Nonfiction | September 01, 2002
iloeyuyl. Iliketo goforrideswithyu.
Ilikyutoreadbookstome. Love, Craig
The Atlantic in October is cold but not frigid, at least not in southern Maine, where Craig walks barefoot in the receding tide, pant legs rolled halfway to his knees. He’s invented a game, taking mincing steps into the shallow froth until a large wave slaps his shins, and while its action involves only him, sound effects—Oh no! Look out!—are crucial. Because my son does not speak, these fall to me. From drier sand a few feet away, I loudly feign panic whenever a new surge makes for his legs: the shriller my voice, the harder his laugh as he baby-steps back-ward, teetering to balance.
I’m tempted to shuck off my own shoes and wade beside him, but Craig tends to stop and whine whenever somebody draws too close or interrupts with noise. If he abandons this particular game I’ll have to suggest something else, and options are limited. We could take a ride up the coast, maybe putter through Ogunquit, but already I’ve driven five hours north to rendezvous with Diane, the paid care provider who has become his second mother, and collect my autistic son for our visit. Back at the motel there’s television, but who wants to loll inside on a sunny day? Best save sedentary and indoor activities for tomorrow, when rain is expected and energies may be low.
Plus I want time to inspect. We haven’t seen each other since spring, and though Diane and I talk regularly by phone, I need to observe for myself Craig’s height, weight, posture and skin tone. I note his bright eyes, recently trimmed hair and soft, clean ears. Like a mother handed her newborn, I have an urge to unwrap and examine; if we had time and space, and casually undressing one’s nineteen-year-old son even innocently didn’t seem such a strange thing to do, I’m not sure I wouldn’t peel every shred of clothing from his body and study each surface and texture, from the whorl on the crown of his head to the tips of his long, bony feet. Is he well? Comfortable? Well rested? Happy? Craig does appear happy; also taller, heavier and older. In the water at Long Sands Beach he steps forward and back, hands to his chest, grinning broadly with pleasure of his own manufacture. I stare when he’s not looking, disoriented by his size. He’s nearly as tall as I am.
Is this what grandparents go through? Separated from this child for months at a time, I see evidence of his growth only irregularly. The sequence of his evolution seems more flipbook than film: off-speed, jerky and riddled with gaps. And the bigger Craig gets, the more evident his disability, adding to my transitory confusion whenever I see him again. When he was smaller, quirks in facial expression and behavior were less incongruous because physically he was also immature. As long as his child’s body was still a work in progress, his oddities seemed impermanent. Developmentally speaking, all doors remained open. But now, the same age I was at his birth, Craig is nearly complete, his mustache and budding belly proof that physically, at least, childhood is gone.
* * *
Before his seizures began, when he was nine, Craig produced most consonant sounds. Vowel sounds were harder. The only one he made consistently was a soft U, so that most consonants came out buh, duh, muh. At his most talkative and intelligible stage—just prior to beginning seizure medication—he attempted combinations of simple consonants, the clearest of which was wah-duh for water.
Facial expression, gesture, body language, tone and context were critical to understanding him. To me and his father and his brother, Kyle, and to teachers at school and neighbors up the road, wuh could mean any number of things. We learned to ask endless questions:
Wheel? Wall? Wood?
You want wood?
Oh! You want to put wood in the stove. No, Honey, the stove is hot. Let Mummy do it.
Yes, hot. Don’t touch!
This approach worked fairly well for those who knew his communication patterns and areas of interest, but the system broke down when Craig tried to string together several of his makeshift words or to communicate abstract ideas. Increasingly I said to him, I don’t understand. Try again. There were days, before medication, when he stared into my eyes and sighed, as if telepathy might will me to comprehend. But frequently he walked away, disappointed and even furious. In frustration he chewed his shirt or wrist, his jaw shaking with effort, leaving holes in his sleeves or red welts on his skin and always lots of spit.
* * *
When somebody asks me what autism is, I say it’s an organic disorder of the brain. Objectively this is true, though just decades ago, when autism was first identified in 1943, some doctors believed it to be a psychological disorder caused by poor parenting. Today such a claim seems outrageous—recent evidence suggests that impairment may begin at least ten weeks before birth—yet this early supposition was based on real observations of children whose language and socialization skills developed normally throughout infancy but vanished bafflingly before age three. Because not all afflicted children fit such a dramatic diagnostic profile; a clearer definition of autism eluded researchers for decades. Craig, for example, never developed and lost normal speech; neither did he sit on the floor and twirl his hands, another classic but sometimes absent sign of a disorder that to varying degrees affects up to one and a half million people in the United States alone. If he’d been born in 1962 instead of 1982, he might have been misdiagnosed as profoundly retarded, like so many others through the ages. Autism is as old as humankind, surely; scientists have documented it in every region, race and religion in the world. Still, because it is a spectrum disorder, manifesting itself in wide varieties and degrees of symptoms, and because there are other conditions with similar symptoms—Asperger’s syndrome, Rett syndrome, childhood disintegrative disorder—it is difficult to diagnose. Craig’s autism was not confirmed until he was eight. Before that doctors worked to rule out a host of other mysterious maladies: fragile x, Angelman (also known as happy puppet), Williams syndrome, Prader-Willi.
