We are waiting, and have been for a week now, waiting for Jani to be discharged from UCLA. This is a somewhat new experience for us because prior to the publication of the LA Times article, we had to fight to keep Jani IN UCLA. It was not that UCLA wanted to kick her to the curb but rather that that Blue Shield was constantly trying to have her downgraded to what they euphemistically refer to as “a lower level of care.” What this actually means is nothing. Literally. There is no lower level of care for a psychotic patient, not that Blue Shield has ever done anything to find such care for Jani. What “lower level of care” means to them is simply that they don’t want to pay anymore and so they are cutting off the money, and whatever happens to Jani or any other mentally ill patient is not their problem.

Legally, mental health is supposed to have “parity” with physical health, meaning that the insurance companies are not legally allowed to treat a mentally ill patient any differently than they would treat a physically ill patient. However, it is very easy for insurance companies to deny coverage for mental health services because mental illness is hard to diagnose and even harder to treat. It would not be so easy for an insurance company to deny treatment for a child with leukemia, but when a child is dying of leukemia it is sadly obvious. Blood tests, x-rays, and MRIs show the cancer. But blood tests, x-rays, and MRIs do not show mental illness. Mental illness must be diagnosed through observed behavior, which means that ultimately it comes down to opinion, and that opinion is the door by which insurance companies deny care to the mentally ill.

Nobody can argue a diagnosis of cancer, but it is easy to argue a diagnosis of mental illness, no matter the severity. Oddly enough, the argument doesn’t come from those providing care. It only comes from those who have to pay for it.

Not that Blue Shield has ever disputed Jani’s diagnosis. No. Their rejection of payment has been based entirely on the fact that Jani is not responding to treatment.

You see, that is the dirty little secret of American mental health care. If the patient does not get better within a few weeks of inpatient treatment, the insurance companies declare that the treatment is not working and discontinue payment.

Do they suggest alternate treatments? No.

Imagine, if you will, that a child had leukemia and that this child’s leukemia had not responded to the initial round of chemotherapy. Imagine, if you will, that the insurance company then cuts off treatment, forcing the child to go home to die.

Imagine how that would go over.

It doesn’t happen because there are wonderful facilities like St. Jude hospitals that will treat childhood cancers for free. Places like St. Jude will keep going until the child either gets better, dies, or the parents decide to stop treatment due to side effects.

There are no St. Judes for mentally ill children.

The problem for mentally ill children and their families is that the children are not obviously dying.

I am in no way suggesting that children who have cancer or a serious physical illness (and their families) have it easier. They do not. Every day I thank God that I can still hold my child. I know many parents who cannot any more.

Pain is pain. And there are plenty of parents of severely physically ill children who have had to do battle with insurance companies.

Physical illness or mental illness, the problem in America is always the same: bean counters make the decision that ultimately it is not worth the investment to save a life.

Your survival in America depends not on the severity of your illness but how much money your insurance carrier is willing to spend. In other words, can they make you better without having to spend too much money?

That is the lesson to take away from Michael Moore’s “Sicko,” not that health care is better in Cuba than it is in the US.

For the mentally ill, insurance carriers cannot see the light at the end of the tunnel. They cannot see remission of the illness and functionality. So they just stop.

However, since the LA Times article on Jani came out, Blue Shield has been strangely quiet.

Susan and I did not seek out the media. We didn’t have the time, what with trying to keep our daughter (and son) alive. But now that the media is here, we see an opportunity. The mental health system of support failed us, which means that sadly we must turn to the media to get what we couldn’t get from American mental health care: help. Not that I believe that somewhere out there in America there is somebody who can save us if only they could see us on TV. I think I have made it pretty clear in my previous blogs that I don’t believe there is a “magic” cure out there or somebody will all the answers. But what I believe is out there is effort, the effort and will to fight for change. And that is why Susan and I are opening our struggle up to selected media outlets: to make the rest of the country and the world know that there is  a problem here. I am not asking America to save my daughter. No one person can do that. But maybe all of us together can at least make her life easier, and the life of all the children of the all the parents who face similar struggles.

