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The End (Updated)

Update: I know I have several pages worth of comments and I am slowly making my way through them when I can, responding to every one, good or bad. Right now I have only gotten through comments made prior to 2/20/11. So if you haven’t seen your comment come up yet it just means it is still in the que.

This is not going to be my last blog. Maybe I said that in the heat of my emotions. I don’t know. I will blog again. In a few weeks, I will write a new blog updating everyone.

Thank you,

Michael, February 25th

Original blog begins here-

 

It’s not looking good. Even if we manage to get out of this month there is next month, and the month after that. Every time I put out a blog asking for money I get many wonderful people who do give and a few who attack me or criticize me for asking like winding up like this was some how my fault. You do realize mental illness does this to families, right? It destroys them, but if you send them away then you have no soul anyway.  I have started looking around for other living arrangements.  Friends who are real estate agents are looking but they are not hopeful because the only regular income I have is from teaching the two or three classes I still can each semester and it’s not enough. I have talked to the leasing office here about moving back into a two bedroom and I could afford the rent, but can’t prove that I make 3X the amount of rent (because I don’t). They require this. Even if I could somehow fake that, I can’t pay the rent on three apartments simultaneously, which is what would happen during the change-over. A friend referred us to a real estate agent, swearing she could help us, but when I told her how little money we have, she didn’t seem very hopeful. She said, “Good luck” like people do when they know you are screwed, as if they are hoping that maybe, just maybe, the bullet might miss you.

Jani is already freaking out at the idea of moving and will be probably be back in the hospital soon. So all of you who said she would “adjust” fine can go fuck yourselves. She’s not. She is regressing badly. I am not sure she will make it through this. She has done so well and gained so much of her life back in the past two years. Now she may lose it all.

I have to stop this blog for the time being. I have to focus on her and to try and save her. The stress of trying to get the money to pay rent has not helped her, but at this point I don’t see any way out. We need deposits and proof of income exceeding what I make.

So let this be a lesson to you: Nothing is ever as easy as you think it is.

 

I also have to stop because I just can’t deal with the handful of people who want me to fail. They are a tiny minority, but for some bizarre reason they want Jani in a residential. It will never happen.

 

My deepest gratitude to those who helped us. I will still do my best to help those with mentally ill children. Go to www.facebook.com/thejanifoundation. Under the “resources” tab of this website you can find our private “Parental Support Group” for parents with mentally ill/spectrum children.

 

I am not changing my ways. I will remain militant in my fight (sorry, Zell). I have to. Nobody else is doing it.

I just… I just can’t bring myself to write anymore. Not right now. Maybe in time but not right now.

 

-Signing off,

 

Michael Schofield

February 19th, 2011.

74 comments on “The End (Updated)

  1. Why do you not qualify for housing assistance?

    Note from Michael: I have no idea. Probably because there is no Section 8 housing as they call it here in California in the Valencia area (wealthy area, or it was before the economy tanked) and if we move out then Jani loses her school. And that is NOT going to happen. She needs the Newhall School District. They know her. She knows them. I will not take her away from that no matter what I have to do.

  2. You are in my thoughts.
    Continue doing what you need to do Michael. You are doing all the right things and the best you can do. I am thinking of you and your family.

    Andra

    Note from Michael: I know. Thank you. I guess I am taking “anon/Concerned’s” comments to personally (see previous blog “Life on Mars”). I don’t usually react to my critiques like that. I have developed a thicker skin but I guess I feel weak right now so this person is getting to me. It is like he/she is kicking me when I’m down. I just have to return to ignoring people like that and focus on what is important, which is my family and the cause.

  3. I am so, so sorry Michael. I wish more than anything that I could help you and your family. You’re all in my prayers, all the time.

    Note from Michael: I appreciate that, Angie. I really do.

  4. Your last blog is heartbreaking. I first saw Jani’s story on Discovery Health and 20/20, and I was drawn to your beautiful, courageous little girl. I’ve followed your blog regularly for about a year, but haven’t commented until now, as I can’t begin to understand what your family has been through. Whenever you post an update, it’s a relief, because then I know Jani is alive and okay. I imagine the majority of your readers feel the same.

    I own and operate group home for developmentally disabled adults, many of whom have been abandoned by their families. Jani is so fortunate to have parents who love her unconditionally and go to the ends of the earth to care for her at home. I am in awe of your strength. All the people who are touting residential treatment don’t know what they’re talking about. There’s no abuse or neglect in your home, and Jani isn’t begging to be locked up. She’s only eight years old, and without her family by her side, she would have lost the battle with her disease.

    It sickens me that money is even an issue for you. If I had the means, I’d donate whatever your family needs. You’re in my prayers.

    Note from Michael: Jani is still alive and doing well. Thank you for your post. It made me realize that it was wrong of me to leave everybody hanging like that.

  5. I Know.
    I know.

    Our situation is not quite as desperate; but my mom and I are months behind on the rent. The only reason we are still here is because it is a private apartment, and the owner is a childhood friend. We moved here after our last living situation failed, partly because of my dad’s drug addiction and party because the insurance wouldn’t cover my entire hospital stay tainting our financial situation.

    We, too, have had to make choices between food and the electric; between food and heat; between food and _____. Or between my medication and food; between my medication and heat; between my medication and ________. Or any other combination. Even if you take away my illness, my mom just doesn’t make enough to cover the things that we NEED. For years, she hasn’t been able to afford her inhalers (asthma), either replying on samples or borrowing a friend’s. When I was twelve, she had a major asthma attack that almost killed her. I was the only one home, and I was battling a depressive-psychotic episode. It amazes me I was able to call 911 at all. A few years later, she still can’t afford her medication, even though she works five jobs as a single parent and I now have medicaid. So, every week, she is faced with a choice: medicine, rent, heat, electric or food?

    Ours are the stories that the voters and legislators forget. The ones they push away. The ones they hide. The ones they turn up their heads to.

    I suppose, what I am trying to say is, is that you don’t have to defend your choices to me. Do I agree with everything you’ve done or continue to do – such as smoking? No, not really. But I also know that you can’t recover from any addiction when you’re in the midst of your daughter’s psychotic break. And, is it possible Jani may eventually adjust? Yes, I truly believe she could do it. But is a major regression the time to move out of state? Not a chance.

    I moved five minutes away in seventh grade; but I was severely anxious, irritable, manic and psychotic (mixed state). My mind spun out of control. My thoughts slashed the record it was playing, and the fears, anger and just…all those thoughts Would. Not. Stop. It took months to recover.

    To be honest, I feel helpless. My family is broke. I don’t have a job.

    If I could, if she could, I would fly you out here. There is an apartment on the same property . I would watch Jani if you were here. Though not as severe, I do understand her. I understand psychosis. I would stand there as she threw things at me, and I would tell her that it doesn’t upset me; that I know this isn’t her. I would make her picture books of her world*, so maybe there would be something she could actually read. I may not be perfect, and I may fail; but I promise, that if there was something I could do, I would do it.

    And I would tell you that, if you are forced to move out of state, there are really good options of care. Massachusetts General Hospital, John Hopkins, New York-Presbyterian University Hospital (Columbia and Cornell), Yale, even. But then, I realize that I, and these hospitals, are east coast hospitals. We don’t exactly get a lot of sun. I realize that UCLA is consistently ranked the best on the West Coast. And you can’t come to the East Coast, no matter how good our hospitals are (and New York Presbyterian REALLY is a good hospital) . If Jani can’t stand a California winter, how will she weather a New York storm?

    I have no answers. No quotes to neatly sum up my point. I don’t even have a point: just a lot of love, understanding.

    E-mail me anytime, Micheal. If you have a question, or if you need to rant…you won’t scare me away. Because I understand. I get it. This offer extends to all other families, as well.

    Allow my e-mail to be posted. It’s OK.

    doveerikams@gmail.com

    erika
    w/ Schizoafftive Disorder

    Note from Michael: Dear Eri, I am so glad to hear from you. You are going through exactly the same thing and you are incredibly important to the Cause because you can articulate the things that Jani cannot yet. You are her voice, too, just as much as I am. Reading your financial struggles, I know the feeling of desperation, of not knowing what the hell you are going to do. The reason I have been gone for awhile is we actually decided to bite the bullet and move back into a single apartment, a two bedroom. We wanted to stay in the same complex to minimize the impact on Jani. It was also set up so the bedrooms were at opposite ends of the apartment. Jani would get one room and Bodhi would get another and Susan and I would continue to be “staff” (as she calls us) alternating bedrooms instead of apartments. It looked like it was going to happen but then our credit got rejected. So we are back to square one. We won’t be on the streets because we will be able to stay in our two apartments. Maybe it is for the best. Jani seemed to handling it well but today got so psychotic we thought we might have to go back to the hospital. Jani hasn’t been in the hospital for four months. She threw a cup at Bodhi today. So maybe this is for the best right now.

    Eri, I want to make you a promise. Once my book is published and I get some more money, I will pay for your mother’s inhalers. That is a promise. It is something I want to do. As young as you are you have helped me through some tough times (because you are brilliant and empathetic) and as soon as I can, I will do that. It’s not an empty promise. I don’t make empty promises. And I know Jani would be fine with you. She wouldn’t hit you, actually. She never hits kids like her. She would instantly recognize that you are like her. I think you would get along great. I think she would love you.

