…where we came in?

Six days have passed since Jani was released from UCLA’s Resnick Neuropsychiatric Hospital. We have passed the three day record of her last release back from February 18th-21st so I suppose that is an accomplishment. I knew that this was going to be hard, but the anticipation of bringing Jani home was like having a child in the first place. Before Susan and I had Jani we would meet grizzled vets of raising children, even “typical” children, who would tell us it was going to change our lives. Of course, we smiled and said “We know!” We didn’t. Having children is like going into combat. There is no way to prepare yourself fully. You can understand and prepare yourself intellectually but it is only an abstract idea because you have nothing in your previous life to compare it to. Sure, you may have been the “cool uncle” to siblings’ children or taught or babysat, but those experiences are like watching war movies. Eventually the movie ends and you go home. But once you have your own child, it never ends. The movie goes on forever. There is no break. Your life ceases to be your own and you exist only to provide every single need 24 hours a day seven days a week for another human being.  For most parents, this dependency quickly ends with the end of infancy, but with a special needs child it never ends.

So I was intellectually prepared for Jani to come home. We had prepared as best we could by turning her apartment into a miniature version of the psych ward and Susan and I became Jani’s staff. But for us every shift is a double: sixteen hours out of every thirty-two, with no breaks. But like everything else with Jani, I was not prepared for the emotional toll. I feel like I am trying to keep my family functioning in a collapsing building. We try to clean up and make dinner and take care of Bodhi as the ground rocks beneath our feet, the windows shatter, and big chunks of concrete rain down around us. We walk around on eggshells, especially when Jani is around Bodhi, constantly watching for any sign Jani is about to go off.

It starts off somewhere between four am and six am, which is when Jani wakes up. These first few hours of the morning are not bad. The worst thing I can say is that I have to drag myself out of bed, Jani’s bed to be exact. Yes, I know I am playing with fire with DCFS (Department of Children & Family Services) by sleeping next to her in bed, but I am beyond the point of giving a damn right now. I also had to wash her body in the bathtub yesterday night because she was just sitting there in the water staring down at some point ahead of her. I had to tell her six times to wash her private areas with the washcloth, not because she was ignoring me or disobeying me but simply because she was either too depressed to respond or listening to the playing of the characters in her head. A little over a year ago I got investigated by DCFS the first time because of giving Jani baths. At the time Jani was in her first hospitalization for violence at BHC Alhambra, a county hell-hole filled mostly with kids from group homes who actually were abused by their parents. I aroused suspicion of the staff by insisting on giving Jani baths. This was only because she wouldn’t take them otherwise. She was so psychotic that she no longer thought of her personal hygiene. And I didn’t bath her everyday. Susan and I alternated.  At the same time, Alhambra, unlike UCLA, actually mixed “peds” (pediatrics) and adolescents together so Jani was going to group sessions with teenage girls who were sharing stories of abuse. Jani was desperate to fit in (she liked it there) and told a staff member that once when I was giving her a bath I had…This is hard to write… I had inserted my finger inside the washcloth into her vagina. Actually, this is not what Jani actually said. She said something about playing with her kitty, which was probably one of her hallucinations, as many of her hallucinations are cats. At the time, Jani was getting daily shots of Thorazine as PRNs (as needed medication) to control her violence so her psychosis was full blown. She was playing her hallucinations constantly. However, one of the female staffers who was in the meeting took Jani’s kitty reference as a slang term and called DCFS. When the DCFS worker came out and talked to Jani, she was no longer so psychotic. The thorazine had kicked in. Jani couldn’t remember what she had said in her psychotic state, so the DCFS worker asked her more pointed questions about her private parts and my contact with her. This is when she told him how once last summer when I was giving her a bath I had been too rough when cleaning her vagina and I guess the washcloth went in. He asked if it anything like that had happened again. She said no. DCFS workers are required to ask the same question in different ways to ensure there is no coaching and Jani never admitted to any other contact of that nature. Still, I had to be investigated.

That night the DCFS worker and two Sheriff’s Deputies knocked on the door. I knew exactly why they were here. I had seen enough “Law & Order: SVU” and seen the strange looks the female staff gave me when I asked to give Jani a bath. The DCFS worker took Susan into the bedroom with Bodhi while I started cleaning up. One deputy asked if he could look around while the other watched me with his hand on his gun. I am sure they thought I was the scum of the earth. My only thought though was not anger or fear, even though I was sure they were going to arrest me. Not because I had done anything but because I knew I couldn’t prove that I hadn’t. So I started looking around the apartment, trying to think of what I had to do to make life easier for Susan before they took me, what affairs did I have to get in order. I really believed that in a few minutes Susan was going to be alone with Bodhi. I hear Susan cry out in shock behind the closed bedroom door. The door opens and the DCFS worker comes out with Bodhi and asks if I can hold him. Susan was sobbing in the room. I took Bodhi and sat down, with both deputies looking down at me.  I held my son, thinking that this might be the last time. If I went to jail (and I was convinced I was), I knew what happened to child molesters in prison. So I figured I would be killed. So I squeezed my son Bodhi and tried to psychically convey all I wanted into him, hoping that some time in the future, he might barely remember the last time he saw his father.

