Since Jani was first hospitalized at UCLA’s Resnick Neuropsychiatric Hospital in January of 2009, and once the diagnosis of child-onset schizophrenia was made in March 2009, there have been three options. These are essentially the same two options presented to any parents of a child with a psychotic illness (assuming that they live in an area where these two options are available).
The first is a residential treatment center. Jani needed what is called a “Level 14” facility. A level 14 is a locked facility where a child is monitored and supervised (theoretically) 24 hours a day. UCLA and all other acute inpatient hospitals are level 14, not just because the facility is locked but because the child can have, if necessary, a 1:1 at all times. Level 12 facilities do not provide one to one engagement and supervision. All use a behavior modification system, where bad “behavior” is punished and good “behavior” is rewarded. They claim to teach behavior cognition, but even if they do, such a system does not work for children suffering from psychosis because psychosis is a thought disorder, not an inability to regulate emotions. The primary symptom of psychosis is irrational thinking, when the brain gets stuck in a “though loop,” a paranoid or destructive thought that repeats over and over like a record stuck in a groove. Since behavior modification asks the patient to “think” about the consequences of his/her actions, and the psychotic child cannot think rationally, the child ends up being punished over and over again for things they cannot control. You cannot “punish” a child out of psychosis, even though that is often our natural instinct. Psychotic children know the difference between right and wrong. That isn’t their problem. Their problem is that when psychosis comes it the “consequences” established by us, their caretakers, pale in comparison to the consequences of not following through on the thought compulsion. Whatever is in their mind is worse than any consequence we could inflict.
Residential treatment centers were designed to deal with external triggers for “bad behavior,” be it drugs and alcohol (still what most RTCs focus on) or a family environment that for whatever reason, perhaps abuse, failed to inculcate the child with traditional social values. This is probably why RTCs believe that removing the child from the home is beneficial. Either the home is the source of the behavior or the home is “enabling” the behavior.
When deinstitutionalizion happened and the state-run mental health hospitals were closed, the responsibility of providing mental health care services fell back to local communities. Unfortunately, beyond a lack of funding, the other thing that we all forgot was to design a model for treating people with psychotic mental illnesses. In fact, such a model never existed. In the past, psychotic children and adults were institutionalized, and the original model (certainly prior to development of Thorazine) was not to treat but to isolate the patient from society. So when the hospitals closed and care was shifted back to communities, they had no model for care. So they defaulted to the closest thing they had: 12-step programs.
Don’t believe me?
In any “behavioral health” program, it sounds an awful lot like Alcoholics Anonymous: Admit the problems you have, make amends to those you have “injured,” and develop a plan for not doing it again. Of course I am vastly simplifying the 12-step process, but that’s essentially what it is. “Parental support groups” or “parental training” sounds an awful lot like Al-Anon. Al-Anon, for loved ones of addicts, is all about getting the parents to set limits, draw lines, stop enabling, and get tougher. The only difference is that Al-Anon preaches that parents are not at fault for their child’s drug addiction while “parental support” for parents of mentally ill is still quite happy to blame the parents.
So the upshot is that residential facilities treat psychotic kids the same way they treat drug addiction. They push and punish the child through use of consequences to accept the rule system, ignoring the fact that psychotic children already know the damn rules. They know what they are doing is wrong. Why do you think so many of them commit suicide?
A psychotic child is not a drug addict. They didn’t decide to “try” psychosis one day at a party. They weren’t pressured into it by peers. They were born with it. For whatever reason, their brains “misfire” from time to time.
The irony is that I feel drug addiction is a symptom of underlying mental illness, a form of self-medicating.
The reason 12-step programs work, the only reason that they work, is because of the sponsor and the sense of community. As an alcoholic, you are surrounded by others who will not judge you because they have been there. And you have a sponsor who will be there for you no matter what..
Psychotic kids need sponsors, too. Unfortunately, they can’t call their sponsor, so their sponsor has to be there 24 hours day, something no single person can do.
The more friendly cousin of the RTC is the Therapeutic Boarding School or TBS (very funny), although the terms are used interchangeably and most mentally ill kids whose parents tell me they are in an RTC are actually in a TBS. RTCs can’t do anything for a mentally ill child as their focus is on “correcting” a behavior. A TBS’s focus is on emotional and academic “recovery” using long-term psychological, emotional, behavioral, and familial development. Their model is the major theories of cognitive and emotional development, using things like Maslow’s Hierarchy of Needs and Erikson’s Stages of Development.
