Month: August 2010

Sleeping Giants & Lying Dogs

In the 1970 film Tora! Tora! Tora!, during the final scene, Japanese Naval Admiral Isoroku Yamamoto, the primary planner of the Japanese attack on Pearl Harbor, says, “I fear all we have done is to awaken a sleeping giant and fill him with a terrible resolve.” The “sleeping giant” is, of course, the United States which Japan has just attacked. The line has become part of American popular culture, probably an attempt to make us as Americans feel that our victory over Imperial Japan was always assured, even though the line did not appear until 1970, 25 years after the end of the war. Still, in 1970, the attack at Pearl Harbor was only 29 years in the past, meaning that most American adults alive then would have still remembered what they felt when news reached the mainland that Pearl Harbor had been attacked. Even 29 years after the fact, Pearl Harbor remained our darkest memory. Every American over thirty could still remember the feelings of powerlessness in the face of the Japanese attack. Even a fictional recreation of an attack in a war that we knew we had won still made audiences feel so low that they needed to feel that vengeance was pre-destined.

 

A similar sentiment was said by President George W. Bush when he visited the site of the World Trade Center attacks on September 14th, 2001. Using a bull-horn, Bush thanked the firefighters and rescuers, some of whom shouted that they couldn’t hear him, the President replied, “I can hear you. The rest of the world hears you. And the people who knocked these buildings down will hear all of us soon.”

 

It was a great, iconic line, especially considering that Bush said it off the cuff. Nine years later, it pales in comparison to Roosevelt’s “Day of Infamy” speech, but only because Bush lacked FDR’s powers of articulation. At the same, it was a rallying cry. None of us had any doubt that Bush meant what he said: he was going to find those that attacked us and exact revenge upon them. It was a reminder that although we might be down now, we will not be down forever. You have hit us hard and made us bleed, but you better start running while we are down because we are not dead and we will eventually get up. And when we get up, we are going to start chasing you. And when we chase you, we will chase you to the ends of the earth until we catch you. And when we catch you, we will make you pay. We will make you feel what we felt.

 

Revenge is a basic human emotion, but we Americans are very good at it. We believe we have certain inalienable rights, and when you strike at us, enjoy your sense of victory. For it is only temporary. No matter how long it takes or how hard the road, we will get our revenge.

 

This is why Yamamoto’s line about waking a sleeping giant is in the Tora! Tora! Tora!

 

There is, however, no historical evidence Yamamoto ever said such a line. Yamamoto had studied at Harvard and had spent time in Washington. He had great fondness for America and Americans. He did not support the idea of war with the United States. When Yamamoto was asked by Prime Minister Fuminaro Konoe six months prior to the attack on Pearl Harbor what he felt the outcome would be of a war with the United States, he said “I shall run wild for six months or a year but I have utterly no confidence for the second or third year.” But that line doesn’t make us feel as good as the “sleeping giant” line. When hurt, we want to feel like those that hurt us haven’t yet seen all of us. We want to stand up like an iceberg emerging from the water, showing the other 90% of us they haven’t seen. It’s pure bravado, of course. We are down. We can’t get up right now. We can’t fight back. We cannot lash out at those who hurt us or those we love.

 

Becomes, sometimes, when you’ve been hurt, bravado is all you have.

 

Last Wednesday, we attended Jani’s most recent IEP. On Wednesday night, I wrote a blog about it, the blog entry prior to this one. On Thursday, we received all call from Jani’s therapist’s office at the Santa Clarita Child & Family Center that she was cancelling her regularly scheduled Friday session with Jani. No explanation was given. Typically, when Jani’s therapist cancels, she either calls me herself, or, if the receptionist calls on her behalf, a reason is given, even if the reason is just “______ had to deal with an emergency or a personal family matter.”

 

This told me all I needed to know about what was coming.

 

The crux of our conflict with the Santa Clarita Child & Family Center is this: ______________, the VP of Programs for the Santa Clarita Child & Family Center, where Jani receives therapy under AB 3632, informed us that he did not feel his agency’s services were benefitting Jani. In other words, she was not improving. His justification for this assessment was Jani’s continued hospitalizations at UCLA over the past year, despite the fact that the number and duration of Jani’s hospital stays has decreased dramatically. In 2009, she was hospitalized five times at UCLA. One of those hospitalizations was from February 21st to June 1st, a duration of more than three months. In 2010, she has been hospitalized four times, in January, March, April, and June. Only the June hospitalization lasted more than one week (the June hospitalization was four weeks).

 

________________ stated that it was the Santa Clarita Child & Family Center’s clinical determination that Jani was not getting any better. When I asked him who made this clinical determination, he said, “I did.  And_________,” Jani’s therapist. This took us completely by surprise. Jani’s therapist had been nothing had had nothing but positive reports in her conversations with us. Even when Jani would have “incidents,” like spilling water on herself while changing the water in the Betta fish bowls in the therapist’s office and, frustrated by not being allowed to strip off her clothes in public, tearing up the live plants in the fishbowls instead, Jani’s therapist would tell us how Jani managed to calm herself down, how she “de-escalated” herself in psychological parlance. Even after the session where Jani tried to cut herself with a serrated piece of metal because she couldn’t wait for her therapy appointment, her therapist reported that she had been “fine” in the session.

 

When I pointed out that Jani’s therapist had never made any such comments to us that Jani was not improving, she attempted to deny this, claiming that she had indeed talked to me about Jani not improving.

 

To us, this appeared very much like a lie. Either Jani’s therapist had been telling us all along what we wanted to hear, downplaying what she really thought, or she was now changing her “assessment” to go along with her boss, sitting right next to her, the latter of which I accused her of.

 

All of this had been initiated because I apparently made the mistake of expressing to ___________, the VP of Programs, my concerns over the level of service provided to Jani by the Santa Clarita Child & Family Center. Rather than do what the Newhall School District has done and attempt to find innovative new solutions to educating Jani despite her schizophrenia, ____________ of the Santa Clarita Child & Family Center decided it would be easier to get rid of Jani than adapt his agency’s services to further aid her growing up with the most serious mental illness known to mankind. Hence, the sudden “clinical determination” that Jani was not improving and was “too severe” for the Child & Family Center to meet her needs.

 

Typically, social services agencies and school districts attempt to deny services on the claim that the child is not severe ENOUGH to warrant their services. Santa Clarita Child & Family didn’t have that option, not with a diagnosis of schizophrenia and eleven hospitalizations since January 2009, so they took the opposite route, claiming that Jani was too severe and her needs could only be met by residential care.

 

The fact that they feel Jani is too severe is not what bothers me. The fact that they either cannot or will not even attempt to meet her needs is not what really bothers me. What angered me, what hurt, was that Jani’s therapist did an about-face in the IEP without warning. What hurt is that I believed that this woman believed in Jani, cared about Jani, even liked Jani, when none of these things were true. I expected her to defend Jani. Instead, she wrote Jani off, leaving her to whatever fate might befall her.

 

Was it really that hard for her, I wonder, to work with Jani this past year?

 

Today, when Susan and Jani arrived for Jani’s therapy appointment, ____________, the VP of Programs was waiting for them. He observed Jani’s session with her therapist for the first time. Jani did extremely well, taking care of the Betta fish as she always does. At the end, Susan asked him for his assessment. He said that he still feels Jani is “too severe” for his agency. Susan asked the same question of another woman was also present. She replied, “I see a little girl playing with fish.” According to Susan, Jani’s therapist seemed the most discombobulated.

 

It is Susan’s assessment, and I agree, that this observation was an attempt to back up the claim that Jani is too severe for the Child & Family Center. They had hoped to see Jani act out, perhaps even become violent. They forget, however, than Jani is a smart cookie. She may have a schizophrenia but she also has a 146IQ. She knew what they were looking for.

 

When I got home from work, Jani told me that she enjoyed playing with _________, the VP of Programs. He had played with her, apparently, and she had enjoyed this.

 

Then he told Susan that the Santa Clarita Child & Family Center was terminating their relationship with Jani, ending her therapy. Jani’s therapist, he said, no longer felt comfortable working with Jani or us.

 

Then he told Jani this.

 

And asked her how she felt about this.

 

I am not a believer in evil, but that is pretty evil, to tell an eight year old mentally ill girl to her face that her therapist doesn’t want to see her anymore.

 

I don’t know what he was expecting. Perhaps he was expecting that Jani would throw a fit, perhaps then justifying the claim that he was trying to make.

 

But all Jani said was, “Can we have the fish?”

 

__________________ then proceeded to tell Susan that Jani’s therapist no longer felt comfortable working with a child whose parents might use her name in a blog or on an internet radio show. He said that all forty-nine other therapists with the Santa Clarita Child & Family Center felt the same way (although I doubt he had time to call all of them and ask).

 

So that’s what it was. They were punishing Jani because I had used their names in my blogs, which obviously they read.

 

In my original draft of my previous blog, I used Jani’s therapist’s name. However, I decided, prior to publishing the blog, to remove her name. I did this because I guessed (correctly, it turns out) that this would push her too far.

 

In my previous blogs, I have named names. Why do I do this? Why I do I threaten Jani’s care by publicly calling out her care providers when I perceive that they are failing her?

 

Very simply, because it shouldn’t matter.

 

I know that no one likes to be publicly criticized. When our story first became public, I got a lot of criticism. Most of my comments on my original blog (now called “Michael’s Old Blog”) were supportive, but some of them were at best critical of me and at worst outright hostile. Many of these critics, to put it kindly, took words from my blog, where I am always brutally honest about my own failings, and used them out of context.  I’ve read horrible things about me. I’ve even received a few death threats from people who feel I am killing Jani by medicating her.

 

My old blog had no way to moderate comments, so I spent a sizable amount of my time deleting attacking emails against me. Sometimes I would answer their accusations, but it didn’t matter what I said. They had their own agenda. For a small minority, I would delete comments only to find them back up again within minutes. It got to the point where I had give my password to a friend so he could also delete hostile comments.

 

At the time, I took these attacks very personally. These people didn’t know me and they didn’t know Jani.

 

When janisjourney.org went up last September, I finally had the means to moderate comments. Perhaps some readers out there will think that I just delete any comment awaiting moderation that criticizes me. Actually, the hostile emails generally just stopped. I suppose that individuals just assumed their comments would never become public and just stopped.

