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Got to Believe It's Getting Better (Doing the Best I Can)

As I write this, it is 10:50pm August 7th, 2010. Eight years, two hours, and six minutes ago, Jani came into the world. Tomorrow is her eighth birthday.

 

We have made it eight years overall, five since Jani became anti-social and preferred the company of what we then thought were her imaginary friends, three years since Jani became violent and her first hospitalization, two years since her diagnosis and the eight hospitalizations of 2009, and one year since we divided the kids into two apartments with Susan and I alternating nights.

 

Right now, rent remains unpaid on Jani’s apartment (I managed to pay Bodhi’s). Thankfully, the eviction process in LA County takes some time, so we are not under immediate threat yet. We will not be evicted before September 20th, at which point I can withdraw my 457 retirement account which I accrued my first year teaching at CSUN.

 

Rent for both apartments monthly is 2600 dollars. Right now I make $900 a month after taxes and contributions to health/dental insurance/retirement from the two classes I taught last spring. On top of that, I am receiving $1800 a month in unemployment (which legally I can take since I was not offered a class over the summer). Susan lost her unemployment for a few weeks when her final extension ran out. Then Congress extended unemployment benefits, giving Susan an additional $300 a week until the $1600 allowable balance runs out, although we didn’t have that in July, so I won’t count it. Finally, Jani gets $200 a month SSI disability. Total income for the month of July was $2900, which theoretically would give us $300 left over after paying rent, assuming that we didn’t spend anything through July, which of course we did. On top of rent, add about $200 in utilities, $200 for Sprint’s Everything phone plan (since Susan and I are rarely together cell phone is how our family functions over distance), $184 for car insurance (thankfully, both our cars are paid off), $100 a month to ICPS, the company that handles Jani’s blood draws and Clozapine refills at the pharmacy, $180 to AT&T for U-Verse internet/TV combo for two apartments ($90 each), and $480 a month for Bodhi’s preschool at Kindercare (he goes three mornings a week), and approximately $500 for food and gas.

 

As you can see, there is a serious gap between income/expenses. I feel like Lady Madonna in the Beatles’ song: “Lady Madonna, children at your feet, wonder how you manage to make ends meet.”

 

Not very well, John.

 

This fall I am scheduled to teach three classes, which will increase my income by $600 starting in October (the first pay period for the new academic year). However, the unemployment of $1800 disappears because now I am working again. Net loss of $1200. I don’t expect Congress to keep extending unemployment benefits (how can they?) and besides it is not like Susan can really work anyway-at least one of us always has to be with Jani because so far she has not managed to be able to go to school for more than an hour.

 

Bodhi’s speech and developmental delays means he will receive free preschool starting in January, but that’s January, not now. And he needs preschool. He does well there and we don’t want to pull him simply because we can’t afford it. How silly.

 

Moving is not an option. Forgetting for a moment that moving is a major life change and Jani is struggling over the minor life changes that resulted from the end of her three times a week occupational therapy during summer school and that putting Jani through a move when she is still pretty fragile, although getting stronger, could potentially undo all the progress she has made in the last year, it would mean moving Jani out of the Newhall School District, and we need to stay inside the Newhall School District. Despite some of our early struggles, which was really just all of us, including the school district, trying to figure out how to deal with a situation that none of us had any experience with, the school district has learned, just like we have, and they have and continue to do whatever they have to do to help us keep Jani out of residential. Newhall hasn’t always gotten it right, but they keep trying and we now have a very good relationship with them. The whole district knows Jani and sincerely cares about her well-being. But we all got to this place because they got to see Jani descend into her illness. It was the school district that had to call the police in January of 2009 because Jani was trying to throw herself through doors and windows. Once you see severe mental illness, you can either run or you can step up to the plate, and slowly but surely Newhall has stepped up to the plate. They have never pushed residential on us, although it remains their official recommendation via her IEP. Despite this, they never washed their hands of Jani when we said no, even though I confess that in the heat of the moment (as some of my older blogs will attest) we washed our hands of them. Everybody in the District knows Jani, knows her story, knows her struggles, but they also know the joys of Jani. They have seen the good and the bad. And they continue to claim ownership of her, despite the cost to the district and the burden upon teachers and staff. They are willing to do what it takes, even if they have to bend the rules to do it, even if they have to work a little harder. I am very grateful to them. They are a fine group of people. In way, they are part of her family. We are her immediate family; UCLA is her second family, and the Newhall School District is her third family. And like all families, we disagree and sometimes fight. But we all respect each other.

