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Oppositional Defiant Disorder

Well, the good news is that through your incredible generosity, we were able to pay both the rent on Jani’s apartment and the legal fees which we were charged because the apartment complex filed a legal request to have us evicted. I still can’t believe how fast you all came through for us. Within 24 hours of the last blog being published we had enough. I got the cashier’s check and paid rent this morning. We will not be evicted. For November at least, we will be able to stay in the two apartments.

 

Tonight I write this from Jani’s apartment, the threat of eviction gone, safe again until at least December 1st.

 

But I am alone.

 

Jani isn’t here.

 

She is back at UCLA.

 

Maybe it’s a pyrrhic victory, a battle that is won but at such terrible cost to the victor that the win is essentially a loss, because in the process of fighting to defend what you have, you lose it anyway. The phrase comes from King Pyrrhus of Epidus, who defeated the Romans in 279 B.C., but at the cost of almost his entire army.

 

I don’t feel any satisfaction. I feel like I failed.

 

Was it the threat of eviction that pushed Jani over the edge? I don’t know. Susan and I talked about it only once in front of her, and even then only for a moment. It was Friday. We had just finished dinner at Bodhi’s and I had gone over to Jani’s apartment to take out our dog. On the door I found the eviction notice. The first thing I did was call Susan back over at Bodhi’s apartment. Then I called a friend who is attorney. I had no idea what to do. This had never happened before. When I came back with Honey, I showed her the notice. She asked me what our lawyer friend had said. Jani wanted to go back to her apartment so we really couldn’t discuss it, which was good because it would not have been good to discuss it in front of her. That was it.

 

Jani is smart. Jani is perceptive. Did this push her over the edge? Did the fact that I had an extra cigarette and popped a Klonapin to calm my nerves so I get her into her pajamas and read to her give it away?

 

She never said anything or asked about it. That night, after she was asleep, I wrote the blog. When I woke up the next morning, there was almost enough in the Paypal account to cover the rent. We would be okay.

 

Saturday we went out to a horse ranch where Jani rode and I pulled weeds (I trade labor for the horse therapy because we can’t pay). Jani did well. When she is around animals, I know she is okay. I happily dug up dock sorrel, whose roots run deep into the hard clay soil, and which is also poisonous to horses if consumed in large quantities.

 

Saturday was a good day.

 

Jani had no school on Thursday or Friday. Thursday was Veteran’s Day and Friday was a district furlough day. Weekends are hard enough. Jani needs a fixed schedule. She needs to know what she will be doing every day, and it needs to be the same thing (totally unlike when she was a toddler and it always needed to be “new”).  The first thing she asks me everyday she wakes up is “What are we going to do today?” and then I see her watching me, waiting, while I desperately try to think of something.

 

Jani reacts badly to any change in her routine. She has two teachers. One who teaches Mondays and Thursdays and the other who teaches Tuesdays, Wednesdays, and Fridays. But this IEP season and both are special ed teachers. Since Jani goes to school in the afternoon, after all the other kids are gone, this means that her schooling often falls during district meetings or IEPs. In an attempt to maintain the continuity of her experience, her teachers will trade days when one has an IEP and can’t make it that day. Jani doesn’t melt down at this, not like I have seen autistic kids do. At first, she is fine. She goes along with the changes, even happily telling me who will be her teacher that day. But she is rubbing her hands furiously. It is like the fuse has been lit on the end of a stick of dynamite.

 

When I pick her up, she will say “I had fun,” at school, without prompting, which usually means she is trying to convince herself of that. The hand rubbing again.”What are we going to have for dinner?” Ah…. I haven’t thought that far ahead. Jani waits, then answers the question for herself. “I want rice and corn tonight.” Okay.

 

We will get home and start making dinner. Jani will help me prepare the food. But waiting while it cooks is hard for her. She paces. She picks up a large spoon and stirs the rice, watching it for any signs that it is ready. I watch her carefully because she will eat it raw. She gets out the butter for the bread we are heating up. She cuts off butter in preparation with a plastic knife. She waits expectantly, watching the microwave tick down. I look away. When I look back, she is eating the butter. Just butter. I tell her not to. I send her out of the kitchen. She wanders. Bodhi runs in from his bath, naked as a jaybird. He runs up to Jani, grabbing her, laughing, wanting to wrestle. She pushes him away. That is new, I think. She hasn’t done that for awhile. Bodhi tries again. He wants to play. Jani pushes him again, “No, Bodhi!”

 

“Susan?” I call, getting nervous. “Can you come get Bodhi?”

 

“Hold on a minute. I am in the bathroom,” Susan calls back, annoyed.

 

“But I’m making dinner.”

 

“I’m in the bathroom!” Susan calls again, as if I was too dense to hear it the first time.

 

I take Bodhi and diaper him and dress him in his Pjs. Jani walks past us into the kitchen again. She picks up the spoon and stirs the rice. “Is the rice ready?”

 

It hasn’t even started to boil.

 

“Not yet.”

 

“How long?”

 

“I don’t know.”

 

“How many minutes? Five? Ten?”

 

She wants an exact number. “Ten.”

 

Out of the corner of my eye, I see her stir again. “Jani, leave it alone. Let it cook.” She is eating the uncooked rice, lifting the spoon with near boiling water to her mouth.

 

“Jani, don’t do that!”

 

Were you afraid she burned herself? No, not yet. Sometimes though, I wonder how I would stop her if Jani suddenly got a thought into her head to pour the boiling water all over herself. In those moments, her brain is the most dangerous thing to her. Her brain can send a message and she will act.

 

She needs something to do. There is no down time. “Here, help me make the salad.”

 

Keep her busy, keep her busy, keep her busy.

 

Saturday. I hate the weekends because there is no school, even though Jani’s school is only two hours a day. At least she has that to look forward. On Saturday, we go out to the ranch, but that isn’t until the afternoon. We have to find some way to get through the morning.

 

We go to breakfast. Jani wants McDonald’s. I drop Susan off at Western Bagel to get our breakfast and then drive across the parking lot to the McDonald’s. Susan will walk over. I take Jani and Bodhi in. Jani wants French Fries but they are still serving breakfast. She agrees to hash browns and a yogurt parfait. She insists on carrying the tray to the table. She drops the orange juice. She starts to lose it but I assure her we can get more. I ask for another and am given one. Susan arrives with the bagels and we eat breakfast. Jani takes a few bites of her hash brown and a few bites of the yogurt, then says she is full. Then she says she is still hungry. McDonald’s has rolled over to lunch. I get a large French fries. She eats a few. Bodhi reaches for them but she pushes him away. We tell her to share. She insists he will eat them all. There are plenty we say. But suddenly she doesn’t want to eat anymore, as if us making her share with Bodhi killed her appetite. She says she is full. She gets up, ready to go. Where can we go, she asks? I don’t know. Can we go to Central Park, she asks? Sure. Let us just finish eating. She hovers around the table, unable to stop moving. This is with fifty milligrams of thorazine in her, plus 300 mg of Lithium and 100 mg of Clozapine. I ask her if she wants anymore fries. She doesn’t. I pack up the remainder. She takes them, intending to carry them, but drops them, spilling about half on the floor. I tell  her no big deal, we can get more, even though she wasn’t even eating them anymore. She picks up the box and throws it across the restaurant, fries flying out and hitting a young woman eating, who looks at me and glares. I ignore this. Jani starts crying, saying she needs more fries. She says she will never get anymore. I hold her arms because she is trying to throw anything she can get her hands on. Susan is going to get more fries. Jani drops to the floor and starts eating fries off the floor. I take her arms and try to get her back on her feet. She cranes over, her arms held by me, trying to get the fries on the floor with her mouth. It looks like she is bobbing for fries. I tell her more are coming. She is inconsolable, insisting that there are no more. It is like she can’t here me. Susan arrives with fresh fries. Jani doesn’t eat them. She doesn’t want them. She wants what is on the floor. Something is driving her to eat off the floor.

 

I get her outside.

 

Sunday. The day Susan and I do our Bipolar Nation radio show. We travel first to a friend to drop Bodhi off. Jani wants to see their cat, Vinny. Vinny is dead, but we have been telling her he is at the vet. He is fifteen after all. In reality, he was hit by a car. We don’t want to tell Jani the truth, not when she is already struggling.

 

In order to do Bipolar Nation, a fifty minute show, the only time Susan and I get alone a week, we must drop Bodhi off with a friend and then drop Jani off with a UCLA intern who helps us out. We do not allow anyone to take both kids together. It is too risky. Each child must go to a different location so the person watching each one has only that child to worry about.

 

Usually, Jani’s intern takes her to ride the ponies in Griffith Park. Jani didn’t want to go this time. She wanted to stay with us. She wanted to come into the studio. This wasn’t feasible. Jani can’t sit still for a few minutes, let alone fifty. On top of which we had topics we did not want to discuss in front of her because it would be inappropriate. Jason Garrett, one of our resident comedians, was coming on that morning. I asked Susan to call him and ask if he could bring his dog, a service animal he uses as part of treatment for his own bipolar disorder. He said he could. I thought fantastic. Jani and her intern will stay in the waiting room, playing with the dog.

 

 

We arrive outside the studio. Jani jumps out of the car, wanting to see the dog. The dog isn’t here yet, I tell her. The dog might not be here for thirty more minutes. Are you sure you don’t want to go ride the ponies? No. In reality, I want her to go, knowing that once she is focused on something else, she will forget about the dog and staying in the studio.

 

Jani keeps looking for the dog, even though I tell her Jason isn’t here yet. She is moving up and down the sidewalk along Ventura Boulevard. Then she steps out into the street, between our car and her intern’s parked car. MTA buses blast by. Nervous, I try to guide her back onto the sidewalk. She resists. She is trying to get out into the street, where cars race by at 50 mph. I put my body between her and the street. She pushes back against me. She tries to get around me. I have to grab her arms. She is pulling. I don’t know if she is trying to get out into the street, or if she is even aware that the street is there, but that is direction she is trying to go. I am trying to hold her back. If I let go, she will run forward and be run over by heavy traffic. I try to get her to go upstairs. She won’t until the dog arrives. I hold onto her. We feel the slipstream of cars rushing past. Jani seems oblivious. She is just trying to get free, but she is pulling for the street.

 

Jason arrives with his dog, Lola. Jani turns away from Ventura Boulevard, away from me, and runs up to Lola. I relax, thinking everything will be alright now.

 

But I didn’t know that Jason never lets his dog out of his sight. I didn’t know he wouldn’t leave her in the waiting room with Jani, that he would insist on bringing her into the studio. This mean Jani insisted on being in the studio too. She still doesn’t want to go to the ponies. She wants to go on the air.

 

This is the link to the show itself. Jani keeps repeating that she has schizophrenia and the word “dog.” We have a guest on, talking about how ValueOptions, who administers mental health benefits for Medicaid patients in Colorado (and most states), refused to give his nine year old son a psych evaluation, deeming it “medically unnecessary.” Later that same day, at his school, the boy is found sharpening a stick, intending to kill himself with it. The police are called, the same police department that responded to Columbine eleven years ago. Men with guns. The boy bites one of them as they try to talk him out of trying to kill himself.

 

This is a nine year old boy.

 

ValueOptions’ bread and butter is state contracts to administer mental health benefits. The “value” they promise is gained by denying every claim they possibly can, which is essentially all of them. They save states like Colorado a lot of money by denying payment for mental health treatment, although in the end the state ends up paying more because these kids wind up in residential treatment facilities (which ValueOptions does not pay for) or jail. States like Colorado choose them because of their low cost, not realizing that they are going to end up footing the bill because ValueOptions denies authorization for inpatient acute care. It is sort of like having a pimple on your face but instead of treating the pimple, cutting off your face.

 

Throughout the show, Jason is silent. This is because is working to keep Jani engaged, as is her intern, Julian. Eventually, even Susan is called upon to try and help, leaving me to carry the show. I am talking to our guest while three adults try to get Jani out of the studio. You can’t hear most of this because I kill everybody’s mic except mine. We go to commercial break, and I run every commercial and bumper we have, even inadvertently repeating the same commercial twice, for my father-in-law’s time management book. We have to get Jani out for a few minutes because our next topic is Jenna Jamison turning from porn to being a mom, which we cannot talk about with Jani in studio. Susan hurries back as the promos end and says, “We’re a bit bipolar today,” out of breath. Five minutes later, we end the show. We come out to find Jani on the floor. The items that should be on the table in the waiting room are piled up on a desk inside the studio area. Jani had been throwing them. I find out she threw a glass vase at Julian.

