Month: February 2013

30 Minute Life (The End is Not as Fun as the Start)

Last night I watched the Frontline/Hartford Courant piece “Raising Adam Lanza” on PBS. It was slightly less than 30 minutes in length, with the other half being taken up by “Newtown Divided,” about how the citizens of Newtown have divided over the issue of gun control.

 Link to Frontline “Raising Adam Lanza”http://www.pbs.org/wgbh/pages/frontline/raising-adam-lanza/

Link to Hartford Courant article “Raising Adam Lanza” http://www.courant.com/news/connecticut/newtown-sandy-hook-school-shooting/hc-raising-adam-lanza-20130217,0,5614292,full.story

At least I think that what’s the second part was about. I didn’t watch it. Frankly, I am tired of listening to the gun control debate. Or, rather, I am tired of the voices shouting to be heard over the din. The voice I really wanted to hear is a voice so quiet you have to put your ear to the ground, straining to hear any sound from inside the earth, desperate to hear something but knowing that whatever you hear is your own imagination.

 

I wanted to hear from Nancy Lanza.

 

Of course, she is dead and the dead can’t speak.

 

The piece started off with the number 26. 26 victims. President Obama read each one of their names.

 

Except there were 27 victims. Adam Lanza’s first victim, his mother Nancy, is left out.

 

This interests me. Why?

 

In 1999 in Littleton, Colorado, the students of Columbine raised 15 crosses. 13 for the victims and 2 for the shooters, set off to the side. Columbine High School acknowledged all the dead, even the two that killed the other 13. There is something deeply humanistic about that.

 

Oh, sure, I expect the media and the President to leave out Adam. But then I wonder, have they really looked at pictures of Adam Lanza? Because how can you look at pictures of him and imagine that same face, a face that looks overwhelmed by the world around him, wearing all black and battle gear, shoot his way into Sandy Hook Elementary and coldly unload on the staff, teachers, and children. Look up Seung-Hui Cho, the Virginia Tech shooter. Look at his darkly raging face in those photos he sent to NBC News the day he killed 32 people. Look up Eric Harris and Dylan Klebold. Look at the cold smiles. “Evil,” I would say, if I believed in evil. My point is that they made themselves look like killers. There is nothing of that in Lanza’s “deer in the headlights” gaze. It’s like one day he was a shy boy and the next day he was an inhuman killer.

 

There was absolutely nothing that the Courant reporters could find that could explain that transformation.

 

But Nancy Lanza was a straight-up victim, yet she is never included in the eulogies and memorials. Frankly, I expected more from the President of the United States. He’s a father. Is there no part of him that can empathize with Nancy Lanza?

 

Or, on some level, does he blame her, even subconsciously?

 

Let’s not kid ourselves here.

 

What did you ask yourself after Columbine? I tell you what I asked. “How could the parents have not known the boys were building pipe bombs in the garage? Surely, they must have known.” Given that the Harrises and Klebolds lived in big houses in an affluent Denver suburb and I was struggling to pay the bills at the time, I confess that socio-economic jealousy clouded my thinking. “Class warfare,” as Republicans like to call it. In this pre-Jani time, I was still angry over my own perceived slights from my father and others having been raised in a similar upper middle class neighborhood. “Of course they weren’t paying attention,” I said to myself at the time. “They were too busy keeping up with the Joneses, clinging to that upper middle class existence, to notice any pain in their sons.”

 

The arrogance of these statements really bother me now. How quick I was to judge. And I hadn’t even had children yet.

 

What did you say after Virginia Tech? It was a little bit harder to blame the parents because we know that his mother recognized he was “troubled.” But she turned to church. And I will be honest here. For me, there was a little bit of racism in my thinking then. I envisioned diminutive Korean parents, wailing and wringing their hands over their son’s actions, blaming it on “America,” wondering if they never should have left South Korea. I was condescending, thinking there was no way they could have understand mental illness.

 

What I find fascinating now is that I was projecting denial onto Seung-Hui Cho’s parents at exactly the same time I was deep in my own denial about Jani’s continuing behavioral change (she was three when Virginia Tech happened). I was as dismissive of their attempts to help their son as I was of those who suggested there might be something “wrong” with Jani.