We can make life easier, even if we can’t cure schizophrenia or bipolar or autism or childhood leukemia. We can make life easier. We can give these children happiness.

Back to waiting for Jani to be released....

The holdup is not Jani herself. Jani has not magically turned around thanks to the Clozaril. I cannot say that everything is going to be fine from now on and that I think we will be able to get back to whatever lives we had before Jani’s schizophrenia starting stealing chunks of her life.

What I can say is that Jani is functional.

If you are not aware, it is not the goal of psychiatrists and psychologists and social workers to “cure” mental illness. That is the Hollywood ending to the story of mental illness, but that is because Hollywood movies do eventually have to end. You have to let people out of the theatre eventually.

But mental illness does not end. Like cancer, there are periods of remission, and the goal is to make those periods as long as possible.

Nobody gets away clean from mental illness. You just learn to live with it, to “function.”

The goal of treatment is to get Jani to the point where she has a shot at a fulfilling life, to even the playing field so to speak, to give her a chance at as a normal a life as she can achieve. This means although UCLA would love to completely eliminate the violence, they will settle for reducing it to manageable levels, which then requires us to all agree on what constitutes a “manageable level.” For Susan and myself, since we have already split the children into two apartments and Jani has her own space and Bodhi has his, this would mean one to two violent incidents A DAY, of a duration of approximately 10-15 minutes each. For us, this is manageable. We can help Jani get through these incidents, because we know that when Jani becomes violent we can keep Bodhi away. Because of the two apartments, this level of violence is manageable. When Jani first arrived at UCLA back in January, we had been dealing with (and UCLA subsequently dealt with) 10-12 incidents of violence per day, of duration lasting anywhere from 15 minutes to several hours.

Six months later, we have collectively gotten Jani back to at her best sometimes no acts of violence per day and at her worst one incident of violence per day (which I would expect to slightly increase at home due to the inability to provide Jani with the extreme level of stimulation and structure that is available at UCLA because of a larger “staff.”) Home will never be as good as the hospital. I have accepted this. But if Jani can have only one to two incidents of violence per day at home she can still function. We can still work with that.

Inhibiting the violence is also important so Jani can function outside of the home. She cannot be hitting too many people outside of the home, such as kids and staff at school. Jani has to have at least some ability to deal with the stressors of life outside the hospital, such as spilling food and drink on her clothing, not being first in line, and being in a class with all boys without hitting them. All kids have a hard time dealing with change, but for Jani this is magnified by her thought disorder which prevents her from always being able to rationalize.

I will give you an example.

On Wednesday, we were meeting a reporter from the local Fox affiliate here in LA.

Actually, before that, let me explain how we handle requests from the media. All requests by media are routed first to our friend Stacey Cohen, who handles media contacts and other publicity of Jani’s story. We do this because our time is taken up with Jani and Bodhi. Between daily trips to UCLA to visit Jani, phone calls and meetings with Jani’s doctor and social worker, and trying to provide Bodhi with some semblance of a normal childhood in the face of his sister’s mental illness, we don’t have time. So Stacey and UCLA Media Relations sift through the requests and then contact us to see if we are interested. Whether we are interested depends on who is asking and what they want. Of course, they all want to film Jani, which is not always possible or even desirable. Jani is not a freakshow. She is an incredibly strong little girl fighting the most severe mental illness known to man. So Susan and I make our decisions based on what the media outlet is interested in doing, what their level of commitment is to telling the story, and how willing they are to work around Jani’s care.

Because they do have to work around Jani. UCLA forbids (and rightly so) filming inside the Unit to protect privacy, which means that Jani can only be filmed when she is off the Unit, and whether she can leave the Unit depends on her doctors, us, and Jani herself. If she is not in the mood to go on camera, she will not go on camera.

