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The Song Remains the Same

The song remains the same… and I am beginning to realize why.

 

One of the criticisms of our story that bothers me most is the question If you knew there was mental illness in your family, why did you have children? Or the slightly different but essentially the same question: If Jani was mentally ill, why did you decide to have a second child?

 

I have answered both of these questions before. I don’t like them because the unspoken implication of those questions is out and out eugenics. They question Jani and Bodhi’s right to exist, and by extension, the right of all those afflicted by mental illness to exist. Cancer, heart disease, and diabetes have congenital components but that doesn’t stop those who have the risk from procreating. Partly this is because the cause of procreation is not generally subject to a lot of thought. A man and a woman have sex. Life is created. In other words, not all of us are “planned.” In a post-contraceptive world with seven billion humans, we have the luxury of Monday morning quarterbacking whether we should have “allowed” such life to be created, but the fact remains that such considerations are generally not in the forefront during the act that creates life. And we should be grateful because without that biologically driven randiness from Mom and Dad on a Saturday night none of us would exist. How many of us owe our existence to a couple of glasses of wine, a few beers, and the miscalculation of Mom’s reproductive cycle?

 

The point is life is tenacious. So questioning the existence of a person after their creation is as pointless as lamenting the rising sun. It’s gonna happen.

 

And it doesn’t change our responsibility to the living. It’s not an excuse not to help. It gives no moral superiority.

 

Yeah, that’s right. You are not off the hook because you “decided” not to have children. My children are your children and your children are my children. I am responsible for your children and you are responsible for mine, caused by the simple reality that we share the same society.

But I digress.

 

I just really, really hate people who are advocate eugenics, even if they don’t realize that is what they are doing.

 

As I have said before, it is not like mental illness in our respective families was a topic at the dinner table growing up.

 

Let me ask you this? How much of your family history do you know?

 

You know Mom and Dad, right?

 

Maybe.

What you actually know is what you observed growing up. What you know is your perception of your parents as filtered through your young mind that for which the words “depression,” “Mania,” “bipolar,” “schizophrenia,” and even “autism” have no meaning, assuming you even hear them at all. Looking back now, I have no doubt my mother had schizophrenia. But when I was thirteen, she was just “odd.” Then she became a “freak,” and, as I angrily progressed through my teens and much of my twenties, a “psycho bitch.”

 

It wasn’t until Jani was formally diagnosed, more than a year after Bodhi was born, and a year after her violence began, that I could look back at my mother’s increasingly bizarre behavior through my childhood and see the connection.

 

After the word “schizophrenia” came up in relation to Jani’s behavior in 2008, I learned from dear old Dad that his cousin, my second cousin, had been diagnosed with schizophrenia. This was not jogged in my father’s memory until, directed by Janis psychiatrist, I asked Dad if there was any history of mental illness in our family. This conversation is recounted in January First so I am not going to rehash it here.

 

By that time, my father was my only connection to my family history. I had lost contact with my mother years earlier. To the best of my knowledge, my maternal grandparents are dead. I was never able to find my maternal uncles on Facebook (If anyone knows a Derek Hall that lived in Melbourne, Australia in the early 80s and has a son, Andrew, and a daughter, Julie, shoot me a note. I am also looking for a Michael Hall, my namesake, who was living in Brisbane in the early 80s and has a daughter, Olivia, as well as a David Hall, who is from Ballina, NSW, lived in Sydney and London in the late 70s/early 80s, and has two daughters who I have no clue what their names are but they would be in their early thirties by now). My paternal grandmother died in 2005. She never got to meet Jani but spoke to her over the phone. My paternal grandfather died in 1994. My father was an only child. I have only vague memories of my paternal great grandmother who died when I was a child. My father doesn’t even remember when his grandfather was born. He died when my Dad was just a kid. I knew almost nothing of my father’s cousins until one of the TV shows on us aired in Australia and my second cousin Bettie Anne reached out to me via the Jani Foundation Facebook page.

 

You see the problem here?

 

The Schofield family history is not exactly clear. In fact, it is pretty damn broken. My father says that my grandparents never really talked about the family when he was growing up.

 

It is the same on Susan’s side. News of Jani’s symptoms and diagnosis triggered, “You know, that reminds me of your second cousin [fill in the blank]” after the fact. There are questions about my father in law’s mental health history and he is still alive.

The point is you only know what people are willing to tell you and what they are willing to tell you is what they are willing to face. Even to this day there is no clear picture of what happened in the Susan’s family in the 1930s and 40s and mine in the 1950s and 60s. Just conjecture based on attempts to connect the behaviors of Jani and Bodhi to their ancestors.