  6. Sad for you
    sometimes I think my life is so hard… then I read your blog and everything falls into perspective.

    I tell everyone I know about this blog, probably because I want them to step out of their comfort zone and really, truly experience life.

    you are an angel, and one day, this will all be rewarded.

    I pray that you don’t stop blogging, but understand why you will have to make that choice.

    I wish there were something I could do to help. i can promise you this- if I ever win the lottery…you will also win.

    Note from Michael: Thank you, Jennifer. No, I am not going to stop blogging. I think I said I was going to stop “for now” but honestly I don’t know what I said. I was in a pretty bad place then. I will blog again. And I don’t want to be rewarded. I want to change the system so blogs like mine aren’t needed anymore. I want mentally ill children to have lives fulfilling and happy. I want to help parents. All I want for myself is to be able to pay the bills. I have no ambition or desire for major financial gain. Everything that I make off the book will go to setting up services for mentally ill children and their families.

  7. Supporting you
    It is my first comment, although I have been following Jani’s journey since your old blog. I am a 24 year old collage student with múltiple mental illnesses since childhood. I wish I could offer financial support, but I am here for any moral support you may need along the way. I also looked up online and the LA Foodbank’s website (address) bella has a pantry locator for you to just easily enter your ZIP code and find the nearest in your area. Hopefully, that could help your family at least save or not have to have as many incidents like the one you mentioned in aprevious post about being in line at the groccery store. Also, most chuchee and faith congregaciones have food and clothing assistance (at least in texas) and are available to anyone in need regardless of their religious beliefs or lack of them. I would try going to the food pantries and stopping by a couple chuchees, synagogues, etc it can never hurt. If I can help one day economically, I will.
    http://www.lafightshunger.org/

    Note from Michael: Thank you, Lanie. I appreciate any help. Right now moral help is worth more than gold.

  8. Just to clarify your comment, I’m not the same person as “concerned.” I think it was a dick move for her/him to notify CPS (on what grounds? It doesn’t make any sense), and for him/her to suggest that if you just got rid of cable and other “luxuries,” everything would be fine is absurd (I grew up poor and you could pry my cable from my cold, dead hands). I’ve only commented three times: once because I was confused about what you actually wanted from your local health services, once to ask if you had considered monetizing your blog, and the last time in response to your comment that you would rather see your children homeless (which yes, I believed you meant, as I’m sure do other people, which is why we felt the need to point out to you how horrible that statement is). My intent is not to “kick” you, but to tell you that to a removed party, your actions/statements seem to be causing you more difficulties than what you already have(ie, your statement that you would choose homelessness, or the fact that you are already facing debt and eviction for keeping two apartments). Sometimes it is helpful to see things through someone who is less blinded by emotion.

    Anyway, thank you for actually making some clarifying statements in your last response, rather than personally attacking me or assuming that I have some sort of wish to see harm come to your daughter. you are very clearly stuck between a rock and hard place due to the broken mental health system in this country, which was always obvious. I only voiced my opinion because, from all of your writings, it truly sounded as though you had residential treatment available to you and were doggedly refusing to even consider it. It’s also extremely upsetting that you have heaped insults upon people who have sent their children to residential (no soul, failures, etc) while demanding that no one second-guess your decisions.

    I hope that Jani continues to improve and that you eventually return to update everyone on your housing solution, especially since I’m sure the people who gave you money would like to know how it has helped you.

    A final word, perhaps you could send some emails to clinical researchers who specialize in childhood schizophrenia and see if any are interested in seeing her through a placement at a particular program that they work with. She’s such a rare case, I imagine that someone might be willing to devote part of their grant to her costs just to work with her. Someone at the NYU Child Study Center comes to mind, for example: http://www.aboutourkids.org/about_us/faculty_staff/leadership

    Good luck.

    Note from Michael: Yes, I know you are not the same person. Although readers cannot see emails, they are required for posting so I know you are not the same person. I have started to wonder if maybe you have a child in residential and so feel like I am attacking you. If that is the case, I really don’t judge parents who send their children to residential because like I said in my last response to you, I know it isn’t a choice. No parent would ever willingly do it. What I judge is the system that forces parents into that decision, not the system itself. It is possible to have 24 hour 7 day a week in home support, but that is expensive and nobody wants to do it. I really have never insulted parents who sent their children to residential. I have insulted peopled like “Concerned” who want me to do it with no concern for Jani’s welfare.

    “Concerned” has had an axe to grind with me for a while. He/she said they called “protective services.” I doubt this, both because they don’t even know what child protective services is called in LA County (The Department of Child and Family Services), and because I can’t for the life of me figure out what the reason for doing so would be. At any length, nobody has come out, but it wouldn’t bother me. We have been investigated by DCFS three times and we just cooperate because we have nothing to hide. If you can’t tell from this blog, our life is an open book.

    Anyway, I do have a tendency to get melodramatic and that’s what I was doing when I was saying I would rather be homeless than put Jani is residential. We won’t be homeless. We will never be homeless. And as you saw I went through why Jani isn’t in residential and it isn’t all because of me.

  9. Michael is absolutely right, everyone. Homelessness is definitely better than residential treatment for a child suffering from mental illness. And it will be okay, because the Schofield’s have two cars, so they can continue living separately! I’m sure keeping turtles alive in a car might be difficult, but, dammit, they’ll find a way!

    Why should Michael have to show us actual evidence and cites of abuse in RTC? We should all just take his word for it, because Michael has a MASTERS DEGREE and he really knows more about everything than anyone else ever! And, really, isn’t it better that a child be abused by a loving parent (shaken as an infant, hit as hard as a grown male can hit, starved, and made witness to spousal abuse, etc.) than strangers? I think we can all agree, that’s the way.

    No, it’s really best that Michael hold on to his unreasonable expectations and principles than actually doing anything that might benefit his children. That’s what loving parents do! Gotta hold on to that integrity. And, after all, Michael is doing plaything he can to assure his family’s survival. He’s begging strangers on the Internet for money! What more could be asked of him? Surely he can’t be expected to pay his own bills?

    But before I go, just a small hint to all of Michael’s dear readers – Google Steve Truitt. That man don’t come cheap.

    Note from Michael: Sigh…

    First, to everybody else, don’t bother replying. I banned this user’s IP address. I was just getting tired of dealing with him or her (suspect a him) when I have real people I need to help.

    But to answer his points, which I have already done….

    1. You keep bringing up that Master’s Degree. Does that threaten you somehow? It appears to. Even in your other comments and other names that you have used to attack me before, you bring that up. I don’t think anybody in their right mind thinks an advanced college degree automatically makes one worth listening to or automatically a better person. I have it because I needed it to teach. I needed it to work. I still need it to work. It was the only way I could be an instructor. But I can assure you when you get an advanced degree, you are still you. I am still me. What I write, what I believe, would not change if I only had a high school diploma. My level of education gives me no inherent ethos (look it up).

    2. You want evidence of abuses in RTCs? Go here: http://www.facebook.com/janifoundation. Lots of stories there of abuse in RTCs, most of which are quite recent. Call it abuse, call it “substandard care.” It’s all the same thing. By the way, I don’t right those posts. The Jani Foundation Facebook page is an open page. People post their experiences and struggles.

    3. You are still dragging up the old “about me” page on my old website http://www.januaryfirst.org, aren’t you? When you brought that up, it was clear that your purpose was not defend residentials. It was to smear me. But again you forget that you are not exposing anything. Everything you think you know you know because I made that information public.

    a)Shaking her as a baby: Yes, that happened once. I have to live with that. She wasn’t sleeping at all but that is no excuse. You are free to attack me for that. I deserve that. However, I would like to think I have done more good than bad in the world.

    b) “Starving her:” That never happened and I have explained that before. Jani was and is a picky eater. Doctors, back when they still thought this was behavioral, would tell us to put food in front of her and if she didn’t eat it tell her that was all there was. If she still didn’t eat it, send her to bed. Their belief was that eventually she would give in once she got hungry enough.

    She didn’t.

    She started to lose weight. So we stopped. And now we feed her whatever she wants.

    c) “hitting her as hard as grown man can:” You really believe this? Jani saw her pediatrician like clockwork growing up. After all the doctors, therapist, psychologists, and psychiatrists who have seen Jani, and three different hospitals, which by now must number in the hundreds, you don’t think somebody might have noticed at least a bruise? And I would think it would have to be pretty noticeably. I weigh 180 pounds. Jani now weighs sixty.

    I wrote that because I spanked her once and that is what it felt like to me: it felt like I was hitting her “in an impotent rage” (the exact words I used).

    I wrote what I felt. You took it as the absolute truth. If it was, Jani would be dead. You’ve seen the pictures. See any bruises? The kind of abuse you describe is not that easy to hide.

    3. And lastly Steve Truitt, as if that somehow proves whatever you are trying to prove, which is I guess this is all an act. Steve is an old friend of ours, going back years before Jani was born. I have no idea what you mean by “that guy doesn’t come cheap.” I don’t pay him. Never have. He does what he does because he knows us and cares about us. I’ve met his children. He’s been to Jani’s birthday parties. Does he deserve money? Absolutely. He is tenacious supporter of us and he zealously guards us from questionable media appearances. He is a good guy.

    Okay, hope that clears things up for you.

  10. Michael – you claim that any deviation from Jani’s routine will cause her to break down, and that part of Jani’s routine is (or was) going out for lunch, daily. Have you continued this routine? It would seem so, as you claim Jani is doing well. It’s nice to see that you can afford daily trips out for Happy Meals while facing eviction, struggling to pay bills, and needing complete strangers to support your family.

