MyBlog

Life on Mars

 

 

I offended a friend tonight.

 

That’s the problem with Facebook. Actually, it is a problem with me. For most people, Facebook is a way of staying more up to date about someone’s life than we ever used to be able. When I was a kid, the letter was a dying breed. I remember being pushed to write letters to my grandparents. I didn’t want to. What I hated the most about letters was that they were not a moment in time, not an episode, but more a clip show of everything that had happened in the last few months. I hated having to compress my life into two or three pages. My letters were like transmissions from Mars. By the time what I had written arrived in Australia, it was long out of date. Not that it contained any significant information. There was no point because the reply from Earth would take too long. Hence, the clip show, life on Spaceship Michael.

 

When I was a kid, telephone calls to Australia still cost a small fortune. This was long before the days of unlimited calling minutes. So phone calls were like letters, except with voice, quick, generalized updates on my life in America. No substance.

 

My paternal grandfather died before email was commercially available. None of the computers in our house had a modem. Not that it would have mattered. My grandmother never got in email before she died in 2005. She never got to know if we ever made it back from Mars.

 

Now there is Facebook. Most of it is “I’ve found a lonely pig in Farmville” or “I want you to join my Mafia.” I see many pages that are blank except for game references.

 

Then there are others whose status updates reflect an observation about the human condition or a general update on what is going on, “Werewolf has just checked in at Lee Ho Fook’s. Gonna get a big dish of beef chow mein.”

 

Some express frustration or happiness. Real emotions, or at least what you can fit into a 240 character update.

 

 But there is something else Facebook can do, something I don’t even know Mark Zuckerberg realized when created it.

 

For all the negative attention it got when Tyler Clementi committed suicide by jumping off the George Washington Bridge (his intent to jump, along with an apology, was his final Facebook update) in reaction to his roommate’s streaming video of his sexual encounter with another man on Facebook, I have to wonder how many lives it has saved. You don’t get to hear about that.

 

When I am hurt or angry, I share it on my Facebook account. I do this for a childish reason. I am lashing out at the world. Facebook allows me to do that. It allows me to spread my rage and pain to all 500 plus of my “friends,” most of whom I have never met. I am not going to try and speculate as to why people commit suicide. But I do imagine that it is so often a decision made alone. Swallow a bottle of Aspirin and write “Goodbye Cruel World” on a piece of paper you leave on your desk. Or hang yourself from a leather belt in your bedroom. When that final moment comes that pushes you into that, you are alone. It is easy to ignore the tiny voice inside your head telling you no, that you are loved, that people need you, when there is nobody actually there to tell you that.

 

So when I vent on my Facebook account, I am doing so because Facebook allows me let the world know. I know it is awful, but it is true. I don’t sit and stew with it. I can lash out. I will say things like “None of you understand what this is like. You can all fucking go to hell.” I am not speaking to anyone in particular. All my life I have had a tendency to lash out at those who love me most. I suppose it is part of my mental illness. “Fuck you all!” I will scream into my status update. I am not saying this to any of my 500 plus friends. I am saying to the world.

 

But because of Facebook, the world responds now. Within seconds, no matter the time of day, responses start coming in. They are never angry. Generally they tell me to hang on. They share that they too feel like saying “Fuck you all!”

 

And I feel like a jackass for scaring people. But I also know I am not alone. Every time I think I am alone, that no one understands what this life is like, fifty comments appear underneath my status to say that they very much understand. They are living the same life. They never begrudge what I say. They never judge me. They just respond to remind me I am not alone. They don’t offer platitudes. They agree life sucks, which often makes me feel guilty because what they end up sharing is far worse than what I am going through.

 

Without Facebook, I think I might be dead by now. I might have cracked under the pressure. I still crack, and I crack in the public eye of my Facebook account, which scares the hell out of some people, including Susan (because it can be used against me to demonstrate my instability). But if I didn’t crack on Facebook, I would crack in the real world, and cracking out here will kill you.

 

I am cracking in the real world, but out here I can’t show it.

 

A perfect storm has come over me.

 

First, there is the book that I am writing. There is a certain individual who shows up in the comments section of my blog from time to time ever since the LA Times story on us was released nearly two years ago now. He or she hates my guts with a passion. Thinks I am “making” Jani into a schizophrenic for public attention. He or she cursed every public appearance we have made, particularly the Oprah appearance. By now this person seems like an old friend, except the kind that would happily see you thrown under a bus. But his or her’s strongest vitriol was triggered by the sale of my book. This person is convinced I am hoodwinking the world to turn an easy buck.

 

I bring this person up because he or she has no idea. Writing the book has been hell. I have to write it in present tense, which means I have to relive it. All of it. All over again. Every chapter I write pretty much destroys me emotionally, so much so I can barely get out of bed in the morning.

 

First, there is having to relive Jani’s decline. This has been the first time I have had to face the daughter I had and lost. Jani is better today, leaps and bounds better, but she will never be who she was. I didn’t deal with this sense of loss at the time. I refused to because to do so was to risk falling apart and I had to keep functioning, keep the family going. Only now am I dealing with the massive sense of loss. She is still alive and at the end of the day that, and her happiness, was all I asked God for back in the days when her illness was eating away at her personality until there was nothing left but the shell of what had been my daughter, like an abandoned insect husk.

 

She has come through. We stopped, at least for now, the advance of her disease. But she is not the same person. She is changed. How could she not?

 

And then there is my transformation, a transformation I didn’t realize had occurred until I was well into the book. And it is not a good transformation. Yes, Jani’s illness, and childhood mental illness in general, gave me a purpose in life, but I am not the same person either. My transformation was not into a hero. As Jani isolated, I went with her, refusing to let her go into the dark alone. So much so that I was willing to sacrifice everything else. I slowly destroyed my contact with the outside world as she did. I became mercurial, inconsistent, and sometimes cruel.

 

It is not easy to realize what you have become. There is a lot of good there. But there is also a lot of bad.

 

This book is killing me. I am glad it is almost done. The cost to my family to write it has been immense. I have no time during the day so I can only write at night. And I write into the wee hours to make my deadline, then find I can’t sleep. Then I fall asleep into troubled dreams, so deeply that Jani can’t wake me up. I feel like I am sleeping through life right now. I hate it.

 

Then there is Bodhi, who has continued to get worse ever since he turned three and aged out of the Los Angeles County Regional Center services, like speech therapy, occupational therapy, child development, etc. He has been diagnosed PDD (Pervasive Development Disorder). At three, autistic spectrum children are turned over to the school district’s IEP program. He gets free preschool. But where once he got individual therapy, now he shares it with other children. When he started the Regional Center services, he used to bite his wrists, so much that we tried gloves and bandaides to protect his skin. Over the nine months of Regional Center therapies, he stopped. Now the biting himself is back, He chews on himself constantly.

 

And he cries. Constantly. For reasons we can’t figure out. It is so continuous that tonight I yelled at him to stop crying.

 

Just what Jani used to do. The whole reason we split the family into two apartments.

 

 

I should be happy that Jani generally isn’t violent with him anymore, and I am. But  part of the book is my memory of the first few months of his life, when I drove him every morning to a friend’s house so he would be safe, away from Jani. The friend had a daughter and I would come back to pick Bodhi up to find him watching cartoons with our friend’s little girl. And I have been forced to remember the agony of wishing his real sister could be like that.

 

Tonight, he said to me, “I want big sis.”

 

I know he does. He wants his sister to be a playmate. Jani is better. She serves him food. But she still doesn’t play with him. He wants her to rough and tumble with him. Jani doesn’t, I think because she knows she can’t. But he doesn’t understand. He wants his sister. And his sister is still distant. And he doesn’t understand why.

 

He doesn’t understand why every other night his mother leaves.

