Month: June 2011

All Good Things…

This is going to be short.

 

I don’t have much to say.

 

Jani is still struggling with the tactile hallucinations that she is having loose stool (diarrhea). She wants me to check her pants all the time. It is all I can do to keep her from pulling down her pants in public. She always wants me to touch her rear end to check. I tell her she doesn’t but she won’t accept that. Even when I touch her backside and say, “Nope, all dry,” she still doesn’t quite believe it. I see her reach back to check. She really can’t tell. Today, on the way to her equine therapy, she was afraid she would poop on the horse. I told her that the horse was far more likely to poop on her. I got a smile from her on that one.

 

It has given me a sense of how intense tactile hallucinations are. Her visual hallucinations are mostly harmless. We don’t deal with demons and “shadow men” and other horrors that I have heard from other schizophrenics. There is nothing worse that seeing a child scream in terror at something you can’t see. There is no experience that makes one feel so powerless than to be unable to comfort a child in fear. And you know what feeling powerless does? It makes you afraid. And fear leads to anger. You get short with your child, annoyed. Because you can’t fix it. That is your job as a parent. To protect your child. And you can’t do it.

 

And some of you wonder why I can get mean.

 

It gets hard to hold on to your humanity. As parent you are supposed to be strong. Unfortunately, the mind of a mentally ill child is stronger. It can create thoughts, feelings, and visions you can do nothing about.

 

There have been times when I dosed Jani with Benadryl to knock her out. Because at least she is out of her misery for awhile.

 

For some kids that doesn’t work. I have known many mentally ill children whose bodies fight off the Benadryl. By the way, we are not talking children’s Benadryl. We are talking the adult dose. 25 mg per pill.

 

Hospitals use Benadryl as a standard PRN because unlike anti-psychotics, it is essentially harmless. Actually, thorazine was accidentally discovered by a French lab looking for a new anti-histamine. It is better to drug into sedation then let someone suffer. I am sure a few of you are gasping at that and adding it to your list of “Reasons Michael Schofield is Evil” but I stand by it. Watch a child suffer scratch themselves until they bleed because they feel “itchy.” Watch a child pull out his teeth because “it makes my mouth feel better.” Watch a child cut himself with a knife and write on the walls in his own blood. And then ask yourself how long you could take that before you will do whatever it takes to put them to sleep, to give him a moment of peace.

 

That is why those of you who don’t believe in child mental illness or in mental illness at all sicken me. Because what I described fucking happens every day. Come over to the Jani Foundation page at www.facebook.com/janifoundation and listen to the stories. Actually, don’t. Because I don’t want you bothering the desperate parents over there. You will never believe it until you see it. Oh, I know. Somebody once “labeled” you something you disagreed with. You got hospitalized against your will.  You got pills shoved down your throat. They made you feel like a zombie. And now you have an axe to grind with the world that did that to you.

 

Okay, I can understand that. You’re pissed off and now you think all psychiatry is quackery and lies. Can I give you some advice? Let it go. You know why? Because you are okay. You aren’t hurting herself. You aren’t cutting yourself or pulling out your own teeth. So you were a little “weird,” a little “eccentric,” so you think, and somebody put you in the loony bin for it. Consider yourself lucky that you are functional enough to post hateful comments to me. Consider yourself lucky that you have the luxury of believing the cure is worse than the disease.

 

Go on with your life now. Enjoy it.

 

And leave us to deal with the children for whom the disease will always be worse than the “cure.” We are parents. We don’t want our children to suffer. And we will do anything we have to do to prevent that from happening.

 

Bodhi is still a work in progress, a developing human. We still don’t know what is waiting inside his mind. Tonight I tried to build a train set with him. I would almost get it finished and then he would suddenly pick it up and throw it, a big smile on his face, like it was all a game.

 

He’s three. Maybe it’s nothing. Maybe not. No way to know right now. Verbally he is improving but he still lags far behind where Jani was at this age. But Jani was speaking in grammatically correct sentences at 18 months. I could have full conversations with her before she was two. So I don’t really know what “normal” is.

 

Damn. This was supposed to be quick. I need to get back to work on the third draft of my book because the faster I write, the closer I get (hopefully) to the next part of my advance. And then I won’t have to do what I am going to do now.

 

You knew it was coming.

 

I hate the end of every month because I know I can’t make rent, let alone any of the other bills. And then I hate the beginning of the month, watching the First become the Second become the Third become the Fourth, always checking the Paypal account, desperately hoping there will be enough there to make the rent, to keep the roofs over both children’s heads.

 

So, yes, I am asking for money again.

 

You don’t like it? That’s fine. You don’t need to say anything. You’ve said your piece. I heard you. Your comments are up there after all the other blogs I’ve written asking for money. My personal favorite is “I came here wanting to learn about life with mental illness.” That’s funny to me because what do you think this is? You think that chronic mental illness and never having enough money aren’t related? This IS life with mental illness, or an aspect of it. I’ve explained why time and time again but I guess I will do it again. BECAUSE NO ONE ELSE CAN TAKE CARE OF OUR CHILDREN AND KEEP THEM SAFE. THEY NEED 24 HOUR A DAY CARE. THAT MAKES IT HARD TO WORK. Because I am a college instructor, I am luckier than most in the sense that I can still work a little bit. But I can never be gone too long. Because all I ever think about is how Susan and Jani and Bodhi are doing while I’m gone.

 

Parents of children with chronic physical illnesses often can’t work either, for the same reason. Yet nobody begrudges them. It’s part of the double standard in our society that mental illness is still not treated as a “real” illness.

 

So this is life with a mentally ill child. It’s also life being a mentally ill adult, most of whom also need financial help to stay alive. This IS our life, people. If you aren’t comfortable with the constant financial need, then I suggest you fight for respite care, for individuals trained in psychosis who we would feel safe enough leaving our children with to go to work.

 

Your other option is to pack up the van and get out of town. ‘Cuz this is Schizophrenia Town. So many of you are fascinated until I stick my hand out. And then you get all flustered. I am the guy standing on the corner of the freeway off-ramp with a sign. You know that guy. You look away, pretend not to see him. You would never say the things to him that you say to me. But thanks to the anonymity of the net you don’t have to deal with the consequences of hurting someone.

 

Or having them come through your driver’s side window to get you J

 

You make your comments from a distance, safe in your own little world, far away from mine and every other family and mentally ill person on the Jani Foundation Facebook page.

 

Contrary to popular belief, I never “expect” people to donate. Every time I write one of these blogs, asking for money, I never know if this will be “it:” The time I don’t get enough donations to pay the rent. It hasn’t come yet, because of the generosity of many, but I know it could come at any time. This, however, could be the time. This might be the time when I have tapped out my generous readers for the last time. This might be the time when all my readers are so broke themselves (most are) that they are on the edge of the cliff themselves.

 

I never know. Every time I ask for money from you, it is indeed a total shot in the dark. I never know if this will finally be the month I run out of luck.

