For the love of my son and his dog—an autism story

2022-08-08 05:22:54 By : Ms. Janey Hu

World-class journalism, storytelling, and commentary from a secular perspective.

My heart pounded as I drove slowly around bumps in the road to keep his body from shifting in the little bed on the floor next to me. At every stop, at every slow moment, I lowered a hand to his soft belly to make sure he was breathing. Tears hung in my eyes. I feared the worst. We’d gotten a dog to help our son Timothy during dark days when we were at a loss for how to help him ourselves. But Polo also held a large piece of my heart.

After years of disruptive behaviors at school, Timothy faced expulsion from his fourth-grade class. That day, I sat at the round table in his principal’s small office, reminiscent of all of the cramped, tense, spaces over the years in which I’d faced administrators who’d had enough.

“You have got to do something about your child,” she said, gripping his file.

My eyes drifted out the window to the lush eucalyptus and oak trees of my own neighborhood, their branches blowing gently, shading the children who played beneath their protection. Timothy had taken two complete neuropsychological evaluations and a full school assessment by then. He’d had occupational therapy and psychotherapy, and a psychiatrist had put him on medication. Yet, his diagnosis was still in doubt. Words and abbreviations like ADD, ODD, early bipolar, DMDD, anxiety, and depression were in the mix. But no one would commit to an explanation of my child’s behavior.

My chest seethed with anger, pressure rising in that place between my eyes where the headaches blossomed when the stress became too much−as it had so often in the three years that my son had been struggling.

“What more would you have me do? I’m not the expert. You are. When a patient comes to me with high blood pressure, I don’t ask him what he is going to do about it. I guide him. Please tell me what to do!” I exploded, sending words like shards of glass in the direction of the stone-cold face in front of me.

The principal pushed away from her desk and stood up. Instead of answering my question, she moved to end the unpleasant meeting.

“I’m sorry Mrs. Makoff, I need to think about the other students. Parents are upset. As of today, Timothy is suspended from school.”

She reached out to shake my hand but I had already turned my back, my legs shaking as I walked away, out the door into the shade of the courtyard as tears poured down my face. In the car, I dialed Timothy’s psychiatrist, Dr. Spanos. We agreed it was time for a partial hospitalization, but we’d been told it would take months to secure a spot.

Then a miracle: A spot opened up, and we grabbed it.

At the two-week mark in this program at UCLA, the team finally had a breakthrough. After being perplexed by this verbal, smart, sassy kid who antagonized everyone, an educational psychologist had a hunch and administered the ADOS (Autism Diagnostic Observation Schedule). Her suspicions were confirmed. Timothy had autism, a diagnosis that every other psychologist, clinician, and educator (other than Dr. Spanos, who had her suspicions) declined to make.

After being perplexed by this verbal, smart, sassy kid who antagonized everyone, an educational psychologist had a hunch.

I was beyond relieved. An explanation at last. Now they knew how to treat him, how to support his growth.

Every morning before we arrived at the concrete hallway of interconnecting classrooms, carefully locked and unlocked throughout the day to allow maximum control of small but often turbulent bodies, Timothy and I had breakfast at the hospital cafeteria. The air had the lemony antiseptic scent of the hospitals where I worked as a doctor when I wasn’t on paid family leave. It mingled with the sweet smell of the thick slices of French toast and the grease of the bacon that Timothy inhaled, his pale freckled face set in a smile, seemingly pleased with this daily buffet, and perhaps with my undivided attention. Sometimes he got impatient in the long lines at the cashier, the place filling up with harried doctors and nurses in scrubs, part of me crumbling inside as I watched them living the lives I thought they had─imagining things were simpler for them.

“C’mon, Mom!” he’d wail, drawing attention and some irritated looks, including echoes of Principal I-Don’t-Care. The words You have to do something about your child rang in my head. That’s why we are here, I murmured to myself. It’s amazing how we all judge others without knowing their circumstances.

And while the hospital program produced a diagnosis, and understanding of the kinds of supports Timothy needed, and new medications, the behavior changes were still not enough for him to thrive at a new school that specialized in autism. Within months after discharge, his actions became harder to handle, his mood deeply depressed. Eight weeks was never going to be enough for any real change. It was merely the artificial time frame for which insurance would pay.

