The Crystal Ball She Wished She’d Had

I read the comments on an article at ABC News called 5 Disturbing Things We Learned Today About Sandy Hook Shooter Adam Lanza and it’s very clear that most people think that those of us who have loved ones with serious mental illness should a) understand the depth and severity of their illness in all ways, at all times; b) deliver appropriate treatment in all ways and at all times; and c) basically read their minds and use our handy dandy crystal balls (they give us those at diagnosis, you know, so we will always be aware when someone in our family is going to do something unimaginable) to predict all possible behaviors so as to protect others from our “psycho” family members.

I read the comments on an article at ABC News called 5 Disturbing Things We Learned Today About Sandy Hook Shooter Adam Lanza and it’s very clear that most people think that those of us who have loved ones with serious mental illness should a) understand the depth and severity of their illness in all ways, at all times; b) deliver appropriate treatment in all ways and at all times; and c) basically read their minds and use our handy dandy crystal balls (they give us those at diagnosis, you know, so we will always be aware when someone in our family is going to do something unimaginable) to predict all possible behaviors so as to protect others from our “psycho” family members.

Naturally (because we live in the good old USA), we should do this on our own, in the privacy of our homes, with little or no help from our communities.

Good to know.

The consensus seems to be that Nancy Lanza is 100% responsible for what Adam Lanza did and not only did she deserve to die, but we should probably exhume her body and beat the crap out of her regularly. I mean, holy crap, I can Monday morning quarterback like anyone else, and some of Adam’s parents’ mistakes are pretty clear from where I sit (you couldn’t pay me enough to keep a gun in my house). But when you’re *in* a volatile situation, and you’re trying to make everything OK, and you’re trying to live life, and you’ve been to the ER and the doctor and you’ve called the police and you’ve dealt with the system and you’ve been blown off over and over and over again (usually without any hint of kindness) and the school won’t help and they call CPS on you and you know you’re all alone in the world, the fuck do people expect parents to do? I’ve heard it’s not cool to lock volatile and difficult children in the basement so hey, how about we quit flogging this mother and maybe create some solutions? Maybe, I dunno, improve the way we treat families with challenged children? Meet us at the ER with caring and treatment instead of reports to CPS? Stop telling us we caused it with our shitty parenting? Shorten some of those damn waiting lists so when we’re in crisis, we don’t have to wait weeks or months for help? Because this has been a banner week in my Facebook timeline as far as parents begging for treatment for their kids (a day in the ER with no help here, a call to the police who declined to help with a violent child there, three CPS reports, and of course the relentless drumbeat of schools that will NOT follow BIPs and IEPs as they were written) and really, we can’t have it both ways. We can’t vilify these parents AND expect them to make everything OK on their own.

People who feel all-powerful as parents have never been up against shit like this. I promise. With the weight of my own experience and my dozens of friends who are parenting kids with MI, I tell you, we cannot handle this on our own. Please stop asking to do magic.

I have no idea what Adam Lanza needed, and I have no idea if his parents were in some kind of denial about his issues. I have a pretty damn good idea, though, that even they knew what he needed and tried to get it, it didn’t exist.

So hey, crucify Adam Lanza and his parents if that helps you sleep at night, but the fact is that if your brain or that of someone you love goes kerflonk, you might meet our mental health care system up close and personal, and you might find out that it’s not a system at all. You might find out that banging on doors year after year after year makes a person pretty tired, and advocating for someone, no matter how much you love them, can defeat you. I hope you don’t find out, but you might. And then you’ll be stranded here with the rest of us, without crystal balls, without magic wands, without super powers of any kind. You would just be an ordinary person doing the best you can in extraordinary circumstances, and like ordinary people do, you might fuck it up completely.

Because you know what? Flawed, ordinary people screw up, and if there’s no one there to catch your mistake, something terrible could happen. Something so awful, people will flog you after your death. And to think, once upon a time, Nancy Lanza was a young woman in love, and she wanted to have a baby. She did her best by that baby, and it wasn’t nearly good enough.

And look at the cost. Look how high the price, for leaving her (and millions like her) alone, and for preserving our right to own weapons. The cost is incalculable. Unimaginable. Inconceivable. It doesn’t have to be this way, and yet this is the way we have decided it will be. I hope we change our minds very soon because there’s not a damn thing in the world that justifies the circumstances that lead to rooms full of dead children.