This month, I have that feeling very strongly that luck might have finally run out. I don’t know exactly why. You’ve pulled us from the jaws of eviction twice before. But I got a bad feeling this time. Maybe it is because two of our family’s most consistent benefactors, Carl and Dawn, are running low themselves. Maybe it is that everybody I know, and I mean EVERYBODY, is facing the abyss of financial oblivion as well. Or maybe it is just that all good things, even those that are noble and just, must eventually come to an end.

 

In every game, the clock runs out eventually.

 

Thanks to many of you, I have beat it for nearly two years. I have maintained the two apartments, which Jani needs now more than ever. But I always knew that there was a chance I would lose eventually.

 

Has the time finally come? I don’t know. If you don’t hear from me again for awhile (because the internet got shut off) you’ll have your answer.

 

So I thought this time I would take you through what will happen if this is it.

 

Don’t worry. It’s not going be a threat. No “gloom and doom.” Just reality. That’s what you came here for, right? Although I should warn a lot of my readers this is going to strike pretty close to home, no pun intended.

 

Rent is due on the July 1st. Our apartment complex, like most, offers a three day “grace period,” so the final day to pay rent without penalty (like the late fee) is July 3rd, a Sunday.

 

Thank God for Independence Day. That buys us an extra day because the leasing office will be closed.

 

So I will assume that rent won’t actually be “late” until July 5th, when they return. On this day, they will go over who hasn’t paid rent and write up what is called a “Three Day ‘Pay or Quit’” notice. Basically, it says we have three days to pay rent or vacate the premises. Normally we would only get one for one apartment but I am so deep in the hole it will be for both this time.

 

Maybe we will get lucky and they won’t post the “Three day pay or quit” notice until the 6th, but I doubt it. They are pretty efficient here.

 

But for the benefit of the doubt, let’s say I don’t have the rent by the 9th. Hmm. The 9th is a Saturday so that means they might send us to Riverstone’s legal department on Friday the 8th. The legal department will then begin the process of filing a lawsuit to have us evicted. They probably won’t start this until Monday the 11th so let’s assume we get the “Notice of Civil Filing” on Wednesday the 13th. Maybe we will get lucky and it will take until Friday the 15th. At this point I would normally have enough to pay rent on one apartment, combining my paycheck from CSUN (we are paid on a 12 month schedule) and unemployment, but now we will have to pay an extra 500 or 600 dollars in legal fees to get Riverstone legal to withdraw the lawsuit. Out of my league again.

 

Okay, by the 15th we will definitely have the notice of civil proceedings to be evicted in our hand. On that notice will be a hearing date. The civil courts here are humming along in North LA County so the hearing will be before the end of July, maybe the week of the 25th. I will go to this hearing. I will probably have to take Jani with me. In this hearing, I will explain our situation to the judge and ask for an extension. Hopefully I can get an extension to the beginning of August.

 

Right before Jani’s 9th birthday.

 

Of course, the Court isn’t just going to let us skate by not paying the rent. Eventually we will have to pay it or the Court will award for the plaintiff, in this case Riverstone Management.

 

If I am lucky, I can buy enough time to get into August.

 

During this entire time, I will be doing what I am doing now, doing the only shot I have at financial stability: finish the book and do it well enough that the publisher accepts it for production and pays off the second portion of my advance. That is my only shot. That is what I need to buy time to finish.

 

That is what you are buying if you can and are willing to help by donating to us.

 

So that’s the plan.

 

We’ll see how it works out.

 

Hopefully I will get to talk to you again soon.

 

If I don’t, I want to thank all of you who have kept us going these past two years. You kept my family together. That is a debt I can never repay.

 

Thank you.

 

Thank you.

 

Catch you on the flip side.

This Fire Grows Higher (Try to Fight It)

Latest Blog…”This Fire Grows Higher (Try to Fight It)”

 

I didn’t grow up in a musical household.  My parents had LPs, but they were all relics from the time before I was born. It was like they stopped buying music when I was born. When I was fourteen years old, my parents separated. If you want to call it that. We lived in Tulsa, Oklahoma at the time, the end of a line that had taken us from Sydney, Australia, where I was born, to Amsterdam, Boston, Dallas, Texas, back to Sydney, and then to Tulsa. In 1990, my father took a job in Minneapolis, 500 miles up Interstate 35 from Tulsa. He would drive up Sunday night, work the week, and then drive back to Tulsa on Friday for the weekend.

 

The idea was that as soon as the house in Tulsa was sold we would follow him to Minneapolis.

 

But that never happened.

 

One Friday evening my father arrived back home after the 500 mile drive to find a process server on our doorstep, holding divorce papers. We weren’t home. My mother had taken me, packed us into her Honda Civic, and driven across the state line into Arkansas. Her reason for doing this, as she told me, was that she feared my father would become “violent.”

 

My father had his moments. A few dishes got tossed in our house in the late 80s, but nothing more. There was no domestic violence of that sort, just the slow, smoldering hatred that slowly built over the previous decade.

 

I was not devastated. In fact, I was relieved. I had expected it for years and my only surprise was that it took as long as it did. My father simply refused to give up. It was my mother who pulled the trigger on the divorce proceedings. My dad couldn’t do it. I think she took me and ran to Arkansas because she didn’t want to run the risk that he would try to talk her out of it.

 

And I wanted it to be over. Not because I hated my father. Or my mother. I wanted it over because I wanted peace. They fought through most of my childhood and the most common subject of their fights was me. It was always about me (which perhaps is the root of my inflated sense of self-importance). That was a joke. Or maybe not. Of course, a child will remember all fights his parents had as being about him, but a lot of them were about me. It was always the same: my mother trying to argue that their was something wrong with me that needed fixing, or that I shouldn’t be allowed to do something (like eat sugar) with my father arguing my mother was overreacting, that I was fine, etc.

 

When the divorce proceedings went before a court, I was fourteen. I was old enough to make my own decision about who I wanted to live with.

 

I chose my mother.

 

I am still not quite sure why.

 

My father was the far more permissive parent. I could have had anything I wanted from him, something I very much exploited when he would come down to visit me.

 

But I did love my dad. Still do. I have many happy childhood memories of him. I remember riding around in a seat on the back of his bicycle as he rode through the tulip lined villages outside Amsterdam. I remember sitting on the hood of our 1979 yellow Volvo, parked alongside Schiphol International Airport, my dad holding a radio receiver between us, listening to the KLM pilots talking to the tower. I remember us building a giant model of an orange Braniff (remember Braniff?) 747 named “Fat Albert,” and then later repainting it by hand in the colors of Cathay Pacific. I remember him carving a M-16 out of a 2×4 with a jigsaw in our garage.

 

But I elected to stay with my mother. Who refused to let me eat any sugar, fruit, meat, bread, carbohydrates. Who was so convinced I was “overeating” that she drilled a hole through the handles of our twin fridge and slid a padlock through. Who when she caught me eating dry dog food because I was so hungry, instead of getting angry, confessed that she had done the same thing. Who took me for weekly enemas to “clean me out.”

 

Life was hell with her. I stole food out of neighbors’ garage freezers because I was hungry all the time.

 

Why didn’t I go with my Dad?

