Photo by Christina Schmidt

Beautiful Stones

Jennifer Chianese

        Leo is four years old and I still dress him head to toe. I nudge him towards independence, encouraging him with the reward of having done it all by himself. Big blue eyes beaming through thick, tangled eyelashes, he focuses on me as he pauses for a moment in thought. Then, a bright smile as he says, “But Mom, you are just so good at it.”
        Attempting to switch from my parent to pediatrician lens, I half-heartedly search for a measure of emotional intelligence. Puffed up with maternal pride, I think “He is beyond any scale we use to monitor these abilities.”
        He dazzles me as he lectures on the distinguishing features of a lemon shark. He discusses snout shape, fin size, predatory behavior and, true to his interest in social connection, includes information on their relationship with family and friends. Perhaps it is his charm or these moments as a budding marine biologist that trick me.
        Somewhere in our play—dragons in mid-flight, wings, horns, and ears positioned for aerodynamic optimization—I interrupt and suggest that we count them, a military-style line-up. My good-natured son goes along with my plan, although he seems more excited by the idea of abundance and possession. “I have so many!” Positioning the dragons for the lineup is an engaging activity in and of itself. Some balance easily on their hind legs. Others need to tripod on a wingtip. Others don’t stand very well at all, because, well, some dragons are just meant to fly.
        Leo begins the count but pauses after the number six and catches my eye, not sure of what to say next. I initiate with a slowed-down version of “se-ven.” He watches the movement of my mouth, echoes me with a tentative murmur of “ven.” For a few weeks, interrupting the flights of fantasy to count the dragons becomes a routine, admittedly an interruption imposed by me. However, despite the repetition, I still find myself chiming in at the number seven and most of the numbers that follow.
        Children count to me daily. A glowing parent announces a three- or even two-year-old can count to ten and the child does the obligatory performance. I smile and nod but mostly I notice birthmarks and head shape as I process what the parent said two sentences before. “Seeee-Ven, Eight….” As the lilt in my patient’s sing-songy sequence rolls over a peak, memories of the thousands of children I have met before her course below the surface of my thoughts. A river of reference points. I gauge her speech clarity. I think back to her gymnastics around the office when the visit began. I check off developmental milestones. As she nears her grand finale, habit more than reason directs me near her, to rest a hand on her shoulder and another on her chest. In that way, I employ skills, for just a few moments, that I learned as a pediatric resident. It was then, in the night, that I tiptoed into the rooms of the babies and children in my care and learned to identify the first signs of respiratory distress. In the dark, without my stethoscope or my eyes, I listened for the wheezes or the grunts. My ear hovering over their mouths, I measured the rate of their breathing against the metronome in my mind. Gently, I rested my hand on their chests and felt for the labor in their breathing. The heave and collapse—that point when a bell would ring, for only my ears to hear—a warning to me, while my patient and the parents slept, that there was a problem for me to address. It was time to turn on the lights, reach for the oxygen at the bedside and sometimes more.
        “Nine, TEN!”
        I cup her plump cheeks in my hands and say with a smile, “So good,” her carefree bounciness delighting me and, at the same time, making its way into my general assessment of her health. Then, I gently move my hands to her shoulder and her chest, bells poised at the ready and metronomes ticking away.
        Deep in me I know my son should be able to count. But because he is my son and not my patient, the bells and metronomes turn off when I am around him. The constant clang and relentless ticking are drowned out by my son’s squealing laughter and the ocean waves crashing behind us. We are in a face-off, sun-soaked and sea-sprayed. He is determined to get past me, seeking the thrill of getting knocked over by a wave. And so begins our dance. I allow him his seemingly perilous moments with a wave, but hover over him, swoop him up at just the right moment, and get the pleasure of hearing the giggles and saving him over and over again, reassuring us both that I can do that.
        Home from the beach, when he counts his dragons, I shrug off his difficulties. Instead, I focus on his creativity, his ability to generate, in one sitting, so many unique Lego dragons. Like a beautiful stone that catches my eye in the sunlight as I walk along the shore, these unique features of his are saved in my pocket, waiting to be found again, and seen in a new light. I collect others. At preschool, crayon marks are other children’s first attempts at learning the letters of their names. Leo presents a stack of papers, each folded into the letter L. I ignore what may be seen as a failure to write the letters of his name and marvel at his ability to work in three dimensions.
