The Crystal Ball She Wished She’d Had

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

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

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

Good to know.

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

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

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

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

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

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

An Eternal Multitude of Despondency

Instead of letting me go in an ambulance, my parents drove all the way from Albuquerque, New Mexico to Prescott, Arizona to take me from the tiny regional medical center where I had been for nine days to the much larger hospital in Phoenix.

Instead of letting me go in an ambulance, my parents drove from Albuquerque to Prescott, Arizona to take me from the tiny regional medical center where I had been for nine days to the much larger hospital in Phoenix.

When they arrived to collect me, I was furious because I was not dead yet, and I was furious at my parents because one time they had wanted to have a baby, and that baby was me. Horrible, miserable, disappointing, useless me.

Somewhere at the back of my skull where depression had driven my better self, I could hear a murmur of words that said, ssssh, be nice. They love you. This is hard for them.

My parents drove me from the hospital to the house where I had been living and gathered my things. We filled my suitcases with the paperback novels I read until I’d gotten too sick to do anything but stare at Green Acres and Make Room for Daddy on Nick at Nite while I sharpened and re-sharpened every knife in the house. My mom put my hamper in the minivan last, telling me she’d do my laundry and bring the clothes to me at the hospital.

I was in the middle seat of our Volkswagen Vanagon while my mom drove the steep, twisting roads out of the mountains and into the pestilential heat of Phoenix. We paused for a funeral procession and I looked at the hearse and I hated its dead passenger with a hot red rage because how dare that asshole get a chance to die when I could not have mine? How could the universe force me to continue to draw breath when so many were allowed to make their escape?

Something broke behind my face, and I don’t know if it was sitting in that seat in the van where I had sat so often as a child, or if it was the presence of my parents (who on that day I hated and loved in equal degree), or if the little green and white capsules (“This drug is so new you’ll always be able to tell people you were one of the first to take it!” chirped the psychiatrist who prescribed it, as if I didn’t have every intention of dying before I ever told anyone anything ever again.) were chiseling away at the deadness in me, but I cried.

I laid down on the brown van seat and bawled. I used up all the tissues in the car, and then the roll of paper towels my parents always carry when they travel. Finally, I crawled into the back to find one of the little travel blankets my mom made when I was twelve and I cried into it and there seemed no end to the tears and snot and suffocating misery. There was no relief in those tears, no purifying release, just more: an eternal multitude of despondency.

My mom parked the car and my dad opened the sliding door. He unbuckled my seatbelt and I walked under his arm, my face covered, and he guided me until I was in a chair in an office with a woman who asked questions. I hated that woman, this intrusive, bossy crab who wanted me to answer her stupid question and sign her ridiculous papers. “I’m sorry, Mr and Mrs Jones, but she’s 18. She has to answer herself,” and she was just another prying, arrogant ass who wanted to stop me from checking the fuck out of this life.

We walked again, me still under my dad’s arm, my swollen, soggy face hidden, and there was a loud clunk and I was seated in a new chair. I cried on. My face was as hot and raw as a knee that has been skinned on pavement after a bad spill from a bicycle, and still I cried on. I leaned into my dad while someone put a tourniquet on my arm and drew blood  and someone said, “Excuse me. I need to use the phone.”

I looked up. In front of me, a blonde woman no bigger than a ten-year-old wearing jeans and a housecoat, and behind her, across the room, a mustard-yellow steel door. “We’re here? We’re already here?” I asked, panicked. I was locked in.

“You gonna move or what?” asked housecoat woman, and my mom guided me to a different chair so I wasn’t sitting in front of the row of pay phones on the wall.

“Can’t I come to the hotel with you guys?” I asked my parents. “Just for tonight. I’ll come back tomorrow. I promise! Just take me with you for one night, please? I won’t do anything. I promise. I really promise.”

My dad squeezed my hand. “We have to go now. You need to stay here but we’ll come visit tomorrow.” They each hugged me and I don’t know if I hugged them back.