 

I still don’t know exactly why. Maybe it was because there would be many times in that last year I lived with my mother, that I would see her staring off into space at nothing in particular. Maybe it was because there were times when she didn’t even seem to know I was there. Maybe it was because even then I felt her withdrawing from “this world,” our world. She was going someplace else. I felt it every day. Maybe some part of me stayed because I believed she needed me. Because I was her last link to this world. As long as I was around, she had some responsibility to take care of me. I kept hanging onto this even as my mother unlocked the fridge, got out a few vegetables, and then retreated to her room, leaving me to cook my own dinner.

 

Once my father was gone, there was not much to do. My mother never asked me to do chores, but I did them anyway. I did all the chores that my father had once done. I learned to operate the ride-on lawn mower. I learned to clean the pool. I raked the leaves in the fall and shoveled the snow in the winter. I replaced him in every capacity except… well, you know. What mommies and daddies do. I was not in school. I had a lot of time on my hands and I spent in my father’s former study. He’d left everything behind. I read all the books he’d accumulated, ever Tom Clancy novel or Dan Brown paperback he had picked up to read on long flights to one business meeting or another. I read The Hunt for Red October cover to cover numerous times.

 

One day I noticed the record collection on the bottom shelf. I knew they were there but had never really paid attention before. I started pulling them out. An original copy of “Meet the Beatles” (too bad I had no idea then what that was worth). “Help.” Only years later did I realize that my father’s collection of Beatle records stopped before the “Sgt. Pepper.” My dad was never a hippie. He was already working full time hanging telephone wires for Telecom Australia by 1967. In 1968 he met my mother. They married in 1969.

 

There was also Willie Nelson, Waylon Jennings, and Merle Haggard. I was listening to “Mommas, Don’t let Your Babies Grow Up to be Cowboys” completely oblivious to Guns n’ Roses and U2.

 

My mother’s collection included The Carpenters and ABBA’s Greatest Hits. “Fernando” was my favorite.

 

A friend of my mother’s gave me my first two tapes: George Harrison’s Cloud Nine and Warren Zevon’s Greatest Hits. I remember listening through my Walkman, blown away by “Excitable Boy,” “Lawyers, Guns, and Money,” and “Roland the Headless Thompson Gunner,” which lead me to ask my mother who Patty Hurst was.

 

The first tape I ever bought was Billy Joel’s “Storm Front.” For my younger readers, there was a time, in the days before digital downloads, when you heard a song you liked on the radio and bought the tape or CD (we didn’t have a CD player) only to discover that one song on the radio, the single, was the only song you liked. For me, that was “We Didn’t Start the Fire” (although “The Downeaster ‘Alexa’” is not a bad song either).

 

“We Didn’t Start the Fire.” In 1990, all I knew was the song was catchy as hell and covered world history from 1949 to 1989.

 

I heard the song again for the first time in years just the other day.

 

[video:

100×100]

 

The year of my birth is covered by exactly five words:

 

“…Palestine, terror on the airline.”

 

In 1976,  the United Nations passed a resolution calling for an independent Palestinian State and a mix of Popular Front for the Liberation of Palestine and German left-wing revolutionaries hijacked Air France Flight 139 and had it flown to Entebbe in Idi Amin’s Uganda, where it stayed until Israeli commandoes liberated the passengers and crew and killed the hijackers.

 

But what really stuck with me this time is the last two lines of the chorus:

 

We didn’t start the fire.

No we didn’t light it but we tried to fight it.

Now I know that Joel wrote the song as a response to criticism of his generation, the Baby Boomers.

 

William Strauss and Neil Howe are (or were, as Strauss died recently) the premier researchers of American generations. Their seminal book Generations covers all American generations from the early days of the Colonies to the birth and childhood of the “Millennials” (the high school class of 2000).

 

Millennials were preceded by what Strauss and Howe called “The Thirteeners,” so-named because they are the thirteenth generation born under the American Flag. Born from approximately 1964 to 1981, we are better known by the somewhat derogatory term “Generation X,” although I don’t mind that title at all. In the early 90s, during the height of Grunge music, Time magazine bemoaned our generation as apathetic (we vote less that preceding or following generation). We were the “slackers.” We didn’t give a shit about anything or anyone. This was blamed on four factors: First, we were the first generation to experience the large scale divorce of our parents. Second, we entered a largely declining economy (with the exception of the Dot-Com Bubble of the late 90s/early 2000s, what a dollar will buy has declined every year since 1969). We were the first generation ever in American history expected to make less than our fathers before us. Third, we were born into what Strauss and Howe refer to as a “Spiritual Awakening,” and children born during this part of their four part cycle tend to grow up under-protected. We were the first “latch-key” generation. We played in the streets and our parents neither knew or cared where we were (no paranoia about child predators back then). Strauss and Howe argue this is reflected in the “Bad Child” popular in the 1970s like The Omen, The Exorcist, The Warriors, even the “Death Wish” series where Charles Bronson is forever plugging unruly teenagers. Very different from The Little Mermaid and the “Disneyfication” of childhood in the 1980s. Finally, we grew up when the Soviet Union was still around. Until Gorbachev, there were plenty of movies like Red Dawn and War Games to make us believe that nuclear destruction was very much a possibility.

 

My first thought when hearing Joel’s song again was “Why hasn’t a Gen Xer written a song like this?”

 

My next thought was:

 

We didn’t light it but we tried to fight it.

 

Really?

 

I found myself getting angry at this. You tried to fight it? Really?

 

In so many ways that song is classic Baby Boomer: Like Billy Joel in the video, you just sit there, watching, shaking your head as the world goes to shit.

 

You saw the entire second half of the 20th Century. As youth, you challenged and brought down the repressive institutions that your parents, the illustrious “War Generation,” refused to do anything about. You took to the streets for Civil Rights, Equality. In your youth, you fought the law and you won. You won the right to vote at 18. You got us out of Vietnam. You turned us away from the oppressiveness of the 1950s that you grew up under. Everything that is good about America today we owe to you. You showed us what people, what democracy, could do.

 

What the fuck happened to you?

 

You didn’t just “try to fight it.” You did fight it. Then you stopped. Why? You were on the verge of changing the world forever and you stopped. Why?

 

Whatever fighting you did was long over by 1989. By then you were just sitting there, like Billy Joel, watching the world burn, content to say, “It will still burn on when we are gone.”

 

Every time I talk to someone who has worked in the mental health field for many decades, they always say a version of the same thing: “We are still dealing the same problems we had forty years ago. Not much has changed.”

 

They aren’t talking about the illnesses. We still don’t know enough but we know more than we did then. What they are talking about is the lack of support for the mentally ill and their families. In the mid-1970s, a group of War and Silent Generation parents started meeting in each other’s living rooms to talk and commiserate about the lack of help for their now adult mentally ill children. Thirty-five years later we are still doing the same fucking thing, except that now our children are actually still children. Eventually, those parents formed NAMI in 1979, to provide the supports that didn’t exist. In 2010, we set up the Jani Foundation to do exactly the same thing, except now it is provide the services that our generation of parents can’t even get NAMI to do. We can’t meet in living rooms because we can’t leave our children in anyone else’s care so we support each other through online support groups and Facebook.

