I am Jani's "staff" tonight. Yes, I am her father, and it was nice to hear her call me "Daddy" a few times today. Not so much for the reasons I was depressed a few weeks ago, when I felt more a visitor in her life than her father. Hearing her call me "Daddy" was nice because it was clear that during those moments she was happy.

But I am also her "staff" tonight. I am on duty tonight. I write this as Jani sleeps on the couch only three feet away. Susan and I started referring to ourselves as staff more than a week ago as a way of easing Jani home. It was an idea we had, a tactical decision to aid Jani in the transition. The staff at UCLA were important to her. There is no denying that. They were her parents and playmates for four and a half months. It was their daily engagement that helped to steal her back from Calalini and its furious heat. It was them who gave her a reason to ignore 400 the Cat, Wednesday the Rat, 24 Hours, and 100 Degrees.

Not all of them were great. Jani had her favorites. Those were the staff who had genuine affection for her. When you are fighting against schizophrenia, you have to understand what you are dealing with. You are dealing with a world that understands the sufferer so much better than the real world could, because it exists in her head. Those of us who live in the real world agree to share it. For the schizophrenic, their world revolves entirely around them. The real world as it is cannot compete with that. The world the social workers, WRAP workers, FSP workers, and generally any social service worker want to bring Jani back to is, when you think about it, a pretty shitty world. What I can't stand about social workers is that they just accept the world the way it is. I believe to truly fight mental illness, especially schizophrenia, is not to simply make the patient better. To fight schizophrenia is to make the WORLD better, because that is the only way you can win.

For the last six months, Susan and I have battled the schizophrenia. Today we returned to battling the world.

Jani's stability is fragile. She still sees the hallucinations. Today, at the pool during her RT (recreational therapy) time, she started playing briefly with 24 hours. When I asked where 24 Hours was, Jani told me she was at a corner of the pool. This is why Jani requires a one-to-one at all times. We have to distract her long enough for her to learn how to ignore the hallucinations. And our fears are that if the world gets too hard, she will retreat right back into playing with these hallucinations. She is trying to hard right now. At the pool tonight, a couple brought a ten month old baby girl. Jani was very nice and polite to the couple and played with the baby girl. I sat there, nervously watching, knowing their baby girl was high-fiving a time bomb. I wondered what the couple would think if they knew the sweet little blonde girl playing with their infant daughter was a violent schizophrenic. But at the same time I held back, wanting to give Jani a chance to feel "normal."

I said nothing to the couple about Jani's condition. Jani did mention being in the hospital but the couple did not ask questions beyond the standard "How old are you? What is your name? Where do you go to school and in what grade?" Jani answered all these truthfully and without any hint of psychosis. It was wonderful to see.

Susan and I are keeping Jani on a strict schedule. The less time she has to think, the better.

Susan and I work shifts with Jani, just as we did when she was an infant. One night on, one night off. We do this so Bodhi never goes without a parent for more than one night and so that Jani gets the attention she needs.

Originally, I wanted an angry song for tonight's blog to fit my mood. I am not angry at Jani or her illness. But imagine fighting through six months of a severe mental illness only to be hit with friendly fire.

It took almost the entire hospitalization to get what is called WRAP services, which is a useless acronym of yet another useless social service. WRAP finally appeared in our lives about four weeks before Jani was released, and like all social workers they talk a good game. In our fight for Jani, Susan and I have kept encountering government agency workers who come to meet with us, eyes and words full of sympathy, who commend us for what we have done and tell what good parents we are. They cluck their tongues in sympathy, squeeze our hands, shove document after document in our face to fill out and sign, and we leave these meetings knowing deep down that we were talked out of our undies and into bed.

Yet like a girl that keeps going out with the same asshole guys, thinking "this time it will be different," we kept getting dumped every time. Finally, after more than a year of this, we have detected a pattern. They are happy to talk to us when our daughter is in the hospital. Yet once we actually need them, either for Jani's support or for our own, they are nowhere to be found.

We had two examples of this today. The first was Denise, the school psychologist for the SED program at Old Orchard. She was so sweet, sugary sweet.

Until today. Until Susan wanted Jani put in the same classroom as "Rachel," her friend from UCLA. Are they in different grades? Yes. Is the State kosher with that? No. What got Susan angry was not so much that Denise said it couldn't be done. It was that she didn't try. Early she had told us she would do whatever it took to help Jani.