 

The fuse reached the stick of dynamite. Jani was out of control.

 

It was Susan who made the decision to take her back to UCLA. I was hesitant. Actually I was indecisive. If I had been with her, none of this would have happened. I should have been there. I should have blown off the show. I didn’t because I am trying to help others with mentally ill children. But it is coming at the cost of my own.

 

Susan insisted she go back to UCLA. I still was indecisive. Susan reminded me she had tried to run into Ventura Boulevard.

 

I never know how far is too far. I never know when to take Jani back to UCLA or when to ride it out. My instinct is to ride it out, but what if I ride it out until it’s too late. What if I dismiss the violence, her biting herself and sticking foreign objects in her ears because they are itchy, or running into traffic? What if I go back to engaging her and everything is fine? And then she pours boiling water over herself one night while we are making dinner?

 

How long should I wait?

 

Thankfully, Susan made the decision for me. She took her. I picked up Bodhi, packed Jani a bag of clothes, some of her favorite books, and her favorite teddy bear. Then I drove to the UCLA ER and traded Bodhi for Jani. Susan left and I stayed with Jani, not sure they would admit her. She was largely fine while we waited. No violence, no trying to run. We were in the psych hold rooms in the ER, where I have been so many times before the security guards all know us. Another patient serenaded us to the greatest hits of Bob Marley. It was actually one of my more pleasant experiences in the ER.

 

The on call psychiatric fellow came, a nice young lady. She asked me what was going on. I told her, but I had trouble. I was caught between my indecision of whether she needed to be hospitalized. I know it is better to hospitalize than wait for something bad to happen, but what can UCLA do? There are no more meds left to try and I don’t want to put Jani through another med trial anyway. I just wanted her safe. I just wanted her to get what I felt she needed, which was a place to decompress from the stress of our world, your world, the world the rest of us live and deal with but a world that slowly eats away at Jani’s resistance against the citizens of Calalini. She needed a break.

 

To my surprise she was admitted. On the grounds that “parents felt child would not be safe at home.” Maybe. I don’t know. I have no trouble outing people who deny care or give poor care to mentally ill children on the radio, but I am indecisive when it comes to my own daughter. Am I doing the right thing? Always on these nights I intently wish I could just take her home to her own bed, even as I check her into the hospital.

 

She started crying inconsolably. Because they were taking too long to come get her and take her upstairs. They would never come, she felt.

 

When we got upstairs, she cried because she didn’t want me to leave.

 

What does she want? I don’t know that she knows. Her emotions are ping-ponging back and forth. Maybe that’s a good thing. At least she has emotions. There was a time when she never cried when we left the hospital. Now she does. Now she is in touch with her emotions enough to miss us.

 

Is she psychotic? She was. Is she now? I don’t know. I think she was anxious. The fuse ran out .

 

I was deep in doubt, that is until I read two comments from my last blog. I don’t think either one was familiar with our story. One suggested that I needed to get a higher paying job, or that Susan needed to work full-time, apparently assuming our inability to pay the rent on Jani’s apartment was due to an inability to make money, but clearly forgetting why we have two apartments in the first place. We can’t make money, but not because I can’t get a higher paying job. My inability to make more money has a name, and her name is Jani. She needs me. If I could be there all the time, if I had her energy, if had endless ideas for stimulating her, she would be fine.

 

The second commenter suggested it was “time to make the hard decisions,” whatever that means. Actually, I know what it means. Sacrifice Jani to a residential so I can work more and stop begging people I don’t know for money.

 

No.

 

I am a Capricorn, the stubborn goat. I will, and do, say in my blogs over and over again how I am not sure that we can do this. I doubt myself all the time. But if you say it, I say, “screw you.”  If you doubt me, then I become convinced I am doing the right thing.

 

So please, write to me and tell me I should not have let Jani go to the hospital. Tell me I am wrong, that everything I am doing is wrong, that I can’t possibly keep this up, that eventually I will have to make a choice between Jani and my own sanity.

 

Do me that favor. Tell me I can’t do it.

 

Please.

 

Because I need to feel like I can.

 

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70 comments on “Oppositional Defiant Disorder

  1. No
    I cannot say the terrible things that you are asking to hear. There are plenty of people out there who can and will. Let me spin it around for you – your army consists of your family and all of the people out there who believe in Jani. Sure, there are lots of injuries being sustained. That’s what happens in battle.

    There is no more powerful influence operating either for or against you than that of your own thoughts. Be brave. You have your thoughts of failure. Prove yourself wrong.

    Claim your rightful place in this world of childhood mental illness.
    THE ARCHETYPAL HERO The archetypal hero appears in all religions, mythologies, and epics of the world. He is an expression of our personal and collective unconscious. You have the opportunity to be this person. In so many, many eyes (including Susan’s and Jani’s and Bohdi’s), you are this hero, the one to carry through to the end.

    Personally, I challenge you to do what you know you are meant to do.

  2. Michael,
    No one can tell us if we are right or wrong. It is what it is. We make decisions. We have to. And often it is basic survival. Some readers here say very simplistic things. I also have financial difficulties and have stopped working without unemployment benefits to take care of my children.
    As you often tell us most people could not care for our children for one day let alone the exhausting efforts of every day. In or out of a hospital it is still exhausting and painful.
    I love your willingness to share and your willingness to be vulnerable and have the courage to say you don’t know.
    A week ago Sunday we spent 12 hours at a psych emergency room and never saw a doctor!! I’ve been trying to get my son placed for the last 2 months without success.
    Again, contributors here sometimes say knee jerk responses. They do not know the daily stress combined with the overwhelming need and desire to keep a child within the family unit. I do know. My heart goes out to you and Susan and Jani and Bohdi. May God give you the comfort you all desperately need.

    Note from Michael: Karen, email me at michaeljohnschofield@me.com and tell me about what is going on with your son. I know you have probably posted about it in the group but I haven’t been able to keep up with a lot of the posts there.

  3. I’m also a Capricorn, so I sympathize with the oppositional tendencies! On the other hand, other people’s valid points have frequently drifted back to me in moments of solitude, even when I haven’t been willing to acknowledge them in the hurly-burly of conversation. So here’s one perspective to consider next time you feel safe enough to let your intellectual guard down a bit.

    You’ve said many times that schizophrenia is a biological illness. It is not behavioral or psychological. (In fact, a really interesting article here: http://discovermagazine.com/2010/jun/03-the-insanity-virus/ suggests that schizophrenia may be prompted by an autoimmune response to the infection-prompted emergence of a retrovirus that’s dormant in our genome). As you’ve pointed out, all those doctors haven’t been able to train or negotiate or punish or scold Jani out of schizophrenia, because the problem is with the firing of her neurons. The misregulation of her neurotransmitters, and the damage to brain tissue, that produce the aberrant thinking, are biochemically driven and continue regardless of what’s going on psychologically with her.

    And yet, the criteria that you personally use to judge Jani’s progress or lack of progress are entirely behavioral. It’s understandable, and I’m sure the therapists/support personnel do the same, because behavior is the only thing you have to observe. But after all, since schizophrenia is a biological injury, the behavior is not the schizophrenia. It’s only a sign of the underlying damage. And if the behavior waxes and wanes, it doesn’t mean that the underlying disease has reversed. There’s no evidence to suggest that the progressive chemical changes that come with schizophrenia are reversible. If Jani is lucid, it’s because her thinking is taking place in the parts of her brain that are still relatively undamaged; if she’s hallucinating, it’s because the damaged bits happen to be the ones firing at the moment. But either way, the schizophrenia is still there. It hasn’t retreated. It hasn’t been helped.

    All that means that you don’t really have ground to think that the constant stimulation you and Susan provide is helping long-term, do you? It keeps Jani behaving somewhat normally. But when you stop, she goes back to the same symptoms. It’s as though a child had a spinal tumor that was causing his arms to flail, and his parents insisted on constantly walking on either side of him, keeping his arms still, holding them down. The intervention might produce the temporary appearance of health, but it would have no effect on the actual disease. And if the parents’ insistence on staying by his side kept the boy out of chemo, it might ultimately be really dangerous to his long-term health.

    I haven’t seen any research that says parental interaction or stimulation per se has any effects on brain physiology in children. But what does have real, measurable chemical effects is stress. Stress hormones are actively harmful to vulnerable tissues. They promote the inflammatory processes that may already be damaging Jani’s brain. And frankly, compared to the safety and routine of hospitalization, Jani’s life now sounds, well, hugely stressful. Sure, she gets a constant routine of stimulation that keeps her symptoms from emerging. But that has nothing to do with her disease. What’s relevant for her disease is that the situation is unstable, that Bodhi is around (and it sounds as though she finds him threatening), that you and her mom are also stressed and anxious (and you’ve said she’s sensitive, able to pick up on emotional cues), that there’s chaos that you can’t control, and couldn’t possibly control, simply because the real world,as you’ve pointed out, is not designed for kids with mental illness. So: productive of a lot of stress.

    I can’t imagine how heartbreaking it would be to contemplate not living with one of my children. But I’d like to think that in a similar situation, I’d try to distinguish between factors that made me feel better (naturally, interacting with the kid, keeping her behaving as “normally” as possible, so I can enjoy that parental connection) and what might actually be best for the health of the child. You’ve said that Jani seems better when she’s hospitalized, and that she doesn’t appear to miss the 24/7 contact with you and Susan. A facility might not be able to give her constant stimulation and activity, but you have no reason to think that that matters in real terms, anyway. A facility *would* provide routine, stability, constant observation, and safety, above all, a stable, highly structured, low-stress environment.

    I know you and Susan were worried about the facility’s being out of state. Is there any reason you couldn’t move the family to be near her, wherever she is? California is expensive, after all.

    Just one perspective. My thoughts are with you as you struggle through this.

  4. Can’t
    Michael:

    I can’t tell you what to do, any more than you can tell me what to do for Tim. We chose residential. But Tim is twice as old as Jani is. For us, it came down to the definition of insanity. You know what I mean.

    Tim is doing well, thankfully. We had him on a three-day pass (so to speak) last weekend, and even though it is a notoriously unstable time of year for Tim, he did ok. Just one minor meltdown in a clothing store where I was trying to get him to try on shirts in size medium (he’s lost 50 lbs off the depakote), and he insisted he was still an XXL. The anxiety and the pacing and the talking to his “friends” kicked in. We freaked out the woman working in the store. He isolated in a dressing room, rationalized with me that it doesn’t matter the size, just that the shirt fits, and was fine. But shopping was over for the day.

    Why that story? I don’t know. I guess to show that it’s never going to end, there are just different degrees of what a normal day looks like. I do feel that would have been a much bigger deal if not for the intensive program he’s in at ODTC. But he expressed a desire to go there as well, to learn to be independent from us. So for us, the decision was collaborative.

    I can’t tell you what to do. Only you, Susan and Jani can choose.

  5. Michael
    I can’t tell you that Jani doesn’t belong with her family even if you want us to. For me, and most of us out here, residential is losing Jani to the system. She belongs at home. Remember what is most important – look how long she was at home this time? Wasn’t it about as long as she has been out of the hospital since her diagnosis? We all knew in reality that it wouldn’t last forvever. This is just a little time off for everyone. She will be back at home where she belongs.

    Right now, we are starting on December’s rent. I trust you and Susan. We all trust your judgement. Nobody knows what is best for Jani except the both of your.

    Have faith and trust in yourselt. Sorry if that’s not what you wanted to hear, but it’s what I feel in my heart for Jani.
    Keeping the faith
    Joe

    Note from Michael: Actually, Joe, that was exactly what I wanted to hear.

  6. You can do it! I think it’s better to admitt her to UCLA even if you are unsure she needs it, just to be on the safe side. I admire what you are doing for Jani. More parents need to be like you and Susan. You guys are in my thoughts and prayers.

  7. Hurm…
    Sometimes the hardest decision to make is to carry on. It can’t be easy. If it were easy everyone would be doing it. No one would need residential or day centers. If it were as easy as a higher paying job no one would be broke. If a Pill fixed it all then the whole world would be wonderful and full of rainbows and fairy dust because God knows there are enough pills. But it isn’t easy and that fact scares people. Because if there aren’t answers for you then maybe there aren’t answers for them either.