 

And then there is finances. I was supposed to be paid today for the online class I taught over the winter break. But my paperwork arrived in Payroll three days too late. So I didn’t get paid today. Instead, I won’t get the check until March 15th. Unlike the regular semester, when my pay per class is divided up over six months, winter and summer courses pay in one lump sum. I hadn’t paid our utility bills for months. When my regular paycheck deposited on the first, I didn’t have enough to pay two apartments, as usual. We were overdrawn and utility bills hadn’t been paid in months. After I bought food, restocking the fridge, I was just under the amount needed to pay one apartment. So why starve for two weeks? Why not pay outstanding utilities and Jani and Bodhi’s stored cord blood and car insurance and cell phone? So I did. I made the decision to go late on both apartments, knowing I would get paid for the winter class on the 15th, enough to cover the rent in both apartments plus late fees and probably legal fees. Every time we came home I rushed to door to try and get any potential legal eviction notice before Jani saw it.

 

But it never came.

 

But when I checked the bank today, there was no money. I can’t pay rent in either apartment. Even if we make it to March, they will only accept both the late February rent AND the March rent, for a total of approximately 3300 per apartment. What was 1300 per month will, combined with a second month’s rent and legal fees, balloon to over three grand. That’s six grand total.

 

On the first of March I will get about 1200 after taxes, social security, and health insurance. On March 15th, I will get about 3000. But March 15th is too late. Even if we avoid eviction until then because the LA County courts are so slow, by then we will owe about 8000 for the two apartments, apartments that should cost 1300 each.

 

I can cover 4200 of that. If we don’t eat.

 

In March our lease also expires. I would be shocked if they often to renew us. We have been great tenants in every way except we don’t pay the rent.

 

Like I said, the eviction notice hasn’t come yet. I don’t know why. Act of God?

 

So I need four thousand dollars. From you. Each of my blogs averages over four thousand readers. If each reader could donate anywhere from two dollars to ten dollars we would be fine.

 

I won’t hold my breathe, though. Don’t worry, I won’t hold it against you, either. All of you have done so much for us. If this is where it ends, then this is where it ends.

 

(By the way, I am trying to finish the book so I can get the next part of the advance, which I only get once Random House accepts a FINAL draft for publication). That is the only thing that keeps me going.

 

And the last thing is how I offended my friend.

 

The only time that Susan and I get to spend together is when we do Bipolar Nation Radio on www.latalkradio.com (we don’t get paid for this, by the way). In order to do the show, we must leave Jani with one friend and Bodhi with an intern.

 

For two hours.

 

The reason why the show matters is not so much for the time Susan and I get to spend together. It is because that is how we publicize what is happening to other families with mentally ill children. We try to give them a voice. It gives us a sense of accomplishment, making us feel like we are making a difference. Not all shows are mental illness shows but most now are.

 

But everyone abandons us in the end.

 

My paranoia tempts me to think it is a conspiracy, but that is my mental illness. In truth it is just life getting in the way.

 

The college interns we had a year ago moved on. The professor who had first suggested it killed it when we tried to expand it to other families with mentally ill children. But mostly it was because all of us failed to realize something. Students take vacations. We don’t. We can’t. Our job, the job of a special needs child or children, is 24 hours a day, seven days a week. There is no Valentine’s Day. I honestly don’t remember the last time Susan and I were intimate, a common refrain from parents of mentally ill or autistic kids who are still together.

 

When the students took a break, it was like we were being abandoned. Of course we realistically knew they couldn’t do what we could do, but eventually they couldn’t even do the Sundays anymore. For those without a mentally ill or autistic child, this life wears you down. Eventually you are going to want to find a way out. I can understand that. I did.

 

The last thing the professor ever said to me was, “The interns were all very excited about working with Jani, but more and more of them are increasingly leaving feeling disillusioned.”

 

She apparently forgot that soldiers in combat usually leave feeling disillusioned as well.

 

Welcome to American mental health. There are no quick fixes.

 

All we asked for was Sundays and eventually they couldn’t even do that. So many people have sworn to us that they will always be there for us. Six weeks later, they start making excuses why they can’t.

 

It’s not intentional on their part. Life gets in the way. Taking care of Jani, even for a few hours, dominates your life. Eventually you want that life back.

 

And we are left alone again. And every time it happens, I lash out. I try not to, but my bitter disappointment creeps out, no matter if their reason is that a relative is dying or they are sick. I know these things are true. I know I should sympathize. But what they don’t realize is we have no backup plan. There is no one else to help us.

 

They abandon us not because they are bad people but because we never let them have a break. Because we have no one else.

 

It is hard to explain that. So when I said in my Facebook status that people “are always flaking out on us” our friend got offended, reminding me that she had taken Jani every Sunday for the past four months.

 

She’s right. She has. But four months is, sadly, not enough, because this will never end. I wish I could have a number of people so the burden never fell to just one. But we never can find more than one.

 

I want our friend to understand I didn’t say what I said as an attack. I said it out of desperation.

 

Because once she is gone (and she is probably gone), it is just me and Susan again, ripping each other to shreds as we circle around Jani and Bodhi, constantly trying to keep them safe.

 

I have many friends on Facebook. And they save my life on nights like this.

 

But we got no one in the real world.

 

Update: 2/17/11 01:27am

 

Well, the notices that we were being sued for eviction arrived today. Thankfully both were placed outside Bodhi’s apartment which I am grateful for. Still panicking but getter better. Since this blog was published you all have graciously donated $1000 in 24 hours, which leaves $3000 to go (or as close as we can get) (normally the rent on both apartments together would be $2600 but the legal fees charged by the complex are now $500 per apartment and rising. In the interests of transparency, I will keep updating as/if money comes in, and what happens. Right now I have to respond to the court filing by this Saturday. Tomorrow I will have to go the local courthouse and find out how to file a response.

 

-Michael

2/17/11 8:27pm

Donations are now up to $1600 total. We are getting closer to be able to pay at least one apartment. However, due to the amount of time it takes Paypal to transfer funds to our account we will probably still have to go to court. Hopefully I can get a stay. I appreciate all of your generosity. I would say that if the day ever comes when I can pay you back, I will be, but you would probably take that as an empty promise, but it isn’t quite. Paypal keeps a record of all donations so my hope is that one day I will be in a position to go back through them all, one at a time, and refund all the money.

So as of tonight we need about $400 more to pay rent and legal fees on one apartment. Realistically, I know we probably won’t be able to get another two grand to pay the other one.But I am truly touched and honored that we have almost made it halfway, and I’ve only had 1100 readers so far.

I also know this is probably the last time I will be able to do this. Even without the criticisms I get every time I ask for money, we can’t keep this up. Something will have to change. I don’t know what yet. That is for another blog.

 

-Michael

 

2/18/11

 

Donations are slowing to a trickle. In the last 24 hours, we have raised another $160, bringing the total to $1760, still not enough to cover one apartment (rent and legal fees are $1950 for both). Got the legal summons from LA County Superior Court today and I am working with Legal Aid, but that only delays the inevitable. Don’t think we are going to make it this time. We have friends who have friends in real estate looking for us. My only stipulation is that we have to stay the Santa Clarita school area (because I am not sure any other school district would be as good as they have been about giving Jani what she needs-so moving to a real cheaper area is out of the question). We have to stay in the area, which is an expensive area. The other stipulation is they have to take pets. Jani will not be able to give up her pets and neither can we. We didn’t give up Jani and we are not giving up our pets. She needs them. So we shall see what can be found. I am sad because the two apartments was a brilliant idea that kept our family together rather than send Jani to a residential hell hole. It worked, but it is over. However, if any of you think we will send Jani to residential just because we can’t do the two apartments anymore you don’t know us. I’d rather be on the streets as a complete family than financially secure with one child gone.

 

-Michael Schofield

 

-Michael


 

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35 comments on “Life on Mars

  1. Thank you for sharing Michael. Your pain is evident, and I wish that there was something that someone could say or do that could make it all better, but of course there isn’t. Your openness on this blog does allow others to see a small glimpse of what you go through, and I hope and pray that your putting yourself out there as you have will one day help someone else. I know that it probably doesn’t feel like it on a daily basis, but there ARE people who are rooting for you, and hoping and praying that you are able to continue what you feel is best for your family. I will continue to pray for you and your family that things will become easier for you.

    P.S. If you have to scream “fuck it all” on facebook to keep from screaming it in real life, so be it. That is your outlet, and you are entitled to it. We all have to do that sometimes.

    Melissa

    Note from Michael: Thank you, Melissa. I know there are people rooting for us. If I didn’t think that I wouldn’t write this blog. I do it because I know people listen and people care.