 

By Tuscon (Jared Loughner), Aurora (James Holmes), and Newtown, I had seen what psychosis could do. I had seen how it could completely alter the personality of its victim in a matter of seconds, turning sweet into violent. By then, I had experienced my child being a threat to other children.

 

I guess that is what the President hasn’t experienced yet. I remember how protective I was of Jani when she was a baby, almost a bully in my defense of her from innocent but older children who were, like most four or five year olds, not yet in full control of their bodies. I remember glaring at mothers who wouldn’t call their punk five year old away from my precious little angel.

 

Come on, admit it, you parents of neuro-typical kids. How many of you have yelled at a kid that wasn’t your own?

 

And then, suddenly, you are on the other side of it. Other parents glare at you. They yell at your child. You hover over your child in social situations, ready at any second to swoop in AND PROTECT OTHER CHILDREN FROM YOUR CHILD.

 

And you feel those looks, those looks of “What kind of a parent are you? I wouldn’t let my child behave like that.”

 

I feel it because I never look them in the eye. I can’t. It’s not shame. I just can’t bear to see what I must have looked like at one time. So judgmental.

 

I guess President Obama has never had to protect other children from Malia and Sasha. He is lucky.

 

That is why I believe Nancy is left out of the death count. On some level, maybe not even consciously, people, even the President, blame her for what Adam did. On some level, you believe it is her fault. She took him target shooting at a gun range. She exposed him to firearms. She kept the weapons he used to kill the innocent children.

 

She, quite literally, put the guns in his hands.

 

I don’t own any firearms. I never would. I would not trust myself with them, let alone have them in a house with two mentally ill children. I keep the sharp knives high up on top of the kitchen cabinets that only I can reach. We have absolutely no glasses or glass cookware. All of our plates and cups are plastic. Even our butter knives are plastic (the good kind from Ikea). I keep the screwdrivers up high, beyond the reach of Jani and Bodhi. I even keep the fucking cleaning supplies on top of the refrigerator rather than under the sink.

 

So I wanted to understand Nancy Lanza. I wanted to understand the forgotten victim of the Sandy Hook Massacre. It wasn’t that I was looking to blame her. I expected to see clear evidence of mental instability that she willfully ignored, like I had done many years ago.

 

Except that is not what I saw.

 

What I saw shocked me, but not because of any mistakes.

 

What shocked me is that I understood everything she did. Because I have done everything she did.

 

Right from the beginning, she knew Adam was “different.” She brought a toddler Adam to his older brother Ryan’s Cub Scout activities. She would warn people not to touch Adam. No, not the “good touch, bad touch.” Literal touch. Adam hated being touched. He didn’t interact with other kids. He was lost in his own world.

 

Other than the touch thing, I might as well be describing Jani at that age.

 

By the time Adam was in kindergarten, he had an IEP (individualized education plan). IEPs are for kids who have issues that make it difficult to function in general education. Adam was diagnosed with “sensory integration disorder,” a diagnosis not completely accepted within the medical community (then again, neither is child-onset schizophrenia, although that is rapidly changing). I don’t know why he wasn’t diagnosed as autistic then. This was the mid-Nineties and we have to remember that autism wasn’t QUITE as widely known as it would become a decade later. Also, at that time the diagnostic criteria for autism was stricter than it is now. The prevalence of diagnosis today has a lot to with autism being classified as a “spectrum disorder,” eliminating the need for a child to have all the symptoms of classic autism (non-verbal, no eye contact, etc). Since Jani was diagnosed, schizophrenia has also moved toward a “spectrum,” as increasingly psychiatrists feel the determining factor of diagnosis is not the symptoms but how much those symptoms impair functioning. The DSM-V will reflect this new understanding of schizophrenia, eliminating the classic “sub-types” like “paranoid schizophrenia” in favor of a spectrum.

 

When the family moved to Newtown in 1999 and Adam was enrolled in a special ed class at Sandy Hook Elementary, Nancy sent an email to a friend back in New Hampshire, “I can’t write much tonight…I have to work on party invitations.