    Note from Michael: When we can. I am not going to bite. Say what you gotta say. You’ll just have to do it from a new IP address because I banned this one. Only because you are wasting my time.

  11. Weird, the first time I read your blog is the last day you write it. Well for what it’s worth, here’s what I think:
    1) Don’t let the bastards get you down.
    2) Don’t waste your time on people who have NO IDEA WHAT IT IS LIKE NOR WILL THEY EVER. Not. worth. it. (except for the vent factor)
    3) You MUST believe that you are doing your best and do find some tranquility in that belief.
    4) You are a remarkable father, your wife is a wonderful mother.
    5) For every idiot out there that judges and criticises there are a bunch of non-idiots that are behind you all the way. Idiots just like the sound of their own voices.

    Oh and about the “friend” you offended on Facebook, if he/she knows you and your family situation so well (which one would suppose) the he/she ought to put 2 brain cells together and figure out that people who are under such constant stress sometimes act certain ways or say things or write things that other people may not. And as a friend he/she should not get huffy and defensive but should reach out. Anyway refer to points 1 & 2 above.

    GOOD LUCK YOU ARE IN MY THOUGHTS.

    Note from Michael: No, this won’t be my last blog. I owe it to a lot of people to keep it going as a voice for childhood mental illness. I can’t be selfish. A new entry will come, probably in about two weeks.

  12. I’ve been reading your blog for some time but I’ve never posted a comment. I so admire your determination and fierce devotion to Jani. She is very lucky to have you and Susan, just as you are really lucky to have her. I really hope everything works out in the end.

    Note from Michael: Thank you. I am sure it will.

  13. So sorry
    Dear Michael,
    I don’t have the words to help you. I only hope for a miracle. You are doing the very best you can which is more than a lot of people could even comprehend.
    As far as “concerned” and “anon” and anyone else who is too cowardly to use their name, just ignore their posts – don’t read them – don’t dignify them with a comment back. You don’t need any more negativity around you right now. Positive energy ONLY should be the focus.
    Please keep us posted as you can –
    Rhea

    Note from Michael: Thank you, Rhea. Will do.

  14. I’m sorry. I really am. We may not personally know each other, but I can still feel your pain. Don’t give up, Michael. I know that’s MUCH easier said than done. But I just feel compelled to tell you. Don’t give up. Keep trying, because there is no other choice. Not really, not when you love your family as much as I know you do. You ARE stronger than you even realize. And somehow, everything will be ok. I wish I could offer you more than this; a few lame words and cliches left on a blog post. But it’s what I have to give. Anyway, I’m thinking about you.

    -Katie

    Note from Michael: Thank you, Katie. It isn’t the words. It is the feelings behind them that matter.

  15. Poor Bodhi. The kid never even got a chance at a normal beginning of life, because it’s Jani, Jani, Jani. And I understand that Jani needs help, but no matter how much you try and convince yourself that you can help her, you can’t. NEWSFLASH, Michael. Jani needs Residential. And the only reason you won’t put her in there is because you’re selfish. Parents are supposed to be selfless, and do what’s best for their child. You’ve never even tried Residential, so you can’t say that it wouldn’t be a good thing for her. It would also give her a routine and stability, and don’t you claim that that’s what Jani needs? It all comes down to you being selfish. And I’m sure you’ll want to point out to me all the selfless things you’ve done in the past, but that doesnt cancel this out. Not one bit. My heart breaks into a million pieces for Bodhi, because this is not the kind of life he deserves. He deserves two parents, always, together, and he deserves to be put first sometimes. But he’s always second to Jani. And I know how that feels. I was always second to my brother because of his impairment, and it sucked. I would get dropped off at relatives or friends while they went to doctors. Just like Bodhi gets dropped off. And honestly, when you said you couldn’t even remember what Bodhi looked like, I was absolutely furious. And I still am. Because that’s not acceptable, coming from a parent. Is he really that neglected by you that you can’t remember anything more than basic details about him? You’re lucky you still have custody of your son. My heart also breaks for Jani as well, because she doesn’t deserve to go through this, and I wish I could make things better for her.
    I don’t know why I am even going to say this next bit, because I do not support anything except Jani going to residential, but have you considered two hotel/motel rooms with an adjoining door? Living out of a hotel with a P.O. Box for a mail box isn’t ideal, but neither is your current situation. Just a thought…

    Note from Michael: If the situation was reversed, I wouldn’t send Bodhi to residential either. But, no, as long as I can keep both of my children out of residential, I will. That is my job. If you think Jani needs residential after reading my last few posts, then what is going on is you are projecting your own feelings of anger. Which is sad. It really is. I feel sorry for you. Because if you have that much hate inside you, if you are unable to see past what you didn’t get (and I don’t disbelieve that you had to sacrifice) and see that you are truly lucky that you don’t have an impairment like your brother, then you are deserving of our pity. You talk about me being selfish. You’re angry because you had to play second fiddle to a sibling with a disability. That’s selfish. That’s sad. I hope you are in therapy.

  16. I WON’T!!!!
    I won’t except this.. that u have to live this way!!! i don’t care if you stop writing blogs!! i WILL find a solution to your money problems!!! I WILL!!! i will look for financial aids and state laws of California that deal with money and mental health care!!! I WON’T EXCEPT THIS!!!!!!!!!!!!!!!!

    Note from Michael: I am not going to stop writing blogs. Just blogs begging for money. I was getting tired of that.

  17. open enrollment
    Have you looked into Open Enrollment? It might be a way to keep Jani in her school district if your family has to move out of the area. According to the California Department of Education website, open enrollment “allows students the option to enroll in a different school with a higher Academic Performance Index (API) than the pupil’s school of residence.” Here is the URL with more information http://www.cde.ca.gov/sp/eo/op/.

    Anyway, I’m not sure if this program can help or not, but it might be worth looking in to.

    Note from Michael: Thanks but it does not apply to special education.

  18. There is no perfect way. You are fighting the very, very best you can.

    I wish you all some peace today.

    Amy
    Logan’s Mommy

    Note from Michael: Thanks, Amy.

  19. Heya
    Michael, I can’t really make anything better. I can throw a few bucks your way but I dearly wish for a magic wand.

    That said, your experience is simultaneously the most depressing and hope-inspiring things I have ever come across.

    Don’t stop writing. It helps you, and we are here for you, in whatever capacity we can be.

    Note from Michael: Thank you. I don’t intend to stop writing. I guess I said something to that effect but it wasn’t permanent. I am just taking a break to figure things out.

  20. Stay True
    I have learned through my own family struggles that everyone can offer advice and pass judgement however as the old adage states “Until you walk a mile in another man’s moccasins you can’t imagine the smell” and no one but you and your wife will ever know what is best for your family. Whatever path you choose to follow will be the best, just be sure to stay true to who you are and not allow the unaffected bystanders effect your decisions, this is your family, not theirs. They do not have to cope with the dynamics of having a mentally ill child and the ramifications that come with it. Everyone can offer their solution or quick fixes but it is true, unless you are in my shoes and have had to deal with what I have had to deal with, you will never know how I have come to this decision.

    You have strength, much more than most, keep steadfast in your convictions and you will succeed to your goal. In my opinion as a bystander, you already have, you have given Jani a life which most would have not. Many other parents, understandably, would not have been able to maintain this life for their child as long as you have. It is an obvious struggle, and I commend you for your choices. I also commend parents who choose to send their children to a residential treatment center because that is what is best for them. Each family dynamic is different, and I do not think that any family would ever make these decisions flippantly which is why I get irritated for you when I read these comments, while I don’t and cannot understand what you are going through (and I know they cannot either) I do not pass judgement because I know I am not equipped to understand the situation.
    Ok. Enough of my tirade. I wish all of the best for your family. I truly wish I had financial stability so that I could make a donation, however I am a student, unemployed, and living on my own. After rent and bills, I have a meager $130/month for gas, food, basic necessities etc. When I get a job, and good Lord that better be soon, I pledge to make a contribution to your family. I just hope that others who are able to, WILL help, for I know it is not the future promises of help that will get you through till tomorrow.

    I know it is a lot to ask, but please try to stay strong, Jani, Bodhi, and Susan all need you.

    Much love,
    Veronica

    Note from Michael: Thank you, Veronica. We would not have been able to do with it without the generosity of spirit of people like you. It is increasingly seeming like my asking (generally) for money is what has been rubbing people the wrong way. I am not sure why it bothers them so much. I guess that is something for them to look at it. This is the decision I made to keep my family together.

  21. Michael,

    I’ve been following this blog for a little while, and I pray for you and yours every day. I am so, so sorry things are so rough. I just gave a tiny bit through paypal and so wish it could be more, but I do promise the prayers won’t stop.

    Note from Michael: Thank you.

  22. ooh. i’m praying for you! and while i’m at it… a couple quotes?

