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.

Catching Up with Carter J

When I don’t write much about Carter for awhile, I’ll get notes from people asking how he is and what’s up with him. I told Carter about that yesterday and he asked, “So those people are kind of like my fans?”

“Yes, I guess they are,” I said, and that made him shoot out flames of happiness just like when he’s getting ready to spend the day with his grandma and grandpa or he’s accomplished something very difficult at school.

Then he gave me a long list of things he wants to tell you. There was at least ten minutes of material about Ninjago (that’s a commercial for Lego in TV form) and I’m going to make an executive decision and just distill that to this: Carter really, really likes Ninjago. The rest, though, is stuff that might interest those of us who are not pre-pubescent kids.

Carter went back to school a few weeks ago with almost none of the angst and drama that usually accompanies this transition. I was in Chicago for the first two days of school and we expected that that would drive his anxiety levels to a very high level, but he did great. For the first time ever, he walked into school on the first day with a few hugs and kisses from his dad, and no tears. He was all puffed up when I got home from my trip, telling me how he was scared but he could totally handle it and it was a good thing because some of the new kids were scared and Ms D and Ms B needed his help comforting them.

For a guy who has spent so much of his life in agony because he was crippled by anxiety and convinced he couldn’t handle things, this was a huge deal. He hasn’t had nearly enough opportunities to be proud of himself, so to see him feeling like big stuff was a real treat. Brian and I were shooting out our own flames of happiness to see him feeling so good.

The school he goes to is tiny and isn’t really divided by grade. The elementary kids are split into upper and lower grades, but movement between the two rooms (and some of the older kids move back and forth to the middle school room, too) is fluid. Carter spends the morning in the upper elementary with Ms B doing math, reading, and writing. In the afternoons, the two groups get together to do project-based work in social studies, science, and art. Once a day, he goes to work with Ms C for 30 minutes of one-on-one reading instruction.

He wanted me to be sure to tell you about his teachers, who he loves and adores. He’s been with Ms D (the lower elementary teacher) for four years now, and he and she have a special connection. It’s true love between them. Ms B is new this year, and Carter says he likes her almost as much as Ms D, which is pretty impressive since if Carter lists his favorite people in the world (something he does obsessively), Ms D gets a place the list more reliably than several members of his own family.

If your 11 year old child wears a top hat to school and doesn’t come in tears, you know that’s an extraordinary school.

This smooth transition back to school is a happy surprise after months of surprising stability. Spring is typically the time of year when Carter comes apart (pretty common among people with mood disorders) but last spring was the smoothest we’ve had in many years, which led to a better summer. Early fall is usually when we’re beginning to get back to baseline. Last year, we were more knowledgeable than ever about what Carter would need, so we increased his lithium early (When he drinks more water and sweats more as the weather heats up, his lithium blood level drops, requiring a higher dose.) and treated sleep issues aggressively. For the first time, we got the manic episode right at the front end, before it spiraled out of control.

Now that the weather is cooling off, he’s starting to be a little shaky (a sign that his lithium levels are a little high) so soon we’ll reduce his dose, but this makes us a little more optimistic.  After several nightmare springs in a row, we have hope now that if we could get the jump on mania once, we may be able to do it again.

There is only one symptom I can think of that is not dramatically improved. We haven’t seen one of those terrifying, seizure-like rages in a couple of years. His anxiety has not improved as much (and he has been struggling with anxiety-induced hives for a few weeks) but it is noticeably better. He’s had no more than the very occasional, minor breakthrough psychosis and he’s even sleeping well. Only his frequent episodes of irritability have resisted all our attempts at treatment, but with so many other successes, we have renewed hope.

The insurance continues to refuse him any occupational or physical therapy, and as a result he gets a little more knock-kneed and sway-backed every year (this is a result of his hypotonia, and the extra weight that his anti-psychotic medication brings with it doesn’t help). We won’t stop pressing them to provide these services, but I’m not optimistic.

Carter was napping during church and I was trying to get a picture of the hives on his hand. I don’t know if you can see those, but isn’t he cute???

At school, he likes math the best. He wants the books we read to him to have lots of action and danger, and it’s best if there are monsters. He’s glad you are curious about him and he hopes you’re having a very good day. Finally, he says that, if your kids have trouble with feelings like he does, he would like you to tell them that Carter says if you use your skills, take your medicine, and ask for help when you need it, maybe you’ll feel better and he hopes nobody has to go to the hospital today. 

Our kids with mental/emotional/social/behavioral issues may have lots of big problems, but they also have big hearts full of compassion. It isn’t always easy to be Carter’s mom, but it’s always easy to love him.