Ryan’s and Adam’s birthdays are coming up. It makes a very busy month! Ryan is having an “Old Friend” party and a “New Friend” party…Adam is having only a “New Friend” party…but he has 26 new friends!!! “

 

Of course those “26 new friends” were his new classmates at Sandy Hook Elementary.

 

I remember the “old friends” drifting away as Jani’s behavior got more unpredictable. There are still some “old friends” that get invited to Jani’s birthday parties but they are really our “old friends.” Since this academic year is Jani’s first back in a class since she became acutely psychotic in 1st grade (she’s in 5th now), for her 10th birthday we invited her entire class. All seven of them. The “new friends.”

 

But Adam continued to struggle, not with violence. Actually, there is no evidence he displayed ANY violent behavior prior to December 14th, 2012, the day he killed his mother and 26 people at Sandy Hook Elementary. The struggles seem to be with his lack of socialization and dealing with a large class (26 is huge for a special needs class).

 

Nancy considered pulling him out and placing him in a parochial school for the smaller class sizes. Instead, he remained in the Newtown District, but being given work to do at home and only coming to school to work with a teacher after the other children had gone.

 

God, that is familiar. That’s what we did with Jani for four years. Just her, a teacher, and an aide, one to two hours a day, in a classroom after the other kids had gone.

 

It is unclear how long that lasted but Adam was at Sandy Hook in the fifth grade to sign a class t-shirt.

 

Then came junior high.

 

I don’t mind telling you that junior high scares the shit out of me. First, it is a different school district where we live (numerous independent elementary districts and then one massive high school district). Jani’s current school district has for years bent over backwards to create a unique program for Jani. We have already been warned that the high school district will probably “not be able to offer the same level of individual care.” Right now, Jani is a big fish in a small pond, in a class of seven, in a school of 400, in a district of 7,000. In one more year, she will be a small fish in a giant ocean of 21,000 students. I already know that it will be like starting all over again. We will have to fight (again) with a new district to get Jani what she needs.

 

Everything that Jani has known for the last six years will end and she will start over new. And starting over new is traumatic for kids like Jani. It can send them sliding back.

 

It did for Adam. Nancy pulled him and put him into a parochial school but that didn’t work out so it was back to Newtown High School.

 

Nancy would get called to the school several times a week.

 

Yep. Been there, done that. I still feel my blood vessels constricting every time my cell phone rings and I see it is the school district’s main line. Like Susan and I with Jani and Bodhi, Nancy would sometimes go a month or more without a call. And sometimes it was several times a week.

 

We get called for violence or self-harm. Nancy was called because Adam would “shut down,” as it has been described by the former advisor to Newtown High’s technology club. He never completely came out of his shell but he seemed to make some progress, even if it was in fits and starts.

 

Then Nancy pulled him in his sophomore year.

 

We don’t know why. I know that anytime Susan and I have felt that Jani was getting too “overwhelmed,” we’ve pulled her or immediately called another IEP to change her educational environment. We know that stress makes her psychosis worse and every time Jani is doing well and the school starts to (innocently) push her to do more, she regresses. And even though logically I know they are trying to improve her functioning in the world, which requires slow exposure to stress to get used to it and learn how to work through it, our response to take away even the most minor stressors out of fear Jani will fall all the way back to the psychiatric hospital.

 

That combination of fear of regression and not wanting to see your child suffer is powerful. Was it the right thing to do? The former head of the technology club says no, because Adam lost the supports he had at Newtown High. It might have sped up what appeared to be almost total social isolation except for Nancy.

 

But then it becomes a matter of how much suffering are you willing to put your child through? Do you trust the “professionals?”

 

The New Hampshire friend told the Courant reporters, “There’s a lot of counseling help available and not all of it’s good… She was very particular about who she would bring him to….She often didn’t trust … the intentions of some counselors, maybe [thought] they didn’t really … know what they were doing, or they didn’t understand the situation enough to help.”