    Who indeed can harm you if you are committed deeply to doing what is right?
    – I Peter

    It is not the critic who counts, nor the man who points out how the strong man stumbled, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs and comes short again and again; who knows great enthusiasms, great devotions; who spends himself in a worthy cause; who, at the best, knows in the end the triumph of high achievement, and who, at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those timid souls who know neither victory nor defeat.
    – Theodore Roosevelt

    Great spirits have always encountered violent opposition from mediocre minds.
    – Albert Einstein

    Difficulties are meant to rouse, not discourage. The human spirit is to grow strong by conflict.
    -William Ellery Channing

    In order to be walked on, you have to be lying down.
    – Brian Weir

    There are two ways of meeting difficulties: you alter the difficulties, or you alter yourself to meet them.
    – Phyllis Battome

    i hoped i’ve helped you…

    Note from Michael: Yes, you have. I am particularly fond of the Roosevelt quote, but they are all great. Nothing like reading the great orators of history to pull me out of a funk. Thank you.

  23. Do what you need to do, Michael. I’ll really miss your blogs, but I can’t imagine how you’ve managed to keep up with them as long as you have, with everything going on. I’ll keep your whole family in my thoughts.

    Never stop fighting

    Note from Michael: Answer? Not sleeping. But this is not going to be the last blog. I just need a break.

  24. Freedom…to ignore
    Hi Michael,

    One of the great things about our country is that we have the freedom to say what we want. Even better? The freedom to ignore the people who sap us of our strength (and you have more strength than many people I know). If you don’t read the negative comments, then they can’t drain you. There is such a huge difference between constructive criticism, and a desperate need to bring someone else down, as anon is doing. I will continue to pray for you and your family, and I hope that you can take back the energy that anon (and some others) is so desperate to take from you. Just don’t ignore the people who believe you do know what is best for your family. I hope the donations I sent will help.

    Michelle

    Note from Michael: Thank you, Michelle. Usually I can ignore them. I’ve been getting them for two years so it is not like it is new. I think I am just overly sensitive right now.

  25. I’ve never replied before or at least I dont think I have.

    If I donate will u still get it even if you are not blogging? I know I wouldn’t be able to offer much but maybe it would help you a little bit.

    I also hope there will be someone to keep up to date on Jani. I have followed her story for a while now and I have grown to care for both Jani and your family even though I do not know you. I only wish I lived closer to you
    (I am in England) as maybe I could have offered you physical help.

    Michael – I admire you. Everything you do for your daughter and your family. You hear so many stories of absent fathers but so rarely about the fathers who give everything for their family.

    Your family are in my thoughts.

    Note from Michael: Thank you, Kat. I am not stopping blogging. I clearly just needed to take a break because I was getting burned out for many reasons.

  26. Micheal,

    I really commend you for all you do for your family. As a social worker in a children’s ER I see many kids with mental illness. Very few of those parents have the stamina and foward thinking to put the needs of thier children first. You are an inspiration and I will miss your blog. I hope you reconsider keeping us, your inspired and supportive online community, in your life.

    Note from Michael: Well, stamina is the issue, isn’t it? Even I burn out from time to time. Yes, I will be blogging again in the near future, probably in a few weeks.

  27. Jani Updates
    If anyone wants updates on Jani, you can go to:
    http://www.youtube.com/user/channel4jani

    Jani is doing well in school at Newhall School District, spending 2 hours a day, instead of only one.

    And hats off to everyone who donated funds. Jani has her castle for
    another month.

    Note from Michael: Thank you, Carl, as always.

  28. you do have friends michael, who read this blog, make donations and are praying for you and your family. take the time and do whats best for your family, know that we, your readers will always hold jani, bodhi, susan and yourself in our prayers
    always thinking of you
    rcf

    Note from Michael: Thank you. We are not going anywhere. We will be back.

  29. Michael,
    You may or may not remember me….I was an avid follower of Jani’s Journey and part of the parent support group (although I am not a parent) in November-ish 2009. I thought of Jani when I stumbled upon a news article about a 6 year old boy involuntarily committed to a psychiatric hospital by his elementary school following a “disturbing” drawing he made, (not that that has anything to do with Jani- just the young age…) I was talking about Jani’s story with some staff members at my current transitional living program earlier this evening and we watched the LA times video on vimeo. It got a bit heated. The nurse of the program (well meaning, but insensitive) was making ridiculous comments about how its irresponsible to diagnose schizophrenia that young, how unimaginable it is to be medicating and Hospitalizing Jani (and how hospitalizing her could only beneift you as the parents to get some rest, not her) , that she can’t possibly be a danger to herself or others, why don’t you just put her in residential, and on and on. One of the other staff members concured that medicating a child that young was unthinkable. the remaining staff memeber just showed a lot of empathy for your whole family. And i sort of thought “Shit. If i’m getting this worked up over conversing about Jani and defending the Schofield’s, what is it like for Michael?” I just give you a lot of credit for dealing with the ignorant bullshit that must come your way. Not that it matters what I think, but I think you have made a lot of right choices. You’re doing the best you possibly can, and sometimes its not enough, but at least you can know you’re doing that much. I’m just so fucking angry for you right now. I know you don’t need anger, but I’m angry anyway, not just for you but for me. She’s a psychiatric nurse and she doesnt even know that the DSM doesn’t place age restrictions on the diagnosis on schizophrenia. How can she not understand why you went public? you’re lost and you’re looking for help. you’re alienated and you want people to understand. You were alone and you want to make others feel less lonely. its heroic. tragic that you even have to fight this battle, but heroic that you are. I have to go get a flight, and i don’t know if you will even be chcking these comments now that your not blogging currently. but i guess the point of this rant is: you’re in my meditation and you’re in my prayers.

    Note from Michael: Yes, I remember you, Megan. I am glad to know you are doing alright. I got a bit worried about you when you disappeared. And yes, you are right on all points.

  30. I have been following your blog for a couple of years now, have prayed for you and your family, have shared your story with countless others, and wish all of you the very best. In recent months, I’ve felt frustrated more and more when reading your blog. I haven’t said anything about it, but if you’re getting frustrated with the comments you’re getting, to the point you might stop writing, I’d like to offer an observation.
    Whether you mean to or not, you’re coming across as someone who has a thousand reasons to remain helpless. I’m certainly not suggesting that you are empowered to have complete freedom in your life, but for every option you have, you have a thousand reasons why it won’t work. Move to a less expensive neighborhood? You “can’t” because of the school district. Move to Arizona and get help from your family? You “can’t.” Combine your apartments into one that you can actually afford? You “can’t.” Heaven forbid anyone suggest residential treatment, which is the option many other families choose, even loving families. You “can’t” do that either, for myriad reasons. You may not realize how insulting it is to other families who have chosen residential programs when you write them all off as abuse-ridden prisons. Get another job? You “can’t” do that. Give up your pets so you can have more housing options? Nope, “can’t” do that, either.
    I’m not saying you should do any of those things. But own up to your choices. You didn’t choose this illness for your daughter. You choose an unaffordable, unsustainable living arrangement. You’re not a victim of circumstances there. You may well indeed be making the best choice for your family. But when you make every other option sound impossible, instead of something you choose not to do, you are coming across as someone who is choosing to be a victim. You say you’re “fighting” but it doesn’t look like it. It looks like you’re surprised every month that you can’t afford your home, and then ask for money instead of seriously considering alternatives. Again, those alternatives may not be better than what you have now, but your “that won’t work because. . .” response to every logical solution is turning loyal followers and supporters into the mean-spirited commenters who are upsetting you.
    Lashing out at people who support you or complaining that donations are “slowing to a trickle” is making you look like you feel entitled to something, particularly your status as victim. I don’t know the woman who’s watched Jani every Sunday for 4 months, but I’d think you’d want to bless her and celebrate her, instead of dismissing her selfless support with “4 months isn’t enough” People are always flaking out on you? Perhaps. Maybe you are draining them as much as Jani is. Have you had a friend or a loved one who has been in a low point in life, but who won’t find his way out? The friend who has a thousand reasons not to leave her abusive husband? The friend who has “tried everything” but can’t quit a particular addiction? No matter how much you love, sympathize with, pity, understand or pray for that person, if he’s determined to be helpless, it drains you. I don’t know if you’re that guy. I don’t know you personally, and cannot even begin to imagine how difficult things must be for you. But you choose to play out your drama on a public stage, and whether you mean to or not, you’re alienating people who care about you, and from whom you ask for money, time and support.

    Note from Michael: Do you really expect me to do any of those “options” you listed above? Get rid of Jani’s pets? Great idea. I guess we have different definitions of what constitutes a “logical option.” Which is natural. We don’t live the same life so there is no way you can understand that what seems like a perfectly logical option to you is not to me. It’s always a matter of perspective, isn’t it? I will admit that my last few blogs have focused more on financial issues than I would like, but that is what I had to do. Did I enjoy begging? No. I suppose if you want me to “own up” to it, fine, although I fail to see how I don’t. It seems like you are projecting feelings here. Also don’t assume that there are “many” who feel like you are. Maybe there are and maybe they aren’t. Who knows. Ultimately I don’t really give a damn. I am not here to please you or any of my other critics. This is the underbelly of mental illness in America. This is reality. I am not just afraid to beg when I have to. I don’t know why this bothers people so much. If you don’t donate money, why should you care? And people like you never do. They are just the armchair quarterbacks. Praying is nice because then you don’t really have to do anything.

  31. I have been reading your blog for about a week now. I feel connected to Jani in a way. Remember to make Jani feel as normal and sane as you can. She will be made to feel crazy by a lot of people eventually. A lot of people might not understand her but she is going to be a very special person one day. I would love to meet her and be her friend. I also wish I could donate but I myself am tight for rent. If I could I would pay for your whole rent & more but I can’t. I hope the best for you, as dumb as it sounds its the only thing I can offer. What an odd world.

