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.

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.

Frustratinger and Frustratinger

Avert your eyes, ye Puritans. Yea verily, I am going to curse. Also there is talk of boners here. You are warned.

I fucking HATE insurance companies. Fucking hate them. The only thing I hate more than insurance companies is the health savings account, which is a great idea and saves us lots of money in taxes but is the most confusing, arbitrary, fucked up thing EVER. I mean, Brian and I went to college. We are not stupid people, but between the insurance policy and the HSA rules, you’d think we were trying to understand string theory instead of some very ordinary programs that millions of people depend on.

Carter needed some dental work. Carter being Carter, he needed the Super Ultra Deluxe sedation (can I hear an amen from the DD/MI parents?). Alternatively, we could have brought in a large team of heartless people to lay over him while he screamed and fought, but all in all, the drugs seemed kinder. Plus, I assume the heartless people would have cost even more than the drugs since I don’t know any people like that and I would have had to hire them.

The insurance won’t pay for the drugs. Yeah, fine, whatever. I get that they don’t give a shit about the teeth in my kid’s head and they care even less if the whole event is profoundly traumatic for him. No skin off their noses if he can’t eat solid foods or sits in a corner, rocking and sucking his thumb, forever. So I paid for the sedation with our health savings account because a) it is a health expense and b) the drugs were prescribed by a licensed provider. This, in general, is how the HSA works.

But oh, never mind. It doesn’t qualify. You want Lasik because you’re annoyed with glasses? Your insurance won’t cover it, but you can pay with your HSA. You want boner pills because you can’t get it up? Your insurance might pay for that, but even if it won’t, you can pay with your HSA. But if my kid needs his teeth fixed and his developmental issues make that intolerable for him without drugs? Tough shit. Pay your $400 and shut up. And it’s not even like I’m asking for someone else to pay; it’s our money and they just make the rules so it’s halfway to impossible to use it!

And the thing that makes it all that much more insulting is, WHY is $400 a problematic amount of money for us? Because the kid who needed the dental work which he could not tolerate without the drugs can also not tolerate daycare, so I don’t have a fucking job, that’s why. We have enough money to meet all our needs, including our medical needs, if we can meet those needs with the money we already set aside (and holy wow; between the premiums, the HSA, and the other expenses, it is a  shit ton of money). But no, the people who make the rules are holding the money hostage and defining dental sedation as unnecessary. Much as I understand the desire for oneself or one’s partner to achieve a great boner, healthy teeth seem more important, but what the hell do I know? Rich men need their penis pills and little kids whose moms don’t have jobs will just have to learn to live on applesauce and mashed bananas.

Many days, it feels something like this:

Dear People with Disabilities and Caregivers of People with Disabilities,

Go to hell. (Unless we need you for momentary inspiration.)

We will take almost every available opportunity to screw you. (Unless featuring you on our poster will get us goodwill points.)

Come to us for help! (We put this on billboards and websites to give people the illusion that there really is help to be had.)

Signed,
The People Who Make the Rules and Keep the Money and Don’t Care One Bit If You Die

I know this is not a big problem in the grand scheme. It’s just frustrating as a motherfucker, and it’s cumulative. $400 here, denied OT there, another waiting list (I keep a LIST of the waiting lists we’re on), and it all builds up until I feel like we’re living in a spiral of doom, never really getting anywhere, fighting the same battle over and over and over. The battle always comes down to the same question: does Carter matter? Is he worth it? The answer I hear back is so often, “No, he’s not. He doesn’t matter. Your family doesn’t matter,” that I find myself struggling to resist the temptation of bitterness. I will resist the temptation because the last thing humanity needs is another bitter person, but damn.

 

Inarticulate Screaming

In recent lawsuits, mental health care in prisons in four US states was described variously as “clearly inadequate,” “[not] even rudimentary,” and “grossly inadequate.”

At The Atlantic, writer Andrew Cohen visits (as he has so often in the past) the state of the lives of people with mental illness in the US prison system. In his piece One of the Darkest Periods in the History of American Prisons, published yesterday, Cohen describes four lawsuits filed in the past 3 weeks against prisons in 4 US states: Florida, Mississippi, Pennsylvania, and Louisiana.

I would tell you how I feel when I read Andrew Cohen’s pieces about what life is like for incarcerated people with mental illness, but how do I communicate inarticulate terrified screaming via text on a screen?

The actions and neglect alleged by the lawsuits are almost too terrible to comprehend, and in some cases would be sufficient to cause thought and mood disturbance in most mentally and emotionally stable adults. They cite cases of abuse of solitary confinement for months or years at a time; lack of protection from violence, particularly sexual assault; and excessive force by prison guards.

Mental health care in the prisons was described variously as “clearly inadequate,” “[not] even rudimentary,” and “grossly inadequate.” In discussing the ways in which the abuse of solitary confinement and inadequate staff  make a horrific situation for mentally ill inmates even more dire, Cohen writes:

The federal report [filed by the Civil Rights Division of the Justice Department] describes a prison [in Pennsylvania] in which mentally ill prisoners are locked away so thoroughly that what few mental health professionals are available are unlikely to see the very inmates who need the most care. And what are such rare visits like when they occur? “Cell-side visits at Cresson [Prison] involve mental health staff standing outside prisoner cell[s] attempting to speak to the prisoners through cracks in door frames or food tray slots, amid the commotion of the unit.”

The results of these living conditions and inadequate (or absent) health care are predictable: suicide attempts and suicide completions; self-harm; homicide; decompensation. Cohen describes inmates with profound mental illness who have lived without treatment for years, even decades, and who will soon be eligible for release. Mental illnesses are not static. In most cases, they are progressive without appropriate treatment. When we lock sick people up, if we don’t treat them, we release much sicker people two or 10 or 30 years later.

