Tonight I came out of a restaurant with Susan, Jani, and Bodhi. Because Jani has no ability to wait for anything, we always order Jani’s food at the same time as everybody else orders their drinks. We do this with Bodhi too but he eats continuously until we leave the table. Jani, on the other hand, asks where her food is before we have even ordered it. It is one of the many periods of irrational thinking that show up during the course of the day. Jani knows logically that food can’t come until it is ordered but as soon as she is at the table she can’t seem to accept the time delay. It is not like she doesn’t understand. Before we go in, Jani always informs us of what she will do while she is waiting (like playing with her toys or with Bodhi) but as soon as she sits down something clicks over in her. It is not like the toddler or young child version of not being able to wait. Remember, Jani is seven. She doesn’t get angry because the world won’t provide her immediate gratification. There is a desperation in her complaints, regardless of how recently she has eaten. Historically, I respond by trying to engage her and distract her by whatever means are available to me. I have played table soccer using sugar packets. I try to teach her. For example, in Olive Garden the kids menus come with interesting factoids and maps of Italian cities, which historically has allowed me to engage her by teaching her something about Rome or Florence or Pisa. My teaching her used to hold her, but it doesn’t really work anymore. It has taken me awhile to figure out why.

Jani’s ability to focus on anything in our world has progressively become more impaired.

More on that later, but right now back to dinner. Conversation with any other adult at the table, including Susan, is impossible with Jani, not because she will interrupt. I would be fine with that because it would show she was at least present enough to interrupt us. If Jani is trying to talk to us, we always listen. We never tell her to wait. Well, we do sometimes, out of the basic desire to finish a train of thought, but then we correct ourselves and break off in mid sentence from whomever we were talking to and talk to Jani. This makes phone conversations during Jani’s waking hours not only impossible but flat out dangerous to Jani’s psychological well-being. This is because Jani cannot simply entertain herself by coloring or playing with her toys. Because Jani is never alone in her mind. The moment we or any other flesh and blood person stops talking to Jani, something else does. And Jani’s entire demeanor will change. At best, the expression on her face will shift. She will develop what parents of severely mentally ill kids refer to as “the smile.” Jani develops a strange smile on her face, completely unlike her normal smile. The mouth corners actually turn down, the face turns up, and her eyes close, similar to how a person might try to smile through physical pain. Then Jani will “act out” as armchair behaviorists (anyone who works for the school district) refer to it. She will go under the table (or her desk at school). She will bop Bodhi on the head. Or she will open her mouth and move toward me, Susan, or Bodhi. Often we don’t realize what she is doing until her teeth are hovering an inch over my arm or shoulder with her lips bared to reveal her teeth opening and closing in an affected chomping style. There is a moment of hesitation over the flesh which can be mistaken for waiting for a reaction because her eyes are looking up at me, but her eyes are vacant. What actually causes the hesitation is that something else is in control of Jani’s body and she is making her last attempt to resist it.

Whoever came up with the idea that kids act out for attention set back the course of child mental health by decades. Two year olds act up for attention. Kids beyond the age of five do not commonly, and rarely beyond the age of seven. This is one reason why psychiatrists hold off on diagnosing kids for as long as possible, to separate what is normal child behavior from that which is psychotic in nature. Unfortunately, school districts are about two decades behind the science, because university bachelor level child development programs are about two decades behind medicine, biology, and research in brain development. “Child Development” still uses the linear models of development derived from Erikson, Piaget, etc which are almost a century old. Modern brain research and the mapping of the human genome have weakened the role of environment in who we are. As much as I loved Erikson in college, his stages of development are not the end all of development, given how the brain and body increasingly appear that they do they own thing regardless of the environment.

Seven year olds do not generally (notice I said “generally”) act out for attention because typically by seven, particularly with girls, external social pressures are beginning to act upon the child. In other words, it is not the parents exerting influence by this time but friends and the larger social network. Seven year olds have become aware of social hierarchy that exists within the school yard and their position within it. By seven, they are trying to move up the hierarchy.

To “act out” is counter to carving out an identity within the hierarchy unless such actions illicit approval from a fringe social group (like the “bad kids” who have already found themselves outside the mainstream). For Jani, there is no fringe social group that approves of her actions. She is not trying to carve out an identity. Even if she had something to identify with, she seems unconcerned with any “real” (meaning flesh and blood) social group. She is not making a choice to reject the hierarchy. A lot of us did this as teenagers, but what we were really doing is just rejecting the mainstream hierarchy. Jani can’t actually see the hierarchy. For her, it, like everything else in our world except for animals, simply cannot compete with her fantasy world. Jani will shut down relationships with any adult that doesn’t go into her world. Even more interesting, she will invariably ignore the real world except for animals and babies, I suspect because their lack of language allows her to reconcile them within her world.