    So you see it has to be easy for you,Susan,Jani and Bodhi because if it’s not then we all have to admit it’s not easy.We have to accept that the “easy” fix is bullshit designed to be a security blanket for the masses who can’t cope. Then the fear and doubt creep in and the monster takes over. As humans we are all scared of something just sitting around on borrowed time looking for a fix to make it from one day to the next. All we have to decide is what to do with the time given to us. At least you know what you are fighting for and you strive to make Jani’s life full and happy. You are wonderful parents who are a hell of a lot braver than most of us.

    I’m sorry to hear Jani is in ucla. I hope she is home soon.

  8. Jani
    Jani’s story continues to tear my heart out.

    But I think it’s true that all this worrying about money and evictions and that sort of thing, somehow passes on to Jani. I think it affects her outlook. And I think it depresses her.

    I remember how bad I felt as a boy back in the 1950s when my parents would argue late at night about money matters, or religion, or whatever.
    It seemed a continual part of their lives until they retired in the 1980s. Maybe Jani feels the way I did, as a child, I knew something was wrong but I had no idea how I could change things. I blamed myself sometimes.

    So I think I have a (partial) idea of what Jani is going through.

    As to going back to UCLA,it was for the best. Maybe you and Jani just need a short time-out.

    We will all continue to contribute materially to Jani’s support, but maybe you folks should consider moving back into one apartment. The stress of having to meet the rent on Jani’s apartment might be getting to be a little too much. Not to mention the downright nasty attitude of that manager. Like something out of Dickens.

    But no matter what what decision you make, you’ll always have our support.

    Note from Michael: Thank you, Carl, as always. So much to think about…

  9. Good morning!

    OK, Michael, you can’t do it. (Just trying to accommodate you – I’m such a pleaser) HA!

    Re Jani being in UCLA – Interesting look at this:
    Your words: I just wanted her to get what I felt she needed, which was a place to decompress from the stress of our world, your world, the world the rest of us live and deal with but a world that slowly eats away at Jani’s resistance against the citizens of Calalini. She needed a break.

    Definition of “Home”: A home is a place of residence or refuge. When it refers to a building, it is usually a place in which an individual or a family can rest and store personal property. Most modern-day households contain sanitary facilities and a means of preparing food. “Home” is also used to refer to the geographical area (whether it be a suburb, town, city or country) in which a person grew up or feels they belong. As an alternative to the definition of “home” as a physical locale, home may be perceived to have no physical definition–instead, home may relate instead to a mental or emotional state of refuge or comfort.

    Remember, her stay is only temporary, and she is getting what she needs there. She is safe, and seems to thrive in that environment. Sometimes she even knows when it’s time to go, doesn’t she…. (Socked Susan when they were not going to admit her…. Smart little cookie). Remember how you’ve learned to accept her ‘friends’ as the relatives you tolerate?? Perhaps UCLA could be her trip to the spa?? Just a thought.

    I have heard of programs in which a parent can be paid as a full time caretaker of their disabled dependant. My cousin has a child that is disabled and was told he needed to be institutionalized. She decided to keep him home and as his primary care giver is paid a wage for doing so. In addition, I recently met a woman who receives a ‘paycheck’ as she is the primary care giver for her husband. Go to your city or county’s website and look around or contact the IHSS (In Home Support Services). She also told me that insurance companies have social workers on staff. These social workers are aware of services/programs that their insured are entitled to based on their need/situation. These programs are not listed in your coverage booklet, and the customer service departments and insurance agents are not aware of them. Through her insurance company’s social worker, they found out that her husband qualified for a free gym membership due to his physical needs….. Hope that helps!

    So, take a deep cleansing breath and let it out, Dad.
    Don’t stop but quit being abrasive…. (Sorry, but I’m afraid you’re going to start turning people off – it’s already started to happen, and Jani will suffer for it) People don’t respond to ‘your challenges’ because they really AREN’T truly challenges. You push peoples’ buttons in an effort to get them to step up – it doesn’t always work…

    Note from Michael: Being “nice” hasn’t worked for forty years. Mental health has gone backwards, not forwards in terms of services. Maybe being “abrasive” will finally get some attention. I do acknowledge that you are right, however, and my methods are going to turn some people off. But that is a risk I am willing to take to get these kids the life they deserve.

  10. I have only stumbled on your blog, but its stings at how much it reminds me of my childhood. My brother had been diagnosed at the age of four with severe manic depressive disorder which is now known as being bipolar. Very rare in someone so young. I feel your struggle, although I can never really begin to know what its like.

    The toll his care took on my parents (who divorced) and the toll it took on me and my other sibling is immense. It was not just Jonathan’s disease, but all of ours. The times he was actually accepted into residential treatment was beneficial for all of us, not just him. We were able to regroup. The enormous amount of resentment I felt toward him for taking all my parents time and commitment retreated. A feeling no doubt your younger son Bodhi will feel one day.

    One time, when Jonathan was 16 years old, we could not convince ourselves or his team of doctors he was a threat to himself and he eventually was driven to try to commit suicide. I thank the Lord everyday he was unsuccessful. Don’t fight the gut feelings. You did the right thing.

    Today, Jonathan is 20 years old and has successfully held down a part-time job. There is hope for your daughter to be a part of this world.

    Note from Michael: “The enormous amount of resentment I felt toward him for taking all my parents time and commitment retreated. A feeling no doubt your younger son Bodhi will feel one day.” I hope not. I hope he knows we would (and are) doing the same thing for him. He has his own issues (autism).

  11. Michael,

    As many of the comments have said, I can’t tell you you can’t do it, because I know that you can, and I know that you approach all your decisions regarding Jani with gravity and forethought.

    You speak a lot about how animal therapy helps Janie – have you looked into getting her a service animal of her own? Emotional animals or mental disorder animals are becoming more and more common and are protected by the ADA – and some animals really do have uncanny powers to note slipping blood sugar, and oncoming seizure, or maybe even in the case of Jani, a slip into psychosis. Maybe this is impossible, but just a thought to look into.

    Note from Michael: Good idea. I will.

  12. Who the Hell is this jerk calling himself Laing???
    Doesn’t this guy have anything better to do than harrass you when you are obviously strecthed to your limits emotionally and financially? I bet he kicked other kids after they fell on the playground too. What a giant piece of human excrement! Fuck off, Laing!!

    Wish I could contribute financially right now, but will have to wait a couple of weeks till I get paid again. Hang in there. 🙂

    Note from Michael: Thanks, Anne. “Laing” is one of the names that he uses, referring to R.D. Laing, who, although a psychiatrist himself, was vehemently against psychiatry. He had some legitimate points as this was still a time of forced psychiatric care, ECT, etc, but a lot of what he said had no credibility because he would take his patients out into the woods and give them LSD to open up their minds. Anyway, don’t get too upset with “Laing.” Sounds like he has some issues of his own. He really doesn’t bother me and you shouldn’t worry about what he says.

  13. I was anxious to see how you’d respond to my note and am relieved that you did not react negatively to my observations regarding your method (s). (Abrasiveness) Thank you for not letting me ‘have it’!

    I am a little disappointed though that you did not comment about what I wrote about UCLA , nor did you acknowledge that there may be a program in which you (or Susan) could receive pay to be Jani’s professional care giver. I was excited to share that with you and was hoping it might be helpful..

    I do need to clarify however, that I did not say you should be ‘nice’. You are correct. “Nice” gets you nowhere but The ‘Michael’ that calls poor receptionists (that probably make minimum wage) stupid, and lambasts therapists who previously have rearranged their personal schedules to accommodate his daughter only to be called cowards, quitters, takes pot shots at PHD’s and the types of cars they drive, etc is not going to be someone that people will respond to and support. Most importantly, if I’m correct, the biggest loser in that whole fiasco was the person you were trying to advocate for, JANI. She lost her therapists and suffered a major disruption to her schedule/routine. Don’t you see how your actions (and Susan’s) have already begun to negatively impact Jani.

    It might not feel like it right now, but I really am pulling for you! I’m not saying to be nice. I’m not saying to give up. I’m not saying to take no for an answer. I’m saying that you can control your emotions/actions I’ve seen you. And THAT’S the Michael that will make a difference and be the advocate for Jani and all of the others that are in such need. The ‘Michael’ that is articulate, well spoken, a professional and master of the English language…. And does not take no for an answer. I’ve seen him. Where did HE go? Bring HIM back.

    D

    Note from Michael: I disagree with you about “therapists rearranging their personal schedules.” I have yet to meet a therapist who does that. I have blogged before about how therapy for psychosis needs to change. And you are also wrong about the loss of her therapy hurting Jani. They weren’t doing anything for her. In fact, they patentedly refused to adjust. I called them on it. They ran and hid. End of story. I make no apologies for calling people out for poor care and being unwilling to adjust. You don’t have to like it, but I am not going to let people off the hook just because they try to pretend they are doing a good job. Either do a good job or get out. That is my attitude.

  14. The Captain’s Choice
    [url]http://www.youtube.com/watch?v=hoaOQvxigmY[/url]
    [url]http://www.youtube.com/watch?v=Ts8rHCq9Ozw&feature=related[/url]
    [url]http://www.youtube.com/watch?v=1A-17l2tc0I&feature=related[/url]

  15. Closer to the Edge
    I detest “Rum Tum Tugger” types. Put me out, I want back in. I hold two pairs of shoes up, you say black I say brown. When picking a room, you suggest down so I choose up. I’m a Taurus, make a damn decision (I’m a Gemini cusp though, so I get it.)
    I’m going to tell you you’re fighting a losing battle, and that you can’t keep this up forever. But you will. Will. That’s the word. You’re never going to lose that. For multiple reasons.

    I noticed you’re very musical. At least, have a great appreciation for it. The Who. The epitome of virulent fire and brimstone. All the videos you post. It’s a thread, and it’s soothing. Caressing that will.
    From where I’m standing, I can see the edge but I can’t feel my feet for moving anymore. This video exudes the kind of passion and will for moving that is hard to find. I hope it finds you.

  16. No.

    Jani needs her daddy. And her mommy. And her little brother. You CANNOT damn her to a residential life. A friend of mine has schizophrenia that she now has under control. She has horrid, horrid tales of her young adult life bouncing in and out of residential. She is 30 and has problems with trusting her parents to this day. I will ask her if I can share the link to her stories with you.

    You CAN do this. I agree with trying a service animal. So Jani does need to go to the hospital now and again. Don’t you, when you’re truly ill? So what if she’s there for her mind and you would go for a busted appendix or gallbladder or what have you? Same diff.

    Note from Michael: Thank you, Kwanboa. I agree with you and I won’t, no matter the cost. If I have to alienate the whole world, I will keep her and as many other kids as I can out of residential.

  17. What others said about the stress.

    If I worry about so much as a hangnail, my son picks up on it and the day goes downhill fast. He is not NEARLY so perceptive as Jani. Is it possible the constant daily stress could be throwing her off more than, say, moving would? More unpredictability (which would fade in time, as a routine was established) but less daily stress. Ideally, of course. Just wondering at what point the stress vs. change scale tips the other way. (As are you I’m sure).

    My dream for you all: Moving to a mental-health friendly state, with good benefits for children. Living in a duplex arrangement, two homes or apartments side by side, on or within walking distance of a university with a great research program in psychiatry, neuroscience, etc., that would love to work with Jani in the hopes of learning more about her disease, and a good special ed or health ed department with students eager to act as interns to gain experience. A school district that would partner with the university to aid in Jani’s educational planning, with good services for Bodhi. And of course, a job for you teaching, and a job for Susan, right on campus, right near home and all Jani’s services. All somewhere in the country that is affordable, even cheap.

    Note from Michael: Nice idea. I like it; I’m just not sure it exists. I feel like I have to create it from scratch.

  18. One more thing, about the “abrasive” part… I get what you’re saying. Using honey to catch flies may work better, but it’s a lot more satisfying to throw vinegar all over their slimy bodies. (Totally disagree with the idea that it will be more effective. Maybe in a few areas, short term, but the long-term losses will be far greater. At least according to the way we are presently defining “abrasive”).

