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Never See the End of the Road

Jani’s psychologist sees her at school now so I rarely get to see her (the psychologist).  But she happened to be there in the school office waiting with Jani when I arrived the other day to pick her up. I wanted to catch up, see how she felt Jani was doing, so the assistant principal took Jani into her office while I spoke to her psychologist.  I asked her what she and Jani were working on.

 

“We’re working on games, specifically on how to…” she glanced over at Jani, about twenty feet away, and mouthed “lose.”

 

I nodded. This is why Jani won’t play any games, and games on the playground are critical to socialization. “Well, I am open to any ideas you have. I’ve never been able to convince Jani of the old adage that it’s not whether you win or lose but how you play the game.”

 

“Well, to be honest, it’s something even regular kids have a hard time with,” she answered.

 

This got me thinking. When do when learn how to lose?

 

I congratulated her on the San Francisco Giants getting into the playoffs, which inadvertently continued the theme of losing. I thought about my own brief experience in Little League. I rode the pine for most of the season. When I did get to play, I was stashed in right field (because most hitters are right handed and tend to pull the ball to left field, the so called “hot corner” in baseball). When a ball was hit my way, I seemed to have this fear of being hit which would delay me coming in on the ball. Funny how at 10 years old nothing seems worse than being hit on the head by a falling fly ball. I still remember the only two at bats I got that season. My first at bat, I got hit in the head by the pitch, which, just like in the professional game, means an automatic walk to first base. My second at bat came two months later during the tournament. I faced the same pitcher. I never learned to time my swings or try to guess if the pitch was a ball or a strike. I just swung. And somehow I made contact and hit what is called a “comebacker,” which is a ball hit right at the pitcher. He followed his natural instinct, which was to jump. The ball shot underneath him and passed by the shortstop into the outfield.

 

A stand up double and an RBI. My only hit in my illustrious baseball career.

 

Personally, I never cared whether the team won or lost. All I cared about was getting through the game. I didn’t want to field. I didn’t want to hit. I didn’t want to play.

 

I have the vague memory that my Dad put me into Little League for that one season primarily to “socialize.”

 

I kept trying to remember when I had learned to lose. It wasn’t as a kid because I never cared about winning. I can count on one hand the number of fights I had growing up and I lost every one of them. I had a problem with punching another kid in the face. It seemed too harsh. So I went for the stomach while my opponents had no problem clocking me in the head.

 

Try as I might, I could not remember learning to lose when I was a kid. It’s hard to learn to lose when you don’t care.

 

It didn’t hit me until Jani and I were on the drive home.

 

I didn’t learn to lose until I was an adult.

 

Hope is like everything else. It’s probably inborn but also influenced by your environment. My childhood was not perfect but I never wanted for anything materially. My father earned a good living. I never had any doubt that I could achieve whatever I wanted. For me, it was more a matter of the desire to do so.

 

When I ran away from home for three months at 16, I accepted that I had to go to inpatient treatment in order to come home. I embraced that program because I had the desire, not because I really wanted to come home (because I didn’t feel it was my home) but because I knew it was the only way to get back on the road to anywhere other than death. I gave up drugs and drinking because I had the desire to get out and the only way out of Minneapolis, out of my home, was to be a functional human being and finish high school and go to college (all of which my father paid for).

 

When I decided at the end of my second semester at the University of Arizona to up and move to Los Angeles to be a screenwriter, I had the desire. I truly believed I could “make it.” Looking back at my arrogance in those early years in LA, it’s a good thing time travel is not possible because I would go back and hit myself in the side of the head. I had this unshakeable faith, if you want to call it that, that I would make it. I got good jobs but left them because I was convinced they would stop me from achieving my goal. I kept dropping out of college because I was convinced I wouldn’t need it. I let Susan support us and she did, apparently based entirely on my faith. And when my faith would falter, hers stepped up. In many ways, it still works that way today. It’s funny to read criticism of my treatment/portrayal of Susan in January First. Funny because first they don’t seem to realize the book is written in present tense, meaning it is a reflection of how I felt THEN. Funny because I read comments like “He criticizes his wife for a decision and then does the very same thing a few pages later, yet never acknowledges that [Susan] was right.” Which is true. I blamed Susan because it was easier than facing the reality that I was dealing with a problem I could not fix.

 

You see, I was losing. And I’d never lost before. I’d either won by default, by accident, like the time I hit that double in Little League, or simply continued to live in denial, thereby allowing me to keep from conceding defeat. If you think I am an asshole from reading the book, you would have DESPISED me in the early drafts. My assholeness was toned down at the request of my publisher.