  2. Raising funds
    Hi Michael, I read recently that “loans on future earnings” are a popular way to raise funds these days. Maybe you could ask a banker for a loan with collateral being your future advance. The advance is all but certain since it is all but certain you will finish the book – if you can just get the stability to finish it, which the loan would provide. So maybe possible?

    Note from Michael: It’s worth trying. Thanks, Ken. Someone else I suggested I do the same thing with my future work paycheck that was supposed to be paid yesterday because I do have a specific future date when I will get the money.

  3. i don’t comment here, but i always read. i don’t think any rational person who has any life experience would judge or hate you. only the opposite lash out. we have no idea what you go through, well, i feel i can imagine it through your posts here, but that’s all really. who are we to judge? you admit you have a mental illness. of course that comes into play. anyway, just wanted to say hi, and give you a virtual hug. also, there were a few dollars sitting in my paypal account. it’s yours. i don’t do the facebook thing (UGH) but i do read this blog, so keep us updated. we’re here.

    Note from Michael: Thank you, Leel.

  4. Michael,

    I think the honesty and lack of censorship in your facebook statuses are a great way to vent. You have the right to express how your feeling at any given moment in time, and venting on facebook is a safe and healthy way to do it. Life is frustrating and angering, and it’s not childish or immature to let it get to you. It’s part of being human. If I had a dime for every time I’ve snapped at someone I care about and offended them, money would not be an issues for me.

    I donated some money, and it’s not very much, but I hope it’s one of many from all your readers. If I lived in California, I would absolutely love to spend time with Jani or Bodhi, but I’m sure you hear that a lot =).

    Also, stay strong with the book. Writing can be extremely painful. As I’ve struggled to overcome my own issue, writing has been absolutely essential to me, but yes, sometimes it feels like I’m reliving the worst moments of my life just be writing about them. It takes a lot out of you.

    Cassie

    Note from Michael: Thank you, Cassie.

  5. me too….
    Hi Michael, I too have offended friends during our rather turbulent times. In a different manor – rather than lash out, I put up walls…but it has exactly the same impact on others who don’t understand the “why” behind it all. It isn’t like there are a whole lot of people out there who know what it feels like to live with a 9 year old with schizoaffective disorder. For me, I need to start working on bringing the walls down. I sent you some money today. I hope we can all work together to keep you all home….AND with the lights ON.

    Note from Michael: It still amazes me how all of you come through for us, even in the face of your own struggles. My only frustration is that I wish a rich foundation would do it. I hurts me to see people giving when they really can’t but they do it anyway. Makes me wonder what I did to deserve such wonderful people in my life.

  6. Long tmie reader, first time commentor
    I have been following your blog for quite a long time (I check it daily!), after having caught Jani’s story on some TV program or another – I have seen all of her TV specials now. I am an MD/PhD student, and wanted to let you know that her story, and the stories of other children like her, have rekindled my love for psychology that I feel slipped away awhile ago. I studied psych in undergraduate school but somewhere along the way lost my passion for it in my first two years of medical school. I have always known whatever my specialty, I wanted to work with kids. Because of your family’s story, I am now very seriously considering child psych as a future career. Just wanted to let you know that your story does inspire those of us who will hopefully someday be able to make a difference!

    I also wanted to add to the many voices telling you to “keep on keeping on” as we say in my family – you and Susan seem to be doing a great job with your kids, so try not to listen to all of the people that tell you otherwise. Medications are necessary, no matter what some people may say. It is always frustrating as a future doctor to listen to people talk about how harmful meds are or how they are unnecessary. It is definitely true that all medication has some negative side effects, and psych meds are some of the worst, but they are still completely necessary! I myself have struggled with severe depression in the past and have been met with resistance from my own family when medication was the only option to get back to normal. Try not to let people get you down!

    Finally I wanted to let you know that, while small, I have made a donation on PayPal. I only wish I were able to give more, but living off of graduate student wages with quite a lot of medical bills of our own, it is all we can really give at this point. I hope even this small amount is helpful, and hope we may at some point in the future be able to give again.

    I keep your family in my thoughts and prayers every day. Best of luck to you all – I will continue to look forward to updates on how your family is doing.

    Note from MichaelL I am thrilled you are considering being a child psych. We desperately, desperately need them, specifically child psychologists who specialize in psychosis, of which there are almost none (the only ones I know learned on the job). If there is anything I can do to help with your doctoral research please let me know!

  7. Jani’s Castle 2
    Jani Boosters: I’ve pledged $500 to make up part of the $4000. That leaves $3500.

    Please, if you’ve ever cared for Jani; if you’ve ever been brought to tears by the struggles she has gone though (and will go through in the future), please, contribute what you can.

    Even now, I’m sure the eviction sharks are circling Jani’s castle and will strike at any moment. I figure, knowing (from sad experience) how these things work in Los Angeles County, that it might be just a week or so before the notices go up.

    As Jani’s benefactors, we just can’t allow her to be traumatized by strangers going around putting threatening notices on her door. Or risk having her traumatized by having to move too soon.

    So please, donate what you can.

    Note from Michael: Hi Carl. Actually Susan came home and found them today. I am trying desperately hard not to panic. They were both placed on Bodhi’s apartment so I guess that is a blessing. They are dated the 14th but we only got them today. We have five days to respond. I have to go down to the courthouse tomorrow and learn how to respond. So far, almost $1000 dollars has come in, which I am immensely grateful for, but I don’t think we will get to 4 grand by the 19th, the deadline to respond (maybe we will get a few more days because of President’s Day). I am working every avenue I can think of. I am actually even thinking about seeing if I can get a job teaching English in Europe. It is probably nuts because how is Jani going to adapt but I am really desperate now.


  8. Protective Services have been notified.

    Note from Michael: Okay. You, know I have been thinking a lot about your comment on my last blog (you do realize not using your name gives you no credibility, right?) Hold on, let me get it. Here, this one: “written by Concerned, January 29, 2011
    It’s really no wonder that your youngest is developmentally behind when you look at all that he has to deal with. He is living in the shadow of his sister – he is forever being sacrificed for Jani’s good. His needs, his childhood, his happiness and his safety all come last to the people that are most responsible for him. And yet their hope is that he will grow to feel responsible for his sister and take over caring for her when his parents are no longer able to. What a disgusting reason to bring a child into such a sad life. What a horrible life you have offered him.

    What will you do if he grows to hate you? Hate Jani? What will you do if he refuses to give in to your whims of providing and caring for her? What if he decides that *gasp* he would like to live his own life? Do you not see what an awful position you will be putting him in?

    In the mean time, what will you do if you find that you truly cannot go any further? If the donations run dry from readers no longer willing to support not only the needs of your family but your own selfish wants. Cigarettes and cell phones with Internet and cable television, etc. You can justify these things any which way that you want, but they are not needs – every dollar spent on something that you want is a dollar not being spent on something that is very desperately needed. Why aren’t you cutting down on luxuries? Why aren’t you applying for food stamps? Why aren’t you visiting food banks? Why do you insist on keeping up the charade of everything being just fine?

    What will you do when your lease runs out and there is no option to renew? What will you do when you find yourself homeless and unable to find shelter for your family? I assure you, there is always the very real possibility of a landlord doing a Google search for your name and finding this very blog and being, understandably, cautious of renting to you and your family.

    What will you do as Jani grows older and harder to control, when puberty hits?

    You are not a child and you are not a schizophrenic – Jani may be able to ignore the future and pretend that everything will be okay, but you cannot. You simply cannot afford to any longer.”

    You know I am a rhetoric teacher, right? That is what my MA is in and that I teach rhetorical aspects of writing. Rhetoric has three components: purpose, audience, and tone. Your tone is clearly hostile and such a tone really doesn’t work if your goal is to get your audience to listen to you, and I am assuming the audience is me.

    But the big thing that has puzzled me all along is what is your purpose? Purpose in rhetoric is essentially “What do you want?” The speaker or write wants the reader to either start doing something that they are not or stop doing something that they are doing.” In other words, purpose is all about what action are you trying to achieve? And that is what I can’t figure out about you: what is your purpose? What is it that you want? Do you want Jani in residential? Is that it? Or is this about me and you want me to fail in my quest to keep my family together? What is your purpose? What do you want?

