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.