Why My Son Doesn’t Know He’s Mentally Ill

Language is powerful, and the longer I can protect my son from some of the hurtful language I hear everyday, the better.

There was a moment, during a recent panel discussion for parents of children with special needs, when I panicked because my son does not know all the official names of his diagnoses.

During that moment, one parent said that she had not yet told her young son the names of the things that made him different from most other kids, and another parent scolded, saying, “Children know when they’re different. You have to tell your child now.” I felt cold for a moment, because I am a person who hears scolding and takes it into myself even when it is neither pointed at me nor true.

Outside of that moment when I doubted myself briefly (and so many other moments, because raising a child with severe mental illness and intellectual disability is even more baffling than raising a child who is developing typically), I am confident I have given my son the language he needs to speak of his unusual experiences of the world. He can speak of having a hard time with his feelings, of using strategies and needing help from people and medicine to manage them. He talks about how learning takes extra time and how he needs his special school where he gets to work at his own pace and the teachers are very patient with him. He knows that sometimes, he sees, hears, feels, and believes things that other people don’t, and that when reality gets slippery this way, he needs to talk to his psychiatrist and psychologist because this is a medical problem, and he needs help to put reality back where it belongs.

Words he does not know apply to him: mentally ill, bipolar, psychotic.

The first problem is the casual use of words for psychiatric diagnoses that we hear all the time. Moody or unpredictable people are referred to as bipolar. Angry people who act like jerks are called psychotic or psycho. Nations are said to have schizophrenic relationships with other nations. Spree killers are proclaimed to be mentally ill before we know anything about them, sometimes even their names.

Then, there’s the news. Oh, the news. In the US, we speak far too rarely about the crisis in our mental health care system, but when we do, talking heads refer to The Mentally Ill as if they were some massive, homogenous group of people whose needs we must meet lest they shoot us all. In fact, people with mental illness are all around us, dealing with challenges that range from very mild to profound, and our obligation to help them meet their needs for treatment have almost everything to do with being decent people and only a tiny bit with preventing violence.

Finally there are the depictions of people with mental illness in entertainment. Recently, the ABC sitcom Modern Family featured an episode in which the character Claire made a haunted house whose theme was “scary insane asylum” all for viewers’ amusement, and all based on the assumption that people with mental illness are not real people, and they certainly aren’t at home on a Wednesday evening, watching TV. We see again and again in media the same tired tropes: the psycho, the schizo, the madman, the crazed animal, the lunatic, the monster.

I can’t bear for my son to see himself reflected in any of this, so we speak instead of difficulties, challenges, and issues. He knows that everyone has difficulties, and that his specific difficulties are of a sort that requires help from doctors. He knows there was an accident in his brain before he was born and that it makes some things harder for him. Most importantly, he knows that his difficulties are not the most important things about him. His humor, generosity, gentleness, and curiosity are much more interesting than the ways his brain sometimes misfires.

I’m probably protecting myself as much as I’m protecting him. He doesn’t remember the rage he experienced in 2009 that lasted over 10 hours, and during the first hour of which I peeled him off a smaller child who he was trying to choke to death. I don’t want him to catch the evening news after another mass shooting and wonder, as I do, could that be our future? Am I watching myself ten years from now? What will they say about him, about us, about our family?

My son does not deserve to be afraid of himself. He doesn’t deserve to see ridiculous, cartoonish caricatures of people with the same diagnoses he has. He doesn’t deserve to live a life that’s shrouded in stigma around an illness he has because a freak accident damaged his brain before his birth. He doesn’t deserve to live in fear that he won’t be able to access necessary medical treatment because in the US, we have flat refused to prioritize treatment for people who have illnesses whose symptoms manifest in thoughts, moods, and behaviors.

Because of all that, my son doesn’t know he is mentally ill. He doesn’t know that his doctors write the words “bipolar with psychotic features” under his name when they communicate with each other or our insurance company. It’s not because we’re pretending that he’s a typically developing child and everything is fine; it’s because language is powerful, and the longer I can protect my son from some of the hurtful language I hear everyday, the better.

