Sequence

by Sarah Belliston

Ever since my son Jack could walk, he’d head to my bookcases and pull the books from the shelves into a pile. Sitting there like a hen hatching chicks, he’d pick a thick volume and set it on his outstretched legs. He’d turn it sideways so the weight of the book rested on his feet and the cover opened into his lap. Then his dexterous middle fingers would run along each side of the book, catching just one page, and flip it down. One by one. Over and over. When the book was finished, he’d turn it around and repeat the process. My family joked that he was reading; I joked that he loved books as much as I did.

At eighteen months old, a team of doctors diagnosed Jack with autism spectrum disorder.

A hybrid is something born from two different species, or a composite built from two different things. Hybrid cars are supposed to be good for the environment. We would not have the purposeful inventions of the liger, the tangelo, or the blood lime without hybridity. (Lions and tigers do not live in the same areas so the crossbreed of the liger has only been documented in captivity.) Because of their genetics, these hybrid animals are often, though not always, infertile.

At conception, the DNA of each parent is put into a blender and cut into pieces, so the child gets a unique mix of the parents’ chromosomes. When those chromosomes merge to make sequenced pairs, they can only match with the same structure. Different species have different structures, but related species like zebra and horse or citrus fruits have enough in common to make a hybrid. In plants especially, the seeds sometimes carry the genes for multiple colors or varieties. Depending on how the plant is pollenated, a recessive color could become more common despite being he recessive trait. When the seed grows up to have the same desired trait as the parent plant, gardeners call this being “true to the parent.” Many genetic probabilities work the same in plants as in humans. These probabilities can sometimes be determined by a Punnett square.

For example, my husband, Scott, has a genetic blood disorder called hemochromatosis. Two of his five siblings also have the condition, which is relatively mild as long as you know you have it. Those with the disorder absorb too much iron, which can cause liver failure if left unmanaged for too long. Another relative had hemochromatosis and developed cirrhosis of the liver late in life, never once having drunk alcohol. My husband has to get his iron levels tested every few months. When his iron becomes too elevated, he donates a pint of blood, which makes the body produce new blood, which in turn uses up the high iron levels and returns his system to normalcy.

Before we married I took a blood test and found out I carry the recessive gene for hemochromatosis. One study estimates that ten percent of Caucasian people are a carrier, and one in 200-500 develop the disorder. Our Punnett square looks something like this:

	Sarah h	Sarah H
Scott h	hh	hH
Scott h	hh	hH

Each of our future children would have a fifty percent chance of having hemochromatosis and a one hundred percent chance of being a carrier.

My mother asked me if I was okay with these odds. I said yes. I married my husband. His genes mixed with mine and the sequence of our combined DNA made a hybrid, what we thought was a good hybrid with smiles and laughs and ten fingers and toes.

I considered the known problems, but I didn’t think of the unknown. When autism appeared, I wondered what our Punnett square would have looked like. And what my decision would have been.

Some autistics have symptoms from birth, while others go through a type of regression, usually before the age of five. This regression involves a breakdown of neural pathways in the brain that can affect communication and sensory perception. Some regressions happen overnight; parents wake to find an autistic child in their neurotypical child’s bed. This kind of regression produces the common metaphor of autism as a kidnapper that has stolen the child.

Other autistics, like my son, regress slowly, so slowly I couldn’t tell you exactly when it started. All I remember is that after his first birthday I noticed more and more signs. By his fifteenth-month well-child visit I had to admit he hadn’t met any of his communication milestones. At the hearing screen a month later, I watched him lick the hinges on the door as the specialist said, “Have you considered autism?”

Science doesn’t know why people develop autism. A Punnett square is impossible. There may be a genetic component, but if so, scientists have identified over 200 possible genes that could mutate in multiple ways and result in a spectrum disorder. My most recent talk with a geneticist said they can identify a genetic cause in less than ten percent of cases. The identification success rate gets even lower when the autistic does not have intellectual delays. I think of Jack and how he did first grade math at four years old. Testing him wouldn’t give me any more answers. My husband’s sister was diagnosed with Asperger’s after we were married. Her son, who is a few years older than Jack, is also autistic. It was in the sequence all along.