    I’d be interested to hear, Concerned? Concerned about what? What is it you want? Bodhi away from us? You think that would benefit him? You think he hates us?

    Children never hate their parents. What they hate, what we all hate, is inside. I hate many things about myself.

    What do you hate about yourself?

    By the way, Bodhi is PDD and autistic (at least), so had we sent Jani away it would have been for nothing. Oh, and Jani is less violent now. She rarely hits him.

    So what is it that you want?

  9. (((((((( )))))))))
    Dear Michael,

    – We always lash out worst at the ones we love most – that’s because we know they truly love us and won’t leave us. Human nature.

    – I work in a police dept. Just last week we received a call about a posting on Facebook – young teen going to kill himself. Police found him and were able to get the weapon away. So there, a story you don’t normally see.

    – I’ve worked with special needs kids for years when I was a teacher’s aide and so wish I lived close to you to provide some respite care.

    – Your story touches me in such a personal way – my own father was emotionally abusive and neglectful during my childhood. I idolized him until I was old enough to realize (I wish I realized it much sooner) I didn’t deserve or need that treatment. To see how much you love your children is beyond what I can even comprehend but I’m so glad for it, glad for Jani & Bodhi. I married my own husband knowing he would be the kind of father to our children I never had.

    Here’s another donation, I’ll do without some luxury or purchase that won’t even affect my life, yet it will do some to help you, and THAT fact WILL affect my life in a better way.

    I hope everyone who reads this comes through for your family. There but for the grace of God….

    Rhea

  10. Hi Michael,
    I have been following your blog since seeing your family on The Oprah Show a year or two ago. The only people who will EVER be there for you or who will have your best interest at heart will be FAMILY. It’s sad to say but most people are looking out for themselves and their families to survive. Do you have any family or relatives support close by or who live in the state (California)? I’m sorry I cannot donate money, but I do pray every night and will definitely say a prayer for you and your growing family. Please keep your relationship with Susan healthy, supportive, and appreciative because at the end of the day, only you and Susan understand what your family needs and what your family is going through. You both have been chosen to bring January and Bodhi into the world and only you both know what decisions you need to make for them, just like all other families. Glad to know you are still keeping your blog updated dispite writing your book!
    All love,
    K J

    Note from Michael: No, no family in the immediate area. My dad is fantastic and I love him to death, but he lives in Arizona and is flat broke himself. Susan’s mother…she appears to have cut us off. I got angry at her online when she made an inane comment like nothing tough was going on with us and I blew up and said regretable things, things for with I have apologized, but no dice. Susan’s mother carries a grudge forever. We haven’t heard from them in months. It is hard on Susan. She misses her mother.

  11. Thanks for asking. 🙂
    Pickles is day to day, moment to moment. Her level of paranoia seems to be increasing which is worrisome. But…but tonight was good. Nothing went flying across the room, and I wasn’t told she wants me dead and chopped into pieces. So all in all, not too bad tonight. It’s these moments I cherish. We all cherish.
    Pickles would love that. She asked the other day when she was playing with the Flipcam if she, and Edward of course, could make a video to send Jani. I told her that’s a great idea and we could make that an activity one weekend.
    Kirsten

    Note from Michael: I know. The moments of peace are wonderful, mostly because it makes us hope that they are at peace. If you need any help from us, need us to make any calls or throw our weight around, let us know.

    I love her nickname, by the way. Reminds me of Clementine from the books of the same name.

  12. Raising funds
    I’ve been thining about what Amanda said on fb about reddit.com

    “there is a “community” of really awesome people on there that could maybe help out. if you don’t want to post, i could do so on your behalf with your permission, of course. here is where i’d start: http://www.reddit.com/r/Assistance/ when times were super tough for my twins and me, i swallowed my pride and asked for assistance. i was provided with more than i even needed by really kind folks over there. i have a feeling they’d love to help your family, too.”

    This might be a real good idea. reddit link got 60,000 views of the LA Times youtube video on Jani. You are well known there and the people are mostly all sympathetic. Hearing from you and maybe Jani herself might illicit a good response.

    All you would have to do is:
    * join reddit.com
    * go to http://www.reddit.com/r/Assistance/ and click “add link”
    * write title e.g. “Jani Schofield, schizophrenic child seen on Oprah, needs your help.”
    * write a short intro and request on assistance page e.g. need to finish book and have financial problems in the mean time making ends meet. Please donate Will answer questions and Jani will answer questions you post here in exclusive interview only found here on reddit. exclusive video answers of questions for Jani. In social media this is what gets people interested and involved. If it hits reddit is a big site and could do well.

    Or if you want me to post this for you let me know. But if they think you and Jani will be there to answer their questions exclusively, it could grow legs quickly.

    Anyway, just spit ballin.

    Note from Michael: Thanks, Ken. I think it is a great idea. I will try to find the time.

  13. I am so disgusted by the person who hates you and comments that they are concerned. What a hateful human being. KARMA KARMA KARMA is all I can say. Michael, you and your wife are awesome….don’t you ever forget that!

    Note from Michael: Thanks, Patrizia, but only someone who was mentally ill themselves would write something like that. He or she is deserving of our sympathy. He or she is clearly consumed by a lot of anger and struggling with anger myself (without my medication), I can relate.

  14. I’m not sure I agree with you posting “Concerned”‘s email address on here. You have a public blog, and you allow people to post on it as they see fit (although you do reserve the right through your Terms of Usage to alter these replies in any way you see fit). While you may disagree with the things “Concerned” says to you – as you may disagree with a number of things people say to you on a daily basis – I don’t agree with the action you took of posting this person’s email address.

    Just as you ask “Concerned” – what is your purpose? I ask you the same – what is your purpose in advertising this person’s email address? So that your supporters will email hateful things to the person? So that the person will be harassed? So that this “threat” of posting personal information will keep “Concerned” off of your blog?

    I think it’s a fairly slippery slope you’re starting down. You may not agree with what “Concerned” has to say and you may not understand where “Concerned” is coming from or what the purpose of the replies he/she posts is…that being said I still don’t think it’s your right to start posting this person’s information on your site.

    Again I ask you – for what purpose are you doing that?

    Note from Michael: You are correct. I was out of line with that. I will remove it immediately. But to answer your question, I hate it when people criticize and then hide behind the anonymity of the internet. If you got something to say, have the courage and the conviction to be willing to go on the record with it.

  15. hello/help
    Michael and family – I’ve followed you since I saw you on Oprah. My heart goes out to all of you. We have a happy, healthy daughter Jani’s age. I’m very blessed. I know my husband and I would do the same as you in your situation. Nobody who hasn’t spent a week in your shoes has a right to criticize your choices. You are both doing what you feel is best.

    I live in Oregon so I can’t babysit, cook meals, or sit and listen. The only help I can offer is financial. Do you have a PO Box or address? I hate to send $ through paypal and have them get a cut.

    Please hang in there – Keri

    Note from Michael: Nope, no PO Box. Can’t afford it. I am desperate so I guess I will have to bite the bullet and send you our address.

  16. A drop at a time
    A friend of mine got scammed today on the way into work. The man said to her, “I just need $3 to refill my daughter’s inhaler. She’s on the side of the road, unable to breathe.” She gave him the money, out of both fear and compassion, and the man ran with cash in hand. She has a good soul, but I still yelled at her for being suckered into giving her hard earned cash away. I told her that it angered me because someone really deserving could have used those dollars.

    I check in on this blog to see how your family is doing, and today I had that urge. Perfect opportunity for me to put a few dollars into very deserving hands this time. I know it’s just a drop, but I hope we, those who follow your story, can fill that bucket up and let your whole family breathe for a bit. I see this blog as your inhaler, and if I’m a sucker, screw it.

    Best to you and yours.

    Note from Michael: No, you are not a sucker, but I don’t think your friend was, either. I do the same thing. I give a few bucks to somebody, like a guy who said his car broke down and he needs money for the bus, and I go into the supermarket, and I come out and he comes up to me again, telling me the same story, clearly having forgotten that he already hit me up. But I don’t get upset. I know he is scamming money for drugs or alcohol but to me, and this is just me, it doesn’t matter because that person obviously has problems, possibly mental illness (because what person with self-respect would do that? I hate begging for money) and if those drugs or alcohol gives them just a shred of happiness and gets them through the day, so be it. I look at it as an act of human kindness. Why meet their lack of dignity with our own?