Illustrations by Christine Juneau

Reluctant Sorority Sisters

Posted on July 10, 2014 by CNF • Posted in Blog, Featured Blog Posts, General • Tagged bipolar disorder, children and childhood, Dorothy O'Donnell, parenting, pediatric bipolar disorder • Leave a comment

By Dorothy O’Donnell

I sat with three other moms on ugly green wedges of modular seating in the lobby of the Stanford Psychiatric Services building. It was a Tuesday evening and we were waiting for our daughters to finish their first session of group Cognitive Behavioral Therapy (CBT) for kids with bipolar disorder. At first, we wrapped ourselves in cocoons of awkward silence. Our eyes bounced from our phones to the clock on the wall or—whenever it dinged, rolled back its heavy doors with a groan, and deposited someone into the shadowy room—the elevator.

I glanced at the pretty Asian woman sitting next to me. I remembered her kind smile when we’d all dropped off our girls—who ranged in age from 11 (Sadie) to 15—in the stuffy, windowless conference room on the third floor.

“Does your daughter have bipolar disorder?” I asked, tentatively, feeling like an idiot as soon as I did. Duh. Why else would she be here?

She nodded. In a soft voice she told me that Lily, 15, had only recently been diagnosed. But she’d had problems since she was 12 and had been hospitalized four times. Thanks to lithium, Lily was doing better, although the drug made her lethargic and slow.

Her father also had bipolar disorder. “He passed away a few years ago,” Lily’s mother whispered. Tilting her head back, she pantomimed raising a bottle to her lips. “He drank a lot,” she said, lowering her arm. “He didn’t know he was bipolar.”

The matter of fact way she delivered this news hit me like the jolt of plunging into an icy lake. I was reminded, once again, just how deadly this illness can be. And how lucky we are that, in spite of her struggles, Sadie isn’t much sicker and is getting the help she needs.

Lily’s mom asked how old Sadie was when she was diagnosed. Her eyes widened when I said 6. The woman sitting across from us leaned forward, listening intently to our conversation.

“How old was your daughter when you knew something was wrong?” I asked her.

“Right away,” she replied, grimacing. “Amy cried all the time when she was a baby.”

Her husband’s denial about their daughter’s condition led them to divorce. She sighed and folded her arms tighter across her chest.

“Amy just goes into a really dark tunnel sometimes” she said, shaking her head.

The rest of us nodded. We all knew that tunnel. We knew how the strain of raising a child with a mental illness could chip away at even the most solid marriages. We knew what it was like to watch our girls flounder in school and lose friends. We’d felt the sting of skepticism from our own friends, relatives and others when we uttered the words “pediatric bipolar disorder.” We knew about clinging to the hope that each new medication would be the one that would prevent our child from ever crawling back into that tunnel.

The only mother who hadn’t yet spoken, a blonde woman with tired eyes, rose from her seat. She shared that her girl, Kylie, who was 12, had originally been diagnosed with ADHD.

“I sobbed when the doctor told me she had bipolar disorder,” she said.

The illness had ravaged her sister’s life. More nods. We’d all seen adult family members sidelined by bipolar disorder and robbed of their potential. We’d watched them succumb to addiction and push away those who love them with their erratic moods and behavior. And we knew how the lure of suicide, with its promise to end their pain forever, always clouded their futures.

Our formerly subdued group was suddenly chatty as a gathering of sorority sisters—which, in a way, we were. Talking over each other, we swapped stories and compared notes on symptoms and medications. We didn’t slow down until the elevator chimed and one of the older girls from the group swished past us in her long bohemian skirt, signaling the 90-minute therapy session was over.

Sadie was the last one to pop out of the elevator.

“How’d it go?” I asked as we headed to the parking lot, though the grin on her face answered my question.

“Really good!” she said. “But it went by so fast.”

I knew how she felt. I was pretty sure spending time with other girls who had bipolar disorder would help her. I hadn’t anticipated how therapeutic it would be for me to hang out in the lobby with their moms.