The media commitments that we have made so far have all been to those who are interested in following Jani (and us) over the long term AND who are sensitive to Jani’s situation. It doesn’t do Jani (or children like her) if she goes on camera once, then to be forgotten the next time another celebrity gets arrested. Jani will have to deal with her illness for the rest of her life, so if you want to film her, I want to make sure that you are still going to be there in a year, two years, five years, ten years down the road. If you are going to come into our lives, into Jani’s life, you are going to have to make the same kind of commitment we have made to Jani.

As I said, the media contacts all want to film Jani. But, oddly enough, even when they can’t, they still want to meet her. This is not because they doubt the story, although I could understand if they did. If I wasn’t living this, I am not sure I would believe the things that we have seen Jani do or that we’ve had to do to keep her alive. I wouldn’t believe it at all if I hadn’t seen it with my own eyes. How can a nearly seven year old girl possibly have schizophrenia?

So, yes, there is the natural fascination of wanting to see such a child with one’s own eyes. But if I felt that that was their only motivation, I wouldn’t let it happen. They want to see Jani because her story has touched something within them, something that challenges their objective distance and  even cynicism. The few media who have been allowed to meet Jani greet her with almost a sense of awe. And all of them have seen the child inside the illness and any expectations they have fall away. Jani has that affect on people. Everybody who has ever met her has felt she is special, and what makes her special has nothing to do with her illness. It is something naturally within Jani. People like her. They always have, even if she was violent with them.

They come away from meeting her even more committed to telling her story, even though during their time with Jani she did nothing to “display” her illness. It seems like the more “normal” Jani comes across, the more they want to tell her story.

In order to tell Jani’s story, you have to see the human being that she is. You have to see who she is separate from the illness.

Jani is probably about as stable as she is going to get at this stage in her life. When her Clozaril levels finally came back from the lab, it showed she was right in the middle of the therapeutic range, which means it is unlikely that her “relapse” last weekend was the product of her cheeking the meds. This has certain ramifications. It means that the Clozaril has reached therapeutic levels and has “plateaued” in terms of modifying her psychosis, which in turn means that Jani is about as good as she is going to get on the Clozaril. Jani’s violence has decreased sharply, but has not completely gone away. Jani still talks about her hallucinations, but not nearly as much as before (although some days are better than others). She is, for the most part, “redirectable” as they call it, not only in terms of being able to correct her behavior but also in the ability of others to distract her from her hallucinations.

It means that she has, we hoped, reached a level where we can at least manage her outbursts, hallucinations, and disordered thinking, and where she can engage with her peers at least part of the time.

For Susan and I, this is not “Yea! Everything is fixed now!” but rather “Okay, I think we can get by now.”

That is our goal: to get by.

Our concern regarding her release was that we still have no respite care to give Susan or myself breaks from Jani. Why would you possibly need a break from her when she has just been in the hospital for over a month, you might ask? Well, Jani still requires constant stimulation. If you do not engage her every second of every minute she is awake, she will slide back into psychosis. She cannot be left alone. Ever. She cannot watch TV or color or play with her toys by herself because any time she is alone the Rats and Cats and imaginary girlfriends come to play with her.

Jani cannot be left alone. Ever. I know I already said this but I have to say it again. The risk is just too great that she will run into traffic or crack her head open jumping off the furniture because one of the Rats is doing it. Jani exists partially in a different reality that will take any opportunity Jani gives it to butt into our reality.

Imaginary rats don’t get hurt jumping off furniture or flying. Jani will.

It is hard enough to have to take care of somebody around the clock. It is impossible to engage someone every second for fourteen hours a day.