  17. Build up, don’t tear down…
    To Michael: I have donated before, and I’m happily donating again. I’m at a place in my life where I can afford to give a little more, which I’m happy to do. PS I’m sure you’re tired of suggestions, but I want to offer one more. Are you paid to write your blog? I know many bloggers who are paid by companies who buy advertisement space on their blog. It seems like a great way to bring in a little extra cash.

    To the person who claims to have notified protective services…shame on you. Where else do you suppose Jani would receive more devoted, loving care than at home? Children are removed from their homes if there is evidence of harm or potential danger to their well-being. But, regardless of financial status, if a child’s environment is conducive to positive growth and development, she will not be taken from it. From what I’ve read on this blog, Jani thrives on the environment and routine her family has provided for her. She is in no danger that I can fathom. Plenty of perfectly “normal” children are subjected to far worse living conditions. And in this economy, you’d be hard pressed to find a family who is not struggling financially somehow. Michael has devoted readers who strive to help ease his finaincial burdon. If you’re so concerned with Jani’s well-being, I urge you to join us and donate what you can. We all want to help Jani thrive and overcome her challenges. No one else, especially the state, could do a better job than he and Susan are trying to do. Why would you ever consider taking her away from that?

    Note from Meryl: Thank for the donation and the suggestion. No, I am not paid to write this blog. No one has offered. As for advertising, I don’t want to cheapen this place by having advertisements. I wouldn’t want people to think I endorse something that I don’t. It is probably a stupid principle to stand on given my situation, but that’s how I see it.

  18. I agree with Keri E. – I asked once before where I could mail a donation without using PayPal because I want you to receive EVERY SINGLE CENT. I understand you’re reluctance to give out your address but can you repost the man’s name (I assume he’s a good friend) and work address where donations/gift certificates etc can be mailed?
    Don’t worry about posting “Concerned”‘s email – if he/she chooses to spew garbage on a public blog then they don’t deserve to have anonymity. Public is public….it shouldn’t work only one way.
    If Susan’s mother happens to read this blog I would only wish that she would get over whatever it is and be there for her daughter and grandchildren. She will never get this time back again. Susan, I admire you as much as Michael and hope for the best. You do such a fine job on your radio show, I can’t believe a network hasn’t snapped you up yet.
    Rhea

    Note from Michael: Yes, I understand. Donations can be address to us care of

    Steve Truitt
    Westwood One
    8965 Lindblade Street
    Culver City, CA 90232-2438

    And yes Steve is a good friend we have known for years, long before any of this so we trust him completely.

    I see what you are saying about “Concerned” and yes I don’t believe that anyone should use the net to hide their identity. If you believe something, own it publicly. That being said, the other poster was right. I should not have posted his/her email address. There was no reason to do that. I did remove it.


  19. Hi Michael,

    I’ve been in a similar, financial, situation like yours before. I was fortunate to I had a “net” to catch my fall. I know exactly how humbling it feels. What I donated is not what I wish it could be… I think most of us feel that way. But, every little bit counts, right?

    I wish I had some glorious words of wisdom or something to cheer to you up. I don’t.

    I just know that you have a beautiful daughter and son. With just that- you have more than I do.

    Here’s to hoping that my husband and I will, someday, become half the parents you and Susan are.

    Note from Michael: Every little bit does indeed help! Thank you!

  20. Hopefully more what real concern looks like…
    Michael,
    I have left you several comments now. I have struggled to really articulate the depth of my response. Before I said anything I wanted to be sure you knew that I am not only a survivor of and in co-existence with my own severe mental illness, not only a supporter of rights for the mentally ill in general and your children in particular, not only a loyal reader, but someone who cares about you, Michael Schofield, deeply.

    The thing about some of the “haters” or “trolls” that have popped up over the years and why they don’t go away is because there is a delicate kernel of truth in some of the things that are said. The fact that it’s been used as a weapon against you by people who most likely couldn’t care less is really disappointing, yet the message is still important.

    Michael, it will be really hard, and I don’t claim to know what the answer will be for you, but you must find a way to stop lashing out at others as a means of venting stress. I disagree with anyone who wants to claim this is an ideal or healthy way of processing your feelings. Studies tend to show that verbal ranting doesn’t make upset people feel better, and based on the tenor of your writing before and after such instances I doubt you’re an exception. What it does do, as you candidly acknowledge, is scare people. Those people include your children, possibly your wife (you don’t speak of her reactions very often, so I don’t claim certitude.) Those people include your support system, your volunteers, doctors, therapists. Scared people run away, some forever. There are many important burned bridges around your island that wouldn’t be that way if just your approach, not your message, was different.

    As adults, Jani and Bodhi will remember all of the outbursts and raised voices a lot more clearly than you’ll be comfortable with. They will read all the various edgy, aggressive blog posts. They will have a hard time breaking the patterns they are witnessing you engage in now, partially out of loyalty and partially out of not knowing any better. No matter how much you love them (and obviously, that is a great deal), their memories of your anger may end up dwarfing it all if you don’t find a way to stop. It is not enough anymore for you to just apologize sincerely every time you “go off” on someone. The stakes are getting higher for you all the time.

    I also think it is fair for your readers to be concerned about the tenuousness of this financial situation. Trust me, the children know. Maybe not in words, but they can feel the tension and the desperation in everything you say and do. That kind of constant hyper-vigilance will be extremely damaging to their developing brains. More so than it will be damaging to deal with the fallout of moving the family back in together. More so than it will be damaging if you move to a state where the cost of living is less (at this point, I’d say it’s a must.) In some ways keeping the donations coming is just forming the inevitable moment when this unsustainable situation falls apart into something even more painful. I would never argue that Jani needs to go to residential or that your family should be in any way separated. There are options for you, like the ones above, which you may have considered and dismissed but really need to give a second look. Not because they are ideal but because your current situation is not going to last. You know that.

    At some point, Jani needs to be brought in on the game of “let’s make this family work.” She needs to be made to understand that even though she is sick, she has a choice to fight every moment she’s lucid to keep the psychosis from coming back, to hone that skill, to think of it as a lifelong battle of her own, not yours, where there are no excuses. She needs to understand ultimately it’s up to her to make a way for herself in this life, no matter how much the universe stacks cards for or against her. It’s best for her to learn the ropes of this now while there’s still room for practice and error. If it waits until she’s in her early twenties or until you’re gone, it may well be too late. As harsh as this may sound, I know from personal experience that lifelong mental illnesses make one grow up young, and it’s best to face that sooner than later.

    Please understand I have had to work up the bravery to say this to you for months, knowing you might be angry or not trust my sincerity, and knowing other commenters might attack me. I swear to you I am only saying this because I care about the outcome and it really bothers me how much unrealistic polarity I see in your comments, post after post. It seems most people are either tearing you to bits or worshiping you as an immortal. I intend to do neither. I would think if I was in your position I might appreciate a more balanced response every now and then.

    Also, I will buy your book and plaster word of it everywhere. Regardless of my (occasional) disagreements with you, I support your cause 100%.

    Note from Michael: No, I am not angry at all. See, the difference between you comments and those of “Concerned” is that you calmly and articulately make your point and you are careful to compliment the good before going to the not so good. Your rhetoric is excellent (and I mean that as a complement-I am an Aristotlean rhetorition and I you get your point across very well). I would like to disagree with you but I am not sure I can. However, please understand that the burning of bridges is a result of the constant and total stress that never lets up. It isn’t an excuse but an explanation. Thanks for writing.

    As for moving to a cheaper area, there are complications that many seem to forget. It took us two years of fighting with the Newhall School District to get the services she has now, which are wonderful? What will we face elsewhere? How willing will another school district be willing to work with us? (and you can bet then I be burning more bridges-I see how disticts stonewall families like us who have the same needs but lack the media attention). And then there is UCLA. I hear horror stories about other hospitals. Do I really want to leave UCLA, even though she hasn’t been there since November? See, cost isn’t the only concern. We went through so much hell just to get Jani this stable and I am not about to rock the boat. Your point that I (by worrying about money) and rocking the boat is valid, but her stability is hard earned and fragile. I would also have to work more and Jani never does well when I am at work. She can only handle me being gone for about two hours. My only real option is to finish the book.