Unfortunately, while scientists now agree that autism is caused by abnormalities in brain structure and/or function, they still can’t say what happens and why, or which combinations of factors spell developmental doom. Some suspect an irregular segment of genetic code or a small cluster of three to six unstable genes; others are focusing on cell migration, neurotransmitters, limbic system abnormalities and low levels of activity in the parietal areas of the brain, where tactile sensations, sensory comprehension, language and reading and some visual functions occur. Others still are studying the corpus callosum, a thick bundle of nerve fibers that allows messages to be transmitted from one side of the brain to the other. Viral or chemical exposure may also be a factor, but at present no one knows what triggers autism.
Me, I keep my explanations simple, focusing not so much on what autism is as on what it means. To those who ask, I say the wiring in my son’s head is faulty. Electrical impulses that represent physical and emotional reactions get mixed up. Sounds the rest of us don’t notice may drive Craig to distraction. If I fall down and scrape my knee, I cry. If Craig falls down and scrapes his knee, he laughs. And so on.
What people really want to know—some of them, anyway—is whether Craig has any surprising or unusual talent, like Dustin Hoffman ‘s mathematically gifted character in the movie Rainman. Well, yes, sort of. His memory at times appears near photographic. He can spot something amiss in a familiar room within seconds of entering. Given a thick phone book or catalog, he memorizes locations of favorite pictures and logos. And, I believe, he can read.
When Craig was six and Kyle three, I sat on the kitchen floor and told Kyle, then learning the alphabet, to go to the refrigerator and find a P in the riot of bright magnetic letters covering the door. Craig, who was closer, turned and plucked a plastic P without study, then carried it over and placed it in my hand.
The door was a mess of upside-down and sideways letters. I myself couldn’t have found a P so quickly. Was this a fluke? I directed Craig: Find me a W. Find me a B. Find me an A.
No hesitation, and no errors until he handed me a K for an X.
Hey! This isn’t an X!
Giggling, he returned the K to the door and brought me the correct letter. We played this game on and off for weeks, until one day he looked at me blankly and left the room. I was never again able to get him to play.
Of course some people are just nosy or even callous when they try to determine how different my son is. A neighbor in Maine once phoned to ask why Craig—who had just begun having seizures—always got to sit in the front seat of the school bus, near the driver. Craig’s special privilege (her words) prevented her daughter and others from having the same opportunity. This woman—later a Girl Scout troop leader—wanted to know if I thought this was fair.
But most mean well when they ask what Craig can do. I believe they’re trying to establish a situation in which I can brag about my older son, just as I might about Kyle. They are saying, with the best of intentions: Aren’t all children remarkable?
I want to shout, Yes! Of course Craig is remarkable. But when he’s identified by the novelty of his visual acuity—about as useful as a parlor trick given the hit-or-miss nature of his expressive abilities—I find it hard to respond enthusiastically. Still, I don’t demur because that would seem ungrateful, like giving the finger to whichever god or gods showed enough mercy to give me a son who can walk, eat, laugh and hug. Before Craig entered kindergarten he attended a preschool program designed partially for children who sat motionless in wheelchairs and special slings all day, mouths open to the ceiling. Tiptoeing past them as I walked Craig to his room, I couldn’t help but think that our family had been extraordinarily lucky.
So I never know what to say to people who want to know about Craig. I appreciate opportunities to crow, but to romanticize disability is wrong. There is this myth in our culture that if one sense or limb is crippled in some way, others will overcompensate triumphantly, obscuring the handicap. But sometimes none do.
* * *
Looking at Craig’s fingers is like looking at Craig himself. There’s something not quite right. You can see in a glance that the angles are wrong, their motions awkward and repetitive, but they have a grace all their own: long and slender, nearly delicate. These are the fingers he placed on my cheeks years ago when I held him on my lap and sang: Eyes, ears, nose, mouth, teeth, lips, tongue!
And these are the fingers he ran along my lips and inside my mouth, gently and roughly, oblivious to drool. Craig’s spindly fingers are stronger than they look. If you watched them rhythmically brush the pages of a magazine or catalog, you would think his touch more caress than rub, yet these fingers can be vise-like and have gripped mine so hard I have cried out and squeezed back.
Shortly after Craig entered kindergarten, instructors tried teaching him sign language, but he mastered only a few gestures: yes, no, want, please, thunder. He lacked fine motor skills to progress further; his physical reflexes were slow, so signing was abandoned in favor of an augmentative speech device, a portable voice machine the size of a small typewriter. On top of this device were rows of icons that, when pushed, uttered a word or phrase in a nasal, robotic tone.