 

Jani is entering third grade. In three more years, she will no longer be eligible for Newhall and will pass into the hands of the Hart Union High School District, which has far fewer options. In three years, I will have to begin the process all over again with Hart. And I will, even though I hope that the Jani Foundation will be able to found its first day school for mentally ill/autistic kids by then. I will have to start all over again with Hart, fighting with them just as I fought with Newhall, even if Jani isn’t in Hart. I have to because I have to do it for the other mentally ill kids within Hart, kids who right now end up in Hart’s “continuation school,” which looks an awful lot like a very nice prison.  In a sense, Jani will have it easier because she has been diagnosed. I know I have taken shots from fringe elements about “labeling” Jani, but they don’t get it. I can understand an adult being afraid of the stigma of the label of mental illness, but for a child inside the public school system, it can save them. Once a child is diagnosed, they cannot be punished for what they cannot control. They are ill, not brats or “bad kids.” Unfortunately, our culture likes to demonize teenagers anyway, so I fear that a lot of mentally ill teenagers get thrown away by their school districts. I have to fight Hart because Hart wouldn’t throw away a physically handicapped teen, yet they still throw away their mentally ill students, not realizing the gifts that these teens have to offer society if we will only offer them our support and commitment. You give me an appropriate diagnosis, appropriate and moderated medication(s), and therapy offered by sincere and caring professionals and teachers who see the value in every human being no matter how they sometimes act, and I will empty every continuation high school in America and I am going to start with Hart.

 

Funny how I moved from talking about money to this. I think I needed to remind myself that money, although very helpful, isn’t the most important ingredient to improving the quality of life of mentally ill children and teens: it’s effort and the commitment to make that effort no matter what the cost to you personally.

 

And the end of the day, as long they know you care, as long as they know you won’t walk away when things get hairy, as long as they know you can distinguish between their illness and them, there is always hope.

 

So what have I learned after eight years?

 

Some of it is hard.

 

I have learned that Jani has an illness that will always be a part of her, much like someone with type one diabetes will always have diabetes. My friend John is a type one diabetic and he will have to shoot insulin for the rest of his life, simply because his body doesn’t produce it naturally. Jani will have to take some medication and monitor her schizophrenia for the rest of her life, simply because her mind doesn’t quite work right. It is a biological defect, but one of the best things about our society is that we are progressive and we continue to strive to appeal to the “better angels of our nature” as Abraham Lincoln put it. What I love about America is that we keep trying to get it right, to live up to our Bill of Rights, to do a better job, to be better people, even though we often fall short. It took us a long time to accept that those with biological defects that manifested physically were still complete human beings, that a defect does not define a person. I don’t mean “defect” in a derogatory sense. We are all, in some way, “defective.” Life itself is defective, but it adapts to those defects and perseveres. Those with mental illness are fighting what is essentially a civil rights battle, just as gays, those with physical disabilities, minorities, and women fought before them (and continue to fight).

 

Like Dr. Martin Luther King, I have a dream as well. My dream is that one day mentally ill children, teenagers, and adults will be as much an accepted part of our society as anyone else. Instead of marginalizing them or attributing their behaviors to moral failings, we will embrace them. We will help them through their crises with love and patience. We will understand that a psychotic episode is no different really from getting the flu. Who they are is still there. We just have to help them get past this rough patch.

 

And sometimes this just means holding their hand until they come out of it. Yes, I know you see things that I can’t see, that are as real to you as you are to me, but I am real, too. I am here. Feel my hand. Know that where-ever your illness takes you, I am there and I will be there when you come out.

 

The second thing I have learned is that I am not as strong as Jani’s mental illness. I can never defeat it outright. As one of my blog readers said about his own schizophrenia, it is about negotiation. I have to negotiate with the schizophrenia. I acknowledge that it is not going anywhere, but neither am I. Stalemates don’t work so I have to keep negotiating with it, talking to it, initiating discussions with it. As my reader also said, it isn’t really trying to “kill” Jani, although it is capable of it. It is just trying to make sense of things. Or it wants to play and doesn’t understand that its “fun” can hurt the life and well-being of the person with whom it shares a brain. Schizophrenia literally means “split mind” in Greek. Although this causes laypeople to confuse it with Multiple Personality Disorder (now disassociative identity disorder), the name is actually appropriate. Those with schizophrenia have to share every thought, every feeling, with their hallucinations, and in turn their hallucinations share their thoughts and feelings. It is like two people sharing the same brain, but they are not distinct personalities. Instead, thoughts enter your head constantly that you don’t actually “think.” Voices other than your own tell you to do things. You can try to ignore them (and many adults with schizophrenia do learn to do this) but it is harder for a child. People can and do lead very successful lives despite having schizophrenia, but it takes more effort than us neurotypicals will ever know.

 

The other day, we went to see our first movie as an entire family. It was also the first movie that Jani managed to make it all the way through. She wanted to leave about 40 minutes in but we managed to convince her to wait, telling her it was almost over, and then it was. The film was Cats & Dogs: The Revenge of Kitty Galore … in 3D. It was my first 3D film since I was a kid and 3D has come a long way since then. In the Eighties, 3D was just a red/blue blur oozing from the screen. Unlike 3D thirty years ago, this 3D doesn’t come out of the screen, which is what I had been expecting. It makes objects just appear in the space above your head or in front of your eyes. Objects move from empty space into the screen and not the other way around. Honestly, it freaked me out a bit. Jani put the glasses on and then took them off, preferring to watch without them, which leaves the screen slightly blurry. I asked her, “Jani, is this what you see everyday?”

 

“Yes.”

 

I realize it was a leading question, as they would say in the legal profession. It’s not like Jani put on the glasses and went “Wow! This is what I see.” But then again, how would she know? Her every waking moment is like a 3D film with objects appearing above her head. Why would a film experience that replicates that stand out for her?

