But the biggest news had to do with Wesley. The aquatic therapy had continued to pay off, so that his stiff little body was a great deal more flexible. As a result, he could move more easily, and eventually, around his third birthday, he began to walk.
And then he galloped and jumped and sprinted and leaped and crashed. Once mobile, Wes didn’t just get out of bed in the morning; he bounded out of it like Tigger in Winnie-the-Pooh, usually taking a piece of furniture or one of his brothers out in the process. If I asked him to get me the Scotch tape from the kitchen, he’d turn into a race car to do it, squealing around corners with two wheels off the ground.
Suddenly, our whole house was an extreme-sports obstacle course. Wesley couldn’t pass a couch without bouncing on it, a bookshelf without climbing it, a staircase without hurtling down the last six steps. Wesley was never in a room by himself for more than ten seconds before you’d hear a crash. Our middle son was suddenly on the move, and Mike and I couldn’t do much more than laugh at his antics. We resigned ourselves to the inevitable cuts and scrapes and bruises (and the occasional emergency room trip). What else could we do? Wes had a lot of lost time to make up for, and nothing in the world was going to slow him down.
Jake was great, too. By the time kindergarten came to an end, it was clear to everyone that he’d been successfully mainstreamed. The school had been checking on him periodically, waiting for the inevitable disruption or tantrum, but it never came. The pride I felt on the last day of school was about more than Jake’s individual accomplishment, huge as it was. Maybe, just a little bit, we’d changed people’s minds about what it meant to be autistic.
Privately, though, I recognized that we still had some ground to cover. Conversation with Jake was one sticking point. When asked what happened at school that day, most kids say, “Nothing.” But I knew those kids would eventually talk to their parents. For instance, whenever Mike took Wesley along on an errand, such as filling up the car with gas, I’d hear about it for weeks—the kinds of cars they’d seen getting detailed, the crazy hair on the cashier, the lollipop she’d given him.
Not Jake. Every day, when Jake came home from first grade, he’d take my hand, and we’d go out to read license plates until dinner. If I asked him what his day had been like at school, he’d recite the schedule: circle time, then reading, then lunch. If Jake had been my only source of information, I wouldn’t have known the name of a single one of his classmates, let alone anything about them. He took “Just the facts, ma’am” to an absurd degree. He could tell me, for instance, that the class had come in seven minutes late from recess, but not that they’d been late because one of his classmates had gotten a nosebleed.
I felt a little sad that I didn’t have more access to his world, particularly when I saw how much shared ground other parents had with their children. One afternoon at the drugstore, I ran into a mom with a kid in Jake’s class, and she stopped for a minute to chat. “Wow, what about that squabble in the playground? I heard Elias’s father came in to talk to the principal about the way Jeremy pushes. Isn’t it cute the way Oliver and Madison hold hands all the time? It’s too bad her family is moving to Chicago next year.”
How on earth did she know this stuff? Had I missed a parent-teacher conference? Was there a newsletter?
“Oh, you know my Caitlin—she’s such a Chatty Cathy,” the woman said. She turned to Jake, who was sitting in the back of my cart, reading a book about cloud formations. “Caitlin tells me you spend a lot of time in the puzzle corner and that you always choose books about weather and rocks on Library Tuesday. Is that right?”
No answer from Jake, of course, and for once I didn’t have much more to say than my son. This random woman seemed to have more information about the whos, whats, and whys of Jake’s school days than I did. As I loaded Jake and our purchases into the backseat of the car, I felt a little defeated. Thankfully, it’s not my nature to stay that way for long. Someday, I knew, Jake would have a conversation with me.
Although school was going well, I was still coaching Jake in the mornings so he’d be able to deal with any anomalies in his day. I couldn’t prepare him for everything, so my focus shifted to giving him the tools he’d need to adapt on the spot.
