He still could be a baby, a toddler—except his head feels like a bowling ball on your chest, his sharp chin digs into your neck and his knobby knees squirm against your thighs. For a moment he relaxes, and so do you. It is just this woozy morning and the warmth that is your son, his ear soldered onto your heart, and you hear him whisper: Tick … tick… tick.
It’s a plank on wheels, shaped like an oversized guitar pick. To your little boy, it’s a modern-day torture machine. His occupational therapist has spent the past five minutes showing him how it works: Slowly, she lowers herself onto her stomach, then uses her arms and legs to swim forward. But each time your son tries to imitate, his body can’t, or won’t, cooperate. Each time he lowers himself, his trunk snaps back as if the board is made of ice, and he plants himself on his bottom. Finally, a half dozen tries later, his body complies, and there he is—face-down, legs and arms splayed like a crab. His pants bunch at the tops of his legs. He pitches forward, scrapes the ocean floor under white fluorescent lights.
You wish your son could glide through life. If only he could hit all the markers. If only you could protect him from the bullies, the looks, the questions: Why does he talk that way? Isn’t he kind of old to be drooling? You want to spare him the angst, the hot shame of being picked last for the kickball team. You want him to be well-liked by his teachers, his peers, himself.
You want him to share his cookies and Matchbox cars, to resist the temptation to yank the cat’s tail. You want him to stand up for himself. At the same time, you see your child as yourself, but better—spared the heartaches you suffered, endowed with the attributes you lacked. You hold in your head two opposing wishes: that he be normal, yet also special. Maybe even extraordinary.
First: Apraxia of speech, which sounds like two cars crashing in your mouth. And he hates shaving cream, plants and sudden noises, among other things—all of which indicate something called sensory processing disorder, another mouthful. A third disorder has been linked to the previous ones: autism spectrum disorder. You refuse to consider that possibility.
A rainbow spills from page three of your son’s Brainy Baby bath book: arcs of blue, purple, red, orange, yellow. He has shown avid interest in this page. He points to a stripe, and you name the color. After you have washed his hair and soaped him up, you turn the tables and ask: Can you find the red stripe? Your son pauses for a second before his pudgy finger lands on red, startling you. You ask him to find yellow; sure enough, his finger finds it. Same with purple and green. Hmmm, you think. Your son is three months shy of two, he rarely points and never talks. You learn that the average 21-month-old brain isn’t yet wired to recognize abstractions such as colors.
You? Everything, which is why you write things on the backs of envelopes, sticky notes, your twitchy left palm. You forget a name as soon as you hear it, as if a tiny suction hose is lodged in your brain. You lose the crux of a joke even as you tell it—not only the punch line, but also the important details leading up to it. Your son? Nothing. He remembers landmarks, directions, the name of the little girl he met six months earlier. His brain catches, and keeps, everything that swims into it.
GEISEL, THEODOR Seuss
He’s better known as Dr. Seuss, and his ABC book rocks your son’s world. He loves the odd, feathered creatures and pleasing rhymes. Most of all, he adores the letters. You pulled it off the bookshelf after he finally grew tired of Green Eggs and Ham, and now you find yourself reading it morning, noon and night. Big A. Little a. What begins with A? You read it when you both are still dazed from sleep, and on both sides of his afternoon nap. You read it after breakfast and before dinner. You imagine him dreaming about Aunt Annie’s alligator, policemen in pails and camels on the ceiling. You believe this obsession will be like all the rest, that it will last for a few weeks before he discards it from the favorites pile. But weeks go by, then months and then seasons. ABC stays on top. You read it until the pages become dog-eared and ripped and, eventually, held together by little more than crisscrossed strips of clear tape. You read ABC until your son can point to the bubbles on the ‘B’ page and the donuts on the ‘D’ page and can mimic the king’s kerchoo when you turn to ‘K.’ You read the book until its sing-song rhythms skip through your head every hour of the day.
Think of his hunger for order Think of how he must clean up his toys. (Which delighted you—at first.) And how he can’t relax until every dresser drawer is shut tight. And whines when the microwave oven is left open. Think of all the rituals contained in your reading of that ABC book: his insistence that you sing through the alphabet rather than saying it. Those rituals, that repetition, helped him learn letters he couldn’t even say. Then one day, he pointed to the ‘A’ and said Ah! When you turned to ‘B’, he said Bahbahbah! For ‘Y’, he said Wahwahwah. This thrilled you; he was talking, after all. And while those letters got under your skin, they really got under his. He craved them like a baby craves his mother’s milk.
The word sits there patiently, gray letters swooping like a serpent’s back. As you exit the elevator on Wednesday afternoons, IMAGINATION greets your son at eye level—fastened to the wall, standing between him and speech therapy. You’re usually running late. He caresses each letter as he names it—I-M-A …!—and you stand there, feeling the seconds tick by but never daring to cut him short. You know what would happen if you did: a heaving tantrum. So you wait it out—I—N—A …!—until he ends with a flourish, sweeping his hands over the letters one final time. IHM-UH-NAY-TUN! he shouts, and the irony strikes you: Imagination has no place in this boy’s reality.