I loved and hated that machine. On one hand it was a tool, potentially a means to giving Craig a viable method of communication with everyone, not just those who could interpret his strange sounds and gestures. Convincing our insurance company to pay for it had taken such a fight that I felt real accomplishment when the request was finally approved. Securing the augmentative speech device represented progress in a way. Getting something done. Hope.
But Craig never took to it completely. Some days he seemed enthusiastic; other times he resisted going near it. Patient teachers encouraged us to be optimistic, but I grew disenchanted. What now? I had always assumed Craig had so much to say—even now I believe this is true—but his rejection of the augmentative speech device was one more reminder that communication could not be willed—by us or, apparently, by him.
The machine was too heavy to be portable. It stayed at school, inspiring in me ambivalence and guilt. I cheered when all agreed that it should remain in the classroom. I detested the machine’s freakish, synthesized drone. To me the augmentative speech device was never the voice of Craig, but instead the voice of his autism.
* * *
At the beach a black Lab swims from the ocean in front of us with a stick in its mouth. Knocked sideways by a wave while clambering to its feet, the dog momentarily confuses Craig with its owner, bounds over and drops a dripping branch. My son makes no response, doesn’t attempt to pet the animal, kick it or wave it away; he doesn’t even glance downward when the charming dog picks up its stick and tosses it into the air. Craig’s gaze remains level on the next approaching wave.
I should be alarmed. For safety reasons we encourage Craig to remain aware of what’s going on around him at all times, to look out for such hazards as dogs and curbs, cars and cyclists. Yet I can’t help but marvel at his powerful concentration—his ability, when conditions are right, to reduce the world to swells, sand and sound. His is a survival skill harnessed for pleasure. Conditioned for years to filter out disturbing stimuli, he also seems able to ignore the annoying and irrelevant, a talent I envy. What I can’t tell is how extensively he screens, how few elements he pares the world down to. Can he edit out strangers as he does this dog? Dim to halftones anything he doesn’t like? Does he hear every word I say, or just the ones that please him?
Right now he doesn’t seem to be listening to anything but wind and water. Silently I watch him smile toward the ocean, enjoying it so thoroughly and independently that even passersby turn and gaze.
Of course, body language, too, has limits. Soon after the dog reorients itself and runs south toward its proper owner, Craig turns and puts his hand in mine, only to immediately pull it away, repeating these steps over and over as if trying for a better grip. Wordlessly we attempt every combination of hands: mine in his, his in mine; fingers loose, fingers tight; my hand up, my hand down. As we grapple he walks a few steps north, then inland, then back toward the surf. Does he want to walk? Stand in a new position? Leave the beach entirely? To others it might appear we’re engaged in some kind of hand jive, that he’s trying to describe with his hands some discomfort or anxiety he cannot voice, but in fact we’re just trying to get comfortable. I think. Even in this realm I don’t know with certainty what my son is trying to say.
At times like these I despise the necessity of communication. There’s no life without it, of course. Humanity couldn’t survive without the exchange of opinions and ideas. Forget art or literature—there’d be no bread to eat, no medicine, no sanitation, transportation or commerce. To society, communication is water and oxygen combined: elemental, necessary, given. Not so to the individual, or at least to some individuals.
I suppose what I resent are the physical demands of communication, the basic requirements of expression that when combined with a universal bias toward speech effectively exclude my son and other nonverbal people like him—folks with stroke, ALS, multiple sclerosis, throat cancer, muscular dystrophy—from typically full and productive lives. People who cannot speak, write or sign are no less human than those of us who can, yet their inability to communicate in ways the rest of us intuitively understand does relegate them to a lesser existence. While days still can be achingly rich—look at my son in the waves—I can’t register his pleasure without thinking also of joys he won’t know. The claim that a person can’t miss what he’s never had offers no comfort whatsoever. Who’s to say Craig doesn’t appreciate exactly how his life differs from his brother’s?
Similarly, when he and I are able to communicate, when he utters a sound or points to something I understand, when he listens to me carefully and nods, the moment is all the more poignant for its transient serendipity. One of the things I wish he could know—maybe he already does—is that communication is difficult beyond the mere production of words. Like the many multiplications of cells necessary to form a healthy fetus, language in any form is pregnant with potential disaster. Even when we do everything in our power for the best, there are so many opportunities for something to go wrong. What I want to say, what I think I say, what I meant to say; what you hear, what you thought you heard, what you wanted to hear. It’s a wonder that anything we say ever comes out right.
