Month: October 2010

Hanging By a Moment (There is Nothing Else)

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?”

 

“No.”

 

“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?”

 

“Oak Hills.”

 

“What day is it?”

 

“Sunday.”

 

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.

 

[video:

100×100]

 

 

Just Follow Me (If You're Trying to Get Out)

On Friday, I was finally able to touch base with Ari Levy, Director of Programs at the Santa Clarita Child & Family Center. This was not for lack of trying on either of our parts. We had been trading voicemails messages for more than a month since Jani’s therapist terminated Jani’s therapy and we were informed that no other therapist at Child & Family was willing to work with Jani.

 

To briefly recap preceding events:

 

In mid-August, I called Dr. Levy wanting a meeting to discuss other things the Child & Family Center could do to help Jani and other children with psychosis, as talk therapy is generally not effective with mentally ill children, at least on the surface. This is because talk therapy is designed to get the child to think about his/her actions and feelings. The problem with schizophrenia or any other mental illness where psychosis is present is that what is discussed or thought about in therapy, when the child is not in a psychotic state, will not carry over into psychosis. During psychosis, the ability to rationally think is overwhelmed by the disordered thinking, meaning that for as long as the psychosis lasts, whatever “tools or strategies” that were taught before go out the window. Second, psychosis is thought, not emotion. Anxiety can and often does trigger psychosis, but any violence or inappropriate actions that occur during psychosis are driven by thoughts, not emotions. Individuals with psychosis do not become violent or self-injurous because of an inability to process emotions. In actuality, the presence of emotions, even negative ones like anger, are a positive sign because they can’t exist during a psychotic episode. Psychosis is like a record getting stuck in a grove. The thought repeats itself and will not let the individual go until something is done to relieve the thought.

 

In a nutshell, talk therapy doesn’t work because it is focuses on the behavior rather than the cause. It also assumes that the patient with psychosis will be able to stop and think about consequences during a psychotic episode, which is impossible because someone in a psychotic state cannot internally shift from the destructive thought. Awareness of consequences requires the patient to be somewhat rational. Without rational thought, talk therapy can’t work.

 

This is why I have come to believe that for patients with psychotic illnesses, an hour or so a week of sitting in therapy talking is ineffective. This is not to say that it has no value at all. It’s value over the long term is that the psychotic child (or adult) can slowly develop a relationship with the therapist, and any relationship with a flesh and blood human helps to counteract the impact of the hallucinations. If Jani hears Calalini all the time, it is incumbent upon us, those in her life, to be louder than Calalini.

 

But developing a meaningful human relationship is not considered a sign of success in treatment. This is because it takes a very long time to achieve (often years) and because it doesn’t “fix” the problems that brought the psychotic child to therapy in the first place. This is the fundamental way in which there is no parity between physical health care and mental health care. If you have an infection, doctors will (hopefully) continue to treat you until they have eliminated the infection, no matter how long that might take. Mental illness, on the other hand, has a cut-off point, enforced by both private insurers and state mental health care agencies. Before Jani’s story became public in the LA Times, twice Blue Shield cut off Jani’s inpatient benefits on the grounds that she was showing “no marked improvement.” I used to compare this to cutting off treatment to a patient with cancer on the grounds that their cancer hadn’t responded to the first round of treatment. I have stopped using this analogy because it doesn’t quite work. First, insurance companies actually do cut off payment for cancer treatments if they, not the doctors, feel the patient has little chance of surviving the cancer. Second, cancer can be a death sentence, particularly if it is located in an area difficult to treat. Not all cancers are created equal. Schizophrenia is perceived by the public as a death sentence, but it isn’t. We cannot cure schizophrenia, but it is well within our means to treat it and manage it well enough that the patient can enjoy a fulfilling life. Every day in this country we pour millions of dollars into prolonging the life of terminally ill patients (and I’m talking about people in their 70s and 80s, even 90s, not children-it is our moral responsibility to do whatever it takes to save the life of the young), to give them a few more months, even weeks, of what has already been a very full life, yet we won’t spend even a fraction of that money to provide a happy and fulfilling life to mentally ill children. Schizophrenia and other severe mental illnesses are not terminal diseases. Instead of spending money to isolate them from society, we could spend much less to give them the support needed to function happily within our society.