 

I am always trying to understand what Jani is experiencing so I hope it was somewhat close. I found it extremely hard to ignore the objects that would appear. Every time, they would draw my attention away from the screen. My head started to hurt and my eyes strained under the effort of having to watch two simultaneous things: the film on the screen (which would represent reality) and the 3D image (the hallucination).

 

Third, I have learned that there are aspects of our world Jani simply cannot deal with, and that when she gets scared or nervous, she runs back to Calalini. More than a year since diagnosis, we have learned that in some ways Jani’s world and ours can coexist. We have learned how to avoid conflict between the two that would send Jani back to the hospital. Unfortunately, this means suppressing any negative emotions. I can’t ever get angry or even mildly frustrated, because it produces uncertainty in Jani and she cannot deal with uncertainty. In order to survive, she strictly structures her world. I am not talking about getting angry with her. I am talking about getting angry or frustrated about anything. I don’t know if this is true of every mentally ill person, but the ones I have met, including Jani, are, when not in a psychotic state, EXTREMELY sensitive to the emotional states of others. It is like they are emotional bloodhounds. Maybe this is a defense mechanism that they develop over time in order to know who they can trust to melt down in front of (because every schizophrenic I have known is able to “hold it together” with some people but then fall apart with others). This is because they know that their safety depends upon knowing who they can trust. This is why many mentally ill kids (although not Jani) seem to do great at school and then flip out at home, leading teachers and therapists to conclude the source of the violence must be something “in the home.” It isn’t because they are “better” at school. They are still struggling there as well, but they know they have to hold it together there. But at home, they are safe. They can let go, give up the fight they have been fighting all day, and rage away knowing that at least their parents or caregivers are used to it and any violence or destructive behavior won’t fundamentally alter the relationship between parent and child.

 

Which brings me to my fourth lesson: The illness cannot alter the relationship between you and your child, which is extremely hard when you have more than one child. Today, at McDonald’s, Jani saw Bodhi pick up her Happy Meal toy. He was just curious. Jani yelled “Hey! That’s mine!” Susan quickly took the toy away, robbing Bodhi of the change to tactilely experience his world. However, she did it to prevent Jani from escalating. We told Jani it was okay now, but it wasn’t for her. She took two of his Hot Wheels cars, including one he had just earned for doing a poopy in the potty, and threw them in the trash. I made an attempt to go in after them but could only take so much rooting through ketchup and milk before I had to withdraw my hand. We never recovered Bodhi’s cars.

 

I was very upset with Jani, just as I was a few days earlier when, while changing the water of the two Betta fish her therapist got to engage Jani, she spilled water on herself. She ripped off her shirt and tried to leave. Her therapist couldn’t let her leave topless. Jani, frustrated, but with no way to express it appropriately, took the live plants in the fish bowls and tore them up. Now the Bettas have nowhere to hide (I can’t afford even the couple of bucks for new plants right now) and are very nervous.

 

I was upset with Jani because in both cases she hurt others. I don’t care if she hits me but I hate it when she does something to hurt another life that is defenseless and didn’t do anything to deserve her wrath.

 

So I got angry with Jani. I didn’t yell or anything, but it was clear that I disapproved. All this did was make Jani feel guilty, which made her want to get away from everybody. Guilt is fine as long as it motivates change, but for severely mentally ill guilt is a useless emotion because no matter how guilty they feel it won’t prevent them from doing it again. See, Jani can learn, but unlike “neurotypicals,” it is a much bigger struggle to apply what is learned to alter behavior, because for her the compulsions come before she even realizes what is happening. When she spilled water on herself or when Bodhi touched her toy, all the knowledge of what was right and wrong wouldn’t help her because right and wrong are logical ideas and in a psychotic state Jani isn’t logical. She cannot slow her mind down enough to process through the consequences.

 

But tonight I realized something. Yes, she threw away Bodhi’s cars… but she didn’t hit him. She didn’t even try to.

 

Yes, she tore up the fish’s plants, but didn’t hurt the fish.

 

Could it be that she is slowly learning a form of control of her violent psychotic rages, to direct them at an inanimate object instead of at a living thing? Perhaps destroying something of value to the person her psychosis is upset with placates the psychosis but also allows Jani to keep from hurting others in a physical manner.

 

As hard as life still is, as much as I miss spending time with my wife (we haven’t been intimate since Jani was last in the hospital six weeks ago- no big deal but we could conceivably go months if Jani remains out of the hospital), as much as I can’t even talk to Susan without Jani trying to get my attention, as much as I am disappointed because last month things were going so well I actually wondered if we could maybe live together again under one roof and in the last week I have seen that Jani is still not ready to live with Bodhi, as much as I cannot pay for two apartments but I am not going to send Jani to residential just because I don’t have the money (I will literally beg on the streets before that happens-yes, this hurts my pride to have to beg for money when I have an MA and teach college but screw my pride-I am trying to keep my family together), Jani is actually slowly, gradually, learning to live and function with her disease.