And yet…did you know? Are you aware? The largest mental health care provider in the US is the LA County Jail. There is so little care available for people with mental illness that, ultimately, they get care (or not) in a a jail or prison, if they survive that long. If psychiatric care is not available in our communities, on our street corners, next to the offices where we have our kids immunized and our bronchitis diagnosed, if there are no beds in the hospitals for people facing serious psychiatric illness, do we assume those very sick people will all go home and be sick where we will not see them? Or see the error of their ways and just quit being sick?

Of course, many will go away. Some will take their own lives and we can comfortably view those deaths as family tragedies rather than the social failures many of them are; some will live life on the streets or in shelters as triple victims of their illnesses, the system, and the violence that is so prevalent on the streets; and some portion of people will become so ill, or have so many other confounding factors (cognitive impairment, little or no family support, homelessness, bad luck) that they will enter the criminal justice system.

Once they are locked up, we might treat them better than the abandoned pets in animal control shelters all over the country, but we might not. It depends on where an inmate is, and what his or her state has invested in treatment for prisoners, and a thousand other variables, down to whether or not the guard in charge of a prisoner on any given night “believes in” mental illness.

This is why, among the predictable bogeymen living under my bed—the possible horrors Carter may experience, from the likely to the remotely possible—incarceration is among those with the biggest, ugliest teeth. Sadly, the deck is stacked against him. His illness disturbs and distorts his thinking, makes him paranoid, aggressive, and sometimes seriously (frighteningly) weird. For now, I can compel him to accept treatment (and he wants that treatment), but the storms of adolescence and early adulthood are coming. For too many people with serious mental illness, normal teenage rebellion becomes treatment refusal, a “right” that we protect, which leads to more serious illness, which leads to the cycle of incarceration-shelter-streets-incarceration that is the undoing, and often the end, of far too many seriously mentally ill people.

You will never hear me make the argument that mental illness excuses any crime, but you will also never hear me make the argument that we do not hold in our collective hands a duty to care. We have a duty to see our incarcerated citizens as human beings, not necessarily because they always act like humans (I am not so idealistic that I don’t know the horrors people sometimes visit on each other.) but because we are.

National Children’s Mental Health Awareness Day: If the Diagnosis Was Cancer…

If the diagnosis was cancer instead of mental illness, my child would be treated with sympathy instead of judgment.

Today is National Children’s Mental Health Awareness Day, and though I’m hard at work on something else, I didn’t want this day to go by without posting a few words in honor of the occasion. I wrote this piece a couple of years ago and it is no less true now than it was then. Severe mental illness is devastating. It places crushing burdens (financial, emotional, spiritual, relational) on families, just like other serious and life-threatening illnesses do. Shouldn’t we, as neighbors, friends, family, and society, treat illness that originates in the brain with all the sensitivity with which we treat illness that comes from other parts of the body? Shouldn’t we spend money on treatment and research for brain-based illness at the same rate we spend money on other illnesses?

If the diagnosis was cancer instead of a mental illness:

No one would tell me I could control my child’s symptoms with harsh discipline.

People wouldn’t say I’m “making” him sick because I somehow, perversely, need that.

There would be enough doctors to meet his needs.*

We would never wait weeks or months for life-saving therapies.

People would not tell me that I’m lucky because my child doesn’t have some other, equally life-threatening illness.

No one would deny that my child’s illness exists.

If my child required emergency hospitalization, he would not be turned away because of a bed shortage.

I would be allowed to give my child food and drinks (if medically safe to do so) while we waited in the ER.

If my child was hospitalized, he would never be locked up, alone because of his symptoms.

While in the hospital, I would be welcome (and even expected) to stay with him all the time, even overnight.

People would not tell me that my failures as a parent were the cause of my child’s illness.

I would be treated with sympathy instead of judgment.

My child would be treated with sympathy instead of judgment.

People would not question my motives for seeking treatment. They would accept that I want to keep my child alive.

I would not have to search carefully for a pharmacist who would dispense life-saving medications without making suspicious faces and doubtful comments about their necessity.

People would accept that, while my child’s medication regimen carries significant risks, the risks of the illness are even worse.

Drug manufacturers would have done research on my child’s medication in pediatric populations so that the doctor and I have the information we need to minimize risks.

If my child was symptomatic during school, he would not be punished for those symptoms or told to stop it right this minute!

If other children made jokes about my son’s symptoms, their parents would tell them to stop.

Other parents would not make jokes about my child’s illness.

No one would insist that television/movies/video games caused my child’s illness.

My child would go to the hospital that has fresh paint, adequate equipment, and up-to-date playrooms.**

No one would say the name of my child’s illness while making air-quotes.

No one would insist that my child needs an exorcism.

People would not scoff at the possibility that my child could die of his illness.

*Not true everywhere, but I don’t know of a single community in the US that isn’t experiencing a shortage a psychiatrists, and especially pediatric psychiatrists. 

**Again, not true everywhere, I know, but here, the “regular” hospitals are bright and cheery while the psychiatric hospitals are ugly and depressing and the staff must become masters of making-do with inadequate everything.

A Dislocation of Mind

Right now, millions of people in the US cannot access needed mental health care. My daughter is one of those people, and her life is at risk.

My 17 year old daughter, Abbie, broke her leg the other day; a bad break in her femur. She was in terrible pain, begging me to make it stop, to help her feel better, so I took her to the emergency room. We went there, and we waited for 6 hours, and finally a Bone Health Specialist came and told us that we should go home and make an appointment to see an orthopedist.

“I can’t take her home like this!” I said. “She’s in too much pain, and she can’t walk! Can she at least have some medicine for the pain?”

The Bone Health Specialist was aghast. “A doctor can’t prescribe medicine without seeing the patient. That would be unethical!”

I brought Abbie home and made her as comfortable as I could before I got on the phone. I called every orthopedist whose number I could find. Many of them didn’t return my calls, and of those that did, more than half told me that they were not accepting new patients, and the few who I spoke to who were accepting new patients made appointments 4-6 weeks in the future or put her on waiting lists that were months long.

