It feels strange.
Not being together again under one roof. That doesn’t feel strange. Quite the opposite. For the first time in two and a half years, I feel like I have a home again. Longer really. There was no peace in our apartment even before the Great Division. There had been no peace since before Bodhi was born.
It has been a long time since I’ve been able to go to sleep without fear. The new apartment is like a sanctuary. I close my eyes at night knowing that Jani is sound asleep in her room, Susan in another. I fall asleep on the living room floor between those rooms, listening to the sound of Bodhi breathing above me in his bed. When I wake up, everybody is still here.
I feel secure. I feel safe in the middle of this two bedroom apartment.
Jani is fine.
Bodhi is fine.
Feeling strange is not the same thing as feeling uncomfortable. I suppose part of this journey has been getting a glimpse at the full range of human emotion. The English language does not have words for all the things we can feel.
So if I am not uncomfortable, why do I feel strange?
I suppose part of it is like coming home from a battle that has waxed and waned over the past four years. About four years ago, shortly before Bodhi was born, I left my life. I was drafted. Every parent of a special needs child gets that draft letter, a metaphorical letter drafting you into a conflict you don’t really understand. Like the real draft, as it existed prior to the termination of the draft in 1973, whether you get drafted is entirely a matter of pure, dumb luck, a macabre lottery. The real draft actually was a lottery. Birthdays of males ages 18 to 26 were assigned a random number, and if that number was chosen, every male with that draft number received the letter. My father missed going to Vietnam because his birthday, July 28th, was assigned a high draft number, while July 27th and July 29th had higher numbers. Just like the real thing, what takes you into the war against mental illness, autism, or severe physical disability is the random falling of a lottery ball.
The war inside Jani started in her infancy, but I suppose I consider my draft day to be December 17th, 2007: the day Bodhi was born. Or maybe it was March 9th, 2008, the day Jani first went inpatient at Alhambra, something I opposed. Truthfully, it was probably December 2nd, 2001, the day Susan and I found out she was pregnant with Jani.
No, I think my real draft day was not a day at all but several weeks, months, while I struggled to keep Bodhi safe from Jani. I think my real draft day was when I looked into my daughter’s eyes and knew something else was inside her.
When you get drafted, you only have two choices: either run to a metaphorical Canada or say your good-byes to the life you knew and report for duty.
At the time, I didn’t think about it. I didn’t have time. The war was already upon me.
Unfortunately, we have no basic training. We have no Camp Pendleton or Parris Island. There is no drill instructor to teach you how to stay alive and keep those in your charge alive. You have to learn under fire.
You are placed in a situation you have no idea how to solve. Nobody prepared you for this. The fact that the enemy lives inside someone you love, that you never know when it is coming, the constant living in fear that it will take your child from you forever or that you simply aren’t up to the job. There is no medic when you get hurt. There is no evacuation from the field of combat.
Only then do you start to think about quitting. And you can. Even soldiers in combat can quit. Of course, there are penalties for this: the stockade. For those of you who are thinking about leaving, talk to those who have left. Once you are drafted, there is no real escape. If you leave, you simply spend the rest of your life in a stockade of your own guilt, far worse than any sentence that can be handed down.
I am not saying it is nobler to stay and fight. I am only saying that there are penalties for everything.
I did quit and it was very public. Oprah asked me about it on the air. I attempted suicide back in June of 2009, only weeks after we split into two households. I put the proverbial gun in my mouth and pulled the trigger. It just didn’t kill me. But even before I knew I wasn’t going to die, I knew I had to go back.
The reason most soldiers don’t quit in the face of combat has nothing to do with honor or duty or belief in the war. It is because they know that it means abandoning their fellow soldiers. Even without me, Jani, Bodhi, and Susan would remain in the battle. I couldn’t leave them alone to whatever fate might befall them. I had to go back.
So if you’re not going to quit, there is only one option left: survive. Do what it takes to get yourself and those in your charge through the day.
This blog began as my attempt to make some sort of sense of the world I was now in. Letters from the Front, if you like. When Shari Roan, the LA Times health reporter heard about us from a friend and wanted to do a story, I had no time to think. It was just like having a “Stars & Stripes” reporter following us around. My focus was entirely upon Jani, who had been in UCLA for three months by that point. What made the story stand out was our decision to split the kids into two different apartments. That is primarily what drove the media interest. It seemed such an extreme move, something they had never heard of before, a radical way to hold our family together despite Jani’s illness. When I had time to think about it, my sole motivation for doing the Times’ story was the hope that the publicity would help us in our constant fight with Blue Shield to keep Jani inpatient. My only interest was in the pressure the media could bring. When 20/20 and Oprah came calling, I was largely in a daze. It was still a daily fight for survival. My only thought in regards to media appearances was the same as it had been for the Times: the more the world knew what was happening to Jani, the easier it would be to break down the doors of care for Jani. And that meant letting the world know that childhood schizophrenia existed and there were no services. The media was a tool in an effort to get word of the war out to a larger audience. That is why we were selective. We didn’t take every media offer that came along. The focus had to be on the impact of the disease, not on potential cures.
