Out of the Woods
A life-altering diagnosis sends a family in search of a place to call home
by May Cobb
When our son, Johnny, turned 10 months old on Mother’s Day, he babbled his first words to us: “Mama-mama-mama.” It was the most exquisite Mother’s Day gift ever.
But soon after that, silence. No words. His pediatrician had detected fluid in both ears, and we theorized that might be the cause. Because surely—I hoped as I lay awake in the middle of the night, my thoughts boiling like a disturbed ant bed—it was only a speech delay and not an indicator of something more serious.
Months later, though, still no speech. And there were other red flags. Not a total lack of eye contact but nothing sustained either. An interest in watching the ceiling fan whir. Not waving when someone waved to him.
I remembered once driving from our one-story tract home in East Austin down Burleson Road through the industrial district to take Johnny to preschool and seeing a billboard for the organization Autism Speaks. On it, a giant puzzle piece and a call for parents to look for symptoms. My stomach clenched, though I’d been reassured by his doctor, and by others I trusted, that he was far too young for such a diagnosis.
Finally, at his 15-month well-check, I pressed his pediatrician: Do you think he’s autistic? Her normally calm manner turned distressed.
“It’s too early to say for sure, but at this point,” she said, her face turning the faintest shade of scarlet, “I’m not comfortable with taking a wait-and-see approach.”
She wanted him to begin speech and occupational therapy, but we were on a tight budget. My husband, Chuck, was a full-time server at Salt Lick BBQ, and I hadn’t returned to work since my pregnancy, staying home with Johnny and trying to forge a path as a writer. His doctor suggested Early Childhood Intervention, a state program that sends therapists out to your house to work with your kid.
Before she retired, my mother had been the director of ECI in Longview, and I had much admiration and respect for the organization. So, for months, therapists would drift in and out of our home, helping Johnny with gross and fine motor skills, and also speech. I would press each one: Do you think he’s autistic? Finally, one of them replied, “Would you feel better if you knew he was?”
I think I would have, but I was also leery of attaching a lifelong label to Johnny when I still had hope it was something else.
Not long after Johnny’s second birthday, in the scorching summer of 2014, Chuck and I itched to leave Austin. After nearly 20 years, we wanted to move back to Longview, where we both grew up in East Texas.
Perhaps being around family, we reasoned, might help our child blossom in the language department as well as offer us more support. Maybe all Johnny needed was to be surrounded by familiar, loving faces to promote speech and social skills.
But there was something else nagging at us. Something we were growingly increasingly concerned we wouldn’t be able to give Johnny if we stayed in Austin: a free-range childhood that mirrored our own.
We bought our house and postage-stamp-size yard in 2008 and watched as new Austin sprung up all around us. Each day brought more cranes, more incoming U-Hauls, and, with a toddler in tow, more pressure to keep our existence afloat in a rapidly swelling city.
The parks that had once felt verdant and lush had now yellowed from the recent drought and teemed with tight crowds. We grew wary of the harried packs of parents hovering over their young children on the playground.
I started to yearn for the expansive freedom of my childhood in East Texas. I thirsted, I realized, for Johnny to experience a taste of my own untethered youth, as well as the anti-helicopter style of parenting that my own parents had employed in the late ’70s.
Summers spent swimming with my sisters off the dock at the wooded lake while my mother and father relaxed up on the grassy hill in a hammock. Us riding our bikes—unattended by adults—through the tangle of streets in our neighborhood, our calves muddied by the red-clay creekbeds we used to wade through. My best friend and I riding in a flat-bottom boat through marshy Caddo Lake as 10-year-olds, checking trotlines in the middle of the night. Me, at 5, packing blood bait on the sharp edge of my fishing hook at my grandparents’ small, stocked catfish pond, while later running free in their horse pasture as my grandmother stood in her galley kitchen breading and frying my catch in her cast-iron skillet until the skins of the catfish crisped into a golden shimmer.
None of this seemed possible in Austin, the city I had grown obsessed with and lovingly called home since I first came to college at the University of Texas in 1996.
The lush, hauntingly beautiful Piney Woods of my childhood were calling me. The deeply forested zone of Texas, with its velvet-smooth floor of slick red clay and turrets of pine trees that snuff out the sunlight and shed cones the size of large fists, was grabbing me.
Chuck was also feeling the tug, the siren call of home. On a recent visit back, we’d swum in his brother’s pool and watched in longing as his kids roamed their neighborhood, free to come and go as they wanted. We pined for the soles of Johnny’s feet to be blackened from running the streets alongside his cousins, to taste the freedom that a small town could uniquely give.
