“How do you and Susan keep your marriage together?”
It’s a question we have gotten for years, really ever since our story became public. It was a question I found difficult to answer because I couldn’t really comprehend the question. I couldn’t understand how we could not stay together in this situation. Raising Jani and Bodhi was stressful enough. Why would we add to that stress by splitting up?
However, my answer was usually along these lines: “We are both committed to the kids.” Susan would say the same thing.
What I realize now is that wasn’t an answer to how we stay together. It was an answer to why we stay together. We stayed together for the kids. What I now realize is I never thought about how we stayed together.
Yes, past tense.
I never understood why it was so amazing that Susan and I together. After all, this is what parents did. They stayed together. It is tempting now to get irritated with everyone who asked that question, as if every question was a chip off the armor that held us together.
Armor. What you wear into battle. We developed this armor from years of fighting both against Jani and Bodhi’s condition and for them against the rest of the world. I think the latter was more destructive. Fighting for help for them was far more costly to our souls, to the point that that I am not sure what is left anymore.
I wanted to write this because of all the people who said we were strong. And maybe we were. But you can’t be strong forever. I am writing this because eventually I broke.
I had an affair, but that isn’t the break. An affair is just a coward’s way out of a marriage and I wanted out. Why I wanted out is harder to explain.
Susan and I made certain decisions to put the kids first. This was necessary to keep them out of residential. I do not regret those decisions. But every decision has consequences. For every decision, there is a price to be paid. In this case, our marriage was the price that had to be paid.
I talked in an earlier blog that when one runs away from a marriage under stress, they are really running from themselves. But the marriage wasn’t under stress. It was non-existent. We were caretakers of the children only. I tried to kid myself, and so did Susan, that we didn’t need to have time for each other. We bristled at the suggestion from therapists and friends, largely because we had no time for each other. But we tried to kid ourselves that it didn’t matter. It did. And then at some point, I don’t know when, I looked at Susan and didn’t see my friend any more. I saw my fellow caretaker. My fellow employee in the service of two special needs children. We were co-workers. Worse still, we had turned into something I didn’t like. We were angry all the time. Worse. We were embittered. Not at the children. At each other. But why? When did we start to turn the anger on each other and eventually on ourselves? Every ounce of anger at the failures of the system turned in upon ourselves because we had nowhere else to put it. Those who worked in the system didn’t care. Or maybe they did. They offered words of support but words are empty. How were we supposed to take time for ourselves? Even if, hypothetically, Susan and I could have gone on vacation, when would we stop thinking about the kids? Never.
They offered us residential and as I have said before, it was always offered based on what it could do for us, not on any therapeutic benefit for Jani and Bodhi. Now I realize they were trying to save us. Susan and me. But if that was the only way to save us, I am glad we weren’t saved. I would rather have gone down in a fiery crash than send Jani and Bodhi to residential. If that is what it would have taken to save our marriage, both Susan and I would agree it wasn’t worth saving. That was not a price we were willing to pay.
Divorce, however, is a price we are willing to pay.
Did we fail? Yes, we did. Susan and I did not succeed at everything. We failed. I failed. I worry about how Jani is taking it. Right now I am still there every day so as to minimize the impact on her. Could I have stayed with her mother for her? Jani is nearly thirteen. Could I have hung on for another five years? Maybe. Maybe not. In some ways, I feel like it was killing me. But what difference does eighteen make? Even if Jani was neurotypical, what difference does eighteen make? Why do we delude ourselves into thinking it will be better when the kids are older? Because they are more likely to understand? To forgive us?
Ah, yes. That’s it. We put it off because we hope that we can explain ourselves and they will understand and forgive us for breaking all they have ever known. When it comes to our children, we desperately want to be forgiven. We want their approval as badly as they seek it from us.
That is what I want to know. Will Jani and Bodhi forgive me? Probably, because I am their father. But that doesn’t make me feel any better. I forgave my father too because he is my father. It doesn’t mean it doesn’t hurt.
So if it is going to hurt in five years as much as it hurts now, why not do it now?
I’m putting the kids at risk, you say. Their stability is built on the stability of their world. I know that. I am aware I am putting both kids at risk. That doesn’t make me feel good. But I was putting them at risk by staying. I was resentful and that resentment was spilling over. I miss the father I used to be, the one whose only focus was on keeping Jani happy. I miss being funny and making her smile. I miss engaging with her the way I used to, when I wanted to, before it turned into an obligation.
Of course, during that time I was also pretty much ignoring Bodhi. I think one of the most insidious things about autism is that because Bodhi doesn’t talk, I don’t talk to him as much. He becomes background until he has a meltdown and needs restraints, taking his star turn, which is what you have to do in my family.
So the risk was there anyway.
I wish I still loved their mother. I really do. I wish to God I could still feel for Susan what I felt when it was just us, before Bodhi, before January, before anyone knew who the fuck we were.
But I can’t. I can’t feel what isn’t there. Susan is my co-pilot. We took turns flying the plane. That is not a husband and wife. I don’t know what a husband and wife are but that’s not it. They aren’t co-workers.
Three years ago I wrote a blog called “Stay Together for the Kids.” In it, I gave advice on how to keep a marriage together. Looking back at it, it wasn’t advice at all. It was the early warning sign of my own failure.
In the end, I was as human as any of you. I didn’t do a better job.
All I can tell you now is you have to decide what is more important to you. In this life, with mentally ill children, something is going to have to go. You have to decide what that is. In our case, it was our marriage.
Sorry but it’s no[t] right or fair or ethical to subject the world to potential danger just to spare the feelings of these parents who foolishly, selfishly bred twice. Either medicate these kids to the zombie level or put them [i]n an institution. They are proven violent and cannot be cured. -Yahoo commenter
The gunman suffered from an undisclosed mental health issue, and was under the care of a variety of health care professionals… -CNN
That the concept of eugenics is alive and well in 2014 is scary. Oh sure, I get that it’s the internet, where people can anonymously spew crap online and nobody important is actually listening to it. But the problem with that anonymity is that it allows people to say what they would never say face to face with another human being but unfortunately actually think. Or is that the internet simply lends itself to spouting off half thoughts we all have? After all, the electorate aren’t furiously writing their members of Congress to say they want legislation protecting them from the mentally ill. Right? Nobody has brought this issue up in town hall meetings and candidate meet and greets. Right? I don’t hear CNN recording a candidate shaking hands with an elderly couple eating pancakes at some diner in New Hampshire and the elderly couple expressing concern over these dangerous mentally ill who will kill us all if not locked up. Right?
And then Elliot Rodger goes and brutally murders a bunch of people and within hours the term “mentally disturbed” is being used by the actual authorities investigating.
I’m going to pause here while NAMI (the National Alliance on Mental Illness) issues their standard statement that the vast majority of individuals with mental illness are not violent.
Have they done it yet?
SAMHSA (the Substance Abuse and Mental Health Services Administration, the arm of the Health and Human Services Administration that is charged with government services and policies regarding “mental health”) won’t say anything at all, because mental health for them is essentially depression and anxiety. Psychotic illnesses, such as schizophrenia and bipolar, are not even acknowledged by SAMHSA. I’m serious. They even make no mention of the words.
No, I am not saying Elliot Rodger had schizophrenia or bipolar. I have no idea what he had and can’t speculate from a Youtube video where he calmly plans retribution on the girls who wouldn’t have sex with him and blames us, society, for his still being a virgin at 22. But of course, killing a bunch of people because you identify as being socially rejected is a perfectly reasonable thing to do.
Society, it seems, has finally stopped saying “Why?!” when a mass killing happens. They are willing to attribute it to mental illness, partially because this information is being released to the press much faster. It used to take months, even years, and by then the story was forgotten. Now it is out there while the dead are still oozing blood onto the pavement. And partially it is because it is true. The vast majority of single event mass killers (as opposed to serial killers) in recent times have had a history of mental “health” problems preceding their horrific crimes against their fellow humans.
And now my children, my precious girl and boy, have been lumped in. They, by bad luck of their respective diagnoses of schizophrenia and autism, “subject the world to potential danger.” Another comment sticks out to me from a mother who would never let her kids around my kids.
I can’t get too angry though because I brought this on. Yes, I did. How many blog entries and Jani Foundation Facebook page posts have I written, drawing a connection between Jared Loughner or James Holmes or Adam Lanza and my children, especially Jani?
My God, what have I done?
I did it with the best of intentions. I did it because I wanted society to understand that we could have prevented what Loughner, Holmes, and Lanza did. They were children once, just like Jani and Bodhi and somewhere along the line, I believed, the non-existent support system for the mentally ill failed them and people died. I believed that if we simply could have mandated inpatient psychiatric treatment for those three young men, we could have saved lives.
Other advocates warned me of the danger of associating these killers with the mentally ill I was ostensibly trying to help, telling me that we would get nowhere in terms of improving treatment options because society does not help those they fear. I dismissed them as cowards for not “owning” these killers as belonging to us, our people.
And now I read about people believing my children should be locked away for the rest of their natural lives because they are either a threat or a burden to society. And they would actually be able to do this if I’d had the influence to bring back the state hospitals, as I have advocated for some time.
But another six people are dead, cut down in what was supposed to be the prime of their life. Of course, if the Federal Government did nothing substantial after 20 children under 7 were killed at Sandy Hook Elementary, they probably won’t do anything about this. Right now the instinct is to find the Adam Lanzas and Elliot Rodgers of the world and lock them up. But to lock them up before they have committed a crime requires changing the law to make it easier to place someone in a psychiatric hold, make it easier to actually force anti-psychotic medication on them, and, finally, to actually build those locked state hospitals for the mentally ill that we, the taxpayers, allowed to be shut down from the 1970s to the 1990s. Camarillo State Hospital is now California State University, Channel Islands. Do you want to close that campus, tell the students to get out, and re-open the state mental hospital, which was the last one to actually take children? I mean, does the California State University System really need 26 campuses?