Graduate

Jacob called me on a Friday morning a few weeks ago and asked, “Hey Mom, can you come pick me up at Job Corps? Like, now?”

Job Corps, where Jacob has been living and studying for the past year, is a federally funded education and training program for people ages 16-24. Students earn a high school diploma or GED and train for a career, all at no cost to the students or their families. It’s a great program for lots of reasons, and I’m sure it works for different students in different ways, but for Jacob it’s been perfect because he needed some independence from his family but he wasn’t ready to be on his own. Job Corps provided a bridge between family dependence and independence.

I drove across town to pick him up, and there I found a sturdy, confident young man surrounded by luggage and wearing a hardhat and tool belt.

In his backpack, he was carrying his diploma, the verification of one of the many things he has accomplished in the past year.

Once upon a time, when I was not much older than Jacob is now, I wanted to have a baby, and that baby has taught me more about myself and this world and God than almost any other person on this planet.

I learned early on that there are almost no joys in life so great as seeing one’s child feel proud of himself for an accomplishment that has been hard-earned, and Jacob has had much to be proud of, being born as he was with a tremendous will to conquer. When he was two, he decided that he would learn to turn a perfect somersault, and he did nothing but turn somersaults for two days until he could do them with ease. Likewise, when he thought it was time to learn to ride a bike, he ignored banged-up knees and scraped palms and tried, tried, tried with determination until he rode without a wobble.

When we went for our tour of Job Corps and one of the teachers told the gathered group of potential students, “We’ll try to help you every way we can, but lots of kids don’t finish the program,” Jacob leaned over and whispered in my ear, “I’ll finish, Mom.” And I knew he would. I never had any doubt.

Once upon a time, I wanted to have a baby, but what happened instead was that there was this whole, extraordinary person. Congratulations, Jacob. I hope you’re so proud you bust your buttons. I hope, too, that you know that even though you’re a man now, I’ll still sing the humming song to you whenever you want.

I love you to the moon.

That Old Arbitrary Routine

Many, many years ago, when I was a wee slip of a girl (18? 19?), I worked in the infant room of large daycare center whose owner was quite adept at preventing reality from intruding on her worldview.

Hence, rules like this: all the babies have to move from the infant room to the toddler room during the week of their first birthday.

Also: no babies may move from the infant room to the toddler room until they are walking.

The fact that only about half of all babies are actually walking by their first birthdays? Why, those babies who don’t walk are allowed to be lazy! Their parents carry them everywhere and they have no motivation to do the hard work of learning to walk!

See what I’m saying about reality?

My first run-in with this set of conflicting rules had to do with a baby who I’ll call Jana. She was an adorable baby, with thick, dark hair and thighs like giant slabs of beef. Oh, she was a juicy chunk. But she crossed the magical 12-month mark and she was still crawling like the lazy little slug that my boss’s worldview said she must be.

Liz (my boss) started hounding us constantly, “Teach that baby to walk!”, so although I knew it was a ridiculous thing, I started holding that baby’s hands and walking her all over the baby room until my back screamed at me to stop. Jana didn’t mind a bit, but when I let go, she crawled away, which all but enraged Liz.

Not long after her birthday, Jana’s parents asked Liz when she would move to the toddler room. They wanted her in the more stimulating environment with the other one year olds. In the baby room, there was only napping, eating, and the waving of rattles, whereas in the toddler room, there was napping, eating, and the smashing of crayons onto pieces of paper.

Liz told them that their deficient and lazy baby would not be allowed to move until she got up on her hind legs and walked there herself, at which point Jana’s parents joined in on the relentless harassment. “Walk, baby, walk over here and give me a kiss!”, they begged. We tempted Jana with cookies and shiny toys. Her parents bought some kind of harness that Jana wore while an adult held the straps. Our backs breathed a sigh of relief, but Jana did not walk.

After watching Jana’s dad carry her out to the car one evening, Liz stormed into the baby room and said, “Fine. If those parents want their baby to crawl away to kindergarten, I don’t care anymore. We’ll move her to the toddler room tomorrow and if she gets stomped by the other kids, there’s nothing I can do about it.”

We moved her the next morning, her shame-faced parents hanging onto Jana’s hands as they walked her across the center as if they had failed some fundamental parenting task. Two months later, long before she was eligible for kindergarten, Jana, via the magic of brain wiring, muscle development, and the alignment of the stars, stood up and walked. She had not been stomped by the other 1 year olds, most of whom were too small and too wobbly on their feet to be any kind of danger to anyone.