When Timothy was released from a second partial hospitalization to start yet another school, one that touted its expertise in managing behavioral issues, we started to look for a puppy. We’d heard therapy dogs helped children on the autism spectrum feel more secure and less anxious, anxiety often resting at the core of behavioral challenges. We were hoping to raise Timothy’s spirits and enable him to feel the pride of caring for his own pet. One of the many things we came to understand from the experts we finally found was that despite Timothy’s blustery presentation, he had very low self-esteem, in part because of the trouble he’d gotten in when acting out the chaos inside.

The day we got Polo was a dry, hot, Los Angeles day, just before Easter. My husband Steve and I drove Timothy into the San Fernando Valley. We weren’t sure we were ready to care for anyone or anything else. I hadn’t been a dog person before. I thought it was conceivable that we would just look at puppies and not come home with one after they snuggled into your neck, their hot breath and sweet smell irrepressible and intoxicating.

We walked up the driveway leading to the boxy home and rang the bell. Inside, the sound of barking gave way to a large boom and clatter followed by high-pitched whimpers. A friendly but disheveled woman answered the door, apologizing for the mess of toys and dog droppings on the carpet. A boy about Timothy’s age peered around the corner. I thought I felt her pain, being in over her head. She lifted the garage door to reveal several pens of tiny furry creatures, all seeming to angle for attention as they tried to climb the sides of their enclosures.

Timothy picked out the ones he wanted to hold. We scooped them up, one by one, and gave him a chance to nestle them into his neck while he supported their fragile bodies with care. I saw joy light up my boy’s face in a way I hadn’t seen in years, his smile gentle and open, engaged in the moment. This was a big deal. So many parts of living had become incomprehensible to him. As we watched Timothy in the small folding chair, shining in the love of a dog, Steve and I found hope for the first time in years.

In his hands was a tiny, messy, sandy-haired pup with odd brown and white wiry tufts sprouting in irregular patches.

“Are…you sure?” Steve asked. We both repressed loving laughter at the site of our outside-the-box son choosing the most unique dog.

And so Polo entered our lives, becoming Timothy’s rock through the wrenching days that followed this moment of reprieve in the Valley.

Within months at the new school, at an IEP (Individualized Educational Plan) meeting, with the latest principal—a diminutive blonde who was new at her job, and while well-intentioned, in over her head—I was again informed Timothy needed a new option.

The school district sent over a home school teacher. Timonthy refused to meet with her. We worked with a behaviorist in an attempt to get him to do any work at all. But even the carrots of Dodger games and Disneyland failed. He even got irritable at his favorite places and wanted to come home. His obstinance and sadness shattered my heart. He isolated and pushed everyone away.

When he even lost his tenderness with Polo, whom he needed more than anyone, we knew it was crisis time.

Timothy’s two older siblings hid in their rooms for fear of damage to their belongings to avoid the desperation that had swallowed our home. They too had grown fragile. And though I tried my best, there was no protecting them from what our lives had become. We all had broken hearts. We needed a complete overhaul. I was afraid someone wasn’t going to make it. At that point, any of us could have succumbed to the deep devastation that had hollowed us out.

We made the impossible decision to transport Timothy to a therapeutic residential school in Utah. It was our only remaining option. Designed to ensure his safety, the transport process consisted of two large teddy-bear men coming to our house at midnight on August 31, 2017. I quietly entered Timothy’s room and sat at the side of his sleeping body. I tapped him lightly: “It’s time to go, Timothy,” I whispered as I rubbed his back, trying not to collapse on top of the still U of his body.

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As if he had been waiting for this moment, Timothy woke up with a sigh and simply said: I know.

We loaded him into the big truck with the big men. Wrapped in his Thomas the Tank Engine comforter with a stuffed dog in his hand—a stand-in for Polo whom he was too sad to see before he left—Timothy said goodbye. At the advice of the school, Timothy did not know we were following behind in a car and would meet him in Utah for the transition with a suitcase full of winter clothes and anything else he could need. An hour or two in, he was given a letter we’d written to tell him we’d see him soon and how much we loved him—and that all we wanted in the world was for him to come home soon.

Steve and I took turns driving the nine hours from LA, crying as we passed the enormous red rocks that jutted across the western sky from Nevada to Utah. I could barely see for the tears and the disbelief that my 12-year-old was going away. As hard as things had become, it was like losing an arm or a piece of my soul. The loss felt so unimaginable, so unnatural, yet unavoidable. We knew that we needed this to survive.