Or so they say. It really all comes down to the day to day staff and how much they give a damn.
Nonetheless, there is still a fatal flaw in the TBS system: You can’t “recover” from mental illness. You can learn to manage it and indeed have quite a fulfilling life, but it ain’t never gonna go away. It’s like having a congenital heart defect. You can manage it but you can never cure it, not unless you get a new heart… and we can’t transplant a brain. Not that I would want to. To do so would be destroy all the wonderful qualities each of these kids has, no matter how violent they might be. My online support group is not a group of parents complaining about their children. They never do that. They complain about the system that leaves them with no help, but I have never once heard any of them complain about their child or children. Sometimes there will be a rant about what they are going through and all of a sudden they will say something funny that their child does, something that makes them laugh. What setting up my support group has taught me is not just the problems that parents of mentally ill children face. More than anything, it has taught me how incredible these children are: their intelligence, their sense of humor, their compassion. Every single one of them who is in residential is there either to save their life or to save the life of a sibling. I have seen parents cry and laugh at the same time, thinking of a happy memory. They do have them. Raising a mentally ill child is not an endless nightmare. Maybe we experience more pain than those of you with neurotypical children. Maybe we have to make choices you couldn’t make. But I believe we also get to experience moments of joy you may never know. Every parent of a mentally ill child knows what it is like when your child looks at you and smiles, their eyes shining, or you see them laugh with joy. In that moment, you know your child, at least for that moment, is free.
That laugh. That smile. For a few minutes or an hour, they wipe away all the hell that came before and all the hell that is still to come. Those are the moments we live for.
My last blog was about what I believe needs to exist between outpatient and residential, because if you don’t go residential, you have only one other option.
Go it alone.
That is the choice. Send your child to residential, often out of state, or deal with your mentally ill child entirely on your own.
Once UCLA realized and accepted that we would not place Jani in residential, the doctors knew what they had to do. They had to prepare us to go it alone. This is what Dr. DeAntonio told me:
“You can’t read too much into anything. When Jani has a good day, just look at it as a good day. When she has a bad day, just look at it as a bad day. Don’t have expectations for how she will act tomorrow based on how she acted today.”
He told me that when I was in the pits of despair, when Jani was lying at our feet in the hallway of the hospital, screaming and kicking out because she thought she had missed going to the deck. I remember being stunned by his demeanor. How could he not react to a screaming, psychotic child literally at his feet? Was he made of ice?
No, he isn’t. At the time, Jani had just started clozapine, and I was looking for any sign whether it was working or not working. It took me nearly another year to get what he was really trying to tell me: If you don’t live in the moment, this will kill you.
He wasn’t reacting not because he didn’t care. He wasn’t reacting because he knew that five minutes earlier Jani had been fine and in five minutes she would be fine again. And she was.
The biggest lesson the UCLA doctors tried to teach me is: Don’t be scared. If you are going to keep her with her, you have to get over the fear.
In my last blog, I wrote about how Jani has been out of the hospital for four months, her longest stretch since she first went to UCLA in January of 2009. She has been doing well, through the collective efforts of the Newhall School District, us, and a few other incredible people who get her and us through the day. I know that the nature of psychosis is that it can return at any time, and it can return with a vengeance, with no warning. Yet it still always takes me by surprise when it happens. I knew Jani’s psychosis could return. In fact, I knew it would return. But after such a long period of relative stability, I had started to forget what was most important. I had started to worry about the little things again, like not having any money. As I write this, I have six dollars in my wallet. That is all the money I have. My checking account and savings account are empty. I did buy food before I ran out of money so we are not going to starve, but I won’t be able to pay rent (again) for both apartments. I am teaching three classes at CSUN, but that gives me only enough to pay for one apartment. Last month I cashed out my 504 retirement account, three grand after taxes. It’s all gone, used to pay rent, car insurance, cell phone (which was a couple months overdue), electric bill for two apartments, gas bill for two apartments, Bodhi’s preschool, food, gas, shampoo, soap, laundry detergent, etc. I have no accounts left to mine. I can’t access my CALPERS retirement unless I quit CSUN, which I can’t do because then I will lose our health insurance (not to mention the little bit of money I get).