 

What I was proposing to Dr. Levy was a new paradigm for psychologists and therapists to work with mentally ill children. The only way the therapist can have ANY impact upon the psychosis is if the therapist is with the child WHEN IT HAPPENS. This means that sitting in an office does no good because a therapist’s office is not the real world. Instead of sitting in the office for an hour, why not go out with the child into the world for an hour? Go to a park? Go to get something to eat? Go to the mall? Go to school? Go anywhere in the real world. First of all, this inserts the therapist into the life of the mentally ill individual in the place that they live. Second, it allows the therapist to be there to help the patient get through stressful events in the real world that can trigger a psychotic episode.

 

I am not saying that the therapist needs to spend 24 hours a day with the patient. Putting aside their need for their own lives, which doesn’t move me that much (I’m sorry, but it doesn’t), it also doesn’t help a child or adult with psychosis deal with the reality that in the real world, people are going to come and go.

 

You want to know why so many parents of mentally ill children resent the mental health care system? Because while the therapist is sitting in her office passing judgment on the parents or offering inane suggestions on how to deal with a situation they know nothing about, the parents are sitting there wondering how they are going to get through the other 23 hours of the day. A child with psychosis, particularly a young child, can never be left alone, because they are never alone in their own heads. I am not saying that if left alone they will hurt themselves, although this is a significant risk. They are not dangerous and need to be watched. What they need is attention from a flesh and blood human being who will interact with them and engage with them so the focus of the child is on the person and not on the hallucination. After medications, the biggest weapon against severe mental illness is eye contact, a soft and soothing voice, time to spend, fun activities, and respect for what they say and do along. You have to want to spend time with these children, because if you don’t, they will pick up on that.

 

What mentally ill children need, once medication has reached the limits of what it can do, is people. You. Me. Anybody who sees these kids as worthwhile. They need people, and unfortunately they need a lot of people, because we are only human and we burn out. You have to keep the mind distracted from the moment they wake up until the moment they go to sleep, every day, for the rest of their lives, and there is no one on earth that can do that alone, although every parent I know of a mentally ill child tries.

 

You got to spend some time with these kids and you have to go to them. They cannot come to you.

 

Parents resent the system because the system makes parents do it all on their own. If you can’t do it all on your own (and no one can), residential is your only other option.

 

I have developed a bit of a reputation amongst other parents of mentally ill children for being opposed to residential treatment. I am actually not. What I have a problem with is that there are two options: limited outpatient care, typically once per week, of talk therapy, or residential. This is like getting a patient with a bladder infection. The first treatment is an outpatient regimen of antibiotics. If that fails, then we go straight to surgically removing the bladder and replacing it with a colostomy bag. I don’t know about you, but I would want to try some other options before they cut a part of my body out.

 

For those of you without mentally ill children, this is the truth: there is nothing between limited talk therapy on an outpatient basis and residential, where the child is removed from the home. It is, without question, the largest gap in health care in America.

 

IDEA (Individuals with Disabilities Education Act) guarantees all students the right to “an appropriate education in the least restrictive environment.” Yet, IDEA is essentially, although not legally, violated everyday because you go straight from outpatient (least restrictive) to residential (most restrictive).

 

We can fill that gap, which is what I was hoping to get Dr. Ari Levy at the Santa Clarita Child & Family Center to sign on to. We can offer additional therapies to fill the day for mentally ill children. How hard is it to offer art therapy? Occupational therapy? Recreational therapy? Equine and other animal therapies? Cooking therapy? Music therapy?

 

All you need is someone willing to teach these classes, plus a few aides (which could easily be psychologists or therapists if they aren’t too egotistical to do it).

 

Would these services benefit Jani only? Not at all. We know many parents of mentally ill children, many of them now in residential, who would bring their kids to such a place, just in the Santa Clarita area. Every one of these parents left the Child & Family Center because they weren’t actually helping, and the Child & Family Center happily let them go because kids like ours screw with their success rates.