That night, a nurse gave me a Benadryl to help me sleep and my insomnia snickered at that drug and I spent the night sitting in the day room with my 1:1 aide (the person charged with staring at me every minute lest I find some way to hurt myself in this bladeless, beltless, edgeless, glassless place). The aide lit my cigarettes one after another after another while I stared at the console television with its familiar succession of elderly shows on Nick at Nite. She asked me questions as if I was a child she was humoring at a friend’s party: Do you have any sisters or brothers? Do you like dogs? What was your favorite subject in school? I did not scream at her shut up shut up shutupshutupshutup and eventually she opened one of the magazines in her lap and seemed to be reading it.

The days were long, punctuated by meals we ate in the smoky day room and the counting of returned plastic cutlery after. There was a tray of graham crackers and apple juice from which we could snack between meals, and down the long main hall was a man who was either bedridden or in restraints who screamed curse words at the staff all day until evening when they gave him medicine that made him sleep and we, patients and staff alike, breathed a collective sigh of relief. On the rare occasion I was able to sleep, my roommate woke me to share the triumphant news of her successful vanquishment of ceiling demons. “They would have eaten everyone,” she told me, and I wished she would let them.

My parents drove to Prescott to pick up my car, then my dad drove home in our van while my mom stayed on in Phoenix for a few days. She brought me my clean clothes. She had gotten all the blood off the left leg of my khaki pants and I wished she’d just thrown them away but maybe she needed to scrub and scrub and scrub until it was gone. She couldn’t scrub my hand the way she’d scrubbed the pants and I poked and pulled on the wounds there but they didn’t hurt much anymore.

I was relentlessly cajoled. I was running a low fever and my blood work showed I was dehydrated so the staff brought me cup after cup of soda, tea, and water that I would not drink. They threatened that I would not be allowed off the unit if I didn’t eat but all the food tasted like sand. All the drinks felt like glass in my mouth. I sat in a chair in the day room and listened to my thoughts pummel me and I hoped I would die in my sleep and I smoked my cigarettes and when they brought that green and white pill in a tiny paper cup I swallowed it.

There was a doctor with an accent so thick I couldn’t understand more than about half of what he said. He began to give me diagnoses, one after another, stacking and shuffling them, as if hanging enough words and codes on my emotional reality would cause a spontaneous healing. “Please just give me some medicine to make me sleep,” I said.

“You already have catatonic signs and symptoms,” he said. “A sedative will only make you worse. Don’t worry; when you are tired enough, your body will sleep.”

I shuffled out of his office and my aide took me back down the mustard-yellow hall, through the mustard-yellow door, and seated me in a mustard-yellow chair. She lit my cigarettes until shift change when someone new came to light my cigarettes. I sat sleepless through that night and the next day the doctor said, “You’re a really tough case. You’ll probably need to be in the hospital for a very long time.”

“Please just give me some sleep medicine,” I said, and he refused.

“You’re a tough case for sure,” he said again.

One night, the charge nurse took me to the courtyard with her. She lit a cigarette for me and one for herself and said, “I hear you want to die. Why would you want that? You’re young and pretty and you have everything going for you! I wish I could be young again. I wouldn’t waste it in a place like this.”

I smoked my cigarette and held my beltless robe closed and I did not scream at her shut up shut up shutupshutupshutup. I could not understand why no one but me could see that I was already dead and it was only my stupid body that was keeping me trapped like a ghost among living people.

The nurses told me when to shower and I dutifully soaped and rinsed, my aide watching all the time while the water screamed insults and threats at me. I got out of the shower and lay in a soggy, naked heap on the bed, overwhelmed and unable to decide what clothes to wear. The aide sighed and brought me clean underwear and socks, then put two hospital gowns on me, one open at the back and the other open at the front.

I shuffled back to the day room and smoked cigarettes while the other patients swirled around me, interacting with their hallucinations, arguing over the TV channel, demanding drugs or food or freedom from nurses, aides, and other patients. The man down the long hall howled, hurling his familiar insults in his familiar way and I hoped that soon he would get his haldol or thorazine or whatever they gave to shut him up.

A nurse brought me a cup of orange soda and set it down next to my ashtray. “Drink this,” she said. “Eventually we’ll have to give you an IV if you don’t drink something. How do you think your parents would like that? How can you do this to them? Maybe I’ll take your cigarettes away until you drink something. Maybe I’ll even take your cigarettes away until you speak. Would you like that? No cigarettes as long as you keep sitting there like a statue?”

