Just as Jane intended, interacting with students from many different disciplines may be reaping benefits for my math- and physics-obsessed boy. A young literature student from the Honors College told him about Madeleine L’Engle’s wonderful young adult novel A Wrinkle in Time and even showed him how to find it in the library and check it out. Whether she can get him to actually read it remains to be seen. Like many people with autism, Jake finds it difficult to read fiction. He says that for him, reading a made-up story is like converting a Microsoft Word document into an Excel spreadsheet.
Most important for me, at the Honors College we have seen Jake get in touch with his sense of humor. I have three boys and run a daycare, and if I didn’t have a sense of humor, I wouldn’t make it to lunchtime. I don’t think Jimmy Fallon’s writers have anything to worry about from these guys unless there’s an urgent call for math jokes. But it warms my heart to see one of Jake’s new friends swipe the baseball cap off his head and turn it the “wrong” way—which for Jake means facing front—while the two of them laugh about why the chicken crossed the Möbius strip. (To get to the same side, of course.)
The biggest change is that Jake is finally capable of real conversation. Now, when I ask him how his day went, he doesn’t just give me a blow-by-blow account of his schedule. Instead, he tells me about the practical joke his friend Nathaniel pulled on his friend Tracy, or what his buddy Owen did when he flunked the calculus pop quiz and what Owen thinks his parents will do when they find out. He asks me about the daycare and tells me dumb blonde jokes because he knows they’ll make me roll my eyes. Because Jake is finally part of a back-and-forth discussion at school, he and I are finally having the conversation I always hoped we would.
His brothers benefit, too. One afternoon we turned on the TV to find that one station was broadcasting live from the Mecum car auction. For once, Wesley stood still, and I could almost hear the celestial music. Here were all the cars he’d ever dreamed of: Corvettes, Camaros, collectibles such as the car from Knight Rider, and of course a selection of his beloved Maseratis. As soon as we heard that the auction was taking place in Indianapolis, we were out the door. The boys tied their shoes in the backseat.
To get in, we had to register as “bidders.” Pretty funny, given that we had only $5,200 in the bank. But the kids understood that we wouldn’t be able to buy anything; we were there just to look. All three of them lit up with excitement once we got inside. Even I had to admit it was an amazing spectacle. The auction featured every car I’d ever heard of and a lot I hadn’t. Wes took the lead, walking around each car and looking at every detail, down to the hubcaps. Many of the entrants even let him look under the hood. The whole time, Jake dug into his encyclopedic memory, unearthing fact after fact about the cars.
I never thought I’d find myself crying at a car auction, but I found it deeply moving to see my three boys walk off, heads together, talking excitedly about what they were seeing. In particular, it seemed as if Jake and Wes had finally found common ground.
We went back the next day, and the next. Finally, the auctioneer got down to the last cars on the lot. We watched an Oldsmobile sell for $3,000 and a Volkswagen go for $2,500. Next, a blue-gray Nissan Z, barely old enough to be a classic, sputtered across the red-carpeted floor. The bidding started at $500 and climbed in hundred-dollar increments up to $1,000. I snuck a glance at Wesley. He was head over heels in love. Catching Mike’s eye, I knew he’d seen it, too.
At $1,500, the auctioneer got ready to call it: “Once … twice …” Without a word, Mike hoisted Wesley up onto his shoulders and helped him hold up our bidding card. The gavel came down, and the Nissan was ours. Mike and I grinned at each other. In true “muchness” fashion, we had just bought our middle son a car.
Were we out of our minds? Probably. All the dealers in the audience turned to smile at the little boy on his dad’s shoulders. I’m sure every one of them remembered what it felt like to fall in love with a car for the first time, although I’d bet that very few of them knew what it felt like to get it! But all Wes cared about was what Jake thought, and Jake was beaming, ear to ear. He held Wes’s hand the whole time we were doing the paperwork.
When we got home, Wesley ran upstairs and dumped out his coin collection. “What’re you doing?” I asked, stopping at the door of his room.