 

If you look around the website, either under the blog entries, or “A Father’s Journey,” or any of the other pages, you will find the occasional hostile or critical comment. That is because I no longer censor my comments. You can spew whatever vitriol you like now and I will allow the comment to go up. First, because of the private online support group for parents of mentally ill/autistic children, I no longer have to worry about keeping this space as a place where parents of mentally ill children can share their own experiences. Second, though, I no longer care what people say about me. It’s become water off a duck’s back. I got used to it and developed a thicker skin. I stopped taking anything negative about me personally.  I have even come to agree with my critics a few times. I can be arrogant. I do tend to generalize the experience of all schizophrenics based on my experiences with children with it. I do have a tendency to focus on the violence, the aspect of schizophrenia that society fears most, something that I have been trying to correct. I am a “neurotypical” who speaks for schizophrenics, and not all individuals with schizophrenia appreciate that. I have had to learn to let them speak for themselves. Please understand that whatever mistakes I have made I have made because I am trying to understand your struggle, because I need to understand your struggle, not just for Jani but also to advocate for mentally ill children like her. We may not always agree, but we want the same thing. I don’t want mentally ill children locked away from society. I want society to accept them for who they are and see the value in who they are. I want the world to understand that just because you are mentally ill doesn’t mean you don’t have value to our society. And like most advocates, I would not have become an advocate had I not been personally affected. I advocate for a segment of society that society generally fears and marginalizes and doesn’t treat with respect. I may not always understand you experience (I don’t think we neurotypicals can) but I will always defend you as human beings deserving of the same rights as everybody else.

 

When I name you in one of my blogs, when I put out who you are and what I feel you are doing to the world, I expect you to get angry. I would. I expect you to take it personally. I expect you to feel hurt, even betrayed, because in your mind you are probably doing the best you can do in a bad situation.

 

But then I expect you to realize that what I really doing is not personally attacking you. I am not calling you names. What I am doing is challenging you to do a better job. I am challenging you to remember that ultimately this is about a child, a child who needs you, and I am her parent, and I will say things in anger, pain, and desperation that you would say if you were in my position.

 

I am challenging you to go above and beyond what you think you can do, because that is my job. It is my job to push for the best life I can for my daughter.

 

Some have seen their name in my blogs and risen to that challenge. Dr. Fine, Director of Pupil Services for the Newhall School District, is a wonderful example of this. I have written things about him that have hurt him personally. I know this because he has told me. But he has also never turned his back on Jani, no matter how angry or frustrated he got with me and Susan. That, dear readers, is a great man. Dr. Fine is a man who as Abraham Lincoln once said, can “appeal to the better angels” of his nature.

 

If I make what I feel are your failures public, and you have the courage and fortitude to come back to the table, still willing to work for the benefit of a child, you earn my respect. This is not to say that Dr. Fine just takes it. He has let me know on more than one occasion when he hasn’t been happy with what I have said about him or the Newhall District in this blog. And I respect that. I don’t expect people to take my criticism. I expect them to answer it by doing a better job, even if that only means pointing out, “Hey, I actually am doing something so shut the hell up, Mr. Schofield.”

 

If you are doing the best you can do, I can accept that. If I don’t feel you are doing the best you can do, then I am going to write about it.

 

I also use real names in my blog because if you have nothing to hide, you should have nothing to worry about. Now perhaps I am wrong about this. By default, I have gotten used to my business being in the public eye, but I realize not everyone is. However, I also believe in transparency. This blog serves as a check against any abuse by the mental health care system.

 

There have been others, too, who have risen to the challenge. Dr. Mark DeAntonio at UCLA, almost every UCLA nurse and staff member who has worked with Jani, Dr. Woodall, Jani’s outpatient psychiatrist. At one time or another, I have dragged them all into this little limelight of my blog. They never like it. I wouldn’t either. But they don’t run away. They challenge me, they argue with me, they even chastise me, but they never run away.

 

Jani’s therapist ran away. I did not use her name in my last blog, so the only person who would have known who I was talking about was her.

 

And she couldn’t take it. In the end, the well-being of a mentally ill child was less important to her than her reputation. And in the end, the well-being of a mentally ill child was less important to the Santa Clarita Child & Family Center than their reputation.

 

Which is kind of silly when you think about it. Because what do they think I am going to do: stop writing? It is kind of like answering “No comment” to a reporter; it only makes you look guilty. Cutting off Jani’s therapy just because I am using names in my blog and discussing how Jani is being treated is really just sticking one’s head in the sand.  All that does is give my readers only my side of the story. All that does is allow me to further damage their reputations.

 

So I can only conclude then that the Santa Clarita Child & Family Center has something to hide. _____________ claims that a clinical determination has been made that Jani is not improving, that she is too severe for them. Where is this clinical determination? What was it based on? Just on the number of Jani’s hospitalizations? Any psychologist worth his or her salt will tell you that an assessment can not be made using only one factor. They will also tell you that an assessment must have some quantifiable data to support any clinical determination. Where is this data?

 

Is the assessment being hastily written now (now that we have made a formal written request for Jani’s files)? You can put any date on a document. How will I know that this assessment, if it even exists, was written BEFORE the IEP?

 

When I delivered the written request to the Child & Family Center main office today, I was told that there would be a 25 cent charge per page. This, in and of itself, is not unusual, but given the look of most of the Child & Family Center’s clientele, a quarter a page for a file possibly hundreds of pages long is a nice deterrent. I informed the receptionist that I believe that in order to charge for a copy of medical files, the agency must notify the client when they first begin services at that agency. She didn’t answer me directly, instead saying, “Well, not many people request their records.”

 

Interesting. I wonder why? I wonder how many children and teens the Child & Family Center has turned their back on in order to artificially inflate their success rate (which I can’t find anywhere, by the way). I wonder how many of those records hold the stories of children and families that have been failed by the Center.

 

By the way, because I know they are reading this, I know of at least three other families who gave up on the Center providing them any help. I also know of a social worker who refuses to refer any of her clients to Santa Clarita Child & Family Center because they are so ineffective.

 

I was also told that certain parts of Jani’s files might be “redacted,” or blacked out. Who the hell do they think they are? The CIA? Why in God’s name would you need to “redact” portions of a child’s outpatient files?

 

The answer is they would block out anything related to me or Susan. So whatever the Santa Clarita Child & Family Center thinks of us will remain classified.

 

Why am I doing this? Why am I expending so much energy on the Santa Clarita Child & Family Center? Why am I fighting what is essentially a proxy war with them at the expense of the main war against Jani’s schizophrenia?

 

Tonight, Jani and I cleaned out the Betta fish bowls. Afterwards, as she took her shower, she said, “Tomorrow, we need to write the fish report.”

 

The fish report.

 

That is what she used to do in her therapy sessions. Jani would write what the fish were doing.

 

She is trying to continue her therapy, even in the absence of her therapist.

 

You can look at that two ways: One, it shows that despite the claims of the Santa Clarita Child & Family Center, she is getting better, learning to do her own therapy. Or, two, she is desperately trying to hang on to an aspect of her life that is now gone.

 

Either way, my heart is broken.

 

Up until this point, I have used______________ in place of names, even though the VP of Programs for the Santa Clarita Child & Family Center is not hard to identify. I did this, not out of the hope that suddenly not using their names would restore Jani’s therapy.

 

No, it is too late for that. What you did was my attack on Pearl Harbor. And I will never forgive you for what you have done to my daughter.

 

But I wanted to explain why I use your names before I actually use your names.

 

Because the world needs to know what you did. How you choose to deal with it is entirely up to you. You can be as angry as you want, but it doesn’t compare to abandoning a child that needed you.

 

I am the sleeping giant. I know you aren’t afraid of me right now. The wealthiest and most influential people in Santa Clarita keep you afloat financially.  Your donor list reads like a who’s who of the Santa Clarita Elite. I know that right now you can ignore me and those donors will keep giving.

 

But I also know you have survived by being the only game in town. On your website, in a message from your CEO Darrell Paulk, there is the following statement:

 

How does the Center manage the likelihood of competing programs and services – provided by nonprofit as well as private sector organizations – coming to the Santa Clarita Valley?

 

It is part of your strategic plan to block any competition against you in the Santa Clarita Valley. That is how you have survived so long without having to improve your services.

 

And this: With many of our key funders and major donors caught in the downturn in the economy, where do we get the financial resources needed to fund the Center’s operations?

 

Essentially, you are running out of money and have no plan to deal with competition. In biological terms, we would say you meet the criteria for extinction.

 

This didn’t start with Jani, and it won’t end with Jani. I want to work with you. I want to help you be the agency that you are capable of being. But I will not let you send children up the river. Just today, while I was there, the police were called. I overheard a therapist saying, “I just don’t know with him anymore!’ So she wanted the Sheriff’s Deputies to take him, whoever “he” is, away.

 

You help children as long as it is convenient for you.

 

I am fighting you, and will continue to fight you, because you can’t throw children away. I am not saying you can help everybody, but it is your responsibility as decent humans to try. These children are mentally ill. They need you to fight for them, for their civil rights.

 

Because that is what this has become. This is a civil rights battle, for the rights of mentally ill children to a life of hope and happiness.

 

 

 

Oh, I never did name names at the Santa Clarita Child & Family Center, did I?

 

 

 

 

 

 

 

Nah…

 

 

You know who you are.

 

And you’re the ones who are going to have to look yourselves in the mirror tomorrow.

 

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75 Cents (Lies)

It is hard to type right now. It is difficult to make my fingers work on the keyboard. I keep hitting the wrong keys. I want to hit a particular key, my mind wants to hit a particular key, perhaps the “a” key far to the left. But I find that my left hand hovers, as if the message from my brain to my left hand fingers is not getting through. Instead, the right hand will take over, hitting keys to the right side of the keyboard that I don’t really want to hit, as if it is confused by the failure of its twin to respond and is trying to make up the difference.

 

The left hand keeps wanting to just shake above the keyboard. I am shaking all over, but the right hand seems to be better able to function in this state.

 

I am not on drugs. I haven’t been drinking. I don’t do either of those things. I can’t because both are an escape route and I cannot escape. Jani is in a prison and I must stay with her.

 

I am not shaking with anger, although I felt a lot of that emotion today. Now it is has mostly spent itself. Anger is a difficult emotion to sustain for any sizable length of time.

 

Maybe the shaking is what is left after the anger is gone. Maybe it is the remnants of the adrenaline coursing through my veins.

 

Today was another of Jani’s IEPs, which stands for “individualized education plan.” Each state has a different name for it but it is requirement under the ADA and IDEA for all students receiving any kind of special education.

 

I’ve been through a lot of these IEPs by now, and I will go through many more. I will continue to go to them until either Jani graduates the K-12 education system or the that same system breaks under the weight of her needs and gives up on her. Despite the fact that federal law requires mentally ill children to receive the “most appropriate education in the least restrictive environment,” for students like Jani with severe mental illnesses, the outcome is usually the latter.

 

You see, for us parents of severely mentally ill children, we do not just have to fight the illness itself, which is hard enough. Susan and I do not just to battle with Jani’s schizophrenia, which everybody, with perhaps the exception of a few internet pundits who have never met Jani, accepts. Nobody denies anymore that Jani is truly ill. Strangely enough, I now find myself missing those days. I think that is because back then, we thought that the diagnosis would open the door to treatment. I never fought for the diagnosis of schizophrenia because I wanted the notoriety of having a child with the rarest and most severe childhood mental illness in the world. It was a means to an end. I thought the diagnosis would open doors for Jani to be treated. I thought that once she had this diagnosis, the system would come to her aid. How could it not? How could it not come to the aid of a child with schizophrenia?

 

It turned out I was wrong. The diagnosis opened no doors for Jani, gave her no better access to therapeutic care.