    Beyond whether it works or not, though… pretty safe bet Jani will pick that up as stress. Not “I’m fighting for you, and other kids like you”… just stress. Again, when does the scale tip in favor of dialing it down a notch to lessen her stress burden vs. this is what I have to do to get her the help she needs? And again… all things I’m sure you’re aware of. Just adding a voice.

    As always, I admire everything you and Susan try to do for Jani, and your strength and endurance in continuing. No doubt in my mind you have Jani’s best interests at heart, and see things much clearer than we do out here in cyberspace. I think it’s obvious a lot of us saw more stress than usual in your post, and worried about it’s effect on Jani. SOMETIMES it helps to hear another voice sort through all the crap going round in circles in our brains, right? So no judgment… just another voice… and always, support and prayers.

    Note from Michael: I get what you are saying. I do. It is a balance. I don’t know if I have found it yet.

  19. Hope
    Michael
    I hope that the world turns, and things get better for you, Jani and your family, I’d love to help out and send you something to help with your rent and everything but I am very short on money myself. I am getting a bonus here this next month and will probably have a little extra to send to help you and your family out. You guys work so hard to keep Jani with you and keep Bodhi safe that I believe you deserve a break from everything else in the world for a little while and you get the help on your rent that you need and everything works out for you. I wish to help out where I can and I will help when I can. Right now all I can offer is the hope and faith that things will be ok for you and that you have Jani back at home soon and safe.

    Note from Michael: Thanks.

  20. I too have been curious for a while about the answer to BB’s question above: “Is there any reason you couldn’t move the family to be near her, wherever she is?”

    I have read your reasons for not wanting to move her to the residential facility as it is too far away, but I wondered why you decided to say in California? I can think of a few compelling reasons (your job, providing stability) but am curious as to your thoughts on this…

    Note from Michael: UCLA is here, as is everything she has ever known. It would be a huge impact on her to move her.

  21. Service Animal
    I don’t want to play “Devil’s Advocate” but there are some hard facts that go along with children and service animals. I know this because I have schizophrenia and I have a service dog…but I’m also an adult.

    Service dogs take 18-24 months to train. That means that if a dog were picked out today for Jani, you would get it in about two years. If you try to get on a service dog program’s waiting list…it can take even longer. Also, there are no legitimate programs that train psychiatric service dogs for children. There are programs that train them for autistic kids. But they are not the answer. They are often called “tether dogs” because the child is often tethered to the dog so that if he/she tries to run, the dog will prevent such. But what happens then? Does the child just accept that it can’t go where it wants to go or does the child get angry and take that anger out on the dog? I know Jani is always amazingly gentle with animals but can you be sure that she will remain so gentle when a dog is being used to control her? How many times will the dog tolerate the potential aggression towards it before responding with aggression itself? Some dogs are also trained to track and find a child who has bolted. They are trained to stop that child, usually by laying on them or standing over them until a parent can arrive. Again…there is the potential for aggression from the child and the dog.

    Another big part of having a service dog is the extreme bond that must form between dog and handler. The handler would be Jani because she is the one that is disabled and she is the only one that has any rights to use the dog. This means that Jani has to interact with the dog and always have its trust. I have no doubt that she is capable of feeding and grooming a dog…but is she capable of continuing its training or always giving it the commands it is trained to do to help her? And what tasks/commands would those be?

    Think of it like this. A very intelligent dog has the mental capacity of a 2-3 year old. So when thinking about a service dog and what it can do for its handler, you have to think about what a 2-3 year old could do for its handler. You also have to decide if you are willing to trust a 2-3 year old with the safety of your precious child, Jani.

    Additionally, with all the stress that it can take to take Jani out of the house, do you want to add the stress of taking the dog as well? Service dogs are trained to be with their handler nearly all the time. It can’t be a pick and choose thing such as “well bringing the dog isn’t very convenient right now…” The dog would need to be present during doctor/therapy visits, volunteering, school, and everywhere else that Jani goes…and Jani needs to be capable of stewarding that dog in public. If she isn’t stewarding the dog all the time, that bond I mentioned will never exist and the presence of a service dog just won’t be helpful…at least not to the full potential.

    There is also the attention that will be gained when you go places with Jani+service dog. People will want to know if it is in training, why a child needs a service dog, what is wrong with Jani, can they pet the dog, and all sorts of other social interactions. Are you, Susan, and most importantly Jani ready for such additional attention from the public?

    I absolutely don’t want to make it seem like having a service dog is bad…I have one and it has been a true blessing. But with children, it can be an entirely different scenario.

    I really have the best intentions by saying all of this. I want you to understand the reality of what exactly having a service dog means. I don’t want you to get into a situation that doesn’t work because that would be bad for Jani.

    I’m sorry if this came across as rude or inconsiderate.

    Note from Michael: Not at all. Just because I see some merit in an idea does not mean I am going to run right out and do it. You should know me better than that by now. I agree that for schizophrenic children a better option is regular animal interaction, which is what Jani gets. For example, at her horse therapy, she also has to (and wants to) take care of the horses, but this is not constant. I agree it would likely take to adulthood for Jani or any other mentally ill child to be ready to handle a full-time service dog. The idea of the Jani Foundation is more to provide mentally ill children with access to animals under supervision and opportunities to build relationships with those animals over time as well as learning to take care of them.

  22. Hope jani is doing better. Hope she dosen’t have to stay too long in the hospital. Do they treat her nice when she is in the hospital? maybe she will Just wake up one morning and she won’t have schizophrenia any more.

    Note from Michael: I don’t know that she will ever wake up and not have it anymore. Like diabetes, it is a lifetime illness. However, yes they do treat her well in UCLA. It is her second home. If we didn’t feel comfortable and she didn’t feel comfortable she wouldn’t be there.

  23. Michael I have been following Jani’s story for the past year and a half. I am very sorry to write this and I know it will make you angry. I think you and Susan should find the best residential option available for Jani, move to that city/town and have her placed. You could sign Jani out on evenings and weekends. You and Susan would have some quality of life and give Bodhi the attention and care that he needs. You have written about how well she does in the hospital setting. She needs the kind of extreme order and schedule that only a residential placement with a full, highly qualified staff can provide. It would also give her wonderful opportunities to connect with her peers. UCLA is a fantastic hospital but there are other fine hospitals in our country. I think you are under an inhuman amount of stress and you can’t continue like this. Jani picks up on that stress (like any child would) which makes her symptoms worse. No matter how we try to pretend that everything is ok, kids are smart and incredibly intuitive (especially those with mental illness). You can’t keep trying to be perfect, you are human. The contant financial crises would put the majority of us over the edge. I would look to other families who have made the decision to place their child in residential and I would ask myself-do I respect them less? Is there something different about our situation that allows us to function without that support? Is their child doing well or better in a residential setting? I know you’ve written about how you respect those families and don’t look down on them. Is it really that residential is such a horrible option or that going that route would make you feel like you failed Jani? As always I wish you the best and truly don’t mean to offend in any way.

    Note from Michael: No, your comments don’t make me angry nor do I take offense. I just disagree. I could (and have) gone into all the reasons why, as well as more I just found out about. Did you know that residentials don’t have nurses on staff 24 hours a day? You have kids on heavy psychotropic meds and the nurses go home at 5pm. Second, a residential is not like a hospital (partly for the reason I stated above-no constant medical supervision). And UCLA is the best hospital that we have found. Third, Bodhi is not neglected and is getting what he needs. Other than constant love and affection, he gets all the early intervention Jani never got because he has a developmental delay (speech primarily). Fourth, nobody will ever care about Jani as much as we do. I am not willing to trust her care to others who don’t have that investment. Finally, what message does that send to her that we sacrificed her for the rest of the family? It is unnecessary because of the two apartments. Do I have to beg online for money to pay for them? Yes, but that is a small price to pay to keep my family together and for Jani to know that we never gave up on her. Finally, no, I don’t judge other families for putting their child in residential, but it is simply not something that I am willing to do. End of story. In the end, whatever stress Jani picks up on as part of our struggle to maintain this life is still less than what she would experience if we gave her up.

  24. Jani could get occupational threapy at school counden’t she? Because When I was her age the school made me go to Occupational threapy Through my IEP At scool and speech therapy and I had Bipolar.

    Note from Michael: She does get OT from her school district: one hour every school day.

  25. In regards to what Heather, above me, wrote:

    Are you sure it would be a negative impact on Jani though? I understand when you say that small changes seem to send her slipping away back into her world – but if you don’t try this, how will you ever know? Maybe she would slip for a bit, but then [u]maybe [/u], just maybe, the change in the amount of stress in your daily lives and possibly some better options available to her in a different state might make the difference? I think it could be a viable shot for your family at this point. The things happening in CA aren’t working as well for you as you’d like and you can’t pay the rent where you live – why not make the attempt to go somewhere else and start fresh?

    Also, in regards to clink’s suggestion above – I know you don’t believe a place like that exists for your family to live…but maybe you should at least try to find something similar? We live in a fairly big country – I just can’t imagine that there isn’t somewhere out there that might be a better fit for you, and especially Jani.

    Note from Michael: Believe me, there isn’t. I have looked. If I thought Jani had better options than she does here I would move there in a heartbeat. There are no services. They don’t exist. And moving would just be a wild goose chase.

    And, yes I don’t know how it would affect her. But that’s not a risk I am willing to take. Jani is doing well. I am not going to risk her continued development.

  26. Unemployment Benefits?
    Hi Michael, I don’t know how your contract works at CSUN, but at community colleges, adjunct instructors can apply for unemployment benefits during inter-sessions. Something to think about:
    http://www.smcfa.org/index.php/documents/43-part-time-postbox/1137-part-time-unemployment-benefits

    Note from Michael: Yes, I do know this, and I usually take benefits over the breaks. This winter however I have accepted a class. But thanks for the info.

  27. Michael,
    On Tuesday I contributed to the online support group and I shared what happened at our most recent psychiatrist’s appointment. Behind closed doors and with my 7 year old son present I had a most heated outburst. I probably used the f words 20 times. My daughter who was in the waiting room down the hall told me later she coud hear me AND THAT SHE WAS PROUD OF ME!! She knows the hell we live.
    My point of this post is I have come right out and told people “I am no longer nice”. I salute your “abrasiveness”. I made no apologies on Tuesday when I was ranting and I am not embarrassed.

    We are discussing human beings and our lives!! I had thought 3 weeks ago this doc was making out a referral for us and it turns out she hadn’t!! And during those 3 weeks we spent 12 hours at an ER one day and never saw a doctor!!

    Later that night (and the doc made no change to my son’s medications) he woke up and was having some kind of night terror and started assaulting me… I had to yell and yell for my daughter to wake up so she could call 911..

    For the reader other than Michael, I am single with 2 children and my son has had 3 hospitalizations and I am so fearful he will end up in a facility. He is only 7!!! And I constantly feel I am at the mercy of those with the power. There is a terrible cruel indifference out there.
    And if you haven’t lived it most cannot comprehend it is here right here in the United States.
    Sorry. Ihope I’ve made some sense! So often I feel the 3 of us are drowning and “they” have the life jackets and they decide when “we” are deserving of saving…

    The good news!! I got the referral I wanted. I believe it never would have happened if I was nice. I don’t care if I am liked. I will take solace in being the best Mama Grizzly possible!!! Using profanity is the least of my concerns.

    Note from Michael: Thank you for sharing this, Karen. This is what some of my readers need to see. Our children get hurt over and over by the system. We are done being nice. We will tear apart who we have to save our children. I say to those who don’t like my approach, either join us or get out of the way!

  28. I can’t imagine how rough it must be for you and Susan to bring Jani back to the hospital after five months at home.

    Just trying to be optimistic, though, isn’t it a good sign that she cried when you left (other than the fact that she was obviously upset)? She didn’t do that when she first started going to the hospital. The fact that she obviously misses you when she’s not with you (the crying, and the separation anxiety you mentioned in the last blog) might suggest that she values your company more than the company of her hallucinations, who are with her wherever she goes.

    Maybe that’s just me irrationally trying to be positive, but it’s a thought :).

    Keep fighting!

    Note from Michael: Actually, Cassie, I think you are exactly right. I think it is a positive sign and all the more reason why she cannot go to residential. She needs us.

  29. Why should you move?
    I think it’s sad that there are so few facilities & resources available for those with mental/mood disorders.