 

Hell, I tried to kill myself because I couldn’t concede defeat. I’d never learned to lose.

 

It’s still hard. I haven’t won Jani back. I’m just in another form of denial that says that she will make it through the very hard challenges that remain. Either that or I have more faith in her than I do in myself.

 

I’ve never explained on this blog why I am now a life-long fan of the Angels.

 

The Los Angeles Angels of Anaheim, formally the Anaheim Angels, which is what they were known as in 2002. The fall of 2002 was the first time I had ever watched the MLB playoffs. This was back when Jani wouldn’t sleep unless she was held and we had no cable back then so I found myself sitting up night after night. And with nothing else to watch, I watched the playoffs. I watched the Angels mow down the Yankees with Jani in my arms. I watched the see-saw of the ALCS with the Minnesota Twins, torn in my allegiance because I had partially grown up in Minneapolis. But there was something about the Angels. Maybe it was the fact that they entered as the AL “wildcard,” meaning they were the underdogs. Maybe it was the fact that they had never been to the “Big Show,” let alone won it. Maybe it was that no one expected them to make it and yet every single time it looked like they were out, they fought back. Maybe it was because my brother in law bragged about getting access to  a sky box at Pacific Bell Park (now AT&T Park) which created in me a dislike of the Giants that I would not have already felt.

 

On October 26th, Game 6 of the World Series, the Giants were leading 5-0 heading into the bottom of the 7th inning. I was sitting in the easy chair, holding the sleeping Jani in my arms (or “Janni” as she was then known), waiting for the inevitable end.

 

After Giants starting pitcher Russ Ortiz gave up consecutive singles to Troy Glaus and Brad Fullmer of the Angels, San Francisco manager Dusty Baker pulled Ortiz for Felix Rodriguez, one of the best bullpen arms in the game. Next up to bat for the Angels was Scott Spezio. Jani started getting fussy and I was not paying attention as Spezio fouled off pitch after pitch. Jani suddenly cries out in her sleep and jams her arm out. I am more concerned with getting her settled down so it takes me a minute to realize the TV just got louder. At the same moment Jani cried out, Spezio hit a three run home run to put the Angels back in it. That was the turning point. They would come back to win Game 6 and take Game 7 for their first World Series.

 

Since then, I’ve always considered Jani, and not the Rally Monkey, to be the Angels true good luck charm. They should put her up on the Jumbotron down at the “Big A.”

 

Believing in destiny is a form of blind faith. It was what keeps you going through losing seasons. Jani is in a winning season. Bodhi? Up and down. The Angels? Well, they got eliminated in game 160 of the season when Oakland won their 92 game.

 

I can handle losing a game. I can even handle a losing season. That’s essentially what I tell my friends and support group members with special needs kids going through a tough spot. I don’t use those words exactly but I am essentially telling them that things will turn around. I am playing manager to a ballclub. I have to believe that every day we got a chance to win, even if it takes us all another ten or twenty years to go to the proverbial World Series.

 

Except losing in sports has no real consequences. The worst that can happen is you get fired. Then you get hired on by another team.

 

It’s not like that with special needs kids. I am starting to realize there isn’t always another team. I am starting to realize there won’t always be another season.

 

I’ve seen families, including my own, lose battles. But what I am beginning to see, because I have known some of these families for several years now, is the loss of the war itself.

 

And it kills me. When our story first became public, I would hear from families who had lost their son, daughter, brother, sister to mental illness. More specifically, to suicide, the most common form of death for the mentally ill. I would write back and promise them that their son, daughter, brother, or sister did not die in vain, that I would change things.

 

Arrogance?

 

Maybe. Maybe the reason I rail against NAMI and other mental illness non-profits is because I want to believe it is THEIR failure that these kids are dead. They didn’t do enough. They didn’t bleed dry to save them all.

 

Maybe it’s denial. There should be no casualties of mental illness because we have the resources to stop it. We have the money. It’s just not going to the right people. With enough people and enough money we could have an around the clock support system. Pretty hard to kill yourself if we never leave you alone.

 

And if I could do that, I would. If I could surround you, whether you are an adult or an child, with friends who never left your side, flesh and blood friends whose job it was to stand guard against the ones in your head who tell you to hurt yourself, I would.

 

If I could get every parent of a mentally ill kid to totally focus on their child, if I could drag people out of their house and force them to stand guard, I would.

 

But we come back to desire, don’t we? You will only do what you want to do.

