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Below is an exclusive inside peak of Carly’s Voice, only available here on MyAutismTeam. Special thanks to MyAutismTeam Guest Blogger  & author of Carly’s Voice, Arthur Fleischmann.

Sometimes small worries are the biggest. Of course parents of kids with challenges worry about their future; their happiness; their loneliness and isolation. But because our daughter only seemed to have an on and off switch, no calm in-between, I worried most about night times and what fresh hell might be unleashed during those gauzy hours between midnight and dawn.

Here is an excerpt, “Sleepness” from the book, Carly’s Voice, I wrote with my daughter Carly.

Sleeplessness

Even now, with the worst of it behind us, I have a sense of foreboding at bedtime. Through most of her childhood, Carly’s constant movement and inability to settle tormented her sleep and ours. She would struggle to fall asleep at a reasonable hour and to stay asleep for more than four. All parents go through sleepless nights with their infants, but by forty I had hoped to be past this phase of my life.

One night, around eleven, when Carly was little, Tammy and I were in bed, as usual. Tammy can only fall asleep with the television on, so we’d watch Jon Stewart ridicule George Bush, or a news show on CNN—a group of guys I call the screamers because they yell over one another to the point of childishness. Tammy, however, is a news junkie and follows the commentators and the politicians that they rip apart like most guys follow sports. But to me they look like old gray men raging against the system, and I can’t understand how it relaxes her.

When I finally drifted off, I did so with one ear open as always, because I knew my night was just beginning. Sure enough, just after two in the morning Carly burst from her room and jolted me back into a hazy reality. She ran—Carly never walks, never moves peacefully—into the hall and bounded into our room. Each step was a heavy stomp, her hands slapping at her sides. But her fiery energy packed a mean punch. She didn’t cry so much as bleat, a sound that immediately raised my blood pressure. What few words she had been able to form at three or four years old were long gone, replaced only with gestures and guttural noises. Perhaps forming words was more effort than it was worth, since gesturing, grabbing, and whining often produced quicker results. We despaired of ever actually hearing Carly’s voice. The effort required for her to utter even the simple nouns she once learned far outweighed the benefit to her; it was quicker and easier to point to what she wanted or use the binders filled with picture symbols of things other people’s mouths could prattle off without thought. Or perhaps as she developed, pathways in her brain—the complex network of neurons that told her mouth what to say—crisscrossed into a tangled mess, leaving her speechless.

She stood in the darkened room at the foot of our bed, stripped naked, and jumped up and down. She made the yelling and howling sounds that were her only form of verbal communication. I pulled myself heavily from my bed. “I guess it’s my turn,” I said sarcastically to my wife. She had learned that if she stayed in bed long enough, I would be the first to get up. This tactic left me with a double dose of resentment. I am not kind when I’m tired and aggravated. The sense of humor I often use to defuse a situation deserts me and is replaced with petulance. “It’s always my turn,” I throw in under my breath. I shepherded Carly from our room and back to the sea of destruction that faced me in hers. Compelled by some unstoppable, inexplicable force, Carly had pulled the sheets, pillows, and blankets from her bed and emptied all the contents of her dresser onto the floor. She was now on her bare mattress jumping and flopping about as if possessed. “Oh, Carly,” I said. I felt the creep of desperation in my stomach. This was not a new scene for me; it was one that played out over and over—almost every night. Carly’s behavior was inexplicable, and without language, a mystery.

I put the sheets and quilt back on her bed and plumped up the pillows. It looked inviting to me, anyway. “Carly, get back in bed,” I told her, a bit roughly. Although she complied, I knew this was the beginning of the day, not the end of a momentary disruption of the night. She flopped around on the bed as I sat on the edge trying to soothe her. “Shhhh,” I said, or was it a command at this point? I lay next to her, hoping to project an infectious calm.

“Think of something peaceful,” I suggested. “The ocean, for example.  A walk on the beach.” For me, visualization has always been a powerful ally. It’s hard to know if Carly understood this technique. I tried not to talk down to her. An attempt at soothing her to sleep felt futile; hadn’t I tried every trick I knew a hundred times before?  

As the fit subsided, I viewed the carnage of clothing strewn around the room. “You must make her clean up all of her messes,” the therapists had told us. “It’s the only way to discourage her from doing it.” I think they called it an “aversive”—a kind word for “negative reinforcement.” In this case, cleaning up was designed to be a consequence of her action, to discourage her from making a mess next time. But making Carly do anything she doesn’t want to do is a major struggle. For whom is the task really an “aversive,” then?