*          *          *

Oh, wait, no, sorry. I got a little confused for a second there. Actually, I took Abbie to the ER for an asthma attack. She was terrified, begging me to help her breathe, so I took her in hopes of getting her some relief and making sure she didn’t die. We went there, and we waited for 6 hours, and finally a Breathing Specialist came and told us we should go home and make an appointment to see a pulmonologist.

“I can’t take her home like this!” I said. “She can barely breathe, and she could die! Can she at least have a nebulizer treatment?”

The Breathing the Air Specialist was aghast. “A doctor can’t prescribe medicine without seeing the patient. That would be unethical!”

I brought Abbie home and gave her every kind of over-the-counter medicine I could think of to help her breathe better before I got on the phone……

*          *          *

Oops, no, wait, it was diabetic shock, and after we waited we saw a Blood Sugar and Insulin Specialist who told us to go home and make an appointment with an endocrinologist……

*          *          *

Gosh, sorry, I just don’t know where my head is. I took her to the ER because she was in a car accident and she was unconscious from head trauma, and after we waited we saw a Consciousness Restoration Specialist who told us to go home and make an appointment with a trauma surgeon……

*          *          *

Or wait, no, I did take my daughter to the ER, and we did wait for hours, but what was really wrong was depression. She felt suicidal. I had already called more than 30 psychiatrists by the time we went, and had already discovered that I could not get her an appointment in a reasonable amount of time. 6 weeks, 2 months, 3 months, we’ll add you to the waiting list…and in the meantime my daughter begged, “Please, Mom, can’t you make it stop? I just want it to stop!”

It is always awful to witness one’s own child suffering. From a baby’s first cold, there are few things in life that feel worse. Part of the way I endured excruciating pain after a surgery in 2007 (a stitch had slipped and I was bleeding internally) was to chant over and over to myself, better me than one of my kids, better me than one of my kids. But when there is treatment for what ails that child; when we know exactly what would bring some relief but we cannot deliver it despite our best and biggest efforts, there is an extraordinary anger that could change the path the moon travels in the sky if only I could figure out where to point it.

I took Abbie to Kaseman Presbyterian in Albuquerque because it is one of two hospitals in the city that has a psychiatric emergency department. I took her to the ER because, as I have been busy trying to get her an appointment with a psychiatrist, she has gotten more depressed. When left untreated, illnesses more serious than common viruses have a tendency to get worse. Untreated diabetes causes organ damage (or death); untreated asthma causes scarring in the lungs (or death); untreated depression causes more acute depression (or death).

We waited some 6 hours at the ER and finally we saw a Behavioral Health Specialist (BHS). She interviewed Abbie, and then she spoke to me. “She’s clearly very depressed,” said the BHS, “but she doesn’t meet the criteria for admission. She has some suicidal ideas, and she knows what she would do if she decided to end her life, but she hasn’t definitely decided to do it. Criteria for admission is an immediate suicide plan or extreme psychosis. You should take her home and make an appointment with a psychiatrist.”

“Won’t she see a psychiatrist today?” I asked.

“No, there are no psychiatrists in the emergency department.”

There are no psychiatrists in the psychiatric emergency department.

There are NO psychiatrists in the PSYCHIATRIC EMERGENCY DEPARTMENT.

“I can’t take her home without a prescription or an appointment or something,” I said.

The BHS looked horrified. “She can’t have a prescription. No doctor will write a prescription without seeing the patient. That would be unethical!”

Unethical.

Let’s talk about ethics.

Let’s talk about the ethics of insurance companies that reimburse so little for mental health treatment that hospitals have no incentive to keep their psychiatric units open.

Let’s talk about the ethics of a mental health funding system that pays psychiatrists less than most other doctors so medical students enter other specialties in hopes of paying off their student loans before they reach retirement age.

Let’s talk about the ethics of having a psychiatric emergency room with no psychiatrists in it, ever.

Let’s talk about the ethics of naming psychiatric care “behavioral health care,” as if the issues were in one’s actions instead of in one’s brain.

What about my ethics? How ethical is it for me, as a parent, not to get my daughter the medical care she needs? It doesn’t feel quite ethical to go to sleep at night, posing as it does the risk that she may hurt herself when I am unavailable to supervise. No, that doesn’t feel ethically sound at all.

When Abbie dislocated her knee at school 18 months ago, an ambulance transported her from there to the ER. At the ER, they put her knee in place, put a brace on her, gave her a dose of pain medicine and a prescription for pain medicine to take at home, and we walked out with a follow-up appointment with an orthopedist for the very next day.

There is no equivalent care for a dislocated mind. There is no method to deliver care immediately to a person who is suffering deeply but who has not quite gotten to the place where she seals the garage, or swallows the pills, or puts a blade to a vital artery.

By all means, let’s talk about ethics. Let’s talk about the ethics of a mental health care system that meets the needs of such a small minority of suffering people that suicide is the third leading cause of death among teens and young adults in the US, in spite of the fact that most people with mental illness can be successfully treated with appropriate care, and 90% of people who complete suicide have a diagnosable mental illness at the time of their deaths.

I sure am glad the doctor who “treated” my daughter the other night got to protect his ethics. Now how about we get busy protecting people’s lives? How about we talk about systemic ethics? How about we talk about treating suffering that originates in the brain the same way we treat suffering that originates in the heart, the liver, and the bones?

How about someone out there with a prescription pad helps me keep my daughter alive? How about we all start treating this like the emergency that it is?

My daughter will get the treatment she needs. I found someone to see her in two weeks (still an outrageous amount of time, but we’ll manage), and in the meantime we’ll do what we have to do to keep her safe, somehow.

The same cannot be said of the nearly 40,000 Americans who will end their own lives this year.

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

Value Options and the Denial of Care: Continuing the Conversation About Mental Health Care

ValueOptions® would like you to believe that they really, really care about getting mental health care to everyone who needs it. I cry foul.

On December 20, 2012, I wrote a post called A Little Girl in Danger: This Is America’s Health Care Crisis, in which I told you all about my friend Kirsten and her daughter, Pickles.

