnosis of schizophrenia, which we long suspected, until 1995! That was only because our attorney used a well-known expert in child custody, and had all of us evaluated.

    Just prior to this, my present husband and I slept in shifts to protect ourselves. My ex-husband suddenly wanted a relationship with our son, and we frankly needed a break. Our son was knocking holes in the wall, tried to kill each of us more than once had ritualistic behaviors, putting his feces in plastic bags in his dresser, and “feeding the house” by putting food in the furnace as well as the holes in the wall.

    The ex sent our son back to our area on a Greyhound bus. He was found wandering the terminal, unmedicated for at least 48 hours. He accused us of “breaking” our son. He had no legal standing as my present husband adopted our son. But he made a big to-do. We sent our son immediately to in-patient care, and hired an attorney.

    The whole thing ended up being put before a judge, with DCFS (child protective services) pleading that we were at fault for abandonment- after 8 hospitalizations! Department of Rehabilitative Services would not help us. He stayed a ward of DCFS for two years, only because we had a fabulous lawyer. DCFS never admitted fault, but put him in no less than 6 placements in a year and a half. One of the foster parents in a placement died under mysterious circumstances and he was suspected. DCFS eventually sent him to live with his father of birth, who promptly put him in an apartment by himself and expected him to handle his own affairs. The ex’s theory was that we were “babying” him by giving him medication and trying to have him committed.

    Our son was convicted of assault and battery in Arizona and spent 2.5 years in prison. I was able to send the warden his records. Arizona got him into a group home, but sometimes he escapes. He has SSI, and even though highly intelligent, works in a sheltered workshop. Any contact has to be through a third party. It is not ideal, but Arizona has better laws than any state where we’ve lived regarding actually helping the mentally ill. Our son is mostly safe, we are mostly safe, and the people in his community are safer.

    We exhausted any savings we had dealing with our son and his condition, and went into bankruptcy at one point. Please do not feel you are begging because you ask for PayPal donations. You don’t have much of a choice, and anybody in your community should be grateful you ask. What you are doing is very long-term, but very good for all concerned. Hang in there! We don’t always have the $$, but we will try to help you, as we have been there and done this. We know it is big bucks. We would consider it an honor to assist somebody else in this journey of litlte choice.

    Note: Wow. An incredible story that so illustrates the failures of the system. Would you be willing to call in by phone as a guest on our Bipolar Nation Radio show. Whether you use your name is entirely up to you but you have an incredible story to tell, particularly about how critical early intervention is. Feel free to email me at michaeljohnschofield@me.com.

  25. early diagnosis a blessing!
    I am not sure my first comment got posted, but please continue to fight for Jani, and also for yourselves, you son and any other children you might have.

    I am the mother of a schizophrenic, who was not diagnosed until he was 16, after 8 long term hospitalizations, a court fight, and Department of Children and Family Services sticking their big nose into the mix. Until our son was 11, I was blamed as his mother. I was too cuddly, too cold, too clingy, too strict, too progressive, too everything. It took a great attorney and a better psychologist to make things start to happen.

    My husband and I don’t have much, but having been here and done this, we would be honored to try to assist you.

  26. Well behaved parents rarely make history
    I saw the TLC program last night and have been up ever since reading about your darling Jani, and your valiant effort to get her the care she needs.

    While my children don’t have schizophrenia, they both struggled with epilepsy and developmental challenges. I fought the schools tooth and nail to get them to see that trying to stick these children in their square pegs of public education was doing a great disservice to everyone, especially my children. I had one school district psychologist diagnose my son as ADHD by having read his file…. for crying out loud. And in the meeting with the school and district officials, I told her exactly what I thought of her ‘expertise’.

    My youngest son was misdiagnosed for years before I could finally get someone to pay attention. It is never fun being viewed as a ‘red flag’ parent but I could care less. PARENTS are the only ones who know what their children really need. And always remember, that well behaved parents rarely make history.

    The mental health care system in this country sucks – but it is especially devastating for children like Jani. You keep on doing what you’re doing and those of us who see and feel your reality will always be in your corner.

    🙂

    Blessings to you all this Thanksgiving. I’ll be following your blog and foundation, and donating whatever I can, whenever I can.

    Note from Michael: Thank you. I am getting used to being a “red flag” parent. I do wish they would understand that if it was their child they would do just as we do.

  27. Jesus Christ, the Son of God, loves you! As a matter of fact He loved you soooo much that He came to Earth and lived a sinless life and died on the Cross for your sins and if you Repent of your sins and accept Him as Lord and Savior, then you will be saved. Jesus loves you! 🙂

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