The things that used to engage Jani, like play areas and Toys ‘R Us, don’t work anymore. It is not that Jani doesn’t try. When she is home, and we are doing an activity or are out somewhere she wants to be, and we see the tell-tale signs that Jani is slipping away, we immediately suggest a new activity, and Jani always gets excited. So we go, and she can’t to get there, and she runs in...

and then she suddenly stops. She surveys her environment and you can actually see her trying to find something, anything, that will shut out whatever it is she is hearing. She will pick up a few toys and put them down, then look up at nothing in particular, with what looks like a sad, wistful smile on her face. And then she will walk around listlessly, head raised, sometimes shaking as if she is disagreeing, staring up at something we can’t see. We watch her, in those moments, give up. It is the most awful thing I have ever seen in my life and it breaks my heart. And I grab at some toy and call her over, desperately trying to engage her. I keep talking to her, playing with her, working every second to keep her here. Sometimes it works. Sometimes it doesn’t.

When it doesn’t work, Jani says she is ready to go. And so we do. And in the car on the way home, Jani starts talking to and playing with the Rats.

The most painful moment is not when Jani is talking to animals and people who aren’t there, because she is happy then. The most painful moment is not when she hits or kicks us or Bodhi, because she is not sane is those moments and that insanity protects her from realizing what she is doing.

The most painful moments are the moments when Jani realizes that the world around her is not enough and she just can’t fight it anymore.

Those are the moments that rip my heart in two.

Those are the moments that I am trying to stop, and I can’t do it alone. It takes constant effort to work through those moments. Nothing helps other than time and energy. I got the time. I got all the time in the world for Jani.

It’s the energy that is a problem.

I can’t go fourteen hours like that, constantly engaging, without a break. Neither can Susan. And the only break we can get is when Jani goes to school (and it is a limited break since during her two weeks there we came every day for lunch, hoping that we could help her deal with the irrational thinking that made her hit the boys in her class).

But school doesn’t start until August 12th. Yes, this is pretty early, but I am still very fresh from the last time Jani was out of the hospital. When she was released on June 1st, there were two weeks of school left. We managed through those two weeks, although as you know they were not easy. I cracked and tried to swallow my entire bottle of anti-depressants, and that was while she is was still going to school. Once school ended, there were no breaks and no respite. We lasted two weeks.

There is still no respite. We begged Wraparound and the Santa Clarita Child & Family Center (the contractor with the Department of Mental Health to provide legally mandated services for Jani in order for her to function outside of the hospital) for a class or activity that we could bring Jani to, such as cognitive behavior therapy or social skills classes, that would occupy Jani’s mind and give us a break.

They told us that there is “nothing out there.”

Which means the buck stops with us.

UCLA, more helpful than Wraparound, decided to try and get Jani into their ABC day program, an outpatient program. Jani’s doctors and social worker have been trying to get her into this program since February but ABC wouldn’t take her because Jani was still too psychotic for them (but not too psychotic to come home). If Jani is still hitting, she cannot go. If she is still running after her hallucinations, she can’t go (because the facility is not a locked one). The second reason is really an excuse because they don’t let kids leave obviously. The real reason they wouldn’t take her is the first reason: the violence. They just didn’t want to deal with it.

So Blue Shield wanted Jani downgraded to a lower level of care, such as the outpatient ABC program, but the ABC program felt she was too psychotic and wouldn’t “succeed” there. That pretty much sums up the last six months.

Now, the ABC program is finally willing to consider taking Jani. She was supposed to be taken over there for a few hours each day last week so she could get used to it. Jani has a thought block about the ABC program (her friend “Rachel” has been there and tried to convince Jani to go, as have other girls who have come and gone on the Unit, but Jani refuses even though her real friends are over there) so we suggested that she not be told that she was going to the ABC program but just that she was being taken for another activity. Susan and I had been over to check it out and we thought Jani might do okay there. It would also give Jani something to do (and us a break) until school started.

Every day passed last week and ABC never came over to get her. On Tuesday it was that it was a “special” day and not the usual schedule, so they didn’t think it would be a good day to bring her over. On Wednesday, a kid over there was having an “incident” and had to come back over to the inpatient unit. By Thursday, we were being told that they weren’t going to bring her over but the occupational therapist from ABC was going to come over to the inpatient unit to work with Jani. We have heard nothing more since.