Two things surprised me. The first was that I was surprised by the level of interest. I never expected Jani’s story to have the impact it did. Mental illness, even mental illness in children, had been around for a long time. Jani’s social worker at UCLA, now retired, told us about what it was like in the 1960s. Jani would have been on the “back ward” of Camarillo State Hospital (now CSU Channel Islands). There were kids like her living in state hospitals. What happened to them? Where did they go? Did they get better? Or did they wind up on the streets, self-medicated with narcotics?
The media exposure then took on a different purpose. We had to change the world, to provide services for children like Jani before they reached adulthood, before prison or homelessness. What we wanted the world to see was that our little blonde daughter was the early incarnation of the man you see screaming at thin year on a street corner. Knowing we would not live forever, we were driven by desperation to provide a safe environment for children like Jani before they turned from cute kids to scary teenagers and the world stopped giving a damn and wanted them in prison.
The second thing that surprised me was the sheer number of people who wrote to us, pouring out to us what they were going through and saying “I thought we were alone.” To quote Sting, “We’d never known it, being alone.” Kids like Jani were all over the world. They didn’t have the media protecting them so we made it our mission to try and extend Jani’s media attention to envelope those other children and those other families.
I did that because if the situation was reversed, and your family had a public voice and mine didn’t, I would hope you would do the same thing.
But there was one final thing that surprised me: the attacks. I never saw that coming. I never saw Jani’s care or her diagnosis as controversial. It never occurred to me that there could be a handful of people who would see this in an entirely different way.
Gradually, I learned to tune those handful out. What was most frustrating to me was that in reality, we wanted the same thing: dignity and the right to happiness for the mentally ill.
Generally, they are pretty harmless. The internet gives everybody a voice. Unfortunately, it also gives people a sense of power, a sense that they know what they really don’t.
Right in the middle of moving day, we got a visit from the Department of Child and Family Services (LA County’s version of CPS). It was our fourth visit overall, so I didn’t panic. I continued screwing the TV to the wall while one field agent talked to Susan and the other talked and played with Jani and Bodhi. They know our story and they know, as they tell us every time, that families with a child with mental illness are statistically several times more likely to get called on by CPS. It comes with the territory. I don’t know of a single family with a mentally ill child who hasn’t gotten a visit from CPS.
This particular visit was for two purposes. First, they had been planning to come out anyway. DCFS knew Jani during the worst of her psychosis. They classified her as a danger to Bodhi, which at one time she was. Had we not split into two apartments two and half years ago, losing one child or the other was a real possibility. We were warned not to move back together until Bodhi turned five. Until that time, as far as they were concerned, Jani remained a potential danger to him.
We moved back together with Bodhi still two months shy of turning four. Jani had been fine with him for awhile. We could even bring him over to her apartment. The financial inability to maintain two apartments without donations just forced us to do what we were probably ready to do some time ago.
Knowing that we were moving, they had to come to check on how Jani did with Bodhi. They were going to do that anyway. Something just sped up the process.
Somebody filed a claim of abuse. Specifically, the claim had been made that we were overdosing Bodhi on Benadryl to make him sleep.
Anybody who works with children is what is called a “mandated reporter.” This means that under penalty of law they must report any suspicion, no matter how slight, to CPS for investigation. Doctors are mandated reporters. Teachers are mandated reporters. Dentists are mandated reporters. Therapists are mandated reporters.
When a claim is made against you, CPS cannot legally divulge the identity of the claimant, but they can say whether the claim was made by a mandated reporter.
It was not.
When claims are not filed by mandated reporters, they are usually filed by a concerned citizen who actually knows the family and children in question. They see something that concerns them and they call it in. Fair enough.
Since our story became public over two years ago, DCFS has received two claims about us…. from people who have never met any of us. There only knowledge of us comes from what they have seen on TV and/or what they have read on my blog.
Nonetheless, DCFS is obligated under law to investigate any claim, regardless of whether the claimant actually has met the family or children.