 

So Boomers, let me take a moment to sit down across the table from you in this kitchen. Let me tell you how the fire is still burning.

 

Jani.

 

I am not sure what direction she is going in, which is making it harder for me to follow.

 

Two major events are happening right now.

 

Jani suddenly doesn’t like herself anymore. Yes, I know she used to change her name all the time. She hated the name “January” and still does. But back when she was three and four changing her name, she was changing her name to things like “Hot Dog” and “Seventy-six” and “Blue-eyed Tree Frog.”  She wanted another world, a world that we would come to understand was Calalini.

 

Now she is not changing her name. Now she doesn’t like herself. Her as a person. When anybody asks why, she says “Because I have schizophrenia.”

 

Not the label. The disease itself. She hates the symptoms.

 

For the first time since she was three years old, she has become aware of herself.

 

She knows she exists in our world.

 

For those of you who still doubt that medication can work, there is your proof. She has achieved self-awareness.

 

How else do I know this?

 

When people first started recognizing her from the media appearances, she didn’t seem to care. She didn’t care about Oprah. She didn’t care about 20/20. She didn’t even care about “Born Schizophrenic.” The latter continues to air on OWN on a fairly regular basis and more and more people keep coming up to us, having seen it. A few months ago, Jani started to smile. “You saw me on TV?” she asked, a smile on her face. This was my first realization that she was even aware that she had been on and continues to be on TV. Every time we met someone, she would ask us to tell them what she had, and if we wouldn’t do it, she would.

 

The other day, a woman recognized Jani from “Born Schizophrenic.” She started talking to her, wanting to meet her, to get to know her. Jani screamed and hit her.

 

“I don’t like myself because of the schizophrenia,” she keeps telling her therapist.

 

Yet she continues to see and hear hallucinations. For a long time they were more background noise than anything else. Now they are coming back front and center again. And new ones are appearing, new hallucinations for the first time in over two years.

 

And when Jani is interacting (or getting me to interact) with her hallucinations, she is happy. When she is in our world, she is not. It used to be that there was no clear line between her world and our world. Now it appears there is. When she is present, she is very present. And she has achieved self-awareness. She knows she is different. She always knew she was different but it didn’t seem to bother her until now. We don’t know where this is coming from. Susan and I don’t see any reason why her illness should hold her back from anything. We don’t limit her in anyway.

 

Maybe it is because she has no flesh and blood friends. We continue to try but they all eventually go away. I know everybody loves the story of Jani and Becca, the idea of two girls with schizophrenia growing up with each other. But you can’t control life. Becca moved. Not that far away but we never see them anymore. From what I hear, Saphris has done wonders for Becca. And remember Becca was two years older than Jani. And Becca was always more present that Jani was. What you see in the Oprah clip is Becca before the Saphris. I think the Saphris has allowed Becca to resume growing up. And Jani got left behind. Justin Beiber means nothing to Jani.

 

But she is trying. She likes Florence and the Machine’s “Dog Days.” Of course, because it mentions the word dog. But she knows all the words to the song. She likes Phoenix’s “1901,” although she has a hallucination, a girl, named 1901. She can sing the words to that as well. She knows Foster the People’s “Pumped-up Kicks,” although she changes the lyrics to “All the cats with the scratch, scratch, scratch, you better run, better run, faster than my thorazine.” Because 400 still scratches her. My biggest hope is Death Cab for Cutie’s “You Are a Tourist.” She likes that song and doesn’t change the lyrics and it makes no mention of dogs or cats or numbers.”

 

I think Jani is trying to grow up. She is almost nine. Puberty is around the corner. I never thought she would become so self-conscious. In a way, it is a victory, as much as it pains me to see her dislike an aspect of herself. To be self-conscious is the opposite of psychosis. Now we are trying to remind her that one thing does not define a person.

 

So Jani has come back. She is different now. But she has come back and she is growing up.

 

But something else is happening as well. Today in Barnes and Noble, Jani pulled down her skort and underwear, convinced she was having diarrhea. She wasn’t.

 

This has been going on for a few weeks but it is getting worse. She cries and screams in the shower and put her hands up her bottom, convinced that she is having loose stool. My attempts to convince her it is just the feeling of the water running between the cheeks is for naught. Jani won’t go swimming anymore. That is how we used to get through the summer and now she won’t go. She won’t do anything that will make her bottom wet because she is convinced it is diarrhea. She screamed and cried all through her horse therapy this week. It was hot, over ninety, and she was sweating, which again made her feel weet.

 

But today was different because there was no physical wetness at all. It was a cool day. Her clothes were dry. She wasn’t even sitting on something cool. Yet she was convinced she was having diarrhea. This went on all day. She cried and shifted in her seat in the psychiatrist’s office, convinced again. She could feel it. But there was nothing there.

 

Tactile hallucination.

 

Feeling something that is not there.

 

I have never seen it this strong in her before. In my desperation to alleviate her panic (for that is what it is) I tell her even it was, it’s no big deal. I have crapped my pants on numerous occasions as an adult where I got caught before I could reach a bathroom. It happens. You just clean up. Jani wants to “clean up” all the time when there is nothing to clean up yet every time she gets in the shower or bath she is convinced she is having diarrhea.

 

It is a never ending tactile hallucination and we have no idea what to do.

 

School is out and her schedule is off. Summer school is only two weeks away but getting there is going to be hell.

 

And Susan and I are cracking around the edges.

 

You see, it used to be that we could trade off the “challenging child” for the “easy child.” Jani was work, constant work. Bodhi wasn’t. Except now he is. He will fly into screaming rages for no reason we can tell. He hits himself. This morning I woke up to the oven door open and him playing inside with his cars. I had already removed the stove burners and the knob that turns the stove on but this scared the shit out of me. Susan’s uncle, her father’s older brother, burned to death in a stove back in the 30s as a toddler. My father in law was the “replacement.”

 

Bodhi is fine as long as he gets constant attention.

 

Just like Jani.

 

But they need different attention. Jani needs animals. Bodhi needs physical stimulation like “Ring around the Rosie.” He needs to spin and climb and rough-house.

 

So we shuttle back and forth between two special needs children, without end, without break.

 

Susan suspects Bodhi has schizo-affective. I wanted to believe autism but the more I talk to parents with autistic children, the less of Bodhi I see in common with them and the more I see in common with Jani. He is just not as verbal and is not as able to articulate what is going on.

 

If you have ever wondered why Jani’s diagnosis was not a shock to me, it was because I knew. Deep down I knew. Deep down all parents know. But I knew because I had lived through it already with my mother. And if you wonder why I refused to send her away, even at the expense of Bodhi, it was also because of my mother. I failed to keep my mother from slipping further and further into her world. But in the end I could only do so much. I was the son. This time I am the father. I had to see Jani through, no matter what.

 

But the possibility that Bodhi might have a mental illness (and no he is not medicated-he is too young) has ripped me apart in a way Jani never did, never could have. I was prepared to follow Jani where-ever she went because she was my responsibility. But I thought Bodhi would be okay. I was fooled into thinking he didn’t need me because he always slept, while Jani never did, because he eats meat, which Jani never did, because he isn’t the sponge Jani was.