    Note from Michael: I hope she won’t be made to feel “crazy.” That is why I am trying to change the world around Jani, more than her.

  32. Sad
    This is so sad, we miss you already, miss hearing how your family are doing. Please dont look at this blog as the end, try and look at it as a new chapter. I’m praying for you and your family and pray that someone comes into your life that can change your world.

    Take Care.

    Note from Michael: It’s not the end. I will blog again.

  33. breathe
    You know who shows unprovoked rage and vitriol, attacks a person, harasses them and does it all seemingly for no reason?

    Someone suffering from an untreated mental illness. I know that’s kind of cold comfort. Who wouldn’t feel wounded by being kicked when they’re down? Please try not to take their words into your heart. If it wasn’t you anon was attacking, it would be someone or something else. In other words, it’s not about you and I mean that in the nicest possible way. I’m sorry things are going so bad for you guys right now.

    Note from Michael: You mean the world doesn’t revolve around me? 🙂

    Everybody gets that’s a joke, right? Some people take what I write deadly serious.

  34. I’m so very sorry about the unimaginable stress that you and your whole family are under. You will all be in my prayers.
    I hope that you don’t stop writing here. Before your blog and Jani’s story, I had never given a thought to the families of children with mental illness. I had NO IDEA what it was like and your blog brought it to my attention. Not only do *I* have a new understanding about what you and other families in your position are going through but I’ve discussed it with several friends and family members, conversations that wouldn’t have happened without the springboard of your blog.
    With regard to Jani’s school district, where I live you can request permission to attend a school outside of your district. I wonder if you *did* qualify for section 8 in a different district, if the Newhall district would grant an exception for Jani and still let her recieve services.

    Note from Michael: I won’t stop blogging. Just taking a break.

  35. As of Monday (2/21) Susan’s facebook talked about the decision to move back into one apartment all together. She also talked about how happy everyone is about the move…

    Interesting.

    Note from Michael: Our hand was forced because we couldn’t pay for the two apartments. Of course we would like to live together again under one roof. As it happens, our credit application got rejected so it’s not going to happen, at least for the moment. We have to stay with the two apartments for right now.

  36. Dear Michael,

    A simple comment you made in a recent blog post has touched me far deeper than anything has in a long, long time.
    “Why meet their lack of dignity with your own?”
    It is just what I needed to hear to get me through one more day. So, thank you from the bottom of my soul. That simple phrase meant more to me than words can ever express. I know it doesn’t help much, but I wanted you to know. My ex-husband suffers from severe bipolar disorder and he has put himself, our two kids, and me through hell. He self-medicates with illegal drugs and the misuse of his needed meds. It is a roller coaster of a life. We try to find our way to a viable solution in that his parents and I got him a studio apartment near our homes. In this way, he is “in” our world but not “of” it. (I spend the child support money on this arrangement, much to the annoyance and horror of anyone who finds out). We have established kind of a “reverse” custody and visitation arrangement. He comes to the children when he is sober and not in the midst of an episode. They do not ever go to him, he is never alone with them. He cannot take them anywhere, I have our only car. We thought we could monitor things better this way and sometimes this works. BUT, drug addicts and the mentally ill are often better than Houdini ever was. STILL, I refuse to deprive my kids of one sober, available day. They deserve to have that one more memory with the Dad who loves them no matter what is going on in his head. People judge me harshly for this: “Move across the country, strip him of his visitation rights, never speak to him again!” they lament. Then they withdraw their friendship when I do not do as they have decreed. They say I am co-dependent and crazy. All because I let him go to the park with us on a “good” day. It really is a sin in the eyes of many. They don’t understand that we can still love the man and that the man is NOT the illness. He has done many things to ruin our family (run off and cheated and spent all our savings in the midst of an episode, burned down our house during another) and still we cling to the mantra that it is the illness not the man. And people always judge me harshly as if I was the one doing these things, they always judge him as if he is not suffering from a severe mental illness, as if he was a convicted killer. They judge me that I could have ever married him. He is already alienated enough, what kind of person would I be if I twisted the knife? Still, this is what people tell me to do every day. I tell them I could never hurt him or make him suffer more than he already is. That is why your words resonated so much with me. Our babies will judge me one day for how I handled all of this, they will one day have to learn to navigate their own relationships with him and how I handle it now will determine much of the course of that in the future. I believe this path shows them the power of unconditional love and empathy, knowledge I do not know that they would learn so effectively otherwise. If they can take that from our struggles than it was all worth it. Please hold on to that too! So, thank you so much for bolstering me to make it through another day in my fight. It means so much more to me than you will ever know.

    Note from Michael: Thank you so much, Rebecca. It is nice to know I have some positive benefit.

  37. Hope
    Parenting is always subjective and outsiders always feel they could do a better job. Only you understand your children and as such, your decisions MUST be the right ones for them. No one else could possibly do what you are doing for them.

    Take comfort in your small victories like keeping Jani at her school. That is a huge victory.

    I have seen several people who have schizophrenia comment on your blog and many describe having had the illness since they were children. Their stories, as well as current research on the brain indicate that time heals. It may take years, but one day Jani will be better. Not cured, not well, but better. And years from now you will breathe a sigh of relief because you all made it through this dark, terrible time.

    If positive thinking has any affect on the universe (and I believe it does) then I am sending you every positive thought I can, every day.

    Note from Michael: Thank you. She is getting better all the time, which is why I don’t understand those who post comments saying that I should send her to residential. Instead of asking for money, apparently, as if the latter is much worse. I don’t know. I think keeping my family together and doing what is best for my daughter is more important than pride.

  38. Your in my prayers alot, you truly are! I want things to get better for you, & your family sincerely. I feel helpless as we all do at times, and I guess wishing I had a million +more to send to you isn’t going to help at all. Prayers don’t pay the rent, but I don’t know, if I could communicate anything to you anonymously from behind this keyboard for a time before you sign off from this blog, it would be
    1. I don’t know you or your family, but I have so much love & care 4 you all. Truly, I do.
    2. I know in my heart as useless as that is, that Jani will be okay, as long as she has you & her mommy and brother. She will be, even through the darkest days and storms. I don’t have proof that she will, but I believe it.
    3. Your blog has helped me better myself on a more personal level, and I can understand… I can understand more. Understand the struggles parents have, the struggles of being the parent of a child with severe mental illness and such…just understand alot of human things I can’t elaborate on right now….
    4. I want you to know I Thank You. Thank You So much.
    5. I want you to know the people who come here and kick you when you’re down, or feeling that way get a big Fuck Off from me.
    6. I hope someway, somehow, I can see you and Jani, and your family completely on all your feet again, without a care in the world. Maybe thats a foolish wish, but I can see it happening.
    7. Being tired of fighting is okay, but giving up… well you know… No Giving up okay? 😉 Never give up, because victory can be gained!
    8. I’ll be anxiously waiting to read up on your thoughts again via this blog or a future outlet when your ready to write again.

    Note from Michael: Thank you. I needed that!

  39. I’m glad that you were honest and open enough to have viewers follow your family’s journey and grown, and feel lucky to have been one of those viewers. I am currently in school for child psychology and watching your documentary episodes on the Health channel, Oprah, and following your blogs (from this to Michael’s Old Blog) has totally opened my eyes to how a family unit has to cope and live everyday with mental illness in the family. Instead of reading chapters of psychology textbooks, your family taught me how families survive straight from your point of view. Thank you for letting us into your and Jani’s world. I’ll still be referring back to this blog in hopes you blog again 🙂

    All love,
    K J

    Note from Michael: Thank you. That means so much to hear. That is what I want. I don’t know everything either but I know you won’t find reality in a textbook.

  40. I know you’ve publicized on the national front, Michael; but what about the local front? If you’re in such a wealthy neighborhood that there isn’t any section 8 housing, surely a local church or a local newspaper can spread your story and someone can come up with a discounted/empty house? Maybe living together wouldn’t be so overwhelming if there was a little more room to spread out.

    Note from Michael: Not a bad idea, but we haven’t had any media coverage in a while and we don’t (and never have) go after them. They have always come to us. We actually just tried to move back together into one apartment but our credit got rejected.

  41. I am so sad
    Michael,
    I have really come to fall in love with your family and your writing. You have helped me in my healing. I could never have imagined before feeling this way about a blog, but I am sitting here thinking I don’t know what I will do without you. I have read you for so long. I wished so many times I had any money at all so I could move to where you were and get to know you somehow and help you. I guess we just have to remember that life doesn’t always allow any of us to do all the things we want to. I really hope that none of the things I said contributed to your decision; I said the same things I would to anyone I really loved and respected, like you, very much so. I wish you the best. If you come back, I will still be here.

    Note from Michael: I am not going anywhere, Zell. And I have never felt criticized by you. We don’t always agree, but there is a difference.