 

How many times did I write in January First or in my blogs about some professional seeing Jani who I felt didn’t understand psychosis, didn’t understand how to work with Jani, or they just “don’t get it?” I think this comes from the fact that as a parent you live with your child. You see everything. And them some outsider, even one with letters after their name, starts telling you how to parent? But they aren’t there. They don’t live it like you do. And so it becomes very easy to dismiss what they are saying, particularly if they seem fixed on a particular idea that you (the parent) should be doing or you don’t feel they are listening to you. This creates something that all parents of special needs kids deal with, especially those whose “special need” is completely understood: the “bunker mentality.” Everyone not with you, not living the life you live, is a potential enemy for the simple fact that they “don’t get it.” Even while you accept their help, you see them as obstructions, people to be tolerated so you can get some help.

 

It is, I admit, very dehumanizing. You divide the world into those who “understand” (meaning they live it) and those who don’t. You start making up excuses as to why a person can’t possibly understand. Eventually, you even draw distinctions between yourself and other parents of mentally ill kids. Anyone who is different, anyone who would not make the same decisions you would just doesn’t “get it.”

 

Unlike me, Nancy continued to socially interact on her own as Adam grew to maturity. She seems to have really fought against the “bunker mentality” in her own life but not with Adam.

 

We will never know if Nancy’s decision to turn her back on whatever services Newtown High offered was a mistake. Maybe from the perspective of the technology club advisor, they looked like great services but from Nancy’s perspective they didn’t. Maybe Adam regressed again and she blamed the environment of Newtown High. When the technology club advisor, feeling that Adam could be a target of bullying, called Nancy to find out how she gets him to interact, she told him he had been diagnosed with Asperger’s. She also told him that she felt his attempts to reach Adam wouldn’t work.

 

I know that feeling. I know the pessimism. You start to believe. Then you child regresses and you are bitterly disappointed. You can’t be disappointed in your child because you know he or she cannot help it. So your disappointment transfers to those who were trying to help.

 

And then people leave.

 

I can only imagine what she must have felt seeing Adam improve with the efforts of the technology club adviser only to discover he was retiring. I have felt that emotion when a doctor or therapist that Jani loved moves on. In fact, in the fall of 2010 I wrote several bitter blogs directed at a local agency for what I felt was them abandoning Jani (in their case, they were, because they suddenly didn’t feel she was getting any better even though we saw improvement).

 

It shatters what little trust you have left that anyone other than you is going to stand by your child until the end. You lose your faith in humanity. You stand by your child no matter what and you, perhaps unreasonably, expect everyone else to do the same.

 

And so all the groundwork had been laid for Adam to continue to withdraw. Nancy appears to have tried to live two lives, pretending to be happy and upbeat in public while worrying deeply about what would become of Adam.

 

The guns. Why in God’s name would she take him to a gun range?

 

I’ll answer that with another question that I have often read: Why in God’s name did you decide to have a second child when you knew Jani had schizophrenia?

 

Well, first, we didn’t know she had schizophrenia. We knew she had issues, but we assumed she would grow out of them. She wasn’t yet violent. But the main reason was Jani was depressed and withdrawing. She was losing her enjoyment of activities she once loved. It seemed like she felt the world had nothing left to offer her. At five years old.

 

I was desperate to give her a connection to this world. I wanted to see her smile again. I wanted to see the light in her eyes again. Nothing I tried worked. So I agreed to have another child (which Susan had wanted for awhile). In my internal fantasies, I thought a baby sibling would wake up her zest for life. I thought that what she needed was someone to teach as I had taught her everything I knew. I thought she would find joy from guiding her sibling as I had guided her.

 

Yes, I was wrong. But I can completely understand Nancy. She was desperate to bring Adam out of his shell. She was desperate to give him some joy in life. She was desperate to connect with him. And shooting could possibly do that, you can’t tell me you wouldn’t have done the same thing.

 

In the end, it might have been a mistake, but her heart was in the right place. Everything she did, she did for Adam.

 

As it turned out, Adam apparently lost interest in the gun range. ATF reports no record of them going to the range in the six months prior to the massacre.

 

Reports have been tossed around that she was looking into institutionalizing him.

 

Those reports are wrong (as is much of my first blog on the Sandy Hook shooting, “The Cycle Repeated”).

 

There is no evidence she was frightened of Adam. There is no evidence she was seeking to get him inpatient.

