By Lorren Lemmons
@lorrenlemmons

My two-year-old is singing along to Taylor Swift as I drive to work. “Out of the woods, out of the woods, out of the woods,” he chants, repeating the words over and over again. He has an incredible memory, often reciting entire picture books or singing multiple verses of the songs he hears. I revel in his happiness, knowing he’ll grow inconsolable once we reach the front doors of the daycare at the hospital where I work.

His daycare teacher has asked me to meet with her during my lunch break today. He will be napping, so I won’t be able to give him a cuddle (probably for the best, since he cries so hard when I drop him off), but I’m curious to know her perspective about how things are going.

She starts the conversation with concern, trying to make eye contact as I rubberneck around her to catch a glimpse of my son’s mat through the partially closed door to his classroom. I tell her I’m surprised he still cries so much when I drop him off. She makes a pained face. “He doesn’t seem to be adjusting well,” she says and lists off her concerns: He covers his ears when they do music. He doesn’t talk to anyone. When he does talk, he doesn’t say anything original. Instead he repeats phrases other people say or sings.

“I think he might be delayed,” she says, and my vision goes white.

***

I start frequenting autism message boards. I weigh my son’s every action. He stacks the grapefruits from the fruit bowl and says “Snowman.” Creative, imaginative play. He screams at the fluorescent lights in the grocery store. Autism. He interacts with a kid at the neighborhood playground instead of pulling me away to catch snails. Healthy social behavior. He sings in his room for an hour, imitating the vocal riffs from a Coldplay song, the chorus of Taylor Swift’s latest hit, the chime of my phone. Well, I used to think it was cute, but due to my constant googling, I’ve learned a new word for it––echolalia, a hallmark symptom of autism.

***

When I was pregnant with my son, I approached parenthood with confidence. I was a pediatric nurse who cared for children with cancer, so surely I could handle my own baby. But despite spending the months of pregnancy writing him letters and singing to him as I drifted off to sleep, his birth thrust me into a crucible.

During my 36-hour labor, my son’s heart experienced a variable deceleration. The medical team surged into the room, pushing a burning dose of epinephrine into my veins. The medication sent my heart into a painful gallop. In the ensuing hours, I developed a blood infection that passed to my son. When he was finally earthside, I had a panic attack on the operating table and was swiftly sedated, waking an hour later to a sweet little stranger being laid on my chest.

The following days were a blur as I attempted to breastfeed him and watched his body visibly shrink. After an emotional meeting with a lactation consultant, I reconciled myself to supplementing with formula. I spent hours combing through online message boards, searching for an answer to my low milk supply and crying as I mixed my son’s bottles. I sang to him as he wailed and did my own crying once his eyes finally blinked their way into a brief sleep.

The final blow came when he was admitted to the hospital at five weeks old for RSV. During the week prior, I’d been afraid to sleep, watching his chest heave with the struggle to take in enough oxygen. Finally, during our second emergency room visit, a nurse clipped a pulse oximeter onto his foot. “Just to double check that you’re good to go home,” she said.

My baby’s blood oxygen was 86 percent, and we were finally given a room. For the first time in days, I could sleep, knowing a monitor was tracking my baby’s breaths so I didn’t have to. The day we were scheduled for discharge, his oxygen bottomed out at 75 percent for half a heart-stopping minute. The attending physician turned to me. “You’re not going home tonight,” she said. “Your baby is getting better, but he’s not out of the woods yet.”

***

After my son’s teacher tells me her concerns, I sign him up for early childhood testing at the local public school. Their results are inconclusive—no diagnosis—but he does qualify for speech and occupational therapy.

Sometimes I can put that daycare teacher’s words out of my head. He gets good grades and has a few friends. However, he’s also easily distressed and overstimulated. Sometimes he falls on the floor screaming at the grocery store, and I can’t figure out why. He won’t put on clothes unless we cut out the tags. He throws up at any trigger—a new food texture, too much sun, stop-and-go traffic. The echolalia has mostly disappeared, but he speaks in a stilted, formal way—almost as if he’s following a script. I set up appointments with psychologists and developmental pediatricians, but the waiting lists are months-to-years long, and as a military family, we’re never in one place long enough to actually see the doctor.