    And please know I am always open to valid criticism.

  21. Well said
    Just a comment – Zell is an appropriate poster and knows what it means to be concerned. Well said – by both of you. Thank you for the perspective from someone dealing with severe mental illness –

    Note from Michael: Zell has posted before and always makes excellent points.

  22. Zell said it for me–with eloquence
    Thanks, Zell. You managed to say what I have been moved to say for months myself. I held back because I didn’t want to apply the emotional stress that I felt myself when I left the parent’s group on Yahoo. Like you, I completely understand the country that Michael and his family live in. I have a teen-age child who is severely autistic. He has never talked and he can be both endearing and subject to challenging behaviors at times. I have experienced the almost bottomless frustration when promising services or situations go downhill or evaporate. I have a spouse who often reacts to the stress as Michael does and believe me- it doesn’t help. I left the group because it added further stress instead of relieving it. I hesitated to state this because a group leader has a right to set priorities and goals and that was Michael’s group. I needed simple virtual support and he wanted establishment of local connections and financial help between families. I felt alienated by the tone and it increased my feeling of isolation.

    When he talked about the intern and therapy situations, it gave me the same wary and weary feeling that it gave Zell. I understand from the very bottom of my heart and depths of my understanding how he feels. I just don’t think that this response will get him where he wants to go and it does scare me as it does when I see this response in my family. He wants to administer and remodel these situations and this causes a flight response for some. Is this fair? Not always. Does he often have a real point? Without a doubt. But, it is as if I came into his class as a student and pointed out how he could tweak his syllabus or change certain assignments. He might be open to what I have to say, but not to the level that I might want him to be. Course requirements might dictate that he can’t be.

    I haven’t expressed this nearly as well as Zell did, but I feel just as he/she does on nearly every point. Actually, I have held back because-as I said- I know the stress of Michael’s situation and his obvious and deep devotion to this family and I didn’t want to bring any reservations that might make his burden bigger. Please know that I care, but that I also worry that you do seem to work counter to your own interests at times. Of course, we all do this. We are human, but I think if you take Zell’s counsel to heart, you will be glad you did so.

    Thanks…

    Note from Michael: It is true that I want action. I don’t see how well wishes changes anything. I criticize those who make life harder for parents like this hoping, perhaps in vain, that it will bring about change. That is who I am. I am militant. I am aggressive. And I realize I will burn bridges. But for every person I alienate with that, there are even more who get behind me because they feel the same way. It is a just a difference in personality and I suppose a difference in how we deal with the stress. We all experience same stress of a having a special needs child. We just react to it differently.

  23. Note from Michael: No, you are not a sucker, but I don’t think your friend was, either. I do the same thing. I give a few bucks to somebody, like a guy who said his car broke down and he needs money for the bus, and I go into the supermarket, and I come out and he comes up to me again, telling me the same story, clearly having forgotten that he already hit me up. But I don’t get upset. I know he is scamming money for drugs or alcohol but to me, and this is just me, it doesn’t matter because that person obviously has problems, possibly mental illness (because what person with self-respect would do that? I hate begging for money) and if those drugs or alcohol gives them just a shred of happiness and gets them through the day, so be it. I look at it as an act of human kindness. Why meet their lack of dignity with our own?

    Response to Michael: I think you make a good point, and you’ve actually made me feel better about all the times I tried helping people who really only wanted my money (including a woman and her son who I took to a hostel and offered a full meal, only to be asked for the cash instead). My point, if I have one, is that human kindness is not always directed toward the truly deserving (i.e. people like you). But, who are we to judge who really deserves help or kindness, right? We all need help. Clearly.

    Quick story. One saturday when I was a kid, my mom took us to the video store and let me and my brothers pick out any movie we wanted. It was a big day. They told her how much it cost, whatever it was back in the 80s, and she pulled out a handful of change, counted up the right amount of quarters nickels and pennies, and told the video guy with a big smile, “Just enough left for toilet paper and milk.” He gave her an awkward smile back – I knew he felt uncomfortable. We went to the convenience store one door over and got the milk and tp. My middle brother dropped the milk on the way out, that kid was always dropping things, and I remember watching the white flood pool underneath our car. No milk for the week. My mom broke down and cried wildly. We were broke, and we all knew it. She reeled in the tears, looked at us and said, “well, hey, at least we got the movie first!”

    I think being able to give us some sort of normalcy (a family movie night) was heaps more important than that gallon of milk. She really didn’t have a choice, but I think if she did, she probably would have gone for the movie over the milk anyway (maybe not the tp though). But with your grocery store story, you did need to make that choice yourself – what is most important? what will make my kids happy? what can we live without? what will keep Jani safe? That’s a lot to consider, especially on a hungry belly, and I think it’s unfair for people to tell you to get rid of “luxuries” when it’s not quite that simple.

    Forgive the reference, I have a toddler, but “just keep swimming.” You’ll get to the top. And hopefully get a chance to take in a huge gulp of air.

    Note from Michael: Powerful story, Kate. And, yes, I get the Dory reference 🙂

  24. I just wanted to say I have been following yours and Jani’s story for almost a year now, and I have read most of your blogs. Even though I don’t know you, I still wanted to help. I’m 23 and a student, so I wasn’t able to donate much, but I wanted to at least do that much. As someone who has suffered from depression for ten years now, I definitely can relate to the feelings you described (though certainly not to your situation as a whole…I can only imagine…). Anyways, just wanted you to know I am thinking of you all tonight. I really do wish the best for your family.

  25. It’s kind of selfish that you would rather your children be homeless than send one to residential treatment that she very possibly needs. You could at least visit the residential facility and take them into consideration before you condemn the men and women who dedicate their lives to working with people like your daughter there. That said, it sounds like Jani is doing better and with your guidance can learn to live w/ Bodhi, rather than go to a facility. I hope, however, if Jani worsens and Bodhi’s life (or yours or Susan’s) is in genuine danger again that you take it as a sign that Jani needs more help than you can provide.

    Note from Michael: Selfish? I have never, NEVER, heard of a residential facility where abuse doesn’t happen. I have never, NEVER, heard of a residential that is actually therapeutic instead of a prison. And I have never, NEVER, heard of a facility with phantom people who “dedicate their lives to working with people like Jani.” These facilities are in the middle of nowhere were it is often the best job in town so the staff isn’t trained and know about how to deal with a psychotic child other than putting them in a chokehold or isolating them.

    I tell you what. I am glad you are not Jani’s parent. Or Bodhi’s for that matter. Clearly you would sell your kids out as soon as it got tough.

  26. 🙂
    Michael, I am pleased that I could be so direct with you and have your understanding. I hear you when you speak of differences in personality and different ways of reacting to stress. I do think at least a few of your more militant moments were called for — most particularly that embarrassing (for them) scene with the Santa Clarita Child and Family Center backing out of care for your daughter for entirely trumped up reasons. It would have been one thing if they had just been honest and admitted they were afraid of the bad publicity. Anyway, I do hope if/when it is affordable, you look into some garden variety talk therapy for yourself. Find someone who has some familiarity with dialectical behavioral therapy, at least the mindfulness part. Or go direct to the source and just read some Marsha Linehan. One hour a week for yourself, maybe even break it up to ten minutes a day. I used to get so angry all the time, so fast. Sometimes I still do. The difference is mindfulness.

  27. You seem to think that all residential treatment facilities are basically a One Flew Over the Cuckoo’s Nest situation. While it is true that some have problems, many MANY more are carefully regulated and run by competent and caring individuals. The fact that you seem to be relying solely on anecdotal evidence isn’t very convincing. Obviously, you are correct in that residential should be the last resort. However, you can’t make these sweeping condemnations of modern facilities without actually researching the individual facility…visiting it yourself, speaking to the staff, speaking to people who have been treated there in the past, looking at its records. Brenna’s mom, from More Than Words, seems to be pleased with Brenna’s progress and treatment in residential, for one real-life example.

