On Tuesday afternoons, I see my therapist, or at least I do at the moment until Jani comes out of the hospital again, at which point I will have to figure out a way to maintain my emotional and psychological health while working around Jani. Once, during Jani’s last time out of the hospital in early June, I had to bring Jani with me to my therapist. In order to maintain safety, Susan and I had enacted a policy where neither parent ever took both children at the same time. This is because if Jani has a meltdown, becomes violent, or runs into traffic because one of her imaginary friends was gesturing to her, the parent who is with her cannot be worried about Bodhi’s safety at the same time. Protecting Jani and dealing with her illness is a full-time job and we cannot ensure Bodhi’s safety at the same time. So it is, and will continue to be when Jani comes home again, one at a time.

The only time Bodhi ever gets both parents at the same time is when Jani is in the hospital. I wonder how this will affect him later on.

The first week Jani was out, I had to take Bodhi with me to therapy. The next week, because Susan had already had Jani all day, I took her. Obviously, I did not talk about her in front of her. I could have cancelled. Instead, I prepared the best I could, taking Jani to Toys ‘r Us and buying her toys and not giving them to her until we were in my therapist’s office. She actually made it through 40 minutes of the session, which was a huge accomplishment for her. I think I went, rather than cancel, because I wanted to show my therapist what my life was like. I wanted him to see why I couldn’t always do the things he felt would be good for me psychologically, like taking time to exercise or going for a walk by myself or taking a class in something or other. I wanted him to see that I had no life outside of Jani.

I don’t say that to complain. I say it because it is reality of having a mentally ill child.

Back to seeing my therapist today. As many of you have noticed, I have been silent for a while. This is because I was not in a place to reach out. Part of what I am trying to do with this blog is to offer hope, not only to readers who are experiencing the same thing, such as “a mom” and “Mel,” and not only to myself, but also to Jani. Jani still gets up in the morning feeling excited and that is something I never want to take away from her. We are trying very much to act around Jani as if dealing with schizophrenia is the most normal thing in the world, because if she is to live with it, it must be for her. And so it must be for us. And so when she hits Bodhi or loses herself in her thought disorder, we do not respond any more with “Hey! Don’t do that!” We respond with “It is okay,” followed by a patient explanation of why she did NOT need to hit Bodhi. There is no judgment, only explanation.

But if Jani has not had a good day, the moment Susan and I leave the unit, we fight against our own despair that threatens to overwhelm us.

Every time Jani appears to be doing better, we relax. We don’t ever allow ourselves to consciously think that maybe we will get a period of stabilization, but the truth is that every time Jani is doing better, the place in our souls where our hope lives reaches out and grabs onto it as a lifeline. And the only thing that can fray that lifeline is Jani herself.

Nothing else phases me anymore.

On Thursday afternoon, as we were getting ready to leave for our “family session” meeting with Jani’s doctor and social worker, followed by seeing Jani, I got a call from DCFS (the Department of Child and Family Services, what we called Child Protective Services here in Los Angeles County).

You know that feeling where you can feel your blood vessels constricting? That is why in moments of fear we “hear” our heart pounding.

Of course I was terrified. Not for myself. Like I said above, I have no life outside of Jani. I was afraid, and continue to be afraid, only of Jani being taken away from us. If I thought that anyone else could keep her alive, I would have no problem with this. But so far no one else has stepped up to plate (including two in state residential “psychiatric” facilities who refused to take Jani because she was too “staff-intensive”). The only residential facility that offered to take her was one in Texas (because in Texas it is legal to physically restrain a child while it is not in California) and we flat out refused to send our six year old child fifteen hundred miles away where we could not check up on her.

None of this information was provided by the person or persons who filed the report on Jani’s “abuse,” despite the fact that their “evidence” came from this blog, and I have included all this information here before. No, the person or persons who filed the report did so using only the same two lines from the “about me” page that have been used as the basis of attacks on me before.

So the first irony in all this is that whomever filed the report (such information is never disclosed so those that do suspect child abuse can do so anonymously and without fear of reprisal, as it should be) made the claim that we (I supposed mostly me) were abusing Jani rather than let her go to residential care.