Dorothy O’Donnell is a freelance writer whose work has been featured in various newspapers and on greatschools.org,mothering.com and NPR. She is working on a memoir about raising a young child diagnosed with pediatric bipolar disorder.

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The End of All Things

Posted on June 16, 2014 by CNF • Posted in General, Highlights • Tagged bipolar disorder, Catherine W. Crawford, emotions, family, homeschooling, parenting, suicide • 4 Comments

By Catherine W. Crawford

I find myself lately wandering through the past. Sorting through layers of my life like an archaeologist, careful to brush gently so as not to damage what remains.

A six-bedroom house has many corners. We were once practically a town unto ourselves. Our doors never locked, our lights perpetually ablaze to ward off sadness and accommodate insomnia. It seems like a ghost town now. I look for tumbleweed. The two oldest kids live a thousand miles away. The extended family who shared our lives have moved on, grateful to be beyond the reach of the co-dependence that bound us. My husband Quinn, the central feature of the home, the elephant in every room, took his own life almost five years ago. The three young people still living at home maintain an uneasy alliance, each waiting to fall out of the nest and, gathering strength and a small amount of savings, flies away. The empty spaces have, like a dig, begun to give up their secrets; photos, notebooks, and revelations have surfaced. Some of these finds are mundane, some earth-shaking, and all leave me in wonder.

I have found my sociology notes, and copies of the tests that might have helped my younger daughter get a grade higher than a C last semester. I tore the house apart looking for them and here they are, right next to my desk.

I have found my phone charger, from three phones ago.

I have found many photographs.

In one, I am surrounded by pumpkins and kids, an autumn day eighteen years ago. My Autumn Self was always a happy one, endlessly optimistic, energetic, and creative. I have no doubt the woman in the photo thought her worst days were behind her. Losing a child, job changes, health issues, strange days when her husband was confused and erratic, early courtship days when people seemed conspired against them as a couple. What would we do differently if we could see what form our futures would take?

Another picture of all of us, smiles tired and wary, an evening birthday party about eight years ago. A stolen moment with cake and presents.

A photo I’ve never seen before. My eldest child, thin and tense, the way brides-to-be are, surrounded by her bridesmaids, bathed in sunshine at a bridal luncheon. Most of the photos seem to be taken in the fall, my hopeful time of the year. Too often, loving a person with a mood disorder means you cycle right along with them, and my husband’s cycles became ours.

I have found pictures of Quinn too, and they strike me in an odd way. I can tell his mood, what the day had entailed, what had not yet happened. It is always surprising to find photos of a man who hated to be photographed. He once (once? Maybe twenty times) told me how, as a ten year old, he ripped up every photo he could find of himself, systematically leafing through every album, destroying himself. I had always pictured this scene after a punishment from his mother, one laced with the poisonous guilt and deep shame she wielded so well. No wonder. No wonder. I grieve for the little boy who hated himself so much.

I married, at far too young an age, a man who was brilliant, angry, damaged. I thought the force of my joy could fix him. I thought children were sure to help. Although he said he wanted none, I ignored that statement, certain it was a wish to remain young. I had never been consistent taking a pill. I was just as inconsistent with The Pill. However, I barely thought about the adults my babies would become, the father I’d be giving them.

As the children grew, I wound the cocoon around us. The key was to keep the love coming—and keep the world away. I never knew the manipulation I was under, never knew the cocoon was his to weave, not mine.

I stayed home with my babies; I nursed them and homeschooled them. Through it all, Quinn encouraged me. My days were poured into the little ones. But the unwritten law was that all attention shifted to Quinn at the end of every day—and all weekend long. Even now, my memories of those days are rosy-hued and I miss them. Nowhere in these memories do I find me. I told my homeschooling friends my husband was very supportive. Very supportive.