    Yes, it is VERY selfish that you would rather Jani and Bodhi live in the streets than a home. Homelessness is the worst option for your children. It seems as though you are harboring a pretty severe co-dependency on your daughter that is preventing you from seeing this.

    Note from Anon: You seem to think I am basing my opinion on nothing. Name me one of these “carefully regulated with competent and caring individuals.” You know who regulates RTCs? Nobody. Nobody at all. RTCs have more calls into Department of Family Services for abuse than the rest of society when adjusted for population difference.

    Why do you so badly want us to get rid of Jani? Why are so invested in us sending her away? You’ve been saying the same thing since this blog opened. Why is that you want us to fail so badly?

  28. Sending a severely schizophrenic child to an in-patient residential facility where she can get 24/7 care isn’t “failing.” However, winding up homeless and losing her to a crapshoot foster system (because if you do wind up homeless, you will NOT be able to stay together and she and Bodhi absolutely will spend time in foster care) when you could have provided her with services IS failing.
    I do not remember the name of the facility that your insurance will allow but if you remind me I would be happy to do some digging into its past for you. It would also be nice to know if your insurance provides more than one residential option for her, although I think you said they don’t (which is a shame).
    No one wants to see Jani HAVE to go to residential. Clearly the best thing would be if she could function at home, with people who obviously love her. However, all of your writing indicates that your qualms with residential are about YOUR needs, not hers. You have written that your devotion to her extends so far as to blind you to Bodhi’s needs. You have made threats of suicide if anything happens to her. This all suggests that your determination to keep Jani at home is more about servicing your comfort. If her needs are exhausting all of your resources, then you are clearly not able to continue helping her without some help yourself. What more do you think you can do for her on your own? Your efforts have been very noble, but at this point you can’t even put a roof over her head or enough food on the table.
    Sometimes you acknowledge in you writing that you can feel very paranoid. You lash out against anyone who asks you to consider it, assuming that they have a malicious personal agenda to take away your child and make you suffer. Do you think that perhaps your extreme reaction to this is another manifestation of your paranoia? Your commenters make these suggestions because we see residential treatment not as a failure, but as a positive and logical next step in treating Jani. The suggestion of residential is not a jab at your parenting or your attempts to keep Jani home. It’s merely what sounds the most sensible, given your detailed accounts of her progress at home. Do you really believe that your readers who ask you to consider residential have some malicious, child-hating agenda? Does that sound rational to you? We want to see her get better, and for your family to struggle less.
    (continued in second comment)

  29. (cont’d)
    To suggest that parents who decide that their children need residential treatment have no souls or consider their children disposable is such an insult to them. You spend so much time railing against being judged, but how can you then so harshly judge parents who choose residential? Saying that they are somehow abandoning or discarding their child…I believe those parents have a VERY different take on it.
    An individual state’s Department of Health regulates and oversees RTCs. Additionally, RTCs are regulated by DCF and mental health agencies. They are licensed and certified according to each state’s regulations. To obtain their initial license, state personnel inspect facilities and review staff qualifications/training. To renew licenses, the facilities must be inspected, staff reviewed, records reviewed, and in some cases patients are interviewed. There are often unannounced inspections. Here is a nice report that compares how states regulate their children’s facilities, since it seems like you haven’t bothered to look it up and would prefer to make assumptions: http://www.samhsa.gov/News/NewsReleases/residfacilchildrenFinal.pdf
    Where is your source for RTC calls to DCF? I’d like to see it, and see what sort of calls these involve (as well as the outcome of these calls) and what type of centers these calls come from (child-focused? Adult-only? Private RTCs?)
    The McClean Hospital child in-patient program (Mass) is an example of an excellent program.
    http://www.mclean.harvard.edu/patient/child/cai.php
    In MA, residential centers accounted for 1% or less of the 2009 perpetrators of abuse and neglect. To contrast that, public schools were slightly greater perpetrators of sexual abuse than residential centers.
    http://www.mass.gov/Eeohhs2/docs/dss/report_child_maltreatment_2009.pdf
    Of course, you do not live in MA, but the point is that you cannot make these blanket statements about the current quality of the residential centers available to you without at least backing it up. You are still Jani’s biggest advocate, and you should therefore never send her to a facility that you do not find acceptable. But you cannot fairly determine the quality of that facility if you do not at least research it thoroughly. Vet the hell out of it…call for records, get the story on any and all allegations of abuse or neglect, visit it, search forums for people who have received treatment there (or who have sought it for their children), visit her as much as you can. But don’t just stubbornly sit back and refuse to consider a perfectly valid option for Jani’s health because it causes you discomfort to think of being separated from her.

    Note from Michael:

    This is going to be my last response to you, okay? Nothing personal but it is time to end this.

    1. Do you REALLY think I would let us wind up homeless? Why do you think I beg for money on here? Obviously I will do anything to prevent that from happening. I said what I said to illustrate a point.

    2. Insurance doesn’t pay for residentials at all. None of them do. Look it up. Certainly not mine.

    3. The Los Angeles County Department of Mental Health has offered us two residential placements over the past three years. Two. That’s it. One is in Texas and one is in Florida. Putting aside that both are Deveroux and I have personal stories from parents (including the Wohlenbergs, whose daughters were at Deveroux in Victoria, Texas) of abuses happening there, not to mention a lack of affection or anything even remotely therapeutic. Obviously, both of those options, the only two ever presented to us, are “unacceptable.”

    4. All local RTCs, in fact all RTCs in the State of California that Los Angeles County contracts with (you don’t get to choose, dear-your options are either to accept what they offer or decline) that will take a GIRL her age HAVE REFUSED TO ACCEPT HER. Their grounds? That she would be “too staff-intensive” for them.

    5. No parent “chooses” to send their child to residential. The fact that you think that, among other things, tells me you are not a parent. Sending your child away is like ripping off a limb. No parent does it by choice. They do it because THEY HAVE NO OTHER CHOICE.

    6. But the main reason I think you are not a parent is that you don’t understand what it feels to be one. I don’t mean this as an insult at all. It’s just that when you have children, you will do anything, even what appear to be massively stupid things, to give them what you feel is the best life possible. You will make any sacrifice. And yes, if need be, you will even die for them (although of course you hope it will not come to that). But a parent will trade their life for their child’s in a second. It is a basic part of our biology. Some of your arguments are cogent. Some of them are based on faulty assumptions about us (read my old blog, particularly March and April 2009, where we dealt with residentials). And some of them will fall on deaf ears because when it comes to being a parent, logic has nothing to do with.

    Best wishes,

    Michael

  30. Jani
    Michael… you need to keep fighting for Jani… but sometimes… people need to fight for themselves too… you have given everything up for her… You need therapy… family therapy…

    … I am a SUPPORTER of you… I’m not against you… I think what you are doing for her is great… but Bhodi is suffering… you are suffering and Susan is suffering (not to mention obviously your bank accounts)…
    Please don’t take this the wrong way… but… Jani is schizophrenic… and she will be for the rest of her life… and because of this she requires more care… care that you don’t have the funds to give… You are ALWAYS running on empty when it comes to money and funds… That is no way to live… Your son is still there and he needs his dad. But i understand that if Jani gets violent that Susan can’t restrain her… only you can… so that takes away from bhodi…

    I can only imagine how hard it is to live like that… And i’m glad Jani is doing better… But you need to try to step back… and think about this situation as if you weren’t in it..

    there is a family… with a schizophrenic daughter and a possibly autistic son… They have BIG money problems… and they have to live in 2 apartments to protect their son from their daughter…Someone always has to be with their daughter or she will go into psychosis… She needs constant care…

    here are some solutions i came up with…

    -you were on Oprah… if you still have contact with their people… DON’T ASK FOR MONEY.. ask for guidance… ask them if they know a foundation to help families like yours in bad financial situations.
    – Ask family members…
    -Put Jani in a Residential facility for a few months. pay for ONE apartment… Save some money up… (i don’t know how much you make so i can’t really make a chart for your paycheck and how much to save and how much to spend…)

    -ask the people at UCLA on how to get Jani more comftorable with being in one apartment… I’M NOT SAYING THAT SHE WILL ADJUST!!! she is schizophrenic.. i don’t know how their brains work and i’m no doctor.Try telling her that she has done REALLY good the last few months… and that you think that she is ready… as i said i’m no doctor… so take my suggestions with a grain of salt…

    – Listening to you go on and on about your money problems makes me sick to my stomach…I wish i could help.. but i don’t have 10,000 dollars just lying around… I have to tell you.. I’m only 15… but i’m going to ask around.. I’m going to ask people at school.. and businesses … There is always a way… ALWAYS!!!!…
    I will be praying for you!!!