 

I’ve watched mentally kids grow into mentally ill teenagers. Some of them are very nearly adults now. And it hasn’t gotten any better. There have been moments, yes, but the disease inside their brain still has the advantage.

 

And what terrifies me is I see death now. I see it everywhere, hiding in the shadows, reaching out its long fingers for these kids, kids who are getting closer to adulthood and the loss of their last true defenders, their parents.

 

I see some parents beaten down. Not giving up on their child or children, but realizing that the end of the war is coming soon and they are not likely to win before their child or children rolls over the age of 18.

 

And I get furious with them. I want to scream at them that it is not too late, that it is never too late.

 

But I don’t know. These are parents who have fought the war longer than me and parents who have fought a more difficult war than me. There is the other end of the spectrum of people who read January First and comment “That was so awful.”

 

Not by a long shot. There are FAR worse cases in the world, in your country, in your state, in your neighborhood, than Jani. Jani’s hallucinations are primarily benign. I have seen kids scream in terror. Jani is not suicidal. Jani is not really violent anymore. There is worse, much worse. Jani has schizophrenia and it is a challenge and I am proud of her for everything she has achieved. But she doesn’t have the worse case of schizophrenia I’ve ever seen. Not by a long shot.

 

I still tend to blame other parents for not doing what Susan and I have done (even if what we’ve done is impossible) because I refuse to accept defeat. I can’t lose. I never learned how. So it must be your fault.

 

But I can’t know that. I can’t know that anything you did or anything that I did really made a difference. I only want to believe that because I can’t just walk out of the dugout and into the tunnel because for some of your children, there will be no next season.

 

So I overturn the baseball bats. I scream at umpires. And, yes, I do get ejected (notice I don’t get invited to mental health events despite having arguably the most “famous” mentally ill child in America).

 

I’m “nice” when I have hope, when I have faith. When I start to lose that, I become the world’s biggest jerk. Anything to delay the end of the game, even if it gets me ejected.

 

So what is the point of all this?

 

I am scared of losing. I am terrified of it. I am terrified of the phone calls I am still to get, the phone calls telling me “_______________ is dead.”

 

I want to win the game. I want to win the Big Show. I know, I believe, we can do it. Collectively, if enough of us care, we can change this world, adapt it for these kids. We will make it.

 

But we won’t make it with all of our kids.

 

As much as I want to deny that, that is the fact. Dr. Martin Luther King spoke about the “Promised Land” and he acknowledged that “I may not get there with you.” He was right. He didn’t get there with us.  But he started us on that journey. We haven’t made it there yet ourselves. We are closer, but we haven’t made it.

 

So this is what I want you to do, whether you are a parent or a family member of a mentally ill child or someone who knows or works with mentally ill kids. The next time you see them, I want you to say something to yourself.

 

I want you to say, “That’s Dr. King.”

 

I pray for the time to help get your child to the promised land. But I may run out of time. We all may run out of time.

 

But whether your child makes it there or not, remember this….

 

They started the journey.

 

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32 comments on “Never See the End of the Road

  1. Thank you
    Thank you for not giving up or loosing. I’m a 29 year old mother of 3 who is bi polar. I was stable off mess for over a year till a recent car accident set me off. So many days I wanted to end it but I too don’t know how to loose… I made it through the dark moments and am slowly getting in meds. The stigma is what made me wait so long…
    Maybe we don’t know how to loose because deep down we want a fighting chance at life.. To try to beat it.

    Note from Michael: Kat, if you are on Facebook we have a fantastic private support for group for adults with MI. If you are interested you can email me at michaeljohnschofield@me.com

  2. Your post just made me cry. I’m glad you’re still fighting the fight for everybody that you can. P.S. Perfect song

  3. I greatly fear losing ___ ( my loved one). She’s the only close family I’ve ever had and this
    mental illness or whatever it is she has where she constantly hears voices has been a big blow to me.

    I feel comfort & hope when I read about Jani for 2 reasons: 1. the obvious, my loved one who constantly hallucinates and 2. Because I feel like a part of me is still like a child and I’m afraid to let go.

    Not to mention that she has a great dad that’s not only fighting for her but is being the voice for so many others, including mine & myself. There have been moments when I’ve felt s—l but when I read your blogs about Jani & your fight for her & others like her, I feel like I’m not so alone in this battle & I have a little more
    hope to go on & I just want to thak you for that, Michael.

    You may be angry & even mean sometimes (I don’t blame you) but you ARE making a difference. You are the Martin Luther King for human rights for the mentally ill. I wish you would run for Congress- you have a great voice & I know you would make better changes to the flawed NAMI & other orgs who are not being put to better use.