The point is that the real world is increasingly becoming irrelevant to Jani, something that was not the case at two years old. Jani was acutely aware and sensitive to others around her up to the age of three. In fact, her needs seem to come second to the world around her. Starting at three, she went backwards to the point that now she is more like a toddler than she when she actually was a toddler in the sense that Jani’s interaction with the world is often limited to her basic needs (food, bathroom, sleep).

I realize I am stating all of this in a coldly intellectual way. It is a defense mechanism. Right now I have detached myself emotionally and am looking at this as if I was an outside observer because in reality I am losing this War. I am losing my daughter. To allow myself to feel that way would render me useless. Part of being Jani’s advocate, part of fighting for her, means that I have to suppress some of my feelings.

Back to dinner tonight. Jani was moving constantly. When sitting, she will often clasp her hands and rapidly roll her wrists at a speed I have never seen anyone be able to do. Other kids will often watch Jani and try to replicate it but be unable to do it. I believe it is probably impossible to consciously do it. This is not a “tic” brought on by the medication because it existed long before Jani was ever on any medication. At seven months old, Jani began waving her arms almost constantly. By 18 months, this had evolved into constant clapping, to the point that her hands would turn  red. By two and a half, it had become the wrist rolling (Jani didn’t start any medication until three years later). The constant hand movements would often make doctors think she was autistic, although she didn’t meet any of the other diagnostic criteria. Jani’s obsession with numbers also fooled medical professionals for awhile until it was realized that she actually saw numbers even when no numbers were physically present. Her only obsessions are with her hallucinations. There is nothing in the real world that she hyper-focuses on.

Looking back now, I realize that Jani’s screaming for no reason and constant need for excessive visual stimulation in the form of crowds abated at seven months... when she began the arm waving. I think it was only then that she was able to distract herself from whatever she heard and saw up until then. The wrist rolling is not a form of “self-stimulation” in the traditional sense. It is her attempt to distract herself from her hallucinations through extreme physical movement.  The wrist rolling pushes the hallucinations back.

She kept asking for her mac n’cheese, but not in a whiny way. She wasn’t impatient for it to come because she was extremely hungry. I have become aware that Jani eats almost constantly. Tonight, she kept sucking on Jolly Ranchers. She would unwrap one, suck on it for a few moments, spit it out, then unwrap another. It was only tonight that I realized what she was doing. It is another form of distraction and it explains why Jani rarely eats very much at one setting. The arrival of the food and the initial digging in gives her a few moments of peace because something in the real world is engaging her in activity. After a few bites, it loses its effect. Lately Jani has been ordering desserts that she doesn’t eat. They arrive and Jani realizes she is full. It is the anticipation of the food arriving that she depends on, not the food itself.

I tried to keep her distracted while we waited for her food, but it is getting harder, as I said. Teaching is not enough for her anymore. The hallucinations are too insistent for her to pay attention to what I am saying, even if I am using physical objects. My only thing that still works to engage her is to ask her about her hallucinations and what they are doing or have done that day.

What happens if I leave Jani alone, you ask? I will tell you.

Jani’s food arrived and she ate her few bites before our food had arrived. We tried to get her to focus on another food item, like breadsticks, and Jani tried, taking a bite, but it wasn’t enough. It is difficult to engage her in conversation and eat at the same time because Jani speaks so fast that we can’t take a bite while she is talking. Eventually, in order to eat, we had to stop talking to her. Jani began turning her head 180 degrees, looking behind her over one shoulder and then the other. If you weren’t watching you would think she was looking at the other patrons, but she wasn’t. Her eyes were looking above them, toward the lights in the ceiling. It looks like Jani is trying to watch a tennis match going on behind and slightly above her, maybe ten feet off the ground.

The she slipped out of her chair, so quietly that we didn’t notice she was gone at first. She went over by the kitchen, but didn’t look in. Her eyes were focused on an empty space. She moved over to another corner and stared at the blank wall (there were no pictures there). Finally, she began moving back and forth behind our table, her head up and moving side to side, her eyes moving back and forth, as if again following something we couldn’t see slightly above her.

Then she came back over to me and complained that she was tired. I often for her to lean her head on my shoulder. The next thing I feel is her teeth on my left ear lobe. It wasn’t painful. She didn’t bite down hard but I could still feel it. I turned to her and she was staring at me, “the smile” on her face. But she wasn’t really staring at me. She was staring through me. I made a joke about her eating her daddy and she seemed to snap back to present and laughed as if she had just gotten the joke.