In first grade, right around Halloween, Jake’s teacher filled a humongous jar with orange and black jelly beans and told the class that whoever guessed the correct number would get to take the jar home. Jake, of course, had been calculating the volume of cereal boxes since his infancy. The only detail he couldn’t be sure about was how much space the teacher had left at the very top of the jar, under the lid. But he was confident that he’d gotten within twenty jelly beans of the correct answer.
It didn’t work out. The announced number was lower—much lower—than Jake’s formulas had suggested, and the jar of jelly beans went home with a kid who gleefully crowed that he’d pulled a random number out of the air.
When Jake got home, he was beside himself. I couldn’t console him, even by promising him every jelly bean in the store. Of course, it wasn’t about the candy; it was about the math. I thought he was going to drive himself crazy over those jelly beans. He wouldn’t eat or do anything else that night except check and recheck the numbers, sure that there was a rational explanation for how he could have been so far off.
The next day, he found out there was a rational explanation. The teacher had put a giant wad of aluminum foil in the center of the jar. Maybe she didn’t want to spring for so many jelly beans, or she didn’t want to send so much candy home with one kid. Whatever the reason, she’d rigged the game so that Jake’s equations hadn’t worked—unintentionally, of course, because who on earth would suspect that a first grader was going to use an equation to figure the cubic volume of a guess-the-jelly-bean jar? But Jake was completely undone.
The jelly bean incident, as it came to be known in our house, was when I came up with an intervention that I’ve used ever since with my own kids and all the kids I’ve worked with. “I know you’re upset,” I told Jake, “but there’s a scale. When someone you love dies, that’s a ten on the scale. When something’s a ten, you are entitled to flip out. You’re actually entitled to do more than that. You can crawl into bed and stay there, and I’ll be right there holding the tissue box.
“But then there’s the other end of the scale, and that’s where you’ll find that jarful of jelly beans. It’s not someone breaking a bone or losing an arm; it’s a jar filled with candy we can buy at the drugstore. That’s a two, and you respond to a code two event with a code two reaction, not a code ten.”
I use this intervention to help kids, particularly autistic ones, get some perspective. “Someone crashes his car / Your shoes feel scratchy. Which one’s the ten?” I ask. “When it’s time to go code ten, by all means, go code ten. But you can’t waste code ten on the way the label in your shirt itches your neck.”
Sometimes Jake needed a little reminder to respond to a code two event with a code two reaction. But in general, having a rule-based check on his social behavior helped him respond appropriately. It was so effective that people began to ask me whether Jake had been cured of his autism. He hadn’t, of course, and he never will be. Jake’s autism is something he copes with every day. There’s always some event that has the potential to make him go “full Rain Man,” as we say in our family. But Michael and I keep trying to give him the tools he needs to make appropriate choices, and in general he does.
We went to Barnes & Noble most Saturday afternoons. Wes and Jake were allowed to choose two books a week, whatever they wanted (although I was still steering them toward the bargain section), and then we’d all get a snack at the café and look through what we’d bought. I don’t care how many books I’ve read, there’s always something special about opening a brand-new book and having a whole afternoon to get lost in it. It gave me real pleasure to share that feeling with my boys.
Jake, unsurprisingly, always went straight for the reference books. If it was filled with time
lines, maps, graphs, and charts, Jake wanted it. A history of great scientists was one favorite, and Timechart History of the World was another. But nothing trumped the college textbook on environmental science.
I came to understand that Jake memorized facts as a way of calming and comforting himself. Reading lists of facts had the same effect on him that watching a half-hour sitcom or flipping through a gossip or fashion magazine had on one of my friends. Just as my experience with my sister, Stephanie, had helped me see talents and gifts where other people saw deficits, observing my husband’s quirks helped me understand what soothed Jake.
Michael also memorizes trivia to relax. Ask him who starred in some obscure movie from the 1970s or who played first base for the Cardinals in 1983, and he’ll tell you without hesitating, and then he’ll update you on whatever that actor or first baseman has done since. When he worked for Target, they called him “the Mike.” During the summer he spent unloading freight, he learned every SKU number in the store. So later, if a price tag was missing, instead of price checking it at the register, other employees would get on the walkie-talkie and say, “Mike? Suave coconut shampoo?” To my tremendous annoyance, I have never seen him miss a question on Jeopardy! and I have flat-out refused to watch it with him ever again until he goes on the actual show and wins. So seeing Jake curled up with a list of exoplanets or asteroids didn’t seem as weird to me as it might to another parent.