There is no cure for autism. Instead there is what I like to think of as “symptom management,” which usually consists of behavior modification therapy. This therapy focuses on substituting wanted behaviors for the isolating repetitive actions autism is known for, like replaying the same five second portion of a video 200 times or flipping pages in a book for hours.

Jack started behavior modification soon after diagnosis. When he was almost three, we decided to stop. Behavior modification works amazingly for many, but it didn’t work for Jack. The therapy had made his behaviors worse and caused a larger regression. Before using behavior modification, he mainly ignored my attempts to interact with him. After the intervention he would lie down and will himself to sleep in order to escape unwanted stimulus, i.e., me.

Six months later after we stopped behavior modification, Jack was more interactive with me but we weren’t making any progress on his communication. I travelled across the country for a weeklong training on a different kind of therapy based on relationships and social communication instead of deterring behavior.

The program is called Son-Rise and has a reputation in the autism community for the claim it can cure autism. I was more interested in the therapy because it focused on attempting to understand the purposes behind the autistic’s actions. The program also has the central idea that the reward for social interaction should be the joy of the other person, not a treat or motivator (as in behavior modification). So, instead of a cue to look someone in the eye, the parent/facilitator acts in a way that makes them interesting to the autistic and then rewards any glance with an overexcited response. In essence, they teach the autistic how interaction with another human being can be fun.

By the end of the week, there were many things about the program I knew would not work for my family or my child. To complete the program with fidelity, you need a dedicated playroom where the autistic stays for eight hours a day while different volunteers rotate through, ensuring that every moment is maximized for therapy and the environment is controlled to decrease the likelihood of surprises for the autistic. I could do the gluten-free and casein-free diet they suggested because Jack only ate a few items anyway. But when they told me to take away screens, I balked. Since then, I have come to see the wisdom in their words. Some autistics, and some neurotypical children, have delicate nervous systems that cannot handle the input from a personal, interactive screen. They become isolated, irritable, and have frequent meltdowns. However, Jack is not one of those kids, at least not yet.

So when I came home, I adapted the new therapy to our family and my son. We used our whole house as his playroom and tried to be observant and ready to interact with him all the time, instead of just for set hours. I saw an immediate increase in Jack’s eye contact and verbal communication. When I slowed down and focused on his reactions, he gave me more of them. When I flipped pages next to him, he stopped flipping and came over to take my book, which would turn into a game of passing books from one pile to another. Our “game” was a baby step to interaction, but leaps ahead of where we were before. Our future suddenly looked brighter, and the trip we’d planned to visit my brother across the country looked brighter too.

At the Son-Rise training, one female facilitator told a story of helping a child to say their first word. When she tried to celebrate with the parent afterward, the parent denied hearing their child speak. The session had been videotaped, and the trainer said she had to play back the tape three or four times before the parent could hear what their child had said. When I heard this story, I wondered how it was possible for a parent to ignore auditory evidence, but on that trip to visit my brother, I found out exactly how it could happen.

Sometimes Jack connects with people right away. When we got to my brother’s apartment, Jack connected with his then twelve-year-old cousin, Tyson. A good big brother to three younger siblings, Tyson happily sat with Jack in front of the television. They watched the credits of a show scroll by, and Jack supplied a steady stream of what I thought was gibberish. Tyson said, “I think he’s reading the names. I can almost understand what he’s saying.” I brushed off the idea immediately. I had heard this gibberish plenty of times when Jack stood in front of our television at home or flipped pages in his books.

Later that night I sat on the floor next to Jack as his three-year-old hands and eyes concentrated on an iPad. He had gotten into an ebook app and was flipping the digital pages as fast as he could. A steady stream of gibberish accompanied the motion. I thought about what Tyson had said. I scooted closer. Jack’s gaze was fixed to one spot on the screen, the top left corner of each page. Staring with him, I listened again and it was as if a translator had been slipped into my ear. All of his gibberish suddenly made sense. I heard “the,” “and,” “this,” and “can.”

