Author: mschofield@janifoundation.org

Safe and Sound (All Made With Lead)

I am writing this now because whenever I get back from where I am going, I don’t know that I will be able to.

 

There are a long line of things that when I was a younger man, I never thought would happen or never thought I would do. I had a very strong idea about who I was when I was ages 18-28. I swore I would never be a man who would shake his child, like I did once to Jani when she was just an infant. I’m not going to bother with the extenuating circumstances. I never thought I would be the man who would spank his child in anger, like I did to Jani when she was constantly violent and I was at the end my rope. Sorry. Extenuating circumstance. I can’t justify that. I never thought I would be the man who hit his wife in the heat of stress and anger. I despised those men and I became one of them. I did get help. Medication and therapy. Extenuating circumstances again, I know. This is not the first time I have admitted publicly to this but it is still hard.

 

I never thought my first child would go into a psychiatric facility. I never thought I would be accused (and later cleared) of sexual abuse. I never thought my daughter would be diagnosed with child onset schizophrenia. I never thought there would be anything wrong with Bodhi. I never thought he would have autism. I never thought I would have to hospitalize him. I never thought I would have to put my children on drugs that scare the shit out of me just to keep them safe.

 

Today, another event has come that I never thought I would agree to or would happen.

 

Bodhi is in the UCLA ER in four point restraints.

Photo: Bodhi

 

I never believed in restraints of the non-human kind. I have always believed it was better for me to get hurt, to take whatever physical pain I had to, that tie either of my children down.

 

But it has been taken out of my hands now.

 

Just like with Jani, it was Susan who had the courage to do what I could not do.

 

If you couldn’t guess from the last blog, “Turn and Burn,” UCLA released Bodhi last week. Sure, he was doing great on 10mg per day of Abilify in the hospital unit, no PRNs. But the hospital unit is not the real world. Kids generally do better there because all the stressors of life are gone. It is insulated. We were willing to take him home but we wanted to make sure he could function off the unit. We wanted them to try to take him to school there (UCLA has it’s own school, just outside the unit) as well as even just onto the “deck,” an area outside on the fourth floor that is protected by ten foot bars. The reason we wanted this is that Bodhi was terrified of the deck (and no, you can’t see the drop unless you go the very edge). He never made it past the door of an area the roughly the size of a basketball court. Jani always loved it out there, playing catch with the other kids. But Bodhi was terrified and if he was going to come home, if the Abilify really worked like they swear it does for him, he should have been able to go. School was not in session when he was discharged. They told us he did go to the deck. So we took him home.

 

But based on what has happened since, I am pretty sure they got him to the deck and that was it. Straight back inside. For the month he was there, they couldn’t even get him to go to the door. This time, I think they got him to go to the door and decided that was enough “proof” that he could function in the real world and they let him go.

 

Not that I blame them. Blue Shield is breathing down their necks, wanting a release, and there are only six beds for kids. There just isn’t enough inpatient beds in full medical facilities.

 

Bodhi was exactly the same at home. He cannot function. He cannot function because the entire world terrifies him. Every moment of the day he is fighting this internal battle between wanting to go out and wanting to stay home. When he is home, he wants to go out. When he is out, he wants to go home. “Want” doesn’t quite describe it. He bites himself and thrashes around. He drops to his knees (which are badly bruised) and his back.

 

We had another IEP to set up “home hospital school” where he would go for 30 minutes with a teacher after school. He couldn’t even do five minutes. Even with me, Susan, Jani, the teacher (who was Jani’s ED teacher when she was younger), and three aides. The teacher wasn’t pushing him. She was getting out shapes, which he loves. But he was too terrified to do even that. He wants to be held by either Susan or myself 24 hours a day.

 

Our regular psychiatrist has been out of town for two weeks on vacation. Susan took Bodhi back to UCLA yesterday. He got THREE IM (intramuscular) injections of thorazine by the ER staff. But they couldn’t admit him.

 

No beds were available.

 

Our options were to either have him transported to another facility (which we refuse-thanks to Jani we know what the other “facilities” are like) or take him home. His heart rate is at 173 bpm at rest, which the ER doctor dismissed as being due to the thorazine and Benadryl.

 

Yes, we had the option that most parents of mentally ill kids and adult mentally ill face: stay in the ER until a bed opens up. The ER, along with prisons, is American’s other holding tank for the mentally ill. But I didn’t want to put Bodhi through any more stress. He had been through enough. I hoped he could come home and figured he would be knocked out from all the drugs he was given.

 

No. He kept amping up at home, constantly throwing himself around and throwing objects. Dr. DeAntonio insisted that the Abilify needs time to work. It’s been three weeks but okay. We gave it to him.

 

Abilify does not calm him down. It makes him happy… for a while. Then he goes back into the self harm. Around ten last night, he bit his thumb and tore the flesh. I will post a picture.

Photo: He bit his hand again! The ABILIFY is NOT working!!!!!!!

 

He also bit his thigh, drawing blood. We used PRNS of Thorazine, Benadryl, melatonin. Nothing worked. I have never seen anyone, let alone a child, resist this level of medication. I had to hold his arms while Susan held his head. He kept twisting like he does and I let go because if I don’t his arms will be pulled from their sockets. He doesn’t feel any pain in this state. Nothing.

 

Susan took him back to UCLA this morning. As of right now, he is still in the ER, in restraints, while the ER doctor fights with the psych team to get him admitted. The ER doctor actually physically went to see the psych team and said they rolled their eyes at him. He got angry, telling them how severe this situation is. Bodhi’s BPM remains high and now his blood pressure is falling. Not dangerous yet but much lower. He is on an IV drip of thorazine/Benadryl.

 

We will remain in the ER until he is admitted.  If a bed does not come available today, the next potential is Monday, unless UCLA considers Columbus Day a holiday. Maybe Tuesday.  Yesterday, there were eight kids in the ER with psych issues and it was either take another hospital or leave. As soon as I am done with this, I am going to UCLA to relieve Susan. I am prepared to stay overnight until Susan comes back the next afternoon to relieve me. And we will go on like that until they admit him.

 

The selfish part of me, the scared part of me, hopes those other parents agreed to transport to other facilities, even though in my normal state I would never recommend any psych unit in Southern California other than UCLA. But the other part of me knows what happens to kids in places like BHC Alhambra and Del Amo. They are hell-hole holding tanks with overworked and underpaid staff. You will have no idea what is happening to your child. If you ask questions or get upset at the lack of care, they just ban you from the unit. UCLA at least involves you and would never ban a parent from the unit.

 

And then there is the darkest part of me. The part that is afraid that Bodhi will die. The part of me that was there the day at the end of January First that I speeded home and overdosed on my anti-depressants, Jani with me, is back. The part that wants out. The part that wants to die because I am not strong enough.

 

I won’t, of course. My fucking sense of responsibility will not let me abandon these children. I brought them into the world. I have to keep fighting for them.

 

I fight against that darkness, amplified by a friend’s recent loss of his boy, Henry, for the same self-injurious behavior (he smashed his head open on concrete and was declared brain dead), by reminding myself how far Jani has come. Jani can do almost anything now. Two days ago, she was in the class with Bodhi, trying to help him, trying to reassure him. In the book, I express my fear that she would never be able to be a big sister to him. I have never been happier to be wrong in my life.

 

Jani, and so many other kids who fight their own minds every day, they are the ones who give me the strength. Briana, Brian, Jessica, Katelin, Andrew, Alysha, Mary (sweet Mary, who has been victimized like no other but still fights on), Kastle. Jacob, Jason, Chris, Nigel, and Adam, just to name a few. It is you children, and the children of the SDC 5 program, who have taught me what it means to persevere when your own mind betrays you and the world doesn’t get it. The world thinks you are bad kids but I know better. I know who you really are. I have talked you to all about Rush and Pink Floyd, taking care of reptiles, space, rockets, airplanes, the stock market (thanks, Jason!) Pokemon, Minecraft, California. You are the best fucking kids in the world and don’t you ever let anyone tell you different.

 

And I have to do this for Will and Harry. I cannot let their deaths be in vain. These boys gave their lives so we, us, society, could learn. We need to heed the lesson that childhood mental ill and autism can kill.

 

So now I have to go face my baby boy in restraints.

 

I am going to leave you with a few songs that are Bodhi’s favorites.

 

  1. Capital Cities “Safe and Sound.”  Bodhi loves it when I lift him above my head during the lyric, “I can lift you up…” Thank you, Ryan and Sebu. I think I love this song also because it’s all I want.
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  2. Phoenix “1901.”  Bodhi likes to be held during this song do and laughs when I tip him back upside down during the “Fallin,’ fallin,’ fallin,’” chorus. Thank you, Thomas, Deck, Christian, and Laurent.embedded by Embedded Video

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  3. Matt & Kim “Let’s Go.” For some reason, this is a very calming song for Bodhi. Thank you, Matt and Kim.embedded by Embedded Video

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Turn and Burn

An interesting letter came home in Jani’s backpack the other day, addressed to the parents of the SDC 5 Program (the Newhall School District’s code number for the special day classes that constitute the “ED” or “emotionally disturbed” K-6 student population in the Santa Clarita Valley, the same student population that the Jani Foundation provides free social events for). It was from two Marriage and Family Therapist Interns (MFTI), introducing themselves to the parents of the SDC 5, offering a non-specific “variety of complimentary speaking engagements and educational materials.” They say that although they spend many hours in private practice, they would also like to give back to the community through “our” local schools.

 

 

In reaching out to the Newhall School District office, we have been asked to focus our energy towards the SDC 5 Program at Old Orchard Elementary. We understand that your families (notice the shift from “our” public schools above to “your” families in this sentence) have a multitude of needs and we are very excited about the opportunity to help out in the best way we can. Our services focus on mental health and wellness for families with students in the SDC 5 Program, and are offered as an adjunct to existing mental health services within Old Orchard Elementary. Attached to this letter is a list of topics of interest. We are asking families to mark off 5-7 topics that would be of most interest to learn more about…

 

First, let me say I think these individuals’ hearts are in the right place. I am in no way disparaging their offer. ED students need all the attention they can get. Since they claim to specialized in “mental health and wellness” (I hate that term but will get to that later), I eagerly flipped the page to see what the topics would be. They are as follows:

 

  1. Behavior Management without punishment
  2. Relations (not sure what they mean by that)
  3. Anger
  4. Anxiety
  5. Fears
  6. Belonging-Rejection
  7. Balancing your needs as a parents vs your child’s needs
  8. Strengthening your Marriage
  9. Strengthening Boundaries

10. Siblings

11. Managing Stress

12. Procrastination

13. Divorce

14. Impulse Control

15. Loss and Grieving

16. Feelings of Unfairness

17. Low Self Esteem

18. Peer Pressure

19. Relationship with Parents

20. Bullying

21. Depression

22. Transitions

23. Self Downing (not sure what that means, either. Being down on yourself, maybe?)

24. Guilt

25. Performance and Competition

26. Feelings of Unfairness (again. I assume that was a mistake).

 

With all due respect to these future MFTs, this list of issues aren’t mental illness, with the exception of “impulse control” and “depression.”

