A candid portrait of a differently abled young man poised at the entry to adulthood, Next Stop recounts the complex relationship between a child with autism and his family as he steps out into the real world alone for the first time. This personal narrative of a mother’s perpetually tested hope is a universal story of how our children grow up and how we learn to let go and reclaim our lives, no matter how hard that may be.
|Publisher:||Penguin Publishing Group|
|Sold by:||Penguin Group|
|File size:||1 MB|
|Age Range:||18 Years|
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We had spent the tail end of that summer riding the Metro my son David and I not so much going anywhere, just riding from stop to stop. Counting the look- alike stations between Clarendon and Metro Center, hugging the right side of the escalator to switch to the Red Line, then coming up for air in the river of humanity that is midday Chinatown in Washington, D. C. So it goes, when your handsome twenty-one-year-old is a rangy six- footer with a sexy five o' clock shadow and the mind of a good-natured adolescent. Pervasive developmental delays cause their own set of problems, and David's is a kind of exuberance that reveals itself by his swinging an imaginary baseball bat whenever he's really happy. Feet squared, wrists piled up high on his right shoulder, and swoosh! The impulse reflects an open innocence that's way too friendly when it comes to strangers. At Eighth and F, NW, when a homeless man asks him for change, David pulls out his wallet and says, "Okay, how much?"
But if he could learn to ride the Metro, my husband and I believed, then he could travel to a job site; and when he locked down that job, he could pay his rent. With a job and an apartment, he would have a real life. And who knows? Maybe even find somebody other than his dad and me to love him well into the future. It was a goal we could all agree on. David swung his imaginary bat whenever we talked about it. So at the end of the summer David and I got cozy with all the different Metro routes. We visited the zoo and met the guy
who scrubs the elephants' backs. We surfaced in Chinatown , where David walked around with a starry-eyed look on his face because of "the pretty Korean girls." One morning, we hopped off at the Smithsonian for him to run to the Lincoln Memorial while I waited on a bench in a light downpour. David had a passion for running. Ever since he was a child, he could run like a deer, and in high school he had run cross-country. At the Arlington National Cemetery station, we followed the path to Section 60, where we sat beside a nineteen-year-old marine's grave and talked about the war in Iraq . David would like to be a soldier, and he wasn't interested in my political musings. Instead he wondered if the soldiers had lived a good life before they died. Another day, we raced up the escalators toward the wrong train and ended up in Shady Grove, then doubled back and rode home the long way. We didn't have anywhere we had to be that afternoon. No worries.
It stayed that way until the August evening when David told me he was ready to go it alone. We both knew this was coming; it was, in fact, exactly what we'd been working toward. I just hadn't realized he'd be ready sooner than I was.
David, my third son, was born in 1987. He was a failure-to-thrive baby who spit up half his birth weight during his first months before doctors diagnosed reflux and mild cerebral palsy. He did not walk until he was three and a half. At age five, a neurologist concluded his developmental delays were attributable to a combination of autism and static encephalopathy, a brain pause that impairs intelligence, like a circuit misfire in the brain. Imagine driving through the mountains, hitting static on the radio, and suddenly losing the music. Sometimes David loses the music.
But by the time he turned seven, every doctor we saw offered us a different diagnosis. A specialist tagged on a mean mix of ADHD, obsessive-compulsive disorder, and Tourette' s syndrome, a neurological disorder of involuntary and repetitive motor and vocal tics. The tics include eye blinking, head or shoulder jerking, facial grimacing, and, in David's case, snorting sounds often combined with an upper body twist, a hop, and a punch to his own mouth. Just watching this child sleep could wear me out. By age fifteen, David had grown tall, with high cheekbones, and so thin I could count every notch along his spine. His
twisting body kept him busy corralling the tics that jerked him around and sometimes burst out of his throat without warning. Once, during a National Theatre matinee of Cats, his tics
nearly got us tossed out of our third-row seats. The usher said David was distracting the cats.