 

I just need to stop worrying about tomorrow and live in this moment. In this moment, on Jani’s eighth birthday, we are all still here, still a family.

 

But this is not just about us, not just about Jani. I still get emails from people offering assorted “cures” to Jani. What always bothers me about this is that the only reason they even know Jani exists is because of the LA Times or Oprah or 20/20 or Discovery Health. Jani existed long before she was on TV. I don’t dispute that these people are well-meaning, but none of them have ever offered help to the hundreds of other mentally ill kids we have come to know. It is just Jani and they act like if Jani is miraculously cured, then our world is alright again. No, it won’t be. Once you have loved someone with a mental illness, you can never go back, because now you know. You can never look at those raving on street corners to the thin air the same way again. Once you are in the parenthood of mental illness, you can never leave, because any child could be your child.

 

You learn that when your child is doing well, it is by Grace and that every step you take is somewhat shakey. You will never be on terra firma again. Once your child has had mental illness, you go to sea, never to return to the land you once knew.

 

Even if Jani was suddenly cured tomorrow, she would still have lived through what Mari, Logan, Brenna, Becca, Hannah, Annabelle, Teagan, Maddox, and countless others live through. Once you have been to the world that these kids live in, you are never quite the same. It is a brotherhood and sisterhood you never leave, cure or no cure.

 

These kids are survivors, just like cancer survivors, and like cancer survivors, they can be in remission, but they are never cured.

 

So tonight, on Jani’s eighth birthday, I dedicate this blog to the survivors, to all the children living with mental illness and their families who are still here.

 

Congratulations.

 

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25 comments on “Got to Believe It's Getting Better (Doing the Best I Can)

  1. This blog meant so much to me!!!! There is so much in here that I connect with. H is also extremely sensitive to the emotional state of others. An example is that if she is hitting me and I get agitated or frustrated at all she will get more violent and scream at me “Why are you not happy!!! You should be happy!!!” Having to not just try to hide the true emotion, but learn not to have it has been a terrible experience for me. If I have the emotion, it’s bad for her. But, not having it is bad for me. It makes me feel like I’m going numb to things which I don’t like.
    Also, she definitely can keep it together for small periods of time for others. But, I usually have her massive meltdown to look forward to as soon as we hit our car, or our house.
    And her behavior doesn’t improve at all with her guilt feelings. After an incident when she hits the remorse/guilt phase she just gets so down on herself that she doesn’t feel worthy to be here or live anymore. It does nothing to stop the next incident.
    But, the part I identify with the most is the brotherhood/sisterhood of these precious kiddos and their families. I’ve never met you in person and yet feel a real kinship with your family. That is amazing to me!!! We may never meet in person, but if nothing else we can be here for each other. In the land of cyberspace. Where at least we know we are never alone, others are going through the same thing.
    Thank you so much for your blog!!!!

    Note from Michael: Thank you, Annette. I am struggling to keep from going numb myself.

  2. Thank you!
    Michael,
    Thank you for another powerful blog entry and thank you for dedicating this entry to those of us who are struggling, daily, to do right by our mentally ill children. Kaz will turn 12 next month and we have made it this far. Day by day, hour by hour, and minute by minute, I try to count the successes instead of dwelling on the challenges. It was 2 years ago, this week, that Kaz slit her wrists in a bipolar rage. Here we are, medications and therapies later, feeling like there are moments of clarity and peace in her life. I wish those moments for Jani and all of you, as well. Please know how much we care about you all and support the Jani Foundation and its efforts to help our children.
    Heather

  3. Interesting….Tim has also moved on from trying to lash out at others to objects, but mostly, he runs. He’s an avoider. I hate this, because he can go for miles, but I suppose it is a better option than assault (which, at 16 years old, 6 feet tall, and 160 lbs, that’s what it would legally be).

    A very happy birthday to Jani and to all of you!

    Note from Michael: Chrisa, great to have you back.

  4. Jani
    Wonderful blog. Your best. Great to hear Jani is getting a handle on her illness. That eviction talk worries me though; Jani’s balanced on such a delicate fulcrum. She seems to be doing well now, but God knows what any disruption in her routine might do to her.

  5. lesson 2 and 4…very insightful. it’s makes me happy (from the bottom of my heart) that you think maybe jani is starting to learn how to channel her frustration/compulsion towards more acceptable sources. that cannot be an easy task, even for a person who doesn’t struggle with distorted perceptions and cognition. it sounds like a big step forward because really, there’s only so much that the neuroleptics can do. and those alone certainly can’t keep her out of the hospital. but hopefully her strengthening internal coping mechanism (along with you and susan, plus her wonderful support network) can help her steer clear of hospitalizations for longer and longer periods of time.

    lesson 3…i myself am extremely sensitive to other ppl’s emotional state too. i can pick up very subtle facial expressions and while that can be good for being empathic towards others, it also places me on a mental roller coaster b/c i react to all the changes i perceive, and especially so to the negative ones. i’ve been able to “hold it together” as well, sometimes even during my hospital stays because i don’t trust the people working there. then they throw it back at me and say i’m being manipulative because i act differently around different people. maybe if they’d just taken the time to ask, they’d know the real reason why. it’s good that you’re picking up on how sensitive jani is too, and trying to be more careful in how you act around her. she needs you to do that so she can trust you and feel like she can be herself around you, with or without her hallucinations. the last thing you want is for her to turn her anger/frustrations towards herself because she’s worried about how you or susan would react.