Do you now what f. c. means it means fecilitated cemmunecathin. My Broter has to do that
—Kyle, 7, school journal
There are no cures for autism, despite sensational stories of children miraculously gaining speech or making other significant progress after being fed special combinations of vitamins or having milk removed from their diets or undergoing desensitization to noise through something called auditory training. And no one has been able to protect autistic children from additional disability: mental retardation, which affects three in four; and seizure disorders, which strike one in three (Craig suffers both). Still, treatments and teaching methods abound, and many parents try them all. I was no exception. My son’s doctors were compassionately pessimistic but told me to go ahead with any I wanted to pursue. Why not? When none produced consistent results, I was disappointed but not surprised. With autism, what works for one person does nothing for others. At least I’d tried.
Only one approach ever truly got my hopes up. The idea behind facilitated communication is that a person like Craig lacks enough coordination to point accurately to letters or icons on a piece of paper or keyboard and thus cannot indicate the words he thinks. The theory is that such people may achieve better coordination if they have something to push against. Resistance. In most cases an aide—parent, teacher, friend—supports the user’s wrist and/or pointing fingers, then subtly exerts backward pressure, requiring the user to push forward.
Believers say the result is more accurate pointing and meaningful communication. Skeptics charge that aides guide users’ hands, even unintentionally, just as people move markers on Ouija boards. When Craig’s teachers first tried facilitated communication with him, the debate was loud and spirited, with parents and professionals coming down solidly on both sides.
I agreed with Craig’s teachers that we had nothing to lose. Quickly they sent home laminated sheets of 8½ x 11 paper. On the front was an alphabet; on the back, numbers zero through nine. At school his augmentative speech device was used more for its built-in keyboard than its voice; the heavy machine had the additional ability to print out whatever Craig typed. Printouts of facilitated communication sessions came home from school almost daily on strips of paper resembling supermarket receipts:
Ddnmgy brothr nis still s2k gtodaay. I uwannt yyyhim to come bbbahk. I donn’t 5like it wwenn mhe rstas hom.
(Translation: My brother is still sick today. I want him to come back. I don’t like it when he stays home.)
Mui brogvr pivcttur is hom. I wantd on but mama sed no. I was mad.
(My brother’s picture is home. I wanted one but Mama said no. I was mad.)
In the following exchange, the questions are Craig’s teacher’s as she and Craig typed on the augmentative speech device together:
Why does he make you angry?
Do you know why he makes you angry? No.
Are you angry with Kyle or something else? Tsxccelse.
What is making you angry at home? stftrercfrigefrsator nmakesnnoisd.
Does the refrigerator hurt your ears? Yes
Exchanges such as this seemed to prove that facilitated communication held promise for Craig. The hum of our refrigerator did upset him, to the point where he sometimes clutched his head and shrieked. I began carrying the laminated alphabet sheet into the living room and bedroom, wherever Craig was playing, and asking him questions there: Can I have your car? Is it almost suppertime? Are you hungry?
Sometimes I got an appropriate response: one or more Ys for yes, Ns for no. Sometimes, expecting from the context of my question an N, I instead got K or H or P. Or MMMMMM.
Dilemma. M was nearly N. The two letters sat side by side. Did he mean N? N would make sense. If perhaps he meant another letter, which one? And what about when he typed BFMFBBM, followed by A? What word was he attempting then? BA—? FA—? MA—?
Some days Craig pointed purposefully, with only occasional lapses in concentration; at the end of our sessions, which typically lasted five or ten minutes, I would find in the string of letters I’d scribbled down a word that made sense, a word consistent with something going on around us. Other days he seemed to point at random. The most challenging sessions were those in which Craig pointed with meaning, even enthusiasm, and yet I could not make out a single word. Possibilities proliferated with every letter in the sequence. I began wondering if I was seeing words where there were none, and missing others that were obvious. Even when we put the laminated alphabet aside and Craig reverted to making noises and pointing, my confidence as translator was shaken.
Most days I was the only believer in the house anyway. My younger son shook his head when I asked him if he wanted to try facilitated communication with Craig. The boys’ father similarly begged off, citing errands or procrastinating: Later. Tomorrow. Next time.
Just when I’d all but given up, Craig startled me back into belief. Focused and full of energy one Saturday morning, he fished my wallet from my purse and took out my dull silver Sears credit card, which he loved to carry around the house. An hour later I cornered him in the living room, wanting to retrieve the card before I lost it to the toy box or the space behind the couch. Craig protested until I distracted him with the laminated keyboard. I spoke my questions; he typed his responses.
Did you take my Sears card again?
Can I have it?
Thank you. Why do you like this card so much?
Is it fun to carry around?
What is it made of?
The Sears card was a flat matte gray, unlike my shiny Visa card with its holographic image of a white bird in flight. Still, it was plastic. If I’d
been influencing Craig’s letter choices, he might have typed pblastck.
I set the laminated sheet aside and looked into his face. Metal?
Nod. Smile. Happy breath sounds.