Even with the difficulty in conveying his thoughts, David made it clear he wanted to be included in the mainstream activities at his public high school and not just the special education program. But teenagers have their own hierarchy, and even the most accepting ones play by their peers' social rules. The mascot syndrome revealed itself in well- intentioned pats and theatrical hugs from passing acquaintances in the halls, but the phone never rang for him at home. In 2005, he would turn eighteen. There had never been any hope of college or SAT tests. What would happen after high school?
The school psychologist recommended a relatively new approach: an expensive two- year basic skills program. The downside was its faraway location in Fort Lauderdale , Florida .
However, it had a residential component geared toward independent living and targeting task completion, money management, and social skills for developmentally disabled young adults. So, after two decades of navigating our county' s murky special education system and investigating expensive drug therapy and psychiatric care, in 2006 my husband, Bruce, and I enrolled David in the program, adjacent to a sprawling community college campus in south Florida.
David was all for it. "This is my college right, Mom?" he asked.
It was as close as it would ever get. David has always operated under a different reality, his functioning compromised by both his cognitive limitations and his fine motor weaknesses. Standing in line with me at our neighborhood grocery store where he had worked for a brief time as a courtesy clerk, he jerked his head like a pogo stick and proudly told the cashier that he was going off to college in Florida . This was the same woman who had him fired for staring off into the distance and not taking care of a cleanup in the aisles.
"Really," she said, rolling her eyes. Then she handed me my change.
In the morning Bruce comes into the kitchen, sniffing and circling me like an old dog. He picks me up and, hip joints protesting, I wrap my legs around his waist. "Kiss me like you mean it," he says, and I peck him on his neck, his jaw, then land a wet one on his mouth. At that moment, an unshaven and blurry-eyed David pads in wearing a T-shirt, shorts, and one sock; he opens the fridge and stares in. Bruce drops me onto my feet. "Oh-kaay, then," he
says in a tight voice. "Coffee?"
What kind of middle- aged parents don't look forward to the time their adult children are able to live on their own? With David's two older brothers, Max and Eric, grown and out of the house, the prospect of becoming real empty nesters gleamed in the near future for Bruce and me. Still, I struggled with David's risky move into an apartment a thousand miles from home. After decades of being my intellectually disabled son's advocate, how could I just shut off my dependency on his dependency on me?
That was not how my husband saw it. "I just want some time alone together," he said, his eyes lighting up, "before we get old and floppy."
So Bruce began what was to be a summer of early preparation. He doled out instructions to David on how to open canned goods, boil water for pasta, shave himself, cut his toenails, do his laundry, and send an e-mail. It was hard work for David, but for Bruce, who is not known for his patience, it was excruciating. If David got bored, he would just walk away from the boiling water. If he got frustrated, he would drop the razor mid-shave, leaving a ring of white cream around his jaw, and go chase the cat.
"Like pushing wet cotton," Bruce said, but he kept David at it. Still, sometimes Bruce's rat-a-tat style and multistep directions would backfire. Like the lesson on sandwich making.
"With this skill, David, pretty soon, you can get a job making sandwiches in a deli. But," Bruce would warn, "you have to wash your hands first." Smiling now. Upbeat. Then, "No. Not like that. You have to use soap. No. You have to get in there and really scrub. No. Not like that. Come on, David, really scrub!"
Pushing this boy beyond his limits resulted in crumbs everywhere, a huge glob of mayonnaise on the top of David' s shoe, no trace of a sandwich, and Bruce shouting, "Finish the job! You wanna live here with Mom and me forever?" Which was my cue to walk in and growl, "Leave him alone! You're giving him too many directions at once!" And while Bruce and I faced off, David opened and closed his fists, as if he could shut us both up with the fragile strength of his hands. Then he drifted off into another room to play with the cat. Lesson over.