 

If you want to have a successful impact upon a mentally ill child, throw out the monthly or quarterly progress reports. Start thinking about a year, five years, ten years. You can make a huge difference in these kids’ lives, but you have to be patient. As a point of disclosure, the State of California Department of Mental Health is now requiring all providers of outpatient services to show evidence that a course of treatment is being effective, with a time deadline of one year. Schizophrenia and other severe mental illnesses are lifetime afflictions. They need support over their entire lifetimes, not for just year. You can’t learn to manage a serious mental illness in a year. Insurance companies are worse. They give only two weeks. Get better or get out. I’d like to see them go down to the Shriner’s Hospital and pull the plug on kids with leukemia because their cancer hasn’t gone away after one year, or two weeks.

 

What do I want from the Santa Clarita Child & Family Center?

 

  1. Get therapists out of their offices and into the community with the kids they treat. You can’t help a child learn to function in our society unless you are willing to go out there with them.
  2. Introduce additional therapies: Offer equine therapy through Carousel Ranch in Agua Dulce. Carousel Ranch provides equine therapy to kids with severe mental and physical disabilities and autism. They are struggling to stay afloat. Child & Family is flush with money, both from DMH and from their private and corporate donors. Set up a program with Gentle Barn in Canyon Country, where kids receiving services through Child & Family can go once a week and feed the horses, pigs, donkeys, and chickens, along with other caretaking duties. Offer art therapy, with an art therapist who is trained to work with mentally ill/autistic children (they could probably set this up with help from the Saugus and Newhall School districts. Offer music therapy (Resnick at UCLA has a music therapist). Find a local restaurant that would be willing to open its kitchen with a cook that would teach an hour a week of cooking class (I am sure there are dozens of local restaurants that would be willing to do this).
  3. Have therapists go along to meet the kids at these therapy sites so that the children/teens can receive therapy as they are actually functioning in the real world.

 

That’s it. That’s all I want from them. I don’t think it is too difficult. I would do it myself but I don’t have Child & Family’s deep pockets. Child & Family Center could establish itself as the foremost outpatient treatment facility for childhood mental illness in America. By following my suggestions, they could create a model that could replicated all across the country.

 

All it takes is the will.

 

All of this is what I wanted from Dr. Levy back in August when I first called him. Unfortunately, I obviously didn’t articulate my desires as well as I should, because he came into Jani’s IEP wanting to cut her therapy from three days a week to one. In the same IEP, Jani’s therapist told us that she felt Jani wasn’t getting any better, which contradicted everything she had been telling us in our sessions. Dr. Levy later admitted that Jani’s therapist had been afraid to be honest with us. Afraid? Why? Okay, yes on occasion she would bring up residential, which we always refused. So was that it, then? Was that what she always believed Jani needed? Is it really that she afraid to be honest with us or that she simply couldn’t get us to accept residential?

 

Who knows?

 

I was hurt. I felt betrayed by this woman. So I blogged about it. In my blog I do sometimes name names. I do this because I am hoping if I drag you into the public eye, you will rise to the challenge and do a better job. This is what happened with the Newhall School District. No matter how many times the director of pupil services may have felt hurt by my statements, he never gave up on Jani and never stopped working with us. He came back each time determined to do better, even though he felt that my criticisms were not founded. He understood that I was coming at this as a parent and that if I was criticizing the district it meant they needed to show me and Susan what they were trying to do. I respect that. I respect those who can take a licking, even if they perceive it as unfair, and rise above it to make it right.

 

Jani’s therapist didn’t do that, however. She cut Jani off because she didn’t want to work with us. On her part, this was a short-sighted decision because it led to me mentioning her more in my blogs. At this point, it might be advisable for her to stay with Child & Family because I don’t know how she would do in private practice. Of course, not everybody reads my blog and it is, after all, just my opinion. But I wouldn’t want my child working with a therapist who cut another child off. But that’s just me. I just think that cutting off a therapeutic relationship with a child is pretty despicable.