 

A few days ago I caught up via phone with Shari Roan, the LA Times reporter who first brought Jani’s story to the attention of the world, which led to Oprah, 20/20, and Discovery Health. Collectively, those four media sources combined to send Jani’s story around the world. Even people living in the shadow of Kilimanjaro in Tanzania know of Jani. People from Olathe, Kansas to Jakarta, Indonesia know about Jani. She’s been on the front page of newspapers in Tokyo. She has a Greek fan club; another in South Africa.

 

Shari and I were just talking, catching up, as it had been a few months since we had last spoken. Shari, along with Erica the Oprah producer, are the only media people who have continued to check in with us. As far as I know, there is neither another LA Times piece or another Oprah episode planned. Shari and Erica just call because they care, because they became attached to us and to Jani, and they will still care even when the LA Times goes bankrupt and Oprah signs off the air for the last time.

 

I appreciate that. It makes me feel like they didn’t just use us to get our story. The story is long gone now but it was never the story that mattered to them. It was Jani herself.

 

During my last conversation with Shari, she expressed disappointment that in the year since the original Times story ran, no doors have opened for Jani. Shari had hoped that publicizing Jani’s story would lead to concrete help for us that would make our lives easier. Easier? No. Better, yes, but not in the way that Shari or I expected.

 

Nobody stepped forward to save Jani. Instead, hundreds stepped out of the darkness where they had been hiding in plain sight wanting us to help them. The publication of Jani’s story in its various forms had let them know that they were not alone, that another child like theirs existed.

 

Many things have touched me over the past year. Two particularly spring to mind. The first was a woman who had three dollars in her checking account… and gave us one. One dollar, which after Paypal fees was about seventy -five cents. That seventy-five cents meant more to me than the handful of large donations, because that took sacrifice. Last July we received a ten thousand dollar donation from a foundation I will not name. The representative wanted us to use to money to retain an educational attorney for Jani, but we had already tried that The educational attorney achieved nothing more than we were able to achieve on our own. So I used the money to pay Jani’s outstanding hospital beds. The rest was eaten up by the cost of paying rent on two apartments. About a month later, the representative called me for an update on how the money had been spent, so he could report this to his foundation’s board. I told him. I never heard from him again.

 

In September, I received a one thousand dollar donation with a note attached that asked me not to give up on social services. Things would, it said, be much worse without them.

 

One year later, I think that person, although well-intentioned, was wrong. If they were right, I wouldn’t have needed the thousand dollars in the first place. I wouldn’t have to keep dividing my family between two apartments. Because still to this day, all the Department of Mental Health has to offer is residential placement. All they can do is take Jani away from the only ones who really love her and will fight to the ends of the earth for her.

 

To be fair, it isn’t entirely their fault. The State of California ended all true “day programs” for mentally ill individuals a few years ago. Now there is only one day a week of talk therapy…. Or out of state residential.

 

Nothing in-between. Which essentially means the state is breaking the AB 3632 law that requires the most appropriate education in the LEAST restrictive environment.

 

So why I am I shaking? I am shaking because I have started to realize just how far Susan and I, and every other parent of a severely mentally ill or autistic child who has contacted us and shared their story and joined our online support group, are from the rest of humanity. I am so far beyond that I am losing my ability to live in your world as it is now.

 

Maybe all of us parents of mentally ill children, or autistic children, eventually become like our children. They are isolated, and because we love them and will not abandon them, we become isolated too.

 

For the IEP to even happen today, the Newhall School District had to arrange an aide to take Jani and play with her, for there was nowhere else for her to go. This aide was Jani’s one-to-one last year, and she bonded with Jani and Jani bonded with her.

 

Bodhi was in preschool. We scheduled the IEP on a morning when we knew he would be in preschool.

 

For the last several IEPs, I have noticed a developing seating trend around the conference table. Representatives of the Newhall School District sit on one side, coincidentally the right side, while the representatives of the Department of Mental Health and their contracted agency the Santa Clarita Child & Family sit on the other. The Newhall contingent is large, featuring the district’s Director of Pupil Services, the school principal, the assistant principal, the school psychologist, Jani’s school appointed occupational therapist, and Jani’s teacher from last year. That’s six people, compared to a single representative from the Department of Mental Health, Jani’s therapist through the Santa Clarita Child & Family Center, and this time (at our request), the VP of Programs for the Santa Clarita Child & Family Center.

 

Since the Newhall representatives outnumber the DMH and Santa Clarita Child & Family Center representatives, the Newhall people don’t all fit on the right side of the table, meaning that some stretch around to the left side. Nonetheless, the DMH representative and the Child & Family Center reps always sit together. If we were all friends and all committed to the same goal, would we not be interspersed: duck, goose, duck, goose? Instead, it is all ducks on one side and all geese on the other. It’s like being back in high school and sitting with your clique.

 

Susan and I sit at the end of the table, between the Newhall contingent and the DMH/SC Child & Family contingent. This physical placement is entirely by accident, but it represents what we want. We want the two contingents to work together to keep Jani out of the hospital. However, I have noticed that we seem to sit slightly closer to the Newhall clique. Despite our struggles and frustrations with them in the past, they have still done far more for Jani than DMH/Child & Family Center. DMH always comes to the table with the same thing: recommendation for residential. The Newhall School District has long since accepted that we are not going to take that recommendation and to their credit have worked to think outside of the box and come up with innovative new ideas to provide Jani with the education she is entitled to. So I suppose we feel an unconscious affinity for the Newhall contingent because they have proven themselves willing to try new ideas, developing a truly individual program for Jani rather than trying to force her into one of their existing special education programs.

 

Dr. Fine is the Director of Pupil Services for the Newhall School District. Our relationship with him is complicated. Over the past three years, Susan and I have ping-ponged between viewing him as an adversary and viewing him as an ally. When we perceive that the school district is dragging its feet, we have made him the target of some vitriol. I give him an immense amount of credit that he is a big enough person to not take this personally, although I know this is not always easy. Since our story became public I have been attacked in cyberspace by plenty of people and I know it is no fun to be crucified by people who don’t even know you. Dr. Fine has done a better job than I could have at putting aside his personal reactions to our attacks and focusing on doing what is best for Jani. He is a credit to the Newhall School District. He has become an ally in diplomatically defending our decision to DMH not to put Jani into residential.

 

Overall, the Newhall School District has shown what can be done for mentally ill children when you think outside of the box. The fact that the District will continue to provide Jani what she needs despite budget cuts that are resulting in staff furloughs is a testament to their commitment to Jani. They continue to claim her as one of their own. Over time, our relationship has become something of a family relationship: we may fight from time to time, but there is mutual respect. They respect our commitment to do whatever it takes to get Jani what she needs. If I have hurt or offended Dr. Fine or any other staff of the Newhall School District, I apologize. I am fighting for my daughter’s life and well-being, and it can be difficult to be diplomatic under those circumstances. Dr. Fine understands that and I appreciate that immensely.

 

We didn’t spend much time discussing the District’s plans for Jani, because we already largely knew what they were. Occupational therapy has been a huge success. It has brought back Jani’s love of school. So the plan is to expand it. A teacher at Jani’s school last year who left to teach at another school this year has agreed to drive over after his regular day finishes and teach Jani for an hour three days a week. He didn’t have to do this but he is. He remembers Jani from last year and Jani likes him, so he is willing to do it.

 

It’s gotten to the point where I will, upon hearing this plans, express willingness to drive Jani to other school to make it easier on her teacher, but Dr. Fine shot this down, wanting to keep Jani in a single school setting so as to not disturb her. I am so used to having to bend over backwards to get anything for Jani that it takes some getting used to that the District is increasingly taking on more and more of the burden. It is them, not the Child & Family Center or DMH that is giving us respite.

 

Dr. Fine wanted to hear from DMH. He is well aware of the budget crunch that the district is facing, and he is always looking for outside help, not only because of money but because he knows Jani (and we) need it. Once again, though, all DMH had to say was that their recommendation remains residential.

 

I am used to this by now so it doesn’t faze me. Dr. Fine asks us if DMH could find something geographically closer, would we be interested? “We are always willing to listen,” I answer, which really means “no.” I have no intention of sending Jani to residential because I don’t feel it is necessary. We got the two apartments to protect Bodhi. The DMH woman tells us that Jani needs supervision “beyond what any family can or should be expected to give.” True, but we are doing it. Don’t you see that? We’ve made it a year now. Yes, it is exhausting and yes I know I complain a lot about it on this blog, but we are doing it. We need help in the form of activities for Jani, not residential. It is like having a cold but being told the only cure is cutting off your head.

 

I knew the VP of Programs for the Santa Clarita Child & Family Center was coming. I had asked him to come. I had wanted him to come so Dr. Fine could ask him about any other programs that the Center might be able to offer, because asking Jani’s therapist at Child & Family, who also sits in on these IEPs, has become a waste of time. Not that I expected him to offer anything. I actually expected that he was coming to defend his organization, explaining why they could not meet Jani’s needs on a outpatient basis even though that is what they are contracted with DMH to do. I expected a continuation of the phone conversation that was in this prior blog.

 

To my shock, this is what he said:

 

“I don’t know Jani. All I know is what I’ve read in her file. What I want to say, and what I want on the record, is that I think our services have failed to help Jani.”

 

In the private sector, when a company admits it has failed in some area, it means that it must now figure out how to make it right. When non-profit agencies contracted to state mental health announces they have failed, it means they are giving up. When you don’t pay for a service, and you don’t with a non-profit, they can fail you without the same consequences a private company faces when they fail customers. Non-profit contracted agencies face no consequences because their budget comes from the state. The state is their customer, not the “clients” as they like to call us, and the state is happy as long as the price is right. The Department of Mental Health, which pays for the Santa Clarita Child & Family Center, couldn’t give a damn whether Child & Family is meeting the needs of clients in their district, because if a client leaves, it just means less money DMH has to pay.

 

“It is our clinical determination,” he went on, “that Jani is not improving.”

 

I knew where this was going. I had already been through this before with Blue Shield. If a patient is not improving, they cut authorization for further hospitalization. To use a cancer analogy, if you haven’t responded to chemotherapy within a set time limit, we are going to stop giving you chemo and let you die (which actually does happen).

 

“How can you say that?” I demanded.

 

“Seven hospitalizations in the past year.”

 

“But there have been fewer hospitalizations this year and they have been for a shorter duration!”

 

“She’s still going to the hospital.”

 

I was getting really angry now. “Do you know anything about schizophrenia? It’s a lifetime illness. You don’t just get over it like a cold. Who is making this ‘clinical determination?’”

 

“Me.” This from the guy who had never met Jani. “And her therapist.”

 

I looked at Jani’s therapist, expecting her to talk about the improvements she had seen in Jani, but she stayed silent.

 

‘”You are always saying how well Jani is doing, how she has improved!”

 

“That’s not true, Michael,” she responded in a tone as if I had called her a whore. “I am always telling you how she is struggling.”