Jack was speaking.

Jack was reading.

His sequence was wrong. He read the first word of each page instead of left to right and top to bottom. He read heavy volumes instead of picture books. But there was no denying it anymore. I wondered how long he’d been reading, how long I had been unable to hear.

I felt for those other parents, the ones who didn’t understand their child’s first word. Maybe their child was like Jack who, I realized, often dropped consonant sounds, so “pig” was a short i sound and “horse” was “ohss.” Maybe the parents were like me and couldn’t believe their child spoke because the action was tied to something unimaginable, like a child who could read before he could speak, or like understanding that autism doesn’t break someone’s brain, it only makes them process information in a different sequence.

In critical disability studies, there is an “affirmation model” of disability. The idea is that society and culture have trained people to view and portray disease and disorder as negative and pejorative. This model analyzes literature that highlights the good events or actions that wouldn’t otherwise happen if disability didn’t exist. Words in the Dust is a novel that tells the fictional story of an Afghan girl with a cleft palate. The deformity allows her to pursue an education, whereas fixing her cleft palate would result in marriage and little opportunity for learning. In John Elder Robison’s memoir, he writes how his undiagnosed Asperger’s allowed him to understand machinery in a way that led him to create pyrotechnics for KISS after he dropped out of high school. Naoki Higashida, a nonverbal autistic, writes in his book that taking away his autism would fundamentally change who he is as a person.

After reading these stories, I wonder if autism will turn out to be a positive or a negative for Jack. I’m not sure what about Jack is his autism and what isn’t. I don’t know if his ability to match his voice to any melody or sound would still exist without autism, or if his laugh would still bubble up from his center and spill over into everyone within hearing distance. Would his unusually blue eyes still twinkle? Would his gaze still make people stop and pay attention if it was more frequent?

In truth, I don’t know if my husband’s gene pool caused my son’s condition, gifting him the particular sequence that resulted in his autism. There are more members of Scott’s family with autistic qualities, but it could be something in my genes that is hidden in me but manifested in Jack’s hybrid sequence. A theory called the female protection effect thinks that genetic mutations must be more severe to cause autism in women, which means that I could have passed on faulty autism genes to my son without having any symptoms myself. Another study found that copy number variations (where sections of DNA are repeated and the number of repeats varies between people in the population) are more commonly passed on from the mother’s egg than the father’s sperm. At least for one specific area called the 16p11.2 region, found in about one percent of people with autism. However, the study points out that simply having a mutation in this area does not mean the individual will always develop autism.

At this point in the research, it feels to me like it’s just as likely that everyone has a gene that could result in autism. Autism affects almost every family I know. Some more than others. One in fifty-nine children are diagnosed on the spectrum in the United States. The statistic just changed in 2018. The rise is attributed to the growing number of mild forms of autism getting an official diagnosis. An article I recently read talked about the detrimental part of having a genetic profile. Two individuals with the same sequential defect can have very different outcomes. Genetics do not determine prognosis, and yet if parents know of a serious mutation, they may think their child is not capable of progress.

After diagnosis, the thing I most wanted was for someone to tell me that my son was capable of learning, that spending hours and years trying to teach him would result in success. I didn’t want to put him or myself through the hardship of therapy without a guarantee. If he lacked ability, maybe the kind thing would be to leave him happily sitting on the floor alone with his books.

Maybe he was happy there by himself, but I also know that he was happy when a few months ago he wrapped his little arm around my neck and gave me a kiss for the first time.

Even so, I am going forward with more genetic testing. If there is an answer in the sequence, I still want to know.

I used to think that autism appeared one day and changed my son. When I began this essay I wanted it to be about how my son was a hybrid of himself and autism. But really, autism was part of him all along. I am the one who has become the hybrid.