“Piss off,” I said to no one in particular; it seemed like the right sentiment. I was woozy with exhaustion. Not just a physical tiredness, but the type that comes from tedium, frustration, and anger. I usually can move beyond anger with some sort of catharsis, like provoking an argument or slamming a door, but this seemed like an inextinguishable fury. the only force keeping me moving forward was inertia—what choice did I have?—and a desire for normalcy.

Though my life often felt like I was bailing water from a foundering vessel with a teacup, I believed that if I was determined enough, consistent enough, patient enough—I could bring order to chaos.

I lay next to Carly as she drifted off only to be startled back to wakefulness with a twitching spasm. so we lay this way as the rest of the household slept. We had purchased a clock radio that played a series of Zen-like nature sounds. I stared up at the ceiling, and listened to the track trying to determine when one cycle of chirping birds and bullfrogs ended and the next one began. It was like counting stars. Something mindless I could do at two-thirty in the morning when I should be sleeping. Carly was finally quiet, though not sleeping, so I headed back to my own bed.

On a good night, I might have fallen back to sleep and cobbled together something that resembled a sufficient amount of rest to function the next day. But this night was not a good night. I was jolted again by a crash in the kitchen. I ran downstairs to find Carly standing on a chair in front of a food cupboard. Boxes of crackers and pasta, cans of soup and stewed tomatoes lay around her on the floor.

“God damn it, Carly.” the rush of emotion electrified my body. “Stop it. Just fucking stop it. I’m exhausted. If you want to live in this house, you need to get control of yourself,” I snapped. I had slipped into the bleak place exhaustion and frustration sent me. But I didn’t feel better after making these hurtful threats; I felt worse and worried that one day the threats may not be empty. This was not a sustainable existence, every night and every day, chasing Carly around the house, putting our things back together just in time for her to rip them apart again.

Several months before, Carly had snuck upstairs and filled the bath. We were unaware of what she was up to until we heard the flood of water pouring through the ceiling lights on the floor above. Another time, she smeared peanut butter on the den walls and furniture. While we cleaned up after her attack on the den, she grabbed a full container of baby powder and dumped it over the second-floor railing onto the carpeted stairs below. By the time Carly was seven, her uncontrollable movements and urges had taken on an untamed, destructive quality. Carly’s actions were not mischief that we would laugh about when she was older, such as the time Taryn gave one side of her head a haircut. It was like living with a raccoon in the house, and there were no signs of her growing out of it.

At three in the morning, I was in no mood for cleaning up. I left the debris on the floor and took Carly back upstairs, put her on the toilet, and cleaned her up. Back in her room, I remade the bed for the third or fourth time that night and got her back under the covers. This time I knew I wouldn’t be going back to my own room. Not tonight. I lay down next to her again, pinning her in with the blankets and the weight of my arms and legs across her. She sometimes likes the sensation of swaddling, but by this point, I mostly did it to hold her in place. I knew I wouldn’t sleep, but at least I wouldn’t be moving. Carly arched her back, screaming and flailing; the tight hospital corners my mother had taught me to make gave way as Carly sprang from the bed again. She jumped around the room yelping.

I considered getting Tammy up to give me some relief. This would have been a double-edged sword. Tammy wears her frustration much closer to the surface than I do. if she started yelling at Carly, I would feel worse than if I just dealt with this myself. Mothers are supposed to have limitless patience, but I know too well that this isn’t true. Tammy was drained. Her daytimes were not so different from my nights. She spent thankless afternoons shadowing Carly and navigating the mostly unchartered waters of caring for a child severely afflicted with autism. Hers was a relentless struggle to seek assistance from government agencies—help for battle-scarred families like ours to cope with what no family should have to cope with alone.

Then there was the matter of Tammy’s health. After years of struggling with cancer and colitis, she felt like an old woman although she was only forty. When I looked at her, I’d see a sadness that was not there when we first married. She often complained of an overwhelming sense of hopelessness. “I don’t see a way out of this,” she would say. But every day she persevered in her attempts to fix our daughter. “There really is little choice,” I told friends who sympathetically inquired about our situation. “What else can we do?”

And so I tried to manage these nighttime battles on my own as best I could. If there was an alternative to this hell, I couldn’t find it. On nights like this I found myself reflecting on the desperate case of a young mother, Dr. Killinger-Jackson, who had lived nearby.