* * *
The majestic lighthouse at Nubble Point looms over us, but my son seems less interested in it than in its busy parking lot, which buzzes with amateur photographers, teenagers and nattering elders. He wants to examine individual cars abandoned by people now brushing past us on their way to the rocky viewing area: “Be careful or you’ll fall on your ass.” “Ashley! Samantha! GET OFF THOSE ROCKS!” We bump along from hood to hood with our backs to the water. Now and then Craig wanders to the driver’s side of a vehicle and peers inside at its dashboard and steering column, ignoring occasional occupants sipping coffee and scanning newspapers. Most don’t mind. Even when they startle, they quickly recognize that my son means no harm and smile, but one old man instinctively scowls and cries out, “Get away from here!” Craig straightens, unfazed. Just beyond the man’s aging sedan sits a shiny new SUV requiring careful inspection.
I’d rather study the lighthouse, with its stark white tower and little fenced-in yard, and I’d love to watch that mesmerizing beacon go around and around and around, even though in daylight its beam is all but invisible, but I can’t mind Craig and look at that too, so I follow behind him while he inspects all the things others ignore: the curled rim of a green metal trash can, the masonry platform of a swiveling rental telescope and the exhaust end of a tour bus that whooshes and psssts! as it discharges passengers. Many autistic people show heightened interest in objects; Craig has this tendency, although now that he is older he is able to take a look at something and move on. Strands of Christmas lights are an exception; if he sees those he wants to stop, sit and stare, for hours if possible. Such perseveration occurs frequently among autistic people, most of whom lack the ability to play by pretending and instead fixate on things.
Craig and I stand near the rear axle for several long minutes, even after the uniformed driver shuts down the engine and steps off to smoke. With the bus idle there’s nothing more to see or hear, but when I nudge Craig—Ready?—he does not move.
Usually I can’t let him stop and stare like this. Crossing the street it’s dangerous; in crowded supermarkets annoyed shoppers shove their heavy carts past my son, unaware that he’s not blocking their paths on purpose. Today, at the edge of the parking lot, he can stand as long as he likes, despite the curiosity of fellow tourists glancing from us to the flank of the bus—Is there something to see? I personally don’t find the silent vehicle compelling, but I wait for Craig as I might wait for someone to finish saying grace: politely, with respect, but ready at any moment to lift up my head and reach for a fork. Eventually he’ll break away on his own, as he does now with a sigh. His reaction is appropriate—just late.
A speech pathologist once suggested giving Craig ten full seconds to respond to one comment before issuing another, the theory being that he needs that much time to process. Of course waiting ten seconds sounds easier than it is; and waiting any length of time—twenty seconds, sixty—is no guarantee that my son will respond anyway. The fact is, waiting pays off so irregularly that patience is less a virtue than a coping mechanism that forestalls my disappointment more than it encourages Craig’s speech.
When a handicapped child is small, disappointments are many but tentative: sure, the baby is late to walk, but he cruises furniture just fine; he doesn’t yet talk, but he makes appropriate noises. Have we been robbed or not? Parents can’t say for sure. There’s no chance to rage and grieve until later, when accounting cannot be avoided. By the time a handicapped child reaches middle school age, parents cannot deny that some milestones will never be reached, and when that moment arrives it is impossible not to rage against everything one did and did not do, even while knowing that despair and anguish are futile.
Everything gets questioned: belief in prenatal vitamins and the no-caffeine-during-pregnancy rule; confidence in doctors who cannot predict or diagnose; even trust in one’s own biology, which somehow failed. Hopes pinned on specialists, early-intervention programs, CAT scans, orthotics fitters, speech therapists and physical and occupational therapy experts all seem betrayed. Love for a spouse can suffer, too: Where is my son’s father during appointments, sessions, consultations, treatments, meetings and blood draws? Are we partners here or not? Even sibling identities get muddied; my second son, developmentally more mature than his brother, is thus both youngest and oldest.
Most demoralizing of all is the erosion of confidence in parental instinct. Even when we know we are making a difference, that we are pursuing every treatment, every opportunity, and that our handicapped sons and daughters function at higher levels as a result, we quickly learn that development is capricious. The magical powers of parental love and attention are, ultimately, limited. We can’t live our children’s lives for them. We can’t thrive in their place. All we can do is continue to pro-vide, protect, model and nurture, doubling, tripling and quadrupling our efforts even when we suspect there will be little substantive gain. What gets lost is not the capacity to be patient, to believe, confide, trust and hope—for of necessity we must continue to do all these things—but blind trust in patience, belief, confidence, trust and hope. We lose the faith or certainty that any one of them guarantees anything.
* * *
Shortly before Craig went to live with Diane in 1993, his seizures intensified. At school he fell and broke a front tooth diagonally in half. At home one weekend he fell outdoors while I unloaded groceries from the car. His younger brother was riding his bike around the house at the time; the boys’ father was working in the side yard. Craig walked toward me, eager to slide into the driver’s seat and play with the steering wheel, when suddenly he went rigid and folded to the driveway, eyes rolling back and body rhythmically jerking.