    Note from Michael: Sasa, we have two wonderful and completely private support groups for parents or families with children with MI (regardless of age). We have one in Yahoo and one in Facebook. If you are interested please email me at michaeljohnschofield@me.com. You are definitely NOT alone.

  4. I have faith too. People are becoming more and more aware of mental illness due to the string of horrific events in recent months. There are celebrities and politicians who are sharing their mental illnesses with the world. I believe this is only the beginning and we are on the right track. You have done an outstanding job of getting it out into public awareness and it won’t stop now. As these children grow there will be some (hopefully many) who will be outspoken advocates of repairing/overhauling the mental health services that have shrunk to nothing. I think, I believe, that this will be so good in so many ways that will stretch further than just saving lives.

  5. Amazing
    Wow, what an incredible blog!!!!!!!! We are all in this “game” together and we have to have hope and faith it will all be okay if we work at it every single moment.

  6. Tears
    This made me cry a bit. When I was a teenager and started experiencing symptoms of schizophrenia, I didn’t tell anyone. I was too afraid. I was afraid that my parents would be ashamed of me, and I was afraid that schizophrenia would mean not accomplishing the goals I had set for my college life and my future career. If I could go back in time, I would do my best to convince my teenage self that my parents would be my biggest supporters. And I would try to convince myself that schizophrenia is not a death sentence.

    You worry about what will happen when Jani becomes an adult. I worry about what will happen when my parents die. I’m 24 now but I require so much support from them. Very recently, my best friend moved 8 hours away. She was the last friend I had in town that had not yet moved away. She was a third of my support system…my mom and dad making up the other thirds. Well, I can’t forget my service dog…but he is a bit different.

    Anyways, parents. My mom is so good at helping me keep tabs on my illness. She tells me when I have a flat affect (bad sign for me) because I can’t tell for myself. She helps me learn social skills because it wasn’t until I was an adult that I was diagnosed with Aspergers…so I didn’t receive any help for that until this year. They help me financially. SSDI just does not pay enough. They visit me when I am hospitalized.

    They are in their 60s. They are in good health but I still worry. Who will visit me in the hospital when they are gone or too elderly to visit? Who will tell me that I have a flat affect. Who will I even socialize with when right now I’m struggling just to understand the concept of small talk? It scares me.

    This may sound terrible, but in some ways I envy Jani. She will have lived with schizophrenia her entire life…but she will never have a memory of you and Susan not supporting her. She will grow up and not be afraid that you are ashamed of her or that you think she is “crazy.” She will never doubt your love. My parents came late to the game. My symptoms started when I was a teen…but they didn’t find out until I was first hospitalized in March 2009. It took them a couple years to understand what I was going through enough that they could offer help.

    You learned to lose as an adult. I learned to lose when I was a kid and no one wanted to play with me. You never noticed defeat as you grew up. I never acknowledged the ability to win. I actually learned that after getting schizophrenia. I learned to see success because without it, without hope, I never would have made it past 2009.

    Sorry, I didn’t mean to make this comment so long. You just really made me think.

    Note from Michael: Nothing to apologize for. This is much appreciate, Katherine. I admire you. And to answer your question of who will visit you in the hospital when your parents are gone, it is my hope that by then we will have the support system in place that means if not, then people like us will be there to visit you. Other families. Because our kids are growing up. They are following you. And I admire you so much for giving me hope.

  7. Michael, words cannot describe the immense feelings that this blog bought out of me. Whether we win or lose, it does not matter–it is how we fought in the end. I am one of the few lucky ones who made it due to my parents–however, I always wonder how my future would be if they grow old; however, they are making new medications all the time, so at-least that is something to be positive about. I will see you guys in November–my mom swore to me, and I trust her. We are in Los Angeles for two days, so I have plenty of time to visit you guys for a day. We were in Los Angeles for only half a day at that time. This blog was the most well-written blog out of all your blogs–all were good, however, this was just incredible. I will never give up fighting my illness–and I am sure Jani will never–it is not whether we win or lose, but how we play the game.

    Note from Michael: Thanks, Ruben.

  8. I lost a friend to suicide exactly three years ago. I just read your whole book in one sitting. Thank you for being an inspiration to those who may consider giving up. Its never too late.

    Note from Michael: I am sorry for the loss of your friend.

  9. I love reading your blogs. They give me such inspiration. I e-mailed you about a week ago a bit, I don’t expect a quick reply as I know you are very busy, I just want to ensure that you have received it.

    Note from Michael: Yes, Kyle, I did. Thank you. I will respond as soon as I can.

