Parent in Crisis: Finding Peace and Purpose in a Special Needs Home

Chapter One

The Good, the Bad, and the Ugly

I

don’t think I will ever forget the sound of my son’s screams. There are few things I remember more vividly about those early years before he was diagnosed with his condition. Everything else sort of blurs together in a hazy nightmare. Of course, I remember the feelings—the fear, anxiety, guilt, loneliness, and anger punctuated by fits of panic, frustration, and self-pity—but those screams play over every memory like the world’s worst soundtrack. It was inescapable, relentless, and the one thread that tied each garbled memory together. On most days, it overwhelmed me.

Calling the sound a scream isn’t really doing it justice. It was more like a shriek that punched its way into every corner of our two-room apartment, building pressure like a balloon about to pop. The piercing sound stabbed right through me. It battered me from every side. It drove my thoughts, my words, and my actions. I lived in constant dread of the next screaming tantrum, so I would do anything to avoid it. Every day, our home was transformed into a battlefield as fear of the next bout clouded the time between meltdowns. Sometimes, his fits would erupt suddenly with no warning. Other times, his emotions would simmer slowly to a boil. When the tantrum finally struck, it was impossible to ignore, and those eruptions were the best indication that something was truly wrong with him.

I endured his tantrums for years. Sometimes they turned physical. Sometimes they posed a danger to both him and me, but they always included that bloodcurdling scream. His fits continued long after doctors settled on a diagnosis. They transformed with every new stage of his development, and they dominated our lives in the early years of his condition. Those memories still haunt me.

Public outbursts often drew a crowd, and the looks of judgment and pity were hard to miss. Those looks were even harder to stomach when they came from friends and family. My son and I were often locked in safehold wrestling matches—father versus toddler—at the most inopportune times and places. Attempts to buy groceries often ended with abandoned shopping carts. Events with friends and family usually ended in early exits.

No two tantrums were alike, but there’s one that stands out in my memory. This particular event began on the foul line of a youth baseball tournament that I was covering for a small, community newspaper. This was a weekend assignment featuring dozens of baseball games and family activities. As a sports writer and photographer, I was responsible for the story, the interviews, and all of the pictures from the event.

Early on the first day, my toddler was napping behind me in his stroller while I wheeled about my camera. It was a beautiful summer morning, and the air was filled with the sounds of baseball. I clicked away on my camera while my son slept comfortably behind me.

Around the fourth inning, I began to hear him rustling. Within a few minutes, he was fidgeting uncomfortably. His behavior wasn’t out of control, but as his fussing continued I could already feel the questioning looks from the parents in the stands. Who was this photographer with a baby at a baseball game? Having taken enough photos for the story, I called it a day. The interviews could wait until the next rounds of the tournament, and it was too early to compile any results. So I gathered my gear and quickly escaped the field.

By the time we reached our car, my son was thrashing about. As we pulled out of the parking lot, he began to cry. We lived just a few miles away, but as we turned onto our street his sobbing transformed into a wail. By the time we turned into our parking space, he was well on his way to a full-blown tantrum. Just as we stepped across the threshold into our apartment, the screaming began …

Over the next few hours, I fought against the tantrum with every tool in my arsenal. I fed him. I changed him. I drew the shades in his room, and I tried to comfort him on his bed. But the shrieking continued. I rocked him in my arms, tried massaging his joints, and sang softly in the darkened room. The screams never wavered. He ignored the deep breathing exercises. He began to fight off the hugs. Lullabies weren’t working, and he became impossible to soothe. The only thing that didn’t change was the screaming. If anything, it grew louder.

As the fit wore on, my patience began to fail me. My neighbors had yet to complain, but I could picture them frustrated by the muffled screams through our paper-thin walls. Should I turn on some music, or would that just add to the noise? Worry turned to frustration. Anxiety turned to anger. Fatigue began to settle in, but the screams continued. At this stage, my goal had shifted from comforting my child to stopping the tantrum at all costs. It’s a subtle shift that happens the longer a parent and child are locked in a tantrum. I was no longer concerned about his needs or his state of mind. I was only focused on mine.

We were locked in a head-to-head battle. I screamed back at him, nose to nose, to try to shock him into sanity. I made threats and desperate pleas that he couldn’t even understand. At one point, I stormed out of the room and slammed the door, threatening to leave. Of course these manipulative arguments didn’t work. How could they possibly work with a child who has limited language skills? But at this point of the ordeal, I wasn’t thinking straight. My strategies made perfect sense to me. I can’t imagine how that must have seemed to him. With every stage of his tantrum, my behavior became more erratic as I engaged in a fight-or-flight battle with my own child. Every effort to calm him failed. I was bloodied and bruised, but his tantrum continued. So did mine.

Still, his screams continued.

Eventually, the tantrum turned physical, and I spent the next hour fending off his attacks. He clawed at my face. He hit me with his fists and feet, and his attacks were relentless. It always surprised me how strong a toddler can be when anger turns to rage. Self-defense became a full-time effort, and I was getting tired—physically and emotionally—yet I kept fighting off his punches and kicks until they beat me into a state of desperation.