The fact is we have come to a crossroads. The general public is scared of the mentally ill. If they are scared of an 11 year old girl and a 6 year old boy, all the “most mentally ill are not violent” comments in the world will not going to change their minds when all they see of mental illness is its albeit rarest incarnation, the mass killer. They don’t give a shit about my children and they sure as hell don’t give a damn about you adults with mental illness, worrying about keeping your jobs or completing your college degree. When a society can justify the removal of children from their ranks based on projections of their likely future, we have reached the edge of the Final Solution. We have not yet reached the point of the Nazis where we are willing to kill such children, but once the cost of restoring those state hospitals becomes reality, it won’t be long. Death is cheap. Taking care of someone over the course of their apparently unproductive lifespan is not.
For the advocates out there who will keep denying that the severely mentally ill can be violent, you can keep going. I admire your tenacity. I respect it. I get it. You are fighting to “fit in” with the larger society. I used to scoff at the idea that they would come for you to round you up and lock you away. Now I am not so sure.
The concept that previous violence is the best indicator of future violence clearly does not hold true in these cases. The fact that you’ve never been violent, or so you believe, won’t matter. You have a history of being “mentally disturbed.” You try to hide it but honestly this is like an African American painting on white-face: you can’t hide who God made you. You can’t hide how your genes aligned. All that will happen is that you will be silent witness as the mentally ill are wiped from the face of America. That is, until they find out about you. It will happen. Despite your best efforts, you will have an “episode.” College and life are stressful. Stress is lifeblood to psychosis. The fact that you have no gun means nothing. Rodger’s first three victims died of repeated stab wounds. There have been plenty of mass stabbings (I recall one in Houston). Look, I am all for banning handguns. The NRA is irrational. There is no meeting them halfway. Certainly, banning handguns would cause a severe reduction in mass killings, as it has Norway and Australia, both of which took action to do so after mass killings. Banning handguns would help. Rodger is just the latest to buy his guns legally because there was nothing to prevent it. Loughner bought his gun legally. Holmes bought his gun legally. Lanza’s guns were legal.
Banning guns would limit these mass killings to those so “mentally disturbed” that they don’t mind getting up close and personal with their victims, which is what it takes to stab somebody. Rodger believed he would be a “god” and certainly it is easier to “play god” and lay waste to your fellow humans with a gun. It removes you somewhat from what you are doing. You are just pulling the trigger. You are above the death, just the agent of it.
Or maybe not. Rodger did stab three people to death. He clearly had no issue looking his victims in the eye (which is what I assume it takes to stab somebody repeatedly).
No, as advocates, whether you are a person with a mental illness or a loved one of somebody to has one, the time has come for change. Society would prefer you, like my children, never existed. You have no right to exist. Your existence means only suffering for others and, insidiously, for you, and this is the road to elimination. It will start, not with the government. It never does. It will start with vigilante justice. They will start with those on the streets, raving to thin air, ironically the group with least access to guns. If you have a history of mental illness, you are a threat. They believe you are capable of killing their children, just as some believe my children might harm their children.
Are we to hide the symptoms of our illness, just as some Jews hid their religious background?
Or do we take control of the situation while we still can?
[Elliot] Rodger’s family contacted police in the weeks before the rampage because they were concerned about his mental well-being after discovering social media posts about suicide and killing people, attorney Alan Shifman, a family spokesman, told reporters Saturday.
And Rodger wrote about it in posts on his YouTube channel: “I temporarily took all of my Vlog’s (video blogs)down due to the alarm it caused with some people in my family. I will post more updates in the future.”
The man sheriff’s deputies met during the “welfare check” on April 30 was “polite” and “shy,” Brown said.
“He expressed to the deputies he was having troubles with his social life, and that he would probably not be returning to school next year,” Brown said.
There was nothing in his behavior to suggest he was violent, and the deputies “determined he did not meet the criteria for an involuntary hold,” he said. –CNN
The family asked for a welfare check, concerned by Rodger’s social media posts about suicide and killing people. When police checked on them, Rodger was “polite.”
There was nothing in his behavior to suggest he was violent and the deputies ‘determined he not meet the criteria for an involuntary hold.’
That’s because an involuntary hold of 72 hours requires that the individual be an IMMEDIATE THREAT TO THEMSELVES OR OTHERS IN THIS EXACT MOMENT IN TIME THAT THE ASSESSMENT IS DONE. It doesn’t matter if you were writing posts about killing people five minutes earlier. You are not an IMMEDIATE THREAT. It doesn’t matter that as soon as you leave the ER you will hang yourself in the bedroom, you are not an IMMEDIATE THREAT.
That has to change. I know so many adult advocates cringe at this for fear of being placed on a 72 hour hold but you know psychosis. You know it goes in and out like the tide. You know disordered thinking can be hidden. For those of you who have attempted suicide and survived, you know it was not a sudden decision. The danger is not when you are in the 72 hour hold. It is after, when you are alone with your thoughts.
You also know that adults cannot be forced into inpatient treatment without a judge’s order. Even parents of teens with severe mental illness cannot force medication compliance.
I’ll be honest. I would much rather police take my children in for a 72 hour hold than kill them or taser them. It’s three days of your life. And if you need intensive psychiatric care you get it. And if you didn’t, you only lost three days. Better than losing your life.
So here are my proposals that we must get behind:
1.We must support Laura’s Law and “Assisted Outpatient Therapy.” We must work to make it easier to enforce med compliance.
2.The 72 hour psych hold should be changed so that the individual will be admitted for any written statement of suicidal or homicidal ideation in the last six months, in social media or anywhere else. I say “written” because it proves you said it and avoids hearsay. There must be other safeguards to prevent abuse.
3.The United States should ban handguns, starting with high capacity magazines and high caliber weapons. The ban on “assault style weapons” goes without saying.
4.A psychiatric examination should be part of every annual physical.
5.SAMHSA should be eliminated from the HHS and responsibility for mental health services turned over to a new agency that answers to the National Institute of Mental Health.
These actions are, of course, massively oversimplified. To accommodate the 72 hour psych holds, we need more inpatient psychiatric beds, and they must be in full medical hospitals. Right now, individuals in questionable mental states are released due to a severe shortage of beds. Yes, society is going to have to pay for more inpatient psychiatric beds. Or they can pay with their lives.
In the end, where these killers were “mentally ill” doesn’t matter. What matters is they needed the strongest intervention.
Whatever you feel about what I wrote, you must acknowledge this. Those amongst us who most needed the help didn’t get it.
Usually when mental health advocates talk about a fictional portrayal of mental illness, it is to complain about it, and with good reason. Mental illness in Hollywood is either played for laughs or as a standard horror trope to provide motivation for the psychotic killer. Of course, mental illness is one of the last socially acceptable stigmas in our society. Traditionally stories about mental illness fall into one of two categories: laugh at the insanity (both comedies and horror films) or see mental illness as the repression of individual “quirkiness” (One Flew Over the Cuckoo’s Nest, Girl, Interrupted, and every other drama about mental illness). If society wasn’t so filled with stuffed shirts, these free spirits wouldn’t be institutionalized is the basic concept. Both of these fictional treatments of mental illness are based in denial: the former (the “psychopath” allows us to create distance between us and “the other”) and the latter uses pretentiousness to deny the seriousness of these illnesses.
So you can imagine my shock after watching last night’s episode of AMC’s “The Walking Dead,” entitled “The Grove.” If you watch the show and this episode is still waiting in your DVR, you need to stop reading right now. I generally don’t give a damn about spoilers but not this time. I really don’t want to take away from the emotional impact so stop reading if you haven’t seen the episode yet and intend to.
“The Walking Dead” has touched upon mental illness before, to debatable realism, but what makes this episode so seminal was that it tackled mental illness in CHILDREN.
A tv show about a zombie apocalypse presented the most realistic fictional portrayal of childhood mental illness I have ever seen.
And that is why the episode was so unsettling. It wasn’t until the damage was done that I realized the full magnitude of Lizzie’s mental illness. Lizzie was first introduced in the fourth season premiere “Thirty Days Without an Accident” in mid October. Six months ago. For six months Lizzie’s mental state has been staring me in the face every Sunday night. Of course I saw her weird ideas, her emotional flat affect, her “oddness.” Clearly, the girl wasn’t right in the head. But I made excuses. She lost her parents. She is growing up in the middle of the end of the freaking world zombie apocalypse. No one would expect her to be right in the head in those circumstances. But I didn’t take it seriously until she killed her sister.
Over and over, a theme emerges with Adam. Not just the failure to realize the full gravity of Adam’s increasingly strange thoughts and behaviors. Beyond that, the theme is focusing on the wrong thing. A psychiatric nurse at Yale who evaluated Adam many years before felt that his parents were overly focused on his academic performance rather than his increasing social isolation.
It reminds me of Carol, so focused on trying to teach Lizzie to survive in the walker world that she missed the biggest obstacle to her survival. Carol was the one who taught Lizzie how to use the knife that she would later use to kill Mika.
Kind of like Nancy Lanza buying Adam guns.
Nancy, like those of us watching “The Walking Dead,” missed the forest for the trees.
And that is what made “The Walking Dead” and 11 year old actor Brighton Sharbino’s portrayal of Lizzie’s mental illness so realistic. Denial.
Denial is what makes serious mental illness so dangerous. Denial is what allows it to grow unchecked within the mind of its victim. Denial is what will ultimately kill the victim, and, on rare occasions, others.
Readers of January First have criticized my denial in regards to what was happening to Jani. Prior to Peter Lanza’s interview and last night’s “The Walking Dead,” I had bristled at that. How was I supposed to know? We are not programmed to look for mental illness or even think about it. Humans, by nature, are wired to deal with problems immediately in front of them. That is what has kept us alive as a species. Consequently, when confronted by the symptoms of mental illness, we tend to make excuses until the symptoms no longer allow us to. For me, that came when Jani became violent not long after Bodhi was born. The need to protect Bodhi forced me to face the seriousness of Jani’s then unnamed condition, just like the need to protect Judith forced Carol to “deal” with Lizzie’s mental illness in the only realistic way available in a post apocalyptic world where she “can’t be around people.”