Still, when August came around and it was time for David to make the move to Florida , Bruce pronounced David ready. Ready for the chance to succeed or fail on his own. "He wants out," Bruce assured me. "He wants his own place, his own life. Let him go. What could happen?"
Tugging a U-Haul trailer on the long drive from northern Virginia , we crossed into Florida . On a road trip, you can' t ask for a better traveling companion than David if being on the lookout for police cars is your thing. "Look quick, MomHomeland Security vehicle," "K-9 officer coming up from behind," and "Duval County Sheriff's car!" David has always liked cops because he believes they' re the good guys, and he loves cars because they' re fast.
Well, honey, welcome to Florida . South Florida drivers take off from red lights like they' re shot out of a cannon, catching pedestrians halfway across the intersection, then saluting them with the finger for making them wait.
This is where we had chosen to leave our son.
At the orientation, I looked around the room at an exhausted group of parents and recognized in all of us the effects of decades of steady advocacy: the fatigue, the frustration, and the anxiety attached to avoiding a missed step for your special needs adult child. None of the couples seemed to be touching; in fact, we looked like a room full of shock victims. There would be no trophies here for our kids, no cheery crossing of the finish line accompanied by a Best Buddy and a flashbulb. Instead, the director insisted now was the time to take off the training wheels: "Let the kids feel empowered by their new living situation. Allow them to make mistakes because they will and then let them become the problem solver."
David and about one hundred students would now be scattered throughout a large public apartment complex, where they would microwave their own meals and be expected to make it to their vocational training classes on time every day. Adult resident advisers lived within the complex, but this was not a 24/ 7 managed system. There would be no bed checks here. We bought David his fi rst cell phone and, for weeks prior to the move, the three of us recited those digits along with his Social Security number out loud throughout the day.
David' s first e-mail home read: hey i was just wondering how I can get hot water for my oatmeal if i eat it. Because the sink water dosent work.
"At least he figured out the Internet," Bruce said.
He rarely called home, so we made a deal that we would phone him every other night around dinnertime, just to check in. Those calls never lasted longer than a minute: he was "fine," his classes were "fine," the nice roommate he had failed to bond with was "fine," and all David ever asked was, "How's the cat?" Our real info came from calls we initiated to the program' s counselors and therapists. It seemed he had found his way to his classes, but he was living off boxed cereal. The vocational counselor set him up with an unpaid afternoon job in the deli section of the grocery store near his apartment. That guaranteed him at least one hoagie sandwich a day.
During weekends at the independent living program, the students were left mostly on their own. Drawing on a happy childhood memory of a kind Pentagon Police officer who gave
him a few rides in his cruiser, David had gotten into a routine of dropping by the nearby Broward County police station to take cell phone photos of the parked squad cars. It wasn't too long before he was escorted off the property for peering too closely.
So he returned to his apartment, got on the Internet, and discovered websites of police cars for virtually every city in Florida . He' d print out the photos on Monday mornings at his school and bring them back to his bedroom to stick on his wall. When Halloween rolled around, he decided to dress up as a cop. He walked seven blocks to a uniform warehouse and bought himself a black POLICE T-shirt and a riot helmet with a face mask. When the big night came he set out to patrol his apartment complex grounds, cautioning the trick-or-treaters to "Be careful!" and to "Watch out for cars!" The sight of a tall, thin fellow in blue jeans and a riot helmet apparently spooked several parents. Soon enough, management was called in to usher David back inside his apartment with a no-nonsense warning about
impersonating an officer.
With David in Florida , Bruce and I were suddenly liberated. Gone was David' s habit of unclasping our fingers to separate us anytime he saw us holding hands in public. Absent that tension, a simple, quiet rhythm crept back into our relationship. It felt solid, familiar, and promising. Coming home from our jobs to an orderly house, dinner became a beautiful event for us. Bruce, the better cook, revived his favorite recipes, stopping nightly at the market to shop for fresh produce. I'd hop up on the cool granite counter, sip a glass of wine, and toss the salad while we talked about our day. Sometimes, after dinner, we would dance. It began in the kitchen and, even on cold nights in coats and gloves, we' d open the doors and slow- dance ourselves outside under the trees.