We had already seen Craig have a number of seizures. Each was a terrible sight, but we couldn’t do anything except wait. Indoors we might move a chair out of the way or roll him gently onto his side, but outside, in the driveway, there was nothing to move. The best I could do was to slip my hand under his head, which lay in a little spill of gravel tracked up from the road. Kyle abandoned his bike and came running. The boys’ father walked over, taking care first to lay down his tools.
I said to Kyle, who looked stricken, Everything’ll be fine. He’ll be okay in a minute.
Like other mothers and fathers, I suppose, I used the word okay a lot, but whereas in other households daily parental usage probably ranged from occasional to regular, in ours back then it was constant. With Craig, I wonder if the word didn’t lose its original meaning, so frequently did I use it as shorthand for cues already given over and over and over. My urging him to step out of his pants before his bath would sound something like this: Lift up your leg. Lift up. Your leg. Leg, honey, leg. Lift. That’s it. Okay. Okay. Okay. Over time, in our household, those two short syllables—Oh-Kay—stood substitute for every possible word of encouragement and comfort (also resignation and disappointment), suggesting, ironically, the same sort of bizarre language usage common to those autistic children who possess the ability to speak. Some parrot what they hear, repeating what others say verbatim or else calling out words and phrases—Toast! Lights out!—completely out of context, with no apparent meaning whatsoever, a phenomenon known as echolalia. Others confuse I with you or associate certain verbal expressions with activities or feelings, so that, for example, Set the table is used to convey any thought or desire relating to food. In this mariner the phrase has actual, practical meaning but is used in place of direct, clear language: Is it time for supper yet? I’m hungry. Will you make mashed potatoes? For me the okay became something to say in any kind of situation, meaning everything and nothing.
On top of my hand, Craig’s heavy head jerked. His eyes twitched behind closed lids. His mouth was open, but he drew no discernible breath. Already his face was white, nearly gray; now his lips turned blue. Watching color drain from his face was like seeing a time-lapse film of life taking leave of a body. I never got used to the horror of glimpsing him dead.
But I kept my voice cheerful and my manner calm. At age seven, Kyle seemed bent on assuming every shred of vigilance his father shrugged off. Of late he’d been experiencing headaches, nosebleeds and other symptoms of tension. Even now he crouched anxiously by my side while my husband stood and stretched. I said to him, Really, it’s okay. Everything’s okay. If you want, you can go put your bike away. Then we’ll get Craig inside and have lunch.
And that’s what I needed to say, because even though Craig would later spend the night in the hospital, having one seizure after another as I napped intermittently in a chair by his bed, he did, within a minute, relax enough to be carried inside. And Kyle’s bike did need to be moved from behind the truck, where it lay, and it was lunchtime for the rest of us.
But what I wanted to say to my second son, rushing from his bicycle alarmed, was that the look on his face was exactly right. Things were not fine with Craig or with our family. What was happening all around us and to each of us was not okay.
* * *
Either Craig wants a kiss or else he intends to lie down with me. I’m not sure which, but here he comes, giggling and stumbling from his own bed toward mine in the cheery motel room in Maine. A late-afternoon nap appears out of the question; our time at the beach seems to have energized rather than tired him. Bent now on mischief, he trips on a fallen pillow in his haste and pitches forward, landing beside me on the mattress with such clumsy force that he nearly bounces onto the floor. We laugh until we groan, then snuggle quietly while the television plays.
Craig is a twitchy cuddler, stiff until he finds a comfortable position, then lank dead weight. I murmur into the back of his head, Stop hogging the bed. He giggles and adjusts his legs until finally we both lie still and I concentrate on the warmth and smell of him. I could easily sleep for an hour curled up like this, but soon I must give him his mid-day medication—a thick red syrup smelling vaguely of cherries—so I fight the urge to doze. Twenty minutes later I rise and paw through his backpack for bottle and measuring cup, noting also pajamas, change of clothes, deodorant stick. There’s no sign of his new augmentative speech device, which I forgot to ask Diane to pack. A flicker of disappointment gives way to relief. I’m eager to try this new machine with my son, hopeful as ever that we’ll have some exchange, but the truth is that simply walking with Craig requires strategy: The last thing I need is a valuable machine to carry around, much less haul out and integrate into every activity that may or may not yield conversation.
Don’t get me wrong. I want to believe that this new unit, smaller and lighter than the original, is the tool we’ve all been waiting for, the very article that will deliver my son from silence. But I suspect that no technology can do such a thing, and I wonder if all we caregivers are doing by doggedly pursuing Craig’s use of it is perpetuating a communication method as artificial as it is well meaning.