  10. I need help with my daughters I.E.P. I read your book and you touched me. My daughter is 8 and is A.D.H.D./O.D.D/Sever Anxiety Disorder. I’m losing my mind with the constant phone calls about what she’s doing at school. When I read the book I felt the same anger with our school. I need someone to help advocate for Rylee. I’m getting railroaded, I’ve done my homework but am told her E.D. doesn’t give her special privileges. Not sure where to go now or what to do.

    Rylee’s Mom

    Note from Michael: We’re already in touch.

  11. I understand this not wanting to lose. I lost my child as you already know. I am working to win him back. I am going to university and doing well in my classes. I am being forced to lose something else that I fought so hard for. Jani is so lucky to have you instead of the parents my husband has. Right now the lack of understanding is more painful than the illness itself. How does one cope with that?

  12. Mr
    Having just watched the TV show in the UK for the first time, I may be mentioning things you know already but just in case you don’t, I’ll put them down anyway.

    Jani’s sleep problems when born, would have contributed to her condition and her brightness: Being awake means being aware and learning but the downside is that she wouldn’t have been grounded (Look up sleep deprivation and psychosis or dreaming (hallucinating) while awake).

    Food can help grounding. If she avoids eating that will stop her being as grounded as normal people are. Also fast foods and snacks, plus fizzy drinks will bring out hyperactivity in her as has been shown in ADHD. Likewise the countryside and animals are better at grounding people than the city and technical entertainment like TV and computer games.

    You have the right attitude to her imaginary friends. Acknowledging their existence and interacting with them, is better than fighting them (denial as it is known is psychiatric circles). A Dutch psychiatrist has started treatment, getting patients to communicate with their voices and treating them as friends, rather than trying to drug them out of existence: See Hearing Voices movement in UK).

    Bodhi and January are unusual names – are you aging hippies by any chance?

    Note from Michael: Nope. I’m 36 and Susan is 42. We were born LONG after the hippie movement.

  13. Fantastic Book
    I just finished reading your new book & I could not put it down. EVERYONE should read this book. Thank You for sharing your story. It has so touched my heart. May God be with you & bless you

  14. wow.
    Hi. I’m Julia, I’m 14 years old girl from Poland. Few minuts ago I watched a program on TLC about Jeni. For me, it’s amazing how you fighting for her. Your hope is incredible. I belive for her! Don’t lose hope!

    A lot of love and understanding
    from Poland, Krotoszyn!!

  15. Just finished book
    Good morning, I have just finished reading your book about Jani. What a touching story. You and your family have gone through a lot to try to help Jani. I hope your book helps others in similar situations. I have a sister born with birth defects and I understand now as an adult how much stress my parents went through. But in the end it is worth it. My sister is as “normal” as she can be and you will find the same with Jani with all of your hard work.

    Best of luck!
    Melanie

  16. Seek Christ
    Don’t know if this will post due to the religious nature, I watched the video on You Tube, and immediately thought that Jani was plagued by demons. Have you ever brought her to a Christian Church? A pastor who believes in Jesus Christ only? Have you ever considered praying to Jesus and having him guide and heal your daughter? Pick up the Word of God. I really believe she (Jani) is being tormented by demons. And she can be healed in the name of Jesus Christ, which all things are possible through him.

    Mark 5:1-16 They came to the other side of the sea, into the country of the Gerasenes. 2 When He got out of the boat, immediately a man from the tombs with an unclean spirit met Him, 3 and he had his dwelling among the tombs. And no one was able to bind him anymore, even with a chain; 4 because he had often been bound with shackles and chains, and the chains had been torn apart by him and the shackles broken in pieces, and no one was strong enough to subdue him. 5 Constantly, night and day, he was screaming among the tombs and in the mountains, and gashing himself with stones. 6 Seeing Yeshua from a distance, he ran up and bowed down before Him; 7 and shouting with a loud voice, he *said, “What business do we have with each other, Yeshua, Son of the Most High God? I implore You by God, do not torment me!” 8 For He had been saying to him, “Come out of the man, you unclean spirit!” 9 And He was asking him, “What is your name?” And he *said to Him, “My name is Legion; for we are many.” 10 And he began to implore Him earnestly not to send them out of the country. 11 Now there was a large herd of swine feeding nearby on the mountain. 12 The demons implored Him, saying, “Send us into the swine so that we may enter them.” 13 Yeshua gave them permission. And coming out, the unclean spirits entered the swine; and the herd rushed down the steep bank into the sea, about two thousand of them; and they were drowned in the sea. 14 Their herdsmen ran away and reported it in the city and in the country. And the people came to see what it was that had happened. 15 They *came to Yeshua and *observed the man who had been demon-possessed sitting down, clothed and in his right mind, the very man who had had the “legion”; and they became frightened. 16 Those who had seen it described to them how it had happened to the demon-possessed man, and all about the swine.