 

Strangely though, I know every heart attack and bout with cancer in my family. Susan knows everybody who had diabetes in her family.

 

But this lack of a clear family history of mental illness is just the beginning. This same forgetting of history gets repeated on the macro, societal level as well.

 

You are here, reading this, because you saw Jani and our family on Oprah, or Dr. Phil, or one of the “Born Schizophrenic” Discovery Health/TLC (in North America) specials. What is that they always say? I don’t actually pay attention but it is something to effect of January is one of the rarest cases of childhood schizophrenia.

 

In every media appearance we’ve ever done, the “angle” that they always take is to focus on the “rarity.” Why? Because that is what makes for entertaining viewing. We do media to educate and even if the producers have the best of intentions, ultimately reality documentaries or daytime television or even the local news is about one thing: entertainment. They need you to watch. They need the ratings. So they spend their professional lives looking for what is new, rare, and shocking.

 

Jani’s story, our story, engaged you (assuming you don’t have a mentally ill child and you could directly relate) because you had never seen anything like this before. It was, as I said before, new, rare, and shocking.

 

But it’s only new to you.

 

I am six years into this life now, life with first one, now two, severely mentally ill children. Until tonight, I had never seen anyone like Jani or Bodhi on television.

 

Then I saw Brian in a documentary called Children of Darkness. Perhaps like you felt when you saw Jani on television for the first time, seeing Brian was new, rare, and shocking.

 

Except Brian shouldn’t be new, rare, and shocking. Neither should Children of Darkness.

 

Because it was filmed twenty years before Jani was born.

 

That’s right. Children of Darkness was shown on PBS stations in 1983.

 

Never heard of it? Don’t feel bad. Neither had I. Apparently, it was nominated for the Oscar for Best Documentary Film in 1983.

Then it faded into obscurity.

 

Watch it. Go ahead. I recommend watching it when you have 57 minutes to take it in one go, as well as time afterward to process what you have seen. It will level you. It leveled me and I thought I had seen everything there was to see.

 

At any length, you need to watch it before continuing the reading of this blog. Watch it when you have the time to give it the full attention it deserves and then come back. This blog isn’t going anywhere.

 

embedded by Embedded Video

YouTube Direkt

 

 

So, how do you feel after watching that?

 

Two things bother me about this film.

 

First, how the hell did I not know about this? If you want to know what Jani looked liked during her psychotic episodes, the scene with Brian punching the back seat of the bus in the beginning is exactly the same. If you want to know how Bodhi is doing, I give you the scene at Eastern State School where two people have to hold Brian down because he is trying to pull the dresser over on himself. Combine that with Billy Calhoun’s self-injurious behaviors that require him to be strapped down for all but the three times a day he is made to walk a corridor so his muscles don’t atrophy from being strapped down and you have Bodhi, although Bodhi is not YET as severe as Billy was.

 

As a side note, it is pretty shocking that they were still considering a lobotomy in the early 80s, isn’t it? If Billy’s self harm continued, that option was on the table.

 

For six years I have been searching for a history for children like Jani, Bodhi, Maddox, Mari, Briana, Little Brian, Jessica, Katelin, Andrew, and many many others. couldn’t accept that these children were just “rare” (the explanation of the doctors) or “new” (so many ask “Where are these children coming from?”). I couldn’t accept that it was bad parenting. Hell, I am better parent than a lot of parents I know with neurotypical children and I am sure as hell better, as are most parents today of mentally ill children, than our parents were or parents in general were in the 60s, 70s, and 80s. There had to be a history. I knew from Jani’s first social worker at UCLA, now retired, who had started her career at Camarillo State Hospital (now California State University Channel Islands) that there had been children in the state hospitals, but the state hospitals are gone in California and generally non-existent, especially for children, in other states.

 

I was searching for that history because although I have claimed that there is a history in many prior blogs, I was never able to really prove it. But deeper than that, I needed a history to try and understand how mental health advocacy could have been around for so long yet so little had changed.

Eastern State School and Hospital in Pennsylvania closed in 1995, three years after Camarillo State was closed here in California. Like Camarillo, which also housed children, it was closed in favor of smaller (read “private”) residential facilities like…

 

…Elan. You watched the segment on Elan. Is that a place you would like to be? Elan is closed but this documentary pretty much substantiates all the claims of abuses that have been leveled against Elan by survivors. I guess in 1981-82 when this was filmed they weren’t concerned about lawsuits. Hell, parents were paying $20,000 (over $51,400 in 2013 dollars) to send their kids there.

 

Elan may be gone but there are plenty of “residential treatment facilities” like it today. Your local school district contracts with places like that to take your child if their illness is too severe for district based special education.