“Looking for my lucky penny,” he said, rooting through the change.
I smiled. My grandfather always had a shiny quarter for each of his thirteen grandchildren, and he always alerted us to lucky pennies lying on the ground. (I never suspected anything at the time, but now that I think about it, what were all those pennies doing out there in the Indiana countryside?) Whenever we passed a fountain, Grandpa John would give us a penny to toss in, reminding us to make a wish.
I’d always offered my own children pennies to toss. Jake had never been interested, and Ethan didn’t seem to care much either. But right from the start, Wesley had taken this wishing business very seriously. There was a fountain in the hospital where he’d go for therapy as a very little boy, and he’d often stand in front of it, carefully formulating his wish before tossing in the coin. Even when he got older, whenever we passed a fountain I’d slip him a coin to toss in.
Digging through the coins on his bedroom floor, Wes found his lucky penny. He polished it, looked at it, and then polished it again. “I can’t believe it, Mom. Today is the day my wish came true!”
Thinking that he would have been wishing for a fast car, I couldn’t stop myself from teasing him a little. “Really?” I said. “You wished for a Nissan Z?”
He looked confused for a moment, then shook his head.
“No, I never wished for a Nissan. I never wished for a car at all. The only thing I ever wished for was that Jake would play cars with me.”
Thanksgiving
Michael put his arm around me, and the two of us looked out a small interior window on the second floor of Jacob’s Place. Below us was the gym, where forty autistic kids and their families were playing and hanging out.
“Does it feel the way you thought it would?” I asked him.
“Better.”
“For me, too. I can’t put the feeling into words. What’s it feel like to you?”
“Thanksgiving,” he said. “It feels exactly like Thanksgiving.”
In January 2011, I got a call from the head of the town council in Kirklin. He wanted to have a ribbon-cutting ceremony to celebrate the opening of Jacob’s Place two days later.
The center wasn’t done by any stretch of the imagination, and we didn’t have a stick of furniture. I spent the next two days driving around picking up whatever furniture our friends could spare and purchasing a huge, lipstick-red circular couch with our credit card. We were so moved that the town wanted to make a fuss. Just a few years before, I hadn’t been able to convince anyone to rent me a space because our sports program was for autistic kids. Now we had a place of our own.
The ribbon cutting took place in the morning. Lots of families from Little Light and Youth Sports for Autism made the drive out. The mayor gave a speech, and the religious leaders of the town got together and said a prayer. About twenty kids helped me cut the ribbon, and then Mike and I stood holding hands and watching as our ten-year-long dream became a reality.
That afternoon, we got our first glimpse of what the weekends would be like at Jacob’s Place. The front room is a lounge, flooded with light from the big storefront windows. One wall is taken up by an old mahogany bar, donated to us and complete with an antique Coca-Cola mirror. Eventually, we’ll sell candy there to fund some of the activities. There’s an old-fashioned popcorn machine, which we fire up on game night. In keeping with the candy store theme, we commissioned an artist to make a mural out of different-colored jelly beans, just like I’d done with the children at the daycare. The opposite wall is taken up by that enormous red velvet couch.
There are interior windows everywhere, so that parents can keep an eye on their kids (and vice
versa) without having to be right on top of one another. Off the lounge, there’s a small room where the kids can watch videos and play games, and upstairs there’s a raftered study space with big tables where they can read or be tutored. There’s also a small, quiet room completely covered in soft cushions, with giant beanbags they can snuggle into. The lighting in there is on a dimmer. If kids find themselves overstimulated, they can duck in for a few minutes of sensory relief.
