Parents didn’t seem to mind if their children were covered head to toe in paint once they saw the gigantic, elaborately constructed castle we’d spent the day building out of refrigerator boxes. They looked right past the messy clothes when their children, beaming with pride, took them on a tour of the brightly colored castle, which consisted of several separate rooms.
Even more exciting, I was pregnant again, and Michael was thrilled. Our vision of a house filled to the brim with kids was coming true.
Although I didn’t realize it at the time, this bubble of restored domestic bliss was just the eye of the storm. The gravity of what was happening to Jake—this thing we couldn’t name or understand—hit me some weeks later, while the three of us were attending another child’s birthday party.
Very few things thrill young children like interacting with a character they know and love from books or TV, and our neighbor’s Clifford the Big Red Dog birthday party was no exception. When the big red dog came in, the toddlers in the room erupted into gleeful hysteria. Michael joked that it was like happening upon Michael Jackson at the mall.
Not one kid in that room could take his or her eyes off the giant red dog, except my son, who remained glued to the alphabet book he’d brought with him. We tried to engage him—“Look, Jakey, it’s Clifford!”—but Jake wouldn’t even look up. In a room filled with squealing children, festooned from floor to ceiling with balloons and streamers, with gigantic bowls of candy everywhere—not to mention the six-foot man in the furry red dog suit—Jake was lost in the letter K.
My anxiety level was rising. “Put him up on your shoulders so he can see,” I urged Michael, who did, bouncing and singing along with Clifford’s birthday song. But Jake simply opened his alphabet book again and rested it on top of Michael’s head. In a last-ditch attempt to get Jake involved, Michael gently opened Jake’s fingers to give him a balloon. Jake looked down at the red ribbon in his hand, then up at the shiny, helium-filled foil balloon, and then back down at his book. Slowly, he opened his fingers, releasing the ribbon. I stood there, watching my silent, serious boy, lost in his alphabet, while the balloon drifted to the ceiling, and I knew in that instant my mother was right: Something was wrong with my son.
First Steps continued to send therapists to work with Jake in our home. I was still going through the motions, of course, but after that day at the birthday party, my sense of optimism had deflated like the balloon we’d brought home with us. I no longer felt confident that therapy would be enough to reverse whatever was happening to Jake. He seemed to be withdrawing even more, and nothing could stop his downward spiral.
An hour with his therapist might elicit a word or a sound; sometimes he’d randomly echo song lyrics or parrot a phrase one of us had said. But real communication with Jake—anything remotely resembling a conversation, even something as simple as “Hi” or a request for a cookie—was gone.
Looking back, I realize that Jake was exhibiting the textbook signs of autism: the gradual change in speech, the inability to make eye contact or to engage with us or his therapists. But this was 1999, before the PBS specials, before anyone knew we were dealing with an epidemic. In 1999, autism meant one thing to most laypeople, and that was Rain Man, and I saw no similarities between our baby boy and the character Dustin Hoffman played in that movie.
Although I still did not know what to name it, I had begun to accept in my heart the seriousness of what was unfolding. But it was essential to me to maintain the traditions that made our family life uniquely ours.
One of those traditions, and perhaps the most important one to me, was Sunday dinner at my grandparents’ house. My mother’s job as a corporate accountant meant long hours and frequent trips to New York, so growing up, we spent a great deal of time with my grandparents, who lived directly across the street. An irrepressible, wonderfully eccentric inventor, my grandfather loved more than anything to play with us. He turned life for everyone around him into an endless, elaborate series of adventures.
Grandpa John Henry was an incredible man, not only a machinist, an engineer, and an inventor but also an expert craftsman and carpenter. After his stint in the U.S. Navy during World War II, he had come back to his hometown of Mansfield, Ohio, to work as a machinist on the floor of Westinghouse’s tool and die plant, as his father had before him. In addition to his day job, Grandpa John earned a contractor’s license and began building commercial and residential buildings. He was written up in the local newspapers as the epitome of America’s can-do spirit, living proof of the rags-to-riches optimism and enterprise that had made our country great. And that was before he had performed his best trick.