    Residential facilities shouldn’t be the only option. Families shouldn’t have to be separated- it’s painful! There need to be more choices, like daytime facilities, Personal Aids available to assist families (not just with children but with adults who are mentally ill), not to mention financial assistance to families who care for our loved ones.

    I mean, people don’t realize how emotionally taxing it is to take care of loved ones with mental illness. It takes so much out of you to see them suffering this way. You often end up not being able to work because of the emotional toll it can take on you.

    Note from Michael: Exactly, which is why we are fighting for exactly those services: You can help mentally ill children and their families without breaking them up.

  30. I don’t necessarily see your indecisiveness as being a bad things. As I’ve said before, I work in the field. I’m a Case Manager in a psychiatric clinic. I work primarily with adults who have Schizophrenia, as well as a few who have Bipolar Disorder. I see people cycle through good times and bad times (with their illness) all the time. We (as a treatment team – doctors, nurses, LCSWs, and case managers) try and keep people out of the hospital unless we absolutely, positively feel they need to go. One reason, the largest reason (from what I understand), is that most of the time when people go into the hospital they never fully reconstitute. Or, rather, they never return to the same level of functioning they were at before. If we can keep them out, then we can, in theory, avoid that.

    And as for those comments… I don’t even know where to begin, so perhaps I shouldn’t.

    I hope everything works out for you guys. I think you’re, without a doubt, doing the right thing. Residential can be a good option, but never for a child. Doors do open up in terms of services as the consumer gets older, but how extensive the services are depends on the state the consumer lives in, unfortunately.

    Note from Michael: I can’t speak to adult schizophrenia but with children occasional hospitalization is necessary and the child’s functioning generally improves (providing the stay is long enough and there is a support system waiting on the outside). Children are growing up with this illness so periodically they will need an environment where they can de-stress and gather themselves together again for the next round of battling between their world and ours.

  31. MY HEART HURTS
    Michael and Susan:
    Let me begin by saying how strong you both are, Listen to each other, Jani needed to be hospitalized, Susan realized that, its that time of the year when depression and psychosis takes effect to worst case scenerio, from what i have read Jani is very perceptive, but yet asking for help from people that seriously care and that can help is not causing this psychosis, me head is so full, so over loaded wanting so much to help giving the advice you seek, yet i cannot express myself properly with email, I HOPE SOMEWHERE THIS MAKES SENSE MY HEART AND SOUL GOES OUT TO YOUR UNIQUE FAMILY

    Note from Michael: I get you. Thank you.

  32. Greetings Michael,
    You’re a great parent, hang in there and stop beating yourself up. If Jani needs to be in the hospital to stay safe, then she should be in the hospital. It will be short term. It’s heartbreaking to have to ask for your child to be admitted, you feel like a traitor and a failure, but your childs needs and safety come first. Fortunately I can speak with experience AND can offer you remarkable hope.
    Long story short, my 24yr old son was being diagnosed with schizophrenia, we live in Minnesota. When it’s 10-20 degrees below zero outside and he’s going outside without a coat, I can’t keep him safe. Broke my heart to have to fight to get him admitted. Worse yet was when he got away from us, he went to another city, we tracked him down because we could check his bank account on-line and he’d checked into a motel. Had to have him arrested to get him in the hospital. His feet were bleeding from the constant pacing and walking he was doing. That was in 2004. His illness was very severe and we weren’t given much hope. Ready for the good news?
    He’s healthy now. His thoughts are clear. He works hard at this and is very much on top of his medications. Wow. He was in college when he got sick. As of this semester he’s back in school, taking one course at the local community college. He’s getting a B+ so far. Can I say wow again?
    How did we get here? 4 month hospitalization at an excellent hospital, thank you Anoka Metro Regional Treatment Center, an excellant local psychiatrist, the right medication (Geodon mainly) and a lot of determination (don’t let me forget the grace of god).
    I have high hopes for Jani, she’s a special girl with a lot of determination and strong support. I hope a med can be found that will clear her thoughts. I think the FDA is approving Geodon for use in children? Much less side effects than risperdal, haldol, etc, etc.
    I’d tell you to hug Jani for me but I know with her illness Jani probably wouldn’t like that. Seems to be such oppositeness with schizophrenia. Hang in there, Anne

    Note from Michael: Can I second your wow? Actually, Geodon is used off-label for children now. Some children I know have responded well to it but not Jani. The atypicals don’t generally have any effect on her psychosis. However, the combination of clozapine, lithium, and thorazine, although heavy, has made her reasonably functional and able to enjoy life again. I am optimistic. Tell your son he is one of my heros.

    As are you.

  33. I really respect your decision to keep Jani at home with her family rather than in a residential treatment facility.

    Based on my experience, the staff in the children and adolescent wards have no idea how to deal with patients who have actual mental illness, not just behavioral issues. A few years ago, I had to be put in the Loma Linda BMC adolescent ward for bipolar mixed episode with psychotic features. I was having auditory and visual hallucinations and was unable to think rationally and logically. It seemed like this staff would mess with my head. I would get angry at this and sometimes get out of control and violent. They would put me in isolation and tell me how bad I was acting. This only made my problems worse of course. They seem to treat all the patients like they were all admitted because of behavioral problems and like being in the hospital was some sort of punishment. This just confused me. They treated me like I was some sort of troublemaker. All the staff thought I some drug addict who was running. Actually, I’m a straight A student and I have never really been a kid that breaks the rules. Why was I being lumped in with a group of people who were either drug addicts, criminals, or mentally retarded people? I hardly ever got to see an actual doctor. It was mostly LVNs who I don’t think are fit for the job. Go to school for a few months and take care of people suffering from a wide variety of mental issues!

    Anyway, the point is, the mental health system sucks, especially for young people. The only sense of peace and comfort I got in the hospital was when my parents came to visit me, and of course, that time is supervised and limited. I would have been so much better if I could just go outside and be with my family. Of course, hospitalization is sometimes necessary. I just don’t know how much hospitals can do for people. I guess they can keep people from hurting themselves, give medications, or evaluate behavior and diagnose. I don’t know how much one of these places can do for Jani but I am guessing that your love and caring for her goes a lot further than hospitalization. It’s amazing that you sacrifice so much for her. Sometimes, maybe in this case, hospitalizations are necessary but don’t give up and put her in a residential facility.

    Note from Michael: Never. Jani was once in Loma Linda and we had the same experience. They really bully the patients. There is no love there. Glad you are okay.

  34. First – I am so glad you guys were able to pay the rent. While I can’t send money – I can pray…and did. I know. Prayers do not directly pay the rent…they may not even indirectly pay the rent…who knows. I have faith that they do.

    Second – here – I will tell you what you want to hear.

    Dear Michael and Susan,

    You cannot possibly keep this up. No way. No how. This is a fruitless effort. Residential is a great option. Just do that. Put Jani in a residential placement and enjoy your life. You and Susan and Bodhi will live happily ever after and this is what is best for Jani, too. This is what people in these situations do…and trying to buck the system is stupid. Just get with the program…what – do you have ODD or something?

    Sincerely,
    Lori

    Okay…so obviously…that was bologna and quite frankly this sort of thing is not what motivates you. I don’t know you and I don’t know Susan, but from what I can tell – that sort of thing may infuriate and invigorate you, but it isn’t what keeps you going. Is it? I don’t know the despair that you and Susan feel. I cannot comprehend what happens at the moment that you admit her into the hospital, but I think that you feel that you could possibly be defeated because you had to admit her…is this one step closer to admitting defeat and totally caving? You feel out of control…because let’s face it…you spend much of your time trying to control this thing and when it “wins” you must feel like you have failed. Guess what. You and Susan have not failed. Losing a battle does not mean that you have lost the war. Isn’t this a long stretch in between hospital stays for Jani? While a hospital stay is not something to celebrate…the distance in between them is – no?

    And – there must be a fine line between ODD and what separates the mice from the (wo)men…don’t you think?

    Note from Michael 🙂

  35. Animal Assisted Therapy
    I do think that allowing Jani and other mentally ill children to spend time with animals is a great opportunity. So much research shows the benefit of such.

    And you are right, I jumped ahead of myself by worrying that you would run straight to service animals as a solution. I know that isn’t your way and I am grateful that you have that wisdom…in all areas of what might affect Jani.

  36. Hi Michael,

    I just wanted to say hi, and send a virtual hug to you. I would say ‘Happy Thanksgiving’ to you, but I know better.

    I’ve thought about how strange it is, how strange indeed, that there are always those people who, when they see someone suffering, rush in to make a bad situation worse.

    To say that mental illness carries a stigma is an understatement. I’ve seen parents of children with “medical” problems, and they receive endless support, compassion, well wishing. But when the problems is autism, mental illness, or the like, all too often the reaction is to judge. This–even though the aforementioned disorders ARE medical problems, and have roots in organic brain malfunction. Draw a picture of family history and the proof is there. My sister has been in and out of the psyche wards for years, had electro shock therapy, which made her ACUTELY suicidal for weeks, and has been on virtually every med known for treatment of depression, anxiety…We have numerous suicides in our extended family, my paternal aunt having nearly died from a deliberate overdose, my son’s great aunt also a suicide. Too many cases of substance abusing relatives to list. A family connection? Undeniable.

    To answer those who will now say–‘Then knowing your family history, why did you elect to have children?’ It’s called that human thing that we all have even when we say we don’t, optimism. Hope. As Michael once explained, when you have a baby you’re not thinking, ‘What is he or she is schizophrenic?’ You’re worried about ‘normal things.’ Is there spina bifida? No? Great! Normal weight? Wonderful! All limbs normal and present? Great! Heart functioning? Terrific! And how relieved we are, knowing that these are very real threats, that do strike so many infants. And make no mistake, I have great empathy for any sick child. What I am saying is, we don’t think, could this child have mental illness? We tend to think that happens to adults, adults who have survived traumatic lives. Not cute little kids, who look like Gap babies. My son was adorable, sky blue eyes, and silky black hair. Great birth weight, unusually tall. Nurses said he was just beautiful. Great, every thing went well. Success!! When Michael explained that to look at Jani, and see she is obviously beautiful, you’d never know…It rang an immediate bell, me thinking of my son.

    Then we go home and this new beautiful baby can only sleep for 15 minute stints, is having trouble nursing, cannot be comforted.

    Fast forward 7 years to a firm diagnosis. By then he had already tried to jump off a balconey; his teenaged brother caught him as he was already falling. (I KNOW that sounds implausible, but IT DID happen.) Thank God, he caught him…I was hearing hushed labels like “austistic, mentally disabled, learning disabled,” and a whole host of other labels. Of course I KNEW within days of bringing him home, that there was something wrong, very wrong.

    Funny–my mother has been supportive, and not supportive. I gotta give her credit; most people are NOT, NOT and NOT supportive. But I am grateful for her response when I called her to tell her what the neurologist told me. I was crying; somehow hearing the words drove home the reality in a way that was acutely painful. And she told me the diagnosis changed nothing. He was still the same child I’d known and loved always. It changed nothing before, and changed nothing afterword…

    Eh, I know I’m babbling here. I’m not even sure what my point is. Just wanted to talk a little, and I’m grateful for any one who is listening.

    Sending you my love, Michael, Susan, Jani and Bodhi. Remember we are together if only in thought.

  37. love…..
    Let the love you have for your child guid you….you can not control tomorrow, but you can do your best today. Have faith in yourself with every action and decision and know that it is the right one at that moment.
    As a previous hospitalised mentally ill patient(although and adult)I can assure you that the temporary visit does in some strange way help. There is no presure frome the noise of life, only the “routine” of the hospital environment. When I look back at my stay’s within the hospital walls I see the ease,peace and security it offerd me. Although Jani is still a wee little girl I believe she understands this on her level. Do not feel guilt, see her hospital stays as a time to “re-group” so that you can be the best parent to her you can. This is the kind of support and love that all mentally ill patients need…..long and short term. My loved ones have never given up on me…..

    Note from Michael: Thank you. That is what I believed but it is nice to hear it.

  38. Troubled by your Show on Jani……
    Michael,
    I just so happened to come upon your documentary this evening. I am so touched and so upset at the same time….