  42. One more thing
    Michael,
    I also wanted to say to all these who have leapt upon your back once again — unless they have spent time in what is modern inpatient residential care they have no grounds to speak. There are certainly swanky, high end facilities that provide a game face for our ruins of a mental health system. However, most lower income people and all chronic needs individuals like Jani will end up spending a fair chunk of time dealing with far more “run of the mill” operations. I’ve spent just shy of a month’s worth of my life in such a place. I was scarred by the experience for years, still am. I underwent a full body nude search twice. I learned a lot of suicide tips there, and heard a lot of good arguments for it that took me years to unglue from my brain. I was not pushed to function. Often I would lie in bed for days, only getting up to eat. I would stay silent for days and stare out the window. We weren’t allow to go outside or even open the window for fresh air. I begged on my knees to leave the place during group therapy sessions. When I did get out, “friends” I had met inside continued to take advantage of my fragile mental state, stole from me, encouraged me in my drug abuse, and otherwise messed with my head. When this happened, I was 23. Jani is 8. Would any of you want to place your child in a dark situation like this, when they are still young and innocent and bright, still have a chance? I wear a medallion around my neck that I got from a coin machine at a pizza place when I was 8, because it reminds me of a time before I had to face the deep darkness my illness has the potential to visit upon me. I was sick then and no one really knew. My parents were also very ill and abusive, and my situation was STILL far better than it would have been if I had been sent off to residential care that young. I was still free.

    Also, she can speak for herself but from what I understand Jennifer Wahlenburg sent Brenna and Ailish into care at times because they presented an insurmountable threat of violence. The girls were older than Jani and made direct, intentional, and uncontrollable threats to their sister and/or themselves. That is not really the same with Jani at this point. She gets frustrated and lashes out at Bodhi occassionally, but she is redirectable with the right kind of stimulation. There is also a sharp reduction in self-mutilation behaviors since the Clozaril. Jennifer did not put her girls into care for anything reminiscent of an economic reason as anon seems to be implying. I feel fairly convinced that if she were in your situation, her decision about residential would mirror yours…

    Note from Michael: Wow, Zell. Thank you so much for sharing that. You were far more articulate than I have been. Thank you, thank you, thank you.

  43. Well, I’ve never left a comment on here before, I’ve been reading your blog for a while now, since I saw Jani on TLC. I just wanted to let you know, that for all the people who post comments, there are way more who don’t. We are silently cheering you guys on!
    I’ve read that guy’s comments, he’s an asshole! I know I’m not uplifting or anything, but seriously I just wanted to let you know that I read, you are an awesome dad! and that guy is an asshole. 😉

    Note from Michael: It made me laugh. That’s pretty uplifting! 🙂

  44. Nothing i can say will help u but what HE says will save u
    “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.” – Jeremiah 29:11-13

    Romans 10:13-14 for, “Everyone who calls on the name of the Lord will be saved.” that includes u it is not the end just the beginning

    Therefore if any man be in Christ, he is a new creature: old things are passed away; behold, all things are become new.

    Isaiah 54:17
    No weapon that is formed against thee shall prosper; and every tongue that shall rise against thee in judgment thou shalt condemn. This is the heritage of the servants of the LORD, and their righteousness is of me, saith the LORD.
    John 3:16-18 (New International Version, ©2010)

    16 For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. 17 For God did not send his Son into the world to condemn the world, but to save the world through him. 18 Whoever believes in him is not condemned, but whoever does not believe stands condemned already because they have not believed in the name of God’s one and only Son.

    No weapon formed against thee shall prosper
    thats why i am no longer schizophrenic and God has the same plan and more for jani.

    Ephesians 3:20-21
    20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

    if u need anymore verses or if u just need prayer just email me. Take His word to heart. See ya

    Note from Michael: Thank you.

  45. I’m so sorry for your whole situation. Have you considered appealing to Oprah for assistance? I’m sure she gets a ton of requests but since she knows you and Jani’s story, maybe she would consider. Good luck with everything.

    Note from Michael: No, I don’t feel comfortable doing that. We were just one story out of millions.

  46. Please Dont End
    Hi: Long time reader, dont post much. Help when I can. I feel like this blog helps you a lot to get your feelings out. It saddens me that you wont post just because of some really thoughtless people. You dont have to read any of the comments, I mean who really cares what people think. You could take the comments off entirely for a while. It’s your blog, do what you want right? I worry about you and your family. Wish I had the fix….

    Note from Michael: Margo, you are absolutely right! It is stupid of me. I am reacting childishly to a few people who have their own issues. Don’t worry. I will blog again.

  47. Just wanted to second the commenter above that I hope you’ll still chime back in occasionally (however briefly) to let us know if Jani is OK, as well as how Bodhi’s doing. As you know, due to the publicity you guys invited, there are a great many people worldwide who care about Jani and Bodhi and keep your family in their thoughts.

    If you’re worried about being distressed by dissenting opinions, perhaps you could turn the comments off? Whatever any of us think about the choices you’ve made, the fact remains that this is your life, not some debating club, and in the end you’re not answerable for your decisions to anybody except yourself, your family, and God. Best of luck as you fight this hard battle.

    Note from Michael: I am not stopping my blog and I am not going to turn off the comments. The reason is that I need them. I need the feedback from an audience in my darkest moments so I know I am not alone. That means I have to take the good with the bad. I have just been really oversensitive lately and have reacted badly.

  48. As the mother of a child with autism, I understand the pain and frustration you are facing with your son Bohdi. If you are not already aware of this, CA has legislation pending to enact insurance reform for individuals with autism. It will cover both diagnosis and treatment therapies.

    http://www.autismvotes.org/site/c.frKNI3PCImE/b.3937859/k.13F7/California.htm

    Hopefully this will help ease a bit of your burden and give Bohdi some much needed support.

    Note from Michael: Thank you.

  49. Hoping all the best for you
    Micheal and family,

    You are such an inspiration in your committment to your children and your beliefs. I hope you will resume writing your blog as most all of us who read your entries are 100% behind you. While you are away, my prayers and thoughts are with you.

    Note from Michael: Thank you. I will blog again, probably in a few weeks when everything has settled down. Just in a tough place emotionally right now.

  50. Hi, Mr. Schofield. First of all, I want to congratulate you for spending so much time and work into carving the best life possible for your kids. I know, it’s you’re job as a father, but still, you’re doing a pretty stellar job.
    Concerning your financial troubles, I’ve kind of came up with a small suggestion that may or may not help you (it all depends on specifices and whether or not you’ve actually TRIED this before). So, at my high school, we do a bi-monthly ‘Penny War’ for a child in our school who is undergoing chemo. We do this war against the other school in the area. Each school attempts to raise as much pennies as possible (some people can sumbit silver change — but that just subtracts from the other school’s total) Whatever school wins at the end of the month gets a mention in the opposing school’s newspaper and basically just gets humiliated, all in all. It’s a fun, competitive thing we do that benefits a lot for the girl with cancer. Each month, both schools collectivly raise around 5,000 dollars. Every month.
    I was wondering, why don’t you do this with Jani’s school? The principal can announce the event during the normal school hours, perhaps getting other school(s) in the area in on it, too. Or, if Jani’s school is a little too young for it, a nearby middle/high school can also contribute. Kids are competitve and like shuffling through pennies to make a big difference and change. Since Jani’s case is really one-of-a-kind, I doubt that the matter wouldn’t be important enough to pike the communities’ interest. Again, a ‘Penny War’ isn’t your adverage fundraiser. It’s more of a challenge, for the schools and the students in them.
    So how about that? Sorry if I’m being too nosy, I just making suggestions because I LOVE your family and all that you’re doing with your kids, and want to make your lives a little bit easier. (:

    Thanks for taking the time to read this, and please reply back if you can.

    Sincerely,
    Merna

    Note from Michael: Merna, I love the idea! Just in general! Who started it for the girl with chemo? Once we get settled that is a fantastic idea I would like to do for other mentally ill/autistic spectrum kids, even if it’s not Jani. What a great idea!

  51. I have to say that I wholeheartedly agree with Dionne. She nailed all my thoughts exactly. I’m not your critic. I’m rooting for you guys. I’ve cried for your family and I continue to think of you daily and check your blog for updates. But I do think it’s time to get more proactive, for your family.

    Note from Michael: Actually, I agree as well. I have gotten tired of writing blogs continually begging for money. That was never what I intended this blog to be. It’s just what I have had to do recently. I was probably a bit too harsh in my response to Dionne. Sorry, Dionne.

  52. Autistic Family
    Gosh, I shouldn’t say this but, somehow, I feel compelled to. Michael, I KNOW your life is difficult to say the least, but if you want an example of how to survive and survive GRACIOUSLY visit this blog: http://autismbitestheblog.blogspot.com/ Neither Mom nor Dad have written in close to one year, understandably. They also had their story told nationwide.

    I understand the difference between schizophrenia and autism. Both are highly stressful, disruptive and, at times, dangerous to victim, siblings and parents, but you need to think about taking a stroll in their shoes.

    This family has grace, humility, acceptance, poverty, humor and an abundance of love, and still manages to raise 6 autistic kids as a family, under one 1300 sq. ft. roof, and actually APPRECIATE their supporters even if all those supporters do is pray. (“Praying is nice because then you don’t really have to do anything.”) Shame on you, Michael.

    Note from Michael: Liz, so what you like about that family is that they “accept” their situation with grace and humility. Hmmm. Does that make you feel better about not helping them? By the way, that is no criticism against them. They are who they are and I am who I am, although if I was you I would be more worried about why they haven’t written in a YEAR instead of sitting on your high horse. Go find them and help them, Liz.

  53. Sending your family my love
    I wrote once before, suggesting that it could be feasible to move into one apartment. You replied that it wasn’t something you were considering. I’m sorry to hear that you did look into it and that it didn’t work out. That sucks.