    anyway, keep marching on, michael. i have nothing but admiration and appreciation for you and the work that you do for your dream, which happens to be my dream too…

  6. Micheal, you have gotten my throat to grow a lump with this. What you have said here means so much to me – to all of us. You may not understand what it is like to live through this; but there are certain things you do get. The reasons we are better at school, how hard it is to ignore, and just how hard this fight is. Thank you for validating that. Far too often, we are looked at as weak for our behaviors and actions, when just getting to that point is exhausting. Like Jani, I target everything else first: the objects, chairs, and unfortunately, myself sometimes. More than anything I don’t want to hurt anybody. Attacking those non-breathing objects is like a trade off or negotiation with them, and it takes so much effort to make it. I understand why they still anger and worry; but sometimes, I just wish they would acknowledge that struggle. The fact you did will not be forgotten.

    Thank you.

    With Love;
    Eri

    Note from Michael: Thank you, Eri, for sharing your story and doing what you do to keep showing the world that the mentally ill have wonderful gifts and are beautiful people.

  7. ken from youtube – notes from an insider
    Michael: “… Instead of marginalizing them or attributing their behaviors to moral failings, we will embrace them. We will help them through their crises with love and patience. We will understand that a psychotic episode is no different really from getting the flu. Who they are is still there. We just have to help them get past this rough patch.”

    Hi ken here. That’s a good point- I went through the same thing, wondering what it means, how such a disorder could exist. I finally came up with a biological description of what the Voices are, and told my psychiatrist. He thought about it for a minute, and then said that’s good can I use it? LOL I said of course, please use anything you find useful. Anyway, here’s what I said to him:

    It’s like I have a broken roof at the top of my brain, a “broken brain roof” that leaks rain (thoughts) down on me, getting me wet (focused on them) whether I want to or not, because I can’t get away from them. Add visual forms to the Voices talking to you and Jani’s problem becomes clearer.

    Now the issue is the absolute certainty that the Voices are not coming from you. They are so clear and clearly coming from somewhere else other then you. I can be quieted and calmly just watching my breath (tai chi) and there it is, as clear as day, and making real thoughts with subjects and predicates, about the things around me or in me (thoughts, feelings, experiences). And further evidence is: if I was just “playing with imagination somehow”, would I let it ruin my beautiful life in Hawaii, never to return? Of course not.

    So the Voices are independent of “me”. It’s like the brain pipes in the ceiling have holes and are “leaking” external thoughts down on me. That’s what makes them so strange and easy to personify into cats, rats, spirits, “the man”, gods, demons, angels, aliens etc. But biologically it’s just broken brain pipes raining down:
    1. external thoughts that
    2. flow where you don’t want to go/be, (morbid, haunting, disturbing) and which
    3. have a negative impact on your life.

    But you’re absolutely right, there is a separate Jani in there with her own thoughts and feelings, banging up against the Voices, which I think is what she is saying to herself when she rubs her hands fast: “Forms with Voices contacting me!” You can also see her make little biting movements afterwards, which I think is the same “biting” feeling I get when I’m trying to pull my attention away, and which can become biting my arm if I get too “pissy” with it.

    She is the person inside who said she wants to be a “number checker” which means “draws number’s blood to make them feel better.” So I believe there is a sweet girl in there, who is being tossed around in a storm of Voices in Forms. And they are “tricksters” who seem to always go to the wrong thought (maybe that’s where our pipes are broken) and this puts you on edge, breaking your own thoughts to “attend’ to them and debate and negotiate with them and their jokes. This will bring out the worst or the best in a person, and Jani is young, bright, aware, and just learning how to “get along” with the hallucinations. I think she will improve on this with age. Just coping daily without going through any breakdowns or meltdowns is a big Victory I think.

    I’ve gotten to the point where if I start talking out loud saying “Shut up!” “Leave me alone,” etc. then I know I have reached the end, from whence it will only get worse. So I immediately go into “get along mode” and go take a walk or try to watch TV until I calm down. The morbid, haunting, and disturbing Tricks are the worst, and I am hyper-alert about looking out for these “tricks” (lashing out, harsh self-criticism hurting self, etc.) and immediately identifying them: “Nasty Trick! We both know that’s just a trick.” Then I immediately go into “get along mode” and try to stay calm. Seems to work for me as I never let it go beyond talking out loud to it now. Took a lot of practice though.

    Hope that helps, or you can find some food for thought in there.

    Have a good day, Ken

  8. Here’s to you…
    Hi Michael,
    I have been following the story of Jani and your family for about 6 months. I just want to say, keep your head held high. People should be throwing money at your feet in admiration for your passion and devotion to Jani and mental illness. After months of reading, I finally felt so strongly moved to donate that I did so right away (I’m not sure when it will clear, though). The amount is hardly substantial, but as a grad student (mental/behavioral health social work) struggling with loans, I can relate to knowing that every bit of support helps. I am a devoted reader, and when I have the means to offer further support, I will.
    Thank you for shedding such a bright light on those individuals who deserve so much more than we as a society are currently providing. I hope that someday soon your compassion will stir others into action.
    Happy birthday, dear Jani! 8 is a magical age, may it be so for you, as well.