 

Perhaps where this confusion comes from is that she was preparing to move.

 

With Adam.

 

Where-ever he was going to go. She was still hoping he would finish college and was looking a different schools where he could study history.

 

It appears she had settled on Washington State. She sold her season passes to the Boston Red Sox (not a minor thing for a life-long Red Sox fan).

 

 

To friends and family, Nancy was again looking for the right educational fit for her now adult son — even if it meant leaving New England, where she had lived her entire life.

 

One family member believes Nancy would not have planned such a move without

Adam behind it.

 

When the family member asked Nancy why, she responded, “You never turn your back on your children,” the family member recounted.

 

She told Tambascio that she planned to continue living with Adam “for a very long time.”

 

“You never turn your back on your children….”

 

Sounds like a hell of a mother to me.

 

And she never did. She was sleeping in the early morning of the 14th when Adam Lanza went down to the guns, bypassing the weapons he would use a few hours later at Sandy Hook Elementary, choosing instead a .22 caliber rifle. She was sleeping as he shot her four times in the head at close range.

 

This was totally at odds with the carnage he would unleash on Sandy Hook Elementary. Four quick head shots. I confess I want to believe that he didn’t want her to suffer. That is my explanation for the four quick “taps” to the head. I have no proof of this but I just can’t bring myself to believe that he wanted her to feel pain. In her emails, she alludes to a life threatening auto-immune illness she had. Perhaps this was as close to an act of love as Adam Lanza could feel. Quick and painless.

 

From then on, we know nothing. Nothing about his motivation. Do I still believe Adam Lanza was psychotic? On that day, yes. I believe a switch flipped in him. Something in his thought process went terribly, terribly wrong because there is no logical reason for what he did, nor is there anything that we know in his history to indicate that he would.

 

And I suppose that is where I come to after four blogs on this topic. In the beginning, I was absolutely convinced that Sandy Hook was a clear case of the “system” failing to identify the warning signs of a psychotic break.

 

Except there weren’t any warning signs. There was no denial on the part of Nancy Lanza. There was no failure on the part of the system. Adam didn’t fall through the cracks.

 

Or if he did, we don’t know how we could have prevented it.

 

At the end, all we have is that something when horribly wrong with Adam Lanza’s thought process. And any hope of being able to understand it, and therefore prevent it from happening again, was destroyed when Adam put a bullet through his brain, ending all thought processes.

 

Adam Lanza’s father and brother? They’re not talking. I wish they would. There is nobody left to blame here, people. We just need to try and understand.

 

Was Adam Lanza under the care of a doctor or psychiatrist? We don’t know. Were Lanza’s “incidents” at school more severe than the technology club teacher knew or let on? We don’t know. Reporters only know what people tell them. Sandy Hook Elementary, which would still have Adam’s records, Newtown High, and any doctors he saw, even a pediatrician, aren’t talking. It’s not a HIPAA issue. HIPAA protection ends with your death. But whatever else there might be in Adam Lanza’s history, we will never know unless those who knew him come forward.

 

I hope they do.

 

Based on what I know, I cannot see where Nancy or the world failed Adam. And that terrifies me. Because Nancy tried everything and was willing to keep trying.

 

Only she never got the chance.

 

If she can fail, any of us can fail. If Adam can become a killer, any of our children can become a killer.

 

So what is the answer?

 

The only thing I know for sure is that Adam was isolated. Self-imposed isolation, but that is what mental illness does.

 

Jani still interacts with the world, even if the things she says are a bit “off.” And that, I think, I hope, will make all the difference.

 

I don’t know that we will ever be able to stop every massacre like Newtown (unless we ban semi-automatic weapons like they have in the UK). After all, Eric Harris and Dylan Klebold went to prom three days before Columbine.

 

But if we focus on socialization over isolation, we might save some lives.

 

And if nothing else, at least we might need more than 30 minutes to tell the story of a life.

 

Link to “Nancy Lanza: In Her Own Words” http://www.pbs.org/wgbh/pages/frontline/social-issues/raising-adam-lanza/nancy-lanza-in-her-own-words/

 

[video:

100×100]

I Am an Asshole (Cool and Cold)

I am an asshole.