 

I couldn’t believe this. My daughter’s therapist was lying through her teeth. No ifs, ands, or buts about it. In every session, she talks about how Jani is doing better. Sometimes, she will say that Jani had an issue, but she worked through it. Just last week we had been working on a goal plan where she had put down a goal was to keep Jani out of the hospital for longer periods. Now she was saying that Jani wasn’t getting any better.

 

Any respect I had for her vanished in that moment. “That’s not what you’ve been saying in the sessions. You are only saying different now because your boss is sitting next to you and you don’t want to contradict him.”

 

“Michael…” she said sternly, like I was her student, but her boss cut her off.

 

“We are an outpatient clinic.”

 

“What does ‘outpatient’ mean?”

 

“It means one day a week.”

 

Ah, so that’s what this was.

 

“You want to stop the three times a week therapy, don’t you?”

 

“Well, yes.”

 

“We have just talked about how dependent Jani is on structure and you want to cut back her therapy because it is costing too much.”

 

“It’s not about money.”

 

“So you just want to give up on her then!” I was furious. I had never yelled like this in an IEP meeting before. Usually it is Susan yelling, not me. I am usually the calm one, the mediator, but I had finally had enough. My daughter’s therapist for the past two years, who just last week had agreed to coordinate her vacations with the Newhall occupational therapist so that both weren’t gone at the same time, was selling Jani out because she didn’t have enough of spine to stand up to her own boss. It made me realize that she’d never really cared about Jani at all. What she cared about going along with the man upstairs, and I’m not talking God.

 

What she doesn’t know is that Susan made an audio recording the day that Jani tried to cut her wrists with a piece of serrated metal in the waiting room of the Child & Family Center. Since Jani’s therapist constantly claims to be clueless to Jani trying to hurt herself, Susan wanted to record what she said. The recording will never see the light of day because it was taken without consent, but I have listened to it, and on it Jani’s therapist says that Jani is doing well and everything was fine once Jani got into the session with her.

Didn’t your mother ever teach you not to lie?

 

Either the therapist was lying to us, trying to downplay Jan’s self-injurious behavior to protect the Child & Family Center who failed to take any action to help Jani, or she was lying to go along with what her boss said. I think it is a combination of both. I think all she cares about is keeping her cushy job with the Child & Family Center and she will sell Jani up the river to do that.

 

I bluntly said, “I want to know if you are going to keep doing the three days a week therapy.” Mr. Levy, VP of Programs, answered, “If we have to, we will.”

 

“You have to. AB3632 requires Jani to receive any services that contribute to her education, and her therapy does.”

 

“Then we will,” he answered evenly, a twinkle in his eye. “You know, I want you to know that I like you.”

 

“Flattery will get you everywhere,” I answered wryly.

 

“No, I mean it. You are most determined, committed, and obviously loving parents I have ever seen.” He stood up and extended his hand.

 

I shook it. Her therapist, I realized, was already out the door. I realized what was happening. Dr. Levy, despite our fighting, respected me. I had battled them as well as any educational attorney or advocate, better even, because I was the father. He had come to realize what the Newhall School District came to realize a long time ago but still needs the occasional reminder: Susan and I aren’t going to just go quietly away. We will fight for Jani, and we will fight for another mentally ill children, until we have no breathe to fight anymore.

 

He was shaking my hand because he acknowledged a worthy adversary, although I am sure he wouldn’t put it like that. Men are like that. We can yell at each other and even come to blows but still respect each other. He respected me for holding my ground and calling his therapist out.

 

I noticed he made no effort to defend her, unlike Dr. Fine who always defends his staff.  I have no doubt that nothing is going to change at Child & Family, but at least they know I won’t kowtow to them.

 

I wonder if Jani’s therapist is thinking about why her boss didn’t defend her to me, even though she went along with the program.

 

My answer to her would be to ask if she has you ever read “Yertle the Turtle” by Dr. Suess?

 

On the far-away island of Sala-ma-Sond,

Yertle the Turtle was king of the pond.

A nice little pond. It was clean. It was neat.

The water was warm. There was plenty to eat.

The turtles had everything turtles might need.

And they were all happy. Quite happy indeed.

 

They were… until Yertle, the king of them all,

Decided the kingdom he ruled was too small.

“I’m ruler”, said Yertle, “of all that I see.

But I don’t see enough. That’s the trouble with me.

With this stone for a throne, I look down on my pond

But I cannot look down on the places beyond.

This throne that I sit on is too, too low down.

It ought to be higher!” he said with a frown.

“If I could sit high, how much greater I’d be!

What a king! I’d be ruler of all that I see!”

 

So Yertle the Turtle King, lifted his hand

And Yertle, the Turtle King, gave a command.

He ordered nine turtles to swim to his stone

And, using these turtles, he built a new throne.

He made each turtle stand on another one’s back

And he piled them all up in a nine-turtle stack.

And then Yertle climbed up. He sat down on the pile.

What a wonderful view! He could see ‘most a mile!

 

“All mine!” Yertle cried. “Oh, the things I now rule!

I’m the king of a cow! And I’m the king of a mule!

I’m the king of a house! And, what’s more, beyond that

I’m the king of a blueberry bush and a cat!

I’m Yertle the Turtle! Oh, marvelous me!

For I am the ruler of all that I see!”

 

And all through the morning, he sat up there high

Saying over and over, “A great king am I!”

Until ‘long about noon. Then he heard a faint sigh.

“What’s that?” snapped the king,and he looked down the stack.

And he saw, at the bottom, a turtle named Mack.

Just a part of his throne. And this plain little turtle

Looked up and he said, “Beg your pardon, King Yertle.

I’ve pains in my back and my shoulders and knees.

How long must we stand here, Your Majesty, please?”

 

“SILENCE!” the King of the Turtles barked back.

“I’m king, and you’re only a turtle named Mack.”

 

“You stay in your place while I sit here and rule.

I’m the king of a cow! And I’m the king of a mule!

I’m the king of a house! And a bush! And a cat!

But that isn’t all. I’ll do better than that!

My throne shall be higher!” his royal voice thundered,

“So pile up more turtles! I want ’bout two hundred!”

 

“Turtles! More turtles!” he bellowed and brayed.

And the turtles ‘way down in the pond were afraid.

They trembled. They shook. But they came. They obeyed.

From all over the pond, they came swimming by dozens.

Whole families of turtles, with uncles and cousins.

And all of them stepped on the head of poor Mack.

One after another, they climbed up the stack.

 

Then Yertle the Turtle was perched up so high,

He could see forty miles from his throne in the sky!

“Hooray!” shouted Yertle. “I’m the king of the trees!

I’m king of the birds! And I’m king of the bees!

I’m king of the butterflies! King of the air!

Ah, me! What a throne! What a wonderful chair!

I’m Yertle the Turtle! Oh, marvelous me!

For I am the ruler of all that I see!”

 

Then again, from below, in the great heavy stack,

Came a groan from that plain little turtle named Mack.

“Your Majesty, please… I don’t like to complain,

But down here below, we are feeling great pain.

I know, up on top you are seeing great sights,

But down here at the bottom we, too, should have rights.

We turtles can’t stand it. Our shells will all crack!

Besides, we need food. We are starving!” groaned Mack.

 

“You hush up your mouth!” howled the mighty King Yertle.

“You’ve no right to talk to the world’s highest turtle.

I rule from the clouds! Over land! Over sea!

There’s nothing, no, NOTHING, that’s higher than me!”

 

But, while he was shouting, he saw with surprise

That the moon of the evening was starting to rise

Up over his head in the darkening skies.

“What’s THAT?” snorted Yertle. “Say, what IS that thing

That dares to be higher than Yertle the King?

I shall not allow it! I’ll go higher still!

I’ll build my throne higher! I can and I will!

I’ll call some more turtles. I’ll stack ‘em to heaven!

I need ’bout five thousand, six hundred and seven!”

 

But, as Yertle, the Turtle King, lifted his hand

And started to order and give the command,

That plain little turtle below in the stack,

That plain little turtle whose name was just Mack,

Decided he’d taken enough. And he had.

And that plain little lad got a bit mad.

And that plain little Mack did a plain little thing.

He burped!

And his burp shook the throne of the king!

 

And Yertle the Turtle, the king of the trees,

The king of the air and the birds and the bees,

The king of a house and a cow and a mule…

Well, that was the end of the Turtle King’s rule!

For Yertle, the King of all Sala-ma-Sond,

Fell off his high throne and fell Plunk! in the pond!

 

And today the great Yertle, that Marvelous he,

Is King of the Mud. That is all he can see.

And the turtles, of course… all the turtles are free

As turtles and, maybe, all creatures should be.

 

 

Who is Yertle in this case? Is it Jani’s schizophrenia? Maybe. Or maybe it is the system. They are both the enemy. And Jani’s therapist is one of the turtles way down in the pond who is scared, who trembles, who shakes, but who comes, who obeys, who stands on the turtles below her (other patients), while other turtles (her bosses) stand on her back.

 

And who is Mack, who keeps trying to remind Yertle that the turtles at the bottom have rights, too? Is it me? Is it Susan? Is the over hundred other parents of mentally ill children who are in my support group? Is it Jani? Is it all the kids out there like her, who are suffering through a horrible illness that would break these therapists in two?

 

We are all the plain little turtles way down in this stack. We are all the plain little turtles whose name is just Mack.

 

That’s why the seventy-five cents means so much to me. It was given by someone who had nothing to give, yet she gave anyway.

 

Seventy-five cents is act of defiance. It means that this woman knew what it meant to give everything in support of something bigger than herself.

 

Seventy-five cents is like Rosa Parks refusing to get up and move to the back of the bus. Parks was just tired, but that small act of defiance changed the United States forever.

 

Every time I post updates on Facebook, I always get expressions of sympathy, which I do appreciate. Often it will be something like “I hope one day things change.”

 

Things do change, and they change because one person decides he or she has taken enough.

 

Jani’s taken enough, and I know your children have to. You and I have taken enough.

 

And we are getting a little bit mad.

 

And we plain little parents of plain little mentally ill children can do a plain little thing, just like Rosa Parks did.

 

 

We can say “no.”

 

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Never Be What is In Your Heart (You and Me Got Plenty of Time)

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I had an interesting dream last night. I don’t often dream anymore, in more ways than one. Human sleep patterns are interesting. There are five stages of human sleep: one, two, three, four, and REM sleep. One and two are light sleep stages. Three and four are deeper, with four being the deepest. At stage four, the heart rate slows dramatically. The alpha brain wave, the wave most active when we are awake, essentially flatlines. Most likely, the alpha wave is our conscious mind and at stage four, we enter true unconsciousness in preparation for REM. However, REM sleep is not restful at all. Heart and respiration increase during REM, accompanied by significant spikes in delta waves. We dream during REM sleep. This is why you feel exhausted when you wake up from an intense dream. You have gone straight from REM back to stage one, bypassing the stages at which the body relaxes again.