The Trajectory

When you take a child to the doctor, you are a fallible human presenting a fallible human to a fallible human.

When you take a baby or child to the doctor, that doctor looks at your child in light of whatever you, the parent, claim as the problem. The doctor a) dismisses you with admonishments to relax; b) makes a diagnosis and treats your child; or c) refers you to a specialist.

You, the parent, will a) accept your admonishment and watchfully wait while trying to relax; b) go to another doctor; c) administer the prescribed treatment;  d) see the specialist; or e) some combination of the above.

When you see the specialist, that doctor will look at your child in light of whatever you, the parent, claim as the problem, plus whatever his or her specialty is, plus whatever notes she or he has received from the referring physician.

Meanwhile, your child has whatever problem your child has, and if that child has a complex problem, you may or may not be highlighting the right symptoms, and you may or may not be seeing the right doctors, and you may or may not be administering the right treatments. If the problems your child has are not the kind that can be easily measured, you may feel like you’re throwing money, time, and drugs at the problem, fingers crossed.

It doesn’t feel particularly scientific, in spite of the prominently displayed and very impressive degrees covering one wall of every office you visit. It feels a little like faith, and you may think, I already have a pastor and a God; what I really need here for my child is evidence-based everything.

And of course you’ve chosen carefully, and it’s all evidence-based and those degrees represent years of education and training. These people know their stuff and they’re delivering the best care.

Except it’s all based on what you, the parent, claimed (way back then, in the beginning) as the problem, which set you all (the child, the parents, the doctors and therapists and teachers) on a trajectory. The doctors are not puppets; they see your child. They assess and draw their own conclusions and make diagnoses of their own.

Except you will always be the person who identified point A, and what if you chose the wrong point A? Or the point A that was only partly correct? Or what if you identified 3, or nine, or thirty point As, and the doctor du jour chose what he or she saw as the most salient (interesting, urgent, plausible, treatable) point A and the rest of it got filed away for later and in the rush and press of appointments, treatments, and life, you got tired and started following doctors instead of collaborating with them?

What if, in a moment of clarity and energy,  you identified some lost point As and asked for the tests to investigate them?

And what if, when those tests came back, you saw, in black words on white paper, a problem that, had you highlighted it from the beginning, might have made everything very different?

It is possible that, on reading such a report, you might write some words in second person (even though you hate when people write in second person) because you need some distance from the enormous potential reality the report represents. It is also possible that you have such a mingled mash of thoughts and feelings that you have yet to make sense of them, even two months after you first read the report.

When you take a child to the doctor, you are a fallible human presenting a fallible human to a fallible human. And doesn’t that just suck sometimes.

For Kelly Thomas

Kelly Thomas was beat and beat and beat by Fullerton police officers on July 5, 2011 and while the cops beat him he cried for his dad and God and his mom and they beat him some more until he stopped moving.

I’m compelled to put some words here in honor of Kelly Thomas, some kind of expression of solidarity with his family. I want to express my outrage at yesterday’s acquittal of the men who murdered him, but my feelings are big and language seems too small. I went to sleep last night thinking of the Thomas family, woke up this morning thinking of him and praying a prayer about the men who killed Kelly that I’m pretty sure God doesn’t honor.

So I will tell you this small sliver, this little piece, and it is this: Kelly Thomas is Kelly Thomas. He is described in the news as a homeless man or a mentally ill man or a man with schizophrenia. Those things, those descriptors, are all true, but Kelly Thomas was Kelly Thomas and he was a person and he was beloved of his family and those things are also true.

The surveillance video shows that Kelly Thomas was beat and beat and beat by Fullerton police officers on July 5, 2011 and while the cops beat him he cried for his dad and God and his mom and they beat him some more until he stopped moving. When Kelly was finally unconscious, lying on the hot pavement, handcuffed, his blood pooling around him, the police officers began the anxious process of creating a suitable narrative. “He was really fighting,” one says. “He was definitely on something,” says another. Yes, yes, true. A person in the process of being beaten to death will fight. Terror is a powerful drug.

