How do you know when it’s time to take your autistic, bipolar twelve-year-old daughter to the psych ward? (They call them “behavioral units” now.) Is it when you find yourself sitting on her back and holding her arms to the ground while your wife lies on her legs? When she head-butts you the first time? The fifth? When she spits in your face? When she tears her bed frame apart and goes after you with one of the spindles? When she bites you? When she breaks the door, the cabinet, the walls? When she says she wants to kill you? When she does all these things ten times, twenty times, forty times in four weeks? The truth is that you don’t know. You really don’t.
When Bella first started to attack Liz and me more frequently than usual, I thought I knew how this was going to end. We’d been through similar episodes before: her doctor would prescribe new meds, we’d weather another rough week, and then we’d return to our version of normal. But it’s been a month, and the violence continues to escalate. After one of Bella’s rages subsides, I hold her as she cries and asks: “Why is this happening?”
I ask myself the same question. Her behavior stems, of course, from her autism and mental illness. Puberty can’t be helping. It might also be that our daughter is still struggling with attachment issues from her first year of life. Liz and I adopted Bella from China just before her first birthday. We anticipated from the beginning that she would have difficulties: When Liz visited Bella’s orphanage, she found a room of fifty baby girls in bare wooden cribs. They made no sound, as if they had given up on crying. Bella arrived home weighing just sixteen pounds, her body riddled with infections. She had trouble holding her head up. She never cried, just waved her hand incessantly back and forth in front of her face. That’s what worried me the most. I imagined her waving that hand before her eyes during her year in the orphanage, trying to convince herself that she was alive.
I talk to a friend whose son spent time on a behavioral unit. I hear how, during group therapy, the boy learned from other teens about cutting and bulimia and suicide methods. How can I subject Bella to that? I compare the crisis we are going through to all the crises that have come before, and I tell myself: Yes, this one is bad, but is it really that much worse? Won’t this, too, pass? I gaze at my daughter after she falls asleep, after her fists slacken and her jaw unclenches, and I try to imagine leaving this child I love so fiercely in the psych ward.
I don’t know if I can do it. I really don’t.
Then she goes after her thirteen-year-old brother, Nick. Then I know.
As we check our daughter into the hospital, I still think I know how this will end: a team of experts will apply their combined wisdom and experience to Bella’s case, carefully monitor her progress, and then discharge our brittle, brilliant girl into our arms.
Seven days later the insurance company informs the team of experts that it is time to release Bella despite the fact that she continues to behave aggressively. I ask the discharge nurse for advice about how to safely restrain our daughter. She explains that she isn’t allowed to help us with that: liability issues.
“Don’t leave bruises on her,” she tells me. “You might end up in trouble with the state.”
We’ve hardly left the parking lot before Bella hits Liz. I climb into the back seat to subdue Bella, and she kicks me in the head. She bites my arm. She head-butts me. I try not to bruise her as I hold her down.
The next day, after seven brawls, a lacerated head (Liz), a bloody eye (me), and bruises for both us and Bella, I wrestle our daughter back to the hospital, and they agree to readmit her. It has finally occurred to me that I don’t have any idea how this will end.
Bella didn’t start to talk until the age of three. The phrase “too loud,” though not her first, soon became her favorite. Any unexpected sound could trigger an outburst: a plane passing overhead, birds singing outside an open window, a spoon clanking against a bowl. A meal in a noisy public place always ended in disaster, with food flying.
Mealtimes troubled Bella the most. If Nick tried to talk, Bella would shout, “You’re too loud!”
“I was talking regular,” he’d protest.
I’d try to calm both children down, but Bella would continue to insist that Nick was shouting.
“I wasn’t shouting!” he’d respond, shouting now.
Finally my preschool-aged daughter provided a solution: she took her plate and fork from the dinner table, retreated into a closet near the kitchen, and closed the door. For the rest of that week, whenever her brother’s voice overwhelmed her at the table, she’d carry her plate and fork to the closet, where she’d sit on the floor and finish her dinner. We cleared out the space and furnished it with a small chair and table. Bella called it her dining room. She’d sometimes let Liz or me sit in the closet with her, as long as we didn’t talk. We felt guilty that we hadn’t been able to find a better solution for her and hoped the Department of Children and Family Services wouldn’t hear of this arrangement.