She lied.

I heard her bad mouth Susan under her breath as she left the room. It's not her daughter who has schizophrenia. We are trying like Titans to keep our daughter's illness from become acute again. We are terrified of losing her. And every one is telling us to calm down.

Then there was WRAP, who we did not hear from all last week even though they knew Jani was coming home. Only when we called and yelled at them today did they come up. When they did, they never even spoke to Jani, including Jani's "advocate." First they were bothered by Michi and Grace being present. Second, when Jani briefly hit Bodhi, Susan grabbed her, only to be quickly told that she cannot "lay hands" upon her child. So we are supposed to stand around trying to talk to Jani while she kicks Bodhi in the chest? I told them that if Jani becomes psychotic, we have to get her into a "time out" in her room until she calms down, just as they did in UCLA, and if that means dragging her by her feet, so be it. Joanna, the WRAP Coordinator, threatened to report us to DCFS. At that point I threw them out. They were supposed to support Jani but all they did was make us sign a paper and then threaten us.

So now we are expecting another visit from DCFS (our third).

What boggles my mind about this is they literally had told us earlier in the day what great parents we were, how we were setting things up for Jani, and operating in such a stressful situation. Two weeks ago they had said that they "couldn't handle" Jani because she was too psychotic for them. They handle behavioral problems, but not behavioral problems caused by psychosis (which is why they referred to Full Service Partnership-who we still haven't heard from because the woman who runs it is on vacation). Now, suddenly, they are threatening us?!!!! We asked them for help and they come in, do nothing to help, and end up threatening to get DCFS involved?!!!!

Oh, I forgot to mention that Denise at Old Orchard told us that if we didn't like their program Jani could go somewhere else. There is no where else for her to go. All residential programs have rejected her other than Devereux in Victoria, Texas and we are not going to send our daughter to the middle of nowhere where we can only see her twice a year. We want her in our lives. We want her to be happy. That is what all this has been for.

Back to WRAP. I told them to get out and they beat a hasty retreat, apparently not that concerned for Jani's safety. I think they realized that we want more than talk and they can't actually do anything.

They haven't called. They don't give a shit. Like every other government program, they have failed us when we really needed them.

But you know what? We don't need them. Susan and I are the only ones who understand Jani's illness. We have and continue to learn how to deal with it. We kept her alive up until this point. We were the only ones. We love her.

So from this day forward, Susan and I are done with social services. They can all go fuck themselves with form 39B, but only after initialing here, here, here, and signing here. I have been betrayed by this useless bureaucrats for the last time. Never again will I trust the government. From now on, Susan and I are on our own, along with friends who love Jani like we do.

As I said above, I had wanted an angry song, because I am fed up. Arnold can cut them all for all I care. It has always been just Susan and me and it always will be Susan and me. I don't trust anyone else anymore.

"Wonderwall" by Oasis doesn't sound like an angry song, but it is, especially the last verse. What the song is actually about is an imaginary friend who is going to come save you from yourself. That is the "wonderwall" (a reference to a George Harrison scored film about a man who watches woman through holes in the wall and eventually saves her). Yes, we have been fighting Jani's "imaginary friends," but the social services and social workers are just as imaginary. They too are imaginary friends. They talk to us in tones cool and comforting, but like any imaginary friend, when you need them they are never really there.

So I dedicate tonight's blog to the social workers of America, the wonderwalls of our society. They watch, but they don't do shit.

Note: My blogs are meant to be taken as representations of my emotions at the time, not representations of fact. Since I originally wrote this, we have come back to work with WRAP, coming to understand that WRAP is being tasked with something it was never designed to do. WRAP is at the lower end of the spectrum of social services, designed for in-home help. What Jani actually needs is residential placement, but the only two facilities in California that will accept a child her age rejected her, feeling she would be too “staff intensive.” A little known fact is that “psychiatric residential facilities” can pick and choose who they want to take and are not required to accept anyone. Therefore they generally will only take Department of Child and Family Services children who have been pulled from their homes by LA County children’s services. Certainly, this children may have some psychiatric problems, but they are still easier to deal with than Jani’s illness, and they are guaranteed payment from the County with DCFS kids, as opposed to Jani who has private insurance.

Denise at Old Orchard and WRAP have tried their best in a situation they should not have had to deal with. I hope they can forgive me for sometimes losing my patience.