“Fuck you,” I said.

She looked slapped. “Fine. Drink your soda so I don’t have to call the doctor again.”

“Fuck you,” I repeated.

The nurse walked away. The aide looked at me over her newspaper and chuckled a little. “You might get well after all,” she said.

I drank the soda.

Sanctimonious Concern

There are times to call police, but there are also times to speak our concerns to each other, and there are times to check our 21st century, first-world paranoia and let it go.

In 1994, I lived in a rental house not much bigger than a breadbox with my then-husband and our baby. Next door was an even smaller rental house, barely the size of a garage.

The young woman (and I do mean young; I was 23 and she was even younger) who lived in that tiny house had a two-year-old son who seemed to perpetually surprise his mother with his presence. We chatted occasionally in our common backyard and I was left with the impression that she was flummoxed by the babyness of him. Now that he spoke and walked upright, he still hadn’t become a reasonable person, and that startled her.

One afternoon when my then-husband came in from work, he said, “You have to call CYFD on that girl next door. Her kid is playing in the car.”

I went out front and sure enough, there was my neighbor’s two-year-old son, sitting in the driver’s seat of her car, turning the wheel back and forth and making those driving noises that come pre-installed on some children. I scooped him up and carried him into the house and found his mother in the kitchen, cooking dinner.

“He was playing in the car,” I told her. “That’s not safe. Actually, he really shouldn’t be out there without someone to watch him since there’s no fence.”

“Oh,” she said, looking concerned. “I thought it would be OK. I told him to stay in the yard.”

“He’s too little,” I said, “and a car isn’t a safe place to play. He could accidentally release the brake, or he could get locked in there.”

She was embarrassed. “I’m sorry,” she said, apologizing because she felt bad even though she hadn’t hurt me.

“Well, he’s fine, and it’s all good. Just remember to keep the car locked, and let me know if you need help watching him!”

I went back to my house, praying that I had done the right thing. Maybe she did need professional guidance. She seemed so profoundly clueless. On the other hand, her son was well-fed, happy, and had never had any injuries that I’d seen. Our houses were very close and I never heard any crying beyond what’s normal for a child that small.

After our conversation, I never saw my neighbor’s son outside without his mother’s supervision again and I became more and more comfortable with my decision.

Across my adult years, I’ve had lots of interaction with the child protection system, mostly as a mandated reporter but also as a victim of malicious reporting. I’m also a parent and an observer of trends and what I’ve noticed is this: people are much quicker than they used to be to call police about suspected child mistreatment.

Is that good? Yes and no. I’m happy to wave good-bye to the days when what happened to children was nobody’s business but those children’s parents. Kids whose parents hurt them or fail to keep them safe deserve better, and we need a system with the power to intervene on their behalf.

On the other hand, 911 is no one’s personal nuisance reporting number, and child protective services is not the place to call when there is mild concern, or when a parent does something that doesn’t seem like the best possible decision. I think social media drives some of this because I’ve seen (haven’t we all seen?) ridiculous statements like parents who feed their kids junk food are ruining those children’s health and should have them taken away, or women who have planned c-sections are abusive, on and on. Every parenting choice that seems less-than-ideal to the observer gets the “abusive” placard hung around its neck.

I remembered all my interactions with cops and child protective services yesterday, when I read this piece at Salon about a mother who left her child in the car for a few minutes on a 50 degree day while she ran into a store to buy that child a pair of headphones. The legal problems caused by the bystander who took video of her car and her child and subsequently called police have dominated her family’s life for two years.

This represents a major cultural shift that I’ve witnessed in my 20+ years as a parent. When my eldest children were very young, in the mid-90s, I didn’t think much of leaving my children in the car under the conditions that it was not hot out, I would be no more than a couple minutes, and I could see my car from inside the store. By the mid-2000s, when my youngest son was a toddler and pre-schooler, I felt much more anxious about doing that. I was not more concerned about kidnapping, or someone stealing my car with my child inside, or any of the supposed risks that always taking my children with me are meant to ameliorate. No, I became worried about a bystander who might call the police about “neglect.”