I spent my life before Jack unconnected with autism. Now, it is my life: in my life, my house, my writing, my brain, and my heart. I begin each day thinking of autism. I’ve become the autism lady, always ready to regale people with my laundry list of facts and opinions. Now those opinions include the possibility that perhaps my son has benefited in some way because of his hybridity, his sequence.

Moments are more important to me now than milestones. I judge my success as a parent, and Jack’s success as a child, not on achieving the goals we set, but on attempting them. I have hope and am more willing to entertain the impossible. If I had never thought my son was capable of reading, I would not have been listening, and I never would have heard his words.

Sarah Belliston lives in Utah with her family while she attends BYU for her MFA in Creative Writing. She loves a good book, a good movie, and a good musical but hasn't figured out how to do all three at once. 

Mamaloo

by Debra M. Fox

falling snow…

we sit in lawn chairs

without talking

When the Rover “Curiosity” made an elegant landing on the Martian surface, he did not know. He did not know that the twentieth century’s last two decades were the hottest in four hundred years or that there has been an upsurge in extreme weather events. Closer to home, he did not know that his older brother, Alex, graduated from college, has a job as a reporter at the Pittsburgh Post-Gazette, and likely will not live at home again. He is fifteen years old, non-verbal, and severely autistic.

His mother experiences time differently, with him in the world. He continues to grow older, but unlike most people, his awareness of certain events does not grow keener. He hears the phone ring, but doesn’t make the connection that he can talk to people who are not in the same location as him. He is aware it is pouring rain outside but not that the cause is a devastating hurricane. He eats waffles and bacon on Sunday mornings, but doesn’t understand that bacon comes from a pig and that you have to kill the pig before you eat it. Cole, one of his cousins, was born when he was eleven, and even though Cole is a baby, and he can do things Cole can’t, such as walk, and eat solid foods, and ride a bike, it is only a matter of time before Cole will catch up and then exceed him. Put simply, he is not following a conventional time-line.

What do the following people have in common? Irv Zimmerman, Beatrice Bailis, and Gershon Fox. Like Cole and like Alex, they are all related to him. Irv Zimmeran was his grandfather. He was a neurophysiologist who looked like Jerry Garcia and taught medical students. Beatrice Bailis was his great-grandmother who cooked the best sweet and sour meatballs anywhere, and Gershon Fox was his great-grandfather who could sew a man a three-piece suit in an afternoon. What else did they have in common? They all died before he was born. They didn’t know they would have a grandson or great grandson who would never talk. They lived their entire lives in a sort of innocence (those are his mother’s words). And just as they would never know him, he can never understand their existence or their relationship to him, no more than he can know about Martian Rovers or cousins who will grow up and change and live lives he cannot know.

There are moments, though, and this is where it gets confusing for his mother on an emotional level, when he appears perfectly normal to her.  After dinner for the past three months, he has taken to listening to Mozart sonatas. He turns off the light in the living room and stretches out on the sofa, with his hands folded in his lap, and listens to an entire CD in one sitting. He doesn’t like when his parents try to move him along for bedtime. Listening to this music gives him extreme pleasure.

His mother tells his father that the sight of him stretched out in the dark, listening to music makes her think of Pinocchio and how much he wanted to be a “real” boy. She says she is fooled for moments into thinking that he is ordinary, just like any other boy his age. But scenes like this can as easily be flipped around. She has dreams where everybody else in the world is like him, and she is the only one like her. She still struggles to understand who he is.

There’s a poem, “Another Summer Begins,” by Mary Oliver:

…The white blossoms of the shad

have opened

because it is their time

to open,

the mockingbird

is raving

in the thornbrush.

How did it come to be

that I am no longer young

and the world

that keeps time

in its own way

has just been born?