 

I was fooled. I needed to believe he was “normal” so I could justify the extra time I spent on Jani. I have always been affectionate and loving to Bodhi. He has never wanted for love. But time? Yes.

 

I know siblings of those with schizophrenia have a fifty percent change of developing a serious mental illness themselves.

 

I knew that.

 

But genetics skip. Maybe he might be depressed. Maybe even bipolar. But not hallucinations. Not disordered thinking. Not violence toward himself. Not no sense of his own well-being.

 

I didn’t want him to suffer like Jani has suffered. I wanted him to be free to enjoy his childhood.

 

And if you want to blame me for Bodhi’s deterioration, go ahead.

 

Because I deserve it.

 

You know why we had Bodhi?

 

We weren’t going to have a second child. But Jani was lonely. She would tell us that “nobody gets me.” No matter how many playdates we took her to, she would not connect with the other child. She would go off by herself, with what we thought then were “imaginary friends.” When she did play with other kids, she would get angry when they had to go home. “I hate you!” she would scream at them. When we tried to explain that we would see them again soon, Jani refused to believe it. For her, every playdate ending was always the final goodbye. And she would turn away, saying “Fine, I’ll play with 24 Hours.”

 

24 Hours.

 

A full day.

 

How interesting that she named a hallucination who never leaves, never has to go home, never has to eat dinner, never has to sleep, “24 Hours.”

 

We conceived Bodhi because it was the only way to give Jani a friend who would never leave her.

 

Sound horrible? People have children to provide a bone marrow match. It’s not that much different. We conceived Bodhi to save Jani’s life.

 

And I remember saying to Susan, “I hope we get another one like Jani.” I was willing to go through all the sleepless nights again if it meant Jani would have a companion who “got” her.

 

This was before I knew Jani had schizophrenia.

 

Susan actually prayed to God to give us another one like Jani. For her. So she would have a friend.

 

And now we know that God listened. God did make Bodhi like Jani. Not exactly the same. But something in him is growing, pushing its way to the surface.

 

Bodhi doesn’t have a name for what he has and probably won’t for years to come. But it’s there. Something is there. Not exactly the same. But it is coming.

 

A new war is beginning. And I have to go in after him.

 

I can’t fight two wars at the same time. Maybe I could if Jani was doing okay but she has taken a turn for the worse again. Better and worse at the same time. She is a rose that I cut myself on her thorns.

 

I am not yet bleeding on the outside for Bodhi. Maybe I never will. But I am bleeding on the inside. My best intentions laid to waste.

 

So I am going to hell. At least I don’t have to worry about the rent, I suppose.

 

Oh, yes I do. I still have to carry on.

 

I will have to give more time to Bodhi and pray to God that Jani doesn’t get worse without me around as much.

 

I cannot fight a war on two fronts.

 

Three if you count the lack of money.

 

So that’s my story, Mr. Joel. That is the fire going up behind me.

 

No, you didn’t start it.

 

Where were you when Reagan closed down the state hospitals?

 

Where were you when Nixon collaborated with Kaiser Permanente to create the current insurance system where insurance companies and not doctors determine care that is given?

 

Where are you now that you own generation, now a plurality in Congress and the State Houses, continues to hack away at mental health care services?

 

Where were you when Seung-Hiu Cho shot and killed 32 people at Virginia Tech, even after he was referred for mental health services, because the contracted agency, much like the Santa Clarita Child and Family Center here, didn’t think he was their responsibility to follow up on?

 

Where were you when Jared Loughner, who had been in a state of rapid decline for more than a year, killed six people including a nine year old girl?

 

You didn’t start the fire?

 

No, but you are the fucking ones in power now. And you are squandering it over petty fights about taxes and debt ceilings. In your youth, you changed the world and now you sit there while it comes to its knees.

 

I may be Generation X, but I am no slacker. Like the rest of my generation, I am pragmatist, a problem solver.

 

No, the fire will not keep burning.

 

Because we will put it out.

 

Even if it kills us.

 

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"Born Schizophrenic: January's Story"

“Born Schizophrenic: January’s Story,” originally aired on Discovery Health Network May 4th, 2010, can now be purchased at the following link: http://store.discoveryeducation.com/product/show/105172

 

Note: We do not receive any percentage of the sales of this DVD. However, I know many of you have asked how you can get “Born Schizophrenic” for educational purposes and it is now available.

If I Only Could, I'd Make a Deal with God (For Eri)

This is my first real blog since “Watching the Wreckage.”

 

That was interesting.

 

First, if you are expecting me to apologize for it, you will be disappointed. I have no regrets. Some things did surprise me about it, though. One, it was my highest viewed blog entry. Ever. Two, I was surprised by how personal some readers took it. And I don’t mean the attacks on me. That didn’t surprise me. I expected some of that because I always get some of that.  I long ago learned that not everyone is going to agree with me (to put it kindly), that some are always going to use what I say to push whatever agenda they have.

 

What surprised me were the reactions from long time readers who thought I was speaking directly to them. I am, after all, just a guy writing a blog and I don’t think it fully hit me until I wrote that particular blog that a relationship exists between some of you and the words I write, and since the words I write are essentially a representation of me at that given time, a relationship exists between you and me.

 

I didn’t realize that. I didn’t realize the impact this blog has, not because of what I say, but because of how some you interact with it like you are interacting with me. You argue with me, but you argue with me like you do with a family member or a close friend. Sometimes you love me. Sometimes you hate me. But you keep coming back. Perhaps it is because I acknowledge you in your comments.

 

Or maybe it is because you aren’t watching the wreckage. You are in it, too. Where-ever you are, your car has gone off the road too. You have hit a tree. You have crashed as well. And you are trapped inside, unable to get out. And you fear you will never get out. So you turn on the radio, flipping stations, looking for something that will give you comfort. And somewhere along the line you heard my voice, coming from my own car crash. And it gave you comfort to know you are not alone.

 

But I am a fraud.

 

Brief pause while my critics get all excited.

 

I am a fraud because I am a passenger, not the driver. I am in this wreckage because I refused to get out of the car, although I have thought about it many times.

 

I am reminded of how much of a fraud I am every time Jani talks about her hallucinations. Right now, as I write this, Jani is having a sleepover. One of her friends is staying with us.

 

This friend volunteers at the local animal shelter, working with the cats. On our way there today, Jani told us she would meet us there. As we headed, Jani ran up to her excitedly, saying “Hi!”

 

But I wasn’t looking.

 

“Daddy,” Jani called me, “Say hi!”

 

I looked over, hoping that Jani was pointing, hoping she would give me a fixed spot in space to look at.

 

“Say hello to 38 Hours,” Jani says to me like I am being rude.

 

“Hi, 38 Hours,” I called, trying to act like I could really see her there.

 

“She’s waving to you,” Jani says. She knows. Of course, she knows. She’s not stupid. She knows I can’t see 38 Hours. But she is still trying to communicate.

 

Why?