    What continues to amaze me about your family, what keeps me reading, is precisely THAT you have kept Jani out of residential. That you and Susan have found a way to live that keeps her in your life, and you in hers, and her in the real world. I was hospitalized for mental health issues once, for a grand total of 9 days. I would never, ever want to live that way.

    Are your decisions difficult? Damn right. Are they worth it? Hells yes. I’m glad that you have Facebook and this blog to let your emotions out, because what you’re going through is deeper than what many people will ever experience.

    You’re doing what you need to do, and you have the strength to keep going, and the inner courage to wake up each morning and face each day. You’re not a superhero. You’re just the best dad Jani and Bodhi could ever wish for.

  54. Prayer should follow action
    I am in no way criticizing people who offer prayer. I also pray for your family. However, if my child was in front of a speeding train I wouldn’t pray, I would shove them out of the way. Prayer is great, but it is even GREATER when combined with action. If you really want to make a difference get involved and get your hands dirty.

    I haven’t smoked for 21 years. Quitting was the hardest thing I ever did. You quitting smoking while under this amount of stress is RIDICULOUS and UNREALISTIC. I have your address and will continue to send support until I see you’ve published your book. I will personally help pay for the cigarettes and happy meals so every critical person can f’ off and drop that tired argument.

    I hope everyone will continue to support your family however they are able to.

    Keri E

    Note from Michael: Wow, Keri. Glad you are on our side 🙂

  55. Hey Michael,

    In our case, it was a junior who talked with the principal about the girl’s situation. The principal then consulted with the other principal from the opposing school and we started doing it! It’s so much fun.

    And I’m so elated that you’ve found the idea interesting! I was just trying to come up with creative ways to make your lives a bit easier — you really don’t need to suffer that much. 🙂

    Sincerely,
    Merna

  56. I am extremely glad that you will not stop writing as I am one of those who always worried when there was an extended silence. Like Zell, I hope you didn’t classify me with those who curse the darkness instead of lighting one candle. I don’t think I am someone who just gracefully accepts what life has thrown my way, but I find it hard to say everything I deal with practically and emotionally here. My son has never talked; he is a teenager who has a three year old’s understanding of why the computer does not work or why he cannot appropriate x or y. Sometimes-with much trial and error- we work through it. Sometimes, he hits, pushes, or kicks – or throws things. This doesn’t happen all the time or even most of the time, but it happens enough that we have been compelled to teach him here. We could send him to the “psychoeducational” school in our state. Google that and you will see why we won’t do that. Imagine a non-verbal child sequestered with only other severly autistic children AND ED children. He would be a perfect victim who could never report.
    I will say that my feelings were hurt when you didn’t even inquire why I dis-enrolled from the group. And, then I felt you dismissed me as a Pollyanna. That is silly, I know.. I understand better than most the life you live and the choices you make and the limited time for people you know only from the internet. I have a hard time getting to and paying for the doctor or dentist myself or doing anything “non-emergent” that means my husband will have to take off work. We need him to work and my son’s appointments and doctors are 100 times more important than mine. I think I triggered a bit because you remind me of my husband. He gets to be upset and I have to be “serene.” It ain’t easy. ( I almost want to say “being green” from excessive exposure to Sesame Street.)

    This was a long letter to say that I will continue to pray and hope for you. I am sorry that I can’t be there physically or financially and I know hopes are flimsy things as you said. But, real concern and a place to talk can give me strength on a dark day- so I hope you do know that it does help to know that we are not alone.

    Note from Michael: I remember when you dis-enrolled from the group. I didn’t ask you why because I used to do that in the early days of the group and generally never got a reply. So I figured if you were leaving it was not over anything that I could do. If that is not the case, then I wish you had emailed me. I don’t remember dismissing you as a Pollyana. I am not saying I didn’t. I am just saying I don’t remember.

    What is sad is that I only remember your email. I have learned so much more about you and your life from this comment than I ever did before. I’m sorry. I truly am. Nonverbal is so difficult because you never get any response at all. You carry a rock far greater than the one I do. Is there something I can do for you?

  57. Okay, picking a name b/c there are way too many “anons” on here. I know you can see my email, I just got lazy with the name/wanted to clarify it for other commenters.

    So for your Jani Foundation, would you be interested in not only calling out instances of abuse/neglect in RTCs, but also listing RTCs that set an example for care? I noticed on your page there are a lot of parents of mentally ill children trying to vet out RTC experiences from the community. Wouldn’t it be great if you could set up a comprehensive website to document various facilities? And I’m not just talking a site where commenters randomly chime in with unconfirmed hearsay (although that would be a good platform for looking further into a facility) but a place in which caregivers can find solid, documented information on problems with child programs AND hear which places are making the grade?

    Also, I really, REALLY appreciate that you no longer seem to be viewing me with malicious intent and are responding kindly. Thank you. I think maybe you could also reconsider your viewpoint towards Ari’s points about Bodhi. You’re right on some counts: Those with disabled siblings should understand the unique challenges and extra demands of their sibling’s disability and learn to handle that with grace. But please be careful with how much you consider Bodhi’s happiness and safety. He will always have issues because of his sister’s needs, and a lot of that is just his cross to bear. But so much of that can be alleviated by the way you treat him. He needs to feel as though he is just as worthy of your time as Jani is, even if you can’t always give him that time. And he needs to know that his safety is as much a priority as Jani’s (and getting separate apartments to keep him safe is a great testament to that). But also, as Jani grows bigger and more difficult to physically remove from a situation in which she attacks Bodhi, it might be prudent to consider what else you must do to keep BOTH children safe.

    Also: Your praying comment? Funny because it’s true 🙂 But you might want to apply that sentiment to everyone who says it, not just people you disagree with (although to be fair, I do recognize that some people use the term “praying for you” interchangeably with “thinking of you”).

    Note from Michael: I don’t think that is a bad idea at all. I think a “clearinghouse” or watchdog organization that compiles most accurate information possible is an excellent idea. That being said, a home environment is always, if possible, better. What bothers me is you seem to assume Jani will get worse as she gets older when all indications are that she is getting better. Maybe I don’t do enough to stress how much better she is with Bodhi. This Bodhi vs. Jani dichotomy is false. It doesn’t exist. It never has. What is happening is people are reading my FEELINGS and taking them literally.

    I actually give Bodhi a lot of love and affection. He is far from neglected. Part of the problem is that people take how I feel internally as the literal truth. That is why this blog has the disclaimer it does. Do I feel guilty? Of course and that is what comes across in the blog. Should I feel guilty? Probably not.

  58. amazon wishlist
    Forgot to add: Also, how about starting an amazon wishlist for the four of you? Sometimes in-kind donations can REALLY take the stress off, and people are often more willing to make them since they know exactly what they would be getting you (obv you still need cash for rent and such). Or an online registry that allows you to add both material things and any intangible item (simpleregistry.com comes to mind) you can think of (maybe you want money to take Jani to a special activity or give Bodhi swim lessons and the like). Hell, you could even put “rent” or “bills” on the registry and let people chip away at it (plus they can see how much more you need for each thing). Might be worth a shot!

  59. she is such a wonderful girl, I watched oprah Born schizophreic and the 20/20 episode how has jani and bodi been doing lately? I wtached a episode called bipolar mysteries on discovery health channel. There is this boy named chase he is as old as jani he was hospatilzad for 5 moths he was diagnosed bipolar with psychosis

  60. Other schools
    I work in special ed and we have programs that accomodate children with all sorts of disablities and diagnosis. Going to school for one or two hours a day is not an unusual arrangment for some of our students. Why do you believe that the Newhall School District is the only one that can help Jani? There are many dedicated educators and programs all over this country….why won’t you consider any of them?

    Note from Michael: Because I hear far more horror stories from other parents fighting their school systems than I hear what you describe. I have no doubt you are dedicated, but dedicated enough to work outside the 8-2 school day?

    Susan and I fought long and hard to get what Jani has at Newhall and I don’t have it in me to fight it again. Also, Jani has been in this school district for her entire academic career. The district knows her and she knows them. This is her home. I am not going to throw that away.

    Ultimately, these alternatives seem to be offered in lieu of begging strangers on the internet for money. But if I have a choice to make between Jani’s stability and begging for money, it really isn’t a hard choice to make. If people don’t want to give, they don’t have to. No one is forcing them to. But this is the way I am going to keep going. I make no apologies.

  61. Idea
    I am praying for all 4 of you.

    While I cannot give details because they are not mine to give, a 12 year old daughter of a friend suffered from mental illness. She was violent, angry, abusive to her siblings. Her parents contacted several local businesses and on of them offered to sponsor a benefit in “E’s” honor. There was a silent auction, music, games, it was like a fair. In the end, they ended up with 18,000 ( a nest egg for the next time E will be in patient) You may have already tried that. But if you haven’t you may consider giving it a try. Her parents said it would never work here but it did. Certainly do not mean to be bossy or say that it is an easy fix. I just so desperately want to make like better for all of you.

    Note from Michael: Thank you. We actually have had individuals put on two drives for us, for which we are very grateful. We didn’t raise anywhere near that kind of money but we also don’t need our hospitalization paid for (yet). Great that the community came through for “E.” So has ours which is another reason why we don’t want to leave. We don’t get free stuff but people know us here.

  62. SAN PEDRO (KTLA) — A mother of two children is speaking out about LAUSD officials placing her 6-year old son in a 72-hour psychiatric hold because he drew what school officials considered to be a “disturbing picture.”

