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.

For Kelly Thomas

Kelly Thomas was beat and beat and beat by Fullerton police officers on July 5, 2011 and while the cops beat him he cried for his dad and God and his mom and they beat him some more until he stopped moving.

I’m compelled to put some words here in honor of Kelly Thomas, some kind of expression of solidarity with his family. I want to express my outrage at yesterday’s acquittal of the men who murdered him, but my feelings are big and language seems too small. I went to sleep last night thinking of the Thomas family, woke up this morning thinking of him and praying a prayer about the men who killed Kelly that I’m pretty sure God doesn’t honor.

So I will tell you this small sliver, this little piece, and it is this: Kelly Thomas is Kelly Thomas. He is described in the news as a homeless man or a mentally ill man or a man with schizophrenia. Those things, those descriptors, are all true, but Kelly Thomas was Kelly Thomas and he was a person and he was beloved of his family and those things are also true.

The surveillance video shows that Kelly Thomas was beat and beat and beat by Fullerton police officers on July 5, 2011 and while the cops beat him he cried for his dad and God and his mom and they beat him some more until he stopped moving. When Kelly was finally unconscious, lying on the hot pavement, handcuffed, his blood pooling around him, the police officers began the anxious process of creating a suitable narrative. “He was really fighting,” one says. “He was definitely on something,” says another. Yes, yes, true. A person in the process of being beaten to death will fight. Terror is a powerful drug.

And they—those police officers, all six of them who got on top of, beat, pistol whipped, tased, and ultimately murdered a terrified, unarmed man—slept in their beds last night. They kissed their children goodnight.

The last time Ron and Cathy Thomas kissed their son goodnight was July 10, 2011, when they removed him from life support.

Think about that, because I can’t stop thinking about it: their babylove, the child for whom Cathy and Ron Thomas stayed up too late on Christmas Eve wrapping presents, and who they taught to ride a bike, who they took to the doctor when he had an earache and later, when he had other, more mysterious symptoms, and they fought and struggled and loved and tried to rescue him when schizophrenia grabbed him and wrestled him away from them and it was they who had to make the choice. It was they who signed the papers that authorized the hospital to turn off the machines. Mom and Dad, who couldn’t protect their son, who will live with the image of his devastated and dying body forever. They, who sat in the courtroom every day, listened to the audio of their son crying out for them, and finally listened to the acquittal of the men who hurt him unto death.

I kissed my own son goodnight, too. My little boy, who is terrified of anyone he doesn’t know touching him, who sometimes acts in inexplicable and frightening ways, who often doesn’t understand what is happening around him. My boy, whose illness sometimes makes him seem weird and unlikeable…how, how, how to make the world understand that he is my beloved son? That we, the parents, siblings, spouses, children, and friends of people with mental illness know them to be people? They are not the monsters in the movies or the villains in TV shows or amusing pop-culture characters but people.

Kelly Thomas was not disposable. He deserved so much better. His family deserved better, and all of us who live with or love someone with severe mental illness deserve better.

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

Please visit this link to sign a petition to the federal government, requesting they investigate the death of Kelly Thomas.

This Is How We Dare

We dare because it is always OK to ask for what we need. Always.

You probably saw the hateful pink letter this week, the one addressed and delivered to the family of Max Begley of Ontario (If you haven’t read it, please use this link to read it. I don’t care to repost it here.). The social media outcry has been huge because the letter represents the worst of the attitudes to which people with disabilities are subject. People read that letter and were shocked; how could anyone suggest to a mother that her child be euthanized? A mother herself, no less? Who says that about a child?

And yet, I remember the time I was at the grocery and there was a man there who had Tourette’s syndrome or a similar disorder. Every few seconds, he vocalized loudly, and I heard a woman say under her breath, “Freaky retards should stay home.” In the meantime, my own son, eight at the time, was at home with his dad, flapping and swinging his way through an elaborate stereotypy that dominated his body for months.

There was the time Carter and I were at the post office and a stranger, observing Carter’s behavior, called him a brain-damaged brat.

Thousands of times, I have turned on the TV after a mass shooting or a celebrity meltdown to hear talking heads discuss the mentally ill and have resolved, again, to protect Carter from knowing that the words mental illness apply to him as long as I possibly can.

And then, there were the negative comments on my recent post Dear People Who Do Not Have a Child With Disabilities, almost all of which asked (demanded) some version of how dare you?

To sum up: some people want to know, how dare you ask the world to speak to you in a new way? They mean well; this is just the way life is! How dare you?