And they—those police officers, all six of them who got on top of, beat, pistol whipped, tased, and ultimately murdered a terrified, unarmed man—slept in their beds last night. They kissed their children goodnight.

The last time Ron and Cathy Thomas kissed their son goodnight was July 10, 2011, when they removed him from life support.

Think about that, because I can’t stop thinking about it: their babylove, the child for whom Cathy and Ron Thomas stayed up too late on Christmas Eve wrapping presents, and who they taught to ride a bike, who they took to the doctor when he had an earache and later, when he had other, more mysterious symptoms, and they fought and struggled and loved and tried to rescue him when schizophrenia grabbed him and wrestled him away from them and it was they who had to make the choice. It was they who signed the papers that authorized the hospital to turn off the machines. Mom and Dad, who couldn’t protect their son, who will live with the image of his devastated and dying body forever. They, who sat in the courtroom every day, listened to the audio of their son crying out for them, and finally listened to the acquittal of the men who hurt him unto death.

I kissed my own son goodnight, too. My little boy, who is terrified of anyone he doesn’t know touching him, who sometimes acts in inexplicable and frightening ways, who often doesn’t understand what is happening around him. My boy, whose illness sometimes makes him seem weird and unlikeable…how, how, how to make the world understand that he is my beloved son? That we, the parents, siblings, spouses, children, and friends of people with mental illness know them to be people? They are not the monsters in the movies or the villains in TV shows or amusing pop-culture characters but people.

Kelly Thomas was not disposable. He deserved so much better. His family deserved better, and all of us who live with or love someone with severe mental illness deserve better.

There are no disposable people, but we sure as hell act as if there are.

Please visit this link to sign a petition to the federal government, requesting they investigate the death of Kelly Thomas.

Issy and Kelli Stapleton: Murder, Suicide, and Family

I have been deeply disturbed for weeks. I keep trying to write this blog post and backing away from it, over and over. I have decided not to publish it, and alternately been compelled to publish it. Ultimately, this is my truth. This is what my family survived, and if it was the reality for my family, then it’s the reality for other families because we aren’t unique. But back up; this doesn’t begin with me, but with another family.

The facts of the story: On September 3, 2013, Kelli Stapleton published a blog post in which she described an IEP meeting that ended with the district school refusing to provide services for Issy, Kelli’s 14-year-old autistic daughter. Issy had just been discharged from an inpatient treatment program in Kalamazoo, MI (three hours from the Stapleton home) where she was being treated for, among other things, aggressive behavior related to her autism. While at her inpatient program, Issy had developed a good relationship with a teacher in the junior high she attended while she was in treatment. Kelli and her husband, Matt, decided that Kelli and Issy would move to Kalamazoo so Issy could attend school there and Matt and the couple’s other two children would remain at home.

Later that same day, police found Kelli and Issy in the family’s van in a rural area near their home, both unconscious, during an apparent attempt by Kelli to end both their lives. Issy spent about a week in the hospital and is now recovering at home. Kelli is being held without bond on a felony attempted murder charge.

Kelli’s act set off a virtual bomb in the special needs/disability blogosphere, and especially in the autism world. I will not guess at Kelli’s motives for trying to kill herself and her daughter (we will only know her motives if and when she tells us), but I do know how I got to the edge of the cliff that Kelli went over.

I have been consumed by what Kelli did since I heard the news. Part of that is because I know Kelli and part is because I have been close to doing what she did. Since the news broke, the cry that has gone up from autistics and people with other disabilities is, we have been dehumanized. We are not considered valuable or worthy of consideration, kindness, freedom, or even our very lives.

That is true. Our culture as a whole, and we as individuals, have not honored every person as we should. We have hurt, isolated, ostracized, assaulted, sterilized, tortured, and killed people we don’t understand. We have deemed those who seem different less worthy, and often we have done the hurting in the name of helping, calling it therapy, treatment, or religion. If you or someone you love have been on the whip-crack end of that terrible phenomenon, I am sorry. You deserve better. You deserve all good things, all the support and kindness and love that this world and the family of humanity has to offer. The people who hurt you were wrong. If they had good intentions but hurt you anyway, they were wrong. If they loved you but hurt you anyway, they were wrong.