 

Dr. Levy mentioned that he had asked other therapists if they would take on Jani’s case. They all said no. Dr. Levy, to his credit, actually did try to force the issue, reminding said therapists that they do in fact work for a state contracted agency and are obligated under law to provide therapy to Jani. One apparently asked him for a pen to sign his/her letter of resignation. Dr. Levy backed down.

 

I honestly can’t say what I would have done in his position. Part of me, the father in me, would have taken that resignation. Even more, I would have fired any therapist not willing to work with Jani just because her parents might mention them in a blog or on Bipolar Nation Radio. I have never attacked any one in this blog personally and I have only discussed their actions relative to their professional conduct, which is not protected under privacy laws. Have I been wrong sometimes? You bet. I do not position this blog as the truth. The disclaimer above says it is based on my emotional response. This is my truth. And when I have been wrong, I have always and will continue to apologize, as I did to Dr. Fine and the Newhall School District.

 

My feeling, and this is just my feeling, is that if you are afraid that your work with Jani might become public, then you have something to hide. If you don’t have anything to hide, if you are confident and understanding, then you have nothing to worry about. But if I have to keep my mouth shut or else Jani won’t receive treatment, then I have no way to protect Jani, do I? I have no other way to alert other parents of mentally ill and autistic spectrum kids to what can and might be happening to their children. Your private life is private and off-limits to me but your public life is public. Hell, you can go to ratemyprofessor.com and read all about my professional life. Is it all accurate? No, of course not. Some students are going to give me a bad review simply because of the grade they earned in my class. But I still have to take it because I have no expectation of privacy as a teacher. Anything I say in my classes can go anywhere. Hell, everything I’ve ever written in this blog or my old blog has been dissected and picked apart. Criticism comes with the territory.

 

So part of me thinks that if you are not willing to work with a mentally ill child simply because your name might get mentioned in a public forum, then you are a coward and you don’t care enough about the children you work with to put your reputation on the line.

 

But I also understand that Dr. Levy can’t exactly fire and replace all fifty of his therapists, if for no other reason than it would interfere with the treatment of other children. I have yet to hear from anyone who is happy with the service they got from Child & Family but that doesn’t mean they aren’t out there. Maybe I am only hearing from the ones who had severely mentally ill kids like mine.

 

But like it or not, the paradigm is shifting. The days where therapists can sit in their offices and talk at their patients for an hour is coming to an end, for the simple fact it doesn’t work. Of course, this will probably cause the State to cut off all outpatient funding, which would be a mistake. Outpatient therapy works. It just needs to be expanded into the lives of those the therapist claims to want to help.

 

Jani has been out of the hospital now for four months, her longest stretch out of inpatient care since she first went to UCLA in January 2009. When I mentioned this to Dr. Levy, he asked me what I attributed this to. I think he was surprised that Jani didn’t nosedive back into the hospital after her therapy was cut off. However, no one is more surprised by that than me. But I sensed he wanted to know if I was trying to bend the facts a bit to make it look like Jani really didn’t need residential.

 

No. I don’t lie. Even when it gets me into trouble.

 

I told him that I feel part of it is that Jani is getting older. She is maturing and with that maturity she is learning to better manage her illness. Jani will tell us when the hallucinations are bothering us. She will even tell us when she needs an extra Thorazine. I think she is coming to a comfortable balance between her world and ours.

 

The second factor, I told him, is that we spend every day trying to get Jani the stimulation that will help distract her. She has horse therapy twice a week and afterward we both work scooping manure and cleaning out water troughs. She cooks with me (cooking class), where we make cakes, pies, homemade bread, and Jani’s completely homemade spaghetti sauce (we even mash up fresh tomatoes). I am teaching her the major scales on the piano. Basically, Jani is back to what she was like as a infant: needing constant stimulation.

 

It is exhausting, but we are doing it.

 

The only times we start to lose her is when I have to go teach.

 

So the answer, Mr. Levy, is two-fold: One, Jani is getting stronger and more mature.

 

And two….

 

We, her parents, are working our asses off.

 

 

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