 

South Beach Intensive “Care” Unit in New York where the three kids died? Still around, although now it is the South Beach Psychiatric Center and it is no longer a long term facility. Other than mostly private “residentials,” long term psychiatric care no longer exists in America.

 

South Beach in 1981 reminded me a lot of BHC Alhambra in 2008. Leave your children in their care and you might not get them back alive. Those kinds of full body restraints, the canvas bag, are illegal in California but that is still what they will do to your child if he or she should get sent to a “therapeutic residential” in states like Utah or Wyoming.

 

And yes, staff still think patients are “faking it” when their eyes roll back in their heads and they go into convulsions. Even within mental health “care” itself, there are still plenty of staff who believe these kids are “choosing” to be this way and there are still plenty of staff like that guy at South Beach who wouldn’t allow himself to see the patients as people.

 

In short, the marketing has gotten a little more sophisticated but much of mental health care still looks like it did in 1983.

 

Except for one thing…

 

The film says that 20,000 children are admitted to state psychiatric hospitals every year (I am assuming this is 1981-1982 numbers). Yet the state psychiatric hospitals are almost all gone.

 

So where did those kids go?

 

What happened to them?

 

What happened to Brian? What happened to Billy?

 

My research turned up nothing.

 

Absolutely nothing.

 

The media did not follow them. Oprah was still a few years away but where was Donahue?

 

Back then 20,000 kids with mental illnesses or autism or “emotional disturbances” entered and exited the state hospitals.

 

Today, they get flushed through acute psychiatric hospitals, with limited beds and insurance companies breathing down their necks. They get sent to residentials. They struggle through “emotionally disturbed” special ed programs. In almost all states, schools are now charged with providing mental health care.

 

And so a film that I had never heard of, supported by an organization I had never heard of (then the National Mental Health Association, now Mental Health America), finally gave me my history, allowing me to connect the past to the present. Brian and Billy to Jani and Bodhi.

 

Thirty years. Almost a third of a century. Most of my life.

 

And the song remains the same. These kids aren’t “new,” “rare,” or “shocking.” Just new, rare, and shocking to us.

 

Because we lost our history.

 

I’ll bet none of the producers of any of our media appearances have ever seen Children of Darkness.

 

Even worse, I bet most of today’s psychiatrists, nurses, and educators in “emotionally disturbed” programs have ever seen it either.

 

And that is the problem. No history. No understanding of what happened before. Stories about these children come out and are then forgotten. Decades pass. And then a little blonde girl appears on TV thirty years later and history repeats.

 

History repeats because the story, the children, don’t stay in your face. And you forget. I don’t blame you. Even I can forget and I live it.

 

But you know what really scares the hell out of me?

 

In 2043, will there be another child with severe mental illness on the holographic television that grabs hold of the consciousness of that generation, now in their infancy or early childhood?

 

Will I be 67 years old, looking sadly at the shock of society about something I have known about for thirty years, just as parents with adult mentally ill children who have been fighting for thirty years look now at Jani and Bodhi and me and Susan?

 

Will it still be the same?

 

Will it be “new,” “rare,” and “shocking” to the audience in 2043?

 

My God. No. It can’t be. I won’t accept that. I will ram these children down your throat over and over again until you help me change what is wrong with the system.

 

What scares me is that is probably what parents like me said in 1983.

 

I want to leave you with what Dr. Paul Casadonte said in 1983. What he said then is still true today. We need people to take a more active interest in the mental health system….

 

Yes, we do.

 

So we don’t forget again.

 

 

 

 

23 comments on “The Song Remains the Same

  1. You can tell the guy, Mark really cares, and tries his best to helps these kids out. I feel for people like him and for the kids. And one little thing said, like telling some one they can’t go on the bus ride because they have no money, and then the kid goes off the deep end, can you blame him? That attitude should never be tolerated with these kids. I wish we knew what came of these people and that more specials like Children of Darkness should be made.and shown to educate us all.

  2. I have been following your story for a while now. I feel a special connection with Jani and Bohdi–even though I’m not as visually apparent to have MI, like they have been shown on tv and in your blog here (and youtube videos). Most days…I look and act like the general public. I have a full time job, I go to stores and shop, I drive a car. But when I have my bad days…I get strange looks, I get yelled at and I get constantly asked “what is wrong with you?” It’s well known that I have MI in my family history. One of my grandma’s had a mental illness and I remember hearing at random times that I could have gotten my “strangeness” from her.