Jake’s interests were wildly varied, too. He read every book about American history he could get his hands on. Jake’s hunger for information seemed limitless, and his memory, as far as we could tell, was inexhaustible. Jake could tell you that poor, obscure James Buchanan was the fifteenth president of the United States, as well as provide you with the dates he served, the date he was born, whom he married, and when he died. He knew what state Buchanan was from and what percentage of the electoral college vote he had received.
He couldn’t stay away from any textbook that had a test in it. (He’s still like that. I must be the only mother on earth who needs to console her child when an exam is canceled.) I remember the day he discovered the section in the bookstore for test preparation. ACT! PSAT! SAT! MCAT! GMAT! LSAT! Here were pages and pages of numbered problems, and lots of them were math! He looked at me reproachfully, as if I’d deliberately been withholding this wonderful treat. His favorite book in first grade was a GED preparation manual. He wasn’t interested at all in the language sections, so I can’t say for sure that he would have passed the test in its entirety, but by the end of that year, he regularly got perfect scores on the math tests.
Weirdly, people at school didn’t seem to notice all these crazy things Jake was doing. If they did, nobody said anything. At the beginning of first grade, the kids were given a big workbook of math problems, a full year’s worth of work. Jake filled in the entire book during the first two days of class. The teacher knew what he’d done, and she told him he could sit in the corner and read a book during class.
What he did instead was to create his own visual-based math language, which he still uses to tutor other kids. This language uses colors and shapes to represent numbers and combinations of them to represent equations. Imagine an abacus colliding with a kaleidoscope, and you’re close. He layers transparencies in different colors and shapes on top of a light box now, but back then he had thousands of pieces of construction paper, meticulously cut into shapes that could be laid on top of one another so that he could do complex calculations. But nobody, including Jake, ever mentioned the fact that he’d essentially skipped a grade in math to me or Michael.
Going through old papers, I found some of Jake’s work from those days. (I hadn’t remembered, but when other kids were drawing a square with a triangle on top to represent their houses, Jake was using his crayons to draw models of more efficient hydroelectric plants.) In one of those old boxes, I found Jake’s first-grade journal. The teacher had given them a weeklong assignment: What would you do if you were president?
One of Jake’s entries from that week reads, “If I were President, I would tell people to aband New Orleans. Also If I were president I would build New Orleans some where else. I would even tell an argetect to draw and build an amusement park. When he or she was done, I would go to the amusement park. I would have a fun time.”
At the time, I thought I’d never seen anything quite as adorable as the “he or she” in that sentence. A few pages later in that first-grade journal, there’s another entry: “If I were president, I would go to Florida and warn people from hurricanes.” We didn’t think anything of this either. It was hardly news to us that Jake was obsessed with climatology and climate change. His preoccupation with the weather is still a joke in our house. We always say that Jake won’t remember what he got for Christmas last year, but when he’s eighty, he’ll still remember how much snow there was on the ground. (He can’t remember the name of a single kid in his kindergarten class, but he can describe, in vivid detail, the torrential rainstorm that required him to take shelter in a stairwell while he was waiting for the bus on his very first day.)
Of course, what pops out at me now is that the journal is dated January 2005, seven months before Hurricane Katrina devastated the southern United States.
A Boy Cave
By second grade, Jake was humming right along in school. But I always saw his autism as a shadow in the background that had the potential to creep forward and snatch my child back if I let it. So, just as I would have gotten Jake tutoring help if he was falling behind in math or reading, I felt that it was up to me to make sure that he had friends. To do that, we needed a little help.