Now I understand that when people read the book who are not Jani’s parents, they see obvious signs of Jani being disturbed long before I accepted it. Now I understand the judgment levied against Nancy Lanza for having firearms in the house. Those outside the situation see things in black and white. They see things only in terms of the safety of others. It is an easy decision for them. But for those of us inside the situation, it is different. We don’t see not because we are stupid but because of hope. We eternally hope for the best. We want to believe we can solve the problem and make everyone okay. Nancy gave Adam access to guns because of hope, hope that guns would be the way Adam could connect to the world. It’s not blind optimism. It is desperation. No parent ever wants to believe that their child is lost forever. For most of us, giving up on your child is the greatest sin a parent can commit. So we keep trying, refusing to give up, refusing to accept what those outside the situation see having only one inevitable outcome. You call it stupidity. We call it love. We cannot give up.
It is this undying hope for a better outcome that is both our greatest strength and our greatest weakness. It is the answer to “I don’t know how you do it,” and the cause of our greatest failures. It is what caused the Sandy Hook Massacre. Hope springs eternal because it is what keeps us going. It is also what causes us to dismiss that which we shouldn’t.
For us, Jani’s violent impulses forced us to face the truth before it was too late. Unfortunately for Nancy Lanza and Adam’s 26 other victims, there was nothing to force her to face the truth of what was happening to Adam was far more severe than just Asperger’s. Unfortunately for Carol on “The Walking Dead” and Lizzie’s sister, Mika, Lizzie did not do enough to force those around her to face the truth until it was too late. Just like with Adam, there was nothing Lizzie did before that would give any indication of what she would do. That is, until after the fact. After the fact, looking back to her first appearance, her reaction to the walkers, her lack of emotional response, it seems inevitable.
Of all the sick, demented things that have happened in the zombie apocalypse on “The Walking Dead,” it’s hard to imagine any as shocking and sad as seeing insane little Lizzie standing over the sister she just stabbed to death, no concept of what she’d just done, fully expecting her to “come back.” Carol being forced to kill Lizzie was a close second. There’s really no two ways about it, this was one of the sickest episodes of “The Walking Dead” in its entire run. All the darkest crevices of the human psyche come out in tonight’s episode, “The Grove,” and while it’s one thing when you see a character like the Governor do shocking, demented things, it’s far more upsetting and uncomfortable to see a child, a little girl, doing them. But that’s where this show went tonight. It’s hard to imagine any other show on television would go that dark. You really have a build an audience up for it, because it’s not an easy thing to swallow at all.”
Vigna just can’t believe it. I suspect he had the same reaction to the Sandy Hook Massacre. Certainly this editorial uses much of the same terminology used to describe Adam Lanza: “sick,” “twisted,” “demented.” But what bothers me most is this line:
All the darkest crevices of the human psyche come out in tonight’s episode, “The Grove,” and while it’s one thing when you see a character like the Governor do shocking, demented things, it’s far more upsetting and uncomfortable to see a child, a little girl, doing them.
Essentially, what Vigna is saying is that it’s okay for the character of the Governor to be psychotic because he is a villain. That doesn’t conflict with Vigna’s sensibilities and conception of psychotic violence. But it is “upsetting” and “uncomfortable” to see a “little girl” psychotically violent. Why? Because that conflicts with Vigna’s image of children. It would be different if Lizzie had been a villain from the get go but because we were made to care about her, her final psychotic action is too much for him. I don’t blame him. We all wanted Lizzie and Mika to be okay. They were children. Innocent.
But that is the point, Mr. Vigna. A tv show about survivors in a zombie apocalypse made you feel what we parents of severely mentally ill children feel everyday. Everyday we watch the children we love, the children we would die to protect, fight a battle against an enemy we cannot protect them from and who is stronger than we are. Everyday we see the innocence of our children torn away by the ravages of severe mental illness. Everyday we watch them lose a little bit more of the ability to live in our world. And every day we live in fear that eventually we will lose them forever.
I am sorry to say, Mr. Vigna, that little girls can do shocking, demented things. It is called severe mental illness. I am also sorry to say that their parents have to make decisions like Carol: the needs of the mentally ill child versus the needs of the larger society. We try to balance the two. Sometimes, like Nancy Lanza, we fail. The rest of us are just running like the characters on “The Walking Dead” from a herd of zombies, hoping that we can carve out a life for our disturbed children in this apocalypse.
The story was very familiar. I’ve both lived it and know many other families going through it right now. In fact, right now one of our friend’s 12 year old son is having felony assault charges pressed against him by the principal, teacher, and aide of the special education “ED” or “emotionally disturbed” class because he gave the aide a black eye while they were trying to restrain him. This boy has been diagnosed with autism, intermittent explosive disorder, and mood disorder NOS (not otherwise specified).
Many of you with severely mentally ill children will sadly understand this. For those of you who don’t, let me give you an analogy that would relate.
It is like praying to God for deliverance and instead God telling you to go fuck yourself. Followed by then turning to Satan (because he is the only other game in town) for help and Satan also telling you to go fuck yourself.
If neither Heaven nor Hell will take you, what exactly are you supposed to do?
I have said it before and I will say it again: if you can’t take a punch then you shouldn’t be working in mental health. You are a coward. You should not be in that position.
As far as I am concerned, that aide should not be in that field if he or she is going to press felony assault charges against a mentally ill 12 year old who gave him or her a black eye. I see no difference between that an a child with cancer who throws up on your shirt.
Back to the request: Can you help this family? The Cristinis.
I hate to answer that question, not because I don’t have an answer but because I don’t like the answer.
No, I can’t.
Several times now I have gotten calls from people in the Santa Clarita Valley seeking mental health services. For a long time I couldn’t figure out why until I realized that the Santa Clarita Chamber of Commerce only lists two companies under “mental health.” The Jani Foundation and the Santa Clarita Child & Family Center. The calls I’ve gotten have been from those seeking help for adults, which of course the Child & Family Center, per their name, does not provide. So we are next on the list.
When I first started getting the calls, I thought it was because they had seen us on TV. I spent thirty minutes on the phone trying to help one young man who was concerned about his uncle before I realized he thought the Jani Foundation was a care provider. More calls kept coming looking for mental health treatment. I thought surely this must be a mistake. Surely we cannot be the only listings for mental health in an area with a population of 160,000?
We are. One agency largely funded by the state and a tiny non-profit desperately trying to raise enough funds to put on free play events for mentally ill and autistic kids.
Which is exactly what I have to tell these people when they call. If they give me a chance I try to give them the number to UCLA’s Resnick Neuropsychiatric Hospital but most of the time they say, “Oh. Thank you anyway,” and hang up before I can. I understand. I remember making all those dead end phone calls. I remember what it felt like to call, pouring out Jani’s entire life history, starting to feel a faint hope that maybe we might have finally found someone who can help, only to get the “I’m sorry. We don’t do that.” I always hated those people and now I am one of them. I am on the other end of the line turning people away because the Jani Foundation does not have the resources to provide what they need.
The Jani Foundation is not a national organization. Like I said, I have to beg and scrimp just to get the money to do our social events, which are getting larger as more and more families are coming. At our last event the previous Friday, a mother told me that if not for our play events, she and her son would have no friends. When I posted pictures from our last event on our Facebook page, there were a lot of statements from other parents wishing something like what we do existed in their area. Which breaks my heart. I wish I could help set up Jani Foundation franchises and fund free social events for mentally ill/autistic kids elsewhere in the country and the world, but I can’t. We have no extra funds. Everything we raise goes to our free events for the local kids and I am forever worried that I won’t raise enough to even pay for those.
What started with a few kids from the local ED elementary program has grown to the point where our most recent event cost more than all but one of our previous events (the Halloween Rocks party for the kids) combined. We don’t yet have corporate sponsors. That takes time. It takes a long time to build a charity.
And in the meantime I feel like I am presiding over one of the lifeboats from the Titanic. I am not knocking people off the boat with an oar yet but I can hear the screams in the darkness and there is nothing I can do. Our lifeboat is already full. I want to help but I need a bigger boat.
Which brings me to what this blog is really about.
Mentally ill children and their families are drowning. Sure, I appreciate CNN doing the story on the Cristinis but that story, much like ours, is just a telegraph message from the Titanic to the California that won’t be received because the California’s telegraph is turned off. Our collective stories are flares in the sky that no one will see because the larger ships that could help these families are beyond the horizon. Sure, you see them but most of you are in your own lifeboats. Or worse yet, in the water, with mere seconds left before you drown. And what is drowning? When your own son tries to kill you. When you child refuses medications and winds up on the streets. When your child is serving a prison sentence.
Drowning is when one way or another you lose you child to their mental illness.
After that, you are just the walking dead.
Thousands of families out there are clinging to the flotsam of society, trying to hold on, hoping the large ships are coming.
Except they aren’t. According to the Kaiser Family Foundation, in 1985 inpatient care accounted for 42% of mental health expenditures, the majority, with outpatient at 24%, residential 22%, and prescription drugs 7%. By 2005, inpatient was no longer the majority, down to 19% while outpatient increased to 33%, residential down to 14% and prescription drugs up to 27% (numbers courtesy of Sarah Kliff at the Washington Post via SAMSHA’s own estimations).
Well, you might say, that’s good right? The increase in prescription drug treatment has lowered the rate of inpatient, right?
Except the numbers don’t match.
The 1985 numbers add up to 95%. The 2005 numbers add up to 93%.
In polling, they would call that being “within the margin of error.” Except we aren’t polling. We are talking about people.
In 1985 there was 5% not accounted for. By 2005, that number had grown to 7%. The upshot is that the mental health “system” serves fewer people today than it did in 1985. But you knew that.
Now realize we are using numbers of adults. These percentages do not include children. No one to date has actually researched the number of children within the mental health system and what kind of care they get.