If you missed that post, allow me to sum up: Pickles is seriously mentally ill. She has multiple diagnoses, but the primary one is early-onset schizoaffective disorder, which has all the thought issues of schizophrenia combined with all the mood problems of bipolar in one developing brain. It is exactly as devastating as it sounds, but Pickles’s insurance company decided, unilaterally and against medical advice, that Pickles would be discharged with virtually no notice and with no aftercare provisions in place.

Except that it wasn’t exactly the insurance company that made that decision. It was ValueOptions®, a company that insurance companies and states contract to manage their mental and behavioral health care services. From ValueOptions® website:

ValueOptions is a health improvement company that serves more than 32 million individuals. On behalf of employers, health plans and government agencies, we manage innovative programs and solutions that directly address the challenges our health care system faces today. A national leader in the fields of mental and emotional wellbeing, recovery and resilience, employee assistance, and wellness, ValueOptions helps people make the difficult life changes needed to be healthier and more productive. With offices nationwide and a network of more than 130,000 provider locations, ValueOptions helps people take important steps in the right direction.

I don’t know what part of that statement includes removing an extremely ill child from necessary inpatient care when her safety is at stake. After I wrote my post, Kirsten’s and my mutual friend Chrisa Hickey of The Mindstorm started linking that post on ValueOptions® Facebook page several times every week in an attempt to provoke a response. Finally, after a month, she got a message from Tom Warburton, Vice President of Corporate Communications at ValueOptions®. You can read the entire letter and Chrisa’s response in Chrisa’s blog post Value Options Is Neither—An Open Letter to Tom Warburton, Vice President of Corporate Communications, Value Options, Inc.

The letter reads like nothing so much as a pat on the head. Warburton says, “I believe your persistence comes from a place of compassion for a story you read online… [and] now more than ever we should link arms to help move the agenda forward for mental illness,” as if this is an issue of an over-caring little woman with an over-identification problem. I snorted coffee when I read that because even if we didn’t all know each other (and indeed, depend on one another for the support that keeps us alive, parenting, and advocating day after day), nothing about this is even remotely Kumbaya for any of us. We are not in this for the glitter rainbows and little pink teddy bears, or whatever the hell Warburton is thinking. We are in this because our children’s lives depend on it.

There is no hyperbole in that statement. Our children’s lives are at risk because of their illnesses and we are not going to go away and cross our fingers and hope for the best. We don’t just fight for our own children and the children we know and love, but also for the children whose parents can’t fight; for the taxpayers whose money is wasted on programs that don’t work; and for the millions of people who continue to suffer and die with untreated or under-treated mental illness. We would love to “link arms” with companies like ValueOptions®, but a real conversation that leads to real change requires all of us to come to the table with our motives and values exposed. I strongly suspect that the motives and values of ValueOptions® have far more to do with balance sheets than with the lives of the 32 million Americans whose mental health care is “managed” by them.

Warburton also asks, “Are you sure that you have all the facts in the case you reference?”, which I can answer with an unequivocal yes. What I wrote in A Little Girl in Danger was not hearsay; Kirsten played voicemails from ValueOptions® employees for me, and I have been present during many of her calls with them. The question is not whether we have all the facts, but on which facts ValueOptions® is basing its decisions. In one phone call, a ValueOptions® representative said twice, “It’s just time for Pickles to go home,” and once, “We really feel like it’s time for her to go home.”

No, wait, let’s hit that one again: “We really feel like it’s time for her to go home.

Feel like??? Did someone draw a card? Read some tea leaves? Have a dream? “Feeling like” a given course of action is the right one is not medical judgment, especially when that feeling comes from people who have never met or treated Pickles.

ValueOptions®  is a private company, so their financial information is not easy to find*, but we do know a few things: the average salary of their employees is $83,000 per year. Here is a list of salaries for some of their mid-level employees, which seem pretty healthy to me for a company whose representative said, “We believe it is our job to make sure that we manage resources in the most effective manner for those that need. And as I am sure you are aware, funding for mental health treatment is dramatically underserved in both the private and public sector, so resources are scarce indeed. Our goal is to advocate for more spending – public or private – when it comes to mental health and substance abuse treatment.” It’s awfully disingenuous for a company to cry poor when their employee compensation is so generous. And remember, those are mid-level employees. Their executive leadership probably earn many times more than their average employees.

So to Warburton I say yes, absolutely. We need dramatically increased funding for mental health care in the US. On that point we agree. My concern, though, is that funding be used to treat patients, not provide ever-nicer lives to the executives of companies like ValueOptions®. Records obtained under the Freedom of Information Act indicate that in Illinois,ValueOptions® has been steadily and dramatically decreasing the number of children it approves for residential treatment, in spite of increasing need. Keep an eye on Chrisa’s blog for more information about that.

We have two urgent issues to deal with: first, we’re talking here about people. People with serious mental illness might be weird and scary. Some of them will never have conventionally productive or successful lives, but that does not make them disposable. They are beloved children, grandchildren, nieces, nephews, siblings, parents, spouses, and friends, full of gifts, talents, love, and the innate value of every human. They deserve every opportunity to reach their potential, and dammit, we as their parents deserve to witness them experiencing joy and the satisfactions of success.

The other issue is the money. Our taxes (and much of ValueOptions® revenue is from taxes) are funding an outrageously top-heavy system. When I visit Pickles at her residential treatment center, I am dismayed at the cafeteria where we visit. It needs a good scrubbing, a fresh coat of paint, and new tables, but the money for cosmetic (they aren’t really cosmetic; an ugly environment is not conducive to emotional well-being) fixes is not often available. The low-level staff is constantly changing because they are overworked, underpaid, and poorly trained, a situation that is brutally difficult for the children and adolescents in their care. In facilities all over the nation, there are staff who are dedicated and caring. They want to do wonderful things for and with children who need treatment, but they do not have the resources to make that happen.

And, of course, many children who need that level of care (and other levels, from acute inpatient to day treatment to intensive therapy that encompasses many hours each week) simply don’t get it because someone in an office somewhere really feels like that child doesn’t need it.