To sum up the anonymous letter sent to Max Begley’s family: how dare you inflict your son on the world?

To sum up the comment from the woman in the grocery: how dare he be out here in the world where there are other people who might see and hear him?

How dare we?

Why are parents of disabled children so incredibly self centered and self focused? They want everyone to bend over backwards to accommodate them and their kid. Don’t you know that EVERYONE has their battles? It’s not all about you, all the time! How often do you reach out to your friends to find out how they are doing? How often do you even know what is going on in anyone elses’ [sic] life except your own?

Asking for what we need is not an indication of self-centeredness or selfishness. Asking for what we need is healthy. 

Each of us, whether we have a child with a disability or a typical child, has our own set of issues to deal with on a daily basis. Some, admittedly, are more complex than others. But, again, I stress; you can either let all that is thrown at you drag you down and OWN YOU, or you can wrestle your life back and OWN IT. The choice remains yours.

Asking for what we need is not weakness. Asking for what we need is brave.

 Complaining about it and attacking those in society that make attempts to understand my situation by asking questions, or comments like the “What You Say…” is counterproductive. It only serves to make the situation worse and as so many have pointed out on this blog, who among us needs more to fret over and get upset about, not me.

Asking for what we need is not attacking others. Asking for what we need builds relationships.

Just don’t assume that ALL parents of disabled children or people with disabilities are that angry and negative all the time. Most of us get over it and get on with our lives.

Asking for what we need is not a sign of anger or negativity. Asking for what we need is proactive.

I also feel that if you can identify that a person is well-meaning, there is no need to make other assumptions about they are saying. Trying to be understanding is a two way street.

Asking for what we need doesn’t mean we think that other people are bad or wrong. Sharing information is sometimes part of asking for what we need.

All I got from this is that it is better to ignore or show no support to you or any mom with a child that has disabilities so that I don’t offend you or them. Isn’t it worth looking past the words that were said and appreciate the effort of support and even care towards you and your family. 

Asking for what we need is not criticism. Asking for what we need is an invitation to deeper relationship.

Sounds like you’d rather not talk to people who don’t have a child with disabilities. Shame on them for trying to be supportive or positive? Maybe they should just tell you, “Wow, it must suck to have a kid like that.” Maybe you could print out a list of things that are acceptable for them to say to you so you won’t be upset by them trying to say a nice thing and messing it up.

Asking for what we need is not shutting people out. Asking for what we need is a request for healthier community and an effort on our part to build that community.

So even if people are trying to be nice, it’s THEIR fault that YOU interpret their comments a different way than they were intended. So basically everyone should just shut up and not say anything because even the people who are being nice will still be villified [sic] in your mind.

Asking for what we need is neither hate nor vilification. Asking for what we need is an appeal to our common humanity.

 It comes across a little bitter.

Asking for what we need is not bitter. Asking for what we need is hopeful

I think it’s important to remember, though, that in MOST cases, these people are trying to be helpful.

Asking for what we need is not ignorance. Asking for what we need is about believing the best of people.

We dare to ask for what we and our loved ones need because people with disabilities are, first, people. We are humans who have lives to live. We need to go places and do things, just like you. We need sensitivity and kindness, just like everyone else.

We dare because it is always OK to ask for what we need. Always. Some people don’t want to meet our needs, and it is still good and healthy for us to ask.

Dear People Who Do Not Have a Child With Disabilities…

I have yet to meet a parent of a child with disabilities who hasn’t heard a whole lot of nonsense from people who never intended to speak nonsense.

I have yet to meet a parent of a child with disabilities who hasn’t heard a whole lot of nonsense from people who never intended to speak nonsense.

I’m not speaking here of the jerks, the people who say things intended to be mean. Those people are heartless and lost and bummer for them because how sad, to live in a world that has so little kindness in it. I’m talking about ordinary people, the well-meaning man at the grocery store, the group of friendly acquaintances at church, and even the best friends who, when face-to-face with the parent of a child with disabilities, don’t know what to say.

If I sound at all bitter anywhere here, I apologize. I have no high-horse on which I may stand. I said some of these things before I became a parent of a child with disabilities.

Any bitterness that comes through is only a result of the incomplete job I have done so far in letting go of the anger and disappointment that engulfed me in Carter’s early years. If someone had told me these things before I had Carter, I would have tried very hard to listen and learn, and I know that when I said these things I meant no harm. In fact, I believed I was helping.