And the reduction of inpatient care is not because people have gotten better, at least not in the case of children. It is because inpatient care is by far the most expensive mental health treatment there is. Outpatient allows psychiatrists to see more patients for the pittance the insurance companies or Medicaid is willing to pay (assuming they even take Medicaid).
The anti psychiatry crowd sees this as evidence of a “Big Pharma” conspiracy to push drugs.
And you know what?
They are right.
Because the best way to treat severe mental illness in children is not through trying untested medications on an outpatient patient prescribed by a doctor that will see your child anywhere from fifteen minutes to not at all.
Medications are the best available treatment we have but they stop working. Symptoms get worse.
If you want to treat a disease, you have to treat it where they ACTUALLY TREAT DISEASES.
In a hospital setting.
Everything else, the stigma, laughable advertising concepts of depression (Oh, there is a cute little hole in the ground following me around and I feel so sad), the reason mentally ill children get charged with felony assault by those charged with teaching them, is because SOCIETY WILL NOT TREAT MENTAL ILLNESS WHERE IT NEEDS TO BE TREATED, WHICH IS IN AN INTENSIVE AND FULLY MEDICAL HOSPITAL SETTING.
No, I am not saying bring back to institutions. Yes, I know everyone believes they warehoused the mentally ill. Actually, they didn’t. You know what they did in mental institutions? They tried to treat the most difficult illnesses on earth to treat. Yes, they didn’t always do it very well but medicine in general is a history of not getting right in the beginning.
What I am saying is that that 42% inpatient from 1985 was not from mental institutions. They were hospital beds with hospital treatment.
Somewhere along the line, we got the idea that mental illness could be treated quickly.
No, it takes a lifetime.
And the “turn and burn” methodology of today’s inpatient is not working. If we want to help kids like Gianni, we have to actually TREAT them. We have to treat their illness to the best of our ability and the best of our ability is inside a hospital where both brain and body can be monitored and treated. We are talking about a Goddamn organ for Christ’s Sake! The Brain. And you want to treat it outpatient?
No, that would be like treating cancer on an outpatient basis, which they will do but not until they stabilize the patient.
The single biggest need of the mentally ill, the single biggest step we can take toward “mental health” is to build lots and lots and lots and lots of inpatient psychiatric beds. And then stop kicking out patients after three days because the insurance company won’t authorize further stays because the patient is not an IMMEDIATE threat to themselves or others. You won’t die of cancer right now, either, but if we don’t treat it aggressively, you will.
Inpatient, inpatient, inpatient. By my estimation and estimation of those far smarter than me, we need about another 200,000 beds, and that’s just for the adults. The United States has less inpatient beds than all other industrialized nations. We have less per capita than the rest of the world COMBINED.
The Jani Foundation is just a lifeboat. You can cling to us for awhile but in the end we can’t save you.
We need a bigger boat. How many are going to have to die until the California comes?
Actually, scratch that. We need a fleet.
And fleets cost a lot of money.
But we better start spending. Because the Jani Foundation lifeboat, like so many others, is drowning under the weight of need.
When signs of cyanosis first appear, such as on the lips or fingers, intervention should be made within 3–5 minutes because a severe hypoxia or severe circulatory failure may have induced the cyanosis.
-From the Wikipedia entry for “Cyanosis,” the condition of bluish coloration on the skin or mucus membranes indicating low oxygen saturation of these membranes-essentially, suffocation.
I had originally intended to write this blog on Monday, January 13th but was sidelined, perhaps ironically, by developing pneumonia. On that day, former Fullerton Police officer Manuel Ramos and former Fullerton Corporal Jay Cicinelli were acquitted of all charges (second degree murder and involuntary manslaughter/excessive use of force, respectively) by an Orange County jury in the death of Kelly Thomas.
Originally, I added “a 37 year old homeless schizophrenic man” but then deleted it. Although true, that addendum to Kelly’s name has become an unintentional “caveat” for his death. It is the only reason I can think of as to why a twelve people could not even convict Ramos and Cicinelli for clear use of excessive force.
No, his name was Kelly Thomas. Nothing else matters except his life was ended by a pile of Fullerton Police officers.
It is probably a good thing I couldn’t write this blog right away. My first version, I am sure, would have spewed rage at both the officers who took his life, fellow Fullerton officers who defended their actions, and the jury. I could not fathom the jury’s decision, since the entire incident was recorded on video and by the officer’s audio recorders. There was no guess work here, no interpretation needed. Originally, I felt that the only way a jury could find Ramos and Cicinelli not guilty of excessive force was if they felt Kelly “got what was coming to him.” In other words, they must have felt Kelly’s actions justified what happened to him.
But that’s not what I am going to do. Instead, I am going to compare Kelly’s actions through out the video with the actions of my schizophrenic daughter, Jani, currently 11 years old. It is my hope that members of the jury and police officers everywhere will read this. Not because I want you to feel guilt or because I am angry with what you did. I just need you to understand what happened the night of July 5th, 2011, through the eyes of a parent with a schizophrenic child.
First, you must watch the video. Many people cannot get through the whole thing. But you have to. You have to watch it, not for the shock of seeing a man beaten to death but to understand how all of Kelly’s actions can be explained by his schizophrenia.
00:25: Officer Ramos is casually swinging his baton. It should not be out unless Ramos believes he is under threat. Based on his swinging of the baton, he does not appear in a defensive stance or ready to use the weapon.
Although the audio is broken, Ramos states “….trying door handles on cars,” apparently accusing Kelly of doing this. Kelly responds, repeatedly “I don’t know what you are talking about.”
Let’s stop right there. Police officers are trained to investigate and so, by nature of their training, they assume every person they question who does not provide an immediate answer to be lying. “I don’t know what you are talking about,” sounds like a lie. Except listen to Kelly’s tone. It is the same tone you would use if I asked you to explain Einstein’s General Theory of Relativity.
I will often ask Jani questions about things that happened hours ago, like “What did you do in school today?” or “Who did you play with at recess?” She cannot immediately answer. Typically, most questions directed at Jani must be asked multiple times to elicit a response. This is because schizophrenia is a thought disorder that interferes with the ability to think clearly. Jani’s mind neither stores information like the rest of us nor can she access it as quickly as the rest of us. Some questions she can answer immediately if she is thinking about it but most require repetition and even then there is no guarantee we will get an answer.
But how do police react to someone who cannot immediately answer a question?
Either they are lying or they are on narcotics.
The more officers have to ask the question, the more annoyed they get and they take this as resistance from the person. Those with mentally ill children know that most questions must be asked multiple times.
Kelly is not resistant because he hands over his backpack to be searched.
In the next minute, Ramos mocks Kelly by asking him what language he wants him to speak in. We don’t know what Kelly said but it might have been something like “I don’t understand what you are saying.” Police officers assume their questions are clear. When Jani is asked multiple questions, she shuts down. She can only handle one question and one answer at a time. After the response, she needs time to process whether her answer was “correct.” If it was, she draws satisfaction from that and takes several moments before she is ready to move on. Rapid fire questions to someone with schizophrenia will draw a frustrated response as new questions come before the previous one can be processed. Want to know what this like? Find someone who speaks a language you are not conversational in and ask them to talk you at natural speed in their native tongue, all while you try to translate in your head. I can read Spanish and I can understand but if the Spanish speaker doesn’t give me time to translate in my head, I rapidly fall behind. It becomes so hopeless I give up and stop attempting to understand.
This is what happens to people with schizophrenia every day and what happened to Kelly.
Kelly keeps asking Ramos what he wants to know and Ramos has changed his question from trying the door handles on cars to mockingly asking him what language Kelly wants him to speak in. Kelly begins to take him literally. By 1:09, Kelly thinks he is in a conversation about languages he speaks, like you would have a conversation over coffee, while Ramos is getting increasingly sarcastic. Kelly does realize Ramos is being sarcastic or hostile.
At 1:24, Ramos points to Officer Wolfe and says “My partner speaks ten different languages.” I assume thinks he is being funny because he still thinks he is dealing with a man who is lying to him. Kelly turns around and says, “I don’t see him.” Wolfe responds, “Right here,” but Kelly does not turn to Wolfe.
This is common in both autism and schizophrenia. Kelly wasn’t lying. He literally didn’t see Wolfe and even once Wolfe acknowledged himself, Kelly did not acknowledge him. This is the hyper-focus on what is in front. Both those with autism and those with schizophrenia struggle to talk to two people at once. Jani cannot have a back and forth conversation.
It is also possible Kelly literally couldn’t see Wolfe due to hallucinations. When you experience hallucinations, it is hard to discern who is real and who is not. It is entirely likely, since Ramos was the one engaging with Kelly, that Wolfe, if Kelly saw him at all, might have been dismissed as a hallucination. We’ll never know.
Ramos then returns to asking about the car doors and Kelly keeps responding “I don’t know what you are talking about.” Ramos is frustrated by a lack of a “yes” or “no” answer but again, this is common for those with schizophrenia. They don’t necessarily see “yes or no” questions as “yes or no.” Kelly can’t answer what he doesn’t know so he repeats “I don’t know what you are talking about.” With Jani, the questions must be specific and repeated and I don’t get a “yes or no.” She doesn’t say “I don’t know what you are talking about,” but she does say, “I don’t know.” Not defiant. Just fact. When most of us don’t have an answer, we default to “no,” as in “No, I didn’t try to break into cars. Jani does not. Partially, this is because she can’t be entirely sure what she did. She has to think about it. When you don’t have a strong grasp on reality, it is hard to answer.
Here, try something.
How many times did you try to break into a car today?
Now, how many times have you been to the bathroom today?
Can you answer that? It gets harder, doesn’t it? Three? Four?
How many times did you cross your living room today? How many times have you passed your dog or cat today? How many times have your children asked you a question? What were you doing at exactly 10:49 this morning?
The fact is that you can’t remember these things because they weren’t significant to you at the time. You could not answer with a “yes or no” because you don’t know. For those with schizophrenia, almost every moment is like trying to remember the mundane. Most moments in the past are foggy. If you are neurotypical and a cop asks you a question, you will rip your brain open to remember. But a cop has no significance to someone with schizophrenia. Jani meets cops all the time but never remembers because they don’t mean anything to her. The badge, the gun. These mean nothing. If you don’t talk to her about what she wants to talk about or play with her, you don’t exist.