I am getting the feeling that ABC really doesn’t want Jani.

And so Jani is still inpatient. At this point we don’t give a damn about ABC anymore. Sure it would be nice and maybe helpful to Jani but it shouldn’t be this f*cking hard to get her there. We want her home for her birthday (which is this Saturday) and school starts a week from Wednesday (and school is our only respite at this point). We can work 14 hour days keeping Jani occupied for a week. We can do that. It won’t be easy but we can do it because we at least know (hope) that when Jani goes back to school we will at least get that six hour break per day.

This Friday is another IEP Jani’s school, which we requested to make changes to their behavioral plan for her. Currently, she is getting “level drops” (punishment) for hitting, which I understand except that Jani can’t control it. If she can’t control hitting her brother how is she going to control hitting a stranger? Just imagining that Bodhi is getting into her stuff is enough to make her go after him. (Jani believes that Bodhi can bite through her plastic toys. She thinks that his teeth are stronger than the average human even though I have tried to assure her that plastic cannot be broken.)

I understand rewarding Jani for times when she actually manages to control herself (by defeating the voices in her head) but it does no good to punish her. That makes her depressed and she feels bad, which in turn makes her more susceptible to 400 the Cat and Wednesday the Rat who tell her she is a bad kid.

The school district understands that this is not a behavioral issue. They understand that Jani doesn’t hit because she doesn’t know it is wrong. She knows it is wrong but can’t help it (sometimes). They understand all this but their behavioral plan, a one size fits all plan, has been slow to adapt.

Collectively, the school district is going to have to come up with something unique for Jani so she doesn’t spend her life in the hospital (and is therefore prevented from getting the equal education she is guaranteed by law). Should the district have to do all this? No. Jani should be in residential care, but no facility inside the State will take her.

Because she is too psychotic.

And so it comes back to us and the school district.

Until they expel her. And the only thing that will stop that is the media attention.

And so we return to the media. Despite not being able to go to the ABC program, Jani’s doctors felt that she was okay to leave the unit to appear on camera for Fox. Jani does have hospital privileges, which means that she can leave the Unit, escorted, to move around the hospital grounds. Some days, they take the kids down to the gift shop to buy a candy bar. Jani has been able to do this because she does not try to leave.

UCLA Media Relations informed us that there was a play area in an adjacent building, so arrangements were made to take Jani there. When we arrived to get her, she was on “the deck,” an enclosed outdoor area on the fourth floor of the hospital. Jani’s entire life revolves around the deck, so it took some effort to get her off the deck. We waited for what we were told by the staff was a “transition period.” This is another euphemism, as I suspect that Jani probably had a meltdown at the idea that she had to leave the deck early (despite the fact that they would go again two hours later). I had no issue with letting Jani be. If it meant that Fox couldn’t get tape of her, so be it.

But twenty minutes later, Jani comes out with one of the nurses, as happy as a clam. We go over to the other building and Jani meets the reporter and cameraman. The media relations person leads us up to the second floor and outside to quite fancy play area attached to the pediatric clinic. It had slides and all sorts of things to climb in, on, around, and through. We had no intention of making Jani sit for an interview (not that we could anyway). Jani let herself be miced for a minute because she was interested in the remote mic. The reporter explained how it worked to Jani and she listened. Jani was asked if she would like to answer some questions. Jani agreed, but I could see that she was a bit dubious. Jani’s concern at this point was that we get back to the Unit in time for her to go out on the deck again. Keep in mind we are OUTSIDE the Unit, at a fancy play area with equipment not found on the deck, and this is Jani’s first time off the unit in over a month, and her concern is getting back to the unit so she can go out on the deck and play by herself (she won’t play with the kids) with no toys and no equipment.

The reporter managed to ask two questions before Jani announced she didn’t want to talk anymore. I took the mic off her and she went to play. I went with her (Susan was keeping an eye on Bodhi). My focus was on keeping Jani engaged, not on the interview, so most of what Fox got was my back. I was wearing a mic, but I never talked. I was playing with Jani.