    I am rooting for Jani and Bohdi and maybe one day we will meet, and I will get to give them a personal hi-five for being so awesome! I am also rooting for the day that MI isn’t treated like the plague…and that we are embraced rather than locked away…or these days…shot and killed without questioning or getting help first.

    OH yeah…and Michael and Susan…you guys get a hi-five too…for being so awesome. I wish I had more people like you in my life to help me in society…like you guys do for Jani and Bohdi.

    1. Yes, I did find that but it hasn’t been updated since mid-2012. It also makes no mention of the film or anyone in the film.

  3. I’d like to think that times have changed. I hope that treatment centers aren’t using confrontation and screaming. I also wonder what happened to the kids in the movie.

  4. Thank you for sharing this, sadly remarkable how little has changed. Most of the pieces I have seen about the state hospitals concerned people being put there that shouldn’t have been, not the ones who really needed it. The one thing that really stuck out for me was how the quality of the staff makes all the difference. If they care and are dedicated, the child will do much better and be safer. This piece is also a great example of why programs need to be in the family’s community. Kids need that connection to their families and families need to be easily able to monitor what is going on. If you haven’t already, you might look for Mary Maccracken’s books Circle of Children and Lovey and some of Torey Hayden’s books launch as Just Another Kid, ghost girl, Murphy’s Boy etc. these two authors were teachers in the 60s and 70s.

  5. I’m not following what you’re talking about. There is nothing new about mentally ill kids. Who thought that? Children have been in state hospitals since state hospitals have existed. That should be common knowledge for anyone that knows anything about the history of psychiatry. Jani is not unique. What makes her rare is that she was diagnosed with EOS at age six. Most kids diagnosed with it are older. That doesn’t mean that there aren’t other kids like her. There are tens of thousands of them. But compared to other illnesses EOS is rare. It may look very common to you because your world revolves around mental illness but statistically SMI in very young kids is not common.

  6. One more powerful blog Michael.

    I couldn’t agree more: these children, adolescents, adults did not choose to be mentally ill and deserve to be surrounded with love and care. And yes, why in times where professionals are treating illnesses such as cancer, AIDS and MS, … (the list is long there too) mental illness is still so misunderstood and there is still so little real help available?

    How much do we know about our family history in terms of mental illnesses? Two of my brothers commited suicide after they had been fighting against depression, another sibling has been fighting against mental illness for years. My brother and I are also trying to keep ourselves together but never had or even have we heard any mention of there being psychiatric issues with our parents and other family members, even when it is becoming more and more obvious that they are there. My parents once had a happy family with 5 children and saw their world crumble, even if they are still fighting every day now to stay positive and try to hang in there.

    So why do psychiatrists still seem to be unable to really help out the people we love and care for? My 10-year old adopted daughter has been diagnosed with FASD (Fetal Alcohol Spectrum Disorder), resulting in episodes which are similar to many of the images I have seen in the video you shared with us. Every psychiatrist we have visited has advised me to put her into the ‘care’ of a mental institution. I will do everything in my power to prevent that from happening. Giving up is not an option. Thankfully, she is now on medication which seem to help her function somewhat better.

    We should not let it happen that we will be sitting at home watching similar footage in 10, 15, 20 years from now.

    Thank you for your blogs and videos. They are so valuable and necessary: we need to keep advocating for all those who would love nothing else but to be happy, but struggle every day. We cannot foresake them.

    Rita

  7. I am the parent of a son with schizophrenia. He only slept 6 hours out of each 24 and only in small incrments of time as a tiny infant. Full blown schizophrenia hit as he reached puberty. That was 20 years ago. For the past 16 years I’ve worked at the State level to bring the family perspective to policy and program planning. I get to talk with many parents. Sadly I must admit that little has changed since my son became so very ill. I’ve come to the conclusion nothing will change substantially until a state or two has meet with a big class action suit it couldn’t win. When there is no will to genuinely address the needs of these kids then it has to be about the money. Because of the stigma of mental illness parents haven’t come together in enough numbers to do what parents of children with developmental delays did long ago. We are shamed and blamed into silence. And then there is the issue of stamina. When you have to fight so hard to get you child help on top of the extremely difficult life you lead, who has time or energy to go beyond what is needed for your own family? There are no easy answers. Those of us who can must continue to fight for these kids and encourage others to do the same. We must shake off the stigma and do what’s right for kids and society.