 

This is a fairly common assessment of me by readers of January First over on the book’s thread on Goodreads.com. They like the book. They are unable to stop reading it. They keep going to the end, sometimes in the hope that I will acknowledge I’m an asshole and seek some kind of redemption, although I am not sure what sort of redemption I am supposed to seek. It doesn’t really matter, though. I am not looking for redemption. I didn’t write the book to be liked.

 

No, it’s not that the fact that some readers of either the book, this blog, or our Facebook page think I’m an asshole that surprises me.

 

It’s that they thought I wouldn’t be. That is what surprises me the most. That they can read everything that happened in January First and expect me to come out of that “nice.”

 

Am I missing something here?

 

Now, full disclosure: I probably had moments of “assholeness” before. The time before Jani and her illness is a distant memory but I certainly wasn’t perfect. I think without Jani I probably never would have gotten on medication myself. To the people who speculate that I am mentally ill myself…well, duh! No, I was a perfectly rounded human being before Jani. No, I have always had a more minor mental illness, which when diagnosed goes by the term chronic depression or bipolar 2 (no manic state) but it is better known by it’s common term That guy is an asshole. In females, it is known as That woman is a crazy bitch!

 

I am honestly not criticizing my readers here.  I don’t shy away from my reputation as an asshole. I am just genuinely wondering what they were expecting?

 

Since I didn’t have the chance for much self-reflection in the book (there is such a thing as contractual length), I am doing it now.

 

Well, right off the bat I can tell you part of the problem is that it is not over. Books have to end. Life does not. It’s hard to reflect on something when you are still in it. Reflection is a luxury that comes with being safe and sound. First you have to feel safe and sound. I don’t.

 

Yes, I probably could have waited to write the book until I had to narrate it from my death bed. Or, as some have suggested, at least wait until Jani was grown and could give her “blessing.”

 

I didn’t because that might have changed the ending… the most important aspect of the book and the one that is so easily lost.

 

The book ended with Jani alive.

 

She is still alive.

 

By writing it, I did not guarantee that she would stay that way but I took a meaningful step. I entered her into the canon of public consciousness. From now on, no matter what happens, she is part of the Library of Congress, the collective consciousness of the United States of America. I have increased the odds that when asshole me is dead and gone, there will be people who will remember her and help her.

 

Because Jani still clings to functioning by her fingertips. Those who expect Jani to one day be angry at me for “outing” her to the world may turn out to be right. But first Jani needs to learn to take a shower by herself.

 

You know, the little necessities of life that have to be taken care of before someone can sit and brood over their parents’ actions.

 

It seems like a little thing. Taking a shower. Most of you probably do it every morning without thinking about it. Why? Oh, sure, you’re afraid of somebody sniffing the air while you’re in an elevator and looking in your direction. Of course, that requires social awareness, being aware of the presence of other people around you and that you have to live and work side by side with them. Thank God for deodorant, Dentyne, breath mints, and Binaca. Stores are filled with ways to conceal the normal functioning of our body throughout the day.

 

If you are not socially aware of what other people think of you, how would you know that you needed to clean yourself?

 

But that’s not the only reason you take a shower. Think about the days when you don’t have to go out of your home. Let me ask you this. How long can you go without a shower, even when you don’t have to go out in public?

 

One day. Two days?

 

There is a limit, isn’t there? You know when it is. When you get up from lying down and your skin peels off the bedsheets like Velcro. When it feels like there is a layer of film on your skin. When you start to twitch from hating the feel of your own skin. When you can smell yourself.

 

How long can you go without brushing your teeth? Our dentist said that when he was in dental school, the students had to go one entire month without brushing their teeth, for the purpose of taking a sample of plaque off the teeth for culture. Can you imagine that? An entire month without brushing your teeth? How long does it take before your mouth feels like its lined with cotton?

 

In the end, it ain’t just social decorum that makes you take a shower or brush your teeth or wipe yourself after going to the bathroom. In the end, you can’t stand the way you feel if you don’t. You have to shower. You are compelled. The power of Irish Spring compels you.