Jana has maintained an outsize prominence in my memory circuits all these years, both because the whole situation made me so angry I saw dancing red spots behind my eyes whenever I thought of it, and because Carter has been up against similar arbitrary standards all his life.

When Carter was still in public school, I used to be afraid I would stand up and scream during his IEP meetings, “If any of you compares his abilities to this “grade level” bullshit one more time I will start slapping people!”

Oh, of course I know it’s what the system requires, and most of the individuals who worked directly with Carter were concerned much more with his progress than they were with numbers on forms, but still, those numbers (and the few people who insisted on paying more attention to those numbers than the little boy in front of them) were a torment to me.

I remember one of our very last IEPs, during the spring of Carter’s first grade year. He had done kindergarten twice, so it was his third year at that school. The lead special education teacher (who didn’t actually work with Carter but had started showing up at all our meetings after my husband and I made several calls to the district office to complain about IEP noncompliance on the school’s part) started reviewing the numbers: Carter should be at 1.8 (first grade, eighth month) or ahead, since he repeated a year, she said. He’s at K.4 in math, K.2 in reading, and his writing abilities are what we would expect from a child who hasn’t even begun school.

Was it my imagination that there was a bit of a tone? A little hint of Liz’s old blame-the-parents routine? I could feel it under the words: he’s absent too often (never mind the six doctors’ letters I’d offered as proof of the many reasons Carter missed school), you don’t push him hard enough, you don’t drill him at home. Maybe it was my imagination, but certainly there was no love lost between us.

This practice we have of comparing children to arbitrary standards is of some use in identifying children who need help, but I’ve never perceived it as anything but a stick with which parents and children may be smacked. Compounding my distress during those IEP meetings was the fact that, at that time, my life revolved around Carter: getting him appropriate medical and psychological help, guiding him through explosive meltdowns, nursing him through frequent episodes of cyclical vomiting syndrome, studying special education law, on and on and on. I had begun to accept that Carter’s many limitations extended into his academic life, but I was nowhere near healed enough from the painful process of gaining that acceptance to deal with having it flung around the room in an insensitive manner.

To be looked at sideways by that woman was really more than I could bear.

So I spoke up in that IEP meeting and said, “I know he’s behind grade level. I don’t want to talk about that anymore. How is he doing? Is he making any progress?”

His special education teacher (the one who was actually with him more than half of every day) jumped in then, telling me all that he had learned, and while most of it was indeed preschool and kindergarten material, he was learning! He was making progress, albeit slow. I never would have known that he wasn’t sitting at a table and drooling all day if I’d not asked my questions and we’d remained focused on how he compared to grade level expectations.

All I want is for Carter to be challenged in appropriate ways. Is he learning and making progress (no matter the pace)? Is he happy at school? Is he curious and eager to learn new things?

If the answers to those questions are yes, I don’t care one bit how he measures against a list of things kids should know at any particular age. I don’t know where he’s going, but I’m convinced he won’t get there faster if we hit him (and me!) over the head along the way.

This post originally appeared at Hopeful Parents.

In the Beginning

Here’s the thing: in the beginning, everyone is lost and alone.

No matter how a person goes from being parent to parent of a child with disabilities, in the beginning the world turns itself ass-end-up.

Whenever the news comes or the realization dawns—during pregnancy, immediately or shortly after birth or adoption, or later—there is a period of disoriented scrambling that is made up of some combination fear, grief, and shock.

In the beginning, the air is filled with new words—diagnoses, symptoms, tests, therapies, medicines, treatments, programs, prognoses, so many acronyms—and schedules are thick with new places to go and new people to see.

All at once, there are arrangements to be made, waiting lists to which the child’s name must be added, professionals’ credentials to be verified, sources of assistance to be researched, potential therapies to be chosen.

And meanwhile, the grief and fear.

We take our children everywhere, make sure they have every evaluation, test, and assessment, travelling across town or across states or across the globe. We drive them to see the best available health care providers we can access, sit up all night researching medical and educational options. We learn to provide care at home or spend hours sitting in the hospital. We learn new methods of discipline, feeding, communicating, educating, loving—whatever our children need, we try to find a way to provide it.

And meanwhile, the grief and fear.

We wait. In between crises, we wait. We wait in exam rooms and hallways; we wait for phone calls and lab results. We wait for meetings, appointments, and insurance company decisions. We wait on schools, therapists, and doctors as we claw our way through layer after layer after layer of red tape.

We learn a new language. We learn what our insurance companies will and will not cover. We learn special education law. We learn the intricacies of our children’s diagnoses. We learn how to take care of our kids under extraordinary circumstances. Some of us learn to say goodbye.

And meanwhile, the grief and fear.