This is no way to run a health care system. This is no way to care for the weak, the vulnerable, and the sick. I invite ValueOptions® to come to the table for a real conversation about real problems and real solutions. Tom Warburton, we see your Kumbaya linking of arms and we raise you one deeply troubled little girl in urgent need of continued services.

 

*A huge thank you to Alena Chandler for her research help.

You Are Going to Pay for Our Kids

If we don’t pay for treatment for people with mental illness, that doesn’t mean we won’t eventually pay for people with mental illness. The difference is, instead of paying for health care, education, housing, and other programs that meet real needs on the front end, we pay for the disastrous consequences on the back end: police, jails, prisons, and long-term institutionalization.

For all of his struggles, and in spite of the amount of suffering that exists in his day-to-day life, Carter is among the very most fortunate of the seriously mentally ill children in the US. His prognosis is vastly improved for exactly one reason: money. My family has made an enormous investment in Carter, enabling me to stay at home so that Carter is with me during all his non-school hours, and paying for his tuition to the tiny private school where he finally feels safe enough to learn.

Those two things are, along with an excellent psychiatrist and a wonderful therapist, the things that stand between Carter and the nightmarish experiences of 2009 and early 2010. The relative stability we have enjoyed since then would not be possible without that money. I don’t know any kids whose illness is of the depth and severity of Carter’s who have stayed out of the hospital as long as he has.

This relative stability (I must always use the qualifier relative.) vastly improves his chances at a happy, productive adulthood, because his brain is now wiring around things like feeling capable at school; going to the grocery store and having pleasant interactions with strangers; and the myriad small successes of daily life, like helping around the house and taking good care of our family dogs. There are a thousand things that a typically-developing child of his age does that he cannot, but in 2009, there were months in a row when he couldn’t go to any store and I ran all the errands in the evenings after Brian came home from work. He couldn’t be around other children without my attentive supervision, lest someone get hurt. Our dogs spent most of their days in our sunroom for their safety. Many days, I didn’t even feel safe to take him in the car by myself and Brian had to take time off of work to ride along to appointments.

Because of my family’s investment, Carter has a chance to become literate. He may be able to hold a job someday. His odds of incarceration, long-term institutionalization, and homelessness are decreased.

Put more simply: Carter will probably be cheaper as an adult because of this investment on the front end of his life. He might not cost much more than the price of a monthly Social Security payment and Medicaid for his outpatient psychiatric care. There are no guarantees, and he may very well cost a mountain of money in the form of a prison cell or a hospital bed or the constant bookings into county jail that define the lives of thousands of people who are mentally ill, but his chance for a good life is improved. Vastly.

You know who doesn’t have all the advantages that Carter enjoys? Virtually every child in the US with serious mental illness.

Let’s start with education, with the caveat that most of the people we worked with when Carter was still in public school were knocking themselves out to provide him with what he needed to be successful. The system, though, threw up roadblocks until it was almost slapstick. High-level special education is expensive, and schools do not want to provide a level of special education that is even one tiny increment higher than what is absolutely necessary. Further, the law does not require schools to help children reach their full potential. Education law is mostly written in mushy language that leaves a great deal up to the people filling in the boxes on the forms, but the keywords are appropriate and adequate, not best or even good.

The result of all this was that Carter’s school provided more services in tiny increments, then waited for Carter to fail before adding more services. Around and around we went, with Carter required to fail. And fail. And fail. We knew what he needed. He could not function in a regular education classroom, but there was no way to leapfrog to an appropriate setting. Laws that were originally intended to keep schools from locking students with disabilities in dismal classrooms where all their talent and potential was ignored (a noble cause, to be sure), like least restrictive environment requirements gave the school the out they needed to resist providing an environment in which he could learn. The results were nearly catastrophic.

Carter screamed all the way to school, every single day, and when we arrived there, a teacher or an aide had to pry him off of me and I walked away while he shrieked for me, which would all be horrible enough, except that the terror was with him constantly. Most days, he cried and screamed during all the hours he was at school, spending good chunks of his day in the nurse’s office. If he was lucky, he would throw up, which was the only thing that inspired anyone at the school to call me. Otherwise, they would let him cry, insisting occasionally (as I heard from the hall one day) that he “Stop it right this minute! There is nothing wrong with you!”, determined to force him to deal with being at school. I would pick him up from school and within an hour, he was down with a migraine. By dinner, he would be finished with the blinding pain and the vomiting in time to start crying about his fear of school the next day. He couldn’t sleep at night because of his anxiety, and when I woke him in the morning he cried nonstop, with occasional breaks to vomit.

I recorded this audio in September, 2009 by hanging my phone from a camera strap to the back of my seat, in front of Carter. I would have edited it down to the high points for you, but I really can’t bear to work with it. You can barely hear me murmuring in the background because the phone was behind me, and the audio gets choppy a few times because Carter kicked the phone. I feel horribly guilty listening to this recording, knowing that I forced Carter to endure this level of suffering for nearly three weeks. Everyone at the school was insisting that I bring him; that he be on time; that he stay until the final bell; that he learn to handle being away from me during the day. Every instinct was screeching no no stop don’t do it but I couldn’t listen to myself.

Truth be told, there’s a secret that many of us whose kids have mental, emotional, and social problems keep: so many people tell us, in ways subtle and blatant, that our kids are just fine if only we would stop making such a fuss, that we believe it a tiny bit. Some part of me thought, in spite of all the evidence to the contrary, that Carter could be forced to be OK, that I was babying him, that he just had to learn to suck it up. This is the emotional equivalent of teaching a child to swim by dropping him into the heart of the ocean, mid-hurricane, but the notion is so prevalent, I couldn’t shut it out. I wasn’t confident enough to protect him.

At the end of the recording, you can hear Carter begin to calm down. That’s because I made a decision, as I drove, that I would take him home, and I never tried to take him back to that school again. I had no plan; we had nothing else in place, and no idea if there even was any other option for us. I just knew he couldn’t do it, so I quit my job, bought a book about homeschooling, and prayed for a solution.