For the first time in twenty-five years, we didn't have to manage someone else' s life hour by hour. Somehow, my husband's clear- eyed approach had unchained me from the tyranny of being the good parent. I did not feel guilty, but the new freedom struck me as flirting with danger, like driving down a dark country road with the headlights off. Two days in a row might pass between phone calls from David. Maybe this was the most we could expect from the commitment we'd made to his new life. For the first time in two decades we had time to kill.
On a lazy Saturday in April, one that looked like a hard rain coming, Bruce and I picked our favorite things to do together. We spent the morning wandering around Eastern Market, a sprawling open-air marketplace in our old Capitol Hill neighborhood. The air there is scented with patchouli, fresh flowers, and cut-to-taste cucumbers. Inside the market's red- brick center, barbecued chickens turn on a spit and Jack, a dairyman in a white jacket, tempts customers with slivers of cheddar from a three-foot-wide cheese wheel. We bought bosomy green peppers and a clump of fresh basil. We haggled over a quirky painting of the market with Fred, a tattooed artist. Fred' s painting captured the feel of the place with its eclectic mix of people, flowers, and food. It would be perfect for my kitchen and I ended up taking it home.
We left the market and followed the Georgetown trolley tracks toward the Book Hill library. We climbed a hundred steps to the flower garden and sat under my umbrella in the misty drizzle. Suddenly the skies opened up, drilling us with fat bullets of rain. We raced around to the front of the 180-year-old library and entered through heavy wooden doors.
The library smelled the way libraries used to smell, some perfect mixture of tree pulp and cool anticipation. We found the fiction section and played an old game: Walk down any aisle, grab an armful of books, and meet at the window seat. There we opened to page one of each book and, taking turns, read the first few sentences out loud. That was the game: Rate the book by its opening lines hook or no hook? Today's hands-down favorite was N. Scott Momaday's The Way to Rainy Mountain: "A single knoll rises out of the plain in Oklahoma , north and west of the Wichita Range . . . . The hardest weather in the world is there."
I looked out the window across the damp lawn and saw the rain had slowed. Our day's hardest weather had passed and it was time to move on.
Monday, as I was hanging up the marketplace painting in my kitchen, I heard the news. Over the weekend, closed for business and without a single witness, both the marketplace and on the opposite side of town the library had caught fire and burned.
Electrical fires had resulted from ancient wiring, and no one was to blame in either case. Charred books soaked to the spine were now strewn across Book Hill's trampled garden. There was nothing left of Jack the dairyman's cheese wheel at Eastern Market. It was good to have the tattooed artist' s painting to hold in my hands.
Now I looked around my kitchen at the family photographs I'd selected over the years for hanging some good memories, some bad. Over there, my three little boys stand at attention in sailor caps. Beside, that in a Popsicle frame, David, the youngest, sleeps sprawled out on the kitchen floor, his head on the belly of a good dog. In another, my middle boy, Eric, grins, graduation cap askew, a cigar stuck in his teeth. And in the corner, looking into the lens with the cold and condemning eyes of an inaccessible young man, my firstborn, Max, shovels snow from our stoop.
Those three young faces have changed and scattered in new directions, the years having vanished behind them, with Max working his way through law school now and Eric studying music in Boston . It was fine to have their earlier likenesses there to hold on to that morning and to remember all of it without keeping score, because the hardest weather has passed, and it was time to move on.
The phone call came in to our home on a late spring afternoon, just before nightfall. It was nine months into David's program stay. I hopped off the treadmill and leaned against the basement wall, the one I'd helped the boys' paint with their signature red, black, and purple handprints in 1995. I remember joking that we'd always have their fingerprints handy if they didn't show up for dinner some night.
"Mom." David sounded excited. "Guess where I am?"