All that said (and all that true), there is a complexity that we’re losing by insisting that a discussion of what may have caused Kelli to do what she did (or that any discussion of why so many caregivers kill or attempt to kill the disabled people in their care) is necessarily devaluing Issy and other victims. Condemning Kelli will not stop the next desperate parent from taking a similar action, and in fact may prevent people from reaching out when they are in danger.

Kelli and Issy were (and are) victims of the same system, and that system made them victims of each other. When we, the ground-level stakeholders (people with disabilities, caregivers, and people who would like the world to be more just), focus on the ways Kelli and Issy victimized each other, we let all the other people off the hook. When we vilify Kelli, or autism, or the various therapies (on which I am no expert, since my disabled child has serious mental illness, not autism), we don’t scrutinize all the people who hold the power and the pursestrings.

Think in terms of power and investment. Kelli and Issy and the rest of the family were relatively powerless. Therapies, education, and help for Issy would only come via the bureaucracies that hold the purse strings, as they do for most of us who don’t have a few million dollars at our disposal. So let’s say the Stapleton family needed a level of help we’ll call X. That X represents the amount of help that enables the family to have a life that is life. Issy goes to school all day and there is adequate care there for her to be safe, healthy, and to learn as much as she can. There is enough help in the evenings and on weekends so that the other Stapleton children can have the attention of their parents, help with homework, family meals together, and regular outings. The Stapleton parents have the space they need to nurture their relationship and their individual interests. Issy has all the appropriate therapies that her team parents, teachers, and other care providers agree she needs, and her parents and siblings have therapists, too. There is so much help that the parents are not overwhelmed and the children are not afraid.

The Stapleton parents are completely invested in the family getting help level X. Their desire is for a life that resembles normal family life as much as possible. I’m making that assumption, of course, but it’s based on what I want for my own family so it’s not a big stretch.

What are the chances that they will get help level X? In my experience, nearly zero. I know dozens of families in which there are children with extraordinary needs, and the amount of help they get is always X minus at least half.

In late 2009, I had begun to consider that suicide was reasonable, as was ending the life of my mentally ill son, Carter, then 7 years old. There was no hate in me for Carter; in fact, it seemed to me that ending our lives was the only loving thing I could do. When I read of people condemning Kelli’s actions, saying that autism or disability is no excuse for murder, I am perplexed because I wasn’t looking for an excuse to kill my son; I was looking for an excuse not to. I believed that ending our lives was the only loving response to my son’s illness and suffering that was available to me.

(Pause. Breathe. We are all well now, and very safe.)

I’m not a stupid person, nor am I in general delusional, but when I lived with unrelenting and profound stress, fear, grief, and anger, coupled with severe sleep deficit, I changed. I watched the light go out in my other children’s eyes, watched my husband descend into periodic despair, and that changed me. Some people told me I was overreacting and others told me I was a saint, an angel, and a hero, and that changed me too.

Everything about Brian’s and my lives was shredded in the early years of Carter’s life. All the things we did that gave our lives meaning and joy were gone: church, prayer, sex, family relationships, play, conversation, reading, walking, writing. All the things we did that made our lives work were destroyed, or minimized to the point of dysfunction: maintaining our home, maintaining our yard, keeping up with the laundry, preparing meals, shopping. Those things that kept us feeling good about ourselves disappeared: hobbies, friendships, art, routine medical and dental care, taking care of our personal appearance, even hygiene, and of course sleep. We slept so little for so long, I’m not sure how we functioned at all.

I’m not talking about things that we experienced occasionally, or sometimes, or during the day, or for a few weeks here and a few weeks there. I’m talking about every minute, day and night, for months and years. We know that war and poverty change the structure and function of the brain; it’s not a stretch to assume that living with unrelenting and profound stress at home can do the same. And just as some infants come out of their painful early years in Russian or Bosnian orphanages just fine, and some come out deeply damaged, parents come to special needs parenting with our own strengths and weaknesses. Some of us will bounce, and some of us will eventually shatter.