 

That’s just life. Normal “sometimes things can be a little shitty” life. Things that happen to all of us.

 

Is that what MFTs are being trained that mental illness is? Emotional problems caused by the general environmental stress that comes from being human?

 

Maybe not. After all, they didn’t say “mental illness.” And I don’t blame them. Those words have stigma and not every family in SDC 5 has accepted that their child has a mental illness so if you are trying to reach them, maybe those words aren’t good ones to use. “Mental health and wellness” is more palatable if you are in denial. As I said before, though, I hate the term “mental health” and/or “mental health and wellness.” First of all, it makes mental illness sound like a Kaiser Permanente commercial: “We believe in fruits, vegetables, taking the stairs, and mental health and wellness. Be well and thrive.” But the main reason I hate the term is that it, perhaps inadvertently, minimizes mental illness. Instead of being the potentially life threatening and certainly life-destroying disease that it is, “mental health” makes it sound as harmless as being a few pounds overweight.

 

I realize that this is part of a larger turn in American medicine to “preventative medicine,” essentially trying to prevent later illness by encouraging healthy “habits” but they don’t say this crap about cancer. No, it’s “StandUp2Cancer” plastered behind the batters during the Major League playoffs. Cancer is apparently something that you fight while mental illness is about making healthy choices, having a salad for lunch instead of schizophrenia.

 

The upshot is that “mental health” ignores the worst cases of mental illness, the worst of the worst, those who have little to no ability to function so long as their mental illness is untreated.

 

But treatment, you see, is the crux of the issue. “Mental health” has been pushed by the “consumer movement” for twenty plus years now and has become the primary influence on public policy regarding mental illness. Community based, non-medical, options that do nothing for those most likely to take a bullet from a cop because, while in a psychotic state, the words, “Police! Stop the car!” mean nothing.

 

Do you “consumer movement,” encourage the mentally ill to resist medication and teach them to how to fight involuntary holds, get them out of the hospital and back on the street, making them think homelessness or jail is a viable “life choice” people think the politicians listen to you because you are right? Because your methods are actually good for those with mental illness? Because you really help people?

 

No. They don’t care whether your methods are sound or not (except for the NIMH-they are starting to push back).

 

They listen to you because your methods fit are an inexpensive “fix.” Your agenda fits quite nicely into their need to save taxpayer money.

 

Same with the insurance companies. They would rather pay for ABA over inpatient treatment because the ABA is going to be done by someone making nine bucks an hour over a full medical staff that costs about three grand a day, and that is just for room and board.

 

It’s all about the money in America. This is why I find the fears of the functionally mentally ill that they will be locked up due to hysteria over mental illness and violence somewhat funny. Who is going to pay to lock you up? Seriously. It would cost a fortune to keep you strapped down and doped up on Thorazine. It’s much, much, much cheaper just to send you to prison when your lack of impulse control because you are off your meds causes you to commit a crime.  We don’t lock up the mentally ill in America until they commit a crime. Prisons are the new American psychiatric institutions.

 

That, and schools.

 

I can’t speak for the rest of the world but America has made so many cuts since the early 1970s that there is no chronic mental health system left here now. Most states, like California, have no state psychiatric hospitals left. The few states that do are badly underfunded and facing the budgetary axe.

 

Because mental illness is the most expensive chronic illness that exists. With every other illness, either you will get better or you will die. Either way, the insurance companies and Medicaid get off the hook. But not with mental illness. They know they will paying for treatment for the rest of your life, which, with the proper treatment can be a long and happy one. Except that long and happy lives for the mentally ill are massively expensive to maintain, largely because they require fairly frequent inpatient hospitalizations.

 

So the solution is to limit the number of inpatient beds and, should you be lucky enough to get your child in, limit the time as much as possible. I call this “turn and burn” psychiatry, after the business model of low-fare airlines like Southwest, for whom the key to profitability is to keep the planes in the air as much as possible. Hence, when a Southwest flight arrives, the ground crew “turn and burn” to get it unloaded and reloaded and out again in less than 20 minutes, allowing every Southwest aircraft to fly 12-15 legs per day. The phrase itself has two origins: one coming from the restaurant industry,  referencing the need to get a large table of people who aren’t spending any money out; and from military fighter pilots, who after expending all their ordinance, “turn” for home and “burn,” lighting the afterburner. Both are appropriate to the treatment of severe mental illness in inpatient hospitals, except they call it “stabilization.” Take the patient only if the patient meets strict criteria for admission (is an immediate threat to themselves or others and even then only if a bed is available), start a medication regimen, and at the first sign of reduction of acute symptoms, release back into outpatient care before insurance or Medicaid pulls the plug on authorizing payment for further inpatient days.

 

It would be like getting someone who is having a heart attack, getting them out of immediate cardiac arrest, and sending them back out the door to monitored in the community by organizations and individuals who don’t have an EKG machine and wouldn’t know an irregular heartbeat from a hole in the ground.

 

That is how the mentally ill are treated in America, if they are treated at all.

 

The first social worker we ever had at UCLA, who is now retired, told us that in 1980 the average inpatient stay at UCLA was one year.

 

ONE YEAR.

 

Now the average is 3-5 days, with UCLA being toward the high end of that average.

 

The “decision” to put either Jani or Bodhi inpatient is never easy, even when Bodhi is hurting himself. Hell, he drove his head into the wall so powerfully once that Susan called 911. They came, took one look at Bodhi, who was still conscious, and then left. The point is that as a parent of a severely mentally ill child, you stall and stall and stall before heading out to the ER while you rush to the doctor at the first sign of a fever. You seek medical attention immediately for the normal aches, pains, and snivels of childhood yet have an internal battle with yourself when your child is trying to bite his own fingers off or, in the case of another girl I know with child onset schizophrenia, attempting to gouge her eye out with a pencil.

 

Let me explain. It’s not that you are stupid. Quite the opposite. You know how the “system” works and that is why you are stalling. First, you know you are headed for the ER, assuming you actually live in an area that has an ER and a psych ward in the same building like UCLA. And it ain’t like they will rush your child up to the unit. No. You are looking at 12 hours in a tiny room, if you are lucky. If you are not, it will be the hallway or even longer (I’ve known parents who rolled over a full 24 hour period in an ER). And it will just be you trying to keep your child safe in a place with hard floors and walls. It’s not like the nurses or the security guards are going to help you. It is just going to be you, trying to save your child’s life, for hours and hours and hours. And this is before you even get a psych consult. Sometimes, in good hospitals like UCLA, the ER doctor comes in and gives your child whatever cursory examination your child will allow. Your child is physically fine. They never seem to make a big deal out of the bruises and scratches on them. But, I suppose, internally they are fine. Heart and respiration is normal. Nothing to get excited about. And then the ER doc leaves and usually never returns (to their credit, at UCLA, whenever there is a shift change the new ER doctor always checks in).

 

While you are trying to keep your child from killing themselves, you are also wondering, in the back of your mind, whether your child will even get admitted. Psychosis goes in and out like the tide and your child might just happen to be calm right around the time the on call psychiatrist shows up. Not to mention you are so exhausted by this time you are barely articulate. Honestly, by that point you just want it to end. Either admit my child or let us go home. Even if your child is still in the grip of psychosis, will there be a bed available?

 

In America, there is a massive shortage of inpatient psychiatric beds. It is bad for adults and even worse for children as many psych units won’t accept anybody under the age of 12. If the child needs to be hospitalized, the psych doctor is supposed to order a hold until a bed opens up but this often doesn’t happen. In fact, there are even organizations pushing states to do away with the mandatory ER psych hold, even though this hold can be the last thing between a person in a psychotic state and something very, very bad happening.

 

And then there is this: even though your child is banging his head and biting himself, do you really want to put him or her through 12 plus hours in a tiny room in an ER? Especially knowing that he or she might not get admitted? Especially knowing that even if he or she is admitted, he or she will be released back home even though they still have no ability to function in the real world (because they tend to do better in an inpatient setting where there is medical staff that rotate in and out every 8-12 hours?) The hospital, even the best ones like UCLA, do not and cannot match the stressors of the real world. So your son or daughter does a little bit better and before you can even analyze if the medication might be working you get the call that your child is being released that afternoon.

 

If your child was having what paramedics call a “major medical issue” (ie, heart problems, appendix, whatever), you would never delay. You would never have to decide whether or not to try and get your child inpatient. You would just do it. Yet even though you know your child is in crisis and needs inpatient, you will go back and forth with yourself, trying to decide if you really need to take them this time or whether you think you can tough it out and get them trough it.

 

Is it really necessary? This is the question you will ask yourself over and over again when you have a mentally ill child. And you always know the answer. You wouldn’t be asking if you didn’t. You are asking because you know what the system will put you and your child through. And it they will probably come out no better than they went in, no more functional, no more safe.

 

The MFTis talk about a “multitude of needs,” but there is really only one. Can you help me when my child is psychotic and harming themselves or others? Can you help me get them inpatient?

 

I’m sorry, no.

 

That’s not on the list.

The Blind Thousand Yard Stare (Lost)

I suppose I have to write an update on Bodhi. I have to because I am going to appear at the Jani Foundation Bowl-a-Thon fundraiser on Saturday and Bodhi won’t be there. And everyone who read my last blog “Screenwriter’s Blues” is going ask how he is doing. And I really don’t want to talk about it. I hate verbal conversations because they are either too short or too long. Either I give the short answer: “He is not doing well. He’s back in the hospital,” which will be followed either by “I’m so sorry,” or “What happened?” or both, and I will respond that he is still hurting himself. The person will wait for me to continue but I will say nothing more. Then they will tell me that they are praying he gets better soon, or that they believe he will get better, or we got Jani through this and we will get Bodhi through it too.

 

I let Susan handle the long version because she is better at talking. Susan will tell you everything that has happened in our lives in the past month. She will speculate to what Bodhi needs. That’s fine. That is her way of dealing with it.

 

The truth is I just don’t have the words. My friends keep telling me that I have been through this before. Like I said, they tell me that we got Jani through “this” and we will get Bodhi through it too. Even I tell myself that this should be easier because it is our second time “down the rabbit hole.” Alice knew what to expect the second time around.