    PS: Michael… please don’t threaten to kill yourself if Jani gets put into a residential.. YOU ARE THE SANE ONE!!!!.. every family needs at least one level headed person.. a person that can be in chaos and crisis all the time and still be able to think clearly and logically… Jani can’t do that… and i don’t really know anything about Susan… And you have to protect Bhodi… So it’s all up to you.. i know that is a tremendous amount of stress but you don’t have a choice… and you know that…
    the truth is… is if Jani DOES get put into a residential… you will find a way to keep going.. it will hurt for a bit.. but you will realize that Bhodi and Susan need you.. so you can’t go…

    I know i’m going to sound like the bad guy for a bit but just listen to me!!!
    I know you love Jani.. it is VERY obvious that you do… but you can’t just think about jani!!! it’s not all about her!!! I know the name… “Jani’s Journey” “the Jani Foundation” I know… but the world isn’t built for schizophrenic people (sadly)… Sure they have facilities and places… but your not willing to use those… nothing except UCLA and you therapy center…right?… ya… thats right!!!

    What about Bhodi?!?!?!? huh?… what about SUSAN!!??!?! huh?… Do you think you are the only one who has had to make a hard decision!?!?!?! WELL YOUR NOT!!!!!!!! Those parents who have kids in residential… they didn’t have a choice!!! It was the kid or their sanity.. the kid or their home.. the kid or the kid’s siblings!!!!… You have to make a decision!!!… It’s do or die now… It’s your choice at the end of the day!!!… and you shouldn’t be taking my advice or anyone else’s advice about something as big as putting Jani into Residential… It should be a personal choice.. that you and Susan truly discuss… Don’t just knock it off the table because the thought of having Jani not be around you 24/7 scares you… You have to think rationally… You have to think about everyone as a family… think about what would be best for the FAMILY .. not just for Jani… You are the man of the house… you are the leader (so to speak)… you need to protect you family…

    Note from Michael: Jani will not go to residential because existing RTCs will not help her. They are not therapeutic. They are holding tanks. Jani has to learn to live in the real world. She won’t learn that in a RTC.

  31. screaming in a sound proof room
    CHAOS!… chaos… chaos… your screaming for some help!!! “SOMEBODY !! ANYBODY!! PLEASE!!”… it feels like your dying.. or maybe just drowning … theres nothing you can do… “i don’t have it! i don’t have it”.. ” i can’t do it.. I can’t do it”… You need money… but but from who?… Your living it everyday!… the heavy heavy burden of paying rent for two… what are you to do?

    You post blogs begging… begging for money.. begging.. begging for someone to care… haha… It’s funny!…right?… no… it isn’t… Your going through real problems.. and no one will listen… no one will give you money.. your trapped … your drowning.. theres no one to save you…

    They have finally taken you now.. pulling you under water… there is no debris left from the ship wreck for you to hold on to.. They pull you deeper and deeper.. you can’t breathe.. no one will listen… no one cares… deeper deeper deeper deeper… your about to pass out.. you can’t hold on!.. you can’t! you can’t!! just a little longer you think.. deeper deeper…

    There is no breath left in you body to moan! … panic… panic… panic!! all of the sudden your alone… no one.. no one is there. no one there to care… no one there listen…
    you fear this is your doom. You hope it will be over soon. you scream all alone… all alone in a sound proof room…

    anyone who is reading this comment Please donate money to Michael and his family.. they really need it…

    PS: listen

  32. points of view
    mr. schofield,
    i have been following your blog for some time now. read and will continue to read every entry. i have even donated a few dollars now and again. i am not a person who lives with someone who has a mental disorder nor do i have one myself…so i cannot say that i know what your family is going through-i wouldn’t insult you or your family by assuming that i do just because i’ve followed your story. but i am the parent of four children and thus i do know about parental love and the utter devotion to one’s own. i felt i needed to say that as a parent i know it is a bewitching idea to entertain that we are the only persons who can help/guild/love our children in a meaningful way. we can get addicted to the idea of being “their saviors.” our identities get wrapped up in their successes and failures. i am certain with the countless disappointments you have faced with regards to services available (and not available) to your family, your feelings must be validated all off the time. “no one is going to save her so it is up to me.” i am not here to talk about residential, your apartment situations, your financial situation, medications, smoking or any other points of interest to your detractors… that is sadly a burden that yourself and your wife must make peace with and outsiders telling you what is best is utter folly. i did want to mention that your anger is frightening. god willing, your children will grow to adulthood and have some semblance of a real life. this is what i understand from your blogs, what you want for your children… to have a chance for happiness and a “normal” life…find meaning, love, independence and purpose in spite of their difficulties. i would like to remind you that your children are looking to you and your behavior as a model and road map to their future. i implore you to think of your future son as someone lashing out at people, burning bridges and cursing out whoever he feels has betrayed him-in the heat of the moment or not. look to your future adult daughter having a relationship with a man who treats people in that manner-maybe even allows herself to be the target of his rage. as a father, i would bet you would be appalled and terrified that your beloved little girl would ever entertain the idea of being with such a lout. sadly, these are the lessons you’re teaching her and your son about men, relationships and acceptable behavior. i am certain that these children idealize you and one need only to read a few of your blogs to ascertain how much you love them and are committed to giving them the best life possible. i am not on here to make you feel worse. i am on here because sometimes we need to hear a voice from someone who is not ensconced in the chaos. you might think this is silly and you are just thinking about your children now and can’t worry about their adulthood. but from reading your blogs i know you do think about their future- A LOT. i cannot imagine your current situation and the unbearable choices you have been forced to make. i admire your determination and dedication to your children. but please try to remember that there is a razor’s edge between being a militant fighter and being an arrogant bully. i have put my name on here and if you or your fans feel they need to attack me, so be it. sometimes unpopular things need to be said-this is a sentiment i feel you can relate to. none of us are perfect. I know how hard parenting can be and i do not have ill children to contend with. i wish you and yours all of best. i hope you can look at this message for what it is…not an attack, just a different point of view from someone with no hidden agenda.
    regards-
    michele stroud

    Note from Michael: I would hope no one would attack you for what you said. I guess anger becomes both a defense mechanism and a weapon to use. Unfortunately, perhaps, on occasion, I do resort to nuclear strikes when a precision attack would be better. But I am also human and in the heat of the moment. Also I don’t know where this idea has gotten around that I burn all my bridges. A few readers don’t like my methods. Fair enough. But this is who I am. Am I perfect? No, but I also think that sometimes anger has value. But I hear what you say. I don’t necessarily agree, but I hear what you are saying.

  33. Your gonna make it!
    I’m sure you can figure something out. Of course you can. If you need to move, move. The area can’t be the only area of all the world. The schools cannot be the only schools in all the world for her..There is lots of hope and lots of people who care. I think you will make it. What am I saying. OF Course your all gonna make it!!!!
    You have friends who are there for you. Lucky you have that. Imagine you did this alone. No one cared. I think you can make it through anything at this point. I do feel your pain. Been there too. Its time to move on, new chapter. Lets see what happens from here. xo Take Care!

    (wish I can help financially 🙁 sorry I suck in that department)

    Note from Michael: Thank you.

  34. A question about sleep patterns
    How do Jani’s sleep patterns work now? Can you overlap your sleep with hers somewhat, or does she still not sleep properly at night? Do her schizophrenia meds help her with sleep..? I hope so for your (& her) sake. Because otherwise I cannot see how her hallucinations would stay away long enough to even let her go to sleep. I admire all you are doing for your family.

    Note from Michael: Jani sleeps very well. The meds knock her out through the night. Right now, the hallucinations are generally in the background. They never go completely away but aren’t too dominant right now.

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