Jani seemed depressed that day. She did tell us that the meds made her friends go away, which is why I think she was depressed. She talked about Saturday the Rat and 24 Hours the girl, but told us that they had gone on vacation. She was definitely sadder. It was another one of those moments. She was trying to enjoy the play area, but it just wasn’t enough. And so Jani talked about Saturday the Rat and what she had been doing.

Eventually, she wanted to leave and ran off, the nurse pursuing.

Where did Jani run? Back to the Unit. And the deck.

I answered a few questions for the Fox reporter but my heart wasn’t in it. I was depressed because Jani had been depressed.

Thursday was the family meeting at UCLA with the doctor, the social worker, and a medical student doing a rotation through psychiatry. They told us that they were not releasing Jani yet because they were still waiting for ABC and since they were waiting they would rather continue to monitor the Clozaril there. We talked about what the Stroke Team had determined regarding Jani’s risk of future stroke events like what happened to her thalamus (negligible- they felt it was a one time event) and when and how it might have happened. We learned that Jani’s brain is fragile anyway (because of the tendency to psychosis) so this might have caused the stroke in the thalamus during gestation or birth. We wanted to know if there was any chance the ischemic thalamus had caused the schizophrenia.

We were told not likely. There is no evidence to suggest a link between brain injuries and schizophrenia. We probably all have lesions in our brains. It’s just that most of us never get an MRI and find out.

On Friday, we met with some producers from ABC’s 20/20 who are interested in following us over a long period of time. Again, the plan was to bring Jani over to the play area in the adjacent building.

This time since we had met the producers earlier, we invited them to come with us onto the unit to give Jani the food we had got for her. They came in as guests and did not film. Jani was in a good mood and was happy to see us, Bodhi, and the producers (when not psychotic, Jani is very social). Jani ate and things were going fine. We were just waiting for the doctor to give to write an order for Jani to leave the unit (she had just forgotten-she was actually going to meet us at the play area because the producers wanted to get some footage of her interacting with Jani).

During the wait, Bodhi found a postcard of panda Jani had. And tore it. Just a little bit off the corner.

Jani melted down. She went after Bodhi, necessitating Susan rushing him out of the room. I kept calmly telling Jani that it was no big deal; I could fix it with tape as soon as Jani calmed down. But once a thought has started to loop in Jani’s head, there is no stopping it. As far as Jani was concerned, the postcard was destroyed and my attempts to tell her I could fix it were met with hitting.

And then Jani did something that shows how much she is trying to fight this.

She dropped to the floor.

She could not stop her fists from hitting and her legs from kicking, so she dropped to the floor and lay there, her limbs still lashing out, but harmlessly unless we came in range.

Jani used to run after whomever was the target of her violence. Now I have noticed that when she becomes violent, she puts herself on the floor. She has never said she does this to stop from hitting people, but I think that is why she does it. Of course, I came close to her, hoping that my calm rationalizing with her would cut through the thought loop. This prompted her to come after me. I backed away but she clamped on to my calf and squeezed her nails. The skin broke and I was bleeding, although I didn’t realize it because I was still trying to get Jani to calm down.

The nurses were trying to remind Jani, who had established a goal for herself not to hit, that she had agreed to hit the pillow.

The nurses engaged with Jani, who kicked and hit at them from the floor, while I got tape and taped the postcard back together. I showed Jani, hoping that this would calm her, but she cried that it looked ugly now and continued hitting.

Remembering what I had been told about Jani’s self-goal of hitting the pillow instead of Bodhi or anyone else, I got the pillow and pretended it was attacking her. I made the pillow anthropomorphic, using the edges for its arms, and pretended it was lightly throwing punches (I did this through punch sound effects and not by actually striking her with the pillow). I even chastised the pillow for trying to hit Jani.

Jani laughed.

The psychosis let her go and the thought loop was broken.