 

I pretend for as long as I can. I really do. I feed her hallucinations (literally). I give them their medication (because all the “humans” have various mental illnesses themselves). I go until I crack, until I can’t pretend anymore that the person Jani sees has the same care needs she does.

 

Jani reminds me of the interpreters who accompany my deaf students in class. I drone on and one, watching out of the corner of my eye as the interpreter translates what I am saying in ASL. Of course, I have no idea what the interpreter is really saying. ASL and English don’t always have exact word for word translations, and the interpreter is translating on the fly, trying to keep up with me. But what always sticks in my mind is the student’s eyes, locked on the interpreter, not me.

 

In real life, I am the deaf student. My eyes are locked on Jani because I cannot hear what the hallucinations say. I am deaf to them. But I know they are there, just like my deaf students know I am there even though they can never look at me for fear of missing something I say. I can’t look at them. So I watch Jani. Jani is my interpreter. She interprets what they say for me and in turn she translates what I say back to them.

 

American Sign Language (along with the myriad other sign languages) was developed to give the deaf a voice, to communicate their world to us. That is why we used to call them “Deaf and dumb,” dumb referring to the inability to speak rather than intelligence. Although in Deconstruction Theory, words simultaneously contain all possible meanings. I don’t know if Michel Foucult is right about this but certainly in the case of “dumb,” while the denotation is “inability to speak,” the connotation of “stupid” was also present. Clearly we recognized the offensiveness of the word or we would not have stopped using it.

 

The desire to communicate is powerful. It is a basic need. That is why I think Jani keeps translating for me even though she knows I can’t see and will never be able to see what she sees. She still needs to communicate.

 

Most of the time, I play along. Because I fear if I don’t one day she will stop trying to communicate and I will be left forever on the outside. If somebody is trying to communicate with you, you have to try and communicate back, even if you don’t know the language. It is how we acknowledge each other as human. Even if you have no clue what they are saying, you have to try and understand because they are trying to communicate with you. It is your duty as a human being. Otherwise who don’t speak our language become nothing more than pets, because we tend to ignore our pets until it is convenient for us.

 

That’s why I don’t try to tell her her hallucinations aren’t real, as has so often been asked of me. Because they are real to her. Me telling her they are not will not change her reality. And as long as she is willing to communicate to me, I have to be willing to try and understand.

 

But every so often I crack. After listening to her and talking back to them through her all day, after having to listen to their needs and desires all day, I break down and I yell. It usually happens when I also have Bodhi and am trying to meet his needs while Jani is hovering in my ear, telling me that 28 Hours or 24 Hours or 1901 or 80 needs something. When it just me, I can fake it. But when Bodhi is crying or hungry or needs a bath or wants me to read to him I can’t fucking take it anymore. I yell “Jani, 24 Hours isn’t real! Bodhi is real!”

 

Jani just stares at me like I have slapped her. Then she turns and goes away. She goes to hide under the mattress.

 

And I feel awful.

 

She was just trying to communicate her reality, which overlaps this reality, while I can only see this reality.

 

Later, I try to apologize. I explain what she already knows. I can’t see 24 Hours or 28 Hours.

 

And I tell her I wish I could.

 

Because I do.

 

I wish I wasn’t deaf and blind to what she hears and sees.

 

There is a whole world that Jani experiences that I never can, no matter how much I pretend.

 

That is why I am a fraud.

 

To those of you in trapped in your own car crashes, I am a fake. I pretend I can relate but I really can’t. And I never will be able to. All I will know is what you and Jani tell me.

 

And that kills me.

 

I get to be alone inside my own head. I have a space where no one else can ever enter.

 

You and Jani don’t. You are never alone. You have to share even your own mind.

 

No matter what anybody in the world says to me, I will go to bed safe in my own mind. You and Jani never can.

 

People sometimes call me “a hero,” as if my commitment to Jani given her illness somehow qualifies me for that title. The commitment is a given. I am no hero. I am just a father doing his job, which, by the way, includes me having to beg my readers for money to pay the rent. Some of you don’t like it. Too bad. Deal with it. Because I am not going to stop until I don’t have to do it anymore. Hopefully that day is coming soon because as soon as my publisher accepts a final draft of my book for publication and it goes to the copyeditor, the next quarter of my advance pays off. Since the book is scheduled for release next March, it needs to go to the copyeditor by the end of July at the latest (they need a nine month lead time to publish). I just turned in my second draft and am awaiting feedback. There will be a third draft and maybe even a fourth.  Right now I am seven hundred short on rent for the second apartment for June. I will short on both in July. I will be short in August. So I am going to keep coming back here and asking for financial help until I get that next advance check.

 

Don’t want to read that? Don’t think I am “making the right decisions?” Stop reading.

 

What I need is money. What Jani needs is the chance to keep finding her way between this world and her world.

 

My hero is Jani and every other mentally ill person out there in my readership. You are my heroes because what you live with everyday is far tougher than anything I have ever done or will ever do. Somehow, you function despite the constant conflict between our reality and another reality. And both of them won’t ever leave you alone.

 

I don’t know how you do it. The rest of us “neurotypicals” would slit our throats. We are weak. You are strong, far stronger than we will ever be. You keep running up that hill, knowing that you will keep running up it for the rest of your life.

 

All I can do is promise I will run beside you, like I run beside Jani. I will never be able to know what you experience. But I will always be there next to you.

 

People have criticized me, saying I “chose this life,” referring to our constant money problems. Damn straight I chose it. And I have no regrets and I will never apologize. You don’t want to give me money? Fine. I will go on to the next person, and the next person, and the next person.

 

Maybe I am finally embracing who I am. Yes, I can be a jerk. But I will do whatever I have to do to keep my family and as many other families with mentally ill children afloat.

 

Some of you, those of you like Jani, have no choice but to keep running up that hill. It is either that or die, and I don’t want that because your lives have as much value as us neurotypicals.

 

I do have a choice.

 

And my choice is to keep running up that hill with Jani.

 

And with you.

 

 

PS: Strangely, I am having a harder time coming to terms with Bodhi’s autism than I did with Jani’s schizophrenia. Maybe it is because I knew something was wrong for years and kept searching for help while so many others refused to see what I saw until they couldn’t ignore it anymore. But I really wanted to believe Bodhi would “turn out okay.” Partially because I didn’t want him to suffer as Jani has suffered and partially to alleviate my own guilt at putting Jani first through his early years. Now I have to face it. There is no doubt he is autistic. Whatever else he has, if anything, remains to be seen, but he is definitely autistic. Jani had the language to communicate. He doesn’t, so I struggle more with him than I do with her. It is so much harder to penetrate his world. But I will run up that hill too.

 

Now I just have to learn another language.

 

His language.

 

You know, Jani understands his speech better than I do.

 

Maybe she will be his guide after all.

 

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The Cause

 The following is the new “Our Cause” page. I am putting it up here as well. I know I haven’t updated on Jani for awhile. I promise I will write a new real blog in a few days. But remember this isn’t a blog just about Jani. This is a blog about life with mental illness. And I am not going to just complain. I am going to do something about it.