We show up. We arrive early, well-prepared, steely-eyed and strong, for confrontations with educators, health care professionals, and insurance company representatives.

We don’t cry until we get home, usually.

We find educators and health care providers who will give our children what they need and we weep with gratitude.

And meanwhile, the grief and fear.

People tell us we are heroes. They ask how do you do it and they say you must be very special. They say I could never do what you do.

And we smile because we know this secret: that we are utterly ordinary.

Some people tell us that we are fools. They question our decisions about treatment, ask us if we have tried diet X, therapy Y, or system Z. They wonder aloud about causes, ask probing questions, look at us with one eyebrow cocked.

And we smile because we know this secret: that there is no right thing to do and there is no wrong thing to do. There is only the next thing to do.

And meanwhile, the grief and fear.

The landscape around us is unfamiliar as relationships change. Some friends disappear; some family members judge us. Marriages are strained and some of them rupture. Siblings feel hurt, angry, and afraid.

Our economic lives are violently altered as days are missed from work or jobs are quit or lost and medical bills grow to outsize proportions.

Our own health suffers. We struggle to find the time and energy to attend to our own needs for healthy food, exercise, and medical care. We lose many, many hours of sleep.

We earn our PhDs during the wee hours of the night, studying, researching, questioning, agonizing, wondering, and wringing our hands. We discuss, consult, and discuss again. We watch our children, attuned to every slightest shift. When medications or therapies change, we turn up the gain on our radar until we jump at every slightest twitch or sound.

And meanwhile, the grief and fear.

Here’s the thing: in the beginning, everyone is lost and alone.

Here’s the other thing: in the beginning, everyone feels like the only person who has ever felt so lost and alone.

Eventually, the beginning begins to end and we find that our feet are under us, that we have found a new normal. We discover that we are ourselves again; changed, to be sure, but released from the shock that has blistered us for months or years.

We create a new life for ourselves and our families; not at all what we expected, built with tape and paper clips and bits cast-off string, but we find that we have become adept at making things work, even when nothing works.

We find new friends to replace the ones who left us. We find support for ourselves and find that we are better able to support our children.

And meanwhile, the grief and fear, now shared.

One Year

Carter has been at his private school for kids with special needs for a year now.

One year without threats to send my husband and me to truancy court in spite of letters from multiple doctors documenting the medical causes of those absences. One year during which Carter’s teachers have called us every time he has become excessively upset, aggressive, or ill during school hours. One year of adequate supervision so that Carter doesn’t become the target of bullies on the playground or in the lunchroom. One year of sending my son to a school where people care about him.

It’s been remarkable, to see what Carter can do when he knows he’s safe. I’m still stunned when, at the end of a school day, his teachers say things to me like, “He’s been having a hard time the past few days. Is there anything we can do to help him get to feeling better?” There is no scolding; no shaming; no tsk tsk tsking. Just people who care about my kid enough to get to know him and work with his issues instead of against them.

Not that I blame the teachers for our terrible experience at the public school. On the contrary; all but two of the teachers we worked with really wanted to provide the education that Carter needed, but they didn’t have the space or time they needed to help him. In Carter’s class at the private school, there are twelve kids, two teachers, and an educational assistant. If any of the kids falls to pieces, an adult is available to help. No one has ever hollered at Carter (I heard it from the hall twice when he was at the public school), sobbing and near-hysterical, “Stop it right this minute!”

No one points out to us anymore that Carter is not working at grade level. I always hated that, the charts and graphs that showed Carter gaining a few months of educational progress per year. He’s still far, far behind his age group, but that’s not going to change so I don’t see any real purpose in focusing on it beyond what the law requires. Carter’s current teachers concentrate on the gains he’s making, comparing him only to himself across time.

For all my celebration about being able (because of the generosity of my parents) to give my child the best possible education, I also have a broken heart for the kids who don’t have the same thing. Several times in recent weeks, as education budget cuts have filled the news, my husband has insisted that I turn off the TV, shut down the computer, and put away my mobile device. “I know you’re not playing solitaire on that thing because you’re gritting your teeth. Put it away!” he says, and I do, because he’s right. Tying myself in knots over budget cuts isn’t going to increase funding.

So I’ll write another letter about what Carter needs, and what my three typically-developing kids need, and what our nation needs, and I’ll send it to the people who make these decisions. I’ll encourage you to do the same thing.

And then I’ll try not to panic because as bad as it is now, it’s soon to be worse.

This post originally appeared at Hopeful Parents.

Joy, Seasoned with Anger

My whole family showed up for Carter’s holiday performance at school last Friday. We like to arrive en masse and scare people with our numbers and our ability to make noise.