Cops are trained to be distant… which is exactly what puts them into conflict with the mentally ill. If you want to be remembered, you have to engage the person in their world. Coming in with a gun and a badge and a taser and a baton means nothing. Those with schizophrenia require you to earn authority through trust and familiarity. Cops, unfortunately, just assume authority because the law gives it.
At around 4:00, Kelly won’t give his first name, saying “I don’t know. I gave up on it.”
Imagine what Jani would do if the police asked her, “Is your name ‘January?'”
How would Ramos have responded to an adult Jani?
We’ll put aside Ramos’s statement “…fucking take him for 496” even though Wolfe, the lead officer, says “Let’s see if [the owner of the mail in Kelly’s backpack] is the victim of theft,” apparently wanting to dispense with due process investigation, followed by the infamous, “See these fists? They’re about to fuck you up,” despite the fact that Kelly is in no way threatening in his behavior.
The conflict starts because Ramos wants Kelly to stick his legs out in front of him and place his hands on his knees. Kelly is unable to comply. This is taken as resistance by Ramos. Unfortunately, this is where thought disorder comes in again. If Jani stubs her toe, she will literally believe she cannot walk. Individuals with schizophrenia do not have the same ability to follow physical directions as their mind dictates what they can do, not their body. Jani will sometimes believe she cannot climb a flight of stairs even though there is nothing physically wrong with her. At 14:45, Ramos begins ordering Kelly to stick his feet out in front of him. The speech is hostile and rapid. It takes Kelly, who had been in his own world for the last several minutes, a few seconds to comply. He does but by 15:38 he is frustrated by what he perceives as Ramos’s changing orders. At 15:39, Ramos, clearly angry, is the first to make contact, placing his hand on Kelly’s shoulder before withdrawing it. Ramos grabs him again at 15:41 and Kelly rises, angry.
Basic rule of dealing with someone in a psychotic state. Do not touch them unless they invite you to. For Kelly, “fight or flight” is beginning to kick in. At 15:45, Wolfe comes around the patrol car with his baton out. Kelly puts up his hands in a surrender motion while backing away. Despite this, Wolfe strikes him in the back of the knees with his baton.
Kelly never struck either officer. Ramos grabbed him twice and Wolfe hit him with the baton even though Kelly was not threatening either officer.
Now begins the most difficult part of the video. Kelly apologizes profusely but the officers won’t relent because he will not go face down. He is tasered five times. He starts calling out to his father.
At 19:30, Cicinelli can be seen repeatedly beating at Kelly’s head with the butt of his taser. At 19:40, Cicinelli says, “He’s on something,” an assertion he will make several more times, including the paramedics.
No, he wasn’t, Mr. Cicinelli. First, cops are trained to get suspects face down even though any one trained in therapeutic restraints knows you don’t do that. You stay off the chest.
Kelly thinks his legs are broken. Remember what I said about Jani thinking her foot is broken? Even if you put aside the severe beating he has gotten, his mind is telling him he has a serious injury and cannot move.
Through minutes 21 and 22, Kelly’s speech becomes slower and more muffled. An officer comments “He is going to sleep.”
No, he was dying. By the 22nd minute, he was repeating only, “Help me.” At 22:46 he mumbles “Help me.”
They are the last words he will ever utter. In the minute following, it is sickly comical that the officers are trying to figure out how to keep restraining Kelly when he has already lost consciousness.
Cicinelli comments, “The problem is he is gonna fight so we gotta get him, really, really good.”
No, I think you’ve already done that.
In minute 24, they notice that Kelly is bleeding a lot. Apparently, after they notice the blood all over themselves. Then they are not sure if he is still breathing.
Now the level of injury becomes apparent. “They hit him in the head. Side of his head.” Cicinelli offers his first defense, saying, “I think it’s him because, I, I, I ran out…we ran out… we ran out of options so I got the end of my taser and I probably…. I just start smashing his face to hell.”
According to the Fullerton Police Department, this is apparently within training. Ramos and Cicinelli’s defense attorney, after their acquittal, said that they were “peace officers” doing what they were trained to do.
“Smashing” someone’s “face to hell” is part of standard police training? This was the police “doing their jobs?”
That’s a scary thought. This is where respect for law enforcement crosses to fear. How can you respect those who are trained to smash your face to hell? Fear them, sure? But trust them?
And that is the problem. How do we trust the police anymore? The weekend before Ramos and Cicinelli were acquitted, an 18 year old boy in North Carolina was shot to death by an officer who allegedly stated “We don’t have time for this.”
Cicinelli continues to tell anyone who will listen in the video that Kelly had to have been “on something” as it took three of them. It actually took six officers to hold him down.
Let’s talk about Bodhi. Bodhi is 45 pounds. When Bodhi goes into self harm, it takes at least three to four full size adults to restrain him. His behaviorists have had to undergo a specific class formed just for those BT’s who work with Bodhi on specifically HOW to restrain Bodhi without hurting him and without letting him hurt himself. One of his respite care workers, a full grown former basketball player told me that Bodhi is harder to restrain than the 24 year autistic adults he works with. The difficultly comes in trying to restrain without harm.
In a psychotic or autistic rage, those that suffer can exhibit superhuman strength.
Because they are fighting for their lives from something inside of them.
If you watch to the end of the video, after the paramedics arrive, you will see why I opened with the mention of cyanosis.
Every action of Kelly was consistent with a person suffering from schizophrenia. He never initiated the violence. He tried to run and he could not physically comply with officers although he was not aggressive or violent. And he died for it.
Ramos and Cicinelli were acquitted. Susan thought people might riot. I didn’t think so. Modern Americans only riot if their team wins a championship.
I stated on the JF Facebook page immediately after the verdict that the police could not be trusted anymore. I took some flack for this, mostly from wives of law enforcement. I get it. You don’t want your husband lumped in with two thugs.
But trust is earned, not given. For too long, police have assumed that they should be respected simply because of their job. Part of it born out of 9/11 and the first responders who died. Part of it is we think we need the police to protect us.
But who protects the mentally ill from the police?
The answer is all of us.
I don’t hate cops. But enough of them have told me that they assume every one they come into contact with is on drugs. Because so many of them are. Drug addiction and mental illness get conflated. But even a drug addict doesn’t deserve to be beaten to death.
I cannot say Ramos and Cicinelli were “just a few bad apples” so many want me to. Because the problem isn’t Ramos and Cicinelli. It’s the Fullerton officers who defended them. The officers who refuse to speak up about abuse are no better than the officers who perpetrate it. If police officers and departments want the people to trust them, they have to stand up and say, “This kind of excessive force will not be tolerated.” They have to stand up and say, “We do not defend these officers or their actions. They are a blight upon our profession. They represent the antithesis of who we are and what we do.” In short, I am asking law enforcement to stop standing up for the brotherhood and stand up for what is right. Stand up for the people you swore to defend with your life. Ramos should have been reported years before for his use of language. Officers must not protect other officers who do not uphold everything that is noble about being a police officer.
Until that time, it is up to us, the people, to watch the police and to let them know we are watching. Yours is a position of trust.
Earn it back.
Right now, I tell my son and daughter to listen to you because I fear what you will do to them. I cannot tell them to trust you.
Susan tells me Jani once spent Christmas inpatient at UCLA. She tells me that I had to take Jani back on December 23rd, which is Susan’s birthday, and she was holding Bodhi and crying.
I don’t remember this. That bothers me. It makes me feel like I can only focus on one child at a time, neglecting whichever one is not in crisis.
It’s funny those that read January First and criticize me for my constant harping on Jani’s IQ of 146 in the first half of the book. No, funny isn’t the right word. I am not sure what the right word is but suffice it to say that there has been a karmic revenge for that. Jani’s current academic skills range between third grade and her actual sixth grade level. Mathematics is the area at grade level, while reading comprehension lags. She struggles with the drawing details from a story. She struggles to hold onto a plot point that occurred on the previous page. Some things stick in her mind and others do not. Pretty much everything I taught her in her early life, pre age five, is gone.
I thought about this tonight as I changed Bodhi’s diaper at UCLA, thinking perhaps a fresh diaper might help him fall asleep. Bodhi turned six years old this month. He can use the toilet but generally will not do it on his own. You have to take him and pull down his pants. Outside the hospital, this has to be done about every hour to avoid him wetting himself and of course the nursing staff are not going to do it that often. Of course, now they are treating him for diaper rash. At six years old. Jani never had diaper rash. I was religious about changing her. I never wanted her to exist with a wet or soiled diaper. No bladder infections either. Whatever my failings as a parent, I at least got that right.
Jani resisted potty training and Susan actually got her to do it at four years old by bribing her with a diaper, of all things. That was the only thing that would work. She was terrified to go without the diaper and that terror drove her to use the toilet in exchange for a diaper. After that, she never had an accident.
Bodhi never cared.
Over the years at UCLA, I have seen older children, severely autistic, in diapers. One, a boy who was twelve, stands out to me the most. I suppose what I am confronting now is that the body will keep growing, with or without the mind. I have a dear friend with a 15 year old daughter who has schizophrenia, among other maladies. She has to wear a diaper when she is on her period because she doesn’t react when she bleeds all over herself. Not that I expect that will happen to Jani. I don’t know how Jani will react but I suspect, given how she freaks out at a thin line of blood from a scratch, it will not be good. Jani is terrified of having loose stool and believes she is having it when she isn’t, even reaching into her pants and pulling out her hand and smelling it. This is despite the fact that her bowl movements are as large and as big as softballs, so much so that I have to get a plastic bag, the same baggies I use for the dogs, and break it into pieces so it will flush.