 

But it doesn’t feel the same at all. It feels worse. Logically, I know it shouldn’t. Although distant, I can still remember feeling like I was losing Jani. Not in the beginning. In the beginning her conflict seemed more with society and I remember thinking if I could only remove her from society, she would get by. Bodhi’s conflict is not with society but completely internal. But, yes, I still remember visiting Jani inside UCLA in the spring of 2009 and seeing her lying on the floor, staring up at the lights. Then I felt like I was losing her. So if I have felt this before, been here before, why does it feel like I don’t know what I am doing again? Why do I feel as lost with Bodhi now as I did with Jani? Why does it feel different?

 

I honestly don’t know. I think seeing Bodhi, who because of his underdeveloped language skills, seems younger than he is, seeing him hurt himself, bite his hands, and when you take away his hands, he bites his arms, and when you take away his arms he bends forward and bites his thighs and legs. I think seeing that level of self-destruction is the worse thing I have ever seen. Maybe because Jani could articulate why she was hurting herself when she did, even if it didn’t make sense. Maybe it is because Jani is older now, not the little girl she was then. I find myself feeling like she was always older, always a little more in control, always a little bit able to make a choice. All that is bullshit, of course. I wrote a book stating the exact opposite. Maybe it is that Jani can make choices now because her psychosis is currently under control.  A dark secret that I hate about myself is that I resent her. I resent her health, her singing along to the radio when I am in the darkness, her planning dinner. Fucked up, I know. I now resent the fact that she can go on with her life while Bodhi is stuck. When Jani was acutely ill, I refused to move on with my life. I resisted the activities of daily living. I resisted any attempt to “live normally” while she was gone.  Along with Susan, I spent six years trying to bring her back and now I resent that she is able to move on with her life, just like I resented everyone else around me back then. Really messed up. I find myself in certain moments being shorter with her than I need to be, bordering on being mean. I am taking out my pain on her. I risk her stability by talking about drama in front of her that I should not.

 

God, I am fucked up. What the fuck is wrong with me? Take out my pain over the suffering of one child on the other child who has her own tremendous struggles and has accomplished so much. I was so wrong about Jani. She has accomplished so much more than I ever, in that spring of 2009, thought she would reach. Her efforts are heroic.

 

I have to stop. She has fought too hard to get her life back. She deserves it. I should not try to hold her back with me in my misery.

 

I am making it sound like she doesn’t care about Bodhi, which is not true. She is a wonderful big sister to him. Another thing I was wrong about. I figured his fate was to take care of her after we were gone. Now it could be the other way around. Logic tells me he will return and they will take care of each other, fulfilling what I had always hoped when I agreed to have a second child.

 

But I guess that is it. Logic. I don’t trust logic. I got lucky the first time around. The universe gave Jani back. What if it doesn’t happen again? What if I am not as lucky the second time around? What are the odds that the dice will fall the same way on the table again?

 

You would think that after Jani’s recovery, I would have faith. Jani defied the worst odds imaginable. But I actually have less. Maybe the real reason I get angry at all the Bible thumpers who write to me telling me to rely on our Lord and Savior is because I don’t entirely trust Him not to be an Asshole. No, it’s not that. It’s just that life is a numbers game. Chaos theory and all that crap.  It’s not that I think God is deliberately going to screw me this time. It is just that God is a craps stickman and he doesn’t control how the dice fall. The game isn’t fixed. It’s all mathematics and probability.

 

That has always been my struggle with faith. God isn’t calling the shots. He just tells you what the point is and it is up to you to try and hit it.

 

Faith is just wishful thinking. The dice are in your hands.

 

And that is the problem. I don’t trust my own rolls and I can’t pass the dice to the next player. I have to shoot. And I don’t know what I am doing. You would think after going through this with Jani, I would have some knowledge, I would feel more confident. And I feel like people expect that of me. They expect that I know what I am doing.

But I don’t. I don’t know what medications might help Bodhi. I feel like I am grasping in the dark because I don’t know what Bodhi has, other than autism. I can’t call it schizophrenia because I am not certain of that. I can’t call it bipolar because I am not certain of that. I don’t know if he is experiencing hallucinations. I don’t know if he hears voices. All I know is he is nervous and afraid so much.

 

With Jani, I fought. I fought the whole fucking world. I was ready to take on anyone to get her what I felt, what I knew, she needed. And I turned out to be right, most of the time.

 

I don’t feel that confidence this time. I don’t feel prepared to fight because I don’t know what I am supposed to fight for. I feel lost.

 

I just want him to stop hurting himself. I just want him to not be afraid all the time. But I don’t know what he needs to get there.

 

I don’t feel like I have been here before. Maybe last time, with Jani, my anger was my shield to avoid feeling pain.

 

This time I can’t muster any anger.

 

There is only the ripping of my heart out every time I see him in the hospital.

 

There is only the pain.

BodhiandmeSep21st2013photocreditAngieLussier

Copyright Angie Lussier 2013

Note about the photo: I wasn’t aware Angie was taking this picture. This was taken on September 21st, 2013, five days after Bodhi was released from UCLA and three days before he went back. It was a brief moment of peace for him.

Screenwriter’s Blues (Listening to Los Angeles)

If you are a long time reader of this blog, you have probably noticed I rarely write blogs about my own family anymore. My reasons for that are complicated. The easiest explanation is that this is no longer “Jani’s Journey” (the old website). This is the Jani Foundation, a public charity that primarily provides free social events to “emotionally disturbed” public school children and their families in the Santa Clarita Valley, north of Los Angeles. By definition, a public charity belongs to the public which it serves, so talking about Jani doesn’t seem right when she is only one of about 35 kids we currently serve (budget and manpower limitations). Also, for Susan and I, it was always the same goal: to bring attention to the plight of severely mentally ill children. We hoped that interest in Jani would bring people to that cause. All the media we have done as been as a means to that purpose, never about our own situation, which is why I tend to roll my eyes at emails from people hearing “our” story for the first time and suggesting some “miracle cure.” However well-intentioned they may be, WE are not looking for help for ourselves. We haven’t been for a long time. So I stopped writing about Jani in an effort to separate our story from the larger issue of childhood severe mental illness.

 

Of course, the downside to that is that it leads some people to operate on information years old now and make claims that Jani is not doing any better. Jani has, for lack of a better word, “recovered.” I hate that word because it implies that her schizophrenia is gone. It is not. But it is no longer the defining force in Jani’s life. The defining force in Jani’s life now is impending adolescence. That… or Lorde, the 16 year old New Zealand singer. Or Blink-182. Take your pick. Jani goes to school for pretty much the entire day now (we convinced her to stay longer because the other kids in her ED class were getting upset that she was leaving early). Considering that she spent three years in “home/hospital” where she would go to school only after other kids had left and work one on one with a teacher, this is mind-boggling. She has friends in our apartment complex. She prefers them to her hallucination friends now. She begs me to go to the pool when she sees other kids down there.

 

I got to be honest. I can almost forget that she has schizophrenia. The events of January First seem so far removed now that it is almost like it was another life, just like that time period seemed another life removed from the one before that. She is not who she was before the acute period of heavy psychosis. People ask me sometimes if she can still “do” the intellectual things she did in her early childhood. I don’t know. I know she is smart enough to get by but I am not quizzing her like I did back in the old days. That Michael, who had hopes of Ivy League and the Nobel Prize for his daughter, is gone. Dead. Replaced by this current Michael who is just thrilled to have Jani be alive and happy and getting more and more functional everyday.

 

Her improvement is attributed to finding the right combination of medications, the efforts we made to reduce her stress level, time and getting older, and Jani’s indefatigable spirit.

 

But if I wrote all that, you would think the story is over and the story is never over. Jani still has to live the rest of her live with this disease, and we must ensure the survival and happiness of all kids like her, which is what the Jani Foundation attempts to do.

 

But that isn’t the only reason I don’t write that much about our family anymore. Part of is the simple fact that I don’t necessarily want you, the general public, to know everything anymore. I wasn’t quite sure why that was.

 

Until last night.

 

I have fresh scars. Fresh wounds. For the first time in years. Not from Jani, though. The scratches and bruises that I got from Jani when she was acutely sick have long since healed. And the psychological scars? That is what you read in January First and reason why some readers don’t like me very much. What you read in the book is me ripping apart at the seams as my daughter slipped into something I couldn’t defeat and lashing out at everyone around me. I bared my soul in that book.

 

Since I wrote the blog “Bodhi Went (Bury the Lie),” Bodhi has returned to the hospital two more times. I just didn’t tell you about it. Our closest friends knew (which is why I am very careful about who I add to my private Facebook page-don’t go looking for it. You won’t find it and even if you do, I won’t add you if I don’t know you personally). But I didn’t want to tell the world.

 

It’s not because of the tiny peanut gallery that stalks my every word on the internet and would claim, as they do, that we are trying to extend our “fifteen minutes” with yet another mentally ill child. I could give a rat’s ass about that. They can’t have it both ways anyway. Either Jani’s illness was caused by our parenting and if that is the case she shouldn’t be better and we wouldn’t “need” Bodhi to be sick or we’re not any different from other parents and Jani is better and they have to admit that we are a contributing factor. That sentence doesn’t make any sense. Neither do they. It’s my attempt to rationalize with people who need psychiatric help. Anyway, screw them. It’s not about them and I don’t care what they think. One of these days they will realize that nothing they do affects my life and the life of my family.

 

That was a waste of a paragraph.

 

The point is I am not claiming Bodhi has schizophrenia. I don’t know what the fuck he has because he lacks Jani’s verbal abilities. He probably is autistic. I don’t really care. Diagnosis doesn’t mean anything in modern child psychiatry. It’s the symptoms. You try to treat the symptoms.

 

And Bodhi’s symptoms are not like Jani’s. He doesn’t fly into rages. He throws himself around like somebody is jamming his body with a cattle prod. He is violent, but not like Jani. He is violent like he is literally on fire. The struggle is always to protect his head from the floor and the walls. He gets bruises everyday, self-inflicted. HE, and not Jani, is the reason why the downstairs neighbors complain about the noise in our apartment. He screams like he is on fire. But the fire is in his head. Only sleep, and sometimes, if he can let us, holding him bring him relief. From the moment he wakes up until the moment he finally falls asleep, he is doing constant battle with something inside his head. His ABA behaviorists can’t even work with him anymore. All they can do is try to keep him safe. It doesn’t change at school. Discussions have begun about transferring him from autism special day class to ED, “emotionally disturbed,” the same program Jani is in, only because the staff there is better trained in restraining a child for their own safety.

 

Three times this year Bodhi has gone to the hospital, always for the same issue: self-harm.

 

And he is getting worse.

 

He went back a week ago. Yesterday, Thursday, he was released. He was released so he could go to UCLA’s Autism Research Clinic. He was released at 12:45pm. The appointment at the clinic was at 1pm. Distance from the hospital to the clinic: less than 1000 yards.