  9. Dear Micheal, my heart, prayers, go out to you and your
    family. I hope your daughter had a wonderful birthday.
    This site in particular has given me insight, and a bit of
    understanding to the suffering and complexities of illneses such
    as schizophrenia. Myself as a teen now, and child a few years
    back, I almost feel i have no right to comment on such a mature
    topic, but i find myself connected with your struggles. Instead
    of being a parent of a child with schizophrenia, im the daughter
    of a mother with said illness. Growing up, i can relate to the
    emotions you feel. Even if im not the parent, and its my mom
    trying to keep a roof over MY head, im still fighting a mighty.battle
    to keep things together and fighting her delusions… but anyway, i just wanted to thank you
    for sharing everything that you have because it helped me
    to understand, and now that im older, perhaps approach
    this struggle diffrently. Thank You. PS: (I aplogize for any typos or errors in
    this post).

  10. I am watching Born with Schizophrenia right now, and it hit me i haven’t read your blog in a while. I’m glad I did today. HAPPY BIRTHDAY JANI! i hope it was a great day for you and your family

  11. Thank you
    After watching the special on Discovery health, I feel compelled to express my feelings with you. Thank you! I am so pleased to see that after all your family has been through, you continue to do whatever it takes to give Jani the best life she could have.
    There are so many parents in this day in age that just seem to give up on their children for whatever reason strikes them. Its refreshing to see parents with such love and conviction for their children. Thank you Michael and Susan, and I mean that from the bottom of my heart.

  12. about Eri’s Post
    Hi, I just wanted to tell Eri that her post really made me think. You’re a good writer; I’ve read your other posts and blog. I thought this was very important:

    Eri: “… Far too often, we are looked at as weak for our behaviors and actions, when just getting to that point is exhausting. Like Jani, I target everything else first: the objects, chairs, and unfortunately, myself sometimes. More than anything I don’t want to hurt anybody. Attacking those non-breathing objects is like a trade off or negotiation with them, and it takes so much effort to make it.”

    I really think you are heading in the right direction with this! That’s a really great idea to quickly identify and debate to least harm/ no harm. For me all this is just nasty tricks trying to trick me and that’s how I handle them (see above). The fact you are doing this shows there’s a mature girl inside, and you will get better at “getting along” with the symptoms, without losing yourself.

    And like you, I agree that just coping with the symptoms, without any breakdowns or meltdowns is a big Victory.

    Keep up the great work and great writing!

    Wishing you well!
    ken

  13. Jani
    I’ve commented on your blog before but I will tell a little about myself again. My name is Jan and I also have a mental illness. I’ve have ADHD, ODD, anxiety disorder, and depression. I inherited the depression from my mom’s family, and all of the others from my dad’s family. I have two brothers. One is ADHD, and the doctors predicted that he would have down syndrome, while he was still in my mother’s womb. Fortunately, he did not have down syndrome but he does have learning problems and he is very socially immature for his age. He just doesn’t understand how to act around others. My other brothers is so severely ADHD that the doctors diagnosed him when was 3 years old. He started taking medicine at 3 too. He was started on a very low dose, because he was only 3 years old. My family went through tons of medicine changes with him, because nothing was working. Some even made him worse. We’ve got him on Vyvanse now which is working pretty well, but I have a fear that there could be another underlying mental illness. So basically we are a pretty abnormal family. It isn’t fun, it isn’t always happy, but we love each other. I have to commend my parents because most people would have left us by now, but they didn’t. Thank God, you and your wife haven’t given up on Jani. I’m a teenager, and Jani is almost 8 years younger than me, but I look up to her. I can relate to her, because we both are fighting againist the statistics, fighting agianist our brains, fighting just to get out. Behind Calalini, behind 400, behind all of the residents of Calalini, there is Jani, and just Jani. Jani is still fighting to get out of Calalini, fighting for someone to hear her voice, but it’s silenced by Calalini. Thank God, that you and your wife are willing to do whatever takes so that in those rare moments when Calalini is silent, Jani can speak. Jani can just be Jani.