Manifesto of The Jani Foundation

 

 

The purpose of the Jani Foundation is to improve the quality of life for children with mental illness and their families/caregivers. Primarily, the focus of the Jani Foundation is on aiding children with mental illness that includes some inclusion of psychosis, be it schizophrenia, psychosis NOS (not other specified), bipolar with psychotic features, or a child exhibiting symptoms such as delusional/paranoid thinking, hearing “voices,” (“commanding” or otherwise), consistent engagement with or fear of individuals only the child can see, or violence that does not appear to have an “external” trigger.

 

Education:

 

The Jani Foundation believes that all mental illness is BIOLOGICAL in origin. We reject the idea that psychotic illness can be “created” by any external forces. Although we acknowledge that psychological trauma can exacerbate psychosis, IT CAN NOT CAUSE IT. We believe this for the simple fact that if trauma caused psychosis, all humans would suffer from psychosis. Unfortunately, we all experience psychological trauma. It is part of the human condition. By the simply being alive and having to interact with the environment, a person will get psychologically hurt. The fundamental flaw with the trauma-based or “environmental” model of the development of psychosis is that if indeed the human mind was that fragile our species simply would not have survived to the present day. Such a glaring weakness in our psychological composition would have led to our extinction long ago. Our ancestors faced trauma on a daily basis and yet our social development has continued.

 

Therefore, psychological trauma, no matter how severe, does not cause psychosis. You cannot induce or create psychosis in an individual, any more than you can induce or create cancer.

 

But wait a minute, you say: many external factors cause cancer.

 

No, they don’t. Yes, smoking, exposure to asbestos or other chemical poisons, or radiation CAN increase the risk of cancer. But there are those who smoke for years and never develop lung cancer. Likewise, there are those who never smoke a cigarette in their life but still develop lung cancer.

 

This is because what ultimately decides our susceptibility to cancer is our genetics, whether or not we have a genetic “predisposition” to cancer already contained within our DNA.

 

So it is with mental illness. Just as with cancer science has not been able to establish an ironclad connection between cancer and genetics, science has yet to establish such an ironclad connection between genetics and mental illness. We have mapped the human genome, but that is only the beginning. We still do not know what many genes do. We understand only the basic function of most, and even that is mostly an educated guess.  It may be decades before we understand how the sequencing of the genetic code can produce mental illness This is further complicated by the fact current genetic research is showing that predisposition to certain illnesses is likely not the result of a single gene but is probably caused by multiple genetic combinations, perhaps number in the hundreds or thousands. However, just as having the presence of a type of cancer in one’s family background increases your risk of that type of cancer, there is sufficient evidence that having the presence of mental illness if one’s family history dramatically increases the chances of one’s child or children having a mental illness as well.

 

Then there is our limited knowledge of the brain. Neuro-science, compared to other fields of medicine, is still in its infancy, due to fact that the technology that allows us to understand how the brain functions (such as the dopamine receptors in the brain) is relatively new, and because that technology is massively expensive and insurance companies often won’t pay for a single MRI, let alone multiple MRIs taken over a period of years.

 

Purpose of advocating for the biological model of mental illness:

 

  1. To improve development of medications that can target specific areas of the brain that are not functioning properly.
  2. To provide further evidence to eliminate “behavioral treatment plans” which essentially treat mentally ill children and particularly mentally ill adolescents as “bad kids.” There is a biological reason for their anti-social behavior. Mentally ill children and adolescents are well aware of what the consequences of their actions are. Yet they persist in their behavior. Doing something that one knows will result in punishment or the loss of privileges and doing it anyway is the very definition of “insanity” (which is a legal term, not a medical one). It is not in our nature to seek pain. It is in our nature to make our lives as easy as possible. A child or adolescent who continually “acts up” despite awareness of consequences does so because he or she CANNOT control their behavior. Behavior must be “redirected,” which means getting the child to focus on something else, something positive, rather than punished. All punishment teaches mentally ill kids is that “we,” the rest of the society, cannot be trusted.
  3. To end the blaming of parents for the child’s mental illness. Parents love their children no matter what, but often find themselves the target of social services when they seek help. To often this leads to increased stress and dissolution of the family unit. We believe that the family unit is a mentally ill child’s best chance to reach his or her full potential.

 

Educating the public that mental illness in children is not a new phenomenon:

 

The diagnosing of children with severe mental illnesses like bipolar and schizophrenia is nothing new. It SEEMS new only because of “deinstitutionalization,” the process of closing state run mental hospitals that began in the late 1960s and continued through to the late 1990s. Had she been born in the 1960s, Jani would have been placed in the “Back Ward” at Camarillo State Hospital in Camarillo, Caifornia, the ward reserved for the most severe cases that could not function outside the hospital. I know this because I have met several nurses and social workers who worked there decades ago. There were children as young as twelve inside Camarillo State. When Governor Pete Wilson ordered Camarillo closed in 1997, most of the 300 remaining patients were under age 18, of whom most ended up in “group homes” scattered around Los Angeles County.

 

However, the Jani Foundation does not support “re-institutionalization.” We do advocate for the building of more inpatient hospital units for children, more beds in units that already exist, the separation of children and adolescents (as most hospital psychiatric units combine both children AND adolescents), and the development of psychiatric emergency rooms.

 

We support the continuation of the current system of hospitals serving as “acute” treatment centers only. However, insurance company “doctors” who have never seen the patient currently have the ability to deny payment for continued days. This process must end. The treating facility and the treating facility alone must be the ones who determine how long a stay is needed to stabilize a child dealing with psychosis, not insurance companies. The Jani Foundation supports the enforcement of “parity laws” which were designed to force insurers to treat mental illness the same way they treat physical illness.

 

Call to Action:

 

  1. A federal law must be passed that prevents insurance companies from overriding the input of the treating physician.
  2. Such a law must prevent insurance companies from dropping coverage on children with mental illness or reducing mental health benefits. All mental health benefits should be unlimited (unlimited inpatient days and unlimited outpatient psychiatric and therapy visits).

 

 

Generally, the Jani Foundation opposes sending mentally ill kids to “residential treatment centers” and is completely opposed to sending them to “group homes.” First, this does not help mentally ill children integrate into society. Failure to learn to function with their mental illness in society can lead from residential straight to jail.

 

First and foremost, we believe the family of the child is the best environment for the child. Therefore, it becomes our responsibility as fellow citizens to ensure the child and family have the support they need.

 

If residential becomes necessary, we will only support and recommend those residential treatment facilities that have the following:

 

  1. The staff must be psychiatric nurses, because they have experience and knowledge with the medical needs of these children and the potential side effects of the medications. Most facilities do not have a nurse available 24 hours a day, 365 days a year. This is shocking.
  2. There is a psychiatrist on call at all times.
  3. The facility can deal with medical problems. This means there must be a medical doctor on call at all times.
  4. The facility uses positive reinforcement of behavior ONLY. We oppose the use of restraints, mechanical or otherwise. We also oppose any facility that “locks” a child away, alone. If a child is psychotic, the worst thing you can ever do is leave them alone with their own mind. They are human beings. Talk to them. Play with them.
  5. The facility believes in the biological model of mental illness
  6. The facility encourages parental involvement.
  7. The facility encourages interaction between the children/adolescents and the community. These places are not meant to be prisons.