 

We arrived at the UCLA Ronald Reagan Medical Center at 12:45. Susan went to pick up Bodhi from inpatient while Jani and I went to the Clinic to sign in for the appointment.

 

At 1:05, I see Susan and Bodhi coming in through the sliding doors, Susan holding Bodhi’s hand and the inpatient social worker holding his bags of belongings. She wishes us well and leaves. Bodhi seems fine, although he does want to go home. We tell him we will go home as soon as our appointment is done at the clinic, which the inpatient doctors wanted.

 

1:06pm: I lead Bodhi inside the clinic waiting room, which is very nice, filled with toys and books. The doctor is not yet ready.

 

1:07pm: Bodhi throws himself on the floor, screaming. I go down with him, cupping my hand under the back of his head to protect it.

 

At that point, the chronology gets a bit fuzzy. Bodhi is going into what I think is another of his usual fits. As soon as the doctor comes, he will calm down. I think he can be distracted. I try to show him the toys. I pick him up.

 

He tries to torpedo out of my arms, like a back flip into a pool like they have in Olympic Diving. I have him. I hear Susan tell me that they (the inpatient staff) had had to give him a PRN of Thorazine that morning.

 

I pull Bodhi’s head back up and scream in pain as he sinks his teeth into my left shoulder. I can’t see it but I know it’s bad. He’s bitten me before in these states but not like this. This feels deep. Susan gently pulls his head back. We go to the floor.

Bodhi is thrashing around in my arms and I am trying to keep his head safe from him hitting it on the floor. I do this by holding him to me but that exposes me again to his bites. I cry out again as this time he bites into my left arm. I know it’s not malicious. I know it is like someone biting down something as a reflex. But it still hurts.

 

The receptionist tells me that the doctor is coming. A few minutes earlier, I was nice and polite, but now, for the first time in years, since the events of January First, I revert to that asshole you read in the book who you didn’t like.

 

“By the time the doctor gets here, he’ll be fucking dead!” I cry out over Bodhi’s screaming, to no one in particular. Do I need to explain why I become an asshole in those moments? My child is in a state where he is unable to stop hurting himself and the only thing between him and him getting seriously hurt is me and I am losing control. I am not enough. I am rendered powerless against whatever is going on with Bodhi, just like I was with Jani, so I lash out. What I really want is to beg for help but I have become so used to people just sitting there watching that I am unable to cry out that I need help to anyone but Susan anymore because I know she will take action.

 

The doctor comes. We know him. He treated Jani long ago. He is a good guy. He tries to calm Bodhi to no avail. I am yelling that Bodhi needs to go back to the unit (inpatient), that he never should have been released. The doctor agrees. They can’t see him in this state. He pages the head of child psychiatry.

 

Susan screams in horror. I look down at Bodhi in arms, realizing that he has stopped thrashing around. He is biting down on his own fingers. Hard. Really hard. His teeth are clenched and his jaw is quivering. I can see the skin around his hands turning red, then purple.

 

We get his hands free from his mouth. He has deep purple indentations on his fingers. He has bitten to the bone. Susan screams again that he is bleeding. From his fingers? No, his mouth. He appears to have bitten his own lip. And his gums are bleeding from the friction against his own fingers.

 

From then on, I am only vaguely aware of what is happening around me as I try to keep Bodhi’s hands from his mouth by holding them (which means my hands are repeatedly bitten) and trying to protect his head. Another doctor joins in. And another. Gradually every doctor in the clinic is there, all trying to protect Bodhi from himself or calling for help. UCLA Health Security arrive. One takes over holding Bodhi’s legs while the other calls for an ambulance.

 

The original doctor writes a 5150 hold for Bodhi to get him back onto the inpatient unit, although we will have to go through the ER. But we can’t get him to the ER. The ER is a 1000 yard walk over concrete. We will never make it without risking Bodhi catapulting his head into that concrete.

One of the doctors calls 911.

 

The clinic is closed and all patients are told to wait outside.

 

UCLA Police arrive and just look in at me, Susan, the doctors, and Security struggling with Bodhi. I hear that paramedics won’t come because “it isn’t a medical emergency.” I scream that it is a medical emergency. I can feel Bodhi’s heart racing. His breathing is fast and shallow. I tell them that if EMTs don’t come soon, it will be a medical emergency.

 

UCLA has their own EMTs but they take forever.

 

At some point, Bodhi begins to wind down. Maybe that thorazine he had hours earlier is working. He says he wants to go to the bathroom. I take him. Security comes with me. He says he has to make a poopy. I help him onto to the toilet. He sits for a few minutes. I start to relax. Then he throws his head back, his head missing the flush bar of the toilet by a hair. Literally. It brushed his head. Had he hit it, he would have had a serious head injury.

 

We get him back into the clinic. He is ramping up again. I have been bitten in several places but I have no time to think about it. Just dull pain. He is back to trying to bite his fingers. He may not be trying to actually bite them off but he is biting with such force.

 

Another doctor brings out a heavy blanket just as the EMTs finally arrive. We wrap him up, him still on top of me, to pin his arms. I go onto the gurney and they strap me down with Bodhi on top of me.

 

He is calming down.

 

We get outside and there are thee ambulances, one UCLA EMT and two LA City Fire. Now they are treating this like a medical emergency and it only took one hour and forty minutes.

 

I know because I ask the EMT what time it is.

 

If Bodhi had been having a medical emergency, they would have been there for him in three minutes. But because this was a psych emergency, it took more than 90.

 

The autism doctor has to come with us because he signed the 5150 hold.

 

It is a five minute drive back to the ER.

 

I send Susan and Jani home. We could be in the ER for hours and Jani can’t do that. I tell Susan I will get a cab home.

Bodhi falls asleep. I check my wounds. They are bad. The nurses want me to check in but I won’t because I would have to leave Bodhi. Bodhi wakes up again late afternoon. He is given thorazine as a preventative measure. It doesn’t work. He eats a little then becomes agitated again. He hits his head on the side of the gurney. I am alone. I call for nurses. Eventually it takes four of us while another calls to see why it is taking so long to get him upstairs to the unit.

 

They can’t transport him. Bodhi is so bad he can not be safely transported upstairs.

 

I have been at this for hours. I need a break but I need to know Bodhi will be safe. The nurses offer to put him in restraints. I refuse. I would rather hold him.

 

Two hours after the thorazine, it finally begins to kick in and he calms down enough for transport to the Unit.

 

He has urinated on himself and needs a bath but I am a little leery about doing that, given what happened the last time I bathed one of my children in a hospital (read the book). He is calming down. I get his bed down on the floor. I am reluctant to leave him to do the admission paperwork with the nurse, but I am spent. I have no choice anymore. I can’t keep him safe and I am physically and emotionally drained.

 

The only thing I remember about the admission was when the nurse asked me what my goal was “for this admission.”

 

“For him to not bite off his fingers,” was my answer.

 

***

 

It is after 9pm when I get back outside the hospital. Dark. I have no way home. I call Susan. She offers to come get me with Jani but I don’t want to disturb Jani’s routine. She is going to bed. She tells me she has emailed the producers of the “Born Schizophrenic” series because they emailed earlier in the day, interested in discussing another special for next year’s “Psych Week” on Discovery Health. She told them what happened and said they should come down. I call them, hoping one of them can give me a ride home.

 

No answer.

 

Which is why “fame” means shit to me.

 

I call my best friend, John, hoping he is not already asleep. He works with me at CSUN. We were TAs together. I hate to drag him out knowing that he taught a full load of courses today but I have no other choice. He doesn’t answer the first time but he has told me that if he doesn’t answer and it is an emergency to keep calling. I call again. He answers. I ask him to come get me. He does so without hesitation, even though it is a hell of a drive for him.

This is not the first time he has come to get me. He came when Jani went to Loma Linda over five years ago. He came the first night Jani ever went into UCLA. I had to leave him out of the book because I was up against a hard word count from Random House and I didn’t have the time to introduce him as a “character” but he was there. On page 290 of the paperback I write “Thank you from the bottom of my heart to my friend John Gides. John came the night Jani went into UCLA and I would not have made it without him.” That’s one of the greatest understatements I have ever made.

 

Thursday night was the third time John came and the third time his presence saved me from breaking to pieces in a Los Angeles night.

 

If you have never been to Los Angeles or have never bothered to look up while you were here, you don’t know what the sky looks like here at night. There are no stars. The marine layer rolls in off the cold Pacific and the sodium lights of the City reflect of the sky, giving it this sickly orange color.  It reminds me of death.  I suppose that is why in that sky I see the desperation that is people of Los Angeles. All the people who came here because of a dream and watched that dream die. It’s all there in the night in this City, the desperation and loneliness of millions of people, sending their hopes and dreams and pain up into the night and it reflecting off the marine layer and back down amongst the freeways and the neighborhoods of Los Angeles.

 

You do not want to be alone under that sky. Being alone under that sky will eventually kill you.  The homeless here, and there are thousands, do not have to deal with cold weather, but they do have to live out there under that dead sky.

 

John saves me by not asking me to talk about what everybody wants me to talk about. We talk about the insignificant stuff. We complain about annoying students we’ve had and what it would be like to teach at a small liberal arts school instead of a giant state university, what I refer to as our Wonder Boys fantasy (read Michael Chabon). For lecturers, Wonder Boys is our fantasy of what we thought being college instructors would be like (Ivy walls, comfy offices, faculty lounges, students who actually know your name and you know theirs).

 

But it was on the ride home on the 405, looking out the window at the Valley streaking past us and that damn Los Angeles night sky, that I realized why I hadn’t told you about Bodhi’s hospitalizations after the first one and why I still don’t want to tell you and why you shouldn’t expect this blog to turn into updates on Bodhi.

 

Because this is my pain. My fucking pain. It’s mine.

 

Left to Our Own Devices (The Optimist)

Antoinette Tuff’s name is very appropriate. While Dekalb County prosecutors fall all over themselves to come up with charges for Michael Brandon Hill, who Tuesday walked into Ronald E. McNair Discovery Learning Academy with an AK-47 and more ammunition than your average military platoon carries (because of course there is no better deterrent for people in a severely psychotic state than a long prison sentence), Tuff, a front office worker at the school, may have helped the cause of treating the severely mentally ill take a giant step forward.

 

For the first time in one of these “tragedies,” there was no tragedy. Everybody got out alive, including Hill himself. That is the first significant part of this. Adam Lanza’s not around for us to ask him questions anymore. For James Holmes and Jared Loughner, it is too hard for society to look beyond the crimes they committed. In Aurora, they still want blood.

 

But no blood was spilled in Decatur. No lives were lost or changed negatively forever. No one took a bullet.