 

When I wake up from an intense dream, there is a brief period of time where I am not sure if the dream actually occurred as reality. Yes, I know I am in my bed in whichever apartment I happen to be in, but that doesn’t mean that what I dreamed about didn’t really happen. It takes a few moments for my logical brain to kick in, remember where I was when I lost consciousness (in bed) and conclude that therefore the intense experience I remember must not have happened. All of us have this moment of fact-checking when we first wake up from an intense dream.

 

I imagine that for Jani, this is her entire life experience. Perhaps for her REM continues at the same time as waking sleep (although her 30 second EEG when she was five didn’t show anything unusual, but would they know what to look for?) so Jani is never quite sure if what she remembers actually happened or not. She is always “fact-checking.” Unfortunately, those of us without psychosis can latch upon the last “hard memory” we have, which is usually going to bed. This gives us a baseline of reality with which to compare to experiences that occurred in the gap between going to sleep and waking up. If the last thing I am sure really happened was I lay down in bed and tried to sleep, then it is unlikely that I was actually in Minneapolis airport, trying to find the correct gate for my flight home to Los Angeles (I cannot read in my dreams). I remember being in my bed. Then I remember desperately trying to find my flight home, an experience which felt extremely real. Then I wake up in my bed. Not enough time has passed and I don’t actually remember going to Minneapolis. I just remember being in the airport. So clearly I wasn’t really there.

 

For Jani, there are no fixed points in reality. Jani constantly asks me questions that I have already answered, such as “Is Honey okay?” Yes, Honey is fine. We just took her out three hours ago. But does Jani remember that happening? Jani will ask me if Honey is fine even though she just saw Honey in the other room three minutes ago. Has she forgotten? Us neurotypicals take a sense of linear time for granted, but Jani’s conception of her environment may not be linear. As the hallucinations intrude, they squeeze out the present “real” moment, leaving Jani with unaccounted for gaps in her memory of the day. Jani’s existence may be like a dream for the rest of us. In dreams, we shuttle from place to place instantaneously. One moment we are one place, then we are in another, and since our logical mind is asleep, we don’t question the instability of time and place. The common component of a dream is you just go with it when it happens. Driven entirely by emotion, you react to your dream without questioning the apparent lack of logic in what is happening.

 

Jani is constantly re-emerging from Calalini and having to figure out where she is and what just happened. Hence, the questions as to whether Honey is okay.

 

If you are extremely physically exhausted, your forays into REM sleep will be shorter. You will spend more time in Stage 4 sleep in order to allow your body to regenerate (which it cannot do during REM). Maybe that is why I so rarely remember my dreams.

 

But last night I took Bodhi to bed around 5pm and didn’t wake up again until 5am. I think I slept long enough to allow for REM sleep toward the end of the cycle.

 

And I dreamed.

 

It’s been more than eighteen hours since I had the dream, so much of it has faded. However, what I remember was it featured the woman I very nearly had an affair with over two years ago now. Let’s call her Sarah (not her real name, obviously).

 

Let me provide some context.

 

The real Sarah was a co-worker of mine, a fellow instructor at CSUN. At the time, in late Spring of 2008, Susan and I were emerging from the trauma of Jani’s first two hospitalizations. First the first five years of her life, Jani had never spent a night away from either Susan or myself. Then, suddenly, she was in the hospital because she was so violent and nobody really seemed to know why. When we had first been referred to a psychiatrist, I had been sure that the psychiatrist would be able to pinpoint what was wrong with Jani and direct us how to fix it. And I didn’t go looking for a drug necessarily. I was just looking for an answer, the directions to restore my daughter to who she had been before she became violent. If that answer was me, if it was my fault, I was fine with that. Just tell me what I can do to fix it.

 

But there were no answers. No obvious continual psychological trauma. No physical abnormalities. Nobody broke out the DSM-IV and said “This is what she has.” Maybe bipolar. Maybe ADHD. Maybe some combination of the two. The doctors and therapists really weren’t sure. And believe me, I confessed everything I had done or might have done to cause this. No, no, they said, I don’t think that would cause this.

 

I was used to diagnosis, then treatment. In psychiatry, it’s backwards. You try to treat the symptoms and whatever works then determines the diagnosis (although in Jani’s case she was eventually diagnosed with child-onset schizophrenia because UCLA ran out of any other potential diagnoses).

 

I wanted to know why Jani was violent. I believed it was because she was so unhappy that life didn’t meet her needs. She was brilliant and the world just wasn’t smart enough for her. I believed then that if MIT had come knocking for Jani, she would be fine. She was “Good Will Hunting,” her violence a product of unmeet emotional and intellectual fulfillment. But I couldn’t find anyway to meet what I thought then were her needs. I tried, but even Will Hunting, despite his genius, couldn’t function at MIT. Jani might have been brilliant, but the world belonged to the morons. They set the rules. I feared Jani’s violence toward Bodhi, believing it was because Bodhi had come out into the world her ready to be her intellectual and emotional companion. The violence against me was nothing. I quickly developed a high pain threshold. What bothered me the most was I felt Jani’s violence was coming from her unhappiness, and I couldn’t fix that happiness. The decision to use medications was about trying to help her deal with a world that wasn’t made for her.

 

I wanted the meds to allow Jani to find some joy again in our world, in the things she had once loved. I wanted her to be able to live within the limits set by the morons and not turn into Vincent van Gogh.

 

But they didn’t work and Jani ended up in the hospital. And even there there were no easy answers. It was just keep trying medications, playing with the doses, until they found something that worked. When they couldn’t, the second hospital, Loma Linda, simply encouraged us to get “tougher” with Jani. Not that they took her off her medications, at that time Seroquel and Depakote.

 

Jani returned from two sets up hospitalizations totaling a month in April of 2008, and for awhile it seemed like things were stabilizing. The violent rages dropped from 10-12 per day to 2-3 per day. And I had to become the authoritarian parent, something I had never wanted to be. I was tough on Jani, really tough. When she got violent, I would drag her into her room and lock her in, staying outside, listening to her rage and throw anything in her room not bolted down, telling her she could come out as soon as she calmed down. In an attempt to connect her actions to consequences, she had to tell us why she’d been placed in time-out before she could come out. “Jani, why are you in time-out?”

 

A pause.

 

“Because I screamed.”

 

“Well, yes, but that wasn’t why you had to go in.”

 

Another pause.

 

“I kicked.”

 

“No, that wasn’t it.” I thought at the time that she didn’t want to take responsibility. I thought she knew and she just was avoiding it.

 

“I hit.”

 

“Who’d you hit?”

 

Another pause.

 

“Bodhi.”

 

“No, you didn’t hit, Bodhi. Come on, Jani. What did you do?”

 

It took me months to realize that I had to fill in the blanks for her about what she had done, coaching her like we were doing homework. It took me months more to realize she was running down a list of everything she might have done until she got the right answer. It took me months to realize she wasn’t avoiding the answer because she didn’t want to take responsibility. It took me months to realize that she really didn’t know the answer.

 

It is called “disassociation” and it commonly occurs during psychotic episodes. But I didn’t know that then.

 

But things seemed to be getting better. I believed Jani was “learning” that her actions had consequences, that she couldn’t just do anything.

 

But once I was the authoritarian, I couldn’t be her friend, the one who understood her world. So I was just a father now.

 

Susan and I were so spent from the crisis we had just been through that we had nothing to give to each other. It was all about keeping the kids going.

 

Of course, it always had been, but I guess I believed it would get better. Now, in May of 2008, with the immediate crisis over, all the emotions I had repressed the previous six months came bubbling up and I found myself asking “Is this it? Is this all I have to look forward to, just being the authoritarian parent and trying to keep the household running and teaching?”

 

It is called a “mid-life crisis” but it can happen at any time. It is when you ask yourself, “Is this all there is?” and you can’t see your life getting any better, any different. It will just go on and on and on like this perpetuity.

 

So you start looking for something to look forward to.

 

For men, for me, this became the arms of another woman. Most women aren’t aggressive when they find out you are married. This one had no qualms. If I was unhappy in my marriage, I should get out. Life was too short.

 

This woman made me feel like a teenage boy again. I wanted to spend every second with her. I missed her terribly when she was away. She was the only thing in life I looked forward to.

 

She liked me because I intelligent, fun (or so she thought), and I was younger than her, which probably helped to validate her.

 

But just like I’d done with girls in high school, I was telling her what I thought she wanted to hear. I became more terrified of losing her than losing my wife, and so I suppressed what was really going on inside me, which wasn’t pretty. I had just gone to a place I had never imagined I would ever go. Something had gone terribly wrong with my daughter but it seemed to be partially “fixed” by me being the authoritarian father figure. I had been Jani’s friend, but that wasn’t enough. I felt inadequate and I felt I had become everything I didn’t want to be.

 

“Sarah” and I worked together one morning. I really needed to see her. I needed to feel her touch. What I really needed was to be held. I didn’t want to be an adult. I wanted to be a kid, to be held, to be told that everything would be alright. I never told her this but in truth I was jealous as hell of her teenage son. I wanted a mother, not a lover. I wanted her to stay with me; I needed her to stay with me, but she wouldn’t. She had plans. She told me to “relax” and left with a friend. I went back to my car and broke down crying in the staff parking lot at CSUN. I sobbed for more than thirty minutes. I needed to go home. Susan had both kids. I needed to go home, but I didn’t want to go home because it would be just more of the same. More hell. Sarah was my only escape. So I got out a piece of paper from my briefcase and wrote her a letter. It was not very coherent. I was barely functional. In this letter, I revealed to her what I really was, a huge, gaping, black hole trying to suck her into my internal hell. I left it underneath the windshield wiper of her car.

 

For the next several days, she didn’t talk to me. The flirting emails stopped. Eventually, she admitted that my note had scared her.

 

I am glad it did because it drove her away and prevented me from committing infidelity.

 

For any of my readers with mentally ill or autistic children who are in this place right now, who have someone in your life that you think is going to save you from the despair you feel, do me a favor. Do what I did. Show them who you really are. Reveal the pain and despair that lives inside of you everyday. Because they need to know. They need to know that you are not like them. You may look like them. You may even occasionally act like them. But the truth is you have been scarred forever by your experience and all the passion in the world won’t close that wound. It opened when you found out your child was sick and it will never close.

 

Once you have been where we parents of mentally ill/autistic children have been, you are forever isolated from most of the rest of humanity. They have never felt what you feel everyday, and you will never again feel what they feel.

 

In my dream last night, Sarah returned to my life. Perhaps she had forgiven me for being such a freak. I don’t know. Maybe she really felt something for me after all. At any length, she was back, and once again, I was choosing her, except that this time I wasn’t going to tell Susan. I was going to have a secret affair.

 

In the dream, Sarah asks me for a time when we can get together. And I wanted to get together. I wanted it so bad. But that was were reality entered the dream.

 

Every day that she suggested, I couldn’t do. “How about Thursday?” she said in the dream, “I am free Thursday.”

 

“No, I can’t do Thursday. I have to be with Jani that day.”

 

And it went on like that. She wanted a full day where we could be together, but I couldn’t do it. Even in my dream, I knew there was no one to take Jani. There was no place Jani could go, no person she could spend the day with, where she would be happy and content long enough for me to go fuck another woman.