  17. Thank you for fighting!
    Michael, thank you for everything you and Susan, and others like you are doing to help people with MI. My stepdaughter always had so many problems but it was always the same thing “high IQ”, “she’s an only child”, “rebellion”…I tried and tried to get her help (she was 15 at this point) but other family members interfered. She never got the help she truly needed. Now its 15 years later, her father and I are raising her two kids and she disappeared years ago. My granddaughter (now 12) was diagnosed early onset bipolar at age 5 because I spotted the signs and fought for someone to help her. And I still fight because she is A) extremely intelligent B) does not show her rage outside the home C) getting people to stop being ignorant and stupid about mental illnesses. A teacher actually told the class that my granddaughter has to miss school because she is “mental”. You and your family do inspire me. I know Marissa has a long hard journey, but I plan on taking the journey with her all the way. Hopefully (soon) we can see changes in insurance, attitudes, schools, etc., and these kids can live a life they deserve.
    And maybe ignorant comments like the previous one about demons, however well meaning, just won’t happen anymore.

    Note from Michael: Karen, we have two online support groups for parents (or grandparents) caring for MI children, one on Facebook and one on Yahoo. Write me at michaeljohnschofield@me.com. Also, we can help with her IEP. What the teacher said is reprehensible (and illegal).

  18. More suggestions. You could try meditation when she’s old enough for it or religious retreats, unless her behaviour is too disruptive (very likely, I’d assume). You could try exercise to drain the energy she’s obviously full of, through running or maybe a sport if she was capable of team activity (Swimming or other solo activities could be tried as well).

    Music has been found to be very helpful in a lot of conditions – either learning an instrument or through singing (Tourettes Syndrome patients lose their tics and swearing outbursts / Alzheimer patients recover their memory and Stutterers lose their stutter, for instance).

    Has anybody asked January why her imaginary friends are all numbers and not names?

    So you’re not aging hippies then? Just the American way of using odd names to stand out that us British would be too embarrassed to do but it is changing here too, alas!

  19. watched both shows- January and January next chapter
    Frst of all I would like to say what a wonderful family and inspriation you are, the both of you. In the UK its very common for a lot of parents to say my child has and rattle off a number of conditions, when 80% of the time its just down to bad parenting!! You thought for your kids, to get them the right care, didnt just sit back and say yeah ok, and blame them for things going wrong, you helped them, and they are fablous kids and a great credit to you both. you should be very proud of them.
    There is something I would like to ask, how do you cope? i have 4 children, 10, 7, 4 and 3. im also married to the father of the youngest 2. My 7 and 3 year olds are both boys and both have problems. My 7 year old used to knock himself out when he was a baby, just sit there smacking his head on the wall, the mount of times we were in A&E was unbelievable, sadly they thought I was abusing him and reported me to social services, who realised i was not and closed the case, but no one helped me. He started school fine, and had no major incidents untill Reception class where they changed the plan for the day and he flipped out, he rammed tables across the classroom and it took a few teachers to hold him down. He is better at school cause he has a routine. He looses it at home alot cause i cant do a routine (i have bipolar and mobility issues-i have mafalan) it is like he has blinkers on, he sets his sight and thats it, you cant reason with him, he has no social skills at all! My 3 year old doesnt speak except the odd word but he knows his numbers- his favourite being 8 everything is 8. because i have my oen health issues i feel i am being fobbed off alot and an now stuck on ideas to help them….

    Sorry for going on lol
    love the names by the way. xx

    Note from Michael: Sounds like services for kids are no better in the UK than they are in the US. We have some online support groups for parents of special needs kids (one on Yahoo and one on Facebook). I am hoping I can connect you to another UK family who at least gets what you are going through. Email me at michaeljohnschofield@me.com

  20. New follower…
    I’ve just recently began following Jani and your family. I have to say that I think you and Susan are some of the most courageous parents that I’ve ever seen.
    The pain and struggle is evident in your faces; yet I see something that is rare to see with people that have such a crippling event in their life: Hope.
    Jani is so much more than a “mental case” and I hope that more people can see that.

    Note from Michael: I agree. That is what I am trying to show. She is a person. All people with mental illness are people.