And she started the wrist rolling again, which we hadn’t seen during the entire time she was “absent.”

And that is how it has been since Monday when Jani was released from UCLA. She has been in and out of our world (and I don’t mean Susan and me-I mean the larger world) but mostly out. Over the last weekend before her release, she was mostly present during our visits. She was playing and having fun with us. The nursing staff and the doctors were reporting she wasn’t talking much about her hallucinations, although her roommate and friend Becca said differently, telling us that the hallucinations were very much present. 80 the Girl and 24 Hours the Girl had returned from Calalini. However, when we came to pick her up on Monday, the hallucinations were very present, including, most disturbingly, Wednesday the Rat. After her last hospitalization, it took four weeks for Wednesday to reappear, but this time she told us as we came down that Wednesday was sleeping in her bag. She told us that that morning Wednesday had been chasing her around trying to bite her because she (meaning Jani) was being nice.

She seemed very much like she did on the days after the med nurses at UCLA had failed to make sure that she actually swallowed her dose of Clozaril. At least twice that we know of during her stay, the med nurses gave her evening dose (the larger one) and then left the room without having her open her mouth to show she had swallowed. She spit it out. The first time another nurse found the pills in her bed the next day and the second time Becca recovered them and put them in a drawer. What happens is Jani puts the meds in her mouth and takes a swig of water. If the pills get stuck on her tongue and don’t go down with the first swallow of water, Jani tastes them because they are stuck on the center of her tongue. Rather than ask for more water, she does what most kids would do and spit them out. She then takes more water but doesn’t pick up the pills, forgetting about them.

When we asked Jani if she had spit out her meds Sunday night, she said yes. I called the unit and asked if any pills had been found. They hadn’t, but her bedsheets had already been pulled. The nurse who gave her her meds Sunday night, according to the team leader, is a long time worker who is great with the kids and typically very good with the meds. I then asked Jani if she was thinking of the previous week when she had spit out her meds and she said “Oh, yeah!”

I don’t know who was telling the truth, Jani or the UCLA nurses. Part of the problem is that Jani’s grasp of reality is now so tenuous that she does tend to confuse days, weeks, even years. Jani used to have an excellent memory, photographic even. Now she has trouble remembering what happened earlier in the day. She will forget what she just said to me a few moments ago.

I would like to believe the anti-psychiatry crowd who claim that this memory loss is attributed to the meds, but their claims ignore the fact that schizophrenics and bipolar individuals in a psychotic episode do lose short term memories, medication or not. In fact, studies show that any medication that can successfully inhibit psychotic episodes also inhibits memory loss. It is the psychosis that robs people like Jani of their memory because the part of the brain that retains short term memories is inactive during psychotic episodes. Why do you think criminals sometimes can’t remember committing a crime in the heat of passion? Because the “heat of passion” is actually a psychotic break. The primary personality goes inactive, which is why the neighbors of some guy who went nuts and killed his entire family say things like “I’m just shocked! He was always so quiet!” when interviewed by local news.

On Tuesday I adopted four guinea pigs in a desperate attempt to provide Jani with something that would keep her in the present. She was excited to get them in the morning. On the way there, I was asking her about a prize she had won the previous day and she put her hand up.

“Please, Daddy!” she begged. “I just want to talk about the guinea pigs!” It as if talking about anything else but guinea pigs was life endangering for her.

Unfortunately, the guinea pigs were much like the desserts that Jani orders but doesn’t eat. She was engaged by the process of naming the guinea pigs. She asked me to bring them out of their cage to play. I reached for the first guinea pig, her favorite, and put her on the floor. Jani watched the guinea pig sniff for a second. Then she stood and said she wanted to go to a local park to play with Honey, our dog.

I said “Don’t you want to play with Goldy?”

“No, I want to go to the park and play with Honey.” She headed for the door and I had to hurriedly put the guinea pig back.

I watched Jani during that second that I put the guinea pig on the floor and she didn’t do anything. Jani’s face fell and her eyes darkened. Just as they did the first time she met Bodhi. At first she was excited to have Bodhi. Then she realized that Bodhi was just a baby and couldn’t play with her. Same thing with Goldy the guinea pig. She had hoped Goldy would be her friend, as her hallucinations are her friend, but neither Goldy nor Bodhi can do what Jani needs.

I get it now. Jani has spent the last three years looking for a friend who will play with her in the way her hallucinations play with her, who will do the crazy things her hallucinations can do, who will keep her entertained.

But it doesn’t exist. Every “failure” of a person or animal in the real world drives her more into the arms of her hallucinations.

And I don’t know how many more failures Jani can take.