        As he nears five years old, Leo’s difficulties and differences, those quirks I have previously dismissed, surface from the deep. At the day’s end, I cherish those first moments after I arrive at his school, before he sees me. Previously these had been moments of joy as I observed him imagining and creating with his friends. But these days, from across the room, as if in the quiet of the night, my ear to his mouth, I sense the catch in his breathing. He sits alone while the children participate in games that rely on mastery of letters and numbers. When he does participate, he is frustrated, snapping at children who answer for him when it is his turn.
        I recall his three-dimensional L’s and purchase large cardboard letters and numbers. We paint them and play games with them. We do acrobatics to form our bodies into them. But still, after a few more months, he refers to the number seven as “L’s brother” and represents numbers higher than five with his fingers. At the age of five, he knows only the three letters of his name with confidence. Children his age should know at least half, if not all, of the letters of the alphabet. There are days that he seems to learn more, but what he learns one day is forgotten by the next.
        Leo’s teachers are aware of his difficulties, too. They suggest I discuss my concerns with another teacher who has a master’s degree in literacy. She speaks to me in a mollifying tone. Surely she sees my eyes creased in worry, hears the intensity in my voice. “For some kids, it just takes longer to click.” She suggests, “Perhaps it doesn’t interest him yet.” There is a calmness and a slowness to her words. So slow that I have time to notice how neatly her scarf is tied and how well it matches her sweater, and I wonder if that is what my life will be like when children are not wrapped around my legs and hanging from my arms as I attempt to dress myself in the morning. Like this morning, when Leo asked me for the umpteenth time to help him recognize the numbers above five so that he could succeed at his sister’s math bingo game. I remind him of “L’s brother” as I trace 7 in the air and the “snowman number” as I trace 8, all occurring as I brush my teeth.
        As my experience of Leo veers from educators’ advice, I consult a pediatric neuropsychologist. I speak with her on the phone and request an evaluation, expecting an appointment for testing, a diagnosis, and a recommendation for treatment. She says, “It’s too early to diagnose a learning disability. It won’t be worth testing him for another year.” She adds, “And, by then, the problem may disappear. It may just be a developmental lag. Give it time. Keep working on letters and numbers the way you are. Call me in a year if he is still having difficulty.”
        I ask this of parents all the time, to watch, to wait, and to hold. Keep a watchful eye over the child in your care, watch their condition as it develops. Be patient and either wait for it to improve on its own or for it to worsen, at which time you should seek more help. Holding. Hold the difficulty of it all. Difficult symptoms. Difficult emotions. Cope with it. Live with it. Without being able to fix it. In medicine, this is our advice when we have no treatment or when a problem will resolve on its own. No one likes this type of advice—not the patients, the parents or the doctors.
        For a moment, I heed this advice. I visit the aquarium with Leo. He leaps and bolts to the first tank. “The electric eel, Mom!”
        I check the placard. “You’re right, Leo!” As he stares in a trance at the eel’s every move, I marvel at his ability to distinguish this gray cylindrical fish before us as the electric variety of the species. Knowing that he has not been to this aquarium recently, I note his ability to recognize detail and his memory are indeed intact in some capacity. And just in case this might have been a fluke, he proves himself again and again. Giant Pacific Octopus! King Penguin! At the squid’s tank, he explains how the squid moves using jet propulsion.
        Perhaps, it is inescapable that I am a “bad patient” and likely to challenge the psychologist’s advice. Learning disabilities are not in our purview as pediatricians, but I know what they are: problems acquiring basic skills in otherwise intelligent people. And even though pediatricians do not manage learning disabilities, we do manage other brain-based problems like developmental delays of early childhood—delays of talking, walking and social skills. With these, we recommend early initiation of therapy, sometimes prior to understanding the cause of the delay. We start early to take advantage of brain plasticity, those periods when the brain is most receptive to change.