 

For me, this is a seminal moment in mental health history. Perhaps it is fitting that it happened in Georgia, the birthplace of Dr. Martin Luther King and the Civil Rights movement. For me, Ms. Tuff is the spiritual descendent of Rosa Parks. She defied fear and made a difference.

 

What did Tuff do that was so incredible?

 

She treated Hill like a human being. She talked calmly to him. She told him what he needed to hear to stop whatever it was he planned to do with that AK-47.

 

I would strongly encourage DeKalb County Sheriff’s to hire Tuff as a hostage negotiator.

 

Of course, credit must also go to Hill himself, who had enough logic left inside his psychosis to tell Tuff that he knew he should have gone to a hospital instead of coming to the school.

 

One human reached out to another human who was losing his humanity to his illness and she pulled him back. It is too late for DeKalb County prosecutors to be heroes. Tuff did what will not occur to them as they now try to punish Hill, or to the police with long guns who were ready to kill him. Without a weapon and without the loss of life, Tuff brought Hill back from the hell he was in and the deeper level of hell he was going to. It appears he wanted to die at the hands of police. They might have obliged. But Tuff made human contact despite her own fear and changed the course of history.

 

For the first time, there is nothing to distract us from the truth, which is a severely mentally ill man off his medications went into a school with a gun and was not so far gone inside his psychosis that an office worker couldn’t get through to him. We have to face that truth because that is the only truth there is. If Hill had been undergoing intensive outpatient therapy like AOT (mandated medication), he would not have gone to the school that day. But this time there are no dead children or dead anyone to mourn for. There is no killer to shake our fists in rage at. There is only a sick man.

 

I want you to sit with that for a moment.

 

Hill is and was no killer. He was a sick man in incredible pain caused by a disease you can’t see until he stuck a AK-47 in your face. He wanted to die because he wanted to end the pain. But instead of dying or killing, a woman saw the humanity that was still inside him. She saw the man inside the disease

 

And by God the disease, the psychosis, let him go long enough to lay down his weapon and get directions from the police, via Tuff, on how to surrender.

 

What makes this such a seminal moment is that for the first time the public heard from the would-be killer before he could kill. He spoke. We will never know what Adam Lanza said or did not say because everyone who could have heard him speak is dead. Holmes and Loughner said nothing because they were already too far gone. The psychosis had erased their true personality. All we have from Seung-Hui Cho is the rantings of his disease that he recorded hours before he killed 32 people and mailed to NBC News. He, too, was too far gone to show anything left of who he really was. His rants have nothing to do with why he killed and the reveal nothing about who he really was. In fact, they directly contradict who he was by the reports of those who knew him when he was still just sick and not yet a killer.

 

But Hill was not that far gone yet. Maybe because he had lived with his disease (according to his brother, it is bipolar) longer. Maybe it hadn’t been that long since he stopped taking his meds. Whatever the reason, there was enough left of him so that when Tuff talked him, he talked back. And slowly, she got him to reveal who he really was.

 

On the 911 call, Hill can heard saying, “he should have just went to the mental hospital instead of doing this, because he’s not on his medication.” Tuff reports that “He said he don’t care if he dies, he don’t have nothing to live for.”

 

He said nobody loved him.

 

And Tuff replied that she did.

 

Was she lying to save her life? Perhaps. We could be cynical like that. But I don’t think so. She obviously came across as sincere enough that Hill didn’t proceed with his “suicide by cop” plan.

 

She also shared her own personal struggles with Hill, which whether she intended it or not was brilliant because it humanized her to him, not that there is any evidence he planned to kill her or anyone else in the school.

 

Take away the gun and you have two people, two human beings, sharing their pain with each other.

 

And isn’t that what we are supposed to do for each other anyway?

 

When I teach rhetoric to first year college students, I focus on pathos, which is the appeal to emotion. Why? Because I tell them that there is one language we all understand.

 

Pain.

 

Every human on earth has experienced pain. It is pain, not joy, that is the only thing in common that all humans have.

 

Sharing our pain with each other is how we form bonds. It is how we humanize each other. It is the vehicle of our empathy, which is the most powerful of human gifts. Not sympathy. Sympathy is a false expression of something you can’t relate to. Sympathy is empty words. You all know that. Empathy is something you FEEL. Empathy is when you feel another person’s pain because it reminds you of your own.

 

Empathy, my friends, is what makes us human. It is what keeps us from hurting other people or when we do it is what makes us try to make it right. Empathy (along with medication) is the greatest enemy of severe mental illness. Because severe mental illness like the psychotic illness make you think the world is against you. It tries to isolate you. But empathy is the enemy of isolation. You stay isolated if the people around you can feel just a little something of what you feel.

 

You may never know what it is like to hear voices in your head telling you you are worthless and that you should die.

 

But you know what that feels like. Everybody has felt it. Everybody has had that moment of darkness where you can’t see the sun rise again. Everybody knows what it feels like to have moments of irrational anger. Everybody knows what it feels like to lash out at somebody that you really love and everybody knows the guilt afterward when you can’t for the life of you figure out why you hurt that person.

 

You may not know the thoughts of someone who is bipolar, schizo-affective, or schizophrenic but you know the FEELINGS. The only difference is that for you it is a moment. For them it is lifelong. You don’t have a disease that can rob you of your humanity. They do.

 

The Jani Foundation provides free social events to kids in the special education classification of “emotionally disturbed.” They are “emotionally disturbed” because they are all mentally ill in some way, but not all them have a diagnosis. Some of them may not get one until they are Michael Hill’s age.

 

But this is what I do know. Even though the vast majority of them are white and male, just like the general profile of mass shooters, I know in my heart that none of them will ever do something like this. I know you will never hear about a kid who went through the Santa Clarita Valley’s ED programs shooting up a building or killing anyone.

 

Why?

 

Because they will not grow up alone. Because of your financial support that allows to put on these social events, currently for K-6 but next year grades 7-8 and the year after that 9-12, the mentally ill children of Santa Clarita will never feel alone. They will never feel like nobody loves them. Whatever struggles they go through from here, they will have their peers and other families to support them. They will have the community which is getting to know them.

 

This is why we preach socialization over isolation. This is why we oppose residential treatment. This is why we do what we do, which is just taking these kids out to a fun event just for them and their families where no one will look at them funny or judge their actions.

 

Because medicated or not medicated (although we believe in medication, not all parents do), isolation will kill. One way or another, it allows the disease to take over.

 

Socialization pushes back against the disease. Every party, every fun event, every playing with their ED classmates tells the disease “We will not let you win. We will not give up on this child.”

 

We’ve only done two events and already I have seen amazing things. I have seen the diseases retreat. At our last event, at SkyHigh Sports where the floors are trampolines, they gave the Jani Foundation group a dodgeball court before I could realize what was happening. Dodgeball is not good for ED kids. They take it too personally. I’ve seen boys get accidentally hit in the face with a stray ball on the playground of the school and try to kill the child who threw it. I watched them go after the poor general ed child with the bad aim and watched multiple instructional aides have to hold them back. I have listened to the string of foul language directed at the other child, words that should come out of no 10 year old’s mouth.

 

Yet, this last Friday at our event at SkyHigh, they had dodgeball. And before I realized what was happening, a boy, the same boy I described above, got hit in the face by an errant throw. Both his mother and myself rushed to the edge of the court, holding our breath, ready to jump in if he went after his fellow ED student.

But he didn’t. He took off his classes, made sure they were cracked, blinked a few times, and put them back on. Then he picked up the ball that had hit him.

 

“Are you okay,______________?” His mother and I asked simultaneously.

 

He looked over at us. No rage.

 

“Yeah.” He turned back to his classmates. “Guys, watch my glasses, okay?”

 

And he went back to playing with them.

 

This is a boy who at school prefers to walk in circles by himself because he doesn’t want to talk to his classmates. He doesn’t “like” them.

 

And yet he was, actively engaging in appropriate play.

 

We had over 20 kids, all from the ED program.

 

And you never would have known that any of them were anything more than just normal kids.

 

That one moment justified everything that Susan and I have worked to bring about with the Jani Foundation. It proved to me that our program, although small and pretty simple, actually works.

 

Assuming we can keep raising money (Your tax-deductible donations to www.janifoundation.org/donate/ make these events possible).

 

Of course, I am sure there will be bumps in the road. I am sure there will be meltdowns and threats of violence at some point. It is a daily battle against their own minds for these kids.

 

But I firmly believe that as long as they are not left alone to play “Minecraft” in the basement, if you ever hear about any of them on the news, it won’t be doing something awful.

 

It will probably be for inventing the next hot video game.

 

Watch your back, “Minecraft.”

 

And watch your back, mental illness.

 

Because we know how to fight back now.

 

You will not win.

 

These kids, these brilliant, wonderful, funny kids, are ours.

 

 

 

Screw It Up (It’s Okay)

“Did you hear what Dr. Phil said?!”

 

I’ve been getting that a lot lately. At first I was reluctant to respond because I didn’t see the episode in question. Being as my time is very limited, there are very few TV shows I will make time for (thank God for DVR). I don’t even watch the shows we’ve appeared on (we still have yet to see the most recent Discovery Health/TLC special “Born Schizophrenic: Jani at 10). I only make time for “Dr. Who,” “Sons of Anarchy,” “Falling Skies,” and “The Walking Dead.” The last one I highly recommend for parents of severely mentally ill children because it is the only show on television that I guarantee will make you feel better about your life).

 

So I did not see the Dr. Phil episode, where, while attempting to tell a young woman with an obsession that she is not “insane” (her words) because, allegedly, “insane” (which is a legal term, not a psychiatric term) people “suck on rocks and bark at the moon.” As such, my fear in commenting on something I didn’t see with no understanding of the context was that I would help to create the infamous “yellow purple monkey dinosaur.” This is a reference, for those of you who don’t know, to how when one person tells something to one person, who then tells it to another, and that person tells another on ad infinitum, what the final person hears is not even remotely close to what the first person actually said.

 

But, having actually been on the “Dr. Phil” show, I knew people were waiting for a response from me. Am I going to take Dr. Phil to task, having actually met the guy? Am I willing to burn a bridge that probably did more to promote sales of January First than any other media appearance?

 

Well, I hardly think I am “burning a bridge.” How many guests does Dr. Phil have on every year? I would be shocked if he even remembered us. Nor do I expect to go back on his show, regardless of what I say. What reason would there be for the producers to ask us back?

 

The first thing you have to understand about Dr. Phil or any other talk show is the sheer volume they must produce. I am sure the producers would love every show to win a Peabody, but when you have to produce 150+ shows a year, that ain’t gonna happen. A lot of what CNN or Fox News says is crap, too. That is what happens when you have to constantly produce content.