With those caveats in mind, here is a long list of things we parents of kids with mental/emotional/social issues hear often and that hurt us, and a much shorter list of things that I wish I had heard back in the years when life was all crisis, all the time.

What you said: God never gives us more than we can handle.

What we heard: You’re fine. Quit whining.

We’re not fine. Also, it is very dangerous to bring God into conversation with a person whose faith you don’t know intimately (and sometimes even then). We bring God to these conversations by bringing kindness. We bring God by seeing, hearing, and connecting.

What you said: He seems fine to me! Or, All kids do that!

What we heard: You are a very dramatic person and you should get over yourself. Also, you are very likely a huge liar.

If you said this to me now, I would raise my left eyebrow to you and make a mental note never to discuss anything related to Carter again. Back when I was in agony pretty much all the time, it was like being punched in the guts. It didn’t help that I heard it often. Carter was occasionally distracted from his incessant wailing by new surroundings, new faces, and especially fluorescent lighting. Plus, I rarely left the house unless he was at his best, so people heard my descriptions of a baby who cried hours and hours on end while said baby looked around from his perch in the sling in which I wore him.

Here is a good rule for all of us when we are talking to a person in pain: do not contradict. Even if the person you’re talking to seems to be completely full of crap, acknowledge the pain. See the person in front of you, because the person matters infinitely more than the facts, and this isn’t a courtroom. Even if I had been radically exaggerating the extent of Carter’s crying, I was in pain. Even if, as he got older, I was wildly overstating the rages, the migraines, the constipation, the sleep disorder, and the despondency of his depressions, my pain was real.

What you said: You must be a very special parent for God to give you such a special child.

What we heard: We are fundamentally different. I’m not even going to try to understand you.

When I first heard this, I would imagine God sitting at a school desk with a paper in front of him, just like the worksheets we used to get when we were in elementary school. There would be a list of babies on the left and a list of parents on the right. God would draw a line from the most difficult baby to the strongest parent, then second most difficult to second strongest, etc. In my imagination, a dog (God loves dogs) comes bounding into the misty, ephemeral scene, distracts God, and oops! God sent the wrong baby to those wacky Joneses!

There was an accident, and the accident broke Carter’s brain. I don’t know why, but I know I’m not special, and I need you to see and hear me and my struggle.

What you said: You are an angel! I could never do what you’re doing.

What we heard: Hey, sounds tough. What a bummer. It’s a good thing you can totally handle it and you don’t need anything from me!

Yes, you could handle it. The alternative is…what? It’s your kid. You handle it. Not with any grace or style (no points for those things, anyhow), but you just do. Ordinary you, ordinary me.

We aren’t different, we parents of special needs kids. I promise I’m just like you. I kick ass at some parts of parenting, and I’m lousy at other parts, and I’m very ordinary at most of it. You’d be horrified if you heard a group of parents of kids with issues like Carter’s talking amongst ourselves; we use gallows humor and and talk in ways we know would alienate you, and we are very un-angel-like. We are deeply angry sometimes. Wounded. Broken.

But if you come to us and say, hey, I’m in trouble, I have a kid with problems and I think I belong in your club, we will gather you into our circle so fast you won’t quite know what hit you. We will listen to you cry and we won’t tell you to stop. We won’t tell you to be strong because we know you are being exactly as strong as you can be. We know that your need is deep and that you can’t handle this, even as you are in the midst of handling it.

What you said: Every child is a blessing.

What we heard: Suck it up, buttercup!

First, duh! Of course my child is a blessing. I love him like fire. That does not invalidate my pain. In fact, my love is causing my pain because if I didn’t love him, why would I even care?

This is the Italy/Holland/Sudan problem. In 1987, Emily Perl Kingsley wrote an essay (which every parent of a child with disabilities is contractually obligated to receive in his or her inbox a minimum of 40 times in the year following initial diagnosis) comparing having a child to taking a trip to Italy. You’re planning this lovely vacation in Italy, and if your child has disabilities, it’s like accidentally going to Holland, and it’s very different and you’re disappointed, but hooray! It turns out Holland is fabulous!

Our plane landed in Sudan, and Carter and my husband and our other children and I are dodging bullets, rapists, and starvation, praying to escape with our lives. Windmills and tulips and charming sidewalk cafes sound damn good from here. I don’t owe it to anybody to put a smile on my face and pretend my blessings are different, but just as wonderful. Yes, there are some things about Carter’s illness that have made me a better person, but I would trade it all in an instant if it meant that Carter could have his brain intact and my other children could have had a childhood that didn’t include all the crises that their brother brought with him into the world.