 

I realized I couldn’t do it. As much as I wanted Sarah, I couldn’t abandon Jani. I had no time for an affair. I reluctantly told Sarah I just couldn’t do it.

 

Then I woke up. Bodhi was lying next to me. It was 4:45 in the morning.

 

Well, shit, I thought to myself, even in my dreams I can’t escape. Even in my dreams, when my logical mind is not functioning, I will not abandon Jani.

 

Then I smiled. So I guess this means that my commitment to Jani is so deep it goes beyond my conscious mind.

 

I know why I had the dream. I am not much of Freudian, but I know I want to escape again. Life has been so hard lately. It is August 22 and I still haven’t been able to pay the rent on Jani’s apartment. This is the deepest into the month we have ever gone without paying the rent on one of the apartments. Right now, the cost of rent keeps increasing with late fees and legal fees as the apartment complex begins the process of eviction. It is coming down the pike now. I don’t know how much longer.

 

If we can make to September 18th, I can cash out my retirement account and use that, but that account only has four grand. It will buy us another month or so (given how far behind we are now). And then what? There is nothing on the horizon. I still teach but because of my need to take care of Jani I still cannot work enough to pay the rent on both apartments.  Every month that we actually manage to pay rent is just delaying the inevitable.

 

But that doesn’t bother me as much as Jani’s struggles. She is trying so, so, so hard to keep from going back to the hospital, not that UCLA seems to want to take her. If they wouldn’t take her when she tried to cut her wrists with a serrated piece of metal in her therapist’s office, I don’t know what else they want? Death? I know it is because they don’t know what else to do. There are no more medications to try and without new meds Blue Shield won’t pay for her stay.

 

Things are up and down. She loves to help me cook. But she also has developed a bad habit of touching the pots and pans when they are on the stove. Last weekend, she grabbed the frying pan and burned her fingers. Not badly, thankfully, because it wasn’t up to full heat, but she seemed to have no awareness that touching the stove will burn her. We ran her hand under cold water and called UCLA again. I left a message but they never called me back.

 

The next day, I turned around while cooking to discover she was touching the pan again, but this time she had put on an oven mitt. I was so proud of her and she was proud of herself. I thought maybe things are turning around.

 

Then today, at Denny’s, she decided she was unable to wait for her food and grabbed my arm, putting it up against her neck. “What are you doing?” I asked her.

 

“Trying to choke myself,” she replied. I pulled my arm away but she kept fighting for it. When she couldn’t get it, she tried to choke herself, something she hasn’t done in years.

 

Are you listening Dr. DeAntonio at UCLA?

 

Send her to residential, you say? What’s to stop her from choking herself there?

 

Then she spilled water on herself and tried to strip naked in Denny’s. But that is nothing these days.

 

I am starting to crack. Not the “I am going to end it all!” crack. Like I said, there is no escape. I spend my days performing surgery on Jani’s number hallucinations who she brings to me with broken legs or severed limbs (the only thing that will engage her when there is nothing going on). I never get a break. I can never stop.

 

So of course I want out. I want out of this life.

 

But I can’t go.

 

Escape is just a mirage in the desert. I know it will disappear as soon as I get there.

All I have right now is the desert. I know that one day the rains will come again and the flowers will bloom. I know nothing lasts forever.

 

But the rains are a long way off right now.

 

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Plumbers & Carpenters & Fighters

It’s here again.

 

What I call my “black depression.”

 

I do not wish for death. The black depression is not a suicidal depression. It annoys me when I hear someone say of a suicide victim, “They took the easy way out.” Interestingly enough, the phrase does acknowledge the difficulty of life. If we are all prisoners in Plato’s cave, chained to the wall so that our heads cannot turn, we all suffer the various tortures that existence can bring, yet we condemn those who simply can’t take it anymore. Maybe it is jealousy on our parts. After all, to commit suicide means deciding to cross our greatest taboo: death itself. None of us know anything of what is on the other side of death. Whatever you or I believe we take on faith. And fear of the unknown is the most powerful fear we have. To kill yourself is to go to a place that no living human has ever gone to. You don’t know what is on the other side.

 

I’m in no particular hurry to find out.

 

But suicide also takes a certain level of energy. If you have ever experienced a truly black depression, simply dragging yourself out of bed takes supreme effort. The depression is so deep, the serotonin levels in the brain so high, that all you want to do is sleep. You have neither the energy nor the will to think of and carry out a suicide attempt.

 

This is why anti-depressants carry a “black box” warning when used in children or adolescents. The anti-depressant works by preventing re-uptake of Serotonin in the brain. Since Serotonin is the primary hormone secreted to make us sleep, preventing its re-uptake gives you energy, and that energy in turn can alleviate symptoms of depression. But if a second mental illness also exists, such as bipolar, or the child or adolescent is given to psychotic bouts of self-harm, the extra energy from the inhibited serotonin can give the child or adolescent just enough of a boost to carry out the sudden urge to kill themselves.

 

On September 14th, 1989, Joseph Wesbecker, who was on disability for mental illness, walked into his employer, Standard Gravure, and opened fire, killing eight and injuring 12, before putting a Sig Sauer 9mm pistol under his chin and killing himself. Less than a month before, Wesbecker had begun taking Prozac, which the families of the victims latched on to, suing Ely Lilly, at that time the patent-holder for Prozac. The families of the victims were understandably looking for someone to blame, and in those days not much was yet known about what SSRIs did to the brain. Did it change who you were? Did it rewire the brain?

 

Ignored was the fact that Wesbecker had a history of mental illness dating back to 1978, the year he was first hospitalized. He was hospitalized three times between 1978 and the shooting in 1989. In 1984, he was asked after a suicide attempt if he had ever felt like harming someone else as well (one of the three questions asked to determine if a patient can be held under a psychiatric hold). “Yes,” Wesbecker told the doctor. “Who?” the doctor asked. “My foreman, at work,” Wesbecker answered. By this time, Wesbecker had already attempted suicide 12 to 15 times.

 

12 to 15 times.

 

Wow.

 

I have only consciously attempted suicide once. I cannot imagine what it would take to drive someone to try 12 to 15 times. That isn’t simple pain. 12 to 15 times over six years means you are trying to kill yourself at the same rate that the average American takes a vacation.

 

12 to 15 times in six years isn’t depression. That’s a compulsion.

 

Wesbecker’s colleagues, friends, and family describe him as growing increasingly paranoid between 1978 and 1989. When a new company took over his factory, he was transferred to a new position. After a few months, he requested to return to his old job, complaining of stress. His request was denied and he became increasingly hostile toward management and began to believe that management’s failure to return him to his old job was the result of a conspiracy against him.

 

Was he a paranoid schizophrenic? We will never know. Certainly, there is more evidence of disordered thinking than depression, but perhaps the doctors who treated him focused on the suicide attempts and treated him for depression.

 

A lot of people don’t like it when I humanize killers. The “neurotypical” population doesn’t like it because they want to believe in evil, because believing in evil allows them to draw a distinction between themselves and the killer. It also lets them off the hook. Adult schizophrenics don’t like because they think I am spreading the myth that the mentally ill are dangerous individuals. Neither side wants to own killers as having perhaps been once like them before they opened fire on the innocent.

 

The reason I do humanize killers like Wesbecker is because we can stop killings like this. If you choose to believe that Wesbecker was just evil, then there is nothing you need to do, is there? Evil just exists.

 

But I thought God gave us free will?

 

And owning people like Wesbecker as mentally ill does not mean, you, as someone with schizophrenia or bipolar is also going to be a killer.  You are taking control of your own health. You are taking medication and in therapy. And even if you were doing none of those things, most likely you would never kill, although in all likelihood we would find you dead one day, hit by a car while wandering the street or beaten up by thugs or just dead from exposure.

 

But you say “I need to get an education. I need to get a job that is fulfilling to me. I want a life. How can I get these things if people think I might kill or ‘go crazy’ one day?”

 

Because you don’t. You don’t “go crazy” at all.

 

“Neuroptypicals” concept of psychosis comes from Hollywood films, where they see images of  McMurphy whipping the pajama-wearing inmates of an insane asylum into a frenzy in One Flew Over the Cuckoo’s Nest or Brad Pitt’s over-the-top Jeffrey Goines with the rapid hand gestures and winking eyes (the universal symbol for “crazy”) in 12 Monkeys or even Amanda Plummer’s “Honey Bunny” standing up on top of a diner table and screaming “Nobody move or I’ll execute every last one of you motherfuckers!” in Pulp Fiction.

 

Real psychosis looks nothing like that. Let me show you what real psychosis looks like.

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The two videos, above and below, were taken yesterday, in the lobby of the Santa Clarita Child & Family Center while waiting for Jani’s therapist. Jani takes the metal lock that allows the receptionist to secure the window between the reception area and the lobby. This piece of metal has teeth that form a serrated edge, designed to lock into the corresponding piece between the two panes of glass. Jani turns her wrist upside down and begins trying to cut herself with this serrated edge.

 

Jani has never seen anybody cut their wrist before, yet she somehow knew to cut the underside, where the ulnar artery passes through.

 

She is not rabid. Her movements are not rapid. She is just calmly sawing away at her own wrist. Susan tells her to stop. The receptionist, a stupid grin on her face, also asks Jani to give her the piece of metal and Jani complies.

 

The receptionist while smiling because she didn’t recognize that she was witnessing a psychotic episode. Jani was not emotional or difficult. She was simply passing the time by trying to cut off her wrist.

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In the second video, Susan asks Jani why she was trying to cut off her wrist. “So I can’t throw anything,” Jani replies.  Jani is fighting the impulse to throw and be violent, so the solution in her mind is to cut off her hands.

 

This from a child who freaks out and runs behind me any time a bee comes near. That is, when she is not in a psychotic state.

 

When you go out tomorrow and go about your day, you will pass dozens of people who will be, at that moment, actively psychotic but you will never know. They will stand right next to you at Starbucks. While you order your latte, they will be struggling to ignore the voices in their head telling them that they are worthless and should run out into traffic and get hit by a car. They may be negotiating with these voices, asking them that if they will just let them out of the Starbucks and let them get home, they will break out the razor blade and cut themselves where no one can see, or pull out some hair. They will promise to hurt themselves in some fashion if the voices will just let them have this moment, in public.

 

And you will take your latte, smile at them, and be on your way.

 

You will never know.

 

Psychosis is not loud and violent. It is quiet and its main target is the person it inhabits. The psychotic person would always rather hurt themselves than hurt you. Even if the voices want them to hurt you, they can usually be placated by self-injury to the host.

 

When Jani’s therapist or her psychiatrist ask her about her hallucinations, Jani tries to avoid the question. If they push, Jani will hit me. There is no loss of control. She just starts hitting me, without the slightest change in her mood or demeanor. I suppose her hallucinations don’t like Jani answering questions about them, so she hits me or Susan to placate them. She won’t hit her therapist. She hits only those she knows will forgive her. She hits the ones who understand. She hits the ones who will not turn away, will not abandon her. She doesn’t trust her therapist enough to hit her yet, because her therapist, trained in behavior modification like most therapists, treats Jani like she can control it.