I have no idea why I am telling you this. Random people I don’t know on the internet criticize me for how I have “portrayed” Jani, telling me she will one day hate me for revealing such things about her to the world. I actually hope they are right because if they are then that means she will have recovered enough to care about her image on a macro scale. That would be a hell of an accomplishment. But she has to get there first. That kind of hatred, non psychotic hatred, requires a type of awareness and reflection that Jani is not yet capable of. Should she ever reach that point, then whatever judgment she renders upon me will be immaterial to what she has achieved by simply getting to that state. That would amount to essentially full recovery from schizophrenia. I guess I would trade her full functioning for her hating me. Seems like a small price to pay to me.
Bodhi, Bodhi, Bodhi. I still find fresh bitemarks on him. And bruises.
It feels like we are going around and around in circles. He has been inpatient for more than a month now, which is starting to feel an awful lot like Jani’s four month stay back in 2009. For two weeks there was no self harm, leading us to focus all our efforts on his environment outside the hospital, as he seemed to do better there. Then, in the third week, it began there, just like it did at home.
Four weeks in, after originally discarding the idea, the doctors wanted to try Adderal, a stimulant used in the treatment of ADHD. Given Jani’s reaction to stimulants, there was no way in hell I was going to try that outpatient. For Jani, Adderal and Ritalin, the first dose was like L-Dopa for Oliver Sacks’ encephalitis lethargica patients. It was a miracle drug. All of her aggression disappeared and she was actively engaged with other children, including carrying for younger ones. She was also happy, happier than I’d seen her since she was a toddler. I didn’t realize at the time being high makes you extremely happy, and stimulants make you high if you are not ADHD. Once the high wore off, she crashed with a ferocious bout of violence, with follow up doses having no effect. So, after two of these crashes and a heart racing so fast I was terrified she would go into cardiac arrest, ADHD was abandoned as a potential diagnosis.
Bodhi hasn’t had that reaction. It has wound him up, which is then followed by what the nurses call a “temper tantrum,” followed by nakedly autistic behavior where he doesn’t engage at all. Doesn’t even acknowledge our presence. Just lines up his cars. When I visit him later in the evening for his bedtime routine, he is back to being alert and engaged.
Some nurses will confess that they can identify no “antecedent” for Bodhi’s “tantrums,” that “most of the time they seem to come out of nowhere.” It has been described to me exactly like this: “One minute he is fine and then the next he is throwing a fit and then the next he is fine again.” Bodhi rarely gets a PRN because he comes out of these “tantrums” as quickly as he went in and there is no remnant that they ever happened except for the imprints of his own teeth on his skin.
Yet they are so confused.
If you replace the self-injurious behavior with aggression toward others, you have Jani. Bodhi’s self harm is lessened by Seroquel, an anti-psychotic that also worked to some extent with Jani from her first hospitalization at BHC Alhambra in March 2008 to December 2008, when she became acutely psychotic again and tried to jump out of her second story bedroom window. Head first. Like she could fly.
Have you ever read Oliver Sacks’ book Awakenings? No, neither have I, although I’ve seen the Robin Williams movie that it is based on. In fact, it was on TV tonight while I was trying to fall asleep in my home with one child missing. I never forgot it the first time I saw it. L-Dopa brought those men and women back to life. But then it stopped working. Catatonic behaviors returned, no matter how much the dose was increased. Anti-psychotics can do the same thing, work for a while and then stop working. Symptoms return and even to this day, doctors still keep increasing the dose in vain, hoping to slow the return of the symptoms. And then you are left changing your son’s diaper and kissing his head and telling him you love him and praying to God that passes for some semblance of a human life.
By the way, anti-psychotics also work on dopamine receptors, although what that has to do with psychotic behavior no one could tell you.
I write sentences like that to try and get away from the pain. What I wrote in the last sentence of the previous paragraph is the true crux of the issue. As a parent of a child with any sort of disability, what eats away at you is the guilt of not knowing whether you are doing enough to offset what the disability takes away. In essence, you want to feel, I want to feel, like Bodhi has some moments of happiness. I want him to feel like there are enough good moments in life that make up for the hell of the rest of it. Bodhi has no suicidal ideation, unlike Jani at that age. Which, by the way, is why I agreed to have Bodhi. Long before there was violence, there was depression. Yes, Jani was starting to act out in public but she wasn’t violent yet. What she seemed was depressed. Try as I might, nothing seemed to wake her up at life. She enjoyed nothing. I don’t know if I can describe what that feels like to see your five year old depressed. You shouldn’t feel like life has nothing left to offer at five years old. I gave her a sibling because it was the only thing that excited her. I did it out of a desperate hope that having a newborn sibling would give her a reason for living.
I am aware that that sounds fucked up now. Maybe you’ve never done anything fucked up for the happiness of your child. I don’t know. All I know is I have.
And I don’t regret it, because I love Bodhi and so does Jani. Now. Now she can be a big sister to him. But that lack of regret is still largely based on my selfish feelings of love for my son. Is he happy? Is he happy being alive? That’s what I want to know and that is what he can’t tell me.
If my children are not happy, and I don’t mean in the moment to moment but happy to be alive, that is the only thing I cannot deal with. It is the only failure that matters and their happiness, their desire to live, is the only success I care about. It’s the only thing I will ever care about. It is why I do everything I do, including the Jani Foundation. I am trying to create enough happy moments to keep pace with the moments of hell that their brains force upon them. Because I want them to keep fighting. Because I can’t ever free them from what they have. As long as they want to live, that is all that matters.
While I was holding Bodhi tonight, rocking him, trying to get him to sleep so I could go home only to come back and do it all over again tomorrow night, I tried to cry. I desperately want to cry. I can feel it but it just won’t come. I sob, but they are dry. It reaches the edge and then dies away, like the memories I have lost.
I know it is a defense mechanism. I want to feel the agony of loss and regret and fear of the future but I can’t because I still have to get Jani and Bodhi to that future. This is what it means, I guess, to advocate for your children. You have to suppress the natural emotions that come with seeing your child in this state so you can argue with the doctors or the school district for what you know they need. You can’t be an emotional wreck. You have to be a fighter because your child isn’t their child. They are never going to fight like you will. They will give up. You won’t.
But I think what bothers me the most, and what I am realizing as I go through this process again, is that it isn’t just the negative emotions that get suppressed. Love gets pushed down there as well, along with the pain and fear. I suppose this is because love causes pain and fear. The root emotion gets pushed down and I become automatic.
I don’t want to be automatic. I want to feel that pain because I want to feel that love, even if it rips me apart for a little while. Should I ever lose either of my children, I want to know that I loved them with every ounce of my being.
Friday, December 13th, 4-7pm at Valencia Barnes & Noble
Come out and meet us and some of the kids the Jani Foundation provides social events for. Use the flyer below in store on 12/13/13 and the Jani Foundation receives 10%. Or you can shop online at BN.COM/bookfairs from 12/13/13‐ 12/18/13 and entering
Bookfair ID# 11245651 at checkout!
The song remains the same… and I am beginning to realize why.
One of the criticisms of our story that bothers me most is the question If you knew there was mental illness in your family, why did you have children? Or the slightly different but essentially the same question: If Jani was mentally ill, why did you decide to have a second child?
I have answered both of these questions before. I don’t like them because the unspoken implication of those questions is out and out eugenics. They question Jani and Bodhi’s right to exist, and by extension, the right of all those afflicted by mental illness to exist. Cancer, heart disease, and diabetes have congenital components but that doesn’t stop those who have the risk from procreating. Partly this is because the cause of procreation is not generally subject to a lot of thought. A man and a woman have sex. Life is created. In other words, not all of us are “planned.” In a post-contraceptive world with seven billion humans, we have the luxury of Monday morning quarterbacking whether we should have “allowed” such life to be created, but the fact remains that such considerations are generally not in the forefront during the act that creates life. And we should be grateful because without that biologically driven randiness from Mom and Dad on a Saturday night none of us would exist. How many of us owe our existence to a couple of glasses of wine, a few beers, and the miscalculation of Mom’s reproductive cycle?
The point is life is tenacious. So questioning the existence of a person after their creation is as pointless as lamenting the rising sun. It’s gonna happen.
And it doesn’t change our responsibility to the living. It’s not an excuse not to help. It gives no moral superiority.
Yeah, that’s right. You are not off the hook because you “decided” not to have children. My children are your children and your children are my children. I am responsible for your children and you are responsible for mine, caused by the simple reality that we share the same society.
But I digress.
I just really, really hate people who are advocate eugenics, even if they don’t realize that is what they are doing.
As I have said before, it is not like mental illness in our respective families was a topic at the dinner table growing up.
Let me ask you this? How much of your family history do you know?
You know Mom and Dad, right?
What you actually know is what you observed growing up. What you know is your perception of your parents as filtered through your young mind that for which the words “depression,” “Mania,” “bipolar,” “schizophrenia,” and even “autism” have no meaning, assuming you even hear them at all. Looking back now, I have no doubt my mother had schizophrenia. But when I was thirteen, she was just “odd.” Then she became a “freak,” and, as I angrily progressed through my teens and much of my twenties, a “psycho bitch.”
It wasn’t until Jani was formally diagnosed, more than a year after Bodhi was born, and a year after her violence began, that I could look back at my mother’s increasingly bizarre behavior through my childhood and see the connection.
After the word “schizophrenia” came up in relation to Jani’s behavior in 2008, I learned from dear old Dad that his cousin, my second cousin, had been diagnosed with schizophrenia. This was not jogged in my father’s memory until, directed by Janis psychiatrist, I asked Dad if there was any history of mental illness in our family. This conversation is recounted in January Firstso I am not going to rehash it here.