    Jani is a GEM! You knew she was a gem the day she was born. It is clear that you both were great parents from the start….. noticing her advancements in life while only a tiny baby….. taking notice that it was not normal….. You paid attention with that watchful eye that although every parent should, they don’t…. Take no fault here.

    I continued to watch and saw what I thought was a bratty child…. you remedied that quickly and showed your sincere attempts to get help. You comforted her, you held her. You BOTH gave her your life. You gave her your life expecting nothing, wanting nothing, hoping for nothing other than a happy, spoiled, rotten baby girl. Take no fault here.

    Then, you have another child. I am immediately scared for your child…. your baby boy. You still have a little girl to care for, But NOW you have a child, an innocent child.

    Surprised, you take the most extreme measures and protect your boy from harm. I was so so so shocked to see that you moved into 2 apartments. The two of you must be so bonded together to do such a thing. Take no fault in this.

    You continue to seek help. I am so astonished at your efforts. By the end of your documentary, I was exhausted. How exhausted must you be living this life? I am exhausted. So, are the both of you.

    My first concern: Your innocent baby boy. I don’t care what the (2) of you do, as Jani gets older, she will get stronger. She will hurt him or all of you.

    My summary, and it is sad to say: I had (2) cousins who were “weird” “differant” “schizophrenic”. He went into hospitals. My Aunt got him help. Is he ALL THE WAY BETTER? No, he will never be. BUT, he is somewhat normal these days. Bottom Line – After time, We turned our heads for a few minutes…. we minimized his sickness. He caught on….. He understood.

    Really, what I am saying: You are allowing Jani to take over your lives. By NO MEANS do you turn your back on your child…. again, I cannot commend you enough for what you have done. On the same note, you have allowed her to consume you and your son. You talk about speaking in front of her about the eviction for only a few moments and her possibly suffering affects from the eviction stress. What about your son who suffers his whole life hearing about Jani’s problems. She totally has control over your life. Is it fair to Bohdi? This is where you take fault. I know, it’s a catch 22. Don’t turn your back on Jani… You are damned if you do…. damned if you don’t.

    Show Jani you care about yourselves and your son. Tell her she needs to try if she wants to help herself.

    At this point, you are sacrificing 3 people for 1. I believe she knows that and understands. Put the ball in her court. She’s getting old enough to understand. I believe if you move back into one apartment and put her into a home, she will expedite her progress and it will help your family.

    Don’t ever turn your back on Jani…. that is a true disaster. Please display that you care…. Move back into one apartment. I believe she will hurt you if you don’t take charge. I hope you believe this too.

    Happy Thanksgiving.

    Best Regards,
    H

    Note from Michael: Well, Heather, I am glad you are not Jani’s parent. You have no courage to deal with this. You don’t throw away someone who is “difficult.” You seem to think that Jani’s actions can be controlled. She will not “expedite” her progress if she is put into a residential facility. That requires a logical thought process, and I don’t think you understand that. You seem to think if we punish her she will get it. Yes she will, but she can’t change it. You don’t understand what it is like to have your mind taken over. She will just become distrustful and angry. The only home Jani is going to is with her parents and her brother.

  39. a little extra help
    Hello,
    This is my first time ever blogging on anything, or even searching to contact anyone. I saw the TLC episode about your family mths ago and realized tonight that it was being aired again. You and your family are amazing! I find my life challenging being student and mother with a partner who is away. There is no challenges in my life as difficult as yours. I’m a student studying acupuncture In British Columbia and through my school which is a integtrated holistic teaching facilty I have been exposed to many alternative healing modalities.Saying that you and your wife know more about this disease than I do, honestly I do not know much. I recently took a workshop on seaweeds and the instructor who was also a marine biologist (not a total hippy)mentioned in her lecture how seaweeds especialy Bull Kelp has cured schizophrenia in some cases, or at least help reduced the symptoms, especially aggression. Apperently scientist are doing lots of research in this field trying to figure out why it works.In your daughters situtation, maybe it would help the tiniest amount which I’m sure would make a diffrence. I know that the last thing you need is some stranger sharing a thought. Sometimes western scientific medicine doesn’t embrass the simple things in life, like bull kelp. It’s easy to use, instead of salt we now use Bull Kelp in some of our meals.
    Sending you supportive thoughts.
    Suzanne

  40. Miss Jani
    I am not a doctor or an expert at any particular thing in this life. i just watched your stoy on TLC and felt so compelled to contact you. I am not meaning to cause any disturbance, but I just wanted to ask if you have ever thought of January as being a medium? I do not expect a response nor am I sure I want one as I said I am by no means an expert. I do not know how spiritual your family is and again, I am by no means trying to cause conflict in your lives. It just seems to me that your child is very gifted not in just books and reading and things of that sort, but she is gifted in a way most of the world does not recognize. I will pray for protection over your family and send many blessings your way. May God continue to bless you and your family.

    Note from Michael: I am not offended. I have answered this question before. Basically, it doesn’t matte. The end result is still the same that her life is in danger so we have to treat it. However, that being said, I do feel that sometimes we tend to look for more complicated answers because the idea of a child suffering from an illness is difficult to take. But to survive it one has to look at it like diabetes. You manage it. It is not necessarily a death sentence. I really want people to see mental illness just as they do cancer or any physical illness so I don’t encourage “alternate” views of the causes of schizophrenia.

  41. Michael – I can’t tell you to make that decision. No one can tell you that. You and Susan are doing everything you can to give your children the best that can be had. To see that in our society, to follow your story, amazes me. I cannot imagine the strength that you have, and how hard it is to make the decisions that you make daily.
    I taught for several years and worked with kids with special needs in the past so appreciate the challenges and blessings that they are.
    I do think that we are put here with the people who will help us along whatever path we are supposed to be traveling. I don’t know if that’s your thoughts or not…..I do think that Jani’s here with you for some reason. Enjoy her and love every moment (as I know you do).

    Note from Michael: Yes, I believe that. She has already touched the lives of so many people. She has certainly changed my life, given me a purpose. She lets other kids know they are not alone.

  42. I also cannot tell u that u cannot do it. I just finished watching the TLC special about Janni…What a beautiful and special little girl you have. I admit that I have only read this one entry of your blog, but I am already engrossed in your familys story. Maybe its because I have a 6 yr old daughter myself, I am trying to put myself in your shoes, and cannot begin to imagin what your life is like. As a single mother since her birth, I often felt that my job was harder than that of “normal” families. WOW, I swallow that thought now. Janni has touched my heart, and so have both you and your wife. I really wish I had a couple of pennies to rub together to send to you, but all I have is my thoughts and prayers. You are both amazing parents, don’t listen to anyone who tells you differently. I’m going to crawl into bed and hold my baby girl tight. Good night, hold in there…you CAN do it.
    Kelly

  43. Thanks to my insomnia, I stumbled across the show about Jani on TLC. After that my curiosity led to your blog and the radio show. I don’t even know you guys, but you’re the strongest people that I don’t know. Hearing your voices on the radio show and reading your words on the blog brought a reality to your story that the tv special couldn’t. My prayers and thoughts are with you. I don’t know anybody with schizophrenia, but my mother is bipolar. I can only imagine what Jani, Susan, Bodhi and yourself deal with from day to day. All I can really say is stay strong…keep going.

  44. Auto immunity associated with Schizophrenia?
    Hey guys,

    I just watched Jani’s story. The only interaction I’ve had with schizophrenia is a neighbor my street basically supported by giving her and her hubby odd jobs. Recently, due to her not taking care of herself and self medicating with Alcohol the state has put her and her hubby into a residential facility and I got her cat LOL!!

    Somewhere up there^ someone said there is a theory that there is an autoimmune component to this disease involving the neurons in the brain. Has there been any research on utilizing drugs that treat MS to help treat this disease as that seems to have the same issues with the body’s immune system turning on the nerves or is the mental health community still treating this as just a mental health issue and not really putting forth the resources to find a good medication? I’m sorry my knowledge is limited. I was awestruck at what you and your family have to do to just survive this disease. It has to be heck on your marriage and your sense of self and just living life because this is all-consuming.

    I would never be the one to tell you what you are doing is right or wrong. I am amazed by your love, but you and Jani both need a break sometimes from your worry and stress that she will harm herself. She needs to recuperate from you and her worry about your worries. She knows….kids always know when there is stress and remember Jani is EXTREMELY smart.

    Happy Thanksgiving! Wishing your family much happiness this year. Here’s to finding a new drug that will work for your daughter. Kiss the boy too!! He’s gorgeous too!

    Sincerely,

    Maria Marino

    Note from Maria: I confess I am not an expert on research. Probably because of our own day to day struggles Susan and I focus on services and quality of life for mentally ill kids and their families, so I am not up on the latest research unless it gets pointed out to me.

  45. The prognosis is Good!!
    Hello Schofield family. My name is Anabel and I have a daughter 4 months older than Jani. I have seen your documentary on TLC many times. My heart goes out to Jani and all your family. You both look so tired and worn out but continue to move forward because of the love for your baby girl. I have placed your family on the prayer list at church which is a very large congregation called the Packinghouse (Calvary Chapel) in Redlands ca. We will con’t to pray so get ready to see God move because he has heard your prayers. Jani’s prognosis is peace, love, and victory for the rest of her life. You both have a precious little girl and God loves her and will be with her through her journey.

  46. Hi Michael,

    I just saw Jani’s story on TLC and went looking for more online. All I can say is ‘wow.’ Jani is the luckiest girl to have you two as parents.

    My aunt was diagnosed with schizophrenia long before I was born. I only saw her at Thanksgiving and Christmas where she would sit in the corner of the room by herself. My brothers and I didn’t know what to think of her. In fact, no one ever really interacted with her. She was the aunt we were told to not approach.

    After dinner, she’d be driven back to the care facility where she lived for most of her life. She died a few years ago at about 70 years old. My dad would sometimes say I reminded him of her, meaning I was bright yet very fragile. It makes me sad to think I never got to know her to see if he was right.

    You’re a very good father, Michael. Whatever you do, it’s [u]not [/u]the wrong decision.

  47. My heart goes out to you and your family. I am a special education teacher and work in a school specifically for children with severe emotional behavior disorders (EBD). The hardest concept for people (not familiar withEBD) to understand is there is not a quick fix for children with an EBD. You simply don’t give them a pill or send them away and the symptoms go away. It is a constant battle of behavior modification, medication changes, compassion, and understanding. I also understand the importance of strict schedules which at times are difficult to manage. It is wonderful to see parents fighting for the needs and rights of their child. We are our childrens’ advocates.

  48. just wondering
    hi michael
    i agree with you that jani is too young for residential. not to sound weird, but i would have real trouble trusting all the staff and patients that i have no knowledge of with my beautiful little girl. she is too young and small to defend herself, and would be too far away from you to tell you what was going on. even if you lived in the area. its not the same as being home. maybe im paranoid, but i see it as a perfect storm for abuse to happen, and for children to be taken advantage of. she cant be watched every second in residental, and it worries me to have her alone there. i think youre right to keep her home, though eventually to do that you may have to get one apartment. it might help the financial stress. maybe you and susan could take turns sleeping in each childs room each night to keep bohdi safe at night. during the day, maybe Bohdi could have some kind of sensor on his door so you would know if jani was going in his room? they also have personal alarms that bohdi may be old enough soon to keep in his pocket, and if he felt unsafe he just pulls it, or however it works, and you would know he needed you. it just starts shrieking. it would give him a sense of control. im just brainstorming. i dont know. there must be something he could have pinned to him or in his pocket to let you know he needs help. maybe if you made the change slowly about moving, jani would adjust ok. just moving a few things a day, talking a bit about it every few days. maybe letting her help by packing boxes and putting tissue paper in the boxes, making to do lists, picking out a new border for her room, etc etc…i know she loves animals, fish, planets. maybe they have cute borders like that to make her room feel peaceful. then she has a say in things, and may feel like some stuff is her idea, and therefore she may feel like she has more control in the move. just a thought. i just notice how smart she is, and that she likes to help and please you, so like i said. maybe if you can move, and do it slowly and with her help, she might adjust ok. just ideas though. you know her better. do you have 2 full or queen beds for 2 rooms? maybe in the bathroom if theres 2 sinks, you could have janis sink and bohdis sink. i am just hoping that eventually you can move in together, and it would relieve a lot of finanacial stress and you could keep jani with you. she needs her family and she needs ucla. i just cant believe people would even think residential would be good for such a young child. you all need each other, and i believe there is always a solution if we just put our heads together. look what susan did with the 2 apartment idea? that was perfect for you all at that time. i would love to talk to susan. she seems like such a nice lady. i really like her. well thank you for listening to my ideas. i hope there was no offense taken. i admire your family. does jani and bohdi like fleece blankets or do they have a million of them? if they would like one, what themes do they like, and what colors?

    all my love.

    ps: why does bohdi upset jani so much? is it too much stimulous because of his age and movements? she seems to care about him and i thought i heard that she wanted a baby brother or sister, so i am assuming its not a pull for your attention? is it the extra noise and crying? hopefully the older he gets, the easier it will be for her. and by the way, i dont think bohdi lacks for attention, love, or anything. he seems to get all his needs met just fine. i can tell. i used to work in the schools, so dont listen to people.