You predicted his greatness when he was still inside of you. All that kicking meant he would be a world-class soccer player, your husband said. Sure, you told him, but he would also recite the Gettysburg address by age two. Your husband upped the ante: chess by three. You rolled your eyes. Okay, he said,—I’ll settle for knowing where a rook goes. You talked about enrolling him in the local circus school so you could watch him perform cartwheels and somersaults. There would be piano lessons before he moved on to brass and woodwinds.
You had to rethink things. Forget chess and piano. You would be happy if your little boy could simply could point to an airplane flying overhead, or let you know what he wanted for dessert. You would give anything if he would just tell you whether he felt happy or sad.
KNOX IN BOX
In November, 2010, a young woman named Xin Yan read all sixty-two pages of Dr. Seuss’ Fox in Socks in just over two minutes. The video quickly went viral. Fox in Socks features Fox, a wiley spouter of nonsensical phrases, and Mr. Knox, the bedraggled sap who couldn’t, or wouldn’t, repeat them. A real tongue-twister, the book includes pig bands and big bands, quick trick chick stacks and tweedle beetles battling—impossible word blasts even for the smoothest of speakers.
Your son will never be able to read Fox in Socks anywhere nearly as fast as Xin Yan did. You can’t imagine him reading it at all. And yet, he has always loved this book. You wonder: Does he hope each time you read it that it will end differently—that Knox will untwist his tongue at last?
Just before waking, you dream that you live in a house without walls. Your house abuts this giant lake, an open watery grave. You see your son scrabbling toward the lake on his stomach. You scoop him up, your heart thumping, back toward safety. He is small and slippery, lighter than a cat. Fog fills the air, and your hands have grown numb. You look down and they are empty. Frantic, you race back toward the lake, the sodden grass squeaking under your feet. Your son is nowhere, so you find an ice floe and lower yourself onto your stomach. You kick away from the shore and begin to paddle using your arms and legs. The lake is deep and still. You see shapes far below the surface. Could one of them be your son? You float on your stomach, farther and farther away from the shore.
Think of it as a notepad in your head—your mind’s ability to hold and manipulate information for short periods. Working memory plays a key role in learning letters and numbers, but studies have linked children with apraxia of speech to deficits in working memory. As a result, children with apraxia often have difficulty learning to read because they cannot hold information in their minds long enough to decode the words before them. This fact puzzles you, for your son doesn’t fit into this mold. From what you can tell, he shatters it.
Now that your son can recite ABC (in his own way) in his sleep, you’ve begun expanding your repertoire. You buy 50-cent alphabet books at yard sales—picture books with animals and Sesame Street characters. You make trips to the library and bring home alphabet books about winter and music and vegetables. You learn that Richard Scarry has written an alphabet book, and Curious George has his own alphabet, too. You collect these books because they excite him, and what could be wrong with that? Around this time, he also notices numbers. You add counting books to your library stashes. Anything is fair game for counting: rabbits, seashells, dinosaurs, frogs, even jazz musicians.
You’re feeding the beast. Your son has begun counting everything he sees, including the lights in your kitchen ceiling (ten) and the tines in his toddler fork (four). And along with numbers come shapes, which also can be sorted and categorized. He sees squares superimposed onto slices of bread and circles around cookies and bowls. He spends entire mornings playing with his shape sorter. He is now three, and beginning to say more things. He asks for bananas sliced in semicircles (emmy-ehkel!) He wants you to cut his peanut butter sandwich into octagons.
But it’s letters he sees the most. He picks up a piece of string cheese and sees an ‘I.’ He holds up a coat hanger; there’s a ‘C.’ When you pull out the Play Doh, he begs you to form it into every letter of the alphabet.
Your son is talking now; you can even understand much of what he says. But he can’t seem to get his me’s and you’s straight. If he wants to be picked up, it’s: Me cay-wee you! If he needs help, it’s: Me help you! When your husband sneezes, your son laughs and says, I sneezed! You do it! means he wants to do it himself. It gets confusing. You’ve overlooked this for a while, figuring he’ll grow out of it. But he’s nearly four years old and he isn’t growing out of it. You know that pronoun reversal is common among children on the autism spectrum, but not unique to the disorder. You know that, unlike other words, pronouns lack the one thing your son craves: constancy.
How can a child experience such difficulty articulating words, yet, at age three, count to one hundred, know a parallelogram by sight, name every woodwind instrument in an orchestra and tick off all the planets in the solar system, in order of their proximity to the sun? What is it in a child’s brain that prevents him from pairing the /t/ and /o/ sounds but allows him to memorize the entire playlist of your Elvis album? What does it mean when your son idolizes dead jazz men like Charles Mingus and Louis Armstrong? Why does your son, who has spent his conscious life struggling to speak, want to hear a Dr. Seuss book about a poor sap who calls his own tongue “lame”?