 

This is why, I assume, Dr. Phil can do a show with a Wohlenbergs, who were in the “20/20” with us, and attribute their two eldest daughters’ symptoms to a lack of parenting skills, only to turn around two years later when we were on and make some rather cogent clinical observations (like his explanation to the audience of Jani’s “flight of ideas” being a common attribute of schizophrenia), followed a year later by this show where he seems to imply his guest cannot be mentally ill because she doesn’t “suck on rocks and bark at the moon.” So many shows based in between each of those three distinct episodes that you cannot assume that Dr. Phil actually remembers anything he said on a prior show.

Next, how these shows operate is that the producers have a variety of potential stories and who they book depends on who is available at the time they need to tape. Meeting Dr. Phil was for me like meeting Dr. Drew when I went on his show on HLN. I met him literally five minutes before the cameras started rolling. In Dr. Drew’s case, he had to be reminded who I was and why I was on his show. I hold no ill will for this. He was literally prepping for the show as they were wiring his microphone. Dr. Phil is a little more in depth than that but the total time we spent with him was less than one hour (including hours spent at “The Dr. Phil House” and then the live studio taping). In short, these guys are prepping for the show right before they go on (Dr. Phil tapes numerous shows in a single day). As make-up and mics are going on, they are deciding what they are going to ask you and what angle they are going to take. Intros and outros and read off the teleprompter but the Q&A or discussion has only a rough guideline. You answer a huge questionnaire before the show and maybe one or two (or sometimes none) of those questions make it on the air because the host has to ask what they feel are the most pertinent questions that their audience will be interested in while in their earpiece they are being told how close they are to a commercial break. They want quick and punchy statements (which is why I almost always get cut off-I talk too slowly, forgetting that I sometimes less than 3 minutes before the commercial break). For my critics who believed that I mislead Oprah about the allegations of abuse against me, I didn’t. During the “pre-taping,” the producer, filling in for Oprah, asked me about those accusations and I answered. So I was fully prepared to answer them but obviously Oprah, who, like Dr. Phil, makes the final decisions about what questions to ask, decided to skip that. Apparently, there were other questions either she found more intriguing or she ran out of time.

 

Several times prior to taping “Dr. Phil,” the producer asked us, “What help do you want from Dr. Phil?”  I guess that is how the show operates. People come to Dr. Phil for “help” and he “gets real” with him. He had a hard time with us because there was nothing we wanted in terms of help. Having remembered the Wohlenbergs show, our only request was that he acknowledge that brain based mental disorders are in fact very real. But Dr. Phil likes to preach to people (it’s his thing), hence the bizarre, out-of-left-field advice that we had a “sexless marriage” (we don’t) and that we needed to “take time for ourselves.” I guess that was the best he could manage with two parents who weren’t looking for help. We were looking to educate the audience, his audience, which is quite big: over 3 million per episode. Yes, we were overwhelmed but we were overwhelmed by Jani’s illness in the same way a parent of a child with leukemia would be overwhelmed by it. And we are advocates. This is what we do. To be an advocate, you have to be somewhat functional, which pretty much rules out most of Dr. Phil’s guests.

 

I told you all of that to give you some context about Dr. Phil and other celebrity doctors. Ultimately, they are entertainers. That is their job. So the first thing I have to say is if you are taking life lessons from Dr. Phil or Dr. Oz or any of these other celebrity TV doctors, you really need to get out and experience the real world a bit more. They are not there to “educate” you. They are there to entertain you because you watch Dr. Phil for the same reason you watch the Kardashians or Honey Boo-Boo: deep down, in places you don’t like to admit to, you like watching a train wreck. Part of it is natural human curiosity (why do you slow down to look at a car crash on the freeway?) and part of it is that it makes you feel better about your own life. These shows are a distraction from YOUR pain and YOUR suffering.

 

There are already plenty of advocates writing that what Dr. Phil said was horrible and reinforces stigma. And they would be correct. So I am not going to beat that dead horse again. For me, what is more important than what he said (because I guarantee you he doesn’t even remember saying it-it should not be taken as what he believes or doesn’t believe) is how the audience reacted.

 

They laughed.

 

Apparently, the idea of a person sucking on rocks and barking at the moon is amusing to them. Even though if a person actually was doing this they would be seriously disturbed and in desperate need of psychiatric care.

 

I suppose the image was funny.

 

Or….is it that people laugh when they are uncomfortable?

 

Come on, you remember high school! How many times did you chuckle at an act of bullying? You didn’t laugh because you’re an asshole. You laughed because you didn’t know what else to do. You didn’t know how to respond. You were afraid. So you half-chuckled because every one else was doing it and you didn’t want to stand out from the crowd.

 

Unfortunately, severe mental illness is not sucking on rocks and barking at the moon. If it were, the entire Jani Foundation and my advocacy would be unnecessary. Sucking on rocks and barking at the moon is weird… but it isn’t going to hurt you or kill you.

 

Severe mental illness does. It destroys your brain, everything that you were, are, and ever will be. It makes you cut yourself, smash your head into a wall and not feel any pain, and in general reduces you from a functioning human being to something you step over on the sidewalk and, in reality, fill your prisons.

 

In short, it takes away your control over the one organ in your body that actually gives you any control at all.

 

It takes away you.

 

And it will do it long before you realize it, if ever. You will think you are fine. But you are not. Friends and family will drift away. You will come to fear everything. If you are able to get yourself help, it will probably be anywhere from 18 months to a DECADE before you actually get any treatment.

 

Mental illness kills slowly, so I guess we can wait.

 

So, no, I am not going to take Dr. Phil to task for something he won’t even remember. The bigger issue is not Dr. Phil. It is the audience that laughed at what he said, and, by extension, the millions across the country who laughed at what he said. Not because they were bad people but because they didn’t know what else to do. It was like being back in high school and watching the scrawny kid get bullied all over again.

 

Back in high school, why didn’t you say something?

 

Fear? Not wanting to get involved in a fight that doesn’t concern you?

 

Yeah, that’s what the Germans did from 1933 to 1945.

 

It’s like that famous quote by Edmund Burke that everybody loves and attaches as their email signature but few actually act upon it:

 

The only thing necessary for the triumph of evil is that good men do nothing.

 

It’s okay to be afraid but you can’t let that stop you. Because the lives of mentally ill children and adults depend on you NOT doing nothing.

 

You think I always know what I am doing when it comes to Jani’s schizophrenia? Most of the time I am feeling my way in the dark. I have screwed up time and time again and will continue to, but I have to keep going because she is my daughter.

 

My point is that if you try to help those with severe mental illness, you will f*ck it up. Probably more than once. Human relationships are never perfect.

 

But it is the effort that matters.

For context, article by Pete Earley: http://www.usatoday.com/story/opinion/2013/07/31/pete-earley-and-doctor-phil/2596369/

and Janine Francolini: http://www.huffingtonpost.com/janine-francolini/dear-dr-phil_b_3684665.html?utm_hp_ref=fb&src=sp&comm_ref=false#sb=877486b=facebook

Upcoming Reddit AMA

I plan to do a Reddit AMA “Ask Me Anything” around the time of the paperback release of January First. UPDATE: I will be doing my AMA on Tuesday, August 6th, at 4pm EST/1pm PST. This post (and the video below) constitute my proof that I am who I say I am, which is a requirement to do an AMA.

I am sure I will get some very interesting questions. Here is a link to another reddit done about Jani and our family: http://www.reddit.com/r/TrueReddit/comments/zv1a6/when_janni_schofield_was_not_even_a_month_old_she/

 

Socialization Over Isolation (Jani Foundation Programs)

Due to re-airing of “Born Schizoprhenic: Jani at 10,” I figured this would be a good time to share what the Jani Foundation is doing. I know many of you would like an update on how Jani and the rest of us are doing and I get that. But the Jani Foundation is a 501c3 public charity approved by the IRS on June 8th. Despite our personal issues and Jani’s current status, I still have a responsibility to those the Jani Foundation is trying to help. “The show must go on,” as they say, and the Jani Foundation has a job to do, regardless of what is going on in our personal lives.

 

The primary focus of the Jani Foundation is on aiding children with severe mental illnesses like Jani, specifically providing aid within the community.  Incorporated in the State of California on Bodhi’s birthday, December 17th, 2012, myself as President, Susan as Vice-President, and the rest of the Board of Directors have spent the last six months really focusing on how we could best serve children with severe mental illness with the limited resources and manpower that we currently have.

 

The result of this has been the decision to focus exclusively on working with public school “Severely Emotionally Disturbed” or “SED/ED” programs, starting off in our home town of the Santa Clarita Valley, which includes the City of Santa Clarita (Valencia, Newhall, Saugus, and Canyon Country), plus Castaic and Stevenson Ranch in unincorporated Los Angeles County. The Santa Clarita Valley is located approximately 40 miles northwest of Downtown Los Angeles. There are five elementary districts in the Santa Clarita Valley which are Newhall, Saugus Unified, Sulphur Springs (Canyon Country), and Castaic Unified. All five elementary districts feed into one junior high/high school district, the William S. Hart Unified School District. All six school districts participate in what is known in special education terms as a “SELPA,” which stands for “Special Education Local Plan Area.” Use of a SELPA model allows several districts to pool their special education resources, which each district handling one specific area of special education (save Hart, which handles all special ed for grades 7-12). For example, Saugus Unified handles severe autistic students, meaning all students with that classification, regardless of their home district, get bussed to a Saugus school. Sulphur Springs handles K-6 students with severe physical disabilities. Despite this, all five K-6 districts handle some autistic, mentally challenged, and physically challenged students.

 

The only exception is SED, severely emotionally disturbed. All students with this classification, regardless of home district, are sent to Old Orchard Elementary in the Newhall School District, which houses the SELPA’s  K-6 SED special day classes. Newhall and Newhall alone takes these kids, many of who have been suspended or expelled from their original “home” school. If you have read January First, you know that originally Jani attended Oak Hills Elementary (also in the Newhall School District) as this was the closest to where we live. As recorded in the book, due to Jani’s behavior problems in general ed first grade at Oak Hills, the school wanted to transfer her to the SED program at Old Orchard. At the time, I resisted, feeling that they just wanted to get rid of her and believing, incorrectly, that SED was a dumping ground for kids other schools didn’t want. Since then, I have seen how excellent Old Orchard’s SED program is, how committed the staff are to the students, and how attempting to “mainstream” kids like Jani into a general education program only increases their stress level, setting them up for failure. SED special day classes, if done right, in the model of the Newhall School District, are the best option.