When Grandpa began his job at Westinghouse, he couldn’t help noticing inefficiencies in the process known as annealing. To drill a hole in steel, workers had to heat the metal to soften it to the point where a tool could pierce it. Often as not, once the steel had cooled, the precisely drilled hole would lose its shape, and the whole process would have to be repeated. This was true for every steel manufacturer in the world, and knowing Grandpa John, it must have driven him nuts.
We never saw him without a little notebook in his pocket, each one filled with drawings and ideas and projects he was working on. I don’t know how long it took him or how many notebooks he worked his way through, but Grandpa John and a partner eventually solved the puzzle by inventing a new set of tools and a new process that allowed workers to drill hard steel, which revolutionized steel manufacturing.
The Ford Motor Company took notice of Grandpa John’s invention and was the first to purchase nonexclusive rights to it from the team. They subsequently sold it to other major companies as well, and there isn’t a car on the road today or a toaster in your kitchen that didn’t benefit from my grandfather’s innovation.
Ford changed my grandfather’s life. Grandpa John moved directly from the machine shop in Mansfield to Ford’s famous Glass House in Dearborn, Michigan. Even when he became an executive, the machine shop remained Grandpa’s favorite place to be. Eventually, Ford asked if he’d be willing to move to Indianapolis to head up the tool and die division of its largest manufacturing plant, and that’s how he (and later we) came to live in Indianapolis.
Grandpa’s invention and his position at Ford, which he held until he was in his seventies, made him a wealthy man. But he never bought a fancy house or traveled the world. Grandpa lived in the same single-story brick house on the east side of Indianapolis to which he and my grandmother moved from Dearborn for the rest of his life, and my grandmother lives there to this day.
The money he earned did afford my grandfather the freedom to take a five-year leave of absence to help my parents take care of Stephanie and me when the need arose, and every day Grandpa John delivered us into a world of pure enchantment. He was the only adult we knew whose inventiveness and energy matched our own. With him at our side, we spun all the wonders of our imagination into playthings as concrete as the ground beneath our feet.
Grandpa John could truly build anything. At the same time that he was helping to raise us, he was also working on another project close to his heart. The one extravagance he’d allowed himself was to purchase a nearby plot of land in order to build a sanctuary for the New Amish community in Indiana. The church was very much a hands-on project for him. Grandpa John had been raised in a culture of barn raisings and carpentry, and he’d earned his contractor’s license, so it was completely in character when he insisted on building every pew in the new church himself. When the crew responsible for sanding and varnishing the timber beams to support the roof didn’t perform up to his standards, he redid them himself with the help of his family—even enlisting Stephanie and me, the very youngest members. He was at the construction site practically every day, more often than not with us in tow. We’d make little statues out of dampened sawdust and discarded screws while he answered a question or consulted on the plans, and then we’d head out with him onto the lake on the church’s property, fishing for croppies and bluegills
in a boat my grandfather had built with his own hands.
When we weren’t at the church site, we were by his side in the superb mess of his garage workshop. Other children may have fantasized about Santa’s workshop, but I grew up in the real thing. Piles of fragrant wood rested on strong brackets in the garage, waiting for my grandfather to call them into service to make a cradle for a new baby in the family, or for one of our dolls. Hammers and clamps and other small tools, handles burnished from years of good use, hung haphazardly from nails on the wall. Handmade oak drawers with shiny brass pulls opened to reveal thousands of screws and washers and bolts of every size and description, while handmade cabinets held lacquer and paint, brushes and honing stones, chisels and anything else he might need to turn imagination into reality.