In the midst of the chaos of our home life,  we were condemned and criticized everywhere. I was patted on the head (once literally) and called a worried mom (many times, in many ways) when I told doctor after doctor after doctor that my child did not sleep, could not laugh, smashed his own face into the floor, and was not happy. I spent hours on the phone with the insurance company and got very little in return for my efforts because we just don’t cover developmental delay. I heard the questions again and again, searching for how Carter’s problems were my fault: did you take medicine, what do you feed him, were your other kids this way? I saw the nasty looks and heard the foul words from people at the grocery, the post office, and restaurants. We called for help and were added to waiting lists for tests, waiting lists for appointments, waiting lists for services.

I begged for help and heard, in a million ways and on a thousand days, no, we can’t help you. There’s nothing to be done. Go home. Deal with it.

I never devalued my son’s life. Our culture, society, and systems did that. When I waited on the playground for the kindergarten bell to ring and none of the other parents would talk to me because my son was “that boy,” the one who attacked other kids, couldn’t sit still, and occupied all of the class aide’s time and attention, I felt that shame, but it wasn’t mine. That shame belonged elsewhere—with  the principal, lawmakers, and supervisors who refused to provide appropriate placement. They devalued my son and my family. Doctors who saw me, frantic and pleading, for a standard 5-minute visit, and handed me a book about sleep instead of sitting and hearing me and working with me to find a solution—they devalued my son, my family, and me, but I felt the shame.

In the midst of all of that, with my life swirling in pieces around me, the dominant emotion was sorrow. My little boy was in agony. He was afraid, sick, psychotic, depressed, aggressive, suicidal, manic, and miserable. Even the most basic pleasures of life, a good night’s sleep or an easy poop, were denied him. I would have happily chewed off my arms if that would have eased any portion of his pain. I have held him through thousands of hours of sleepless anguish, pulled him back from the brink of his own attempts to hurt himself or end his own life, and watched a million hurts chip away at his heart. I would have done anything to fix it. I did everything I knew to do, and still, he suffered.

We lived like that for eight years. It changed me. It very nearly broke me. I didn’t get to the place where suicide and murder seemed like appropriate actions because I was selfish. I didn’t get there because of hate or even anger. The world was hopelessly dark, help far too scarce, and the shame too large. Most of all, the agony seemed endless, limitless. I have read over and over in the weeks since Kelli Stapleton tried to kill herself and her daughter, “A mother should protect her child!” Sometimes, I couldn’t see any way to protect Carter except to take him home to Jesus.

We have enough help now. Carter isn’t nearly as sick as he was, and my husband and I have more ability as caregivers than we used to. We survived long enough to get to the tops of some waiting lists, and we finally gained access to an excellent pediatric psychiatrist, a therapist, and a behavioral management specialist. We found a parent support group and a wonderful school that my parents have paid for. We began the process of turning our lives around, and while it hasn’t gotten easy, it has gotten manageable. There is joy again. My gratitude for Carter’s relative health and my family’s improvement runs deep like a river, but many families don’t get to experience the relief we have enjoyed in the past few years.

Violence perpetrated upon people with disabilities is a dark and ugly part of the human story, but I refuse to believe that we’re not capable of thinking around the corner and separating the cruel perpetrators from the desperate ones. Issy, Kelli, and the whole Stapleton family were left twisting in the wind. They had services, but they weren’t enough. When someone in a family is repeatedly aggressive, that means that family needs more help. When people in a family are repeatedly seen in the hospital for injuries sustained at the hands of a family member (Kelli sustained brain injuries when she was attacked by Issy), that family needs more help. When people are being bitten, scratched, and punched; when people are not able to stop biting, scratching and punching; when some children are hiding in closets dialing 911 (as one Stapleton child is said to have done); that family needs more help.

Silence and condemnation are not the solutions to those problems. The only solution to the problem of not enough help is more help.

We need a serious cultural shift in the way we think about family and caregiving in general, and caring for people with disabilities specifically. Even in the worst times, I was not a cruel or bad mom who hated my child; I was a desperate and isolated mom of a very sick child who I loved. We have to speak the truth, listen to each other, and insist that we all deserve better.

The NM Mental Health Care Audit: Out of the Frying Pan

The state of NM has yanked Medicaid and Medicare funding from fifteen agencies that provide mental health care services all across New Mexico. This represents 30,000 patients, many of them children, some of them the very sickest of the population of people with psychiatric illness.