"Don' t know, sweetie. Where?"
"The Everglades ."
My throat closed up tight as David explained that a man named "Nelson from the Internet" was driving him into the Everglades . They'd met up at the drugstore.
"Put Nelson on the phone, David."
There was some background rumbling before David came back on the line. "He says he doesn't speak English."
"David. Get out of the car. Now."
"I'm on the highway, Mom."
"Nelson!" I roared through the phone to this stranger a thousand miles away. "Bring my son back this minute. I' m calling the police now!"
"Okay, okay, okay," said the voice in the background. I kept David on the line: "What does the big green road sign say now? What color is Nelson's car?" I took notes while Bruce called in details to the Broward County police. There was an employee named Nelson at the drugstore near David's apartment and the police ran a security check on him. Nothing turned up. No laws had been broken and, after all, David was legally an adult. The police told us there was nothing to do but wait. Forty- five agonizing minutes later keeping David on the line I heard a car door open and close"Good-bye"and a single set of footsteps slapping up the stairs. I counted them. A key turned in a door and David spoke into the phone, "I'm home, Mom."
To him, it was just another adventure. For us, it was more missing pieces to the forever puzzling life of our son.
Much of Florida utterly delighted David. Eight-inch Jesus lizards with a predilection for running on water scampered about on their hind legs, arms open wide. Green parrots whistled at him from the tops of palm trees. David has always loved birds, and those crazy parrots really cracked him up. The months passed quickly, but the highlight of his two years in Florida came toward the end after he scored a volunteer job at the Abandoned Pet Rescue shelter in a run- down strip mall off Ninth Avenue . There, a loudmouthed "guard parrot" named Bueno screeched at visitors like a club bouncer. Six- toed kittens leapt onto aluminum bookshelves stacked with cat food and kitty litter. Feral felines the size of bobcats slept in open desk drawers. Thirty to forty caged dogs barked in wild desperation whenever David opened the doors to clean their quarters. His job was feeder and scoop-up man and, along with his grooming chores, he loved the work. He stayed focused and finished the jobs he was given, gently brushing the cats in his free time. He did so well, one day he called home with big news.
"The shelter lady offered me a job. She wants to pay me, Mom."
The school confirmed it and our hopes skyrocketed. I called his big brothers and squealed, "David has a job!" For two weeks we dreamed of him on his own: a steady income, the bus route he'd need to master, the prospect of his own set of friends, how often we' d get down there to visit . . . Bruce called the county vocational training counselor to nail down the salary schedule so that we could begin to make a budget plan, but received only vague promises of a callback. When the call finally came, it was dispiriting:
"Somebody jumped the gun here," said the counselor. "The shelter would hire David if they had the extra money. But there is no extra money. And there is no job."
And so, after two years of living on his own and with no prospects for another job, the adventure had come to an end. And now David was headed home to start over.
It took a few weeks for us all to get used to each other, but David was back home, and the cat was sleeping in the bend of his knee again. The first thing we did was to put his name on the county's group housing list for people with intellectual disabilities, gamely landing at the end of the line with a three-year waiting period. David was twenty-one now, had grown another inch taller, and needed to be reminded to shave every day. However, I sensed a welcome new level of curiosity in him about his future. Lately, instead of surfing the Internet for photos of police cars, he'd been searching for job openings at local animal shelters.
He and I spent his first few weeks home reversing the avalanche of paperwork that involves updating Supplemental Security Income (SSI), Medicaid, and the Department of Rehabilitation information whenever a recipient changes his address.
We stood on line again at the crowded SSI office to push his benefits as high as legally possible. During the long wait, I couldn't help but notice the silent young woman in a wheelchair in front of us. Her legs were cut off at the knees, and her face was disfigured. What stuck out in my mind was that she appeared to be all alone.