 

And one day, maybe, she might be able to. But right now she is a child.

 

In my online support group, I have heard countless stories of children and teens who we as parents know are schizophrenic but are not believed by medical professionals, therapists, and residential treatment center staff, because the violence, when it comes, comes out of nowhere. Because there is often so recognizable trigger to the violence, and the child or teen seems emotionless, the staff see it as behavioral problem. The child is “choosing” to act up.

 

They are not choosing at all.

 

One of the key “negative” symptoms of psychosis is what is called a “flat affect,” or lack of emotion. This flat affect is not constant. One of the signs of psychosis is a failure to respond with appropriate emotions to external situations, or where the emotional response isn’t appropriate to the external stimuli.  Someone who is psychotic will not give you warning by flying into a rage before they try to hurt themselves. Everything will be fine and suddenly they are trying to cut their own wrists. There are no tears, no screaming, no “I hate you!” or what we associate with teen angst.

 

There is just a thought: If I cut off my wrists I can’t throw anything anymore.

 

Psychosis is not violence. It is the absence of logical thought.

 

Emotional state will give you no warning of psychosis.

 

This is why the “behaviorist” model of intervention is a total failure for kids who suffer from psychosis. Behavior modification is about teaching the child to be “aware” of feelings and then take appropriate action to deal with those feelings.

 

But psychosis does not come from feelings. It comes from thoughts, and once a child is in a psychotic state, they cannot “think” and “take appropriate action” because logical thought is no longer available.

 

It is possible to teach a person to be aware that they are thinking irrationally (which is a rational thought, hence the conflict) but this kind of training takes years. The only schizophrenics I know of who have done it are adults. Kids already have to deal with unstable emotions, and schizophrenic children have to deal with unstable thoughts on top of that.

 

By the way, after Susan told me what happened, I called UCLA for a direct admit. The nurse told me she would consult with Dr. DeAntonio, the head of the Child & Adolescent Psychiatric Unit at Resnick Neuropsychiatric Hospital at UCLA. A few hours later, she called me back to say that she had spoken to DeAntonio and he did not feel Jani needed to come back in.

 

Apparently, trying to cut your wrists with a piece of metal does not qualify as grounds for readmission. I guess it needs to be a real knife and there needs to be blood. What is really helpful is if you cut an artery and nearly bleed to death. Blue Shield can’t argue with that.

 

After all, the motto of American insurance companies when it comes to mental health is: Nearly die and then we will help you… maybe.”

 

It is pretty hard to “Thrive” as Kaiser Permanente likes to tell us in their commercials when your mind is telling you to hurt yourself.

 

The therapist was quick to tell us that “Jani was fine,” in the following session, clearly insinuating that we were the problem. No, Miss Therapist, Jani was “fine” because she had been restored to her normal schedule after you went on vacation.

 

Schizophrenia doesn’t take a vacation.

 

The next day we received a letter of rules from the Santa Clarita Child & Family Center. Number one was that video recording is not allowed to protect the safety and confidentiality of their patients.

 

They knew we had filmed what had happened.

 

I am not a fan of “no camera” rules because they aren’t really there to protect patient confidentiality. They are there to protect the facility so there is no visual record if they are not doing what they are supposed to be doing.

 

Individuals suffering from mental illness are at the mercy of whatever institution or organization is treating them and bringing in a camera is the only way the mentally ill can protect themselves and make sure they get the therapy and services they are entitled to under the law.

 

I was also struck by the final rule: If your child becomes violent toward staff, destroys property, or is otherwise disruptive, the parent must remove the child from the premises.

 

Oh, I see. They will only help Jani if she is a good little girl.

 

Then why the fuck would we be there in the first place?

 

It is like telling a child undergoing chemotherapy that you will not treat them anymore if they vomit from the chemo.

 

Rules like this are universal to “outpatient” clinics and they are, flat out, immoral. It is morally wrong to kick out a child because of symptoms of their illness.

 

Any child in a psychotic state or rage can be calmed down. You just have to stay calm yourself and ride it out. Do the therapy session outside. Go for a walk with the patient. Get your fat ass off the chair.

 

Newsflash to future psychologists: You can’t help people by just sitting in a chair. You can’t help people just by talking. You can’t ignore a patient in crisis simply because it isn’t convenient to you. In the end, you can’t sit on your ass in your office and see somebody once a week and then go home feeling like you have done good in the world. You haven’t. Anybody can do that.

If you want to help somebody, you have to make an effort. You have to try, even if you fail. You have to stay with the patient, through thick and thin. You cannot get rid of somebody simply because they are too hard.

 

At the bottom of this message was a number for the source of these policies, an Ari Levy, the Director of Programs for the Santa Clarita Child & Family Center. So I called him.

 

“Doctor Levy,” he answered the phone. Oh, a doctor. Of what, I wonder? Calling yourself a doctor, even if you actually have a PhD, is like buying a large sports car to make up for other deficiencies.

 

“Yes, hi. I am Michael Schofield, the father of Jani.” I have learned from past experience that it is better to start of pleasant. People tend to shut down when you are hostile. “I was wondering if we could schedule a meeting.”

 

“Why?” This surprised me. All these people do is take meetings, but his tone and the bluntness of his answer caught me off guard.

 

“Well, Jani has been receiving therapy from the Child & Family Center for almost two years now and we’ve had some issues with the services in the past so I thought it might be good for us to sit down and make sure we are all on the same page.”

 

“What kind of issues?” It was becoming clear to me that this Ari Levy thought he could just blow me off.

 

“Well, yesterday, while waiting for her appointment with her therapist, my daughter took a sharp piece of metal and tried to cut her hands off. The staff did nothing. It’s not first time something like that has happened. A few months ago, Jani was pounding on the glass and we were afraid that she would put her hands through the glass. Again the staff did nothing.”

 

“Well, I don’t know too much about Jani, or her situation, or you, but I have read her file. Didn’t DMH (Department of Mental Health) recommend residential?”

 

“Would you send your eight year old child to residential, Mr. Levy?”

 

“I can’t say. I really can’t say. I would depend on the situation.”

 

Okay, Ari Leavy, either your commitment to your own children is paper thin or you are giving me the safe, bureaucratic answer. I am guessing the latter. I have found that being a bureaucrat often destroys one’s ability to empathize with one’s fellow human beings.

 

“Well, it’s not something I am willing to do. The only residential placements we were offered were out of state.”

 

“Really? They offered you nothing in state?”

 

Is this guy really this stupid or is he just playing with me.

 

“Yes. The only two facilities who would take a girl her age turned her down.”

 

“Turned her down? Why?”

 

“They said she was ‘too staff intensive.’ Maryvale turned her down and Five Acres turned her down. Basically, she needs a one-to-one at all times, and right now that is us, her parents.”

 

“But the out-of-state facilities felt they could help her?”

 

A few days prior, I had learned about a 14 year old girl, the daughter of an old friend, who is currently in residential in Colorado at a Deveroux facility. Deveroux, it turns out, took her under false pretences. This girl has finally been diagnosed with schizophrenia (the previous diagnosis was bipolar with psychotic features). The girl is now on Clozaril, but so far she is not responding. When this girl has a psychotic episode, the staff try to put her in “time out” and she calls her mother, begging her to not let them do so. Because if you are being attacked by hallucinations, the worst thing you can do is put that person by themselves. Places like Deveroux are behavior modification centers, and as I discussed earlier, behavior modification does not work for severely mentally ill patients. So now Deveroux is telling this mother that they really can’t help her daughter. The mother wants to move her daughter back to California, but DMH won’t allow it.

 

That is why Jani will go to residential over my dead body. I am not going to hand her over to an organization that really doesn’t understand severe mental illness, who treats kids with schizophrenia like they are just “acting up.”

 

“I don’t think separating a young child from her family would be helpful,” I answered.

 

“Has it occurred to you that we may not be able to provide the services your daughter needs?”

 

I am well aware that he is suggesting that residential could “meet” Jani’s “needs” better than they could, but I am not going to send my daughter to residential just because the Santa Clarita Child & Family Center can’t meet her needs.

 

Try, for Christ’s sake.

 

“I mean,” he continued, “we can only provide the services we provide.”

 

“I understand that, but you are also the only game in town. As for Jani, we have gotten her therapist to agree to coordinate her vacation time with Jani’s other therapists so that not everyone is gone at the same time, so the next problem that I can see is Christmas. You are closed for a week and the school district is not obligated to provide anything during breaks. I realize money is tight, I work for the state myself, but would it be possible for you to set it up so Jani could see a therapist at the beginning of the Christmas week and then again at the end. That way she doesn’t go a full week without a session. It would require a little overtime but is that possible?”

 

I thought it was a reasonable request.

 

“Well, no.”

 

No! I was floored.

 

“We can’t just go outside of our existing programs.”

 

Oh, I see. So you won’t go the extra mile for sick little girl just so she can stay with her family and enjoy Christmas. I was really, really beginning to dislike Ari Levy.

 

“I understand you are making a choice not to send your daughter to residential…”

 

“It’s not a choice,” I cut him off. “A choice implies that you have at least two options. The only option DMH gave us was to send Jani to out of state residential. That’s not a choice. There has to be something between no services at all and residential. It’s the same complaint that I hear all the time from parents of mentally ill children in an online support group I set up.”

 

“You mentioned the other parents experience this problem,” he sounds like he doesn’t quite believe me that there are other parents like us and other kids like Jani out there. “What do they do?”

 

“Most of them leave the system. The pull back from agencies like yours because they get no actual help, just judgment. It was like when we had your WrapAround service. All they did was sit on our couch, sipping Starbucks, and telling us how to parent Jani when they even admitted they didn’t know anything about psychosis in children.”

 

“Let me put it this way, though. If you have a plumbing problem, you don’t call for a carpenter and expect him to fix the problem. You call a plumber.”

 

I can’t believe this. We are talking about a child, not home improvement.

 

“What if there is no plumber? Like I said, you are the only game in town. The biggest issue is that your programs are behavioral based and that doesn’t work for children with psychosis. Now, I would be willing to help train staff in how to deal with psychotic children.”

 

“That is a new program, though. Approval for that would have to come through DMH.”

 

“Well, who in your organization handles proposals to DMH?”

 

“Me. That’s my job.”

 

I almost laughed. “Okay, so why don’t we work on a proposal to DMH to create a new program that caters to children suffering from psychosis.”

 

‘Well, we could do that but creating new programs takes a long time, at least six months to a year. How does that help Jani now?”

 

“Maybe it doesn’t but it will help other kids and other families who are going to come after us. She isn’t the only one. More and more of your clientele are severely mentally ill and you need to come up with a way to adequately serve this population.

“Look, I know I sound flippant…” Yes, you do. I can tell he doesn’t believe me that there are more mentally ill kids in his agency right now and more on the way. He doesn’t believe that Jani represents the tip of the iceberg.

 

“but like I said, you don’t get a carpenter when you need a plumber.”