After six months of letting Bella dine in the closet, we began to medicate her. The medications helped, but so did sensory stimulation. Some autistic kids benefit from a gentle brushing on the arms, or fidget toys, or chew rings. Bella does better when we apply deep pressure to her body, especially her joints. After we would squeeze her between two beanbag chairs, she’d become less sensitive to sounds, less aggressive, and could focus more. We built a sensory gym in our basement with bars, ladders, and swings. She jumped on our backyard trampoline so much we had to replace the mat. But the world doesn’t always provide these sensory opportunities, so Bella improvised: She leaned into walls. She crouched on chairs. She never stopped moving. She made the world her gym.
When the meds, the sensory inputs, and our attempts to redirect her attention didn’t work, only one person could reach Bella: Nick. We’d adopted him from Nepal and brought him home just four months before Bella. It hasn’t always been easy for him to be her brother. He had to turn off the sound on most video games and turn down television shows until they were barely audible. On our infrequent vacations we had to drive, because of Bella’s fear of planes. Despite all that, Bella and Nick were inseparable when they were young. Although they grew apart when Nick reached first grade and realized that girls are different and to be avoided, his empathy for his sister survived.
We never asked Nick to help with Bella, but when she needed him the most, he was there for her. He might walk into the room where we were sprawled on the floor, with me holding her tight, and ask if she wanted some ice cream. Her rigid body would slacken, and the unexpected attention from the person she idolizes above all others would distract her from whatever had gone wrong. A smile would appear. “Yeah!” she’d say.
As Nick prepared the ice cream and they talked for the first time in weeks, I’d puzzle over her ability to recover so quickly.
Last night the hospital called just after eleven to tell me that Bella was screaming profanities, banging on the window screens in her room, and threatening to jump off the bed and hurt herself. To keep her safe, they’d put her in four-point restraints.
I don’t cry as a rule, but lately I want to cry all the time. I cried today during church. I cried on the way home from our afternoon visit with Bella. I’m willing myself not to cry right now, because I’ll be calling my daughter in five minutes, and I don’t want my voice to break on the phone.
Every weeknight Liz and I drive an hour through traffic to the hospital. We try to keep our expectations in check, but hope sneaks in unnoticed. We usually spend less than ten minutes with Bella, and it always ends badly. On our first visit she asked us where she would live after she got out, because she certainly wasn’t coming home with us. On the next she wept and begged us to take her home. One night she threw her dinner at me. The night after that, during activity hour, she stood up in front of the other families and called us fuckers. She hit Liz. She hit me. “She was fine before you got here,” the staff told us. Later they would call and say they had to strap her down after we left. We’ve learned not to let ourselves hope.
Now would be a good time to start believing in the God of my parents, the one who listens to your pleas for help and inspires faith in his mysterious plan. Despite going to church, I’ve not been capable of that kind of faith for a long time. And, let’s face it, if I had such faith, Bella’s life would test it severely. What kind of masochistic God requires my daughter to suffer like this?
During tonight’s visit Bella demands to be discharged. Only the presence of two staff members in the visiting room prevents her from attacking us. Later, at home, the phone rings. The nurse apologizes for calling so late, but tells me that, after we left, Bella had a great evening. Her mood was excellent. She played games with the staff. Tonight I will sleep.
You meet many kind people when your daughter is diagnosed with a mental illness. They tell you that they have a brother, a cousin, a nephew, a sister-in-law who is bipolar. They offer this as a way of saying: You’re not alone; others have been through this. But then they tell you about the months, or years, it took to get the relative’s meds right. They tell you about the nasty side effects of the drugs. They tell you about the relative’s eventual refusal to take the pills and the illicit self-medication. They tell you about the hospitalizations — five, ten, fifteen. Some tell you about the eventual stability. A few tell you about parents who buried their child.
I’m blessed to have friends whose willingness to listen has helped me during this difficult time. With everyone else, though, it’s hard to discuss Bella. When I told one acquaintance that my daughter was in the psych ward, he asked if I’d ever watched those “positive parenting” tapes he had loaned me. Most of the time I say little about Bella. When someone asks how I am, I’ve settled on “OK.” Strictly speaking it’s a lie, but I don’t want to make my friends feel as uncomfortable as I do.
Bella’s first attempt at friendship came shortly after we enrolled her in a pre-K early-intervention school program. One day I asked if she’d made any new friends, and she replied, “I played with Phillip.”
“Is he nice?”
“He’s got this thing on his neck,” she said, gently rubbing her own.
For months she’d come home and talk about Phillip every night — mainly about his neck. Phillip wasn’t Bella’s first obsession, and he wouldn’t be her last. We tried to contact his mother to set up a play date, but she never called us back.