Four hours and a lost day's work later, our mound of paperwork was completed. Stepping out of the SSI office into the sunshine, David let loose a day's worth of pent-up tics by setting his feet shoulder width apart and swinging his imaginary baseball bat over and over again. Just happy to be out in the fresh air and free to tic away, free of all the social workers talking over his head to his mother about what "he" planned to do with the rest of his life.
On the ride home, the haunting image of the legless woman returned to me. I looked over at David and said, "Dave, do you realize what a lucky guy you are to have someone love you enough to go through what we just did today?"
"Yeah," he said, pausing a beat in his traffic watching. "Who?"
With David' s paperwork tackled, it was time to continue the Metro lessons. The hope was still that someday the subway would transport him to a job, an apartment, and even a social life all his own. Of course, David had ridden the Metro since childhood, staring out the window into the darkness on city trips to the zoo, my fingers circling his bony wrist like a handcuff. Things were different now: starting over as an adult, it was all about the journey, but not in the bromidic Hallmark sense. We were actively going nowhere, working out how to get there and back via the city's underground tunnels. On a good day, if all went as planned, we'd stay down here in this cave studying the routes, calculating the fares. We'd never come up for fresh air, never see daylight, never hear a car honk; we just hoped to make the loop out and back again without a glitch, imprinting the pattern in David's memory. The first time on our mission, I told David, "Watch carefully." I bought the farecards and helped him feed them into the turnstile slot, cupping his fingers as he bent the ticket every which way. I traced our route on the wall map, and he followed me down onto the train's platform. There we stood with our toes on the yellow line and peered over the edge at the tracks. We pressed to the side while riders got off, then he followed me onto the train. Once inside, he sat staring
out the window in a daze, just as he' d done when he was five. We were moving along at a good pace, but something was wrong: David looked like a puppet set aside between shows,
dull and lifeless. It dawned on me that this wasn't liberating for him, and it wasn't educational; this was following. David needed to be the one holding the strings.
The next morning found us back on the train, studying the maps of the city. Maps are everywhere you look inside the Metro, and David loves maps. Especially ones that tell him: You Are Here.
It's actually quite hard to get lost on the Metro, but somehow I had done it again. I didn't realize it until we climbed out of the underground to surface in the morning bustle and stir of Judiciary Square .
"I thought you'd like to see what' s aboveground here, David." As I spoke, he stared at my mouth, not my eyes, most likely missing the facial cues that might alert him to the snow job I was giving him. But with David, nothing is ever exactly what it seems.
"You got us lost again, didn't you, Mom."
We turned around and headed back down into the station. At the fare gate, David inserted his Metro card and passed easily through the turnstile. I stuck my card in, too, but it spit right out with a little digital alert that said Add fare.
David and I were now separated by the turnstile in the pushiness of rush hour.
"Dave, stay right where you are," I said. "I've got to put more money on my farecard. Back in a sec."
The line at the farecard machine stood six deep. I fumbled around in my bag for my wallet. A dollar bill and four quarters. Yeah, that should do it. I looked back over my shoulder
to gesture to David to be patient and he was gone. Vanished. I raced over to the turnstile and pushed against it, straining to pick him out of the crowd.
The stationmaster appeared at my side. "Ma' am, you can't get in without a farecard."
"But my kid' s gone ahead of me. You gotta let me in."
"How old is he?" asked the guard, a middle- aged black guy with bushy gray eyebrows.
"Twenty- one, but . . ."
His concern transformed into a scoff. "Ma'am," he said, hiking up his pants, "you can't get in without a farecard."
"My boy doesn't know where he' s going. I've got to get to him."
The stationmaster shook his head.
"Sir. My son is autistic."
The man looked at me with a blank expression.
"He' s, he' s . . ." Ah, damn. How do you explain the cognitive buckshot of autism in the time it takes a child to disappear? With each second stealing David further away, I had no choice. I resorted to the shortcut word that everybody knows. It was the wrong word, a throwaway word, but it meant something and was the only word that could get me what I needed right now. And that was David. With my conscience shrieking, Wrong! Wrong! Wrong! I looked into the stationmaster's eyes and said, "My son is retarded. You have to let me go find him."