Not really, but no matter our intentions we’re the loudest people wherever we go.

In any case, we arrived at noon and the dozen kids in Carter’s class were nervous and excited for their performance. They took the stage on wobbly legs. Some kids said their lines so fast, we couldn’t understand a single word. Some of the kids whispered their lines, and the songs…how in the world should I describe the songs? Out of tune, shrill, and delivered at top volume.

It was fabulous.

I’ve seen Les Miserables, the actual Broadway show, and it paled in comparison to the rich and wonderful brilliance of Carter and his classmates on that stage. It was one of those shining events, created of the very stuff that makes life wonderful.

I went home full of joy. Carter’s school meets his needs in every way that matters. The twelve children in his class are in grades 1 through 5; all of them have mental and/or emotional issues. The middle and high school classes have similar numbers of students. The elementary school group has two classrooms, two teachers, and one teachers’ assistant. Carter also works one-on-one with a reading specialist for 30 minutes a day. Carter works hard at school, and while he’s working nowhere near his age-peers at the public school, he’s learning.

My son is happy and he’s learning. It makes me tear up, looking at those words on my computer screen and knowing that they’re true. Equally wonderful is the knowledge that, if (when) Carter becomes acutely symptomatic again, his teachers will help him. No more working at cross-purposes with the people who are charged with educating my child. No more fighting and struggling; at Carter’s school, we have found genuine compassion and a willingness to help.

My joy is always tinged with anger. Every child at Carter’s school was once a student in a public school. They all had IEPs or 504s. Their parents fought the same fight we fought and, discouraged, turned to our financial resources (or those of our families) for a solution. All of Carter’s classmates come from families with access to enough money to pay private school tuition.

We’re not families who hope that, by making a large financial investment in our children’s education, our kids will go to Ivy League schools instead of public universities. We’re not aiming to create academic and professional brilliance in our children’s futures.

No, we want our children to achieve whatever level of academic success is possible for them. For Carter, at least, that’s very unlikely to include college. I don’t care about that. I don’t care about anything except helping Carter manage his illness and his various issues in such a way that he can create a satisfying, productive life for himself, whatever that means.

And that anger? It is always about this: the hundreds of other children in Albuquerque whose families cannot provide this extraordinary education for them. Our public schools are succeeding in some ways and failing in many more, but above all, they are failing our children with emotional issues.

Carter does not deserve this more than other children. He was fortunate enough to be born into a family that has the ability and the willingness to help him in this way, but he is not more worthy.

I enjoyed Carter’s performance right down to my toenails. I bank my feelings on days like that; I need something to draw on in those long, dark days when Carter’s illness fills the world from horizon to horizon.

I would enjoy a day like that even more if I knew that every mother of a little boy or girl with problems like Carter’s got the same experience.

Carter will go to school tomorrow, and in spite of his severe emotional and mental issues, he will feel as safe, happy, and confident as it is possible for him to feel. I want that for every child.

This post originally appeared at Hopeful Parents.

Sad and Broken

Carter and I have enjoyed some time out of time – two weeks of puttering, chatting, playing, and watching an unhealthy amount of Little House on the Prairie. We stuck with LHOTP DVDs because the mid-term election campaign ads on TV leave me with the desire to run around to all the campaign headquarters in town and do some hard-core knee punching.

Really, are there no adults running for office this year? It’s all nanny nanny boo boo and did to, did not, did to, did not! on my TV these days.

Even in the midst of my internet sabbatical and self-imposed broadcast television limits, the news of the recent bullying-related suicides found its way to me. I am heartbroken, but even more than that, I am furious.

Is this the best we can do? Are we still so afraid of the differences among us that we need to sacrifice young people to the monster that is our bigotry?

When I wrote “The Lessons My Bullies Taught Me” last spring, I did so with a vague assumption that things have improved in most public schools when it comes to bullying. I guess because my kids haven’t had any of the problems that I had, and the schools they went to seemed so much more responsive than they had been when I went there, it was easy for me to believe that the world became enlightened between my childhood and now.

How wrong I was.

But I’m not the only one. Our cultural narrative about bullying has a false assumption in it, and that assumption is this: kids who are bullies are bad kids from bad families. If kids say or do bigoted things, their parents taught them that. If kids are unkind, rude, aggressive, or mean, their parents are, too. Nice kids from nice families aren’t bullies.

My bullies were nice girls from nice families. They weren’t troublemakers at school; they all went on to have successful lives.

Whatever they have learned at home, by the time they go to middle school, our wildly inconsistent and confusing culture, plus their peer relationships, are exerting enormous pressures on them. We help them develop a moral compass, but for teenagers, it’s hard to know when the needle is pointing in the right direction.