One night Bella told me she’d touched “it.”
I looked up from my book. “Touched what?”
I put my book down and asked how that had gone. Bella said Phillip had hit her, and I said maybe she shouldn’t touch his neck anymore.
“But there’s that thing on it,” she said, rubbing her own neck wistfully.
Several weeks later Bella announced before dinner that she wanted to be called “Phillip” from now on. For two full weeks she demanded that everyone call her Phillip — neighbors, friends, family members. If someone accidentally called her Bella, she would scream, “My name is Phillip!”
One Saturday during lunch she announced, “My name is not Phillip!”
Genuinely puzzled, Nick asked what he should call her.
Bella’s eyes darted around the room, then landed on the plate in front of her. “Bread! My name is Bread!”
Bread? Even by the standards of our household this was pushing it. “Really, Bella?” I asked. “Bread?”
The next day she was Bella again.
My daughter’s first successful friendship lasted two glorious hours. She was almost five when we were vacationing at the beach. A little girl her age was digging in the sand nearby, and Bella expressed a desire to play with her. Go ahead, I told her.
She paused. “How?”
“Tell her that your name is Bella, ask her what her name is, and then ask if she’d like to play.”
Bella chewed on her lip, digesting this information, then did as I’d suggested. When the girl said yes, Bella smiled over her shoulder at me and squatted down next to her new playmate. I watched from a distance as my daughter tried unsuccessfully to convince the girl to build a sand castle. I called Bella over and suggested she ask the girl what she wanted to do.
Bella nodded solemnly and again took my advice. They ended up floating the girl’s doll on a raft. They gathered a pile of rocks. They rolled in the sand. Finally the other girl and her family left. Bella ran back to me and said, “I made a friend. My first friend!”
For the next three days she peppered me with questions about how she had achieved this marvelous feat. We reviewed it step by step, over and over.
Bella craves friendship, but for her it’s work. It took many months with a therapist and flash cards for Bella to learn the difference between a sad face and an angry face. Endless repetition taught her the basics of conversation that come with ease to the rest of us. She thinks very literally, in black and white. We had to explain the gray areas that pervade relationships.
On her first day of kindergarten, after Bella met a new classmate, she turned to his mom and asked, “Why is he so fat?”
I apologized to the other parent, mumbled something about autism, and pulled Bella aside to explain that she shouldn’t have said that.
“But he is fat.”
Whether it was true or not, I said, it wasn’t a nice thing to say. She had hurt his feelings.
“But people always say that I’m so skinny. Why is that OK?”
I considered trying to explain the cultural bias toward thinness, but I couldn’t find the words. Bella saved me. “Is this the gray area?” she asked.
“It is,” I said, relieved.
Her efforts to make friends eventually paid off. With persistence, practice, and a bit of support from several parents, Bella forged three ongoing friendships. Her friends are patient with her. They value her unique and exuberant personality. They forgive her.
Hospital psych units provide services, not cures. The one-week deadline is approaching again. We plan to bring our daughter home, but I also know that we need a backup plan. I’ve been researching frantically since Bella went back in the hospital, and everyone tells us that we have to consider a residential treatment center, or RTC. To find the right one, we hire an “educational consultant.” We learn that RTCs vary in focus and quality, with their reputations often changing from one year to the next. I learn that most of them are owned by three large corporations, and that the centers often get sued, declare bankruptcy, and then reopen a couple of months later in a different location with the same staff. Few RTCs can deal with a child who has both autism and bipolar disorder, and none of them are in our state. I’m glad it’s just a backup plan.
Bella has been in the hospital for a week and a half now. The insurance company is getting antsy, and our daughter is getting worse. She’s lashing out more. The psychiatrist continues to change her medications, which are causing double vision, sore joints, nausea, and hypothyroidism. I struggle to recognize Bella when we see her. It’s become clear we can’t bring her home. Liz and I both realized it yesterday, but neither of us could admit it aloud. Today we found the words and then cried and clung to each other. We’ve stopped preparing Bella’s bedroom for her return — fixing holes in the walls and bolting new furniture into place. Instead we wait to hear from the educational consultant that our daughter has been accepted into a six-week residential program in Utah, one of only two like it in the country. The program won’t take her if her symptoms are acute. The hospital psychiatrist stretches the truth to present Bella as stable — probably so he can get her off his ward.