READING BETWEEN THE LINES
Double-U … WORK! Double-U … WATER! Double-U … WALRUS! Double-U… WOODWIND! Double-U … WILL!
—your 3 ½-year-old son, walking up the stairs with you.
Kay … KATE! Kay … KITE! Kay … KEYBOARD! Kay … KIND! Kay … NOT COOK!
—overheard during your son’s naptime.
—your son, after sprinting up to an Open House sign on your block.
The word comes in reply to your message board post: Hyperlexia. It’s a word you never heard before, but a quick Google search is enough to make the back of your neck grow hot. You dig some more.
You learn: “…there is a group of children who spontaneously read words before age 5 despite disordered linguistic, cognitive, and interpersonal development. An intense and preoccupying interest in graphic symbols replaces other developmentally appropriate activities for these children.”
You learn about “a ‘different’ style of interpreting early-life stimuli (fascination with stable, unchanging, constantly interpretable printed symbols and fear of changing, fluid, constantly calling-for-interpretation social stimuli.)”
You think: This is my son.
He can always count on letters. They are fixed objects, squiggles with meaning, firm and immutable things. Each time he turns the ‘M’ over, it transforms into a ‘W’ (which delights him, prompting him to turn all of his books upside down). He yanks the bottom rung off the ‘E’ that his mother formed out of Play-Doh and—voila!—it becomes an ‘F.’ An ‘N’, on its side, becomes a ‘Z.’ An ‘I’ stands tall and upright. ‘S is always slithery, like a snake. ‘B’ is buxom, burgeoning. A letter doesn’t play tricks. It doesn’t shimmer out of reach, or change forms unexpectedly, like what he tries to, but can’t quite, get out of his mouth. As part of the alphabet, it falls into a predictable order —that is to say it is stable, unchanging. Even when grouped into words, letters, unlike sounds, don’t melt into one another. They are constantly interpretable, forming patterns he can decode and make sense of. Letters are beautiful. Their shapes and sounds hold the warmth of suns.
You blink your eyes, and notice the light has shifted—harsh, water-welling. Turn extraordinary upside down; it looks freakish. He recites your five-digit membership number at the food co-op without prompting. He jokes at the Good Earth restaurant that you’re not on Mars, or Pluto, or Neptune, or Saturn, or Uranus, or Mercury. So where are you, exactly? Where is he? What is he? Disordered? Dis-abled? Super-abled?
He plants his tummy on the board, his face only inches from the floor, and slowly swims forward on the brown carpet. Moving takes effort, but he does it by pulling with his arms and using his legs to stay balanced. He scrabbles like a prehistoric sea creature. This is heavy work, Kate, his therapist tells you, a great way to strengthen his trunk, from which all things radiate. A strong trunk means stronger arms and legs, stronger fingers and, eventually, stronger muscles around the mouth. (Maybe it also means he finally stops drooling.) But right now, one thing propels him forward: letters. Kate plucks them one by one from a puzzle and tosses them down the hallway like bread crumbs. Your son lurches toward them. He reaches the wooden ‘K’ and picks it up, squealing with delight. He picks up a ‘V,’ an ‘M,’ a ‘Q’. He could go for hours, you suspect, as long as he has letters to chase.
The coffeehouse abuts a frozen lake, the same lake where you and your husband were married nine years earlier. You and your son, wired from cocoa, walk outside, and you point to the carving of a giant black bear just outside the entrance. Look at that, a bear! you say. His eyes go dark. He whimpers and backs away. And then he begins to run, half-crazed, toward the lake. Go in yake! he screams, Go in yake! And you sprint after him, scooping him up just as he reaches the retaining wall. You haul him back up to the path, your heart thudding, but once his feet touch the ground he turns back and runs faster than you’ve ever seen him run, and you believe he would jump into that bone-chilling water if he could, because up is down and down is up and neither of you knows what is safe any more. The wind whips his hair and yours, too, and this little boy has become a stranger, a being from some other planet. You would not think twice about jumping in after him, but just in time, right before he sails off the wall and into that roiling lake, you grab him and carry him, kicking and screaming, all the way back to the safety of your car.
a : guest : foreigner <xenophobia> b : that which is not the host <xenograft>
a : strange : foreign <xenolith> b : not being the host <xenobiotic>
Variants of XEN-
xen- or xeno-
Origin of XEN-
Late Latin, from Greek, from xenos stranger, guest, host
His new, favorite book is My Big Book of Learning. He points to each word of the title and bellows: MY! BIG! BOOK! OF! YEARNING!
At bedtime you ask him: Why did you run to the lake? What made you do that? You stare into his brown eyes, groping. Finally, he says It scares you. And he’s right.
Pamela Schmid is the creative nonfiction editor for Sleet magazine and a current participant in the Loft Mentor Series. Before receiving her MFA degree from Hamline University, she wrote and edited for the Star Tribune and The Associated Press. Her work has appeared in Sweet, Sleet, and Rock Paper Scissors. She lives in St. Paul, Minnesota, with her husband and son.