I don’t know why some kids become targets of bullies and others don’t. I’m not sure exactly what it was about me that drew my bullies’ attention, but I do know that any child can be bullied, and any child can be a bully.

Regardless of sexual orientation or gender identity; regardless of race or ethnicity; regardless of the size or shape of one’s body or the color of one’s skin; regardless of religious beliefs, personality quirks, tics, attractiveness, style of dress, or any other factor, the first guiding principle for living together in the world is this: everybody safe.

It’s time we acknowledged that children hurting other children (physically, emotionally, spiritually, or mentally) is not a rite of passage. It is not a normal part of childhood, or something that separates the men from the boys. Being bullied doesn’t toughen kids up; being a bully isn’t leadership. I don’t know exactly what the right response is (although, of course, I am full to the top of ideas), but I know for certain that ignoring the problem and expecting that children will work it out on their own isn’t it.

People can break, as Billy Lucas, Tyler Clementi, Asher Brown, Seth Walsh, and Raymond Chase have recently broken. I survived my bullying experience, but it didn’t enrich my life or build character or make me stronger; it wounded me, and it wounded at least one of my bullies.

I hope with all my heart that we will see some major changes in our schools, and soon, but in the meantime, I want to have a conversation about what we, as parents (or as adults recalling our own childhoods), can do to improve the school experience for our children. Has your child been bullied? What did you do? How did your parents protect you (or how do you wish they had protected you)? Have you (or will you) communicated with your kids about bullying? Has your child bullied? How did you respond? Were you a bully? Do you know why? What could your parents have done to stop you?

How do we keep everybody safe?

Smells Like Hope

The daytime temperatures here are still stretching into the nineties. We’re weeks away from shutting down the cooler, two months (at least) from firing up the furnace.

Yet there is a hint of fall in the air. The nights are cool; some of the leaves have begun to turn.

The children have all gone back to school.

I’ll pause here so that all who desire it can indulge in a moment of celebration.

I’ll pause some more so that those of you whose children haven’t gone back to school yet can weep quietly for a moment.

I’ll pause one last time so the homeschoolers in the crowd can chuckle at the rest of us, marking time as we do by the decisions of the people who make the school calendars. Those people? Less intelligent than your average beer-can-eating goat.

I hope that those of you who do not have children, or whose children are grown, took advantage of one of the previous pauses to do whatever it is that you needed to do vis-à-vis: school schedules and summer.

I was indulging myself in my standard rant in favor of year-round schools recently and my conversation partner spoke up: It is nice, though, to have enough time for extended vacations. We usually travel at least eight weeks of every summer.

Stupid me! I almost forgot that most people take extended world-tour vacations during the summers!

Where was I?

Fall. Oh, yes.

Fall makes me nostalgic. Everything slows down; there’s a pause between the activity of summer and the frenzy of the holidays and for me? It’s time to remember.

That’s not always a good thing.

The start of a new school year? Full of promise. I’ll do all my work! I’ll never fall behind on my reading! I’ll have friends this year! I’ll be more confident! No one will pick on me!

Wrong on all counts through eighth grade. Wrong on almost all counts through the rest of the grades, except the friendlessness and the being-picked-on finally stopped.

That?

That was a big relief. The biggest.

Every year, in spite of mounting evidence that I was wrong, that I would never keep up with my reading and have friends and be confident, I was filled with anticipation that things would be better.

Freshly sharpened pencils smell like hope.

I spent the afternoon with Abbie yesterday. She started her freshman year of high school two weeks ago. She needs me to help her with her math; she asked me for advice in mediating an argument between two of her friends. In general? She is content. Her friends are lovely girls who support each other.

Jacob is a sophomore at the high school and he is already settled in his niche. I could have predicted the crowd with which he would run when he was still a toddler; that boy is a born music and drama geek. Although he is as introverted as I am, he has friends. He struggles with his schoolwork, but he is not afraid to ask for help.

I feel terribly sad when I remember the disappointments of fall, the girls with whom I was incapable of making friends, the questions I was too afraid to ask, the lunches I skipped because I had no friends with whom to sit. But maybe, if I had not experienced all of that pain, I would not understand this joy. Jacob and Abbie know that no one has the right to treat them badly and so they don’t allow it. If anyone bothers their friends, they step in to help.

I know that they are far from perfect; children of that age tend to look out for themselves and their closest friends. They’re unlikely to take social risks for strangers. They know my story; they know one of my fondest wishes is for them to be champions of the underdog, but I’m not naïve.