Now, I am into Halloween. I love it. Michael’s always teasing me about the lengths to which I go (and the lengths to which I make him go) in order to make the holiday special. It is widely acknowledged in our neighborhood that if you stay still long enough, I am going to decorate you or put you in a costume. For Jake’s first Halloween, for instance, not only did I sew him a full-body pumpkin costume, but I also made our little red wagon into a pumpkin float. I put Jake in his little pumpkin suit into the pumpkin wagon, threw a jack-o’-lantern and some pretty squashes in next to him, and dragged the whole shebang all over the neighborhood.
The year Jake was in second grade, I drove out to a nearby farm to pick up some pumpkins so that we could carve them into jack-o’-lanterns with the kids in the daycare. Driving back, I passed our neighbor’s house and felt a little pang seeing her boys—she had seven of them—out in the yard playing football with some of the other kids on the street.
When I got to our house, I cut the engine and sat quietly in the driveway, watching Jake. He was outside, too, but the contrast between our house and our neighbor’s was stark. One of Jake’s favorite activities that year was to create multidimensional math shapes—cubes, spheres, cylinders, cones, and, of course, his beloved parallelepipeds—out of items he found around the house. Spent paper towel rolls, Lincoln Logs, Q-tips, and craft sticks—everything was fair game. That evening, he was busy arranging some of the shapes on our porch, lining them up neatly all along the front railing.
I got out of the car, went into the house, and put a pot of water on to boil for pasta. Then Jake and I spent a companionable few minutes in the fading autumn light decorating the porch together—he with his multidimensional math shapes, me with my spiderwebs and gourds (and maybe a fog machine and a shrieking ghost or two). When I heard my neighbor calling her kids in for dinner, I had an idea.
I wanted Jake to have friends, but I knew I couldn’t send him out to play football with the neighbor boys. That wasn’t going to work. Jake’s physical delays made him clumsy and slow, and I’m not even sure he knew the rules of football at that time. (I’m quite sure he didn’t care.) We needed to find some common ground.
What if I made our house—specifically, Jake’s room—the kind of place that a boy couldn’t help but gravitate toward, so that those other boys would come to him?
The next day, I went shopping.
As always, we didn’t have much money, but I saw it as an investment in Jake. I bought him a loft bed and got cool fuzzy rugs and beanbag chairs for the area underneath it. I had Mike and a neighbor push our big-screen TV upstairs, even though it left us with just a little one in the den, and I bought Jake a PlayStation, as well as the videogames the teenager behind the counter told me he’d choose for himself. I bought every kind of flavor-blasted Doritos they had in the store, and made a big batch of chewy homemade cookies with extra chocolate chips. In short, I created the ideal kid hangout—a boy cave—and then I opened the doors.
Jake was a little baffled by my redecorating, but as long as he could have pictures of the solar system up on the walls, he didn’t care about the furniture. The new setup also played to Jake’s strengths. Because of his incredible visual-spatial skills, Jake was (and still is) amazing at videogames. He’s been known to attract crowds at Circuit City by playing the expert level of Guitar Hero with the game controller behind his head.
The kids came, and they stayed. In fact, Jake is still close with a lot of the boys he got to know that year. One of them in particular, Luke, is still a good friend. Luke’s mom and I had an unspoken understanding. She always hoped that Jake’s love of academics would rub off on Luke, and I secretly hoped that some of Luke’s football cool would stick to Jake.
The moms were my secret weapon, especially a couple of days into winter break, when their own boys had gone completely stir-crazy. They loved Jake. “Please, Kristine, rescue me. They’re trashing the joint! Can Jake come over to play?” Whenever another boy’s mom would drop Jake off after a playdate, she was always quick to compliment him: “He is so incredibly polite! I don’t know how you got him to have such lovely manners!” But I don’t think Jake actually had any more decorum than most other seven-year-old boys. He was just quiet. I would have been thrilled to hear Jake yell “Tickle torture!” when Wes provoked him, so I had my fingers crossed that if he spent enough time with his friends, he’d learn to be just as boisterous as they were.
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