I don’t use the word “yanked” accidentally or lightly. There was no warning; not for patients, not for providers, and not even for the administration and management of these agencies. The NM state government announced in June that it would halt funding to the agencies and hand over their administration to five Arizona agencies.

We’re flying our flag upside down. We’re on our knees, begging someone in power to come and save us. Our newspapers and media outlets, from Albuquerque to Taos to tiny Quay, NM, are suing our government, trying to force them to offer some transparency, some little hint of what has happened and where we’re going, and they are silent. New Mexico, like every state in the US, has its own auditor, but NM contracted with a Boston company to conduct the audit at a cost of $3.2 million. Why? We’ve heard no reports of corruption in the auditor’s office, so why did they do that? Were we just in the mood to send a whole lot of our money to Boston and Arizona and we needed to find a way to do that? Because for all the information we’ve been given, that makes about as much sense as anything.

The line we have heard again and again from the NM Human Services Department (HSD) has been that there will be no disruption of services. Even as the stories have begun to circulate indicating that the transition of management has been anything but smooth (and in some communities and families it has been disastrous), HSD has continued to assure us that all is well. Everything is fine.

I was on a conference call last week that was advertised as a “listening call” so that HSD and representatives of the Arizona agencies could hear consumer concerns. My alarm bells sounded right away, because contrary to the commonly held conception of people with mental illness, many patients do have jobs, and the meeting was held from 1:30 pm to 3:00 pm on a weekday, so that cuts one significant population of consumers out immediately. Next, the call was conducted in English, with no plans to conduct another meeting in Spanish or Navajo or with translation services available for speakers of other languages, removing many more people from potential participation. The announcement about the meeting went out via email, cutting out the many people in our state who don’t have access to a computer, and the fact that a phone was required for participation again removed a large group of people. Finally, many people who are very seriously ill just can’t. To expect a person with severe thought or mood disorder that isn’t under control to participate in such a call is laughable.

But maybe that’s part of how such a terrible thing is happening: its victims are a population that is less able to advocate for itself than many others.

To be blunt: everything is not fine, and every word spoken on that “listening” conference call by anyone who isn’t paid by HSD made that clear. There are children who are not in school because agencies that provided behavioral management services to children so they could attend school (commonly known as 1:1 services, and provided via Medicaid instead of the public schools in NM) don’t have them. There are families whose children are in foster care who can’t do the items on their family action plans because there are no providers to oversee and provide for those plans. The overflow from the agencies that are part of the audit is creating profound pressure on other agencies that receive public funding, so that service is reduced for nearly everyone across the state.

For perspective: I wrote A Dislocation of Mind, about the many weeks it took to get my daughter some psychiatric care in this state, over three months before the audit started. It’s not like the situation in mental health care and addiction treatment was good before this started; we’ve gone from abysmal to catastrophic. What I have detailed here are just a few hints to the horror that the audit is for the people on the ground: the patients and providers who live with the reality of mental illness and addiction every day of the year.

And yet, with all this, we’re having a very hard time getting any attention to this crisis. My friends, I’m asking you, please, if you live in NM, write to the governor and all our legislators and to HSD and insist that they put patients first. If there is money missing, certainly we need to find out where it went and what happened, but not at the expense of people who are sick. (By the way, does it seem unlikely to you that there is vast wrongdoing in mental health care but all the agencies that deal with broken bones, skin cancer, and the flu are pure as the driven snow? Yeah, me too.) The NM congressional delegation has asked US HHS Secretary Kathleen Sebelius to set up a public forum, but no date for that has been announced.

If you’re not in NM, please send a note to anyone you know in national media. No one seems to be all that interested, and I am no cynic, but it’s hard not to think that few people care because people with mental illness are a little weird and scary and not always likable (Just like the rest of us, but don’t people with mental illness make the handiest scapegoats?). We need the federal government to pay some attention to us, and my fingers and those of my advocate friends are about raw with all the letter writing.

Watch this.

Read this.

Watch this space for links to a radio series on the audit, which will include part of an interview I did with Tristan Ahtone, the public health reporter at Fronteras. If you’re in NM, you can listen to it on KUNM tomorrow during Morning Edition in the am and All Things Considered in the pm, or you can stream it if you’re not in NM.