Residential care wouldn’t take her. As I said, the two in-state facilities rejected her because her psychosis was a bigger deal to them than my “abuse” (please for the love of God realize I am being sarcastic here). Maryvale and Five Acres were worried about Jani’s safety all right, but not from me. No, they were worried about being on the hook for a lawsuit if Jani ran into traffic or otherwise wandered off (both are “open” facilities-locked “level 14” or chronic severe mental health facilities do not exist in California. However, we have plenty of jail cells for our mentally ill (again, being sarcastic)).

The DCFS social worker had already read my blog (in its entirety) and, unlike my critics, knew exactly what I was talking about, knew what I meant when I said we had tried “starving” Jani, knew that when I wrote that “we hit in impotent rage” that I meant that is how I felt EMOTIONALLY, not what I actually did, and noticed the disclaimer above my blog that says these entries are meant to represent my emotions AT THE TIME OF WRITING, NOT FACT.

She knew that I was given to be melodramatic in my writing (which obviously I can do no longer do). She happened to be the same DCFS social worker who had checked on Jani five months ago (for reasons I have blogged about before).

Unfortunately, Jani has been in and out of psychiatrist’s offices, psychologist’s offices, been evaluated by the school district (over and over again), seen by County Department of Mental Health, social workers up the yin-yang, County therapists, County psychologists, three hospitals, not to mention her standard check-ups at the pediatrician (two separate pediatricians because we moved) over the last two and half years.

If I had really hit Jani in “impotent rage,” given that I am a fully-grown man, don’t you think that one of those HUNDREDS of people who have Jani day in and day out over the last two and a half years would have NOTICED something?

UNLESS....

all those people and all those agencies and all those facilities are working together in a grand conspiracy to conceal Jani’s abuse.

Which, by the way, was basically what we and UCLA were accused of. You see, this person or persons (or maybe a certain “church” that many celebrities belong to that has a history of an irrational hatred toward psychiatry all because a certain science fiction writer’s ideas about treating the mentally ill were rejected by the American Psychiatric Society because he didn’t have ANY evidence to back up his claims), did not just file a report on me and Susan. They also filed a report against UCLA, alleging that UCLA was breaching the “standard of care” and was apparently concealing child abuse.

This DCFS worker also read the forums where I have been attacked. So she got both sides.

Then she did her job, which is to check up on Jani and Bodhi’s well-being.

I told her we were meeting the doctor and Jani’s social worker and invited her to attend. She took me up on that offer.

We were bringing Bodhi anyway, because we always do, but it turns out we had to so she could see Bodhi.

She talked to Jani’s doctor. She talked to Jani’s social worker. She talked to me and I went through the formality of responding to the claims against me. I reiterated that I am always willing to co-operate with any investigation of me.

Why?

Because as my blog readers know by now, I have nothing to hide.

Then she went to see Jani, and brought the Del Taco we had brought for her. We stayed and went back to our meeting with Jani’s doctor, getting back to the business of taking of Jani.

About twenty minutes later, the DCFS social worker popped her head back in the meeting to say that Jani was doing “hreat!” This DCFS worker had seen Jani in February. Jani had attacked her. At the time, Jani had been so unstable that the DCFS worker had to bring a therapist as “back up.” This time, she happily reported, Jani was happy to see her and they talked nicely for several minutes.

I have not heard any more about the matter, but I assume the investigation will go on until DCFS is satisfied that no abuse is taking place. Then the case will be closed until the next time somebody takes something I write literally and calls DCFS. As I told this worker, I was actually happy that one of my critics actually did get off their duff and do something. At least they can sleep now knowing they did something. In all seriousness, if they really thought ULCA and Susan and I were conspiring to abuse Jani, I am glad they did file a report. At least that person is better than all the other useless individuals who call me a child abuser in internet forums that nobody reads, but never actually got off the computer to do something. I commend this person or person for actually taking action, misguided though it was.

Still, for a few days after this, Susan and I were nervous. Not because we thought this claim would go anywhere but because the certain “church” who may or may not be behind it has deep pockets and a pack of lawyers and have been known to harass people they target before.