As much as we would have loved for Timothy to have Polo to get him through those months away, Steve and I were relieved to harness some of that dog comfort for ourselves. The other kids were attached to Polo but saw him as Timothy’s dog, and projected on him the mixed feelings that the last years had evoked.

We got a second dog for that reason. We went “looking” and came home with Bowie. The small red-haired dog with the floppy ears and enormous paws melted me as Polo had just months before. We surprised William and Caroline, who were instantly smitten. Bowie took to sleeping on Caroline’s red carpet, snuggling into her shoes. William hosted pet therapy parties where circles of girls cuddled our adorable new addition.

When Steve and I returned from Utah and entered our home that had been so in need of peace, we were wracked by the pain of severing our son from everything he’d known, and the fear that he would disintegrate from the trauma. Escaping the emptiness, we drove to the beach where my parents had brought the children, where the beauty of the aqua waves and the hanging mist touched me so deeply that new tears fell. I crashed into Caroline whose 15-year-old self expanded to meet the moment as she comforted me: “It’s okay, Mama. You did everything you could. Timothy’s getting the help he needs now.”

We lay there on our towels for as long as it took to settle down, wrapped together, crying softly as the water came and went, the rhythm soothing our injured hearts.

In those eighteen months that Timothy was away, Polo became our therapy pet. As Steve and I spent evenings on the couch trying to maneuver through the new normal of quiet, the weekly therapy sessions on FaceTime, the monthly visits to Utah, and the tending of our family’s wounds, the small presence of Polo circling and nestling next to us, spooning in bed, became integral to our healing. Just seeing the rise and fall of Polo’s chest, eyes closed, on the wood floor of my home office caused a rush of warmth and love.

And while my own chest hurt every day until we drove Timothy home past those same red rocks in the spring of 2019, in some incandescent way, Polo’s gentle presence gave me hope for a better future with Timothy at home.

Just past the two-year mark of Timothy’s homecoming, I was starting to heal. The cave in my chest, created and deepened by every struggle since first grade, was filling in with lightness and air. Timothy was going to his small specialized school getting A’s and B’s. He was getting along with the kids and working with a therapist. By this time, William was off in college and Caroline was busy with friends, so Steve, Timothy, and I spent nights together now on the couch. Timothy was clear he wanted us to all be together those nights, making up for lost time.

But In June of 2021, Polo started to wobble. His legs were giving out. He started to yelp when touched and avoided climbing stairs. I started to panic. I was terrified, devastated at the thought of losing this dog who Timothy was now able to tenderly love, who had been a source of unconditional love for all of us, reminding us of all we had weathered and how love had kept us from falling apart.

In his time away, Timothy started learning about taking others’ perspectives, about regulating his emotions, thinking about what he wanted for his future. His brain was maturing and he arose from the heavy, self-destructive place where fear and his neurologic makeup had held him captive for so many years. My children were moving forward, and I needed Polo to survive. I wasn’t ready for another loss.

At the animal hospital, I handed over our raggedy dog with the still-crazy hair to the on-call nurse. By the next day, we learned he had a potentially life-threatening auto-immune disorder that attacked the lining around his brain. His response to steroids would be the critical measure of his chance for survival.

The dog whose love had saved our family was in trouble himself.

We hunkered down at home, Steve and I sitting around the blue tile table under the bougainvillea in the courtyard of our typical California Spanish-style home. We tried to hide the depth of our worry but Timothy understood what was happening. Every so often he came out of the house and wrapped his arms around me, pressing his face into my neck, his warm breath heavy with fear of a loss too great to fathom.

Two days later, I returned to the hospital to bring Polo home. He was hesitant but upright.

“He’s a new dog,” the vet said with relief. “He responded really well to the steroids.” While she was clear that things were still uncertain, he’d passed the first test. If he continued to respond to treatment, we could have him for many more years.

I placed him back in the small bed on the floor of my car. And while my worry wasn’t gone, the return of a spark to his eyes and attempts to climb out of his nook, allowed my anxiety to ease.

I knew there were no guarantees. But for a moment, as we drove over and down the steep hill that seemed to pour into the glittering ocean below, I was overcome by the beauty that sometimes can live on the other side of darkness.

Eve Louise Makoff is an internal medicine and palliative care physician. She has published essays and poetry focused on both narrative medicine and personal topics. Dr. Makoff is studying narrative medicine... More by Eve Makoff