Once a month, we move the basketball stuff out of the way and use our video projector to throw a movie up against the big back wall. (It’s expensive to buy the rights to films, so we don’t do this as often as we’d like to, but we did buy the HBO movie about autism awareness activist Dr. Temple Grandin, and all the moms in the audience cried.) We’re still not fully funded, and there’s a lot we still want to do. A wall in the stairwell has been half primer, half celery green for a while, and some of the furniture, all of which has been donated, is not in the best condition. But a couple of times a month, a group of moms gather around that red couch just to talk, while the popcorn machine hums along and the kids do martial arts in the back room. This is my lifelong goal, to be running a place where nobody ever tells a kid what he or she can’t do or tries to “fix” anyone. It’s Jake’s hope to have these safe spaces for autistic kids all over the country, because we all need other people and other families—a community—to help us through.
That first day, I could see it as it would be: Moms drinking tea and talking about doctor’s appointments and food aversions, while their kids explored every nook and cranny of the building, eventually ending up in a game of tag in the gym. Dads playing catch with their sons, using the soft, squishy balls that we’d bought.
A reporter from a tiny local newspaper called the Frankfort Times was there, and she talked to Michael and me, as well as to Jake. Small local papers had done a number of stories about Little Light and the sports program, and we were always happy for the publicity. We wanted people in the area to know that the charity was there for them. The article, when it appeared, was a brief description of the building and the services we hoped to provide.
Then we got a call from The Indianapolis Star. I still don’t know how the reporter heard about Jake, whether it was through the Frankfort Times, the Kirklin Town Council, or someone else, but the reporter asked if he could come out to talk to us. Of course, we said yes. Interest from the Star was very exciting, even if it turned out to be only a little piece in a way-back section of the paper. When the reporter showed up at our house, Michael and I were meeting with our accountant to talk about refinancing our home. After a few quick questions, I turned the interview over to Jake, confident that he’d represent the charity well. He knew everything, and I thought it might even be interesting for the reporter to hear firsthand what sorts of things the kids were doing there with their friends.
“Don’t forget to tell him about family game night,” I reminded Jake, then went back into our meeting. Ten or fifteen minutes later, I heard the front door close. When I asked him later, Jake said that their chat had gone well. It never occurred to me to ask what they’d talked about.
Later that week, just as daycare was starting, the Star reporter showed up again at our house. He asked me for a few pictures of Jake for an article that would appear in the Sunday paper. That night, Dr. Darold Treffert called to ask our permission to talk to the Star reporter about Jake. Dr. Treffert lives and works in Wisconsin, so I was impressed by the rigorous reporting for a little article about an autism charity in Kirklin, Indiana, population under eight hundred.
On Sunday morning, we woke up early to get the paper. I was really excited. Even if the article was buried behind the ads for yard sales and free kittens, it was still a big deal to us. We piled into the car and drove to Kroger, a grocery store about a mile up the road from our house. When we pulled into the parking lot and got out of the car, we heard people nearby saying, “There he is! There he is!”
Mike and I looked around, confused. Our town doesn’t get very many celebrities, but once in a while a NASCAR driver will come through, and people will make a big fuss. But there wasn’t any NASCAR driver in the Kroger parking lot. All those people were pointing and looking at Jake! Jake, who was pulling up his shorts and giving Ethan a hard time about a Katy Perry song he liked. Before we knew it, there was a crowd gathering around our son, and they were asking him to recite pi.
When I saw Jake’s face on the front page of The Indianapolis Star, I was shocked. “Why?” I kept asking Michael, truly confused. “Why does anybody care about Jake?”
It’s not that I didn’t think he was special, but I’m his mother; I’m supposed to think that. I understood that Jake was unusual, but he’d never seemed “cover of The Indianapolis Star” unusual. All our friends knew about what he was doing, and nobody had ever made a big deal out of it. Putting him on the front page of the paper seemed a little extreme.
By the time we got home, the phone was ringing off the hook. I talked to Jake’s old elementary school teachers and the parents of kids he hardly knew, as well as our friends. Everyone was reaching out. We hadn’t kept in touch with a lot of these people, so they had no idea what he’d been up to. One of his former teachers thought that we’d left her school because we’d moved. Talking to them, I started to understand how strange Jake’s story must have seemed to an outsider. The most common reaction was incredulity: “Is he really doing all this stuff?”