By that time, my father was my only connection to my family history. I had lost contact with my mother years earlier. To the best of my knowledge, my maternal grandparents are dead. I was never able to find my maternal uncles on Facebook (If anyone knows a Derek Hall that lived in Melbourne, Australia in the early 80s and has a son, Andrew, and a daughter, Julie, shoot me a note. I am also looking for a Michael Hall, my namesake, who was living in Brisbane in the early 80s and has a daughter, Olivia, as well as a David Hall, who is from Ballina, NSW, lived in Sydney and London in the late 70s/early 80s, and has two daughters who I have no clue what their names are but they would be in their early thirties by now). My paternal grandmother died in 2005. She never got to meet Jani but spoke to her over the phone. My paternal grandfather died in 1994. My father was an only child. I have only vague memories of my paternal great grandmother who died when I was a child. My father doesn’t even remember when his grandfather was born. He died when my Dad was just a kid. I knew almost nothing of my father’s cousins until one of the TV shows on us aired in Australia and my second cousin Bettie Anne reached out to me via the Jani Foundation Facebook page.
You see the problem here?
The Schofield family history is not exactly clear. In fact, it is pretty damn broken. My father says that my grandparents never really talked about the family when he was growing up.
It is the same on Susan’s side. News of Jani’s symptoms and diagnosis triggered, “You know, that reminds me of your second cousin [fill in the blank]” after the fact. There are questions about my father in law’s mental health history and he is still alive.
The point is you only know what people are willing to tell you and what they are willing to tell you is what they are willing to face. Even to this day there is no clear picture of what happened in the Susan’s family in the 1930s and 40s and mine in the 1950s and 60s. Just conjecture based on attempts to connect the behaviors of Jani and Bodhi to their ancestors.
Strangely though, I know every heart attack and bout with cancer in my family. Susan knows everybody who had diabetes in her family.
But this lack of a clear family history of mental illness is just the beginning. This same forgetting of history gets repeated on the macro, societal level as well.
You are here, reading this, because you saw Jani and our family on Oprah, or Dr. Phil, or one of the “Born Schizophrenic” Discovery Health/TLC (in North America) specials. What is that they always say? I don’t actually pay attention but it is something to effect of January is one of the rarest cases of childhood schizophrenia.
In every media appearance we’ve ever done, the “angle” that they always take is to focus on the “rarity.” Why? Because that is what makes for entertaining viewing. We do media to educate and even if the producers have the best of intentions, ultimately reality documentaries or daytime television or even the local news is about one thing: entertainment. They need you to watch. They need the ratings. So they spend their professional lives looking for what is new, rare, and shocking.
Jani’s story, our story, engaged you (assuming you don’t have a mentally ill child and you could directly relate) because you had never seen anything like this before. It was, as I said before, new, rare, and shocking.
But it’s only new to you.
I am six years into this life now, life with first one, now two, severely mentally ill children. Until tonight, I had never seen anyone like Jani or Bodhi on television.
Then I saw Brian in a documentary called Children of Darkness. Perhaps like you felt when you saw Jani on television for the first time, seeing Brian was new, rare, and shocking.
Except Brian shouldn’t be new, rare, and shocking. Neither should Children of Darkness.
Because it was filmed twenty years before Jani was born.
That’s right. Children of Darkness was shown on PBS stations in 1983.
Never heard of it? Don’t feel bad. Neither had I. Apparently, it was nominated for the Oscar for Best Documentary Film in 1983.
Then it faded into obscurity.
Watch it. Go ahead. I recommend watching it when you have 57 minutes to take it in one go, as well as time afterward to process what you have seen. It will level you. It leveled me and I thought I had seen everything there was to see.
At any length, you need to watch it before continuing the reading of this blog. Watch it when you have the time to give it the full attention it deserves and then come back. This blog isn’t going anywhere.
First, how the hell did I not know about this? If you want to know what Jani looked liked during her psychotic episodes, the scene with Brian punching the back seat of the bus in the beginning is exactly the same. If you want to know how Bodhi is doing, I give you the scene at Eastern State School where two people have to hold Brian down because he is trying to pull the dresser over on himself. Combine that with Billy Calhoun’s self-injurious behaviors that require him to be strapped down for all but the three times a day he is made to walk a corridor so his muscles don’t atrophy from being strapped down and you have Bodhi, although Bodhi is not YET as severe as Billy was.
As a side note, it is pretty shocking that they were still considering a lobotomy in the early 80s, isn’t it? If Billy’s self harm continued, that option was on the table.
For six years I have been searching for a history for children like Jani, Bodhi, Maddox, Mari, Briana, Little Brian, Jessica, Katelin, Andrew, and many many others. couldn’t accept that these children were just “rare” (the explanation of the doctors) or “new” (so many ask “Where are these children coming from?”). I couldn’t accept that it was bad parenting. Hell, I am better parent than a lot of parents I know with neurotypical children and I am sure as hell better, as are most parents today of mentally ill children, than our parents were or parents in general were in the 60s, 70s, and 80s. There had to be a history. I knew from Jani’s first social worker at UCLA, now retired, who had started her career at Camarillo State Hospital (now California State University Channel Islands) that there had been children in the state hospitals, but the state hospitals are gone in California and generally non-existent, especially for children, in other states.
I was searching for that history because although I have claimed that there is a history in many prior blogs, I was never able to really prove it. But deeper than that, I needed a history to try and understand how mental health advocacy could have been around for so long yet so little had changed.
Eastern State School and Hospital in Pennsylvania closed in 1995, three years after Camarillo State was closed here in California. Like Camarillo, which also housed children, it was closed in favor of smaller (read “private”) residential facilities like…
…Elan. You watched the segment on Elan. Is that a place you would like to be? Elan is closed but this documentary pretty much substantiates all the claims of abuses that have been leveled against Elan by survivors. I guess in 1981-82 when this was filmed they weren’t concerned about lawsuits. Hell, parents were paying $20,000 (over $51,400 in 2013 dollars) to send their kids there.
Elan may be gone but there are plenty of “residential treatment facilities” like it today. Your local school district contracts with places like that to take your child if their illness is too severe for district based special education.
South Beach Intensive “Care” Unit in New York where the three kids died? Still around, although now it is the South Beach Psychiatric Center and it is no longer a long term facility. Other than mostly private “residentials,” long term psychiatric care no longer exists in America.
South Beach in 1981 reminded me a lot of BHC Alhambra in 2008. Leave your children in their care and you might not get them back alive. Those kinds of full body restraints, the canvas bag, are illegal in California but that is still what they will do to your child if he or she should get sent to a “therapeutic residential” in states like Utah or Wyoming.
And yes, staff still think patients are “faking it” when their eyes roll back in their heads and they go into convulsions. Even within mental health “care” itself, there are still plenty of staff who believe these kids are “choosing” to be this way and there are still plenty of staff like that guy at South Beach who wouldn’t allow himself to see the patients as people.
In short, the marketing has gotten a little more sophisticated but much of mental health care still looks like it did in 1983.
Except for one thing…
The film says that 20,000 children are admitted to state psychiatric hospitals every year (I am assuming this is 1981-1982 numbers). Yet the state psychiatric hospitals are almost all gone.
So where did those kids go?
What happened to them?
What happened to Brian? What happened to Billy?
My research turned up nothing.
The media did not follow them. Oprah was still a few years away but where was Donahue?
Back then 20,000 kids with mental illnesses or autism or “emotional disturbances” entered and exited the state hospitals.
Today, they get flushed through acute psychiatric hospitals, with limited beds and insurance companies breathing down their necks. They get sent to residentials. They struggle through “emotionally disturbed” special ed programs. In almost all states, schools are now charged with providing mental health care.
And so a film that I had never heard of, supported by an organization I had never heard of (then the National Mental Health Association, now Mental Health America), finally gave me my history, allowing me to connect the past to the present. Brian and Billy to Jani and Bodhi.
Thirty years. Almost a third of a century. Most of my life.
And the song remains the same. These kids aren’t “new,” “rare,” or “shocking.” Just new, rare, and shocking to us.
Because we lost our history.
I’ll bet none of the producers of any of our media appearances have ever seen Children of Darkness.
Even worse, I bet most of today’s psychiatrists, nurses, and educators in “emotionally disturbed” programs have ever seen it either.
And that is the problem. No history. No understanding of what happened before. Stories about these children come out and are then forgotten. Decades pass. And then a little blonde girl appears on TV thirty years later and history repeats.
History repeats because the story, the children, don’t stay in your face. And you forget. I don’t blame you. Even I can forget and I live it.
But you know what really scares the hell out of me?
In 2043, will there be another child with severe mental illness on the holographic television that grabs hold of the consciousness of that generation, now in their infancy or early childhood?
Will I be 67 years old, looking sadly at the shock of society about something I have known about for thirty years, just as parents with adult mentally ill children who have been fighting for thirty years look now at Jani and Bodhi and me and Susan?
Will it still be the same?
Will it be “new,” “rare,” and “shocking” to the audience in 2043?
My God. No. It can’t be. I won’t accept that. I will ram these children down your throat over and over again until you help me change what is wrong with the system.
What scares me is that is probably what parents like me said in 1983.
I want to leave you with what Dr. Paul Casadonte said in 1983. What he said then is still true today. We need people to take a more active interest in the mental health system….
This is what we do. We provided a fun and stress free Halloween party with DJ and karaoke to children who have various classifications: mentally ill, “emotionally disturbed” (educational classification), undiagnosed. Every child in this video has some brain based, non-structural (meaning there is nothing physically wrong with the brain) disorder. These are the children we help. These are the children you help. Your support makes events like this possible.
Adam breakdancing at 11:45 in the full video (these kids got mad talent).
The smile on Jonathan’s face at the end of both videos. When I was editing (and it is pretty simple editing, just cuts joined together) I knew that was how I wanted to end. Jonathan’s smile is the reason we do what we do. Please support those smiles and those breakdances! We can only do it again next year, and our other events for the kids, with your continued support.
2008 doesn’t have a specific name in our family, mostly because we don’t like to think about it. It could be the year of violence, the year of darkness, the year of confusion, the year of my apathy. If you have read January First, the seeds of what I do in the climax of the book, which occurs in June 2009, actually began in early 2008.
It was a bad year.
It was also the first full year of Bodhi’s life.
It was the sixth year of Jani’s life and the onset of the worst of her symptoms, or what we would later realize were her symptoms.
It was the year of Jani’s first and second hospitalizations, with the first and second coming four days apart.