  8. I have a very large history of mental illness in my family. My grandfather was manic depressive , mother bipolar, brother diagnosed schizophrenic( committed suicide at 28). My aunt also had numerous “nervous breakdowns”. Both my mother and her sister were subjected to shock treatments. I made a decision not to have children as did my cousin. I will never be able to understand your decision to have another child. Your children are not, as you state, all of ours, not our responsibility. It was a selfish decision and as it turns out disasterous, if your blogs are to be believed. It was really hell for me living in fear of my brother for most of my adolescence. The attacks on me and my parents were violent and quite regular. Im sure he would have killed us all had he lived. You have exposed your son to the worst kind of abuse. I dont admire you or your wife at all.

    1. But he didn’t live. He died by his own hand, which you seem to show no feeling about. I feel sorry for you, but not because you were the victim of his attacks. He is at least free. You are clearly so caught up in your own anger that you can’t even empathize with your brother who took his own life because of a disease he could not control.

      “I’m sure he would have killed us all had he lived.” And what did you do to try and stop that? Or did you just say “Poor me?” I am many things but not a coward. You are. You turned your back on your own blood in his greatest time of need. There is nothing about you to be commended. It is a good thing you didn’t have a child. You lack any empathy at all. You know what they call that?

      Sociopathology.

    2. Thank you. Finally, someone who is speaking sense. Obviously they couldn’t have predicted Jani would have such an enormous problem as they said their family health history was foggy at best. But when you have one child with such a severe condition, and then you go and deliberately have another “fix-it” child is just appalling. I mean even if Bodhi had turned out normal, what kind of psychological damage do you think he would have had to endure if he grew up knowing he was the “fix Jani” child? He could have grown to resent his sister, or to hate her, or to resent his parents. That’s insane. Who’s to say these two parents won’t keep having more mentally ill children, a third and fourth and a fifth to try to keep the first two from killing themselves. This is beyond crazy! Yeah there’s nothing anyone can do about it now, but clearly they can’t be trusted to STOP REPRODUCING.

      1. Who are you and Jeannine to decide which lives are worth existing and which lives are not? These children might be diagnosed with mental health issues, but it is people like you who are actually sick.

        I’d wish myopic and callous people like you didn’t exist, but then I’d be no better than you. Hopefully as your life continues on, you’ll start to understand how disturbed you really are.

  9. Hey… I just saw the specials on your family. I’m sure you get lots of notes whenever they appear on television. Many members of my family (including, if Drs. are to be believed, me) are on the spectrum. Where do they go? We take care of them ourselves, for the most part. The system has failed us for many generations, but the computer era is saving lives, at least in the realm of autism. At least in my particular genetic line, the greatest physical danger is suicide. Digital avenues have given many nonverbal people the ability to communicate on their own terms. The “mental health” establishment tended to shunt us away to institutions, primarily because many of us were / are nonverbal & don’t make much eye contact… which has resulted in people with IQs of 140 – 190 being consigned to warehouses. Fortunately, we have the means & the will to care for our family members. However, our tendency is to withdraw, & the challenge is to promote more neurotypical behavior in order to assimilate into mainstream society. There is very little, if any, outwardly-directed physical violence in our illnesses. I cannot imagine dealing with that level of rage on one hand & fear on the other. It must be terrifying. Although its topic is autism rather than schizophrenia, the documentary “Loving Lampposts” is intriguing. You might relate to aspects of it from a parent’s perspective.

    Obviously there is not a thing on God’s green earth I can do other than empathize & tell you that I care.

    Best wishes always…

    Lefty

  10. Michael, a very touching blog. Thank you. Children of Darkness. I have learned so much. People really need to watch this to be educated.

  11. How can anyone ask you why you had children? Or had another child after Jani? That would make me beyond outrageously mad. These are human beings and your children. It’s like saying why did you allow them to exist?

  12. Thank you for sharing this video. I was unaware of its existence. I teach psychology courses here in Austin at a community college and I plan on showing this to them when we discuss mental health treatment. Unfortunately not much has changed since this film, just the labels. It’s incredibly frustrating.

    1. I work for my State’s Children’s Mental Health Division. I have a team of 20 parents of children with serious mental health disorders. We deliver an 8 hour training to professionals on the struggles to raise one or more children with these challenges. When they understand what life is like for the family they can do a much better job of delivering services and supporting families. Professionals tell us it’s making a big difference in how they work. Showing films like this family’s journey is very helpful. You might consider bringing in a few been-there, done-that parents to share their experiences. Education is so important and not all of it is available in a book.

  13. Children of Darkness, I just saw that this past weekend. The Elan school just blew me away. I also recently read Annie’s Ghost about a women put in an institution in 1940 because she has an artificial leg and became very distraught after being raped. I don’t have any answers either, just happy eugenics isn’t in full swing, my grandmother had schizophrenia and I wouldn’t have been here….

  14. Pingback: Welfare Check | Jani Foundation

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