 

But what if you don’t have that compulsion? What if you are disconnected from how your body feels so you never get that “skuzzy” feeling? Or “skeevy” as I think the kids say now, as in “Michael Schofield gives me this skeevy feeling like he is exploiting his daughter….” by wish I assume you are saying I give you a feeling like you need to take a shower. Good for you. Your brain is functioning relatively normally.

 

You know what happens if we tell Jani to take a shower?

 

She’ll turn on the water. And just stand there, looking blankly up at the shower head.

 

If I say “Wash your hair,” she will get the shampoo bottle, open it, pour some into her hand, and then slap in on her scalp.

 

So?

 

She’s hasn’t gotten her hair wet yet.

 

Okay, start again.

 

“Jani, wet your hair.” This is followed by innumerable commands of “keep going” because initially she just turns around and moves back into the water stream enough to wet the tips at the end. If she were Bodhi with his short, straight hair, this would be sufficient, but you know Jani’s hair. Everybody loves Jani’s hair.

 

Next, it is “Get the shampoo.” She does, like I described before, and slaps it on her scalp.

 

“Massage it in,” I have to tell her, followed by more “keep going, keep going, keep going….”

 

“Now the conditioner…..Eighty got a cat?….Mix it into your hair….. Eighty’s cat’s name is Seventy-Five?….. Keep going, keep going, keep going….We have to take care of Seventy-Five?…. Keep going…Where is Eighty going?…..Eighty has to go to Bakersfield, I see….Keep going… Yes, I know, we have to take care of Seventy-Five…

 

I will take a thick brush and gently attempt to brush out the tangles. While I do this I talk a blue streak about whatever she thinks her hallucinations are doing because if she screams, if she thinks I am “doing it too hard!” she will take the brush from me and rip it through her curls, pulling out huge clumps of hair without a whimper, which frankly scares the shit out of me.

 

I get a washcloth and wet it, because she will not remember to wet it before I say “Wash your face.” “Washing her face” for her means washing her chin. I suppose I could say “Wash your mouth. Wash your cheeks. Wash your nose. Wash your forehead,” but time is a moving here and we still have a long way to go so I end up taking the washcloth and doing a quick onceover her face.

 

Next, I rub soap into the wash cloth and say “Take the wash cloth.” I won’t wash her body. I haven’t in years. First, it was because after the DCFS investigation for sexual abuse, I didn’t want to take the change. Now it’s because she is ten and a half years old and I shouldn’t even be in the fucking bathroom any more.

 

I have to repeat my command to take the wash cloth several times, either because she is talking about her hallucinations or because she is busy putting her hand up her bottom to make sure she isn’t having a bowel movement.

 

Finally, she takes it.

 

“Wash Amy the arm.” “Amy” is her left arm. The only way I could get her to wash herself was to name her body parts. All of them. “Now wash Annie the arm.”

 

“Now, Sally the shoulder… and Sharon the shoulder.”

 

“Ursula the underarm.” Now that she is on the verge of puberty I make her wash her underarms. It took me forever to think of another female name starting with “U.” “Now, Uma the underarm.”

 

“Now, Chelsea the chest….Becky the belly. Now, Lisa the leg. No, get all of Lisa. You have to do the inner thigh.” She pauses because she can’t remember what the inner thigh is. I try to point to it without touching it but she thinks I am pointing to the outer thigh of “Leslie the leg.” “No, inner thigh. Inner thigh. The inner thigh.” I don’t know how many times I say this. She is just draping the wash cloth over her legs but I figure the soap runs down so the calves will get clean anyway.

 

“Don’t forget about Gina and Tina.”

 

“Gina.” Short for “vagina.” And “Tina the tush.” She spends more time with the washcloth up her butt that anything else.

 

“Okay, now rinse off.” She drops the washcloth. I have to tell her to turn around several times until all the soap is off.

 

“Okay, you can turn off the shower.”

 

She does. Then she screams “I’M WET!!!” at the top of her lungs, as if she just realized. I hand her a towel. She spends several minutes with the towel up her bottom and then attempts to get dressed with the rest of her body still soaking wet.

 

“Remember how I taught you to dry your legs?” I ask. “Wrap the towel around each leg individually and then move down.”