    I can only imagine what it’s like to be the “worst case” doctors have ever seen. I can only imagine what it’s like to know that Jani may never get better, but there is a positive side. There was always that person that was “the worst case” doctors have ever seen. Always that person who finally made people notice, and finally made people pay attention. Jani’s schizophrenia isn’t something you see everyday, in fact I don’t think most people ever see it in their lives. In a way, Jani’s schizophrenia demands attention. It’s a curse because it means it’s so bad that it makes people notice, and it’s a blessing because it means it’s so bad that it makes people notice. At least people are noticing. There are other kids who have come before Jani, who had schizophrenia. Some mild, and some severe. There will be kids who come after Jani. And maybe just maybe, Jani’s case demands enough attention, that someone out there feels lead to do something. And after years of research, they find a medicine that is extremely effective in fighting child onset schizophrenia, or they even find a cure. And maybe, Bodhi will get married one day and have kids, and then his great-great grandchild has child onset schizophrenia. And Bodhi’s great great grandchild has hope, because sometime in the past, Jani’s condition was so bad, that someone finally paid attention, and found a cure, or a successful medicine. With bipolar, there was somebody, somebody who was so bad off, that people finally paid attention. They weren’t necessarily the first person to get bipolar disorder, but there bipolar was so bad, that people finally started to realize that bipolar is real and bipolar happens. Same thing with ADHD, or autism. It’s just a dream of mine, but I plan on fighting until every child like Jani, every child like my brother, every child like myself has hope. Hope that they can be successful, hope that they can finally fight their mental illness and not lose. My own mental illness has inspired me to do that. I can’t just sit around and read your blog, and think about how much I wish Jani could be cured, and how much I sympathize with her, because thats a waste of my time. What I can do, is raise awareness for every mental illness, and be there to help, be there for research, be there to keep children like me out of instituions. I know if I don’t do it, then no one will.

    I have two questions for you.

    I read about Jani’s story on the home page and read about Jani as a baby. You talked about her needing constant stimulation and constantly being awake. Do you think Jani saw her hallucinations ever since she was a baby? Or did they gradually appear as she got older?

    My second question is

    What can I do to help Jani’s cause?

    Note from Michael: I love your line “It isn’t always fun, it isn’t always happy, but we love each other.” That sums up this life beautifully.

    To answer your first question, yes I think Jani always saw hallucinations. I think she even saw things in the womb and that is why she was so active. To answer your second question, you can help by sharing your story like you have in this comment. Start a blog of your own and I will link it to my website if you want me to. People need to hear that there are more kids like Jani out there. You are a very good writer and telling your story, humanizing mental illness for the general public, is a huge benefit to our cause.

  14. My heart goes out to you
    Michael and Susan, I watched your special on Discovery Health and was so thakful you shared your story. I am a student in child psychology and have never heard of or read a true case of child-onset schizophrenia. Jani’s case is so fascinating. I give you both so much credit for being the amazing and flexible parents that you both are, particularly when Jani’s behavior seems to have started off so terrifying. I hope you both have your own supports in place and I wish you all the best for Jani’s future. She is clearly a brilliant and fascinating child and I know that with the right supports, there is hope for Jani to have a bright future.
    Many blessings,
    Leah

    Note from Michael: I think Jani does have a bright future. Her schizophrenia will always be a struggle for her but things are slowly getting better. She is learning to live with it. And so are we.

  15. Happy B-day to Jani and thanks for the sentiment. My son will turn 15 at the end of this month. I was in the parents’ group, but had to leave a month or so ago.I think I needed a online support group and was overwhelmed by the urge there to shift to local community. Things are too fraught here and that would be added stress and pressure for me, BUT I applaud your vision and I think it is helpful for others who are in a different place than our family. We are all different and yet we are able to emphathize because all of us are adjusting to the demands of mental illness or autism. I hope that all of us achieve clarity and hope. Thanks for your blog….

    Note from Michael: Yes, I was wondering what had happened. I am glad you are okay. Thanks for letting me know.

  16. I’m wondering if either you or Susan would qualify for California’s Paid Family Leave Program. http://www.edd.ca.gov/default.htm

    What constitutes a serious health condition for the purposes of Paid Family Leave?
    A serious health condition means an illness, injury, impairment, or physical or mental condition of a patient that involves inpatient care in a hospital, hospice, or residential medical care facility. This includes any period of incapacity (e.g., inability to work, attend school, or perform other regular daily activities) or any subsequent treatment in connection with such inpatient care; or continuing treatment by a physician or practitioner. Unless complications arise, cosmetic treatments, the common cold, influenza, earaches, upset stomach, minor ulcers, and headaches other than migraine, are examples of conditions that do not meet the definition of a serious health condition for purposes of Paid Family Leave.
    Eligibility
    Who is covered by Paid Family Leave?
    Employees covered by State Disability Insurance are also covered by Paid Family Leave insurance. If a Voluntary Plan insurer provides a company’s disability insurance coverage in lieu of State Disability Insurance, then it must also provide Paid Family Leave insurance coverage.

    Note from Michael: Thanks but I took Paid Family Leave last fall from my job. Unfortunately, PFL is intended only to be temporary and Jani’s needs are not temporary. Thank you, though, for the suggestion.

  17. Jani
    Hi Michael, I am so moved by your story. Thank you for having the strength to be such a wonderful dad to such a special little girl.

    I have read in several of your blogs about the water and Jani ripping her shirt off. Maybe it is time to start carrying a spare outfit where ever you go. I know that seems like a burdon, but I do so when ever I have my neices or nephews because they are the same in that respect. It is just easier not to fight it..lol. I am sorry about your financial situation and I wish I had something I could donate. Hang in there and take care.