  21. wow
    you’re a disgusting human being and i hope you get some retribution for the awful things you have done.

    you don’t STARVE and BEAT a child to “fix” her, michael. you just don’t. someone needs to kick you right where it hurts.

  22. Thank you for sharing your famil.
    I just wanted to say thank you for sharing your family with us. I have been following your story since it aired on Oprah and Dr. Phil. I finished your book in one reading. What an amazing story. I fight daily with anxiety and depression (which I take medication for). I have a 6 year old daughter who I have noticed is displaying some of the same issues I have and did as a child. This scares me and makes me feel responsible for her conditions as well. By reading your story I realize that I can’t blame myself but be strong for her. I too tried to kill myself when she was young but realized in the 12th hour that I would be leaving her alone in this world and that wouldn’t be fair to her. I know I won’t be here forever for her but if I can leave her a stronger person then I have done my job as a parent. Thank you again for being an inspiration for all those parents around the world that are struggling with any type of mental illness.

  23. I just finished reading your book…I started it last night and couldn’t put it down..finished it this morning. Wow…what an amazing journey you have been on and continue to be on. My daughter and her husband are foster parents and have adopted four children and have room for two foster kids in their house. I have watched over thirty children come through their house so far and many have had so many problems. It takes special people to be able to help these kids and deal with the many problems they face; we have had kids that cut themself, have severe autisum, have been sexually abused and so much more. The children they adopted are not perfect…two are special children who have many problems but like your book had in it…they are your children and you love them. My daughter could not have kids so God placed these kids in their life for a reason and they opened their home and hearts to them so you can not give up on them, you keep going and trying to find what it is that makes them as functioning as possible. Thank you for sharing your families story. I hope that Jani continues to have success and that you, your wife, and your son know what a blessing she really is. God Bless you and once again, thanks for letting others know they are not alone in their journeys with their children.

  24. Hearing Voices Network
    I don’t know much about your current situation, so I don’t know what you are doing to help Jani right now, or how she is doing. But I felt I needed to bring this up. I am sure it has already been suggested here, but I wanted to suggest you look into intervoice and the hearing voices network.

    http://www.intervoiceonline.org/
    http://www.hearing-voices.org/
    http://www.hearingvoicesusa.org/

    This is a movement working towards trying to understand peoples psychotic experiences, accept their interpretation of it, and put together methods of coping and recovery. They also have self-help groups around the world where voice hearers can talk. I am diagnosed with psychotic disorder NOS and while there are no hearing voices groups in my area, the people from these groups that are on facebook are very helpful to me. Repressing the experiences only made things worse for me, the same themes would come back in different forms. It was coming to an understanding of what was behind these hallucinations that led to my recovery. I am hoping, as this is what worked for me, that over time, if she were able to express what she is going through without judgment or labels like “psychotic”, “episode”, or “mad”, that eventually she will need less medication and will feel less of a need to act out.

    Note from Michael: We don’t repress hallucinations. We understand they are extremely real to Jani. I have even been criticized for interacting with them and treating them as they were “real.” But I oppose Intervoice and the Hearing Voices movement ONLY because they are anti-medication (which is why they get more support in Europe than they do here). Medication is a necessary component of treatment for mental illness. Encouraging people to reduce or get off meds is dangerous to them.

  25. Thanks for the inspirational postings. In a way, I feel kind of strange. My brother and I have struggled with schizophrenia, psychotic ideation and cognitive difficulties our whole lives. But, the rest of my family doesn’t believe it is a real family trait because they are materially successful. In fact, they don’t even think about it all. They will probably hide their great grandchildren when they come down with it. How can one win a battle when many people don’t even realize the battle exists?

    Note from Michael: Because they don’t want to admit that the possibility exists in them. Listen, Scott, I have never known a child (any age) with severe mental illness who didn’t have a parent with mental illness too. Perhaps not as severe but there. If your parents are not treating their own illnesses (and you can be materially successful and still suffer from mental illness-look at Howard Hughes). It is likely they are hiding from their own “demons.” Don’t worry about what they can’t do. Focus on what they can do and live your life. You and your brother.