I do know, however, that they have never actively bullied other children. They would have to be stupid to take a risk like that considering the promise I made to them.

My kids know that, the first time I hear from the school that one of them is bullying another child, I will be their all-day escort at school.

I will wear a giant purple clown wig.

Also, as I require a great deal of all-day comfort, I will take my big black desk chair with me and wheel it from classroom to classroom.

Yes, my friends, I take this bullying problem very seriously.

I hope that you will, too. All of our children deserve to be safe at school this year.

A Steady Diet of Drano and Gravel

Do you know what’s making me very happy right now? Newspapers and television and magazines have backed off on the headlines that say,

American Children are Overmedicated by Selfish Parents for Their Own Convenience and American Childhood Is on a Highway to Hell and We Are All Doomed Because Parents Are Lazy and Have No Values and the Pharmaceutical Industry Has Duped Them and We’re All Going to DIE!!!

Or something like that.

Much of the blogosphere is still abuzz on the topic, but the mainstream media, at least, has backed away from the issue.

That? That’s a good thing, because no one likes to turn on the TV to be vilified by people who know little and care even less.

Know what the problem is? People think they know lots and lots of shit. Shit they don’t know.

Back up, before I go in a circle.

In the years between my divorce and my remarriage, I attended a large Presbyterian church. The only reason that church worked for me was because I was part of a weekly Bible study populated by open-minded people who knew how to disagree respectfully. The church itself? Quite conservative in some ways (ultimately the reason we left, but that’s a story for another time), but I had my niche and I was happy there.

I tried a new Sunday school class one week and the discussion turned to divorce. The class moderator closed the hour with a little impromptu speech wherein he said, “Every marriage has hard times! My marriage has had hard times, and I’ve even considered getting out, but that’s like giving up. If my wife and I can stay married after all we’ve been through, I don’t think there’s any excuse for a divorce.”

Ahem.

I have no idea what that man’s issues were; no idea what his marriage was like or why he had considered divorce. What I do know is that he suffered from a very serious disease which I have coined (Now! Here! Today! Aren’t you glad you’re witnessing this momentous event?) Severe Lack of Imagination, or SLI.

Some people cannot imagine that anyone, anywhere, at any time, has experienced something different (or experienced the same thing differently) than they have. If, for our SLI sufferer, he has experienced what seems to him to be the worst possible problem that a marriage could have, and he didn’t get a divorce than why would anyone ever get a divorce? People who get divorces must be lazy people who have no values and don’t care about marriage or family at all. They probably litter and kick puppies, too.

And of course I did make a mistake, but I made it on my wedding day. The day Robert said he was leaving and I didn’t try to stop him? No mistakes anywhere in that day. None.

Back to the people who are trying to raise the alarm about kids on psychotropic medicines and the lazystupidselfish parents who are creating a crisis of apocalyptic proportions, first? Get a fucking grip.

My God, when I was watching and reading some of the coverage about kids and meds, you’d think there were large groups of parents feeding their kids a steady diet of Drano and gravel.

And why am I writing about this now, when I just said the media had backed off on the issue? Because these attitudes are ingrained in our culture and continue to drive stigma. Many (most?) people continue to believe this stuff. I’ve seen a look of shock cross people’s faces when I tell them that my child takes psychotropic medications. People who know me, who know that I am anything but stupid, that my laziness does have its limits, have to adjust their paradigm to account for all of it.

Cognitive dissonance! Oh, shit, I like her, but she’s one of those people. No, wait, she can’t be. She’s an exception. Yes, that’s it! She is one of the very few, the extremely rare, the thoughtful parent who has a child who is actually ill. Phew. Paradigm restored.

You think I’m exaggerating? No. People have actually said some variation of this to me, “Yes, but you’re the exception. Most people give their kids ritalin just to shut them up.”

Seriously.

The arguments, as I understand them, with answers (duh!):

  1. Parents are medicating perfectly normal children for their own convenience! Kids have energy; that’s not ADHD! We’re raising a nation of zombies.
  2. Yes, kids have energy. Some kids have lots of energy. And a few kids are miserable because of their inability to do stuff. You have to slow down to do stuff. Kids with severe ADHD don’t really do anything. The perception seems to be that, if we would just let kids with ADHD be who they are, they would be just fine.

    This is a symptom of SLI. You have seen a very energetic child. That child was very energetic but fine. Therefore, all children who are very energetic are fine.