Barring my son’s enthusiastic adoption of this versatile technology, can any machine ever help him vocalize spontaneous thought? With icon-based devices, other people decide which words and phrases to attach to each button, and of necessity we keep them simple: want, water, I need a break, bathroom, yes, no. These choices are logical, but how much duller could they be? No wonder Craig has traditionally preferred grunting and gesturing. Except for the brief period when he enthusiastically used the first machine’s keyboard feature for facilitated communication, he pushed the flat round icons on its surface without enthusiasm, as if to please us. In a sense, the first augmentative speech device taught him not to communicate with us, but to communicate for us, to perform.
* * *
People within our culture assume that parents of special-needs children fall into one of two camps: the first composed of selfless near saints—God only gives special kids to special people—willing to sacrifice jobs, vacations, physical fitness, mental health, what-have-you, forever, until we die, never expecting less than a miracle cure; and the second made up of self-indulgent cowards too selfish and materialistic to place the simple needs of their children (All they need is love!) before their own—quitters who give up when there’s still much promise at hand.
People from the latter camp may graduate to the former, but members of the first can never leave without censure. To try and forge any new model is to reject society’s narrow view that parental commitment is measured by sacrifice, with highest marks going only to those who risk utter emotional and familial bankruptcy.
Until Craig was ten, nearly eleven, it never occurred to me that I might fail to meet his needs, that physically and emotionally I might simply run out of gas. Even as he grew taller and heavier and lifting him after seizures became more difficult, I believed I’d at least be able to drag him, possibly into his twenties. Denial about limitations—my own and his—seemed sanctioned by doctors, therapists and teachers who encouraged me always to hope for more, believe in more. How could I nurture my son to his highest potential unless I ignored the concept of limits? A mother’s love and determination must be endless, timeless, tireless. As I saw it, my job was to believe forever in Craig’s abilities and mine, to serve as his primary caregiver until the very end of my life.
The breakdown, when it came, began slowly, insidiously, with me realizing that all the independence skills we’d worked so hard to teach him (dressing, toileting, chores) were just increasing the level of his dependence and would continue to do so because somebody—away from school, this was me—always needed to be present to set up, monitor, guide and reward him for every new thing he did, every last thing: slipping into a jacket, reaching for toilet paper, carrying a sponge to the table. His needs for hands-on assistance and full-time supervision would only multiply. Already I’d come to feel like an extension of my son, both puppeteer and puppet, my hands constantly over his, initiating communication, waving, zipping, even wiping his bottom. His development to something approximating my level required my regression to his; instead of separating as mother and child are supposed to do, we passed each day fused. I was Craig as well as his mother, and increasingly uncertain as to what either of us thought or wanted.
Contributing to the crisis were the dulling effects of Craig’s seizure medication. He moved slowly, like an old man, lifting his feet and lurching across patterned floors, mistaking lines for steps. There were signs of confusion on his face, an unfocused look in his eyes. I tried frantically to lure him back to his previous level of functioning with extra attempts at facilitated communication, with games, songs, stories and hugs, but nothing worked, and the gradual absence of my son’s personality was far more painful than dealing with the seizures and autism combined. Worse yet was the silence. His vocalization slowed, then stopped, except for laughter and growling, and I began to mourn the loss of a child who’d previously been sharp and bright-eyed, who’d had good coloring and quick reflexes, who laughed easily and often and called Muhmuh so many times each day that at night my head rang with it. He fell silent for long periods, then growled or laughed maniacally for hours. He slapped me full in the face, hard, when I bent for a kiss. My distant husband drifted further away. My younger son grew more self-sufficient but also more apprehensive. I began to daydream of crashing my car into a tree.
Bend or break, said my counselor, my doctor, my friends.
* * *
Three months before my husband and I separated and Craig went to live with Diane, the boys’ father and I told them we were going to divorce. At the time we both assumed the boys would live with me; we had not yet conceived the notion of yielding full-time care of Craig to somebody older, calmer, fresher. We called them into the living room area in the house we were renting while a new place was built, a spacious two-story saltbox into which only Kyle and his father ever moved. My husband and I took turns speaking.
Our voices quavered and we had tears in our eyes, but we got through it. We said that it wasn’t their fault. That we would continue to love them and take care of them. That it was a very bad thing that nobody should have to go through. That we were sorry.
Kyle’s tears I expected, but Craig’s I did not. Tears were rare for Craig, who otherwise just fussed or growled. Only once before had I known him to sob, and that was when his father chastised him for striking Kyle, for not acting like the big brother he was. But I had never seen him like this. When I reached for him he was inconsolable, his cries pleas like keening. I had never heard such an awful sound. For once I knew exactly what he was feeling, and I wanted to cover my ears.
* * *
For supper we drive back to the beach and find a pizza place lit up in neon. Craig and I take a booth in the front window while my husband—my second husband—walks to the counter and orders. He’s joined us for the evening in case I need help. As it turns out, Craig and I have had a wonderful afternoon, perhaps our best ever. My son seems content and relaxed; I feel tired but not tense. Outside the glass, a red sign glows in the chill night air. Craig stares, fascinated, at the curves of each letter, the squat, rounded angles of each Z and the rusting metal brackets holding the whole thing in place. After that he turns his attention to the soda bottles and plastic forks and knives Bob delivers to the middle of the laminated table. While my husband and I sit and chat, Craig studies our collected bottle caps, rubbing the ridged edges gently with his fingers, then sighs happily when I make writhing paper worms by dripping tonic on the scrunched-up sleeves of our drinking straws.