2013 is the sixth full year of Bodhi’s life and has been the year of his first, second, third, fourth, and fifth hospitalizations, with three through five ranging in distance from a few hours to six days of each other.
What it feels like right now is the period of April through June of 2008. Jani had just come through two hospitalizations and was not significantly better. There was no agreement about her diagnosis. There were symptoms, but no real consensus on what was causing them.
Just like Bodhi today.
In April of 2008 Jani was released from Loma Linda Behavioral Health Center, her medication largely unchanged, and the direction to us to simply, in essence, “deal with it.”
How I “dealt” with it then was to give no quarter. Jani just needed a “firmer hand,” a father, not a friend (an assessment some readers of January First still appear to have). In other words, she was a “brat” then, as far as Loma Linda was concerned. So for the slightest infraction, I would drag her into her room for a “timeout” and lock the door.
The signs of what Jani actually had were on the wall. Literally. She wrote the names of her “imaginary friends” on the walls of her room. We moved out of that apartment in May 2009, moving into two separate apartments to keep both children with us, but I know those names are still on that wall. I was unable to scrub them off so I know they are still there, buried under subsequent layers of paint. Whoever sleeps in that room now has no idea that behind those walls are the rantings of psychosis.
Now, I am dragging (figuratively, because that is what it feels like) Bodhi into his room for time outs. Of course, this time there is no lock and Bodhi is not left alone. Susan or myself, and usually both of us, are in there with him.
We do it because he is throwing things. He cannot stop. He cannot control his own body. He will open the door to the balcony before I can cross the room to stop him, go out and throw one of his cars over the side onto the street below. Then he will cry that he threw it and want it back. I will bring him back in, while he is screaming that he wants his car back, and lock the door. Not that that stops him. And no, child safety locks don’t work. Let me tell you something about child safety locks. They only work for kids who aren’t sufficiently motivated and therefore don’t need them in the first place. Sheer strength and willpower will defeat any child safety lock.
But I digress.
I try to get outside to get his car before it is crushed by a real car. Sometimes, I get lucky. Tonight I didn’t. His toy van from the movie Cars looked like it had been squeezed between oncoming freight trains. I threw it away before he could see it. He would be devastated.
Jani did the same thing in 2008, destroying the things she loved and then being devastated when she succeeded.
The idea behind getting him into his room is to get him into a smaller space where we can attempt to control his body. Only in there, with fewer distractions, can we try get him out of the state that he has entered.
By the way, we have no idea what sets him off, just like we had no idea what set Jani off in 2008. It is like what Bodhi (or Jani in 2008) wants and what his body will do are two different things. Like there is, in those moments, someone else pulling the strings, driving the muscles.
Once it starts, there is no stopping it. Commands do nothing. Positive reinforcement. Nothing. We try to get him to count to one hundred.
“One, two, three, four…” Bodhi races through the numbers, slurring them, “five, six, seven, eight, nine, AAAHHHHHHHHHHH!” A primal scream and he throws his head back. Luckily, he is on his bed. Or primal scream and he tries to bite his hands. We keep holding him and continue to count through it. Bodhi rejoins the count. “Forty, forty-one, forty-two, forty-three, forty-four, AAAAAHHHHHH!” I am holding his wrists so he can’t get his hands to his mouth so he bites his shoulder. If we are lucky, he mostly gets the sleeves of his shirt. I gently pull the arm being bitten in one direction while gently pulling his other arm in the opposite direction, which forces his head away from his shoulders. Then he bites my hand. Hard.
Here is a lesson should you ever be bitten by anything. Don’t pull. I know your instinct will be to recoil but if you do that only increases the damage. Jaws are pretty strong. The best thing to do is to wait until whatever that is biting you lets go. This prevents tearing of the flesh.
Of course, this means you have to fight your instincts and take the pain.
Do I scream?
Human teeth biting down at full pressure hurt like hell. Of course I scream.
However, once he has successfully bitten down on flesh, either his own or someone else, the biting seems to abate. It is like the compulsion has been relieved. The itch has been scratched.
The sad thing, though, is feeling physical pain from being bitten by Bodhi is the only time I feel fully alive.
Just like in 2008 when Jani used to hit or kick me.
The sharp sensation, the stinging wound after, reminds me that blood still rushes through my veins, that my heart still beats.
The only thing that comes close to that is during a Jani Foundation social event when I see mentally ill kids, many with the kind of weak diagnosis Bodhi has, playing together and having a blast. That’s more healthy, I know.
What makes this like 2008 is that the rest of the time, I feel numb. Dead inside. This is because my entire life is survival again. Get Bodhi through the day to the night and then do it all over again and all over again and all over again until he becomes so bad he has to go back to the hospital.
That is what I felt in 2008. Survive. Get Jani to the end of the day. A few hours down. Then do it all over again. And I believed it would be that way forever.
And when you think that is going to be your life for the foreseeable future, you start to die inside. You stop talking to people because you are too damn tired to explain everything you are going through. You stop sharing your feelings because you have no feelings to share. Life becomes all about functioning. What do you need to function, not just for you but for everybody you are responsible for? What does it take to get from one moment to next, hour to hour? That is as far as you can let yourself think ahead. You have to be safe to plan for the future. Maslow’s Hierarchy of Basic Needs stuff. The future has no meaning because you can only think about surviving.
The psychological toll of that is great. Dullness is my most common emotion. Dullness. The gray depression, not the black depression.
Eventually, you have no idea what would make you happy anymore.
Of course, this is my second time through this so I know more than I did last time. Last time I was in this place, I went looking outside my family for happiness. This time, I already know the grass isn’t any greener on the other side.
Not that I would want to go. I don’t have the energy to climb the fence anyway.
But that’s not really why I don’t want to go. I don’t want to go because as much as I hate this period, the period between the beginning of treatment and the final diagnosis, the period of uncertainty, of not allowing myself to fully believe that Bodhi is experiencing exactly what his older sister went through, there is a difference between 2008 and 2013.
Part of it is Bodhi still doesn’t really talk. His is not conversational so they can’t pin the “brat” tag on him like they did with Jani. This time, he has an older sibling with a severe mental illness. He’s had the early intervention of therapists and behaviorists that Jani never got because she never got an autism diagnosis. He has only ever been hospitalized at UCLA, with doctors and nurses who already knew him because they knew Jani and knew our family, unlike Jani who had to suffer through BHC Alhambra and Loma Linda.
He has an older sister who taught his parents a lot. She taught us how to fight for her, how to advocate for her. In 2008, I was acting against my better instincts, doing what others told me to do. Not this time. This time I am trusting my wife, who is the physical embodiment of my conscious. Or I am trying to.
Yes, Susan is my conscious.
Why do you think I portray her the way I do in the book? Why do you think I got so angry with her?
Don’t you ever get angry at the part of yourself that tells you the truth even though you don’t want to hear it?
Yes, Bodhi, and us, are on the same journey again. But at least this time we know the landmarks.
And what gets me out of the gray depression this time is that I know there will be a future.
Because I have already been there.
I already know what will happen. I already know this set of hospitalizations is just the beginning for Bodhi, that more will come. I already know that the doctors will beat around the bush on a diagnosis until a true crisis happens. Yes, that scares the shit out of me. But to cross that final threshold, there has to be a trigger, the end of the end, or at the beginning of the end so that the end can come. It is the starting of the process of hitting the rock bottom. From December 2007, when I was forced to accept that there was something wrong with Jani, to January 2009, when Jani ran out of her first grade classroom and tried to throw herself through doors and windows, we were falling, as a family, falling, with no bottom in sight. In January 2009, the bottom came into sight. It would take another three months to actually see the bottom and to get out it? That’s a whole other book.
So that is what I am waiting for now.
The bottom to come into sight. I have to have faith that the bottom will not kill Bodhi. I don’t think so because he is young and he got help even earlier and younger than Jani did. He started treatment earlier. He is already in special ed. He is already doing home hospital with the same teacher Jani had. He has supports now she would not get for years.
Of course, this may mean that it will take longer for Bodhi to hit the bottom.
But I still feel it is out there and will be until Bodhi is on the right medications. What is on right now is just slowing the fall, not stopping it.
But we did it once, we can do it again. We turned the tide once. I am not telling you this for your benefit. I’m saying it for me. Remember, I am not really talking to people right now. I have pulled back from my friends. I am withdrawn. This whole blog is my peptalk to me. I know that giving up is not an option. I brought these children into the world. Their happiness is ultimately my responsibility. But the apathy. That is what I have to fight against. The gray depression.
The bottom is coming. I don’t know when we will hit it but I know it is down there somewhere.
I look forward to hitting it.
Because then we can start coming up.
And life can begin again.
Post-script: The Jani Foundation still has a responsibility to provide free social events for the ED “emotionally disturbed” children of the Santa Clarita Valley. We have done three events so far and next Wednesday is our biggest event this year, our “Halloween Rocks!” costume/dance party with live DJ at the Sunset Pointe Room between the Residence and Fairfield Inns in Valencia. The Jani Foundation desperately needs your help to continue to offer these events. We are offering Jani Foundation “Socialization over Isolation” t-shirts for sale here on eBay. We have only a limited number made and will not be making more. Get yours today and the cost, minus postage, goes to pay for our social events. http://www.ebay.com/itm/121186195435?var=&ssPageName=STRK:MESELX:IT&_trksid=p3984.m1555.l2649
Also, the Holiday Season is coming up. Please consider the Jani Foundation for your Holiday Giving. Thank you.
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.
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.
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.
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.
embedded by Embedded Video
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
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:
Behavior Management without punishment
Relations (not sure what they mean by that)
Balancing your needs as a parents vs your child’s needs
Strengthening your Marriage
11. Managing Stress
14. Impulse Control
15. Loss and Grieving
16. Feelings of Unfairness
17. Low Self Esteem
18. Peer Pressure
19. Relationship with Parents
23. Self Downing (not sure what that means, either. Being down on yourself, maybe?)
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.
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 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.
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.