    No. Just, no. For one thing, hyperactivity is only one of the symptoms of ADHD, and isn’t even present in every case of the disorder. For another thing, kids with ADHD suffer. Carter (who has, among many other things, a whopper of a case of ADHD) has never learned how to properly play. He doesn’t have the focus necessary to do anything, even his favorite things, for longer than a few minutes. Left untreated, he is not a happy kid with an abundance of energy. He is a miserable dervish.

    And for people who think that ADHD is no big deal, sometime I will tell you about how it killed a 13 year old boy who I loved.

  3. Parents want their kids to be perfect. Not every child can be a superstar! Parents are trying to force their kids to be something they’re not with medications.
  4. You just need to come on over to my house because your SLI is tripping you up again. We’re pretty much the opposite of overachievers. We have four children; one of them is mentally ill. I want to keep the one with a mental illness alive. Ivy League superstardom is not a factor anywhere in that equation. If this phenomenon exists, I’ve never seen it. Not in the clinic waiting rooms where worried parents wait with their lists of questions clutched in their hands; not at my support group where we try hard to support each other through life-and-death crises; not online where I receive a heartbreaking stream of messages about unwell children from their broken hearted parents.

  5. The pharmaceutical companies have fooled parents into thinking their children have illnesses that don’t even exist. Show me blood tests, brain scans, anything that proves there’s a real problem. They don’t exist. Know why? It isn’t real. Real diseases have lab tests.
  6. There is an underlying concern here that I agree with: the pharmaceutical companies are more concerned with profits than with anything else. And yes, they are. They are not humanitarian organizations, and the FDA is not doing a good enough job of monitoring their research or their marketing. All true. While I want more and better research, more and better protections, and a great deal more transparency in the whole process, it is also true that big, bad pharma continues to produce drugs that save lives.

    No doctor ever tried to force us to medicate our child. Ever. I have not heard of that happening to any of the hundreds (probably thousands, by now) of people I have spoken to who are raising a child with mental health issues. Does it happen? Perhaps, but I am in no way convinced that this is a widespread problem. People who successfully complete medical school have more lucrative options than psychiatry; the psychiatrists I know didn’t choose their specialty because they want to mess with people’s minds and shove medicines at them for shits and giggles.

    But since I don’t have SLI myself, I can, in fact, imagine that a person might do such a thing and so I use my (not even a little bit fooled) brain to consider the options. I know how to do research on the doctors, the drugs, and the illness. I go to the university library and read the peer-reviewed research. I never drink the Kool-Aid, so easy with that wide brush, Cowboy.

    And finally, the lab test issue. I’m stumped by this one. I guess I should be angry that someone invented microscopes because before we could see cancer cells, there was no cancer. Or something like that.

    There’s no lab test for SIDS, either, but I’m pretty sure that horror exists, and so does mental illness. We are not gods. Our confirmation of a thing’s existence is not necessary for a thing to be.

  7. There are other solutions. Even if a child has a real mental health issue, that child should get therapy, not medicine! Parents think medicine is a magic bullet that’s going to solve everything!
  8. I would like to meet these parents, who believe that medicine is the only thing that’s necessary for the treatment of a serious mental health issue. I am not that parent. I don’t know any parents who believe that medicine is anything other than one piece among many in an effective treatment plan. We have made use of a variety of services – traditional talk therapy, play therapy, a specialized school environment, in-home behavioral management services, occupational therapy, to name just a few.

    Just as medication is not the be-all-and-end-all for treatment, neither is any therapy. Behavioral interventions have limits, and can take a very long time. Time that my child doesn’t have.

    There are some states of mind that are so far removed from reality, so dangerous, or so painful that it is cruel to deny the relief that medications brings. The bottom line for us is this: our child suffers if we do not use medicine to treat his illness.

  9. Psychotropic meds are unproven and dangerous! No child should be on these medicines! (This argument is particularly vehement when the discussion centers on antipsychotic medications.)
  10. This one? I totally agree with this one. Likewise, no child should ever be on chemotherapy. No child should have to be injected with insulin. No child should undergo surgery.

    If you come from an assumption that the illness is not real, then of course the risks of medicine make no sense at all. In fact, taking those risks seems downright criminal.

    If, on the other hand, you understand that a child in the grip of a mental illness may be as likely to die or experience permanently disabling consequences as a child with cancer, diabetes, or any of a thousand other illnesses, than you know that we are not taking risks as much as we are balancing risks.

  11. Parents who medicate their children are robbing them of a normal childhood!
  12. No, the illness did that. The illness is the villain here. All I want for my child is a happy life. I want him to ride his bike and learn to read and annoy me with fart jokes at the dinner table. I want the most serious medical episode of his childhood to be a broken arm or appendicitis.

    Yes, my child has been robbed.

    I don’t doubt that part for one minute.