 

Is this the only metaphor this idiot knows?

 

“But when there is no plumber,” I answer, “then you have to get a carpenter. You get a carpenter and you teach him to be a plumber.”

 

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I used to be a dyed in the wool liberal, but there is a fatal flaw in public non-profit agencies like Santa Clarita Child & Family Center. Since their funding comes from the State government and not from those they “serve,” they are under no inherent pressure to do a better job. In private industry, in order to keep customers, you either have to create a better product or give better service than your competitors. You cannot ignore the needs of your customers because they are how you stay in business. But public agencies don’t have any competition. They win bids from the state. They are monopolies. Santa Clarita Child & Family Center is the only game in the Santa Clarita Valley. They have no competition driving them to be better. Second, their clients are often poor or, like us, lack choices because there is no other choice. This means that the Santa Clarita Child & Family Center can treat it clients like shit and get away with it, because if people get fed up and walk away, as they often do, as the mother of the girl in Colorado did, then what has the Santa Clarita Child & Family Center lost? Nothing. Their funding is still guaranteed by DMH. And all DMH cares about is keeping costs down.

 

The fundamental flaw in mental health in America is that nobody cares about customer service because the customer has no choice.

 

Four months ago, Susan and I participated in the NAMI/BringChange2Mind walk in Ventura County. It was a nice three mile walk along the beach and into the swamps where the Ventura River lets out into the sea.

 

What is the point of marching if no one is going to see you?

 

Did we march only to make ourselves feel better?

 

I am in a black depression because Jani is slipping and I am so attached her to that her mood is my mood. And I am depressed because it didn’t have to happen.

 

We should not be marching in swamps.

 

We should be marching on the Santa Clarita Child & Family Center. We should be marching on the Department of Mental Health. The fact that these organizations would throw away our children is morally wrong. They must change and we can change them. We outnumber them.

 

So I am going to set up my own march. If you are interested in joining me in the fight to give our children a decent life, email me and let me know. If enough of us march on DMH, they will have to take notice.

 

 

 

Also, the Jani Foundation now has a You Tube channel: www.youtube.com/janifoundation. We want this channel to showcase mentally ill children, both in good moments and in bad. Please consider sending in your videos and showing the world that your child exists. You can email videos to michaeljohnschofield@me.com. Please try to keep your video submissions short (under five minutes). We do have the ability to edit videos (Will Stenner, close friend and musician, will edit, blur out any faces of bystanders if necessary, and add music if you wish).

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

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

 

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

 

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

 

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

 

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

 

Not very well, John.

 

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

 

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

 

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

 

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

 

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

 

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

 

So what have I learned after eight years?

 

Some of it is hard.

 

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

 

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

 

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

 

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

 

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

 

“Yes.”

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Congratulations.

 

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Everybody Wants to Rule the World (But I Need to)

If I could control the universe, Jani would be fine.

 

Why would I want to control the universe? Come on. Everybody wishes they could control the universe. We all want to control the universe because if we controlled the universe and its variables we could prevent ourselves and those we love from getting hurt.

 

If we could control the universe, we would have nothing to fear.

 

Calalini is back again. Our world, my world, Susan’s world, is at the mercy of the variables of our universe. Calilini, though, safe inside Jani’s head, is a constant.

 

For those of us who don’t know what psychosis is like, we imagine that having reoccurring hallucinations would make it impossible to have any sense of constancy, and therefore safety. But that is because we assume our world is constant, which is really just a trick of perspective. Our world isn’t constant at all. It is dynamic and constantly changing. In order to get anything or anywhere in life requires a constant process of negotiation with our environment, namely other humans around us with their own thoughts, fears, wants, and desires.

 

When I want something from you, I can’t guarantee that you will agree to give to me. If I want to do something, I can’t guarantee that you will let me. I have to state my case and hope for the best. Since I think we are basically good people, we will generally grant the wish of another person as long as it doesn’t come into conflict with our own.

 

So, even though you don’t realize it, from the moment you wake up until the moment you go to bed, you are praying that the people around you are going to help you do what you need to do and therefore get you through your day.

 

Now consider hallucinations. Even if they are scary, even if they come and go without warning, they are still more constant than anything in our world because their needs never change. I dislike the residents of Calalini because they won’t share Jani with our world, but they have a distinct advantage. They are constant. They never change.

 

The only way to keep Jani’s psychosis at bay, even with the medications, is to try and make our world as constant as possible, which brings me back to my first line: If I could control the universe, Jani would be fine.

 

Or would she? After all, I am a variable myself. Some of you read my last blog where I talked openly and honestly about me and Susan’s marital struggles over the years and feared we were on the edge of getting a divorce. We’re not. Even if I didn’t love Susan anymore (although I do now more than ever), Susan and I cannot divorce because we, like Hebrew National Hot Dogs, “answer to a higher authority,” in this case Jani’s psychosis. Divorce is a variable Susan and I can control and can shield Jani from, so it will never, ever happen, I can assure you of that.

 

Once again, we are reaching the financial limits of our ability to pay for two apartments. It is August 2nd right now. The deadline to pay rent is tomorrow, Tuesday. I don’t even have enough to pay the rent on one apartment, let alone two. Despite having earned a Master’s Degree and become a college instructor, I feel like I am practically indigent. Thank God this was my career prior to Jani’s illness become acute, because at least I can still (I hope) teach a class here and there and make some money, enough to put food on the table. If I’d had a traditional nine to five job prior to Jani’s psychosis taking off, we would literally be starving. Or Jani would be in residential in Texas and we would only have one apartment. Neither is particular appealing.

 

The other day, I had two people at different times come up to me and ask me if I worked for North Hollywood Ice Company. They asked because I was wearing one of their t-shirts. I said no, I got it from a friend. You think with everything else I have shared on this blog I could tell them the truth that I was wearing a shirt I had picked out from a bag of clothes donated to Jani’s therapist’s office, but I just said I got the shirt from a friend.

 

Fear starts to grip me every time we approach the end of the month and I get frustrated with Susan because she seems oblivious to our predicament. She isn’t. She just knows that saying something in front of Jani will shake her sense of constancy, which is the mistake I made. Part of Jani’s constancy is needing to eat out every day for lunch, which is getting more and more difficult to do. I mentioned as much, trying to force my reality on Jani, which was a huge mistake. Jani responded by refusing to eat that day, even when I suggested we go to one of her favorite places. “I thought you were hungry?”

 

“I’m not hungry,” she answered.

 

“Jani, it’s okay. I have enough money for Wendy’s.”

 

“No, you don’t.” She didn’t state it accusingly, just as fact.

 

Oh dear, what have I done? “Look, Jani,” I opened my wallet and pulled out a twenty dollar bill, my last twenty dollar bill. “See? I have money.”

 

Only then did she agree to go eat.

 

It was a painful lesson. I cannot force my reality on Jani. Her reality may conflict with mine but I have to find a way to make the two fit together. I suppose that sometimes I resent the fact that the reason I am so broke is because of trying to maintain two apartments just for her.

 

Another variable I can control. Eviction notices take awhile to work through the system in LA County so I can shield Jani from our money problems and I am sure something will come along before then. Remember, life is a series of good and bad things.

 

But not all variables I can control.

 

The strange thing about this blog is that I was going to write about how well things had been going lately. Through the month of July, Jani had been doing better than she ever had. The school district was providing her an hour of occupational therapy three days a week, which Jani loved, more than any traditional schooling she has ever had. In May, we couldn’t get her to work even her hour in school as part of her home-hospital care, but occupational therapy she was focused and happy and had no problems doing her hour.

 

And then on July 23rd, the summer session ended. No big deal. School starts again on August 11th.  She will only be without her occupational therapist for three weeks. Granted, when school starts she will only have once a week again until her IEP on August 25th when we can try to get the district to restore the three times a week (assuming her occupational therapist is even available three times a week once the school year starts and he has to work with a much larger student body again.

 

But it hasn’t been a big deal. In just a week, Jani has started to spiral. The first signs are innocuous enough. She starts talking about missing UCLA and wanting to call the staff there, which we allow her to do.

 

However, the other night, when we came over to Bodhi’s apartment, he ran up to her, wanting to wrestle and play, as they have been doing all July. Jani has been really great with Bodhi lately, affectionate and loving. But the other night, she pushed him away and said “Go away, Bodhi.” Of course, he just kept trying to climb up into her lap. “Go away, Bodhi.”

 

It was better than hitting him, but this is his apartment. The whole reason we have two apartments is so he can have his own space to do what he wants without fear of Jani. I had actually started to wonder if we could all move in together again but this was a strong reminder that she is still not able to live with him and he is not yet old enough to defend himself.

 

I told her “No, this is Bodhi’s apartment and you can’t control what happens here. If you can’t deal with Bodhi then we will have to go back to your apartment.”

 

But she wouldn’t move. She just kept pushing at him. It was like the last six months of progress had just been erased. I ended up having to pull her into the bedroom to keep her away from Bodhi. We couldn’t leave because I was still making dinner, Jani hadn’t eaten yet, and I couldn’t afford to take us out. Also I wanted the family dinner together. Bodhi is old enough to open doors and kept trying to go in because he wanted to play with Jani. He isn’t afraid of her and we want to keep it that way. But for that brief moment, it was like we were back living in one apartment, living in fear.

 

The other good thing is that Jani and I have been going to the local animal shelter. We have become unofficial volunteers, cleaning litter boxes, feeding the cats and giving them water. When Jani has a task of taking care of animals, she can work for hours. She has worked nonstop at the shelter for four hours on several occasions, with no mention of her hallucinations or any sign of a thought disorder. Officially, Jani can’t volunteer there until she is sixteen. Some of the officers and staff let her though, because they know her, know her story, know how hard she works, and are willing and able to bend the rules because it makes her happy to help.

 

Unfortunately, the officers and staff on duty this past Saturday weren’t those officers and staff. They were the ones afraid of being sued should Jani be bitten or scratched. They were afraid of losing their jobs. Or maybe they just didn’t want to make the effort.

 

Either way, I can’t control who is working at the shelter and whether they will allow Jani to help.

 

And not being able to help with the animals was followed that night by her pushing Bodhi and telling him to go away.

 

Today Jani was rapidly “decompensating,” even though a week ago she was doing great. Is not seeing the occupational therapist and not getting to help with the animals contributing to this? Almost certainly. Is there anything I can do about it? No. There are limits to how much I can control the constancy of Jani’s experience in this world. Things that are mild disappointments to us for her open the door to her psychosis returning. She can’t understand the temporal nature of not getting her way on a particular day, can’t understand that even if today wasn’t a great day, that doesn’t mean tomorrow won’t be, that even if this week wasn’t great, next week could be.

 

It is hard to get her accept the ups and downs of our world when Calalini never goes up and down. Calalini never changes.

 

In my old blogs, I used to rail against those who I felt stood in the way of Jani’s stability. Now I understand that it isn’t that they are standing in her way. It’s just that the rest of world doesn’t revolve around Jani’s psychosis.

 

And we do.

 

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