Then the DCFS officer came out and it was my turn. He told me the accusation against me, starting with what Jani had said. At first there was only fear, like standing on the edge of a bridge, but then what he said Jani had said sunk in and it doesn’t sound like her at all. I told him that and he agreed, saying that Jani had not confirmed it. We went out and we all sat down at the table. He told us that they needed to examine Jani and that I needed to comply with hospital requests not to bathe her. I agreed and we signed the paper saying we would cooperate with the investigation. That was it. The deputies looked at the DCFS worker and one said, “Is that it?” He seemed disappointed that not be arresting me. “That’s it,” replied the DCFS worker.

Three months later we received a letter from DCFS saying that the charges against me were unfounded and they were closing their investigation.

Back to our days currently. The mornings are okay, I think because Jani wakes up in a good mood. She has never woken up depressed, which is why she never met the criteria for bipolar. The beginning of the day is the only time Jani is ever truly happy, because no matter how hard her life is or the previous days have been, she seems to always wake up feeling optimistic and excited. I think that is one of her strengths and something that will hopefully keep her alive. The new day allows Jani to start again.

She is very happy and pleasant and cooperative in the morning and I have to make sure that I drag myself up without complaining so as not to risk knocking her out of this place and back into her psychosis. If I have to I will forget the shower so Jani doesn’t have to wait that long. We go to breakfast and then take Honey to the dog park. Jani is happy and in a good mood.

Then, just short of 9am, the psychosis begins to appear. We can tell because her eyes lose the excitement. The stones set in her eyes. The thrill of the new day has already worn off. Jani is at 9am and wondering “Is this all there is?” which most of us don’t wonder until our mid-life crisis. Jani has a mid-life crises every day, mid morning and mid-afternoon. Her shining eyes go dark and she starts to stare more at the ground.  I think in these moments Jani is fighting to stay in our world, but it is a losing battle. She starts hearing the voices of her playmates from Calalini, her delusions that only come when she is bored. But the world is not big enough to keep her from getting bored and Susan and I are only human and fighting against an inhuman energy.

We have already gone up from 25 mg of Thorazine every three hours to 50mg to try and stop this from happening. It doesn’t stop it but it does allow us to bring her back faster. She is also constantly screaming in pain because her face hurts, with is both a real sunburn (because the Thorazine makes her extremely sensitive to sunlight) and psychosis because she acts like her face is melting off.

Most of the mid-day is spent trying to bring her back from this. Yesterday, our friend Michiko Rolek came over to help (we still have heard nothing from any of the social services that are supposed to help us-all they want to do is talk to us. We need them to talk to Jani. Jani’s “advocate” never even spoke to her). We were in Bodhi’s apartment when she melted down. By the way, her meltdowns are often caused by things like being told to wash her hands. Telling her to do things in the morning and evening are fine but telling her to do things during the mid-day is risky because her psychosis is at full-strength then (which is what I was not prepared for-all the progress made in the hosptial over four months is gone. It is like she is not stable at all). I tried to drag her into our bedroom for a time-out but realized Bodhi’s apartment isn’t set up to isolate Jani safely. The locks in the bedroom and bathroom of Bodhi’s apartment are on the inside, not the outside like they are in Jani’s apartment (I reversed them). Jani had me and Michi over a barrel and knew it. I tried to remind her that she was losing points and would not get a prize but she didn’t care or irrationally believed Susan would give it to her. This meant that she was already gone in her psychosis. I ended up having to pick her up and carry her down three flights of stairs and across the parking lot to her apartment. Thank God she didn’t struggle or hit or kick like she used to because I could not have done it, but she stayed still, which was a good sign. I got her into her apartment. I put her down and gave her one more chance to go to “group” with Michi (as meetings were called in the hospital). She agreed but then hit me, which was the two sides of her talking. The side that said yes is the actual Jani, who does not want to be alone. The side that hit was the psychosis, the schizophrenia, telling Jani that she is alone and they are all she has. So I had to put her in time-out, putting her in her room and locking the door.

We waited, tense, for her to start pounding the door or throwing things at it, but she didn’t. After a while she said she was ready to talk. We went in and talked. Once again, it was clear she knew she had done something wrong but not what. She was guessing at what she might have done.

When Jani was in the hospital, her friend and now schoolmate “Rachel” told her about how she deals with her hallucinations. She is eight and she told Jani she started using stuffed animals or dolls to represent her delusions and would walk around carrying the stuffed animal and talking to it, and no one would be the wiser. I thought this was a great idea because it occurred to me that the first step of Jani coming to terms with her hallucinations was to give them physical form. That way we could see her interact with them (and help her) as well provide a way for them not to be around her all the time. Jani, however, is resisting this idea, which tells me it is a good one. She wants her “imaginary friends” around her all the time because she feels alone. But you see, that is the illness, and that is what I tried to point out to her. Schizophrenia makes you feel like you are alone and so you interact with the delusions because you feel separated from real people. Schizophrenia has created a wall around Jani  and it is exhausting trying to take it apart brick by brick. It may be months yet before Jani is ready to embody her delusions in stuffed animals or dolls but it is the first step for her in making contact with the real world again.

Isn’t this…