What you said: Your faith will get your through! Or, God doesn’t bring us to it unless he plans to bring us through it! Or, With God all things are possible!

What we heard: You’re only having trouble because your faith is crappy and weak.

Here’s the deal: my faith did get me through, or rather, God did. I was more broken by the time Carter had his second birthday than I have ever revealed publicly, and I spent long, wakeful nights in the manner that is familiar to millions of people of faith: on my knees, the holy book of my tradition open in front of me, begging God for relief for me and my family and healing for my child. I told God that if we couldn’t have relief and healing, that I would very much like a carbon monoxide leak to take us all quietly in our sleep, and if that could be arranged while Jacob and Abbie were at their dad’s and Spencer was with his mom, then that would be infinitely preferable.

I am 90% convinced that if the house we lived in at that time had a garage, I wouldn’t be writing this to you now. The presence of God in the universe doesn’t let people of faith off the hook and platitudes like this don’t help anyone except the person who says them. Glib sayings about faith are all well and good when life is swell and the sun is shining. People who are suffering need something more substantial. If you are a person of faith, we need you to live that faith by caring for us and hearing how we’re struggling.

What you asked: Did you take medicine while you were pregnant?

What we heard: How did you cause this?

This was a question someone asked me while Carter was a toddler, screaming and fretting through his second year of life. What I know now is, when people ask me questions designed to figure out how I caused Carter’s various disabilities and issues, they are really saying, this would never happen to me. And while I want to reassure you that it probably won’t happen to you, it could. Yes, you. You, who give money to charity and always wear your seatbelt and feed your family organic foods and are a very nice person who never kicked a puppy. I know that it is very, very painful to live in a world of uncertainty and fear because I live on a cliff every minute, but there are no guarantees in this life. We don’t have (will never have) answers to questions like why this childWhy our family? There are no answers to those questions, or at least none to which we have access during this lifetime.

There are dozens of variations of this question, all of them probing for a cause, seeking to lay blame on the feet of that traditional whipping post, dear old mom. When he was a baby, my friends who practiced natural and attachment parenting thought I wasn’t doing natural and attachment parenting hard enough (A baby whose needs are met won’t cry! Pfffffffft. Suck it, Dr. Sears.). My friends who practiced more conventional parenting thought I was spoiling Carter by nursing and carrying him so much. No matter which way I turned, someone assumed it was my fault, as if I wasn’t already trapped in a giant web of self-doubt and recrimination. I tried to give him away to foster care (Thank God Brian stopped me because I really do love that kid.) because I was sure he needed a better mother.

As he got older, people gave me books about discipline and my father-in-law offered to take Carter for two weeks to make him shape up. Do not succumb to this temptation. Ordinary, fallible parents do not cause serious disabilities in their children. We have not traumatized them into their problems by being human. Resist the impulse to make assumptions about a child’s parents based on that child’s behavior.

The world is uncertain and sometimes horrible, even here in middle class America where the grocery stores overflow with food and the roads are paved and talk radio churns its way ever forward. Crappy things happen to perfectly ordinary people, and most of the time there is no one and nothing to blame. It’s lousy and it feels horribly unfair; nevertheless, it’s the truth.

One note underlies all of these statements, and it is this: Please be quiet. You don’t mean to say that, but platitudes are conversation stoppers, and when we hear them, we hear you begging us, please don’t show me this anguish because I can’t bear it. I don’t know what to do and if you would be quiet I would be much more comfortable. I’m telling you this because I think most people don’t want to be saying that, but what is there to do? A friend (or family member, or acquaintance, or stranger) is in pain, and what am I to do? I don’t understand this. It’s scary. It’s weird. It’s so other you might as well be beaming me a message from Planet Zergon.

I’m going to tell you. Here is your map.