    In an interview with KNBC, Syndi Dorman said she has had a tough time while her husband was stationed in the Army overseas.

    However, she says what the LAUSD did to her son was just as bad.

    Dorman said her 6-year-old son, Jack, was committed to a psychiatric ward against her wishes after he drew a violent drawing at school and wrote that he wanted to die.

    Domran said the picture was something from a video game her son plays.

    She said her son suffers from separation anxiety and has seen a therapist in the past.

    Sign up for KTLA 5 Breaking News Email Alerts

    On the day he drew the disturbing picture, he was upset that he couldn’t stay home with his family.

    School officials at Taper Avenue Elementary in San Pedro were so concerned, they called a Los Angeles County psychiatric mobile response team.

    They determined Jack needed to be committed to a 72-hour psychiatric hold at a local hospital.

    Dorman told school officials that she would immediately take her son to see his own therapist.

    However, school officials reportedly told Dorman that it was their call, that an ambulance was already there to take her son to the hospital.

    Dorman said the ambulance ride was traumatizing for her son.

    Los Angeles Unified School District Superintendent Ramon Cortines released a statement, saying in part, “When any student indicates a desire to take his or her own life, the LAUSD is required to follow strict protocols to ensure the safety of the student … The safety of LAUSD students is paramount. We did the right thing here.”

    Jack was released after 48 hours, but his mother says she worries the experience will have lasting effects

    Note from Michael: Yes, I read about this. I find it amazing because most of us have trouble getting our kids INTO acute psychiatric care, not out of it. Still wonder how this happened.

  63. I wonder why antipsychotics have so severe symptoms. They put me on risperidone for bipolar disorder and I gained 80 pounds in 8 months.

    when they put jani on antipsychotics did it cause her to gain weight? because everybody I know that went on risperidone gained lots of weight

    Note from Michael: No, it did not. Jani hasn’t gained weight from risperidone (which didn’t work for her psychosis anyway or any other drug). She is unusual in that respect.

  64. Wish I could help
    I really do wish I could help you. But I feel for you I work with people with disabilities and though it isn’t as hard to deal with as schizophrenia but it is a 24/7 job. And as of right now most of my time is spent there. And I wish that these peoples parents were as vigiliant as you are about Jani and Bodhi. And I wish that I could give you money but because of circumstances with the people I work with I can not afford it. I am barely scrapping by on my rent right now. But I wish you all the best of luck and hope that you do not lose your apartments jani and bodhi need their safe havens. And I am praying for you and your family.

  65. My name is satonia and I was diagnosed with Schitzophrenia when I was 13, I am now 19. I wanted to tell you I am at aw with you and your family. My own put me up in the DHS system when I was diagnosed. keep fighting. I pray for you every night and little Jani. I wish so much I could help you out financialy but I am sending you all my prayers for you and your family.

  66. regarding the end…
    I truly do hope that you blog again and more than that – I hope that your family can find a way through this.

    I don’t know if this would help or not, but I wonder if it might help to pass this blog along? For example; if I were to put a link in in my facebook status or post it as a discussion topic in a few mommy forums. I know for sure that it will likely draw more nay-sayers…which is why I’m posting here for your permission first. Let me know what you think.

    I hope that Jani is doing better, since your last post.

  67. Please, please, go to a good bank. They often will only ask for your ID & maybe proof of where you live (bring an utility bill or something.) That should be IT. Tell them you are buying for FOUR people && you should be able to get bread, eggs, meat, salad, mac n cheese, rice, etc…. PLEASE do this. It will help. Also applying for food stamps might work, go talk to dept of social services/healt. It doesn’t take long. You would definitely qualify if someone heard your situation. Not utilizing these resources is ridiculous, because you really could save some money… and maybe DSHS can help with getting jani more ssdi money.

  68. A Concerd About Jani
    I was just watching a video where jani is screaming for her mom to help her and her dad smothering her in what looks like a very aggressive and offensive hold while in a bed with her. She is screaming “help me mommy”, “pull me out”. While the father smiles and pulls her in towards him. Her mom is filming it and she (jani) is also smart enough to ask “why are you filming this” to which the mother responds “for the psychiatrist”. Anyways this doesn’t even make sense since she was only “acting out” because she was being held against her will for whatever the reason it looks like for the fathers sick pleasure. Im not speculating at this point weather if the father is doing this on camera what is going on behind the scenes (yes i’m questioning sexual abuse , it has to be asked) not that he would admit it. But if this isn’t in fact the case then at the very least is he needs to lay off her a little as far as that creepy forced “snuggling” its weird and it clearly upset jani. She may have a “mental illness” and may be your daughter doesn’t mean you do whatever you want to her. This video is a haunting spectacle of things perhaps overlooked that are in plain sight. I noticed someone who posted that clip on youtube awhile back and it got many views of concerned people so i just thought i would mention mine and lots of others view on the whole thing. At the very least if no actual abuse is taking place which again only you know. Then possibly some subconscious psychic negativity which is clearly evident and which a little girl like jani would be extremely sensitive to. I am a schizophrenic of 20+ years and so i know a lot of the issue. When Jan is old enough to read id recommend she read the book “the day the voices stopped” by ken steele. i also suggest she keep in contact with her friends like becca who have similar issues. If you really want to help jani like you say. Medicating her with sedatives isn’t the way. And could be effecting future health. And i hope to god (no pun intended) that your not religious freaks who think their daughter is “possessed” or “evil” , this is worst kind of thing for a child is to have parents that label them such things. If you want to help her you need to treat her like anyone else. You cant tell a schizophrenic they’re wrong if trying to help you need to embrace her delusions and hallusinations and play along and help her solve her mental puzzles until she realizes that some of the illusions are just that. I’m still not convinced that she isn’t being abused either and you’ll not only have to convince me but everyone else and the first step if youre really not is to be real with jani. You’re not exploiting her by letting her story be told on tv thats a good thing i think for her and you. So please show us all you really care. Thank you.

    Note from Michael: Ah, do you even know anything about us? From this post it sounds like you haven’t read any of my blogs or really know anything about us.

  69. akathisia?
    I watched that same video clip and don’t believe for one moment that there was anything perverted going on, although it was upsetting to see Jani in such distress. I have wondered if she might have been experiencing akathisia, which is a common side-effect of these drugs. Akathisia is a parkinsonian-type movement disorder causing inner agitation and a terrible feeling of “motor restlessness”. I know just how awful this feeling is, having experienced it myself, but it’s virtually impossible to describe in words. I cannot describe it even as a mentally aware adult, so how much worse it would for a young child who doesn’t have an adult’s verbal capability and doesn’t understand what’s happening to her.

    Of course I don’t know if that was what Jani was experiencing, but if it were, then that would explain her restless struggling and cries to be “pulled out” of it, with Michael’s well-intentioned but inappropriate attempts to hold her still whilst the drugs were causing a terrible need to keep moving.

    Michael, I would be interested to know what drugs and dosages she was on at the time of that particular home movie being made? And was she getting any antidotes for parkinsonism?

    Note from Michael: Jani’s incessant need to move predates the medications. She has always been like that, ever since she was a toddler. Remember she was not on any medication until she was five. Now, akathesia is something that we do watch for as it has happened twice. First was when she was placed on Haldol briefly. The second time was when she was on 300mg of Thorazine. It was quite scary. Both medications were immediately dropped to lower levels (she is no longer on Haldol at all as Haldol does have a very high risk of dystonia) and the thorazine is at much lower levels. I don’t know which video you are referring to you so I can’t tell you what she was on then, if anything.

  70. motor restlessness
    It’s the video Skitzo’s referring to, where you’re on the bed with Jani, trying to hold her down, and Susan’s filming it to show to the psychiatrist. It’s been taken off youtube now, but it may have been the discoveryhealth documentary.

    There’s a big difference between the type of movements Jani was doing on your pre-med vids (which seemed more like autistic stimming) and the type of movements you get with akathisia. The motor restlessness that you get with akathisia is a terrible feeling of physical agitation where you simply cannot relax comfortably.

    I’m glad that she is no longer getting akathisia, because that alone can sometimes drive people to suicide. But if she ever does get it again, please remember that it isn’t something that is always obvious to other people. A person with akathisia may not have any noticeable tremor but just this extreme feeling of inner restlessness that they cannot easily describe.

    Note from Michael: The video you are referring to was taken before she was on any medications at all. The context of that video is it was taken to show the psychiatrist what we were dealing with. I was holding her down because she kept trying to attack Bodhi. The attack on Bodhi was not filmed for obvious reasons: Susan was holding Bodhi and I was trying to hold Jani back. It wasn’t until I got Jani into the room that Susan could start filming.

  71. which vid
    Are you sure we’re talking about the same video?

    Note from Michael: That is the only video that exists like that. That was January, 2008. Sorry to disappoint you but she was not on any medication at that time. It would be another month before she was on her first medication (Risperdal at that time).

  72. During an economic time when most people are struggling to keep themselves in homes and fed, you sure have a lot of nerve to tell your readers to “go fuck yourselves”. The world doesn’t owe you anything. You owe your son an environment where he is safe and that is not with your daughter. Maybe instead of demanding money from strangers and being a jerk about it, it’s time to come to Jesus and realize that Jani isn’t safe outside of an institution and Bodhi isn’t safe living with Jani. You have two kids and a terrible sense of entitlement. You’re not doing the right thing here.

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