I finally got over this on Sunday, when I realized that Jani’s schizophrenia is a MUCH tougher enemy than this “church.” Jani’s schizophrenia can take her away from us. The “church” cannot.

Jani had been doing very well up until Sunday, so well that when we left on Saturday I was really ready to bring her home. I was all set to call her social worker and say “Let’s get her released.”

What was amazing us even more is that Jani seemed to be doing well despite the departure of her best friend from the Unit the previous Wednesday and then the departure of only other girl on Friday.

Jani was continuing to do well, despite being the only girl, despite being one of only four kids on the unit (all quiet boys that make me wonder what they are there for), despite the slowdown of the Unit over the summer months, which is their slowest season.

And then we came to visit on Sunday.

Almost right away it was clear that something had gone wrong. When we arrived, Jani was in the bathroom, with the door open (she closes it when she is not psychotic) and refusing to wipe herself, let alone wash her hands. This collapse of personal hygiene is a sign of psychosis.

Jani was not violent during our visit, but she wasn’t really “there” either. If she was not engaged LITERALLY EVERY SECOND she would slide into her delusions and play with the rats, ignoring everybody else.

As an aside, I often been asked how I can tell the difference between normal imaginative play and psychosis.

My answer is that you just learn. Nobody knows your child like you do. We can tell from Jani’s actions and the tone of her voice. When she is playing with “imaginary friends” but is not psychotic, she is re-directable, will engage in play with real people like us or other kids, and she talks softly, almost whispering.

When she is psychotic, she makes no effort to inject herself as the center of attention, ignores efforts to play with her (even if you play with her imaginary friends,” and she reacts with genuine surprise when a hallucination enters the room. The tone of her voice rises, moving from low pitch to a surprised or manically happy high pitch as well as shouting, even during normal conversation, and she seems totally wrapped up in what she is seeing.

I probably didn’t explain it very well but my point is we can tell. There are clear and pronounced differences between psychotic Jani and non-psychotic Jani.

She had been telling the staff that she hated the medicine because “it makes the rats go away.” Jani only ever says she hates the medicine when she is psychotic (because her reasons for hating it are irrational-as opposed to if she said she hated it because it made her sleepy or sick). We suddenly worried that maybe, since her real friends had left, had Jani decided to “cheek” the medicine in order to bring back her delusions so she would not be alone?

I hope so. I would rather it be that than the medication is losing its power.

If Clozaril doesn’t help Jani, then I got another round of despair coming that I will have to fight through.

Jani has rarely resisted taking her medication, because she knows she needs it (she came to this herself-we have never told her this). But while psychotic, she has resisted and has on rare occasions hidden the medication.

We asked Jani if she had been taking her medication.

She swore, a little too earnestly, that she had.

We asked if she spit it out?

She swore she wasn’t.

We asked her, if she WAS to spit it out, where would she put it.

She said that if she was to spit it out, she would put it in the dirty linen basket.

I have no idea if she did that or not. If she did, the evidence would be gone because the dirty linen basket is emptied every day. I hope it is that. I would rather it be that than the Clozaril is losing its effect.

Jani did have blood work done today and they checked the Clozaril level. Her white blood cells continue to hold steady and her body is not having any side effects from the drug, but we won’t know until tomorrow what the Clozaril levels are (that takes more time in the lab than a CBC panel).

Jani also told us that Wednesday the Rat was back.

On Monday, though, Jani seemed to be doing better. In the morning, however, she had her first episode of violence in a while when she bit her favorite staff member in the stomach. Jani has bitten me there before, biting down on the stomach fat, and as painful as it is all you can do is wait until she releases because if you pull back the wound is worse.

Still, by the time we saw Jani on Monday afternoon, she was doing better. She was more “present” this time. She still talked about the rats but was not playing with them every moment. And it was “Monday” the rat and as it was Monday, this indicates more imagination than psychosis (another sign of psychosis is when the “rat” present doesn’t match up with the day of the week).