"Tell me his name," said the guard. "I'll make an announcement over the PA system."
"See, that' s just it. He'd never pay attention to a stranger' s voice only my voice. Please . . ."
The guard took my elbow and led me to his kiosk. He reached through a window, pressed a button, and withdrew a microphone. "Make it short," he said, holding the mic up to my face. "Tell him to return to the fare gate."
I leaned toward the mic and an enormous voice I didn' t recognize jumped out of my throat. "David, it' s Mom," I said. "Come back to the fare gate."
The words quivered and, still holding the mic to my mouth, the stationmaster said, "One more time."
"Come back, David. Come back to where you started."
This time the words flew over the crowded train platforms and ricocheted off the steel rails. Disregarded by most commuters, they were plain enough to grab one young man' s attention, wherever he' d gotten to.
And then he was there. Undamaged and unconcerned. "Hey, Mom" was all he had to say. There was nothing for me to do but to shake it off and get back on the train.
The stationmaster approached us and handed me something: a pocket map of the Metro system. "Just in case your mother gets lost again," he said to David. Then he keyed open the fare gate and, with the gentlest shoulder pat, eased me through.
A Conversation with Glen Finland
What do you hope readers will take away from your book?
I'd like to think I have pulled a few readers into a different world and given them a connection they'll want to keep to a better understanding of autism. For example, one reader told me she looks less judgmentally at the people around her on the Metro these days because of David's story. Another told me he looks around for David every time he heads to the ball park. It would be nice to think that the image of David as a regular guy might linger awhile. Maybe then we could start to change the conversation about autism, to move away from causes and cures and blessings and blame, because the truth is, the real lives of autistic young adults are very nuanced, just like yours and mine. And these kids are growing up with real-world issues like oursjobs and housing. We need to stop seeing them as targets for pity or therapy and make room for a different kind of employee heading into the workforce. To foster independence for this growing population, we need to commit to a society in which they have access to enough job training to succeed on their own, with the legal rights they deserve.
While writing this book you had to take a long, hard look at each family member's role in David's life. What surprised you most?
The book turned out to be not a story about autism, but an entire family's story. A family who gets through every day by winging it. It is also a love story about a mother and father as seen through the prism of their child's autism. For the first time in our long marriage, I really tried to look at life through my husband Bruce's eyes. What I saw there was not how but why fathers of children with hidden disabilities often struggle with denial. After two sons, the rules of the game as Bruce knew them completely changed when David was born. My husband is the first to admit he's not a very patient man, but he taught himself how to be another kind of father. No small task, because the job has no endpoint. It takes an enormous amount of maturity to parent a special-needs child, yet rather than try to change David, Bruce came up with ways to support a different kind of a boy. Along the way he and I made a mountain of mistakes, but Bruce was absolutely determined to stick it out. "I'm not giving up on him," he told me a thousand times, "and neither are you."
The word "retarded" is unacceptable in describing the intellectually disabled. And many autism advocates say that using the word as a descriptive adjective is demeaning and politically incorrect, preferring, for example, the phrase "a son with autism" to "an autistic son." Where do you stand on this?
I think the word police are overdoing it here. "Autistic" isn't the latest model of the mean-spirited R-word, which was used for decades to diminish people with intellectual disabilities. Instead, it's sort of a diagnostic catch-all, and I'm not willing to turn it into a weapon to be used against autistic people when we're trying to get across to the public all kinds of autism awareness. Using the word "autistic" freely should help break down the single Rainman stereotype that people have been stuck on. If we embrace the wordjust bust it wide open and use it as a learning toolthis encourages people to start paying attention to the wide variety of faces under the big umbrella of the autism spectrum. Yes, David is autistic. He's also tall, dark, and handsome. He's a distance runner who drives a car to work every day. The way I see it, if people know he is autistic and they also know three or four other folks who fit in somewhere else along the spectrum, then they can see for themselves that the word covers a wide variety of individuals.