One of the nurses suggested we tape the postcard to the wall high enough that Bodhi could not reach it. She asked where Jani wanted it. Jani got up and pointed.

It was like nothing ever happened. Jani was sweet and ready to play again.

The 20/20 producers had seen this, but could not film it.

The rest of the taping/visit went fantastically. Jani seemed much happier than she had on Wednesday. Susan, Bodhi, Jani, and I had fun playing. Jani talked briefly about her imaginary friends but not much. Jani played a game of Chutes and Ladders with her doctor which was taped. She asked me if I would play too but the producers wanted to get Jani interacting with her doctor. Jani was fine with this and said she would hold a place for me. Her doctor asked her questions about what she was going through and Jani answered very comfortably. She pointed out some sparrows and we fed them some crackers. Jani never said she wanted to leave (as long as we were back on the unit in time for the deck). Jani actually had a great time and so we had a great time.

It was only later that I realized I was bleeding from my calf where Jani had scratched me. 20/20 filmed the wound. I told them that Jani’s incident at the beginning was relatively mild for her. It had been a good day.

The weekend visits were great too. Jani seemed ready to come home.

Today, however, we had another episode of violence. I visited Jani with Bodhi and Jani’s Zen Little Mama, Michiko, and her daughter (Susan took the day off). Unlike the previous days where Jani had been relaxed around Bodhi and having fun with him, today she was back to the paranoia of him getting into her stuff. Overall, Jani seemed happy, but when Bodhi got a hold of one of her art therapy projects, she  hit him. I moved her away. Usually she only hits once now and she is good, but this time the more I tried to stop her from hitting Bodhi, the more she tried.

Still, she was able to be distracted. Seconds later, she was kissing and patting Bodhi like nothing had happened. Her violence is preceded and proceeded by great affection. The violence comes, but before there is no warning and after there is no sulking.

She did mention Wednesday the Rat today for the first time in several weeks. I asked her if Wednesday was around now. She said no, but she had seen her the night before when the kids on the unit were watching a movie that Jani didn’t want to watch. I asked her if Wednesday comes around when she gets angry. She said yes.

Jani was not as present today. The doctor had told us that this basically there would still be incidents, but hopefully not as severe. And Susan and I are learning not to read too much into good days or bad days.

They are just good days and bad days.

Jani went to the deck at 4pm, ending our visit. She came back a few moments later because the drinking fountain out there was broken and she wanted a cup of water so she could make her Littlest Pet Shop toy cat pee. Unfortunately, she spilled a little bit of the water on her shirt.

Another meltdown.

It was hot humid day so I asked Jani if she wanted to still wear the shirt to stay cool, but Jani wasn’t listening. She was lashing out at anyone around her as she pulled open her drawer and threw clothing around.

Michi and I tried to help Jani pick out another shirt, but this only got us hit in the back several times. Jani wanted to pick out her own shirt. She was crying, raging, and afraid she would miss the deck. Nothing that we could say to assure her she wouldn’t helped. It was another thought loop.

Michi and I backed off. Interestingly, Jani, although still in the meltdown, chose a shirt that had been a gift from Michi. I think this was her way of trying to show that she appreciated  Michi and her daughter coming to visit her. But any attempt to get close to Jani resulted in her dropping to the floor again, limbs lashing out blindly.

Rather than try to calm Jani down, the staff decided to just go on with the day and take her back out on the deck. Apparently, once Jani was back out on the deck, she calmed down and talked to the staff about why she had become violent.

It was because she was afraid the other kids would return from the deck before she got out there. Jani never plays with the other kids but she seems to like having them around. I think the noise of their play quiets the voices in her head.

Of course, her reason for becoming violent made no sense, but at least Jani did get to a place of talking about her thoughts. At least she was able to articulate her fears and thoughts, even if it was after the fact.

The hope is one day she will be able to do it before.

So we go forward from here. Some days Jani can resist her illness. Some days she can’t. Not every one can be strong all the time, even somebody as strong as she is.