All that fall and winter, I drove Carter to therapy and psychiatry appointments and played learning games with him in hopes that he wouldn’t forget too much of what little he had learned in school. My husband, Brian, missed work often after Carter tried to throw himself out the door while we were going 65 miles an hour in the inside lane of I-40 and I was afraid to drive alone with him. We slept in shifts when Carter was so severely insomniac that he slept only on alternate nights. We kept him out of the hospital by the skin of our teeth by turning door locks around so that we could lock ourselves in a stripped-down “safe” room with him and learning to do restraints. We were bruised, beaten, bitten, and battered. We tried one medicine after another (after another after anotherafteranotherafteranother) and slowly, traumatically, came to terms with the fact that Carter didn’t have just an anxiety disorder, or an unusually bad case of ADHD, or some other well-known childhood emotional malady, but something bigger.

Imagine, if you will, what might have happened had I been unable to quit my job? If I had been a single parent? If there were other issues in our family (addiction, for instance) that made Brian and I unable to care for Carter in such an intensive way? The cost of enabling me to stay home with him is small compared to the costs associated with the hospitalization that he would have required if my job had been essential to our economic survival, but if not for my family, I could not have quit.

The only thing parents of kids with mental illness rely on more than the education system is the health care system. Those of us whose kids are seriously ill can’t keep our kids alive without it, and even if we do manage to see to their survival, their quality of life is abysmal unless they receive appropriate medication and therapies. This is exactly the same for us as it is for parents whose kids have leukemia, congenital heart defects, or diabetes. The difference is, no one tells a parent whose child is in a medical crisis, “Sorry; there are no beds in the state. Take her home and give her Benadryl.”

I wish I was making that up, but I’ve heard that story from dozens of families, most recently last week. Mental illness can be fatal. People with mental illness may die or be permanently injured or maimed by their disease. But somehow, when the presenting complaint is in the brain instead of the liver or heart, we as a culture have decided that it’s OK to turn people away.

Private companies don’t have much incentive to maintain facilities for mentally ill patients. Inpatient psychiatric beds aren’t nearly as profitable as medical and surgical beds, and psychiatric patients usually don’t require the kinds of tests that bring in the big bucks for hospitals. When I was in the hospital for pancreatitis last summer, I had three CAT scans and 2 MRIs over the course of 5 days. A psychiatric patient in the same bed wouldn’t have generated nearly as much money for the hospital.

When hospitals send children away, parents are forced to absorb that deficit of care with their own efforts, doing things that no parent should have to do. I have restrained Carter as many as 3-4 hours per day while he begged me to kill him, to call the police to come kill him, or to take him to a tall building so he could throw himself off. This, in any group of parents whose children have mental illness, is a totally ordinary story. We do what we have to do because there is no one else to do it. No one asks parents of children with cancer to infuse chemotherapy at home. If there were no beds available in the entire state for a child in heart failure and the hospital sent that child home with instructions to administer Benadryl and go to bed, TV crews and outraged senators would be all over the situation in no time at all, yet it happens every day to families facing diseases of the brain and there is barely a ripple in the public consciousness.

Unless, of course, there is a mass shooting, at which point people everywhere start to ask, “Why didn’t someone do something? Why didn’t his mother/father/friends/teachers call for help? How could they just let this happen?”, and those of us deep in the mental health trenches laugh bitterly because you don’t know. You don’t understand. Maybe this or that shooter’s mother/father/friends/teachers begged and pleaded for help. Maybe someone sent them home from the hospital because there were no beds. Family members of people with mental illness ask for help, and our loved ones are placed on waiting lists. We try to prove that our children really are on the brink of killing themselves or someone else, because only under those criteria is anyone ever hospitalized in a psychiatric unit.

You know, if there are beds.

Mental illnesses are not static. They are progressive, and the longer a person with mental illness goes without adequate treatment, the sicker he or she becomes. Every time we are sent home to deal with things in the best way we can, we lose a little more of our children. They slip a little further from themselves, a little further from their potential, a little further from the families who love them. Just like a child with diabetes will get a little bit sicker and suffer a little more organ damage with every day her blood sugar is not adequately managed, a child with mental illness gets sicker without treatment, but no one would expect a diabetic child and her family to go home and wait months to see an endocrinologist. Here in New Mexico, the average wait for a pediatric psychiatrist is 4-6 months, if you live in Albuquerque. Children in rural areas wait much longer.  In the US today, there are approximately 7,500 psychiatrists who treat children and adolescents, while the need is for a number closer to 20,000.

Where are the news vans and senators now?

The right is trumpeting again about an “entitlement crisis,” insisting that we must stop wasteful spending on social programs. Here’s the problem with that: just because you cut a program doesn’t mean you’ve erased the problem the program was created to ease. We can cut right down to the bare bones, and we’ll still have to pay someone to drive the dead wagons.

If we don’t pay for treatment for people with mental illness, that doesn’t mean we won’t eventually pay for people with mental illness. The difference is, instead of paying for health care, education, housing, and other programs that meet real needs on the front end, we pay for the disastrous consequences on the back end: police, jails, prisons, and long-term institutionalization. The largest provider of mental health care services in the world is the US correctional system, and many people with serious mental illness only receive treatment for their conditions when they are incarcerated. People who could live successful lives with appropriate supports instead become homeless, end their lives, or use illicit drugs to endure the relentless and unbearable symptoms of their illnesses between stints in jail.

Almost no family has all the resources necessary to meet the needs of a person with serious mental illness so we have to do it together, with social programs. We’re are paying, and we’re paying big, but we’re spending our money on the wrong end. My insurance company resists paying for treatment that Carter needs now, but taxpayers will insist that someone pay for a prison cell if he hurts someone in the throes of a psychotic episode someday. Republicans don’t want to fund the expensive special education programs that kids like Carter require, but we sure as hell want cops to keep homeless people from hanging around the entrances to our favorite restaurants.