  18. I first learned about Jani the way that many people did – through the Discovery Health special “Born Schizophrenic.” Prior to watching this I had only a very vague understanding of the illness. Since then I have become fascinated with the subject and Jani’s story specifically. It has given me a new appreciation of mental illness and the struggles of those affected by it. I think it is admirable that you both have devoted your lives so completely to providing Jani as much normalcy as possible and a foundation with which to stay grounded. Jani is a very special child and I hope that someday all of you will have many more moments of peace. I also hope that Jani’s story continues to be an inspiration for everyone touched by it the way it has touched me.

  19. I have been reading your blog for some time now after I watched Janeys documentary. I’m so sorry for all that you guys have been through. That is some life you guys are surviving and I give you major props. At the beginning of this post you were naming off all these expences that your family has and how you have not made rent yet. I am curious as to why you are paying for all of these extras (ie, cable, Internet, everything phone lines) when you could save money by keeping it at the bare minimum. I mean do you really need an everything phone line if you have Internet at home. I don’t know this is just my opinion. And if you are expecting to be evicted why not make a move now to a cheaper place(s) and start saving money. I’m sorry if this offends you as it is really none of my business. But you did post it for the world to see. I wish you and your family all the luck in the world.

    Note from Michael: No, it doesn’t offend me. We don’t have a phone line, only cell, which is really the only way Susan and I can communicate since we don’t live in the same apartment. As for moving to a cheaper place, I think I answered that. I don’t want to move Jani out of the school district she is in and start all over fighting with a new school district to get her the services she needs and a move is a major life-changing event and Jani doesn’t do well with even minor changes, so something like a move would surely push her into psychosis. What I have found in life is that there are rarely simple solutions to anything. Thanks for reading.

  20. Happy Belated Birthday
    Happy Belated Birthday to you, Jani!!! 🙂
    May this be your best year yet!

  21. Becca
    Does anyone know how Becca is getting along these days? She seemed like a rock that Jani could hang on to when the going got ruff.

    Note from Michael: Becca is doing very well. She was at Jani’s eighth birthday party. We don’t see her as often as we would like because they moved a little ways away, but she is still around.

  22. Shot in the dark…
    Oprah….I would think your connection to her (being the most powerful woman in the world) would help you financially. No? Doesn’t she pay her guests big bucks? And the other shows that Jani was on…didn’t they pay you?

    You should apply for Exteme Home Makeover: http://abc.go.com/shows/extreme-makeover-home-edition/apply

    Only set back might be that you are in an apartment and don’t own it. Just an idea….as you never know what may come of it.

    Miracles happen everyday ~ God bless your family

    Note from Michael: No, that is a myth that Oprah pays her guests. She does not. She never has. I don’t know where that story came from home. No, none of the shows that Jani was on ever paid us. All were journalistic shows and if we were paid then it would seem like we were doing this for money. Oprah does not pay her guests. Talk shows don’t pay guests. 20/20 is a news program and news programs never pay for stories because it takes away journalistic integrity. So I am glad you asked the question because I think perhaps a lot of people think we were paid for our appearances on these shows, but we were not, nor did we ask. No, we have never been paid by any of the media we have appeared on.

  23. Paul Wrote & Sang
    Paul was the one who wrote and sang “Lady Madonna,” not John.

    Note from Michael: You are indeed correct. It’s funny. I suppose I attributed it to John because it “sounds” more like one of his (more negative).

  24. Something I believe can help 🙂
    Hi,

    My name is Eva I am a mother of 6 and a RN. I have seen your story on several programs and I admire you for all you are doing for your daughter. I can’t imagine what you and your family go through on a daily basis. I did Psychatric nursing for about 6 years early in my career so I understand some of what your stuggling with, but with that i could go home.. you live with it day in and day out.. You really are amazing parents!

    The reason for my comment is I know of a product that has had an amazing life changing affect on a young man with schizophrenia. What caught my attention today while I was watching “born schizophrenic” was your last name Schofield, the same last name as the family who’s son is also schizophrinic here in missouri, and today is symtom free AND medication free. I felt like I had a moral obligation to share this with you. I have a dear friend who’s also had life changing results with her daughter who is bi-polar, and is now also medication free.

    The product is called Reliv, it is a nutritional supplement.. sounds so simple hu? Sounds almost crazy hu that something so simple can help something so complicated.. I know that’s what I though when they told me.. I was about to file for disability a year and a half ago when sometone shared with me.. today I am pain free, medication free and all because of a nutrition…It was so simple.. I wish someone had shared it with me years ago, I had been in pain for over 20 years..

    You all need to meet the family that has the son with schizophrenia I saw somewhere you had tried ” everything” but I am sure you have not tried this 🙂

    my email is happygirl__35@yahoo.com, please feel free to contact me any time

    Eva

    Note from Michael: Thank you for sharing. I have heard of Reliv. You are not the first person to suggest it. I appreciate the suggestion but I have my doubts, especially since it has never been tested as a treatment. I tend to be suspicious of over the counter treatments and “miracle cures,” especially when used as a replacement for rather than a supplement for medication. I would never advocate someone truly psychotic not being on medication because I think the risks of not taking medication outweigh the risks of the medication, at least in cases of severe psychosis like Jani has. But thank you anyway.