Finally, I surrendered. I still remember that overwhelming feeling of guilt and uselessness as I closed the door behind me, hoping that he’d tire himself out in the dark. I stumbled down the stairs to my living room, but I didn’t even make it to the couch. I barely reached the coffee table where I sat with my head in my hands, engulfed by his screams. Totally defeated, I stared hopefully at the door, praying for the hard knock from police that might bring an end to the ordeal. Had someone seen me through my window, it would have been hard to figure out why I was doing nothing about my screaming child. Had someone witnessed my behavior, they might have stepped in to stop it. They might have called some authority to remove my son from my care. In that moment, I probably would have welcomed it.

I was exhausted and angry. I was completely detached from his suffering and deaf to his screams. I no longer cared how long his tantrum continued. I can’t remember how much longer it took before his tantrum began to lose its steam because I had already lost mine. At some point it stopped, and my son fell asleep. At some point I fell asleep, too. I never made it into my bedroom. I woke before dawn, still dressed on the couch, and trudged upstairs for a few more moments of rest before the alarm signaled another day. Thankfully, the screaming had stopped … for now.

My case isn’t unique, and this incident wasn’t even his worst. Battles like these can be common occurrences in special needs homes—especially at the start of the journey. Sometimes they might stem from some sort of precipitating event, but they often seem to explode out of nowhere—like this one. There was nothing about the baseball game or the beautiful morning that could explain the tantrum that followed. No matter how many times I’ve replayed it in my mind, I still can’t figure out what sparked his crisis.

Most of the time, I could outlast him. Sometimes, my efforts would calm him. Occasionally, I could step in and make a difference, but there were just as many failures as successes. There were times when I would overreact, and others when I would just shut down. There were even frequent temper tantrums from me. When I reacted poorly, the episode was always followed by some sort of emotional hangover. For hours afterward—and even days—I would be tormented by feelings of guilt, self-pity, and inadequacy. Sometimes the hangover was interrupted by the next outbreak, and the process started all over again.

On the other hand, this particular screaming incident marked a turning point for me. By now, it was clear to everyone that my son was struggling with his developmental crisis. We had already begun the long journey from doctors and specialists to preschool teachers and psychologists. There was no question that my son was in crisis as we fought to understand his condition, but this particular tantrum marked the first time I realized that I was in crisis, too.

I could try to pretend I had everything under control. In fact, I often portrayed myself as a calm and collected father when I was out in public. I had already developed a reputation among my friends and family for my patience and tolerance, but the reality was that there was a storm raging inside of me as I tried to manage my son’s difficulties. I felt like a fraud because I was clearly struggling as much as he was. I was in a perpetual state of stress. I was carrying the weight of the world on my shoulders. I was constantly out of balance. I seemed to be in conflict with everyone and everything—including myself. I was usually annoyed, full of fear, and ready to explode at any point. There were moments of crisis that I couldn’t hide, but there was a constant state of crisis just below the surface. My life was spinning out of control.

I didn’t talk about my problems because I was sure that nobody else would understand them. How could they when I didn’t understand them myself? Fears about my son’s condition were compounded by the growing uncertainty in my own life. Confusion, anger, anxiety, guilt, and worry dominated my thoughts. My work was suffering. My personal life was in tatters, and I dreaded any sort of event outside the home. On the rare occasion that I did reach out to family or friends, their responses were always filled with unsolicited advice that just drove home the point that they didn’t understand our problems.

Like most special needs families at this stage, I was isolated and depressed. But asking for help was still difficult because of fears about what people would find—with my son, with me, or with our living conditions. Underlying everything was the fear that people would judge me, and I’d lose my son. Despite all of our struggles, challenges, and frustrations, my love for him was as deep as any parent’s love for their children, so the fear of losing him was very real to me. It pushed me even deeper into isolation.

This was supposed to be the phase in a child’s life where his language was blossoming. The world was supposed to be coming into focus, but my son was lagging way behind the curve. He couldn’t ask for food if he was hungry. He couldn’t ask for toys, for comfort, or even for his parents. His confusion manifested in fits of anger and frustration. My son was clearly in crisis, and that was heartbreaking.

The truth is that I was perpetually on the brink of some sort of emotional crisis, too. Whenever the tipping point came, I was often at my worst. I could be loving and tolerant for very long stretches, only to have it evaporate in an instant. I could be self-sacrificing and patient through all sorts of trials, only to lose control over something trivial. I could devote hours of the day to his needs. I could balance extraordinary pressures with work duties and my family life. I could demonstrate countless examples of poise and dignity for days on end, only to have it come crashing down in a moment of weakness. It didn’t seem to make any sense. I could handle something easily, multiple times, for long periods of time. Then, out of nowhere, I’d suddenly shift into a sort of self-defense mode over something unimportant. At my best, I was unpredictable—even to me. At my worst, I was selfish, unloving, and controlling.

It didn’t start out like this.

When my son was born, I was earning a good living, enjoying a happy marriage, and experiencing the excitement that comes with a first child. He was born within a month of two close cousins, and at first it seemed that everything was normal despite a rough birth and some early physical issues.