Almost all of us invest time and money into toothbrushes and regular dental care because we know that it’s cheaper and nicer than having rotten teeth falling out of our heads. We pay the people at Jiffy Lube to change our oil every 3,000 miles because we know it’s far less expensive than letting the engine seize. We hang smoke detectors in hour homes because we don’t want to be burned to death in the night. We have the good sense to recognize that some prevention in the beginning, even if it’s inconvenient and expensive, is almost always easier and cheaper than dealing with the disaster that will come later if we don’t.

Classrooms are cheaper than cops, trials, and prison cells. A hospital bed for a month at the beginning of a psychiatric crisis makes lots more sense than a jail cell for a year after a full psychotic break. This argument about whether or not to pay is nonsense; we are already paying, but we’re throwing our money down an immoral and inhumane suck hole. If the notions of morality and humanity don’t mean much to you, consider this: the return on our investment could be infinitely better.

We can do better than to toss some people aside like so much disposable waste. We can be better than we are now.

 

 

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Photo by Kathryn Denman

A Little Girl in Danger: This Is America’s Health Care Crisis

My dear friend Kirsten has a little girl called Pickles, and Pickles is very sick. Her diagnoses include schizoaffective disorder, generalized anxiety disorder, oppositional/defiant disorder, and attention deficit/hyperactivity disorder. She has spent the better part of the past two years in two residential treatment centers, one in Denver and one here in Albuquerque, plus six in pediatric psychiatric hospitals. There has been a frustrating cycle of days or weeks of improvement followed by a crash and increased psychosis.

Pickles is not safe outside of a secure facility. During her time at the RTC in Denver, Pickles disappeared at about midnight and was missing until the police found her about 4 hours later on a freeway overpass. She explained to Kirsten that E (one of her hallucinations) had said they needed to go for a walk because he had something to show her.

Pickles was, at that time, seven years old. She is now 8 and is psychotic most of the time, in spite of large doses of anti-psychotic medicines, mood stabilizers, and anti-anxiety drugs. In recent weeks, she has tried to stab herself with a fork, gouged her face with a ballpoint pen, and required emergency restraint multiple times. She is not able to go on outings with her group and she has not had an overnight pass with her mom, all because she is at risk of hurting herself or someone else.

She is also funny, charming, kind, and the very prettiest little girl in the world. When we visit her at her RTC, her favorite thing to do is put tiny ponytails in my husband’s hair and put makeup on him. She loves to sing and she loves presents: getting them, giving them, and making them. When her psychosis is quiet enough to allow her to be present, she has a sharp sense of humor and a stunning awareness of herself. She is, ever so slowly, learning to live with and manage her illness.

But she’s not safe yet, and in fact, she remains a danger to herself and others. Aetna Value Options has informed Kirsten that Pickles must be discharged Thursday, December 27, 2012, because she has reached her baseline and she will never get any better. The RTC has told Kirsten that she has no option except to take Pickles home and register her in the neighborhood school.

There are no aftercare provisions in place.

No psychiatrist.

No psychologist.

No respite care.

The education specialist at the RTC told Kirsten that Pickles won’t get a specialized classroom placement until she “fails” in a regular classroom setting.

Does it not occur to the people who make these rules that repeated requirements for “failure” are devastating to Pickles’s sense of herself as a growing girl who is working and striving towards something? That every calculated “failure” strips a little more of her spirit and her confidence?

Kirsten, who knows Pickles and understands her illness the way only a mother can (and more, since she holds a PhD in neurophilosophy), knows that this abrupt discharge is doomed. Her experience tells her that Pickles will be back in acute psychiatric care within weeks, if not days, either when she becomes unsafe at home, or when she has one of the seizure-like rages that happen often when Pickles is overwhelmed, probably while she’s at school, and likely resulting in a call to the police who will deliver her to the hospital, an episode that will be profoundly traumatic not only for Pickles but for all the students and staff who witness it.

After dreadful things happen (a child is hurt, or hurts others), one of the first questions that people ask is: how could her parents have let this happen? Why didn’t they get her some help? What we don’t see is what is happening here, namely, her mother is totally dedicated to getting Pickles all the help she needs, but she is being prevented from protecting her daughter. She is also being prevented from protecting the children at her neighborhood elementary school, her own safety, her neighbors’ safety, and the resources of local emergency responders who will be called on when Pickles hurts herself or someone else.

If Pickles bolts (which she has done often), what if she is hurt before her mom, school staff, or the police can find her? If she rages, what if she hurts someone before she can be restrained? At her RTC, she requires “C-teams” (which is a technique involving two staff members who help her calm down while standing ready to restrain her), restraint, and emergency sedation on a regular basis. None of those techniques is even remotely available in a regular public school classroom or her mom’s home. What if her hallucinations tell her to hurt someone? What if she becomes so overcome with frustration at the constant battle inside her own head that she tries to take her life?

What if she succeeds?

Everyone who knows Pickles agrees: she’s not ready for discharge. Her psychiatrist, her psychologist, her mom, and Pickles herself all know that this is a terrible idea. She cannot be kept safe in a home environment. People at the insurance company (who have never met Pickles) made this decision.

Pickles is in danger. Make no mistake: this is a life-or-death situation, and this is mental health care in the US today.

I am working furiously with Kirsten to prevent Pickles’s discharge until she is ready and all appropriate aftercare accommodations are in place. She needs a slow, gradual transition with lots of opportunities to feel successful as she meets small goals along the way. And, of course, she needs to be safe, and she needs the people around her to be safe. You can help by sharing Pickles’s story. No parent whose child had acute liver or heart disease would be expected to be the sole caregiver for that child’s medical needs. Why should it be different when a child’s illness exists in her brain?

UPDATE: And it’s all good!

The office of NM Governor Susana Martinez was very responsive to Kirsten’s calls for assistance. At this point, it looks like Medicaid will be picking up where the private insurance left off, and the Children, Youth, and Families Department will be requiring their own approval when the time comes for discharge and aftercare plans. No one is relaxing entirely yet since the RTC has just submitted a new claim to Medicaid and it hasn’t been approved yet, but as soon as all the Ts are crossed and Is dotted, Pickles will again be secure at RTC until any changes, including discharge, are appropriate and safe.