    Note from Michael: It is not her who doesn’t like Bodhi. She loves him. However, some of her hallucinations have issues with him. Who or what they target really has no logic. That is the nature of psychosis.

    However, Bodhi is getting older. We just want to give him more time until we move back in together.

  49. Micheal, I visit your blog when I feel like giving up. You and Susan amaze me and I think you’re doing an incredible job just by staying alive and, even more amazing, staying together through all of it. More than your writing, which I enjoy, or your insight, which is valuable, I’m inspired by the fact that you choose to keep going. Tomorrow when I get up and do it all over again, I’ll think of your sweet family and that will help me. Thank you

    Note from Michael: Any day above ground is a good day. Remember that, Naomi. Any day that we all survive is a good day.

  50. You inspire me
    Hi Michael,

    I am a teenage girl, and I need to tell you something. Maybe you have heard it a million times before, maybe you havent.

    I was on my way to bed last night and the tv was on, and as I was about to turn it off, I started hearing the voice of very concerned parents. It was something that I totally wasnt expecting, and I couldnt turn off the tv. I just sat there and watched the show. It was your story, Jani’s story. The story of a beautiful girl, who in her heart is trying to do the right thing, even if it doesnt seem “normal” by this world’s standards.

    Your story has touched me very much. And I need to say this: it is a big inspiration for my future.

    I have always loved kids, but it wasnt until I realized the difficult things that families go through with kids with disabilities, either mental or physical, that I knew that I wanted to help.

    I have personally been touched by a little boy who had Spinal Muscular Atrophy and passed away this past summer when he was about to turn 2 years old.

    Then, last night I hear from Jani through what it was just supposed to be me turning the tv off.

    I want to help families like yours, and I know this is probably what many people say. But I am 17 and I truly care for kids who deserved to be loved just as much as any other kid, and as well I know the parents deserve a break too once in a while.

    It breaks my heart to know that you think you are not doing a great job. How many kids would die to have parents like you! who care about both of their kids!

    Please, from the bottom of my heart, dont doubt yourself. You are an amazing parent, and I know Jani will one day look back on it and thank you.

    I have decided to go into the field of Neuroscience next year, for one simple purpose, to help families like yours. And i’m only doing that because I am sure they wont let me help if I dont have a paper that proves I want to help. If only people could read hearts…I wouldnt have to wait four years to help.

    Lastly, i just want to say, keep strong, smile, and know that there are many of us out everywhere wishing you the very best. If there is anything I can do even if its very far from where you are, please let me know. I am no doctor, or college student, or professional. I am just a 17 year old girl that truly cares for Jani and her family.

    You will be in my prayers.

    With Love,

    Paulina

    Note from Michael: Paulina, I am so sorry about the death of the boy with spinal muscular atrophy before he was even two. Hearing things like that makes me feel grateful that I can still hold both my children. I can’t imagine losing one of them. It also reminds me that there are always those who have it worse.

  51. I have been there
    I just learned about your family a few days ago, by chance, while flipping channels looking for something to de-stress so I could get some sleep.
    I too, have a daughter with schizophrenia and I have had many days when I was just so exhausted I simply could not think straight.
    My daughter is now 23 and I have managed to keep her out of the hospital while taking care of two younger boys, all by myself, because her father simply could not deal with the situation.
    Try to keep your family together, on those times when you have to leave Jany at the hospital, do something as a family with Susan and your lilttle boy. I know it is not easy, but it is the closest thing he will have to a normal family situation. Talk to him about his sister’s condition and explain as much as you can as he grows up. Don’t let him grow up being afraid of her. My boys, now 15 and 10 love their sister fiercely and their bond is one of the anchors that keeps my daughter stable. They are her best friends now, but it has been a long – ten year – journey.
    In the TV show I observed a couple of times when Jany seems to want to go back to the hospital, maybe a residential facility where you can visit with her frequently would eventually be the right option?
    Can’t really tell you what the right answer for you is, every case is different and Jany’s sympthoms are a lot more severe than my daughter’s where. But I CAN tell you for a fact that stress is a big no no – anything that threatens her routine and her stability is going to throw her off. So it is important that you and Susan take care of yourselves if you want to be able to help Jani.
    Like I said, I have years of experiences I could share with you, I’ve left my email address in case I can be of any help to you or any of your readers.
    Righ now all I can do is let you know that you will be able to do what you need to do. You don’t know how strong you can be until being strong is the only choice you have. Hang in there, keep together, and treasure every moment, the good ones for the joy they bring, the bad ones for their learning potential.
    You are not alone, and yes, it can be done:)

  52. Michael,
    On Thanksgiving Eve I wathced Jani’s and your family’s story on TLC channel. I could not believe my eyes when the description of the show was about a little girl with schizophrenia. I could not get Jani and your family out of my thoughts and prayers after that and while the Thanksgiving prayer was said before dinner your family was in my thoughts. I have since read all of your blog entries, and my heart aches for Jani and all of you even more.

    My mother had worked for a local Psychiatric Center in Rockland County in the medial records dept. and used to tell me heartbreaking stories of young men in their late teens and early twenties who were admitted. So when I saw the TLC show and read your blog entries I thought of the stories my mother told me of those young men. BUT they at least got to have a “childhood” without the ravages of schizophrenia. It seems Jani has been dealing with this since birth. Unbelievable!

    I certainly believe both you and Susan have chosen the right thing to do by keeping her with the family (not that you need any justifiation from ME)as hard as it has been for you all. Seems like the best place for her to be is with her family. She deserves to have a childhood with her family and you know how to “treat” her best. It seems to me “residential” would not give her the “love” and patience she needs to get through each day, each hour, each second.

    At this time I cannot contribute as both my husband and I have been unemployed for a very long time. So for now, all I can offer are my prayers for Jani, you, Susan and Bodhi. And I will certainly think twice when I am so overwhelmed and upset at not being able to pay the bills, etc.

    God Bless.

    Note from Michael: My deepest thanks.

  53. By the way the last entry on this blog says Jani was again hospitalized and was concerned and wondering how she is.

    Note from Michael: She was only in five days, her shortest stay. She was released the Friday before Thanksgiving. She is struggling a bit, exacerbated by the fact that we had to go to the Bay Area to visit family. Susan’s grandmother is 93 and wanted to see the kids. She can’t travel, so what were we to do. But it is going to be hard for awhile. Winter is always hard.

  54. elsewhere
    Michael,

    Everything in our world comes down to a choice. Informed consent to most parents and families means that they decide whether to do an extra day at Disney or go to Epcott. They have never even heard of the pages and pages of horrible consequences we sign each time we place our hopes and our last desperate attempts for help on a pill. Every moment of our world is dominated by choice based on informed consent.

    I cannot tell you what to choose. I can share with you what our informed “consent” ended up being. Our “consent” was imposed upon us by others and by the law. With the benefit of two years of hindsight and some unexpected objectivity, I do see how this choice was for the best for our family. Logan lives elsewhere and our other children are finally safe. We have fought long and hard to remain his FAMILY and his FAMILY FOREVER. He will need care for life. He will need support for life. And his daily care and support are so far beyond exhausting that there is no word in our language to describe it. I can finally now see why we needed this choice even though we thought it would kill us. Instead of death by broken souls and hearts, we have somehow found the reserves to keep going from day to day. With time I have learned to see as his mother that this time is our “respite.” His elsewhere, his safe place that also affords my other children safety, lasts only until he is 18. Then elsewhere closes its door and most elsewhere residers obtain brief freedom in society until they discover an adventure that will get them invited to reside in a different elsewhere filled with offenders. We are now fighting off the longer term battle of avoiding the offender elsewhere of 6×8 long term resorts.

    Just because Logan does not reside under my roof does not mean he’s not my son.

    He’s my son forever. He’s a part of my soul. And now I can see how it is my job as his mom to help guide him from one safe elsewhere to another safe elsewhere. It’s my job to love him no matter what his illness makes him do. It’s my job to be the only consistency in his life, from the beginning to the end. He may need to live elsewhere, but I believe that his life is infinitely better by having parents who love him to the end.

    But that’s just us.

    Your love and devotion to both your children is crystal clear. Your dedication to both of them is what pumps blood through your body. You make the best choices you can based on well informed consent. You will fight as long as you can and then some. And should the day ever come when elsewhere is on your doorstep, you will carry a child there filled with love and compassion and family who will never, ever walk away from her.

    Amy
    Logan’s Mommy

    Note from Michael: I appreciate you sharing, Amy, and would like to invite you to join our private online support group for parents of mentally ill children.http://health.groups.yahoo.com/group/parental-support/ We have many parents who have a child in residential. There is no judgment. I never judge parents. I judge the system that offers absolutely nothing between limited outpatient therapy and residential. I am also opposed to the criminalization of mentally ill kids, which it sounds like is what you are dealing with your son. Susan and I try to use our media contacts to fight for other families so please keep us in mind if you need help fighting for Logan. Your child is my child and vice versa. I hope you join the support group.

  55. Hi
    Hi Michael & family. =D

    I have been so intersted in your story and have recently discovered your blog. I cannot explain how amzing your family truely is. I wish somehow you could erase the doubt you have. Though there may be times you might trigger Jani, the family you guys have become is her rock. Both you and Susan are amazing parents and love both of your children unconditionally. You have no limits. You set both of your children up for sucusses. equality isn’t treating everyone the same. and everyones best isn’t equal. I’m glad you have expectations that push Jani intulecaully and mentally, yet don’t make those goals unatainable.

    I can kind of relate to your story in a way.I am 20 years old and have schizo-affictive disorder. When I was 15 I was hospitalized for suicidal tendencies. And put into residental ( a group home to be exact) There it was the worst 6 months. The staff would neglect us, curse and let other patients do as they pleased (including hurting themselves) The three programs I went through, pysch ward, acute stabilization and a group home were all run through YOU INC. And I agree with you that the best thing for Jani (though you ALWAYS will know whats best for her) is to be in the loving arms of her parents.

    Often in residental you are not allowed to have physical contact with ANYONE. No hugs, or pats on the backs. The only time you can be touched is when the staff restain you. Which makes kids after a while accoiate touching with being restrianed. Plus NOBODY can love your child anywhere close to how much you love them.

    I wish Your family the best of luck, and I will continue to follow you through your journey.

    God Bless,

    Nicole

    Note from Michael: Thank you, Nicole, for sharing your story. What you shared is my fear of residentials. I am sure some are better than others but my fear is where is the love? How do you help mentally ill kids learn to interact with society when they are in what (can be) essentially a prison. Mentally ill kids need contact, not isolation. If a residential can provide this, if it can create a positive environment, then it would be fine. But unfortunately most residentials are filled with kids who are abused/wards of the state, etc. who have psychological issues on top of the psychiatric issues and to place a child in there with no way to defend to themselves is terrible.

  56. …..
    well as you mentioned, I watched that episode about Jani at 10pm on the day before Thanksgiving. I don’t have mutch to say. Im only 15 so I don’t have a daughter to compare or say I know how your feel. But i can tell you that i know that it’s hard.My grandfather was bipolar and ADHD. My moter is Bipolar and she has borderline personality disorder. My uncle is schizophrenic and is in Holly Hill right now. I’m depressed and have bipolar disorder. I had to move to my dad’s because my mom kept trying to committ suicide, and running off with people she met in the psych ward. I myself was in the psych ward not to long ago. I know it’s hard. So just hang in there buddy, cause *not trying to be rude or negative* it’s not gunna get any easier. But you have a wonderful family, with alot of love and these tough times will be rewarded. Those rewards may be brief, and they may not last long, but belive me they are there. So you know, theres no easy decision with mental illness, and answers wont be clear. Just go with your guts. Be strong man.

