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.
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.
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.
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.)
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.
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.
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.
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.