On a sticky morning during the summer of 2000, she awoke early, took her six-month-old baby, and jumped in front of a subway car as it entered the local station. I had driven by the house owned by Dr. Killinger-Jackson many times before the tragedy. The house was, and still remains, beautifully landscaped and pristine. At night, I used to like to peek in the window as I passed because the interior looked so elegant and peaceful. I liked to believe that the house’s appearance reflected the lives of the people inside. Her death, and that of her child, was a sad and shocking story made worse by the fact that the she was a psychiatrist and the daughter of a psychologist who counseled those with depression. it seems that even experts in desperation are not immune to it.

Many were horrified by the story, but my wife often spoke empathetically about Dr. Killinger-Johnson. Not too publicly, mostly to me, she would say, “I can imagine what she was feeling. If not for Taryn and Matthew . . .” Then, eerily, her voice would drift off, ending with “I could never leave them motherless.” she would take a deep breath and steel herself up for the next challenge. She clearly empathized with the dark hole inside the perfect-looking life of our neighbor. We, too, had a house and life that looked tidy on the outside, but was a hurricane on the inside.

When Tammy would speak this way, a wave of nausea would flood over me. Not because she sounded irrational; in fact, it was just the opposite. Week after week of sleeplessness and exhaustion left me with little argumentative response. Because of Tammy’s resolve, her tenacity, and her stalwart rescue missions for our daughter, I never considered her dark fantasy to be a legitimate risk. In reality, when things got too awful, Tammy would just get in her car and drive around until she calmed down. It didn’t matter what time of night it was. And I just tried to breathe through it, not exactly praying, but repeating to myself, “Just let me get through one more night.” We had become masters of surviving Carly. Eventually morning ended the seemingly endless night; one that had never really begun. Light crept through the shades. Carly’s room filled with the happy tweets of the birds that nested near the small portal window of her room. I sat on the edge of her bed. It was close to five-thirty, and she was finally calming down, though still far from placid. Her room looked like a tornado had hit it. But by afternoon, Mari would have done her magic; everything would be back in its place, creating a temporary sense of order. Carly’s room would once again be a pretty one with custom-made pink and white drapes and a coordinated coverlet; an antique armoire and dresser with little lamps, picture frames, and figurines resting in the corners. It should, I thought, have been a room filled with giggles and “Sleep tight, don’t let the bedbugs bite,” not chaos and turmoil.

I rested my head on my hands. My face felt numb and rubbery, the way your lip feels after a shot of Novocain. I looked at my sweet, tormented little girl, her thick wavy hair erupting from her head, the big green eyes with long eyelashes, and her broad cheekbones. “So beautiful,” I whispered out loud. Inside I longed for something more. A father can give and give, but he wants something back. Just a hug. Or a silly malapropism. “Oh, Daddy! look at the slobber!” Taryn had once said, referring to the neighbor’s inflatable lobster floating in their pool. A smile and a sweet memory would be fair payment for all this.

I looked at her again; Carly was finally sleeping. Her breathing was calm and regular, her forehead damp with perspiration. I lay down gently next to her so as not to wake her, still longing for some sense of connection. I could feel my anger dissipate. There was so much I wanted for her, simple things, impossible things. “Carly, I want you to be calm and happy,” I whispered. “I want you to speak. I want you to play and have friends and go to school. I want you to accomplish something you will feel proud of. I want you to sit at the dinner table and share in the conversation. I want you to have a first boyfriend whom I will regard with skepticism, and then a husband whom I’ll welcome with open arms. I want you to have a life. I want you to know peace. I want . . .” I cuddled her closer. She was still just a little girl, soft and warm. She smelled sweet, like bath gel and shampoo. I drifted off to sleep.

Worry and sleeplessness are a toxic cocktail; one that many parents of disabled children drink all too often. What can we do to be calm, patient parents and suffer the arrows of sleeplessness? Assign nightshifts to one parent or the other? Hire night staff (who can afford that?)?  To us, it was an answerless riddle that was only solved with time.

The above excerpt, “Sleeplessness” is from CARLY’S VOICE by Arthur Fleischmann with Carly Fleischmann. Copyright © 2012 by Arthur Fleischmann. Published by Touchstone Books, a division of Simon & Schuster. Reprinted by permission. All rights reserved. Order your copy today (digital and print available).

Comments on: "A Parent’s Toxic Cocktail: Worry & Sleeplessness" (3)

  1. Lynn States said:

    Beautifully illustrated; I can certainly relate as a grandmother of two precious children who are autistic.

  2. Rodney Winstead said:

    Me & my husband Jim continue to suffer very similar episodes with our now five year old son. I/we are COMPLETLY lost!!!! I feel hopeless, sad, tired, scared, & fear for his own inner peace. We have seemed to try everything, and nothing works. It is now getting to the point of him hurting himself. We are parents that are lost in a space of complete unknown.

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