  • Listen. Just listen. Open yourself up. Yes, it hurts and it’s very scary. That’s OK. There is a person in front of you who is in pain. Don’t leave her alone with it.
  • Know that you can’t fix it. Don’t try. We have doctors and therapists and other professionals for treatment. Also, that diet/book/supplement you heard about that can cure all the problems? We’ve heard of it already. We’re on the internet while you sleep, and anyway, 26 of our Facebook friends already sent us the link.
  •  Acknowledge and affirm. Say, wow, that sounds hard. Say, oh, my God, how painful! Say, I hate that it’s so difficult for you.
  • Treat our kids the same way you treat other children in your life. Of course you should be sensitive, especially with kids who have emotional/social/behavioral issues, because many of them don’t want to be touched or may not be verbal, but in general, if you usually engage kids in conversation, do that with our kids too. Say hello. Smile. They might not respond predictably, if they respond at all, but they see you. 
  • Offer to help, but only if you mean it (people in pain are sensitive; we know when you’re saying words you don’t mean so you can feel good about yourself). My mom sometimes came to my house and gathered all my laundry baskets and every scrap of dirty laundry in the house (which completely filled the trunk of her car) and brought it all back a day or two later, clean and folded. Our friends from church occasionally brought us meals. A friend drove Carter and me to some of his appointments during the worst months because I didn’t feel safe driving alone with him. Those things meant the world to me. As much as I appreciated the clean clothes, meals, and rides, I was even more grateful to feel a little less alone in the world.
  • Send a note, a text, or an email. Parenting a child with special needs can be profoundly lonely. It’s also hectic and chaotic and we may not respond to you, but do it anyway. The world starts to feel very far away when life is all appointments, crisis, chaos, and praying for survival. Stay connected, even if it feels one-sided.
  • If you’re very close, spend a little time learning about your friend’s child’s diagnosis. There is no need to become an expert, but an evening spent learning will only make you a better listener. If you don’t know what to read, your friend will gladly tell you. 
  • Keep listening. Just show up and listen. There’s nothing any person in pain needs more. 

Inarticulate Screaming

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

If the diagnosis was cancer instead of a mental illness:

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

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

There would be enough doctors to meet his needs.*

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

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

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

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

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

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

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

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

I would be treated with sympathy instead of judgment.

My child would be treated with sympathy instead of judgment.

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

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

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

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

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

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

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

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

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

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

No one would insist that my child needs an exorcism.

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

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

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

You Are Going to Pay for Our Kids

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You know, if there are beds.

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

Where are the news vans and senators now?

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

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

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

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

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

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

 

 

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Photo by Kathryn Denman

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

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

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

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

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

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

There are no aftercare provisions in place.

No psychiatrist.

No psychologist.

No respite care.

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

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

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

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

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

What if she succeeds?

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

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

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

UPDATE: And it’s all good!

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

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

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

Ordinary Violence, Ordinary Heroism

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

Another day, another news story about bullets tearing bodies.

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

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

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

But…

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

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

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

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

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

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

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

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

What will we build?

How will we lead?

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

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

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

 

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

Pediatric Mental Illness? It’s Like This…

Pediatric mental illness is screaming and crying; raging and breaking things; cursing and swearing; ER trips and suicide attempts…

…and it is midnight visits from a 9-year-old who still knows how to fit into the curve I make in the bed just the way he did when he was a toddler. “Mommy, I’m so glad you’re the one who’s my mom.”

Pediatric mental illness is causing my marriage to become frayed and tattered by constant, unrelenting stress punctuated by terror…

…and it has also bound me to my husband and him to me with the strength of carbon steel forged by fire.

Pediatric mental illness is the cause of our deprivation due to living on one income: no vacations, no meals out, no new cars, and the horror and humiliation of calling on family for help when the car breaks down…

…and it is also a sense of contentment and pride knowing that, when it seemed that our flailing, struggling, violent, suicide-attempting little boy was doomed, we, his parents, were able to give him what he needed and help him back to relative stability. That may not always be true, and for so many families it has not worked that way, so we know that we are blessed, in spite of our financial suck-fest.

Pediatric mental illness is the hateful stares and nasty comments from strangers and those who do not (or will not) understand…

…and it is the vast, generous community of people near and far who surround us with love and understanding.

Pediatric mental illness is drama and crisis and terror…

…and it is also this little boy, my boy, whose heart is so broad, whose empathy is so deep, whose emotional generosity is so vast he takes my breath away. He is afraid of so many things, but he is not afraid of people in pain. He is not afraid to feel your pain with you.

Pediatric mental illness is the crumbling of our family around us, the absence of two of my children, the deep pain and woundedness in us all…

…and it is also a new understanding of what it means to be family, to invite without forcing, to choose to stay, not from obligation, but from love.

Pediatric mental illness is the utter destruction of faith, smashed around our feet and ground to dust…

…and it is the rebuilding of a new faith, faith that breathes humility into us in incomprehensible, overwhelming ways, faith that makes no false promises, faith that makes it possible for us to live with the fear.

Pediatric mental illness is the thing I would cure in an instant, no questions, no looking back…

…and still, there are gifts.

This post originally appeared at Hopeful Parents.