 

So why SED classes? The answer is that this is where children with severe mental illness wind up. Some, like Jani, have an official diagnosis. Others do not (HIPPA laws prevent the District from sharing this information with us). When California terminated funding for AB3632, sole responsibility for the placement of mentally ill kids passed to California school districts. Outside of the home, schools are the next front line for childhood mental illness. Institutions whose purpose is to educate now find themselves having to provide actual treatment, something they were never intended to do. What makes Newhall so unique is that the Director of Pupil Services, Dr. Todd Fine, is a former school psychologist who also practiced outpatient for years. Unlike other directors of student services, Dr. Fine has a commitment to the SED program and his example trickles all the way down to Old Orchard administrators, teachers, and aides. It is harder to make change from the bottom up and than from the top down and we are lucky to have Dr. Fine and his staff collaborating with the Jani Foundation.

 

Since our purpose is to provide services for severely mentally ill children, public school SED classes are the best place to start. These children are in the program because they display aggressive, disruptive, and/or anti-social behavior. Having a daughter with child onset schizophrenia and having met other children with schizophrenia, bipolar, or other mood disorders, we know these “behaviors” are not a choice made by the child but symptoms of their brain based disorders. These kids are ostracized and marginalized for something they cannot control any more than a child can control having Down Syndrome, asthma, a heart condition, or cancer. Unfortunately, we live in a society that attributes all behavior to a “choice.” Such thinking is inherently flawed. First, it does not take into account human learning. In general, humans do not commit anti-social acts because we learn the consequences of these acts. When you defy society’s rules, there are consequences. These consequences start at the micro level, as toddlers inside the home, and progress to the macro level, which is prison or death, the ultimate penalty.

 

Humans, like other animals, learn from prior experience what to do and what not to do.

 

Second, it does not take into consideration that in general, as individuals, humans are basically good. War and other acts of violence come from external social and peer pressures. Don’t believe me? Is the only thing stopping you from killing someone the fact that it is a crime and you will be punished?

 

If the answer is “yes,” I suggest you seek help. Most likely though, the answer is “no.” You do not go and kill not because it is a crime but BECAUSE YOU HAVE NO DESIRE TO KILL. So, yes, I believe that humans are basically good. In general, we want to fit in (which can backfire, leading to support for or engaging in, violence). We want to be accepted.

 

Third, like most animals, it is in our genetic makeup to avoid conflict. In general, as individuals, we do not seek conflict out. This goes back to our ancestors and the “conservation of energy” principle and the desire for survival: Don’t expend energy fighting if you don’t have to and fight only to ensure survival.

 

If you come across a rattlesnake, leave it alone and it will go away. It will only strike if it feels its life is threatened.

 

So if a child engages in repeated anti-social behavior, we must logically conclude that negative reinforcement is not having its intended effect and if so, there must be a biological brain impairment that repeatedly compels the child to engage in behavior he or she know they will be punished for.

 

This does not mean excusing the behavior. But it does mean separating the child from the behavior. There who the child is and what the child does. And then there is the unseen illness and its actions. I know these kids. Other kids in SED, not just Jani. And I have seen who they really are underneath their illness. When the illness is managed and under control, these kids are smart, funny, and kind.

 

But because most of society outside their families and the school may never see that, these kids are at risk. They are at risk for suicide, police intervention, prison, homelessness (once we parents are gone). It is not hyperbole when I say that these kids’ lives are at stake. It is vitally important that we intervene as soon as possible to try and adapt them to society because if we don’t, society will punish them eventually. But this is a two way street. These kids have illnesses for which there are no cure. Society must also adapt to them and the occasional symptoms of their illnesses. In short, mentally ill kids must learn to live within society and society must learn to let them live within.

 

This is one of the reasons why we oppose residential. Yes, we understand that sometimes parents have no other option. But a residential inherently isolates the child from society, thereby defeating the entire purpose which is to help the child learn to function in the greater world.

 

As Susan puts it, we believe in “socialization over isolation.”

 

So this is what the Jani Foundation is working with the Newhall School District to do:

 

The first part of socialization is becoming aware of more than just yourself. In my observations of SED kids, I have found that they rarely interact with “neurotypical” kids. However, with each other they engage. Every year we have a birthday party for Jani (and another for Bodhi-he doesn’t get left out). Once Jani returned to SED placement after three years of only being able to work one on one with a teacher after all the other kids were gone, we of course invited her classmates to her parties. For a year, we got no invitations to other birthday parties. When we did it again in 2012, something happened. A few months later, another boy in Jani’s class had a party. Then another. Then another.

 

Talking to the parents, we discovered a shocking fact. Most of these kids hadn’t had birthday parties since they were very young. Why? Because their behavior would scare away other kids. But starting with Jani’s parties, they realized that finally they could have a birthday party for their child with people who would not judge when their child had an “episode” in the middle of the party. And just like in their classroom, the kids do not judge each other. “Everybody has their own issue,” their wonderful teacher tells them. At a recent birthday party for one of Jani’s classmates, I watched FOUR kids from Jani’s class, including Jani, have meltdowns, never at the same time, in chronological order. When one finished, another began. Each child went to the floor (this seems to be common amongst severely mentally ill kids, possibly as a means of keeping themselves from hurting others). No parent and no other child batted an eye. The rest of Chuck-E-Cheese must have thought we were incompetent parents. No, we just know that these moments pass and the best thing is to give the child space. The children not in meltdown mode would simply step around the one currently on the floor and when he or she was done the others would welcome them back into playing as if nothing ever happened.

 

This gave us the idea for Program #1:  Social events throughout the school year just for SED kids and their families.

 

The Jani Foundation will pay the full cost of attending for these kids and their families at special events just for them. We have already lined up a swimming day at Swim Academy, an event at SkyHigh indoor trampoline, and an event at Scooter’s Jungle, a pretty damn cool indoor play area. We are working on a location to hold a Halloween/Karaoke party (these kids love to perform) and a Holiday party.

 

Originally, we wanted to do one event a month but the district was concerned about our funding stream and recommended three events. There are approximately 30-40 kids in the SED program, ranging from kindergarten to sixth grade, plus parents and any staff that would like to come. The cost for each event, including food, comes out to be approximately $500 (which assumes a 50% participation rate). Five events totals $2500 for the 2013-2014 academic year. This is an area you can help. We are seeking donations (www.janifoundation.org/donate) and sponsorships to ensure we can provide these social opportunities for these children. Your donation is fully tax-deductable to the extent allowed by law and we are more than open to corporate and small business donations. I would be happy to discuss business sponsorships and what the Jani Foundation can offer in terms of advertising (this website alone averages 4-8K hits a day). Although we wouldn’t turn anyone away, we are particularly interested in businesses local to Santa Clarita and businesses that operate franchises or divisions here.

These events need to be free because that is our best chance of getting the parents to bring their SED kids.

 

Program #2:

 

To help foster a sense of belonging and identity, we have asked and been given permission from Old Orchard to ask the incoming 6th graders to design a SDC 5 (5 is Newhall’s classification for SED special day classes) insignia and motto. The 6th graders will have to work together to design and create an insignia and motto they feel best represents them. The Jani Foundation will then pay to have this design printed on t-shirts which we will then give out to ALL SDC 5 students and staff. Assuming roughly ten dollars per shirt and total student/staff population of about 60, that comes out to $600. Again, we would gladly accept donations at www.janifoundation.org as well as sponsorships. For information about sponsoring this or any other Jani Foundation program, please write to me at mschofield@janifoundation.org.

 

Each year, the next group of 6th graders would design a new insignia and motto for another batch of t-shirts. The goal of this project is to encourage teamwork, bonding, and a sense of ownership in their program. It is also a way of acknowledging the 6th graders before they depart to the Hart High School District and it gives the younger students something to look forward to.

 

Program #3:

 

This is by far the most expensive of our programs. We want to establish an after-school program on campus for SED students as these students cannot attend traditional programs due to their potential for aggression. Because we would need liability insurance and to pay a facilities use fee, the District recommended we partner with an existing afterschool program on campus to design a special program just for the SED kids, staffed by SED program aides who are familiar with working with this student population (and whom we would have to pay as independent contractors separate from the school district). Right now we are looking to start one day a week, on Thursday (the district’s minimum day), for one hour. The program would be based on the interests of the students and built to accommodate their needs. For example, Jani tells us that many of her classmates get into trouble because they can’t sit still for long periods of time, a fairly common effect of mental illness. So there would have to be a lot of movement. Likewise, competitive sports are out because competition encourages aggression and we don’t want to do that. The challenge would be developing a program that could cover all grades, K-6. Once again, it is a bonding experience and as we expand in days and hours, we hope that this will allow parents to comfortably go to work without worrying about their kids, allowing them make a living, something that we couldn’t do with Jani because the program I am describing simply doesn’t exist, at least hear.

 

The District is behind this idea but understandably doesn’t want us to start unless we have the funds for an entire year. The last thing we want to do is to start any of these programs and have to disappoint the kids because we ran out of money. I don’t have exact per student costs yet (we are talking to Peak Enrichment, which is already on campus and willing to work with us to develop a program) nor the precise cost of the aides (although we would need to pay them above their district hourly wage to encourage their participation); however, a ballpark estimate is approximately $10,000 to ensure that we securely operate this program for a full academic year.

 

And that’s it. That is what the Jani Foundation will be doing and I need your help. Donations can be made via our paypal account at www.janifoundation.org/donate. We also have a “Donate” button at the top of our Facebook page www.facebook.com/janifoundation. If you would prefer to send a check or money order made out to the Jani Foundation, you can mail it to Jani Foundation, 25330 Silver Aspen Way #226, Valencia, CA 91381. I assure you 100% of your donation will go to our programs. The Jani Foundation has no real overhead and neither myself nor any other officer take a salary from the organization. If you represent a business and are interested in helping, I can be reached at mschofield@janifoundation.org. Our goal is to raise $13,100 before August 12th, the beginning of the new school year in the Newhall District. Please help. The more these children are socialized, the better their odds are survival.

 

Thank you.

 

Michael J. Schofield

President

The Jani Foundation

No Good Next to Diamonds

I guess the problem is we are all locked inside our own heads, isn’t it?

 

That is the reaction I get when I read reader reviews of January First. I don’t read them for validation that I am a great writer. I already know I’m not. So it’s not an ego thing. I don’t read them for sympathy either, because that doesn’t really do anything for anybody.

 

The only thing that bothers me personally is the very, very few who actually believe that I did sexually molest Jani. Actually, “bother” would be an understatement. That is the only thing left that anyone can say about me personally that will cut me to my core and rip me open all over again. And it’s not something that I will ever get over. It’s five years in the past but it is and always will be an open wound. That is a weapon my critics will always be able to use.