How do you answer the question of whether writing this book might somehow exploit your son?
It's a tough question, and a fair one, and I have decided it says more about the person asking it than about my choice to tell David's story. The short answer is: Outsiders see, Insiders know. As a mother of a young adult on the autism spectrum, I feel a keen responsibility to tell this story to help build community for families like mine who are in it for life. I don't get too prescriptive: this is only one family's story. Still, I know the isolation that can surround those living with autism, and our silence only exacerbates the problems we struggle with privately 24/7, decade after decade. There's this sense of zigging and zagging between failure and success. Yet there's no room for whining in autism. Someone has to be the adult and figure out another individual's whole life. Since my husband and I are not going to live forever, we have to figure out who's going to be there for our son when we're gone. We have to figure out what David's life will be like way down the road. It would be in everyone's best interests to see more stories about autistic adults living meaningful lives.
As they go forward, one of the largest obstacles our loved ones will face is apathy. Educating the general public about autism awareness is important, but empathy is something that can't be shoved down an Outsider's throat. It needs to come from sources other than federally mandated programs. So we Insiders need to tell our real-life stories about the everyday ups and downs of living with autism in all its rich and strange variationsunreachable toddlers, friendless teens, guilt-ridden siblings, exhausted parents, stumped teachers, well-meaning doctors, confused employers, kind strangers. All of these stories will provide a more tender way to understand what it really means to be a different kind of human. And, after all, who can resist a good story?
What atypical insight might you offer a parent who is desperate for some respite when mired in the everyday world of loving a child with autism?
You mean apart from throwing eggs at the back of your house? Seriously, it is a daunting task, no matter how you decide to make it work, and the stress will fray the edges of the strongest marriages. Studies show that marriages of couples with autistic kids up to about age eight hold together pretty well. It's when the kids become older teens and college age that parents start to question their commitment to each other. So you have to figure out how to salt away something for yourself, to make your own life rich and whole. Here's one thing my husband and I did: Many years ago we made a pact. Once a year, I would take a separate vacation, by myself. I wouldn't need to ask permission from anyone. I would simply step outside my box as the mother of an autistic boy and two older sons and go be anonymous me somewhere. "Just go," my husband always said. So one year I went fishing. Another year, it was a weeklong bike tour. And there was the night I spent in a hotel five minutes from our house just so I could read and drink coffee at breakfast uninterrupted. Selfish, you say? Yes. Completely and without reservation. And it's probably the best thing I ever did for my family. Just knowing I could open the window onto my old self and stillstill!want to return to my quirky family life helped keep everything together.
Who have you discovered lately?
The sparse and cultured prose in Julian Barnes's latest, The Sense of an Ending, has stuck with me. His gift of a single line of dialogue to nail down a character's viewpoint is remarkable. Michael Ondaatje has always been one of my favorite writers of both poetry and prose. In 2011 he grabbed me again with The Cat's Table, a novel about a boy's journey into manhood. Kent Haruf's take on isolation in Plainsong resonated deeply with me, and I will pick up anything the brilliant Geoff Dyer writes. Recently a friend handed me an old Martha Grimes novel, and the humor in the spot-on gestures she used to push the dialogue forward knocked me out. But what I love most of all is a book of great short stories. In 2009 it was Elizabeth Strout's novel-in-stories Olive Kitteridge. And I gobbled up Anthony Doerr's new Memory Wall after reading The Shell Collector[a 2002 Discover Great New Writers selection. -Ed.] a while ago. The truth is, I'm a serious rereader and I tend to fall back on the stories of Flannery O'Connor, Grace Paley, and Andre Dubus. And no matter how many times I read Tim O'Brien's The Things They Carried, I know I will discover something new there, because, as he says, stories have the power to heal.