In the evenings, tired after our long, busy days with Grandpa, Stephanie and I slid into the soothing routines of my grandmother Edie’s immaculate kitchen. A little stern where Grandpa John was free-spirited, Grandma enlisted our help in late summer to can corn and berries and to make pickles. Later, we’d put up great vats of spiced applesauce from the Yellow Transparent and Lodi apples we picked in the fall. On winter nights, we made peanut brittle, caramel corn, and, when the temperature fell below freezing, clothesline taffy.
After dinner, we spent the final hour of the day in my grandparents’ front room, where we might feast on cheddar cheese and apples or one of the amazing German baked goods in Grandma Edie’s repertoire. Stephanie and I particularly loved the giant puff pastry cookies sprinkled with sugar and cinnamon that we called knee patches. In the summer, Grandma’s homemade vanilla ice cream was loaded with just-picked strawberries, and in the winter she’d spoon the peaches she’d canned over our bowls.
In this room, my grandmother taught Stephanie and me how to quilt, and how to embroider, too, patiently untangling the jewel-colored threads when they snarled. When the whole family sat down for dinner on Sunday nights, we did so at a table that my grandfather had built himself, then sanded and polished to a mirror finish. The table was set with linen place mats and napkins that the women in our family had embroidered ourselves. There was always care and quality at that table, and there was love.
Given how central the relationship with my grandparents was to me, it was only natural that I would want Jake to grow up close to them, too. So every week, our new little family joined them for Sunday dinner, just as I always had when I was growing up.
Michael loved going for Sunday dinner as much as I did. Before he met me, he’d never known how wonderful it felt to come out of the winter cold into a toasty house filled with the intoxicating smells of roasting meats and baking pies. He’d never given thanks at a table set with homemade beeswax candles or joked with relatives as everyone worked together to get the food on the table while it was still hot. I came to see that welcoming Mike into this domestic embrace was one of the greatest gifts I could give him.
Mike wasn’t the only one who enjoyed our Sunday outings. As picky as Jake was about what he ate, he’d wolf down a giant piece of my grandmother’s homemade apple pie—and another if we let him. He loved to play with the beautiful wooden toys that Grandpa John had made for his grandchildren when we were small. The marble run was Jake’s favorite, as it had been mine. And I was certain that when he got bigger, I’d see Grandpa John and him at the workbench in the garage, both bent over one of my grandfather’s notebooks.
One Sunday evening when Michael had been called in to work, Jake and I went alone to Sunday supper. Usually, my grandfather welcomed us at the door, but that night he didn’t. I assumed he was either finishing a project or cleaning up. My grandmother wouldn’t allow him anywhere near her table until he’d washed the machine grease and wood dust off his hands with gritty black soap and changed into one of the soft flannel shirts she always kept pressed and stacked neatly for him. But when he finally appeared at the head of the table to carve the roast, I was stunned to see that he was in a wheelchair.
Over the course of the previous year, he had suffered a series of small strokes and we’d seen him gradually lose ground. Even so, I was shocked that he was now too weak to stand. My heart caught in my throat, but the way he proudly showed off the engineering behind his wheelchair to my brother, Ben, helped me also to see that he was still very much himself.
There was a funny convergence that night. My grandfather’s occupational therapist had given him some soft putty to squeeze so that he could regain the strength in his affected hand. When he brought it out, Jake’s eyes widened, and he began, somewhat shockingly, to hum a little tune under his breath. “What’s that song he’s singing?” my grandmother asked me, bewildered. It was the only sound we’d heard out of Jake all night. I smiled and sang along with him: “Make a snake, make a snake”—the song that Mike and I always sang to encourage Jake to roll out the very same putty in the way his occupational therapist had instructed.
The levity, however, didn’t last. Later that night, as I was helping Jake into his car seat, my mother handed me a newspaper article describing what autism looks like in a very young child. As I read the article, my stomach dropped: Many of the behaviors on the checklist were all too familiar to me. On the drive home, I had to pull over because I was crying too hard to see the road.