 

Statements, while also rare, that Jani and Bodhi should have been taken away from me sting, even though I know it won’t happen. One thing I feel like I failed to convey in the book is what that feels like to know your children could be taken away from you. Sure, I knew that DCFS (CPS) existed but before Jani got sick I thought they always saved kids from abusive parents. I thought they were like Superman and Indiana Jones and Han Solo wrapped into a government agent. I’ve been lucky. The DCFS agents who have been involved in our lives have always been cordial. Never once have I personally felt threatened or bullied by them. No, the fear comes from knowing that even people who don’t know you personally, who have never met you or your children, can drop a dime on you and call DCFS. Out of four DCFS investigations, none was triggered by someone who knew us personally and only one had ever actually met Jani (they don’t reveal the name of who “called on you” but they will say whether the report was generated from a “direct observation”). So the idea that people who have never met you have the power to call an agency that in turn has the power, and quite an easy power at that, to take your children away. Knowing that strangers have that kind of power is frightening. So frightening, in fact, that if I was doing this for any other reason than helping other mentally ill children and their parents get help, I would get the hell off the internet and you would never hear from me again. I don’t give a shit about “fame” and the money I have made is less than two years working full time teaching English composition.

 

And I liked my job. I liked my life before I lost it.

 

That is real “stigma,” by the way, not fear of not getting a job or getting into college. I don’t know if NAMI and President Obama realize that. Even that kind of fear is not what stops families of severely mentally ill children coming forward because, quite honestly, you are trying to save the life of your child. You never think about that stuff until it happens and even then, as I wrote in January First, it is secondary to getting the help your child needs.

 

I read statements like “After reading this, I can’t believe this man’s wife hasn’t divorced him!” That by the way, is a direct quote from a review. Here is the full review:

 

After reading this, I can’t believe this man’s wife hasn’t divorced him. He comes across as a huge jerk with a “special snowflake” child, and the very small portion toward the end of the book where he kind of sort of tries to apologize and/or justify his behavior isn’t enough to make him even remotely likable.

 

I read this wanting – and expecting – to have sympathy for him and his family. I ended up feeling quite the opposite.

 

 

This review makes me feel like I completely failed. I was such a “huge jerk” to this reader that Jani was rendered totally irrelevant. My behavior in the book was so much for her that the main character, Jani, became the background and the narrator, me, a secondary character, became the main focus.

 

I guess I make a hell of a villain. Fiction writers would kill to be able to write a character that produces that strong of an emotional reaction.

 

But it’s the first line that gets me: “After reading this, I can’t believe this man’s wife hasn’t divorced him.” When I first read it, I showed it to Susan.

 

“This woman must not have kids,” was her largely disinterested response, before walking away.

 

Not a ringing endorsement of me as a husband and father, perhaps, but that’s not the point.

 

The point is this: For all I know, people walk past each other everyday thinking this. I sincerely hope not. I sincerely hope how this reader’s statement is not how most people think.

 

Because if it is, our civilization is screwed.

 

People are always commenting to me and Susan, “I don’t know how you did it!” while shaking their heads in amazement. Our answer is always the same: “We did it because we had to. Jani was our child.” I go a step further and say, “You’d do the same thing.”

 

But now I am not so sure.

 

Because what does that reader’s statement really say, beyond the fact that I am apparently so much of an asshole Susan should have divorced me and broken up Jani and Bodhi’s family?

 

That when faced with someone you don’t like, that pisses you off, that drives you up the wall…

 

…you should quit.

 

Give up. Throw in the towel. Run in the other direction.

 

Yes, I have been an asshole and I have been an asshole to Susan more than anyone else on Earth. Susan has even called me an asshole on more than one occasion.

 

But Susan is not a quitter. Susan doesn’t give up. Susan doesn’t put herself, or me, before the children and most of the time, if I take my meds, neither do I.

 

Should Susan have divorced me? Possibly. I’ve given her reasons I didn’t even get a chance to put in the book for length reasons and because the focus was supposed to be on Jani. What’s funny about that reader’s statement is that I have been an even bigger jerk than she could possibly know just from reading the book. Could Susan have raised Jani and Bodhi without me? I’ll leave that for her to answer.

 

I am actually less of a jerk to her now, though.

 

I always knew Susan was unique. After all, she agreed to marry me. Most women wouldn’t put up with me. But it wasn’t until we went through this with Jani, and now with Bodhi, that I understood how unique she is. There is no replacing her. Susan is like a 1971 Dodge Challenger: they just don’t make them like that anymore.

 

It seems the more recent models may be too ready to quit when the going gets tough.

 

In all my blogs, in the book, I never got angry at anyone (other than Susan, unfairly) for failing Jani. I’ve failed Jani at times. I’ve certainly failed Bodhi as many point out.

 

The only thing that made me angry was if I thought you were quitting.

 

You can fail. We all fail. But you can’t quit.

 

You see, I don’t care if you hate me because I don’t need your help, at least not personally. Five years ago? I absolutely needed it. Jani doesn’t need it. I am reasonably confident now that she has enough people in her life who will look out for her after Susan and I are gone. I found this out when expressing my fear to the executive director of Carousel Ranch, where Jani gets her equine therapy, that her scholarship is running out and I don’t know if I will be able to pay next year.

 

“Oh, don’t worry,” she told me. “It’s easy to get a scholarship for Jani. Everybody knows who she is.”

 

Ah.

 

This came as a shock to me because I didn’t think about it. That was never what the TV appearances and the book were about for me. I never did it for Jani or for us.

 

I did it for those who are following. I did it for the severely mentally ill kids out there, that you think are just “brats” or a “bad kid” and their parents, who you think are “terrible parents.” I did it to alter your perception of them because they still need your help. They don’t have the benefit of the LA Times, or Oprah Winfrey, or a New York Times Bestselling book. They are not on your TV screen or on your Kindle Fire or on the pages in your lap. They are next door, down the street, in your kids’ schools. They are all around you.

 

So if being inside my head screwed up your chance of recognizing and sympathizing and, most importantly, HELPING them, then I apologize. I failed and everything I did was for nothing. All I did was set up Jani and Bodhi for life. I did nothing for kids in your personal world.

 

Unfortunately for those children, those who hated the book because they hated me most likely will never read this blog. I had one shot to change hearts and minds and I guess I blew it.

 

Oh, well. Don’t worry.

 

Susan and I won’t quit.

 

No Chariots of Fire

Humans are inherently rational.

 

Yes, I realize that sounds like an irrational statement.

 

But think about it. Our ancestors didn’t just look up at the big ball of fire crossing the sky and go, “Huh. Oh, well,” and then go on with their day.

 

No, they had an innate need to explain what they were seeing. Oh sure, their explanation was that the sun was carried across the sky by a God on a chariot, but it was still an explanation.

 

Other animals certainly observe their environment. Our dogs are watching me right now. But that is reactive.

 

Humans ask “Why?”

 

And this is a double-edged sword. It drives our quest for knowledge. We know what we know because of this.

 

But that desire to explain is so powerful that it creates the tendency to attribute causes to events that are not in fact true.

 

And so it is with psychosis and abuse.

 

There are still some people who believe schizophrenia is caused by childhood trauma. I understand this. It is an easy explanation.

 

And it gives us someone to hate. In rhetoric, we call this “humanizing the issue.” It is easier for people to care about people than about issues, which can be more abstract. I ask you for money for a cause and you may say no. But I put a child in front of you who needs help for that very issue and it becomes almost impossible to say no.

 

By the way, many charities exploit that reaction in you. They show you pictures of suffering children and you get on the phone with your credit card. You want to help. Unfortunately, they don’t tell you that only 10 cents of your donation will ever reach its intended target.  They prey upon your desire to save a child. That makes them scum and you a good human being.

 

Schizophrenia, of course, is not a person. It is a “thing,” a thing that we have only the barest understanding of. But a parent is a human being and therefore easier to direct your anger, the manifestation of your feeling of powerlessness.

 

Hence part of the reason why the concept of psychosis being caused by abuse remains alive in fringe psychology.

 

Those that cling to this belief, known as the “trauma model,” point to studies that show a correlation between abuse and psychotic illnesses. A correlation simply means that two things appear together in a statistical significant way. It does not mean one is caused by the other.

 

First, in those studies, have you ever looked at the average age of participants? They’re not young kids. They are people whose onset of illness occurred before the advent of modern Child Protective Services in the 1970s. Therefore, they ignore the cultural shift that occurred in America in the 1980s and 90s as we became a more child-centric culture.

 

Do you remember what it was like to be a kid in the Seventies? Kids were an afterthought. Our society flipped to a near paranoia over child safety as the Baby Boomers had kids in the 80s, leading to mass hysterical accusations of child abuse rivaling the Salem Witch Trials.

 

Studies that show a correlation between abuse and psychosis involve subjects born in the 1940s, 1950s, and 1960s. Are there studies looking for a correlation between abuse in psychosis and children born after the 1980s? No.

 

American culture has changed. For thirty years we have lived in a child centric culture… except perhaps for SMI kids.

 

So we no longer live in a culture that turns a blind eye to abuse. Spank your kid at risk of losing your child.

 

“Mandated reporters” are everywhere. Doctors, teachers, therapists.

 

I am not going to say that abuse doesn’t happen anymore but I imagine it has to be pretty damn hard unless the child is totally isolated from society. Somebody is going to ask questions. Someone is going to report.

 

Then there is the issue of how do we define “abuse?”

 

CPS defines it as the “Big Three:” sexual, physical, and neglect.

 

Emotional abuse, because the major difficulty in defining it, is not counted. Emotional abuse is subjective, hence the reason why it is not criminally prosecuted. And by the way, I am not talking about PTSD, which is a psychiatric diagnosis triggered by extended and intense periods of existing in a “fight or flight” state.

 

Yet, 9 times out of 10 it is the amorphous “emotional trauma” that advocates of the trauma model point to.

 

In terms of sexual, physical abuse, and neglect, there is no higher rate amongst severely mentally ill children than the general population….

 

…as long as they stay with their parents. In residentials and foster homes, the numbers are exponentially higher than the general population. I don’t say to demonize foster parents. Most are not abusive and are fantastic parents. That is just the stats. In Texas, the rate of abuse amongst those in foster care or residential is a whopping 4000% higher than the general population.

 

I am not saying that the trauma model needs to be abandoned to spare the poor parents. Parents of SMI kids go through way more difficult things. What the peanut gallery says means nothing.

 

No, the concept that psychosis comes from abuse is dangerous because it is a simple explanation that prevents us from looking for the real cause. It takes us away from biology and provides a simple answer that if the child was removed from the perceived abuse, he/she would recover. This prevents us from pushing for research and medical treatments. In other words, the trauma model negates the need for research. That is its biggest risk and why it must be abandoned.

 

Thankfully, some of our ancestors didn’t accept that the sun was pulled across the sky by a chariot. Because of them, we now know the sun appears to move because we are turning on our axis.

 

Relativity is a bitch.

 

If we keep defaulting to abuse as the cause of psychosis, we lose the perspective of the greater environment.