It was a pretty good visit yesterday. Like I said, she was present.

Another way that we can gauge the psychosis by Jani’s hugs. When she is not psychotic, she gives us a full hug. When she is psychotic, she will hug us but her body is pulling back, like it is uncomfortable for her.

Back to my therapist today. I was upset that Jani’s friend, whom when she is around you would never know that there was anything wrong with either one of them (her friend has been diagnosed paranoid schizophrenia), is moving to another local city. This means that Jani and her friend, who I have referred to as “Rachel” in this blog before, will no longer be in the same special ed classroom. Rachel is moving to another county.

Remember what I said about lifelines? Well, to me, Rachel is a lifeline for Jani, and I suppose, for me. When Jani went south again on Sunday, I immediately worried that maybe the Clozaril hadn’t worked as well as we thought, that maybe Jani’s stability had come from Rachel being back on the Unit. I got scared that maybe without Rachel, Jani can’t survive. So I offered Rachel and her mother our second apartment, Jani’s apartment. I floated this idea in sort of a joking manner, because I know it takes a lot for Rachel’s mother to move into Jani’s apartment. Right now she is going to move in with her boyfriend, because caring for Rachel and her illness has meant missing so much work that now her job is threatened and she can’t support herself and Rachel alone anymore. I get that. I also get wanting to live with her boyfriend. God knows I don’t know if I could get through this without Susan. I can’t imagine having to go through this alone.

So offered the apartment in a joking manner at first, to gauge her reaction, because I knew it meant, in a way, giving up whatever hopes she still has of having a normal life.

You see, Susan and I have already given up on having a normal life. Susan and I do not see how you can have a normal life when your seven year old has schizophrenia. We cannot see how you can have a normal life when Jani can never be left alone for fear she will harm herself.

So I wasn’t joking to Rachel’s mother. I was deadly serious. Because there is a part of me that believes that her daughter may be the only one who can save my daughter.

I have never told Rachel that, nor her mother. But I am not sure it isn’t true. It comes from so many times believing that Jani was stabilizing, or that we would get help from the school district or social services, only to see it fall through our fingers, and with it our confidence that we can get Jani to adulthood alive.

That is what I am not sure social services understand. Every time they fail us, they chip away at my confidence that I can keep my daughter alive.

Because I know I can’t do it alone. For five years, Susan and I kept her illness at bay by stimulating her 12-14 hours a day. We kept her in this world by making it more interesting than the delusional world.

Then our bodies gave out underneath us.

What terrifies me is that I can’t do for Jani what I did five years ago. I don’t have the energy left. And so I am desperate to surround myself with people who can carry the burden for a few hours, because they have done it, because they can do it, because they don’t think Jani is strange, because they too can turn the other cheek when they get attacked.

From the day that we first saw a psychiatrist because of Jani’s violence.... no, check that, from the time Jani stopped sleeping as an infant, we have prayed for angels. These angels took various forms. When Jani wasn’t sleeping and we slogged from place to place to get her stimulation so we could get a few hours, the angel was that Jani would grow older. When Jani screamed at people who called her by name and ran behind the counters of places of business, wanting to work, the angel was that this was a stage and she would grow out of it. When she became violent, the angel was the medication. When we got AB3632 for Jani, that was an angel. When the Department of Mental Health told us of all these “great” services we would get for Jani, that was angel. When Maryvale told us they were going to take Jani, that was an angel. When Jani got SSI and thereby qualified for Medi-Cal which was keeping her out of residential, we thought of that as an angel.

Before each of these events occurred, Susan and I saw each one as the “angel” that was going to save us.

And each one failed us, failed Jani.

Rachel was the latest angel, the angel that was going to come down and save my daughter from her illness.

I’m sorry, Rachel, that I put that on you. You are a little girl and you deserve a childhood. Rachel’s mother deserves whatever life Rachel’s illness will allow.

What I realized today, sitting on my therapist’s couch, is that which I am most afraid of.

That no angel’s gonna save us.

This does not mean I don’t believe. It just means that God has already sent his angels for Jani.

And it is us.

It’s just you and me, my friend.