Scattered Skills
Every parent has had a moment of inattention while shopping. You think, “Hmm, this dress is cute. I wonder if they have it in my size?” and by the time you turn back around, your child is nowhere in sight, having vanished into thin air. That feeling of mounting terror that claws at your throat as you wildly start calling his or her name—that moment is what it feels like to watch your child disappear into the dark well of autism. But instead of a few terrible seconds before that little face pops out from behind a rack of sweatpants, the moment of powerlessness and desperation can last for years, or a lifetime.
Michael was having none of it. He was still pushing back the encroaching darkness, fighting fiercely to hold on to our picture-perfect life. After all, this was his little buddy, his Jake, his boy. So when a therapist used the word “autism” in relation to Jake—the first health professional to do so—Michael fired her on the spot. We’re not proud of that now, but it’s a common reaction.
Over the next few weeks, however, it became clear to both of us that we were losing Jake. In October 2000, First Steps came to the house to conduct a formal evaluation.
The night before, I was such a wreck that Michael called my brother, Ben, to come and lend moral support. Ben is always hatching some wacky new plan, whether it’s turning the guest bedroom into a yoga studio or draping sheets of meat over every surface in his house to make homemade beef jerky. But even high-spirited, practical-joke-playing Ben was solemn on the day of Jake’s evaluation, and nobody on earth could have brought a smile to my face.
As we shook hands with the evaluating therapist, Stephanie Westcott, I was keenly aware that everything in our world was riding on the next few hours. This woman’s verdict would either leave us rejoicing or cast us out even further into the desert—and we’d seen enough to know exactly how bleak that landscape could be. My hands shook so badly that Michael had to press them hard between his own hands to get them to stop.
By midmorning, I felt physically ill. We didn’t need special training to see how badly the evaluation was going. Most of the time, Jake didn’t even respond when Stephanie spoke to him. He wouldn’t make eye contact with her. He wouldn’t point at the circle, put the star in the shape stacker, or put the rings on the tower. He wouldn’t sort objects by shape or by color, even though he spent a lot of time doing those types of activities on his own. He wouldn’t sing along with her for Itsy Bitsy Spider or show her with his fingers how the spider crawls up the spout.
When he recited the alphabet, my heart lifted. But Stephanie didn’t look as impressed as I’d hoped, not even when he recited it backward. At one point, when she tried to guide Jake to a new activity after playing with crayons on the floor, he cried
and refused, his whole body stiffening. By the time she had convinced him to move along to the next exercise, my blouse was soaked in sweat.
Then Stephanie asked Jake to do a wooden puzzle with her. I let out a breath I didn’t know I’d been holding, and Michael and I allowed ourselves to exchange a glance of relief. We both felt certain that he would do well on this one. Jake had loved to do puzzles since his pudgy baby hands were big enough to hold the pieces, and he was a whiz at them. The puzzle she was asking him to do was similar to some of the ones he had—easier, even—so we were confident that here, at least and at last, Jake would score well.
But just then, as Jake’s moment to shine finally arrived, he decided that he wanted to play with his alphabet magnets.
Jake was obsessed with the colorful plastic alphabet magnets we kept on the fridge. He had dozens of them and carried them everywhere he went. Hoping to avoid a possible distraction during the evaluation, we’d put his magnets away in a box on a bookshelf, thinking that out of sight would be out of mind. The tactic, unfortunately, backfired, and Jake’s single-minded focus was now squarely on getting those magnets off the shelf.
Jake would get up and make a beeline for the box, and Stephanie would gently but firmly lead him back to the table. The battle raged on as the minutes ticked by. I couldn’t bear to watch, staring instead at Michael’s hand clutched over my own, his knuckles a startling white. Finally, and after quite a bit of time, Jake agreed to stay seated, but his whole body was craning over the back of his chair toward the box of magnets. After even more coaxing, he finally did the puzzle—without looking at the puzzle itself or at Stephanie sitting across from him, instead still leaning over the back of his chair, his eyes trained on the box.
The Spark Page 3