 

 

Call to Action:

 

  1. Child Protective Services needs to be checking up on the welfare of mentally ill children and adolescents inside residential facilities. Abuses must be investigated.
  2. All employees of residential treatment facilities must be trained in the nature of psychosis and how to appropriately deal with it. Outside of nursing, advanced degrees in medicine, psychology, physical and recreational therapy, and education should be required.

 

 

Current Failures of Mental Health Care as We See It:

 

There is a six-prong failure of the current mental health care system in the United States. They are:

 

  1. Lack of government funding:

 

This lack of funding predates the current economic problems in the United States. Taxpayers seem perfectly to let their money be used by state governments to hire private companies to build more prisons, but they don’t want to spend the money on services which would eliminate the need for increased numbers of prisons, as well as being less expensive in the long run. Currently, the California Department of Corrections is the largest provider of mental health services in the WORLD. Because of failures to fund local preventative services, many mentally ill individuals do not receive mental health care until they commit a crime.

 

The Jani Foundation does not support either Republicans or Democrats. This has nothing to do with 501c3 rules against political support of candidates because we are not, as yet, a 501c3. Rather, it is because neither party gives a damn about mental health, either for children or adults. Pushing for increased funding for mental health services is not politically popular. It is easier to generate a sound bite about being “tough on crime” than push for local and state mental health care services. Even though a mentally ill young man very nearly killed one of their own (US Representative Gabrielle Giffords), Congress still doesn’t seem to care, perhaps because it doesn’t affect their children. The other issues is that there is no “quick fix” for mental illness. These illnesses are lifetime illness and the truth is we must support these children and their families FOR LIFE.

 

  1. This lack of funding for existing services like California’s “AB3632” law that requires school districts to provide mental health services to students means that state and local agencies participate in what we call “the politics of exclusion.” Rather than the goal being to provide services to as many people as possible, the goal of these state agencies (like the Department of Mental Health, Regional Centers, and contracted private non-profit agencies like the Santa Clarita Child & Family Center) is find any excuse they can to DENY services in order to preserve their meager budget.
  2. What money does trickle down to these agencies is wasted by a bloated and uneducated bureaucracy. For example, absolutely no one at the Los Angeles County Department of Mental Health has any experience with severe psychosis, either in children or adults. These workers are bureaucrats who push papers and list rules, not provide real help. What these agencies need are not Masters’ of Public Administration. They need psychiatrists and psychologists trained in dealing with psychosis.
  3. The “services” that exist are designed for the short-term, not long term support. Services like “WrapAround,” are designed to “teach” parents how to “handle” their children, ironic considering that we have yet to meet a Wraparound worker with any experience in dealing with psychosis. Wraparound is a short-term, behavior modification based program designed to teach parents how to be parents. What parents of mentally ill children need is respite care (which state workers experienced with psychosis), financial support (as gradually taking care of a mentally ill child erodes one’s ability to work, unless the child is sent to residential care), and access to therapies that will help their mentally ill child, such as animal therapy, equine therapy, art therapy, recreational (play) therapy, occupational therapy, and social/peer groups (as mentally ill kids feel more secure when they are with others who “get” them). Mental illness is a life-long affliction and the Federal, State, and Local governments must realize that a “band-aid” solution of sending out a recent college graduate in psychology to judge your parenting will not prevent the alienation of mentally ill children in our society.
  4. The reintegration of psychiatry and psychology: Ironically, psychology was born from medicine. Freud was an MD. Yet as the 20th Century progressed, psychology moved further and further away from the science that gave birth to it. Modern psychology has become a joke, based more on “pop-culture” psychology than real clinical research. This leads to such ridiculous things as social workers and psychologists accusing a parent of a mentally ill child of “Munchausen By Proxy,” or the manufacture of a mental illness in their child to get attention. If psychologists had more medical knowledge or were actually required to do real clinical research for their degrees, they would know that has NEVER BEEN a confirmed case of a parent “causing” a mental illness. Munchausen By Proxy is a term used by forensic psychologists to describe parents who caused a PHYSICAL ILLNESS in their child during a criminal trial for murder, attempted murder, or child abuse. This is an example of “pop psychology” being applied in situations where it is not appropriate and since CPS social workers can remove a child from a parent without needing to show “just cause” (the only aspect of the criminal justice system that can do this), families get broken up.

 

The Jani Foundation advocates the termination of the “Marriage and Family Therapist” degree and the elimination of psychology as a separate area of study from medicine. We propose that psychologists and psychiatrists be educated together, leading to the eventual end of psychology as a separate field from psychiatry and the reintegration of the two sciences back together.. Honestly, the best therapist we know is our psychiatrist. She works more like a therapist, talking to Jani and to us, getting to know us, and not just prescribing medication in 15 minute sessions.

 

  1. The failure of current non-profit organizations focused on mental illness.

When NAMI was formed in 1979, the landscape of mental health care in America was very different. State hospitals still existed and long term care was available. Services existed then that do not exist now. Therefore, NAMI’s focus became education about mental illness and the fighting of stigma. But what good is educating parents about mental illness IF THERE ARE NO SERVICES AVAILABLE TO HELP THEM. It is like being told you are going to die but not how to save your life. The Jani Foundation opposes donations to NAMI, The Child & Adolescent Bipolar Foundation, Autism Speaks, and any other organization that does not provide DIRECT SUPPORT to families dealing with mental illness. Families with mentally ill children need real services like respite care and financial support to keep a roof over their heads and food on the table. Our children require full time care. They must be watched all the time. That makes it difficult to work a full time job. I understand that the need is greater than what any non-profit can provide, but as long as the government fails to provide real help, the non-profits must. And if they don’t, they shouldn’t be begging for money to survive. Susan and I pay out of our own pocket every month now to help out other families with mentally ill children and we don’t have the pharmaceutical industry funding us or a $250,000 Pepsi Refresh Grant or a portion of sales at Toys ‘R Us (NAMI, CABF, and Autism Speaks, respectively).  If these organizations feel all they can do is “educate,” fine, but they don’t need a ton of money to do that. The money is needed for providing real tangible help to mentally ill children and their families in need.

 

Soon, we will be setting up a financial co-operative between parents of mentally ill children. Everybody pays in when they can and if you need the money to pay bills all you need to do is ask.

 

If you want to donate, make sure your money is really going to a family who needs it, not to pay the overhead of a bloated non-profit so they can make a “video” or write up a pamphlet. You can visit www.facebook.com/janifoundation to see the families in need. Even if you can’t give money, come visit. Come see what families with mentally ill children are really dealing with.

 

And ask yourself why they come to two parents instead of to an organization like NAMI.

 

 

This is who we are. This is who we will always be. We will always be parents of a mentally ill child (or children). If you are ready to fight, if you are ready to commit to a war that will never end, come join us.

 

I can guarantee you, when you see a mentally ill child smile, it makes it all worth it.