I’m eager for conversation but have trouble concentrating on what my husband is saying because now and then Craig raises his head and looks me full in the eye, wearing an expression I’ve spent all day trying to decipher. He’s had about him, this visit, an intriguing sense of autonomy, an air of intellectual independence I have not seen in years. Partially I’m not surprised at this increased awareness: since beginning a supplementary medication nearly two years ago his seizures have diminished in both number and intensity; on the phone, Diane and I share amazement at how dramatically he continues to “wake up” in terms of energy and alertness. But there’s something else. In addition to immediate sensual pleasure itself (neon, Mountain Dew, the yeasty smell of baking dough), he seems to have an appreciation of pleasure. Craig is not just happy but cognizant of his own happiness. Joy rises in me like a tide, so pleased am I to be surprised. In the shadow of Craig’s complete and ongoing dependence I’d not yet imagined him graduating from his childish perspective—This feels good now—to the adult—This feels good because. How many of my other assumptions about his adulthood will Craig prove wrong?
Of course it occurs to me later, lying in the dark while Bob and Craig sleep, that there is a troubling undercurrent to my son’s emergence from adolescence and medication fog: he’ll have questions. Does he remember how our living apart came about? If I think of him as two children sometimes—one before seizures and one after—does he think of me as two mothers—one who was there and one who left?
I no longer care how he might do the asking, whether by speaking, gesturing, typing, writing or facilitated communication. I no longer believe that any one method will or must prevail. Teachers may keep encouraging my son to use his new augmentative speech device if they like; indeed, they must-that’s their job. And when I have an opportunity to use the machine with Craig, I’ll do what I can too, but no more, knowing now how much connection I sacrificed during all those years of striving, when I knew what Craig wanted from his sounds or gestures but stubbornly refused to show comprehension until he pressed a button on a machine or tapped out letters on a laminated piece of paper—requiring me to sit not in front of him, where I could watch his amazing face and let him touch mine, but beside and behind him, denying us both a view. If I’d known then that my years with him would not stretch on for decades but end abruptly in crisis, I wouldn’t have emphasized the machine at all. I’d have given up sooner, for whatever extra contact that gave us.
* * *
Every year or so I dream that Craig speaks. His dream words are never dramatic in and of themselves. Instead he says minor, conversational things, appropriate to whatever scene my subconscious has created: Nice out today. Or, Did they leave yet? His years of silence are never explained. What wakes me, always before I’m ready, is his voice: quiet, low, a bit husky. A gentle, confident voice, forming whole, intelligent words.
In my last and most vivid “Craig speaks” dream, I pass through a door in the loft of the log cabin in which we once lived, before the splintering of our family years ago. Then I’m at the edge of an unfamiliar lake on an overcast day. I am worried and a bit sad.
Before me is a long, narrow dock. Craig sits alone, perhaps three-quarters of the way out, the way he sat as a little boy, with his feet tucked underneath him and splayed, like fins. He appears to be thirteen or fourteen, much older than when we moved from the cabin. In the dream this confuses me, but before I can figure out what we are doing here and how there can be a dock jutting from the loft, Craig leans over the edge of the dock and peers into the still water. The dark surface reveals only mirror images of trees that line the lake: no darting fishes, dock supports, pebbles or sand.
I jolt forward to grab him before he tumbles in, but as it turns out he has full control over his large and heavy head, and hearing me hurry down the dock, he turns and looks at me, grinning. I know from the way he moves that he is no longer autistic. Perhaps he never was. I am so overwhelmed with relief that when he speaks, saying something like I wasn’t going to fall, I hear but do not register actual words. I take a seat beside him and dangle my feet above the water.
After waking I spend hours puzzling over the meaning of such dreams, for the obvious—Craig will be fine!—is too neat a solution, even for this sentimental mother. There’s an inevitable cheapness to dreams that erase disability; magic is for children, and I am not a child. Perhaps my subconscious is punishing me for doubting, for do I really believe my son will develop speech this late in life? Haven’t I known all along that like half of all autistic people, he’ll remain mute forever?
Inevitably I conclude that neither meaning is likely, for dreams are like seashells held to one’s ear—elegantly shaped but hollow. Sure, I can hear waves if I close my eyes tight, but concentrating takes work. I have an uneasy relationship with silence these days. If an expected sound doesn’t materialize, a voice—my own—rushes to fill the void. And then there I am speaking as Craig but talking, absurdly, to myself: Here is a catalog. Here is K for X. Here is a little piece of metul.
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