I had no concept of mental illness, of bipolar disorder, of the long tentacles of shame and depression. My own upbringing had been gentle, structured, purposeful, with a sense of security so integral to my life, that I did not see my husband had none of his own. His narcissism was a thing of survival. He was a funny Pied Piper when his mood was high, organizing contests, making up rhymes and songs, dispensing tickles and compliments, and pocket money. And if they were naughty within earshot of Daddy, they were subjected to long shaming lectures; Quinn accused them of attitudes and even looks they could not have understood. There were tears, and shouting, and the next day a toy. A television, a bicycle, a puppy, the post-punishment gifts were ridiculous.

These gifts left the children confused but grateful that Daddy was no longer mad.

I can recall, with very little effort, the feeling of overwhelming relief when his rage was over, and all was temporarily ok again, as if the sun had come out and we were redeemed.

* * *

My hand traces the drywall that was pierced by shotgun spray a few months before he died. Examining the gun he forced me to buy for him, he accidentally discharged a shot in the house, which miraculously hurt no one. The wall was patched but the inside of the closet was not repaired. The holes lie just below some words an angry child once scrawled on the wall after a punishment. The words say, “Dad is an asshole.”

I have found his well-worn Zippo lighter. The sound it makes upon opening it, or rather the absence of that sound, was the first clue I had that he was dead. I hadn’t heard the sound in the hours before he died that night. I remember telling the 911 operator this fact.

I have found the journal he gave me for Christmas, 1981—the year the Mighty Quinn descended upon my life. We were soon engaged to the horror of my parents and siblings—and in a strange way, to my own relief. I would no longer have to see my mother’s face tighten as she heard Quinn’s car sweep up the driveway to take me away. I would no longer have to endure my father’s gentle, old-fashioned comments about character, and temperament, and the nature of a successful courtship. Or the lectures about how my education, my dreams and my goals, also mattered. Quinn and I would be away. Our grand story would continue, this time with new china and pretty towels, and a new name.

I hold the journal in hand, the pretty flowered cover now faded. On a romantic whim, I had dedicated the journal to Quinn, “the god of my idolatry” (I tended to speak in Shakespearean terms at age nineteen and sometimes quoted Elizabeth Barrett Browning). The first few pages are filled with gushing, overwrought nightly declarations of love. But as journals often do, it diminished into once-or-twice-weekly entries about my day. Quinn would ask how the journal was coming, and I would hurriedly write something heartfelt. After reading these entries, he would spend the evening pouting that my sentiments were “shallow” and “like something you would write in a letter to your sister.” My next entries would then gush about our “love” and the people who were thwarting that love around us.

In those pages I feel his manipulation, and my own desperate attempts to find a reason for it. I grieve that I only see it now.

I have been called “brave” by those who have known the outer edges of my life, but not the inner madness. I have been called “smart” as long as I can remember, but how smart was I not to see what I helped to construct? A brave woman gets a madman to a doctor. A smart woman does not buy a depressed person a gun.

He is gone now, that brilliant abusive boy, killed by his own hand with a gun he coerced me to buy, ostensibly, to protect us. Left in his wake are those five children, grown now, eager to flee this house, eager to try to escape memories of his illnesses, the chronic pain he suffered from a car accident, his despair at losing his job, his descent into a delusional world he insisted we share.

I have rearranged many of the photos on the walls, trying to incorporate those golden autumn days. I have loaded up the car with things that no longer fit into our lives. I am having more trouble finding a place for the memories, and where to put the girl who wrote the journal.

I have wrapped the journal carefully in tissue paper, unwrapped it, wrapped it again. I have flirted with the idea of burning it and just as quickly decided against it. I have held the journal to my nose, trying to detect the odor of Old Spice and Marlboros.

I have closed the nearest closet, and thrown away the sociology notes. One of the empty bedrooms will be reclaimed and a daybed and desk should just about fit. The artifacts will be cataloged, studied, dispensed with, put to rest. Here, at the end of all things, it is good to open my hands and let go.

Catherine W. Crawford, a Northern Illinois resident, wrote her first parenting piece when her first child was three. She is now a grandmother and finds that parenting never ceases to inspire and reward her.

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