        I delve into the literature about learning disabilities. The list of early signs of dyslexia reads like a summary of Leo’s learning challenges for the past year—difficulty recognizing letters and numbers, difficulty with sequences, poor working memory, poor rote memory. Other things on the list—difficulty with rhyme, days of the week, distinguishing right from left—I still considered to be Leo’s quirks. The list of strengths of those with dyslexia also resonates with my experience of my son: visuospatial skills (working in three dimensions), understanding of concepts, empathy, and exceptional vocabulary for age.
        Dyslexia is genetic and other family members are likely to be affected. It occurs along a spectrum of severity with varying degrees of reading, spelling and writing difficulties. I cull the depths of my memory and interrogate family for hints of learning problems in myself, my husband, our parents, our families. Our families deny it all, but my husband’s quiet frustrations through the years and scattered images from my own childhood suggest a different answer to the question of what is causing Leo’s problems.
        My husband has always talked about poor spelling as a family trait and, to this day, complains that he’s a slow reader. I have never taken him seriously. He is a successful mathematician, whose work is published in prestigious journals. But interestingly, I learn that mathematics is among the common careers for gifted dyslexics. In fields like math, engineering, and architecture, strong visuospatial skills are more important for success than language skills. In my husband’s faculty picture, he stands in front of a white board covered in shapes and symbols, which are next to a bookcase of books filled with the same. Slow reading would not be a hindrance in such a profession.
        At a faculty dinner held by my husband’s university, I share with a computer science professor my concerns that Leo has dyslexia. I explain his paradoxical ability to add and subtract numbers without being able to recognize their symbols or remember the names for them. “He prefers to have dice around because it is easier to convey his thoughts that way than with the number symbols.”
        With a warm and knowing smile, she says, “Of course he has dyslexia. I did the same thing as a child. I have dyslexia. My husband and my daughter do, also. Many of us do.” She holds out her hand as if to imply the room full of math and computer science professors. Her husband joins in the conversation. He regales the table with the story of how he shocked his middle school teachers when he, “the stupidest kid in the class,” scored the highest on a standardized test in math.
        I want to believe that Leo’s early difficulties are a harbinger of the kind of talent his father and these scientists have. But my husband is concerned about Leo, too. He has no memory of struggling the way Leo does. And I cannot ignore how Leo reminds me of my father.
        The way a scent in the shifting wind can trigger a distant memory, changing your sense of time and place, Leo’s charm and his smile take me back to my father. The strange alchemy of genetics. What magic has it wrought?
        My father was confident and successful in his adult life, but a known and celebrated school failure. A college dropout in the first semester. The worst of students in the earlier grades. That is what the nuns from his Catholic school days told us at his funeral. I was twelve when he died. With the same warmth and joy I felt as I giggled and hopped through the waves at the shore, my hand in my father’s, basking in the glow of his affection, I remember his over-the-top fascination with my reading ability. The memories rush forward. The absence of books at his bedside table, the lack of text, in general, in our home. His father’s devaluing statements about his school failure, my father’s compensating bravado. That is all I know.
        The memories ebb and flow, a suggestion but certainly not a conclusive answer. A wellspring of questions, his history cast in a new light, go out to sea unanswered, never to return.
        Unlike my father, I was and still am a reader. My bedside table overflows with books, as do my bookcases. My strength in reading has always been a comfort for me and is probably a source of my anxiety now for my son. I cannot imagine life without books. I look to them for answers, and for my son’s difficulties, books and journal articles are where I find answers.
        A multitude of functional MRI studies in the past two decades demonstrate the neurobiological basis of dyslexia. What lies dormant in the brain of a child with dyslexia suddenly awakens with the right interventions. Based on such studies, dyslexia experts advocate for early diagnosis and intervention before first grade. Like the oxygen mask at the bedside of the child in respiratory distress, I grab this information and use it for my son.
        Leo begins work with a tutor trained in the Orton-Gillingham method: a multisensory, repetitive, and structured approach. He draws letters in salt as he says the letter name and, eventually, the letter sound. He participates in class activities with more confidence. This is not life or death, but I feel the satisfaction and relief of watching dusky lips turn pink.