In this case, as soon as we heard the claim, we knew exactly who it was. We know because the language of the claim came directly from a conversation with one of our regular critics on Facebook, a woman by the name of Jen B (I will refrain from using her full name because then I would be no better than her). Jen B is the same person who uses the handle “WarriorMom” on the Amazon discussion page about my book, who has posted somewhere in the vicinity of 400 posts accusing me of abusing Jani, doing everything from taking my blog posts out of context to outright lies. We know it was her because she private messaged Susan on Facebook after Susan mentioned giving Bodhi Benadryl to help him sleep, accusing her of abuse. She also used a blog post of mine from somewhere back in June of this year where I refer to giving Jani adult doses of Benadryl (25mg) to ease her suffering from tactile hallucinations. What Miss Jen neglected to mention in her report to DCFS is that both were under doctor’s orders. Jani was prescribed adult Benadryl to counteract the effects of possible EPS (extra pyramidal symptoms) from the thorazine, a drug which carries a risk of dystonic symptoms and tardive dyskensia. For security reasons, I no longer blog about Jani going to UCLA until after she is out. Hence, no one outside of our close friends knew that she had gone back in late June because she was shoving her hand down her pants all the time, convinced she was having loose stool. Tactile hallucination or not, it was crippling her, so she went back to get everything checked out. A full panel of metabolic and endocrine tests were done. She was fine, but the doctors decided it was time to end the Benadryl, as Benadryl is an anticholinergic agent and clozapine, which Jani is also on, is also an anticholinergic (anticholinergics block the uptake of the neurotransmitter acytocholine). Jani’s acytocholine level was a little low so the decision was made to stop the Benadryl. She hasn’t had it since then.
Bodhi’s dose, prescribed under the order of a psychiatrist, was never that high. It was the children’s dose (12.5mg) and was ordered to help reduce anxiety (the only other option being Risperdal and nobody wants to do that with a child that young).
Jen WarriorMom did not know about Jani coming off Benadryl because I hadn’t blogged about it. She did, however, know, because Susan told her, that Bodhi’s dosing was prescribed by a doctor, which, since she failed to tell DCFS this in her report, technically makes it a false report (as she withheld information).
DCFS is doing their due diligence, talking to Bodhi’s doctor, teachers, and even his dentist, as they are supposed to. But most of our conversation with dealt with how to deal with Jen WarriorMom.
Jen WarriorMom is not a doctor. She is a massage therapist. From what I hear, she does a pretty good Swedish massage. That in and of itself does not preclude her from making a claim. What does is the fact that she lives 1500 miles away from us and has NEVER EVER met me, Susan, Jani, or Bodhi. She says she doesn’t have to meet us. She is certain Jani is being abused.
DCFS is concerned because Jen WarriorMom is not your average critic. She is a full on internet stalker. She invaded my private Facebook page under a false identity (causing me to shut it down). But what really scares the shit out me is this woman is hell bent on destroying my family. That’s not hyperbole. She wants Jani and Bodhi removed from our care and placed in foster care. She even has a website set up to this effect, arranging a network to “follow” Jani and Bodhi once they are removed from our care (apparently forgetting that privacy laws would prevent her from doing so). This woman is so convinced that I am evil that she wants my kids taken away from me.
This woman hates me more than my ex-girlfriends.
A pretty irrational hate at that, considering that she has never met any of us. She seems not to care what happens to Jani, along as she is away from me.
So DCFS’s recommendation was to stop speaking publicly about what is going on with Jani and Bodhi RIGHT NOW. What happened in the past doesn’t matter because that has already been investigated and cleared. But everything we say in the present can and will be used against us. DCFS knows this is a unfounded claim (although, like I said, they are doing their job and we are cooperating) their concern is that if they get called out enough, eventually a judge is going to wonder why.
That scared the shit of me, I’ll admit. It scared me that a woman who has never met us, who clearly has severe mental health issues of her own, and who lives 1500 miles away could reach out and destroy our family just by picking up the phone.
And she can render us silent, at least about Bodhi and Jani’s current progress.
This kills me because I know there are those of you out there who depend on hearing how Jani is doing, because it gives you strength. It kills me that one obsessed stalker who would never have known we existed if not for the LA Times article can scare me into silence, breaking what bonds my readers.
I haven’t decided yet what I am going to do about it. I am not going to stop speaking though, or blogging. My struggle is with deciding if I want to take the risk of talking about what is going on with Jani and Bodhi, knowing this woman is out there. I am torn between my desire to provide you a light in the darkness and the need to protect my family and especially my children from the foster care system.
Like I said, Jen WarriorMom (a misnomer if there ever was one) would never know about us if we hadn’t gone public. But if we had never gone public, hundreds of other families would still believe they were alone. Their children would still be getting substandard care and substandard education. They would still be isolated.
No, I don’t regret that and I never will.
So you know what, Jen “WarriorMom?”