Last Friday night Joe had four tickets to a Monster Truck rally in town, which meant we had to decide which of the kids he should take.
This was an easier decision than you might imagine. Rose smiled sweetly and shook her head when I asked if she was interested, and Jack politely declined, which is to say he screamed, “Absolutely NOT! That sounds TERRIBLE.” For once, I had to agree.
“Okay, Jack. Daddy will take Joey, Charlie, and Henry. You and Rose will stay with me.”
“We will get the Kid Cuisines,” he reported, referring to the TV dinners he saw advertised on Nickelodeon during winter break. (The first time he asked for them, he pronounced it Kid Coo-sines, and Joe and I had to avert our eyes from one another so we wouldn’t burst into giggles.)
“And then we can get a movie. From RedBox.”
With a full cable package and zillions of movies on demand at our fingertips, we’ve never rented from RedBox. But every week at the grocery store Jack eyes the tall red column. Sometimes he wanders over to scroll through the different movies, shouting to me where I stand checking out. “They have. The CROODS! But it’s OUT.”
The degree to which he obsessed over these two items—a frozen dinner and a DVD from RedBox—is nearly indescribable. He followed me around for the rest of the afternoon, explaining just what kind of meal he would choose (chicken fingers and macaroni and cheese with a brownie), which grocery store had the best selection (Hannaford’s), the one he recommended Rose try (same as his, but with pudding for dessert). For me, he suggested a Banquet meal; the adult-sized equivalent of a Kids Cuisine.
I objected. After two weeks of holiday indulging and junk food, the last thing I wanted was a plastic tray full of chicken fingers and frozen pasta. In the spirit of health, I figured I’d hit the salad bar.
“You must get one. To try.”
I murmured the phrase I say when I want to put him off. “We’ll see, Jack, we’ll see.”
I’m used to this from him; his bossy, controlling behavior, his need to manage and be in charge. But something about Jack’s intent to orchestrate our quiet evening touched a nerve.
For some reason, listening to him perseverate about where we would sit and how we would eat and what we would watch made me ponder the question that lurks quietly in the recesses of my mind: will Jack live with us forever?
I fast-forwarded twenty years from now. Schlepping to Hannaford’s with my giant man-child to pick our TV dinners, then driving back home to sit on the couch—Jack towering over Joe and I—and watch the Wizard of Oz.
When I was in graduate school I worked as an intern for the Attorney General’s office, building databases in Microsoft Access. My small desk was one of many in several rows across the large room, and I sat next to an attractive, stylish woman with short dark hair. Donna, I think her name was.
Donna had an adult son who lived with her and her husband. He was developmentally disabled, and emotionally about six years old. Every Monday morning she’d describe the weekend outings the three of them took together; PG movies, walks through Washington Park at the annual Tulip Festival, breakfast at the bagel café in town.
It sounded depressing beyond words. I nodded my head while she talked and smiled back, but I was really thinking Oh my word what kind of life would that be?
And here I am, twenty years later, staring down the same path. Only instead of cream cheese and lox and tulips, mine appears to be lined with frozen dinners.
I mean, I wouldn’t say I dwell on it. I think about it in the same way I wonder whether Joey will speak fluent Chinese after taking it all these years and if Rose will marry a man we all like and where Henry will go to college (or a detention center). It is fleeting, but it is there.
I’ve mentioned it to doctors and family and friends and they all say the same thing. They wave their hands in the air and tell me it’s too soon to tell, they remind me to look how far he’s come. Remember when he was just two and you didn’t even think he’d speak a single word ever?
And I nod my head in agreement. Because really, they are right—it is too soon and he is doing so well and who can tell the future anyway?
Once we got to Hannaford’s, Jack plucked a cart out of the corral and marched decisively towards the freezer section. His face lit up as soon as he saw the Kid Cuisines and Banquet meals, and right away he started to count out a total of seven dinners.
“But Jack,” I protested. “It’s just the three of us.”
“Everyone. Everyone needs to try one.”
A few weeks before Christmas all the kids made gingerbread houses. As usual, Jack couldn’t wait to organize, to control. He hopped next to each brother and sister, exuberant, while they put on the finishing touches; M&M’s trapped in globs of white frosting, Christmas trees listing to the side, peppermints lining crooked walkways. And when they were done, he gingerly carried each confection over to the side counter, lining the mini houses up according to everyone’s age.
He snatched my phone and stood back to take a picture, and a strong sense of unease and disquiet washed over me. But I couldn’t put my finger on why his behavior made me uncomfortable, and a few minutes later I’d forgotten all about it.
Watching him stack up seven Kid Cuisines in the middle of Hannaford’s, I felt the same unease I did for the gingerbread house ritual. And this time I put my finger on the reason.
What, I thought to myself as I pushed the full cart through the store, Will he do without them?
It’s one thing for him to live with Joe and I as an adult. But Jack is so used to being one of many, brother amongst five, part of a dancing, giggling, milk-spilling group. He thinks in multiples of seven, not tableaus of threes. But eventually–hopefully!–the rest of these kids will grow up and move out and make lives for themselves. Where does that leave Jack?
I have made peace with having a child with autism. I really have. I have come to terms with the fact that I have a special-needs son who—although has made tremendous gains—will always struggle with social behavior and communication.
I thought I had made peace with the possibility that he may not live independently. But sticky gingerbread houses and greasy Kid Cuisines have made me understand I have not.
But it’s not for reasons you may think. It’s not because I don’t want him here, that a lifetime of stimming and bossiness and sexy pancakes is more than I can handle. To be completely honest, there’s little I want more than to be able to shelter my forever-young boy—my son who eschews nights out at truck rallies in favor of RedBox, who jumps with glee in the freezer aisle of the grocery store—from the harsh world of mortgages and traffic detours and zig-zags.
But deep down, I know that ultimately he wants to be a part of that world, and to be stuck in ours will break his heart more than it will break mine.
It’s no accident that peace signs are circular. If I make mine then, I can help him make his–with whatever our future holds. Together, we can bend down and smell the tulips and appreciate their glorious explosions of color.
On Friday night we came home and Jack unloaded the bags, chattering and hopping with anticipation. Carefully, he pulled plastic wrapping from the trays and read the directions for heating them, exclaiming, “You can SMELL the chocolate in the PUDDING!”
Settled into our red couch with him on one side of me and Rose on the other, I ate my Banquet meal fresh from the microwave.
And you know what? It tasted better than I expected.