So I started talking off-handedly about working more, since Jani seemed to be doing well. I figured maybe I could go back to doing some of things I used to do, like writing test scoring at CSUN on Saturdays which pays a few hundred. Maybe I could pick up extra classes at College of the Canyons.
Maybe Jani didn’t need me as much. We had reached the point where Susan could take both Bodhi and Jani without worrying about her hurting him.
I even started talking about us moving back into one apartment again, a three bedroom, reuniting the family under one roof. Originally I was going to give it another year until Bodhi was four, but I was starting think maybe we didn’t need the two apartments any more (which primarily what kills us financially).
Jani didn’t say anything while I was mentioning this.
Sunday morning was a struggle right from the start. She was very impulsive, running out of her apartment, running into the street, running (literally) into people like they weren’t there.
A couple of days ago Susan’s mother gave her a couple of hundred bucks. After gas in the car, Jani’s meds, and food, it was gone. All through Sunday I was panicking over money, but I was doing my best to keep it inside. It isn’t just the bills. I need money for Jani’s equine therapies. I need money to take Jani places that keep her stimulated and engaged. She cannot just sit home. She needs to be out and doing things all the time to keep her hallucinations at bay. This requires money. I started asking the two different groups that provide her horse therapy if I could barter labor for Jani’s therapy. On Sunday, when Jani kept coming up to me and wanting me to play with her, I kept putting her off, talking to a friend’s fiancé about things I could do for him to make some money. I was so focused on the need to get money for Jani and our bills that I was ignoring the very person I needed the money for.
By late Sunday afternoon, I was starting to get a bit irrational. I’d eaten breakfast that morning but suddenly I felt like I was starving. Instead of going through a drive-thru, I pushed it because I wanted to save what little money I had left. I went to the store to buy things for dinner. My debit card got declined (Bank of America no longer lets you go over your balance) in the check-out line, forcing me to return several items while a line formed behind me so I could get the total down under what was left in my account. I was mortified, even though this has happened to me before since we had the two apartments and B of A changed their overdraft policies. By the time I got back to the car with Susan, Jani, and Bodhi, I couldn’t keep my panic in anymore. I started talking about how we are going to starve, how we will get evicted because I can’t pay November rent, how the TV and internet will soon be shut off because I haven’t paid AT&T. I knew everything I was saying was affecting Jani. I knew I should stop. I desperately wanted to be like Susan, who seems to be able to deal better with having no money. But I was losing control of myself in my fear, even though there was a time, not that long ago, when all I cared about was Jani being okay. If Jani was okay, not having money was the least of my concerns. There was a time when I thought Jani was going to die and I wanted for her to be with us. Somehow, I forgot that. I forgot that once all I wanted was to hold Jani in my arms and for her to stay alive so I could keep holding her. I forgot that God and everybody who He works through have helped to give me my daughter back from a disease that one year ago I truly thought would kill her before she reached adulthood.
I popped two Klonapin and managed to calm down. I stuffed my face with White Castle hamburgers, eating a whole box in two minutes. I started making dinner for Jani (mac n’cheese) and Susan’s dinner (pasta with olive oil, red bell peppers, and onions). Susan thought that Bodhi had a poopy coming so she put him on the potty. Then she walked out to get his pajamas.
Jani was next to me in the kitchen as I was cooking. I heard her say “I need to go to the potty.” I told her Bodhi was on the potty (we were in Bodhi’s apartment-only one bathroom). Jani started heading for the bathroom. I registered this and knew Susan wasn’t there, but I didn’t move. I was still hungry, still stuffing my face.
I hear a crash and Bodhi starts crying. I register this but I still don’t move. Bodhi cries whenever he doesn’t get what he wants and I assume Jani pulled him off and he is unhappy about it. And I figured the crash was just Jani dropping his potty seat on the bathroom floor. But my mind isn’t working right. Something was wrong. I knew it was wrong but I couldn’t seem to make myself move. I see Susan go rushing into the bathroom. She screams, “Oh, God! What did you do!” Still I don’t react. It is like I am in some kind of fog. I can’t move. I hear Susan scream at Jani “Get out!” Something is very wrong. Why aren’t I moving? I don’t want to go. I don’t want to run in. I used to be spring-loaded and react like a gun going off, but I suddenly I can’t make myself. I don’t want to deal with it.