Should Bella be accepted, we will need to get her to Utah. If she flies commercial, she could attack somebody on the plane, which might mean Homeland Security getting involved. Our consultant recommends that we hire two medical-transport personnel (another industry I didn’t know existed) to take her on a twenty-hour van ride to Salt Lake City. When the consultant asks if Bella is a “runner,” I decide to charter a private plane.
During our visit today Bella asks when she will be discharged. Will she come home when she gets out? Will she go to an RTC? (She’s learning the jargon from the other kids.) We evade her questions as best we can, because we suspect she won’t like the answers, but we don’t lie. We know better than to lie.
The first time Bella caught us in a lie, she was in second grade. A few weeks before Christmas she began coming home from school irritable. She was hitting Liz in the parking lot, and predinner scuffles had become routine. Finally Liz grabbed Bella firmly by the shoulders and asked what was bothering her.
Bella began to cry and told Liz about the horrible elf in her classroom: He was a doll who sat on a shelf, and every night he moved to a different spot. The teacher said the elf was watching the kids all the time. If they were bad, he would tell Santa not to give them any presents.
Liz squeezed Bella tight and told her the elf wasn’t real, and neither was Santa Claus; Liz and I had wrapped all those gifts.
Bella stepped away from her mom. “And the Easter Bunny?”
“The tooth fairy?”
Bella’s tear-stained face broke into a grin, and she hugged her mother in relief. Then she stepped back again and squinted at Liz: “Why would you lie to me?”
I don’t sleep the night before we fly to Utah. On the drive to the airport I peer at my daughter in the rearview mirror, trying to read her mood. She boards the chartered jet wearing her Elsa gown.
A year ago Bella watched the Disney movie Frozen and became obsessed with its heroine, Elsa. She printed out pictures of her. She badgered her mom into ordering an Elsa dress custom-made to fit her five-foot-three frame, and she wore the dress around the house. She jumped on the trampoline in it. She wore it to restaurants. She even wore it while riding on a jet ski with her arms wrapped around my waist. She wore it until it grew frayed and tattered, and then she saved her allowance to buy a new one.
Eventually the Elsa obsession passed, like all the other obsessions before it. But when Bella first went into the hospital, she asked for her Elsa dress. It had been eight months since she’d worn it, and it barely fit. The hospital had a strict rule against dresses, but the nurses didn’t know what to do with this volatile kid, so they made an exception. After we brought it, Bella wouldn’t take the dress off. She refused to shower for four days, afraid they wouldn’t let her put the dress back on.
I’ve been thinking a lot about the plot of Frozen: A young princess finds that she has extraordinary powers but can’t control them when she gets angry, and she hurts those closest to her. She is kept in seclusion and told to suppress her powers. When she unleashes them again, people call her a monster and put her in restraints. By the end Elsa learns to control her powers and use them for good. I hope Bella, in her locked facility in Utah, will do the same.
The flight begins smoothly enough. After Bella falls asleep, I ask myself, yet again, whether we’re overreacting. Then Bella wakes and starts to kick Liz for no reason, and I remember how we got here.
The center is smaller than I expected. The staff spirits Bella away behind a locked door while the doctors escort Liz and me to a meeting room and ask us to describe our daughter. We try to ignore the sound of her screams through the walls as we answer the doctors’ questions.
They want to know when our daughter started to lash out. It’s difficult to pinpoint: When Bella reached puberty? The first time Bella hit her mom? My mind drifts to when my daughter was about eight years old, and Liz tried to send her to her room after a tantrum.
“I’m going to kill you,” Bella said to her mom.
It wasn’t unheard of for Bella to make threats, but this time she took it farther than usual, indicating which kitchen knife she would use, and that it would happen while Liz was asleep. My wife texted me at work to suggest that I come home early.
Bella had calmed down by the time I got there. “I know you were upset,” I said to her, “but you can’t use those kinds of words.”
“I meant it,” she said.
I shifted in my seat. “What do you mean?”
“I’m going to kill Mom. With the knife.”
I asked if she was just trying to let us know she was mad, and she said, “No, I’m going to kill her.” There was no emotion in her voice. She didn’t appear angry or anxious; she was just calmly stating facts.
The books on how to parent an autistic child hadn’t covered this.
I asked Bella why she wanted to kill her mom, and she said, “Because of the wrinkles in my shirt.”
We called her psychiatrist, who increased the dose of the antipsychotic that Bella was taking. We locked up the knives. We slept poorly. Over the next three days, as the increased medications slowly restored Bella’s equilibrium, we tried to figure out why the wrinkles in our daughter’s shirt might make her want to murder her mother.