I don’t have the answers

and anyway I have become suspicious

of such questions…

His mother is suspicious of these questions too. For her there is a weird co-existence of his childhood leaving but all the trappings of innocence remaining. His breath no longer smells like cookies when he wakes up; he has hair under his arms; his cheeks are no longer smooth; his legs are growing hair all the way up and down, and they’re beginning to take the shape of his father’s. His fingernails aren’t soft, and they’re becoming square shaped like a man’s. When he utters sounds, his voice is deeper, and that’s unexpected, because he is not saying anything intelligible.

Like a baby who has not yet learned to speak, he makes rhythmical sounds like “na na na.” He is not self-conscious. He simply enjoys the sensory experience of vibrations in his throat, and the sound as it enters his ears, and the repetition satisfies him intensely. His mother thinks of birds that repeat song cycles, over and over, their throats warbling, their bodies relaxed. She sometimes wonders what it would be like if a flock of beings like him gathered into a space, like birds to a tree, and made their repetitive sounds, not all together, but more staggered, to form a multi-faceted whole. People who listened would feel like they were there, but not there, occupied, but not occupied. It’s a state that frees the mind.

There is a bed in his room, but he doesn’t like to sleep on it.  It’s too straight, and he likes to burrow and curl when he sleeps.  So, he migrates, once the light is off, to a blue loveseat across the room from his bed. He likes to put his head under the pillow where people press their backs, and drape a leg over one of the arms. He likes closed, squeezed places. He wants to be surrounded, and his bed is too straight for that. Besides, his loveseat smells like him in a way that his bed doesn’t. It smells of saliva and shampoo and suntan lotion and dog. When he is surrounded by those smells, he can sleep.

If you walked into his bedroom, you wouldn’t know how old he is, and that wouldn’t bother him. He has toys on his bookshelf with which he still likes to play, but not for the purpose for which they were intended. Take the wooden ball toy, for instance. He places his head very close to the balls as they roll down the track, and there’s an imperceptible interruption of air on his cheek that thrills him. He likes to observe the balls, first red, then blue, out of the corner of his eye—not straight on.

He has a keyboard in his bedroom that plays four tunes, one right after the other, in a continuous loop. He likes to press the keyboard right up to his ear, not just for the sound, but for the feeling of the music running through his body, right into his bloodstream. He can live in that world for a very long time. Only, it disturbs his father if he turns the music on in the middle of the night. He’ll tell him to stop, but it’s not easy to stop outright. He has to do it in stages, in gradations, the way an airplane doesn’t just drop out of the sky, but lowers slowly, losing altitude in steps. A keyboard is a toy even a teenager could have, which is what he is. But the ball toy is for a toddler. His mother knows that, but lets him keep it anyway.

Like the sound of the ball, there is something mesmerizing to him about snow, especially the first snowfall of the season. While some children might run outside and throw snowballs, or build a snowman, he is content to be amongst the snowflakes, watching as they fall from the sky. If it is nighttime, he likes to turn the outside porch light on and stand at the door, watching the snow come down. Just last year, when he was fourteen, his mother and he put their coats on and sat outside on the back porch, watching the snow pile up, without speaking a word. This is not something his mother could have done when he was younger, that is, enter his world fully and not have any other expectations for them than to sit quietly together in the snow.

While change comes very slowly for him, it would be a mistake to say he hasn’t matured in some ways. For instance, he knows more things than his now four year old cousin, Cole. He knows how to dive into a swimming pool and retrieve a toy torpedo from the bottom. He knows how to put together a one hundred piece puzzle in less than fifteen minutes. He knows how to direct you to the mall if you don’t know how to get there.

Also, it would be inaccurate to say he doesn’t talk. He does, but some of the words are made up, even though they have the same meaning for him as words have for anybody else. Recently he’s figured out how to make more meaningful utterances. His mother doesn’t know why he is able to do this at age fifteen when he couldn’t when he was younger. He’s chosen a sound he likes better than the word “moon.”  It has elements of the word “Mama” in it, which is comforting, like looking at the moon is comforting. The word is “mamaloo,” with the accent on “loo” because after all, that is the part of the sound that tells you he’s talking about the moon.