Jani comes out, holding Bodhi’s potty seat. She has her psychotic grin on her face. Suddenly, I realize what happened. Jani didn’t just push Bodhi off the toilet. She pulled him off, pulling his potty seat out from underneath him. That means he fell backwards, into the tank, or sideways into either the hard bathtub or the edge of the bathroom counter. Oh, my God! Is he bleeding? Is his skull fractured? Is there a hole punched in the side of his head?
I am finally released. I run into the bathroom, terrified that I am going to see blood, or worse, brain matter. Susan is picking Bodhi up off the bathmat where he fell. I see no blood. I see no bits of flesh on the counter or the bathtub. He is scared, but seems to be okay. But how do I know?
Guilt erupts from me. I wasn’t paying attention. I failed my son. I run back out and grab Jani by the arm and scream at her, “What did you do?!”
How many times in this blog have I written about the need to not get angry when a psychotic child does something wrong? Yelling at a child who is psychotic is the worst thing you can do, but all of that went out the window. Everything I tell you to do, I didn’t do. I grabbed her and I raged at her, screaming at her, enraged at her, treating her like her she was an evil child. But it was me. I was guilty. She can’t control her actions. I can. I should have been there to protect Bodhi and Jani. I failed. I was raging out of my own guilt.
She admitted she had pushed him off the toilet. She said it so matter of factly, without any sense of guilt, that I got even angrier, forgetting everything I just wrote above in this very blog about not punishing a psychotic child, and what I have written before that when in a psychotic state the person doesn’t feel any emotion (the “flat affect.”) I forgot all of that. I was treating her like she was just evil, when I have written blogs before about not believing in evil.
I screamed at her to get out. For a split second, I was about to throw her out: my eight year old daughter. Sense got a hold of me again and I remembered everything I have said to you in my blogs. Feeling like a hypocrite, I started trying to calm down.
“Why did you do that?” I asked her.
“I had to go,” she answered. Now she looked confused.
“But he was on there.”
“I had to go,” she repeated.
“Why didn’t you tell him to get off? Why didn’t you ask me or Mommy to get him off? Do you think pulling him off was a good idea?”
“So why did you do it?”
“I needed to go.”
“If you knew pulling him off was a bad idea, why did you do it?”
“I needed to go.” Jani is looking away, to the right and left of me, while I am interrogating her. Her logic is circular. She is looking around, but for what I don’t know. An answer? I think I see tears in the edges of her eyes. She knows she did something wrong, but has no answer other than the thought she had when she first went to the bathroom.
‘Do you understand you could have killed Bodhi?”
“I had to go.” Her eyes are moving everywhere except across me. I realize I am bullying her, bullying her out of my own sense of guilt.
She runs into the bathroom and throws her arms around Susan, begging not to go back to the hospital.
She was going to stay with Susan and Bodhi while I took our dog Honey out to do her business, but that is no longer an option. She still wants to stay, but she can’t. We won’t let her. She has to come with me. We go up to the local elementary school playing field to let Honey run.
Jani is stuttering. She keeps trying to tell me what “Thirty,” one of her hallucinations, is doing, but repeats “thir… thir…. thir…” over and over again.
Is this EPS from the Thorazine? I give a her a Benadryl but she is still stuttering.
Is this psychosis?
I stand there, wondering if I should take her back to UCLA. The only thing that stops me is my own guilt. I destabilized her. I panicked about money. I talked about moving back under one roof. This is my fault. She is struggling now because of me.
“Jani, where are we?”
“What day is it?”
I am running through the questions psychiatrists ask ER psych consults to determine their sense of reality.
“What did we do today?’
I need to see if she can remember. Loss of memory is a sign of psychosis.
“I could have killed him,” she answers.
I feel like shit. I don’t want her carrying around the guilt that she could have killed Bodhi.
“Jani….” I don’t know what to say.
“You want to play number surgery with me? A five and six are having an eleven.”
“Sure.” I would do anything for you, Jani. I am sorry. I am so sorry. This is my fault.
Suddenly, she smiles. “You want to play garbage shoot?”
Garbage shoot. We haven’t played that in years. It is wear I sit lean down a slide, pretending to fix a garbage shoot, and she comes up behind me and pushes me down. She laughs hysterically.
She was going, but she came back.
She smiled, her real smile, and she laughed.
It was just a moment.
But I need to start being grateful for those moments again.