In my mind, there was a healthy competition between my son and his cousins as the three of them were hitting those early milestones. At the time, I enjoyed the unfounded pride that came as my son led the race. He was the first to hold his head up, the first to push himself around with his arms and legs, and the first to hold toys. He was the first to roll over, and the first to sit up on his own. At nine months, he had already begun walking and climbing, while his two young cousins were just beginning to crawl. Even though some special needs parents face struggles right from the start, my experience during those first few months was fairly normal. The future looked bright.

But as advanced as he was with those physical milestones, that doesn’t paint the full picture. While his cousins were smiling at their parents, pointing out things in their cribs, and fiddling around with toys and stuffed animals, my son wasn’t showing any interest in the world around him. While his cousins were cooing and babbling, he was sitting silently for long stretches of time with an attention span that would rival any adult. It soon became apparent that these were symptoms of some larger issue. As his cousins were piecing together sounds on their way to their first words, my son began alternating between two extremes—silence and screaming.

He was struggling to communicate, making slow progress toward language, and losing those hard-fought skills almost instantly. He had trouble fixating on people, toys, and objects, and he began to repeat behaviors that were unhelpful and abnormal. Social situations brought high levels of stress, and he rarely engaged with other people. He had no interest in other children, playing games, or interacting. He resisted any change to his environment or his routines. My early confidence began to melt away, replaced by feelings of anxiety and jealousy.

I wasn’t a bad parent, but I didn’t feel like a good one, either. I was fortunate to have good role models because I grew up in a household built by honest and self-sacrificing parents. They weren’t controlling or limiting, and they fostered an independence with their children. They allowed us to make mistakes, learn from them, and grow. They didn’t take our sides automatically when troubles arose in the backyard, on the school bus, or in the classroom, but they made us accountable for our part in any disagreement. They didn’t always defend us blindly when fights arose, but they always seemed to have our backs when it was necessary. They weren’t perfect, but even in their worst moments there was no question that I was loved. Through their examples, I forged my own ideal about parenting, but in my own family that perfect ideal often felt out of reach—especially in those moments of stress and confusion.

As my son’s special needs began to manifest, I began to stray more and more from my perfect ideal. It was subtle at first. Someone would ask about his progress, and I would lie for no reason. Later, I would worry and fret, while I second-guessed every decision I made. The more he fell behind, the more I threw myself into fixing his problems. I began to hover over him, instructing him constantly, and redirecting him at every turn. With good intentions, I began to instruct and redirect anyone who stepped into our circle. I’d act as interpreter, intermediary, and judge for anyone who came close to us. But the more I tried to control our environment, the more it spun out of control. Over time, I began to develop complex schemes to head off his tantrums before they started. I began to structure his environment with an almost military precision. My sole aim was to keep him happy, well rested, well-fed, and entertained, so that he might avoid another relapse into screaming, punching, and scratching.

My efforts seemed to be supported by everything I read and everything I was told. But, more and more, my efforts at structure were met by my son’s rebellion. The more we depended on routine, the less either one of us seemed to be able to handle change or interruptions.

Our peaceful household was beginning to show its cracks. My son’s peace of mind was the first casualty, and his parents weren’t too far behind him. Without language skills, my son’s frustration grew. Temper tantrums became commonplace. They appeared quickly and lasted for hours. Irritation and fatigue spread like a disease throughout our once happy home, and it began to chip away at our marriage. In the beginning, we were a united front. But as our child’s struggles continued, we began to grow apart. Competitions emerged over parenting styles, problem-solving strategies, and philosophies about our future. Power struggles and disagreements appeared as the stress level increased. Our home life became a competition that nobody was winning, and the more I tried, the more I struggled.

The isolation was overwhelming. I felt trapped in my apartment because leaving was so difficult. Just a simple trip to the grocery store required extraordinary preparation. Even at family gatherings, I was forced to leave early when his inevitable tantrum would erupt. It was hard to take walks in the neighborhood, visit with friends, or find a sitter who was willing or able to handle his needs. I felt like a prisoner and a bad parent. I know that many parents feel this way at times, but it takes on a whole different level in special needs families.

My son began to get referrals for developmental specialists, speech experts, and psychologists as we were hurtled down that frightening path toward a diagnosis. They tested his hearing. They measured his reactions. During a scary two- or three-year journey, experts tested just about everything, and the whole process took on a strange momentum. Occasional victories were followed by even bigger setbacks. Symptoms were ruled out or discovered. Three- and four-syllable words introduced by doctors became more common than my son’s attempts at first words or simple sentences. It took a trip to our state capital to have a specialist finally settle on a diagnosis. When I heard the word autism, it sparked a whole other round of doctors and psychologists—and a whole new set of worries, resentments, and anxieties for me.

His diagnosis opened up a world of assistance as my son began to get the support he needed. But as they descended upon our home, it made me feel even more insecure, isolated, and useless. Of course, it felt selfish to think that my needs were just as important as his, but they were. I couldn’t sleep. I was constantly in a state of worry, and I was feeling more and more isolated from my friends, my family, and even my son’s mother. I’m sure she felt the same way.

By the time my son turned three, our lives had completely transformed. My marriage had crumbled, and one struggling household was suddenly split into