We craved what Sara Zaske wrote about in her book Achtung Baby: An American Mom on the German Art of Raising Self-Reliant Children, which was a much more relaxed style of parenting that would allow Johnny to be independent.
And most of my side of the family was still there, too. My parents, who had divorced, each have their own place. My mother promised to transform her back patio into a preschool playground and my father has an expansive backyard like a park, complete with a swingset he built from a T-bar. Also, my older sister and her husband and their kids live in a log cabin out on the wooded lake of our childhood, Lake Cherokee, just 20 minutes from Longview. Everyone got something out of the deal.
On State Highway 31, along the route from Austin to Longview, there’s a shifting point, an invisible veil that one traverses where you’re between Central and East Texas.
For me, that moment is a very specific point on the road, where the dove-gray highway curls upward and crests a hill near Hubbard, and the landscape begins to shed itself of craggy scrub oaks and mesquite, giving way to ancient sweetgum trees and ropes of wild muscadine vines that strangle weathered fences. The atmosphere itself begins to change—the arid climate dissolving into an air so humid, dank, and fragrant that it sticks to your clothes.
That’s the point at which, in the fall of 2014, the knot in my chest began to loosen. We were heading home.
We moved into a modest house a mile from my mother. For the first year, being back felt like stepping into a warm bath: calming, relaxing, soothing. Our neighborhoods were connected by Cargill Long Park Trail, a 3-mile walking path through a towering pine forest. I had spent summer days of my teenage years taking this same route to friends’ homes. The blacktop path curves over rolling hills and wooden footbridges across gurgling, moss-covered creeks. I could buckle Johnny in his stroller and in 20 minutes arrive at my mom’s front door without having to dodge the bike and jogger traffic of Lady Bird Lake in Austin.
We exhaled. Life was simpler, cheaper, and richer with our family around. We enrolled Johnny in a nearby preschool a few mornings a week and settled into a quiet new routine.
My mom kept Johnny on Wednesdays so I could focus on writing my first novel. She also swung by some afternoons and took him to gymnastics class. When winter arrived, she got him enrolled in horseback riding at a hippotherapy center.
On odd days, I would drop him off at my father’s house. This allowed me to run errands while Johnny rambled around the perimeter of my father’s sprawling back lawn, which he loved. Being able to explore in nature has always soothed him.
There were 45-minute drives north with cousins to the town of Daingerfield, where we’d spend all morning plucking blueberries in a field the color of jade stone at Greer Farm, a pick-your-own-fruit place featuring a restored 19th-century farmhouse and private cooking classes.
There were outings in my sister’s ski boat, Johnny tucked in my lap as we raced across the choppy waters of Lake Cherokee, his strawberry-blonde hair whipping in the wind.
Hope bloomed in my chest. I could visualize Johnny’s future spreading out in front of us as effortlessly as maple syrup.
He was a star on the balance beam in gymnastics; loved riding his horse, Champ; and most importantly, came to know the faces of loved ones. I could see him thriving in East Texas, and perhaps one day being independent enough to ride a bike to my mom’s or go hiking in the woods with his cousins.
He was also progressing in therapy, but he was still nonverbal. We decided to get him on a six-month waiting list to be evaluated for autism at a center in San Antonio. Call it mother’s intuition.
After a year of living back home, something shifted. Johnny began having tantrums.
A friend dismissed this as him being a “three-nager,” but I was skeptical. One day while I was shopping with him at Target, he became so agitated that I couldn’t physically get him back in the seat of the shopping cart. A woman nearby rushed over and helped me coax Johnny back into the seat.
“My son is autistic,” she said, patting me on the shoulder. “He’s 16 now, but I remember these moments.”
Then the calls started coming from his preschool. At first, they were minor calls to come and pick him up early. He was fussy, they told us, and wouldn’t calm down enough on his plastic mat to settle into a nap.
Then the calls became frequent, more urgent. Johnny had begun to tantrum in the classroom. First, they were only minor meltdowns like any other kid might have, but then they became more intense.
Finally, his teacher, who had been so very wonderful and patient with him, called a meeting with Chuck and me and the director of the preschool.
“I don’t think we can serve him anymore,” his teacher said, tears wobbling in her eyes.
“But why not?” I asked, not wanting to hear the news that I would have to find him a new school when everything seemed to be going so well.
“I think he needs to be somewhere that’s specialized in what’s going on with him.” Her voice was thin and reedy, and I could tell she was handling this with as much delicacy as she could.
It was a blow that would later turn into a blessing.
The intensity of the tantrums steadily escalated. Thrashing on the floor when he was upset, striking his head against the hardwoods. It became increasingly challenging for one person to handle him on their own.