Whenever we meet with a new doctor or therapist, Bella will invariably turn to me and say, “Tell her about the wrinkles in my shirt.”
For some reason she thinks I understand their importance. I have come up with an explanation that mostly satisfies her: The wrinkles in Bella’s shirt, I’ll tell the therapist, have something to do with the way Bella feels around other people. If she feels intimidated or inferior, the wrinkles are bad. If she feels confident or superior, the wrinkles are good.
At this point the clinician will typically ask if there are actually wrinkles in the shirt. I’ll say they’re more like a metaphor, and Bella will shake her head emphatically and insist they are real.
I tell this and a lot more to the doctors in Utah while they take notes. Then Liz and I go onto the unit to see Bella’s room and say goodbye. A large staff member looms near her door. The bed is bolted to the floor, and the bathroom door locks from the outside. Bella’s eyes accuse us. We try to hug her, but our daughter, never one for drawn-out goodbyes, smacks her mom on the rear and tells her to get out.
It’s been two weeks since we left Bella in Utah, and I’ve made a decision that seems selfish: I’ve decided to be happy whether or not my daughter can be. None of this is my fault, I tell myself. I love her and am doing everything I possibly can to help her. This is going to be a long ordeal that may not end well, and I won’t let it turn me into a bitter, angry, sad person. I will be a happy person who is often sad. And bitter. And angry.
I don’t cry as much. Some days I don’t even tear up. I’m learning to be around other people again. We recently went out to dinner with friends. I can even talk to some of them about what’s happening with Bella. I fight the urge to feel guilty. Mostly I am numb.
Everyone asks how Nick is dealing with this. It’s difficult to tell. He’s a thirteen-year-old boy. He goes about his life of soccer games, sleepovers, and junk food. He hugs us more, though, and sometimes snuggles with us in bed at night, something he gave up years ago.
Tomorrow Liz and I will fly to visit Bella for the first time since we checked her into the RTC. (I hate that I use the abbreviation so casually. I hate that I now talk about how my daughter is “presenting.”) Nick is moody and sullen. He lost two soccer games this weekend, but he’s also probably thinking about his sister. When I ask what he’s sad about, he shrugs. I tell him I’m sad because his sister isn’t here.
Without looking at me, Nick says, “Well, it’s your own fault.”
“What do you mean?”
“You’re the one who took her there.”
I tell him that putting Bella in the center was the hardest thing I’ve ever done. I tell him that if she had a life-threatening illness, I’d want her to have the best doctors, and that this is no different. Then I realize I am talking to myself more than I am to Nick, and I shut up and tickle him, and he tickles me back.
The day of our flight we get a call from Utah. The doctors say that when they told Bella we were coming, she asked to talk to us first; she has a question. This feels both ominous and promising.
She refused our call the first week; she said it would make her mad. (Her therapist thought it was wonderful that Bella could be so verbal about her emotions, but I found it difficult to share his enthusiasm.) Last week the call was short but not adversarial, a fact we celebrated. Now I answer my daughter’s video call and see her smile on the phone’s screen: not a forced smile, or a manic smile, or a vindictive smile, but her carefree, childlike smile. My quirky, autistic daughter is asking us to bring her other Elsa dress. We let ourselves feel hopeful, just a little.
Routines have always been important to Bella. One began the day we brought her home from China: Every night, when I put her to bed, I would say, “I love you.”
When she got old enough to talk, she would sometimes respond, “OK,” or, “I know.” If I said it again, she’d snap, “I heard you.” But she never said, I love you, too.
After years of this I asked her why she didn’t reply that she loved me.
She said matter-of-factly that she wasn’t sure she did love me. She asked what love felt like.
I tried to think of the best way to describe it. “I guess it feels like you would do anything for the other person.”
She squinted at me. “Like you would die to save me?”
I shrugged. “Sure.”
“Sure like you don’t really care one way or the other, or sure like yes, you would die for me?”
“Sure like yes, I would die for you.”
She thought about that for a minute. “Don’t be mad,” she said, “but I don’t love you.” And she rolled over and went to sleep.
Finally one night, when she was ten years old and in a good mood, I said, “Hey, Bella, you know what?”
She didn’t answer, so I said it again: “You know what?”
She sighed. “ ‘I love you’?” she asked.
“I love you, too,” I replied.
She giggled and burrowed under her blanket.
This became our new routine. For the next two years, right up until she went into the hospital, she allowed me to trick her every night into saying, “I love you.”
Names and identifying details in this essay have been changed to protect privacy.