        These small successes are a comfort, but first grade is just around the corner. We need a diagnosis. I consult one child psychologist and then others. I am cast out to sea in the middle of a storm. The waves crash up against my little boat, throwing me to and fro but getting me nowhere. A raised eyebrow and “concern” at my willingness to label my son so soon. One psychologist urges patience, “Give him a chance to outgrow this.” Another admits it is certain Leo has a learning disability but testing cannot confirm it for a couple years. I am told that the schools do not diagnose dyslexia because it is a medical diagnosis. I find this alarming, knowing that physicians do not diagnose dyslexia and insurers do not recognize it as a medical diagnosis.
        Finally, I find a psychologist whose advice is consistent with what I have read. She advises early identification and treatment. Leo is diagnosed with dyslexia. With papers in hand, I meet with the school. They tell me he will not qualify for services until he falls two years below grade level. At this point, he tests at grade level only because of the tutoring he has received.
        I am stunned by how much work it has taken me to get my son to this point, knowing what I know as a pediatrician. I cannot imagine how parents who don’t know as much as I do can get help for their children.
        My senses now tuned, I find that the problem is all around me. Indeed, seventeen percent of the population has dyslexia. I see and hear things from my patients I have not been sensitive to previously. Perhaps I ask questions I had never asked before. Like the single father, for example, eyes hooded by a baseball cap, arms folded in frustration, who tells me his son has “behavior problems” at home and at school. The kindergarten teachers think he has “attention problems” and they want medicine for it. One of the questions I ask is whether his son knows letters and their sounds. The father makes eye contact with me for the first time and says, “None of them.” I ask if he himself had trouble learning to read as a child and he looks at me as if I have uncovered his deep secret. The red-cheeked moments of shame, the taunts that led to hidden tears. They linger under the hood of his cap, woven into the tough veneer of his biker jacket. He tells me the story of his own learning difficulties. His baseball cap comes off and he nods as he listens to what I have to say. He takes the letter requesting diagnostic testing for his son. A couple months later, his son has been diagnosed with dyslexia. He tells me with pride, “The psychologist said ‘your son is really a very smart kid.’”
        NPR does a series on dyslexia. One segment is entitled, “Dyslexia: the learning disability that must not be named.” Months of trying to get a diagnosis and treatment for my son are put into perspective—a learning disability that costs too much for schools. I discover Decoding Dyslexia, a grassroots parent movement advocating for laws to test and intervene at younger ages for children with dyslexia.
                                                                ***
        In my profession, naming the problem, or labeling it with a diagnosis, offers a certain amount of security, even before a resolution is attained. It is a validation of the difficulty a person has suffered. It offers a sense of community. Diagnosis leads the way to treatment and a prediction of the likely outcomes, or the prognosis.
        I clung to the search for the correct diagnosis in Leo. Perhaps that is how I best know to move forward when I encounter a problem. While my understanding of his diagnosis was helpful in obtaining the best interventions, it was not what ultimately gave me the security that Leo would be OK.
        Like all parenting, it has been a balance of supporting and letting go, a process made harder when you feel that your child has a weakness for which he requires extra support. I am learning to trust in his strengths and his resilience. He teaches me regularly to be careful not to rely too much on my own preconceived ideas about how events will proceed.
        While on a trip to the Jersey Shore this past summer, Leo had some swimming ability, enough that I could stand off to the side and watch as he played in the waves. The smile never left his face. Out of the corner of my eye, I saw a large wave surging. In my mind’s eye flashed images of my child-self tumbling, and the accompanying fear, loss of control, sand and shells scraping my back, water up my nose. I dashed forward towards Leo, but I was too late. He had already been pulled under by the wave. He popped up with a look of shock. His eyelashes were weighed down by sand, the hair on his head flattened by clumps of wet sand. He spat water as he rubbed his eyes and shook it all off. But then his eyes widened and a smile broke through.
        “Leo, are you ok?”
        His usual upbeat self, “Yeah, Mom, I’m fine.”
        He peered around me, eager for the next wave.
        That evening, we went around the dinner table with the question, “What has been one of your favorite parts of the trip so far?”
        Leo said, “It was when I went under that wave. I kept my eyes open the whole time. I could see the sand at the bottom.” He paused here and then said solemnly, “And I saw a sea creature.”
        I grew up at the Jersey Shore, and I can’t imagine anything more exotic than a hermit crab in the shallow water where he swam that day.
        His eyes were wide and blue—aglow with wonder. I am filled with hope about what those eyes can see.