So that Chuck could continue working and I could continue writing, my mom volunteered to keep Johnny a few days a week at her house. She’d fill up the pair of blue plastic kiddie pools on her back patio, stock them with water toys, and let him soak in the water while playing with the garden hose.
But one day while he was having his snack of dried cereal, he hurled the ceramic bowl against my mom’s wall, where it exploded into pieces.
She called us over to the house. She was shaken. The three of us sat around her living room contemplating what to do next while Johnny dozed on the love seat. My mother couldn’t handle him on her own anymore. Neither could my father.
At our appointment in San Antonio, we got the dreaded, though no longer surprising, diagnosis. After that morning at the autism clinic, we traveled to Austin for the night. We took Johnny to a park just south of downtown. Even though I knew the diagnosis had been coming, the news still shook me hard. While Chuck carried Johnny around the park on his shoulders, trying his best to keep the mood buoyant for Johnny’s sake, I took a moment and stood on the grassy mound in the park, gazing over Lady Bird Lake, letting the tears fall.
That night, back at our Airbnb, Johnny started banging his head against the wall with a force Chuck and I had never witnessed before. It was terrifying.
Dismayed and not sure how to handle it, we headed back to Longview the next day. Halfway home, Johnny’s skin boiled with fever, and he began to have diarrhea.
Lab work at a doctor’s office in Longview would confirm he had a gut infection, the pain of which had triggered the extreme headbanging, which escalated once we got back to East Texas. We’d only learn later about the connection between the self-injurious behavior and the gut pain. And how, with autism, if one doesn’t know how to properly manage the behavior—like us, who were so new to it all—it can become reinforced, become a pattern.
When we received his diagnosis at the clinic in San Antonio, the doctor recommended 40 hours per week of intensive ABA therapy (Applied Behavioral Analysis). In Longview, though, there was only one clinic that offered such services, and it was brand new.
In Austin, there were at least 20 therapy centers to choose from at the time, and it became startlingly clear that we needed to get back there as soon as possible. Our dream of giving Johnny the childhood we longed to would be limited by the scarcity of services in rural Texas. My once lofty notion of raising him in an unhelicopter-parenting way was nothing more than cruel irony at this point.
We would not be able to not hover over him like we had witnessed parents at Austin’s playgrounds doing with their own kids. Instead, we needed to rethink our whole approach to what his childhood would look like. Such a diagnosis calls for intensive parenting. This meant keeping Johnny safe from self-harm, while also learning how best to address his acute developmental delays and guide him forward.
Still in Longview, Johnny was banging his head for several hours a day while we raced to block it or drove him on endless car rides so that he was safely nestled in his car seat. Soon, we began packing to move back to Austin.
It was heartbreaking to say goodbye to family when it felt like we’d just arrived, but we were medical refugees.
When we arrived back in Austin, there was still a six-week delay until insurance kicked in to cover his therapy. So, Chuck and I sought the one thing that had always been healing for Johnny: nature. It’s long been known that being outdoors has a beneficial effect on everyone. Being in nature can help give kids with autism and sensory processing disorder the space they need to collect and recenter.
This time, we hunted for secret spots, hidden parks that weren’t so highly trafficked. The small park on the banks of Shoal Creek just south of Seton Hospital is so green it looks jewel toned. We found Commons Ford Ranch (which has since been discovered by everyone), with its open skies and endless trails, on the banks of Lake Austin. And Johnny’s favorite, the backside of Mayfield Preserve, where a palmetto-dotted walking trail leads down to the shores of Lake Austin. Johnny sat peacefully for hours on the shore, nestled against the hollow trunk
of a cypress tree.
Because we were forced to get creative to avoid the crowds that were becoming increasingly overwhelming for Johnny, we were able, in our own, modified way, to recreate a semblance of the exploratory existence we had for him in East Texas. Dealing with Johnny’s condition was teaching us how to make the most of our inconvenient circumstances.
But being in therapy-forward Austin hasn’t been without its challenges. One fall day a year after we moved back, we took Johnny to the newly completed Lady Bird Lake boardwalk just east of Interstate 35. He had a remarkably successful trip there—no outbursts or meltdowns—but a group of women dressed in chic yoga attire phoned the police on us because of Johnny’s messy hair and the high-water pants he had selected to don that day. They told the officers they thought he was neglected.
In moments like these, I pine for the less-crowded environs of East Texas—the home of my childhood and my dreams for our family. But Austin is now our forever home—our reality.
After a solid year of receiving the therapy we had moved to Austin to attain, Johnny, at 4 1/2 years old, just weeks shy of Mother’s Day, would utter his first words since going silent: “Mama-mama-mama.”