 

Sometimes she does. Sometimes she continues to scream that she’s wet while drying her bottom to the humidity of the Sahara.

 

Sound creepy? Are you creeped out? Does that make you feel “skeevy?” Good. It’s supposed to.

 

By the way, it’s the same process for Susan and Jani’s ABA behaviorist, who comes on certain mornings exactly for this purpose.

 

So am I worried about what Jani is going to think and feel when she is twenty years old?

 

No, I am worried about Jani being able to THINK and FEEL at twenty years old.

 

I am worried about her being able to take care of her basic hygiene.

 

The loss of hygienic awareness is what is called a “negative symptom” of schizophrenia. The hallucinations and the aggression? Those are called “positive symptoms” and they are easier to treat, provided the person suffering from schizophrenia takes his/her medication. “Negative symptoms” are the things that most of have or take for granted but those with schizophrenia do not.

 

And both positive and negative symptoms can kill.

 

Because the negative symptom of lack of awareness of hygiene is the first step to homelessness (or the appearance of it, like the guy in New York City the nice cop bought a pair of sneakers for). And homelessness ends in one of two places: prison or death.

 

Our only hope is to try and lock the process of bathing, body part by body part, into Jani’s mind so it becomes a repeating loop for her.

 

I find the saying “Cleanliness is next to Godliness” depressing. It feels like it is putting the severely mentally ill further and further away from God’s Grace.

 

I have to worry about Jani being able to do the basic requirements of human survival. And you wonder why I’m asshole?

 

While you sit in judgment of how the future will look back on me, I am still trying to ensure Jani is a part of that future. Because in the end I am a mammalian parent. And I do what all mammalian parents do when they feel cornered: lash out. Lash out whether you deserve it or not. It gets to the point where you don’t trust anyone anymore. The parents of the severely mentally ill will die for our children. And we see nothing out there, in your society, that makes us feel anybody else will.

 

You imprison our children. You hit them with stun guns. You pass them on the street. You beat them to death.

 

Why in God’s name would we trust you?

 

Some of us are just better at hiding it than others. Because we know we need you. And we all know our anger turns you off. You are fine with our pain. You sympathize with that. But our anger? No, that makes you turn away.

 

But so many of you turn away anyway. You see a cute girl on TV. You “like” a Facebook page. Then you move on.

 

For most of you, the seed I, and the other parents like me, have tried to plant in your mind will not germinate.

 

But for a select few of you. It will. It will and it will grow despite the aspects of us that you don’t like.

 

I am sorry that I don’t trust you. It will take me a lifetime to trust society again. Not because you are bad people. Not even because you weren’t there. No book in the world can ever truly give you the experience of what loving a severely mentally ill child is like. No, I can’t trust you exactly because of that. You cannot feel what I feel. It’s not the life that I hate. There is no pity here. But there is pain.

 

But you can’t function in pain. You have to get angry or you can’t get out of bed in the morning. And if you can’t get out of bed in the morning, severely mentally ill children will die. Today might be the day that everything unravels. All your victories are temporary. All your failures feel permanent.

 

My greatest failure is not that I can’t make you understand. That is only a shadow of my true failure, which is that I can’t fully understand what Jani experiences. But perhaps if I could, I would be no use to her. I try to tell myself that.

 

So that brings us to a catch-22, doesn’t it? In order to insure the survival and happiness of Jani and the countless children like her, I can’t do it alone. I need you. But the very nature of this experience is lonely. I can’t make you feel it. And so I get angry. And that potentially drives you away.

 

I don’t know how to solve this. I cannot be someone I am not. Neither can you.

 

But maybe, just maybe, in the midst of my anger and your confusion, we can remember that there are children here we need to save.

 

And we can save them.

 

We all need to be saved. We all need redemption.

 

And when severe mental illness does not kill anymore, when it does not destroy lives, that will be our redemption.

 

NOTE: This could very well be the last blog published here. Jani’s Journey will be moving to www.janifoundation.org soon. The Jani Foundation was incorporated in the State of California on December 17th, 2012 (Bodhi’s birthday) and 5o1c3 status is pending.

[video:

100×100]