    Note from Michael: Thank you, Cassie. You have been through a lot. I am on the outside. You are living it, like Jani. People like you are my heroes.

  57. Thank you for being strong for Jani and for sharing your story
    Hi Michael,

    I tried to e-mail you at the address below and it bounced back, so I wanted to try leaving you a comment. My mom recently saw your story on a program on TLC and told me about it. I am an early childhood educator with an interest toward emotionally stressed children and infants (be it stress triggers from mental illness or general life issues.) I am lucky that many of the children I work with are healthy, however I was sincerely moved and touched by your family’s story. When I was studying psychology in school and I first learned that the state had closed down the state run mental facilities, I was shocked. One of my close family friends in Colorado has a brother affected by schizophrenia and without state supported residential care (that is near where she lives) he most likely would have destroyed himself by now. Watching the video clips on the Discovery Health site and reading the information on your site made me all the more committed to challenging the traditional approach to mental illness and realizing that above and beyond any disease there is still a person there, fighting for survival. I could see and can hear the tole that raising Jani takes on your family, and I wish that I could do more right now – my husband and I too are having financial troubles with things shifting right now. However, as soon as I can help, I promise you that I will and for now I can only send you my happy thoughts and wishes for the challenging days we all face.

    AND! Some ideas, haha. Everyone who knows me that I come up with about a million new ideas a day and I can’t use them all myself. Sooo…when I was thinking about your financial hardships I remembered that the company I work for actually offers scholarships for preschool (at least at my center.) You may want to see if you have a Bright Horizons center nearby that is willing to work with you for Bodhi’s care. In addition to being an awesome company with a lot of different types of centers, Bright Horizons is an ally for struggling parents and I know that at my center, we have worked hard to meet the needs of the family – not just collect a stipend. My other idea is to suggest that you start a Cafe Press store, selling items with Jani’s drawings on them with a little information about your website. I was very moved by the pictures of 400 and other friends that she drew during the Discovery Health video clips – I felt that they made her struggles seem a little more concrete and she seemed to be quite talented. It might be a fun way for her to be involved in helping spread your story and help contribute to her care. The best part is that it would be free for you to start and they only take a small portion of the profits when you sell something. I think they’re even doing holiday inspired things like ornaments and the have you right now – just in time for gift giving! If you were interested in this but needed graphical/technical help, I would be more than happy to lend support. I’ve done a lot of t-shirts and graphic designs in the past.

    Please feel free to completely ignore everything in this e-mail too! I just felt like I couldn’t walk away from your blog without sharing something. You guys should be so proud of yourselves and of your family, many families have met easier challenges and let it destroy them. Your strength is inspiring and exciting. I look forward to following your story and hope that you know that you have a lot of people out there sending good vibes your way.

    Warmly,
    Tiffany

    P.S. Sorry it was so long – that’s originally why I wanted to try e-mail! 🙂

  58. Thanks for the update. I was wondering how she (and you all) were doing. It’s good to know that Jani is home. Winter IS hard – agreed. Even in S Cali! (I used to live there….it’s not always sunny!) ; )
    Happy Thanksgiving to you all.

    Note from Michael: Her behavior is fine but she is showing a lot of disordered and illogical thinking. For example, today we were going to meet Susan and Bodhi at the mall and she was convinced Susan would leave if we weren’t there on time and that she would be angry with us, which had no bearing on reality (We live for the moment). Nothing dangerous or violent, just thoughts that make her think bad things are going to happen that are illogical or not based on reality.

  59. Ramblings of a Schizo Girl
    Hi.

    I guess I know a little bit about what you’re going through, since I was a “crazy” kid myself. I first got sucked into child psychiatry at 7; apparently, I was living in a world entirely of my own making. To put it briefly, I was the type of kid who could stare at a Bible for a whole lunch period without moving. In fact, I’d only move if thoroughly shaken. I was totally engrossed by those images. I’d make up entire stories for them, right in my head. I’d play them out just like a director. When I got older, I’d play music to accompany my creations. Soon, I didn’t need to play the music anymore.

    I was about 12 when I started taking medication; I was about 17 when I started taking strong medication. I was 18 when I first got EPS. I was 19 when I was finally sent to a clinic for people with schizophrenia. Honestly, I wonder what took them so long.

    I’m not trying to suggest that I was ever in Jani’s shoes. Her monster is obviously much bigger than mine. However, I thought that you might like to hear from another “crazy” kid – one that, if I may say, has done rather well for herself despite her condition (I’m about to graduate with honors from an Ivy). If anything, I hope I didn’t waste too much of your time.

    Cheers,
    Tani

    Note from Michael: Thank you, Tani.

  60. I don’t get it
    You cant pay the rent but you can travel to visit family for the holidays?

    Note from Michael: Driving 300 miles north to Susan’s family is a hell of lot cheaper than paying for two apartments. We drove and Susan’s family paid for the hotel. I needed cash from Susan’s brother just to pay for gas to drive back. Are you implying something, Kelly? Should Jani be deprived of the opportunity to see her 93 year old great grandmother who can’t travel (the main reason we went) or her two cousins? If you don’t like what I am doing, Kelly, don’t donate. Nobody is forcing you to.

  61. I truely believe in everything that Susan and you do for Jani. Parents are suppose to do everything humanly possiable for your children. No matter what that is. Susan and you are the true meaning of parents. You have to do what you know in your heart is right for your family and stand firm. Do not waiver because of what others say. They are not living your life. They do not understand the daily struggles and sacrifices you both make on a daily bases.

  62. Jani’s Trip
    Wonderful that Jani got a chance to see something outside her ordinary environment. We usually go Highway 101 to our place in Santa Barbara. Love that drive. I hope Jani enjoyed the ocean and countryside views as much as we do.

    Note from Michael: Actually, we took the 5. It is faster. Unfortunately, great scenery doesn’t hold Jani. Thank you (again) for your donation, Carl. You are like our guardian angels.

  63. A Thanksgiving visit hardly seems extravagant…
    I think it’s a sad thing that people have something negative and critical to say about your Thanksgiving visit to family. The assumption that a family shouldn’t make a simple trip to visit relatives because they have trouble making the rent is really smug and condescending–I guess all poor people should just stay home during the holidays, right? It’s not like you chartered a flight to Hawaii for goodness sake. You loaded the family up and schlepped 300 miles to Thanksgiving dinner with an elderly relative…this isn’t just about Jani, it’s about having some holiday joy and a tiny sense of normalcy for all of you.

    I’m unable to donate due to my own financial situation. But, I couldn’t let someone be so nasty to you without saying something. You, Susan, Jani, and Bhodi deserve good things in your lives just like everyone else. Your situation is just a symptom of the fact that you’re bearing the financial burden of a child’s illness personally, without the resources and support she’s entitled to. I know you already know that, but I hope you won’t let anyone make you feel differently.

    Best wishes during the holidays and your long winter.
    Jen

    Note from Michael: Thank you, Jen.

  64. Hi Michael,

    I’m sorry to see that a family visit was marred by people’s opinions. Seeing family, especially a 93 year old great grandmother who wanted to see Jani & Bodhi, is an important thing. Both children should, like all children, be able to see those who love them at the holidays. You’re blessed to have family that are able to help with the travel expenses.

    I’m also sorry that this thread has wound it’s way to a discussion of donations, although that is how it started. People donate because they can, and care enough to. I don’t see any need for judgments here. Although I suppose a public forum is better than a private attack?

    Anyway. I saw the post and had to respond. It struck a chord. I’m also struggling financially, as are so many, and have had people question me when they see I buy a new pair of (needed) shoes.

    Hoping you have a good end of the week.

    Beth

  65. Come On, Kelly
    Kelly,

    You’re giving Michael a bad time because he took the family to see the 93 year old grandma on Thanksgiving?

    Kelly, trust me on this, you really don’t have to worry that the Schofields are ever going to be out jet setting. Really. Families like mine, his and all parents who have children with mental illness, are not often to be found at the Louvre in Paris, or even Disneyland. Parents of disabled children = Parents who cannot have outside jobs = Parents who are almost always low-income. My husband and I hold college degrees and we can’t work outside the home because it takes both our efforts to keep our son safe and cared for. Believe me–“travel”–as you called it, for folks like us is no vacation, but an extreme hardship. It is difficult enough for us to maintain in our own environments; once our children are hundreds, or thousands of miles from home, the job just gets 20 times more complex.

    I’ve explained before that my child DID try to jump off a balcony; he did this while we were away from home. Nope–we weren’t vacationing. This was back in the day when we were still entertaining the idea that my husband could work outside the home and he had to travel, and we were on a rare visit to see him.

    Honest Kelly, folks like us really don’t “travel” much at all. Most of us are like Michael, trying to figure out how to pay for groceries. You won’t find us in Europe, probably not even at a nearby amusement park. We just don’t have the money.

    Michael explained he had to beg the cash to get them home. Kelly, that’s not what I could describe as “travel.” “Travel” gives me visions of families relaxing in Hawaii, or flying to Europe. That is what the people we know do when they “travel.”

    Trust me, and I know this by experience, the Schofields and 99% of families like his, mine, know NOTHING about “travel.” :(:(

  66. Come on you guys, stop enabling this circus! This goes for your cheerleaders too!
    Reading through the blog and watching the youtube videos, I feel you guys are kind of enabling her bad behavior and in a way living through her. I mean I’ve heard of stage moms for child actors/models but this is more in an infamous way. I mean you give into this little girl when she has temper tantrums, like throwing the french fries or vase and your wife decides to take her to the ER? Yes she is psychotic but that’s no excuse to let her be a brat. You guys are being ineffective passive-aggressive parents. It’d be interesting for you to try to get on that nanny show to let someone who could be a role model show you how its done.

    Also since your unemployed, even if you put her in a facility, you could move closer to it and try to get jobs there.

    Note from Michael: Luther, check your facts. Who said I am unemployed? I am still very much employed. I just came off a semester of teaching three classes. If I was unemployed it would be by choice because Jani’s needs are so great. Maybe because I don’t make enough to pay for two separate apartments gave you the idea I was unemployed but I can assure you I am not. If not for the second apartment, we would be fine.

    The rest of your comments are just inane. Why would anyone want to “live through” the life of a child whose every waking moment is a titanic struggle to function in our world. How do you tell the difference between psychosis and being a “brat?” You said she is definitely psychotic, so how do you tell the difference. On medication she is an angel. We don’t let her get away with antisocial behavior but we don’t yell and scream and drag her out of a place. You don’t respond to psychosis with violence or even a stern word, because it makes it worse.

    Nobody is enabling anything. Jani is who she is. You don’t have to like it, but your opinion means squat to me. And no I don’t believe for a moment you were going to make a donation, unless it was your two cents 🙂 You made it. Have a good day. People like you just waste my time.

  67. BTW I would consider donating, but you blew off my other post and email and you didn’t even post it. You’re lucky people have been helping you but you should be more appreciative to others who’ve come to listen. Karma can be a biotch.

    Note from Michael: What post? I don’t delete any posts. Are you referring to the one that you submitted three minutes before this one? Oh I am so sorry that I didn’t drop everything and answer your post. I do have a family to take care of. Despite what you may think, I don’t have time to sit around all day waiting to approve comments. I only come on to check every few days. I don’t believe you would actually donate but if you choose not to because of your own narcissistic need to see your comments approved in minutes is your problem. I have bigger things to do than deal with people like you.

  68. Oppositional Defiant Disorder
    The [url=http://www.disorderscentral.com/odd-in-children.html]Oppositional Defiant Disorder[/url] is a type of disruptive behavior problem in children. The children show a consistent pattern of refusing to follow commands or requests by adults. Some important tips to to handle the ODD deficient child is to setup some schedule for them so as to keep them busy in all their interesting things so that that they should not get bored or stuck. Try avoiding conflicts so that they may not get Hyper and also try to divert their mind from negative approach.

  69. In my family I noticed we had a lot more in our bank account when we eliminated eating out at fast food places like McDonalds or Western Bagel, esp when you have to buy 2 more items because the first & second ones were thrown on the floor.. 🙂

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