Here is a poem by Michael Ketchek that his mother imagines he would like if he could understand it. It reminds her of the two of them enjoying the moon together, just like the word “mamaloo” implies.

summer evening

light that touched the moon

touching me

This poem makes his mother feel connected to the world, and the things and people she loves. It is reassuring to her to know there are constants in the universe, and even if her son is wildly different from most people, the light that touches the moon will still touch him, just like it touches everybody else.

Life isn’t without its frustrations for him. He can’t completely communicate what he is feeling to those he cares about. His mother asks him every day how his day went. She puts up both hands, signaling left means good and right means bad. She asks him to tap the hand that answers the question.  He taps, but if she then asks “why?” it becomes very complicated, and his talker and sign language are usually not sufficient. So their “conversations” are often not very long.

Nevertheless, they have other ways of relating to one another. Every day for as long as they can remember, they take walks over the same route. First they walk to the high school, along a busy road, then they meander through the suburban streets of their neighborhood. It is a way of communing, breathing the same air, with no pressure to speak. And it’s not as if there’s no communication. He likes to point out whether the moon is out, if the bees have abandoned the dried out lavender, or if the snow is gone. He remembers the gingko berries that fell in the fall, and reminds his mother that she made him walk around them. He remembers where a dog pooped on the sidewalk and tells her jokingly through sign language he wants “more,” poop, knowing it will make her laugh.

There is a house that they pass along their walk every day that is of particular interest to him. It is a place where he first learned that bees will sting if you try to catch one with your bare hand. It’s a place where stargazer lilies bloom in July for a brief two-week period. It’s a place where, when the dried out leaves from the oak tree make an eerie rustling sound, you could swear you are listening to the reed section of the orchestra playing “Peter and the Wolf.” It is an infinitely intriguing house, one that is in constant flux from one day to the next, a perfect point of conversation for the two of them, if they’re in the mood to talk.

Now that summer is almost over, and he is approaching his sixteenth year, they seek out this house more than ever. He loves this time of year most, when the August sky takes on the color of ripe plums, and the last of the rudbeckia is in bloom. The bees seem fatter and slower as they hover around the clematis, and he has acquired a new respect for them.

They sit on the sidewalk right in front of the house, making it impossible for anybody to pass, not that it matters, as very few people ever do. They watch as gypsy moths quietly flutter to the patio light, recently turned on as a last splash of orange sunset streaks across their faces. He allows his mother to place her fingers on his cheek, and she leaves them there, just a little longer than usual. At times like this, he wishes he could tell her that even if he doesn’t understand many things, and even if he is developing differently, that he feels a closeness to her unlike any other person he has ever known. A poem by Stephen A. Peter describes how his mother senses he feels when they are together at this house:

starry night

the space in me

she fills

He is looking forward to tomorrow morning, because it will be Sunday, the day his mother makes waffles. The word he utters for waffles, would sound like gibberish to most people who don’t know him, but his mother and father understand it perfectly well. He cannot say the “w” sound, so he begins with “ah.” He then draws out the “ff” sound for as long as he can, because it pleases him to do so. When he gets to the “l” at the end, it sounds like a French song, where at the end of a phrase, the “le” sound is made. He thinks it delights his parents too, to hear him say this word, because they always smile and say, “good talking, Matthew.”

When the warm waffles are first placed before him, he savors the moment when the syrup is poured on, when it pools into the holes, and overflows onto the plate. He knows what it is like to be a waffle at that moment, to be crunchy on the outside, but receptive to sticky substances, to welcome the feeling of being filled up. While it is true not every hole is ever filled completely and perfectly, enough are, enough to feel that the world is a good enough place for him.

Debra Fox’s poems have been accepted for publication in various haiku journals. In addition, her short stories and essays have been accepted for publication in Hyperlexia Journal, Blue Lyra Review, Squalorly, Embodied Effigies, Chamber 4 Literary Magazine, Burrows Press, and The Meadow. She is a lawyer and the director of an adoption agency. In her spare time she loves to dance. She lives

just outside Philadelphia with her family.