I did once call the police about a child left alone in a car. It was nearly 100 degrees and I stood ready to smash a window if the baby (who was sweaty, but was also laughing at the goofy faces I was making at her through the window) seemed in distress. Thankfully the police arrived less than a minute after I called and they popped the lock and put the baby in an air conditioned police car until an ambulance arrived.

There are times to call police, but there are also times to speak our concerns to each other, and there are times to check our 21st century, first-world paranoia and let it go. The police, courts, and child protection agencies really do have better things to do than indulge our sanctimonious concern over how other people are parenting. Resources are limited and children who are being beaten, molested, or starved, need those resources devoted to them. There are children out there who are being left alone for hours, not minutes.

When we see a child in immediate danger, of course we should call 911, and when we suspect genuinely neglectful or abusive behavior, it’s time to notify child protective services. In the meantime, I think we all need to get a grip, because most of the kids are OK, and most of the parents, fallible though we are, are doing just fine.

You Chose

If only we were half as powerful as we believe ourselves to be.

You took no medications and consumed nothing artificial during pregnancy. Your baby is pure and the least a mother can do is sacrifice her comfort for 9 months.

You consulted with your health care provider during pregnancy and chose to continue your anti-depressant. Your baby needs to have a mother who is well and healthy.

You chose cautiously. Nothing bad is ever going to happen to your child.

*          *          *

You chose disposable diapers because your baby needs your attention. How can you stay focused on her if you’re scraping poop and washing diapers?

You chose cloth because no baby of yours is going to sit in some a chemical-filled, disposable paper “garment.”

You chose elimination communication because your baby deserves better than to sit in his own waste.

You chose carefully. Nothing bad is ever going to happen to your child.

*          *          *

Your baby slept in her own crib right from the beginning. Babies need to learn to self-soothe, to be independent.

You co-slept, your baby nestled between his parents all night long. Babies are small and vulnerable and need their parents’ presence so they know they are safe in the world.

You chose thoughtfully. Nothing bad is ever going to happen to your child.

*          *          *

Your toddler rode in a stroller or wore a harness until he was four. No child of yours is going to get lost or hit by a car because her parents didn’t restrain her properly.

Your toddler was free to walk whenever he wanted. No child of yours is going to have his freedom curtailed because his parents didn’t keep their attention focused on him.

You chose judiciously. Nothing bad is ever going to happen to your child.

*          *          *

You took your family to church every week because children should be grounded in a faith tradition so they have a moral compass and a sense of connection.

You avoided organized religion because children should be allowed to explore a variety of world views and choose faith (or not) according to their preferences.

You chose scrupulously. Nothing bad is ever going to happen to your child.

*          *          *

You were a firm disciplinarian with your children. You had high expectations and you issued unpleasant consequences when your children fell short.

You avoided all forms of punishment with your children, preferring them to learn from the natural consequences of their behavior.

You chose conscientiously. Nothing bad is ever going to happen to your child.

*          *          *

You taught your child everything about sex. You taught him about protection, pregnancy prevention, and consent. You taught him about respect, kindness, and risk.

You taught your child that sex is something she absolutely may not even consider until after she is married. You taught her that sex is sacred and that she must protect her purity no matter what.

You chose morally. Nothing bad is ever going to happen to your child.

*          *          *

You kept your children at home, arranging for all their playdates to be supervised by you. You spoke to their teachers often, visited their classrooms, and joined them on all their outings.

You let your kids run the neighborhood with friends and sent them to the neighborhood school. They went to the park, the swimming pool, and the movies accompanied by people their own age.

You chose prudently. Nothing bad is ever going to happen to your child.

*          *          *

You saw a person at the grocery store, or heard a story on the TV news, or read about a tragedy on the internet, and thank God nothing like that is ever going to happen to your child.

If only his parents had been moral. If only her mom was conscientious. If only his dad had been more careful.

*          *          *

If only we were half as powerful as we believe ourselves to be before something bad happens to our children.

The Trajectory

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

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

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

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

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

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

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

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

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

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

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

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

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