I spend those years vacillating between certainty that my son struggles more than average kids do and questioning my own sanity. Some days, I am astounded at the crystalline brilliance of his mind: the way he notices the tiniest details and reproduces them in his drawings; the way his logic engulfs a problem and spits it back out, reshaped and clarified; the way his enthusiasm surges up in his muscles and he runs around the room with windmill arms. Other times, I want to throw the dishes against the wall: when he starts screaming because his brother brushed up against his side; when he screams profanity on Christmas morning because he’s overstimulated; when he can’t perform simple tasks, his body toneless and limp, unable to properly grasp a pencil or throw a ball.

Sometimes, when I’m in a particularly self-flagellating mood, I examine all the ways I’ve failed my son. There are the moments when he didn’t have sufficient oxygenation: the variable heart deceleration in labor, the low blood oxygen when he had RSV. Both could have harmed his brain development. There’s the low amount of breastmilk he received—less than a quarter of what he needed for the first few months of his life—before I gave up at six months. I’ve seen the articles that claim breast milk increases intelligence and decreases the risk of everything from ear infections to cancer. The hours I spent crying on the floor next to him before I got help for postpartum depression surely did him no developmental favors. And of course, I worked outside the home, and we lived in four states before his seventh birthday—a definite failure in consistency.

I feel like I’m wandering aimlessly through the woods, the shadows growing ever more ominous. I’m desperate to find a pathway to clear skies, but I’m trapped behind brambles, unsure of where to go.

***

My son is failing third grade. At parent-teacher conferences, his teacher tells me that while she is required to put 59 percent in the grade book, he is actually completing only 5 to 10 percent of his work. “I think he should see a psychologist,” she tells me, and I laugh a bit to myself, because I’ve been desperate to get him in for years. However, this time, we finally make it off the waiting list and into the office.

After three appointments—hours of testing and questionnaires—I receive an email. The attachment is over thirty pages long, but I flip to the end, desperate to see the diagnosis, and I find it spelled out at last—the label I’ve wondered about for so many years.

I’ve pinned too much hope on the psychologist’s words. For years, I felt as though a diagnosis would answer all my questions and give me a map to navigate out of the difficulties my child is experiencing. However, I quickly realize that knowing the name of the forest doesn’t make it any easier to escape. I have more resources, but I’m still facing the same thick brambles—the power struggles, the sensory needs, and most of all, the fear.

***

I’ve lost my temper on the way to school again. My son is constantly falling behind—traipsing out to the van without shoes, leaving his binder on the table, or forgetting to eat breakfast while his siblings wait patiently in the car. I know time management is especially challenging for him, but sometimes I just can’t believe that despite all my redirection and time management strategies, we’re still running late.

“I’m sorry, Mom, okay?” he shouts, frenetically tugging at his hair—a stim, I’ve learned, now that I have names for some of the things my son does.

“Okay,” I say, taking my own deep breaths. “I’m sorry for losing my temper. Let’s keep working on being ready on time.” I feel terrible that I’m sending him off to school on a negative note, but my frustration still simmers. I can tell he’s bothered as he hops out of the van without waving goodbye. I begin to ponder ways to reconnect with him when he gets home, so I can repair the rift I caused this morning––maybe with a game of Mario Kart or a little extra time talking before bed.

I still feel lost in the woods most of the time. Maybe all parents feel like they’re in unfamiliar territory, blindly trying to lead their kids through the woods while shouldering their own unseen issues. I’ve stopped seeking out one right path to clear skies and concrete answers. Instead, I stop and look around, taking in both the beauty and the darkness as often as I can. Sometimes, that looks like standing my ground when correcting negative behaviors; other times, it requires flexibility from me as I leave the path I thought we were supposed to take and let him lead the way. Always, grace is required for both of us as we explore side by side.

Guest essay written by Lorren Lemmons. Lorren is a freelance writer and mother of three. After moving around the United States as a military spouse, her family has settled down in her hometown in Idaho. When she isn't wrangling words and kids, Lorren enjoys playing music on the piano and the harp, reading under a blanket, and hiking in the Idaho foothills.

Photo by Jennifer Floyd.