By the afternoon, I was exhausted. It seemed that we’d caught up with everyone we’d ever met, and all this on the heels of the charity’s successful first day, which had been a huge event in itself. By early evening, the story had been picked up by the Associated Press, and consequently by almost every major media outlet in the world. By the time we woke up the next morning, it was everywhere.
Honestly, I’ve never experienced anything in my entire life like the next few days. Every morning show I’d ever heard of, and every newspaper and television station, called us. We’d pick up the phone, and a radio announcer would be on the other end saying, “You’re on the air!” Our neighborhood is normally completely quiet. Aside from birds or the occasional kid yelling to a friend as they wheel past on their bikes, you never hear anything on our block. So it was very unusual to wake up to the sound of a commotion.
“You have got to be kidding me,” I heard Mike say from downstairs. There were reporters camped out on our lawn.
People called from Hollywood. Jake got job and scholarship offers from all over the world. Research firms and think tanks called, along with Stephen Wolfram, the man who wrote the Mathematica software and developed WolframAlpha, a computational knowledge engine. Later, a friend sent me a Chinese newspaper. The only thing I could read were the words “Jacob Barnett, age 12,” floating in a sea of Chinese characters.
We could barely leave our house. There were girls outside holding up signs that read, “We love Jacob!” Wherever we were—at Dunkin’ Donuts, at our brunch restaurant, at the grocery store—people came up and asked Jake for his autograph or to take a picture with him. (To his credit, Wes made only one effort to cash in on his brother’s newfound notoriety. “Maybe we can get to see [skateboarder and actor] Tony Hawk now?” he said hopefully.)
A therapist who had been working with a kid in my daycare for a solid year screamed like a teenager when Jake opened the door. That was the most ridiculous thing I’d ever seen. “You were here last week. Nothing has changed between last week and this week,” I said.
We were scheduled to go to a wedding the next weekend, but I canceled. At that point, Jake would have upstaged the bride and groom.
The glaring spotlight was overwhelming and, frankly, pretty unpleasant. Reporters can be very persistent when they’re on the hunt for a story, and some of them were aggressive. A lot of the charity our family does is anonymous because I really do feel that it’s more Christian that way, so this flood of attention was unwelcome, to say the least. And I was scared. People were acting cr
azy. I caught a pair of tabloid reporters from London trying to break into our basement. That night, I made Jake a bed on the chaise longue in our bedroom, and he slept there for a month.
It was also increasingly hard to protect him from what other people were saying about him, as when a tabloid in the UK said that he’d make the perfect supervillain. That comment hurt his feelings. “Why would they say that without knowing me?” he kept asking us. “You know I would never do anything to hurt anyone, right?”
The media eventually moved on, but the experience was a transformative one for Michael and me. For years, we’d thought of ourselves as living in the shadow of Jake’s autism diagnosis. Now we have a different perspective. Jake is still autistic. His autism is not something he has overcome, but something he overcomes every day. He is still acutely sensitive to all sorts of things that go completely unnoticed by the rest of us: bright lights, the humming of an incandescent bulb, the change from concrete to tile underfoot. He takes pride in the ways in which he is different, and given the chance to drop the label, he has chosen to keep it. But the media helped Michael and me understand that autism is no longer the dominant theme of our journey with Jake.
Initially and for a long time afterward, I didn’t understand why people responded to Jake the way they did. I think I have a better understanding of it now. Growing up with my sister, Stephanie, an art prodigy, and marrying Michael and mothering my children may have skewed my understanding of how unusual these gifts actually are. As soon as the piece in The Indianapolis Star came out, I talked to Dr. Treffert, who explained that there’s a scale of gifted children ranging from mildly to moderately to highly to exceptionally to profoundly gifted. Jake belongs in the profoundly gifted group. According to Miraca Gross in her book Exceptionally Gifted Children, there is less than one profoundly gifted person per one million. People like Jake are extremely rare.
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