Thank you thank you thank you (and dozens more thank yous) to all who offered support and love. Thank you to those who shared contact information and worked to share this story as widely as possible. Thank you to Governor Martinez, her staff, the staff of Pickles’s RTC, and NM CYFD for putting the safety and well-being of a little girl above dollars. Please continue to share this story. Kirsten and I were just discussing yesterday how differently this could have worked out, had Kirsten not known how to work the system the way she did (and I do hope I was helpful in that part) and had online friends with broad experience with advocacy not offered their advice (We didn’t end up using all the contact info we got, but wow, do I have an impressive list to call upon if and when any of my local friends should need it!). There are other parents out there, parents who don’t have much education, or don’t have much money, or have cultural or language barriers, and so many other issues that prevent them from advocating for their children in the way Kirsten does for Pickles. Kirsten is not cowed by the authority of people who say no they way many people are, and that is not a failing, just a fact of temperament. This could have gone so differently, and Pickles could have been the lead story on the local news, and the first thing a thousand people would have said from in front of their televisions is, “How could her parents have let that happen? What kind of parents are they?”

The next time you hear a story like that, and you hear people judge the parents, please remember Pickles. There are bad parents out there, sure, but there is also illness that parents alone are not equipped to manage on their own, even the best among us. Remember what might have happened here; what very likely would have happened if Kirsten was not a fierce mother with fierce and loving support behind her. Mental health care in the US must change. Pickles and Carter and all the children and adults who need care deserve sensitivity, kindness, and treatment. It doesn’t have to be this hard.

Ordinary Violence, Ordinary Heroism

The children of Sandy Hook were just a few of the children who died last week from guns. In the US, one child dies every three hours from a gun.

Another day, another news story about bullets tearing bodies.

Another news story about shocking violence, another moment of stunned silence.

Another moment of stunned silence, another round of heated debate.

The violence in Sandy Hook last week is too terrible to comprehend. In the early hours of the news of the tragedy I was plagued by a near-hallucination in which I could hear the parents of the murdered children screaming. I won’t imagine what they felt, both because I cannot bear it and because their grief is a uniquely unimaginable thing, yet I can’t help imagining. My own youngest son’s cheek has never felt as warm and soft under my kiss as it did on Friday afternoon.

But…

The children of Sandy Hook were just a few of the children who died last week from guns. In the US, one child dies every three hours from a gun.

Every three hours, every single day, every week, every month. Eight children per day. Twice as many preschoolers die each year from guns as law enforcement officers die in the line of duty.

Twenty children died in Sandy Hook. Twenty times one hundred forty die every year in the US.

This problem we have in the US—the violence perpetrated in our homes, our schools, our workplaces, our malls, and hospitals—is bred and nurtured in the soil of ordinary violence.

The ordinary violence of poverty, loneliness, and invisibility, of a judgmental comment or a critical glance. Ordinary violence is victim-blaming, racism, ableism, sexism, and fear-fueled anger toward all who seem other. Them, they, those. Ordinary violence is in our language, in our unwillingness to listen and hear the experiences of people we don’t yet recognize as our friends. Ordinary violence is the mommy wars, underfunded schools, families struggling without support, and an inadequate mental healthcare system.

My husband said to me on Friday evening, “You go out and try to see a psychiatrist and I’ll go try to get a gun. We’ll see who’s successful first.” And yes. A thousand times yes, I believe that: we need more help and less firepower. There are deep systemic issues and the stark difference between the ease with which almost anyone can get a gun and the difficulties all who need it face when seeking mental health care are a potent illustration.

But there is more: there is the heat and fury with which we live our lives, the reckless way we handle each other. We live in fortresses of shame and fear. We close and lock our doors and don’t let one another come in. We don’t see each other, not really, and from that narrow, sheltered perspective, we write laws, cast votes, build communities, and create a culture that meets the needs of only a few of us. We warp our religions to justify hate. We require our people to serve our laws instead of making laws that serve people. We track violence into our homes like something stuck to our shoes, and we carry that violence with us back out into the world, where we step over those who have no homes and avoid meeting the gazes of those who have no hope.

Mass shootings make heroes of teachers in classrooms; of boyfriends in movie theaters; of store clerks at malls. We all have the potential for such heroism, and we needn’t wait for a person in body armor and bearing automatic rifles to burst into our lives for an opportunity to express it. There is no person, no group, no leader who can fix this alone. There is only us, creating the world in which we live.

What will we build?

How will we lead?

We need to do two things: first, work for systemic, institutional change around guns, mental health care, and education. Contact your representatives every way you can: call, email, snail-mail, and fax them. Insist that guns be taken seriously as the public health risk that they are and that our lawmakers make mental health parity a reality. Donate money to The Brady Campaign to Prevent Gun ViolenceThe National Alliance on Mental Illness, and The Children’s Defense Fund, or volunteer with those or other organizations working for change. Fund, organize, or volunteer to help with a gun buyback program in your community. Sign petitions. Meet with your representatives and tell them what change you want to see.

While we’re busy with that work, we must also meet ordinary violence with ordinary heroism. See people: the invisible, sad, lonely, hopeless people, and meet a need. Not because those people are killers-in-waiting (they most assuredly are not), but because when we do what is good and kind and decent, we create a new world. Listen to someone. Share a meal. Look up from the screen of your phone and smile. Be patient. Slow down. Accept kindness in turn.

We can do better, and we will do better, but we have to put our shoulders to this boulder and push. There is no alternative if we want to sleep at night or face our reflections in the mirror come morning. People keep telling me that there’s nothing that can be done and if that’s true, we aren’t the people I thought we were. To paraphrase Winston Churchill, we’re in hell now. Let’s not furnish it; let’s keep moving and find our way out.

 

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Photo attribution: By Bangin (Own work) [GFDL, CC-BY-SA-3.0 or CC-BY-2.5]