  26. Go Team Jani
    Hello I would just like to say I think this is an amazing blog and often times we need to understand how to lose, but ultimately losing at life is not okay. I am glad you have not given up on Jani! She needs you guys so much and you have been amazing at continuing to help her. I have bipolar disorder and know all to well about the lack of available services and even the lack of concern people in positions to care show. (Jay Patterson) I read your post about your son and his loss of control when a routine or plan is changed and I feel like I should share with you this is one of my biggest triggers for the psychotic behavior associated with my disorder. Being 28 and aware of the disorder has forced me to limit the constraints and not overschedule things so I dont have to “freak out” if a plan falls through or changes. Though I cant always avoid it, I know it is a challenge I must face. I think with him being so young it will be hard to help him understand this concept but perhaps you can find a therapist that can help him at least communicate his feelings about the changed plan in a less explosive way. Be patient with your child, I know people sometimes look at my behavior like it is within my realm of control,like Im an overgrown brat being child like and throwing a fit, though I dont try to make excuses for it, but when the Light switch is flicked the flood of anger and rage is powerful and explosive, and though I will feel bad for the behavior afterwards it like it cant be contained at the time. Knowing what Im facing has made it easier, but it has isolated me. Im less social, I want less stimulus in my life because Im afraid of what might happen when the next episode starts. I have been hospitalized and miraculously survived a xanax overdose just after my diagnosis. Many people in my life still do not understand and rather than trying to make them I just try to do my best at not going back to the black hole that wants to take my life away. Mental illness is hard but it is very real. I had the minor symptoms of the disorder throughout childhood and my teenage years. It wasnt until age 25 when I experienced a traumatic life event that mental illness swept me off my feet. Before the event I had 4.0 in college, had been at my job for 3 years and was a well rounded over achiever and super mom and social butterfly. Since then I struggle to get B’s and C’s because I can not focus on the assigned work. I get bored and distracted easily barely able to study for an hour before it becomes hopeless. I struggle to maintain employment, and my heart feels void of positive emotions even love for my kids. I mean I love them, my brain knows I love them, but I dont “feel” it anymore. i dont want to color, or play at the park, these are tasks I have to force myself to complete now. Ive had meltdowns in public places due to changes in plans and I live a reclusive life to avoid possible future meltdowns.

    PS Jani is not demon posessed, mental illness is real everything isnt as simple as it must be the devil … Im mentally ill, Im still a person, Im not demonic :/

    Note from Michael: Cami, if you are on Facebook we have a wonderful private online support group for adults with mental illness. It’s just filled with good people like you. You can email me at michaeljohnschofield@me.com.

  27. God Bless you!
    God Bless you. So happy to watch the Oprah ‘where are they now’ tonight and seeing that Jani is in a spec. ed. program a few days a week. YEAH! You are the best parents and Michael, you are so eloquent as a speaker, you really hit the nail on the head when describing how Jani is and you never cease to amaze me! Alyssa, Special Ed. Teacher, in the SF Giants home turf area!

  28. NO!! NO! NO!
    JANIis not! NUTS! SHE ONLY HAS AN OPEN third eye!
    stupid doc s, sleeping psychiatrists, sleeping parants, look at her story s,
    calalini is the wordt between the border, i understand her totally,
    she is open! open chakra s, she sees the etheric field, everybody tell s her she is nuts, what a SHAME! she is only paranormal, i understand, 400, 100 degrees, zeven rats of the week,
    are yo all blind!!

    big KISS FOR JANI! ..

    Note from Michael: Nobody is saying Jani is “nuts.” You may very well be right. But whatever the cause, some of things Jani sees can kill her. That is what you need to understand.

  29. Just getting back to this : )
    I just remembered I left a comment and came back to see if you’d replied to it. I think its the right thing to treat them like they are real, even if they are only real to her. I don’t think it could possibly make anything worse, and in the best case scenario could make things a lot better.

    I believe Jani about Calalini, because I feel like my voices come from the same kind of place. I would phrase it as “inbetween dimensions”, they are partially in this place and partially in another. Sometimes they tell me that they could take me there to where they live, but I refuse the offer because I don’t want to die. I want to stay here and help other people. I feel like if I can better understand myself, and understand and be able to cope with this other world while still staying grounded in everyone else’s world, that I could do a lot of good.

    Note from Michael: You remind me of Jani, who also uses logic to not listen to the worst of the hallucinations that are dangerous. You know what will kill you and so you don’t listen to those.

  30. I did eventually reduce my medications under the supervision of a Doctor, because the only medication that was working for me was causing spasms and making me unable to be creative. In my case reducing my medications made it so that I have a better quality of life, even though I now have more symptoms. If the medications werent causing these problems, or if the psychiatrist hadn’t given the okay to reduce them, I wouldn’t have done it.

    Note from Michael: Although I would never encourage anyone to quit their medications, it comes down to functionality. If you are functional then you are doing okay. Just make sure you have people you trust to reach out to if you feel things getting tough. There is nothing wrong with asking for help.