2004, Wilmington, North Carolina

By Shawna Kenney

“Do I look like Sponge Bob?”

My nephew Alex blurts this while we’re in the car, three adults talking around him about my father-in-law, his Grandpa’s, lung cancer. I’m driving. Alex sits in the front passenger’s seat, his face twisted to the right-side window, smiling hard up at his reflection. His straight, reddish brown bowl-cut needs a trim.

“Now why in the world would you think that?” I ask.

His Uncle Rich and Uncle Chris, my husband and brother-in-law, are laughing in the back seat.

“Because I have a square face and freckles and a big smile,” he says.

“True,” I say. “But he’s a cartoon and you’re much cuter.”

Still staring at himself in the glass, Alex taps the front teeth of his frozen smile with a finger — each one twice — then drops the pose, faces forward, and focuses on the infinity of yellow lines for the rest of the three-hour trip, rarely speaking. Not because he’s rude, or even because he’s 10, but because he is autistic.

One of Alex’s mom’s books calls autism “the invisible cage.” Another says new studies show autistic brains are in a constant state of stimulation, and that the autistic’s poor communication skills “could be an attempt to control or diminish this arousal.”

Alex is on the high-functioning end of the spectrum. He attends third grade at a regular public school, where he is in class with other autistic children most of the day — some very low-functioning, who sit in corners by themselves, rocking forward and back or flapping their hands.

Alex is integrated with the “normal kids” for math, physical education, lunch, and recess. Alex’s teacher says that when any student is absent he is the first to notice and ask of his or her whereabouts. When the child returns, Alex says, “Welcome back. We missed you. Are you feeling better?”

For the past two years in a row he has won an award at school for being “Most Compassionate.” After years of speech therapy, he speaks clearly now, but still pronounces “R” as “W,” like a toddler.

His mother worries about how he will fit in socially, in years to come. There are no awards for compassion in high school.

For a long time everyone thought Alex couldn’t read. He hates homework, but sometimes reads every sign he sees out loud when riding in a car.

Conversation is rare. The doctors tell his parents not to expect it. Try saying hello to him and he’ll look elsewhere, saying nothing. Ask him how he’s doing and he’ll answer “just fine,” robotically. Ask him if he wants you to sew his ear in the sewing machine, though, and he shrieks and laughs, “What are you, cwazy?” Ask him anything silly or violent and he perks right up, coming up with answers you’d never expect.

He spends a lot of time playing Nintendo, and once he’s entered that digital universe, communication is completely impossible. Galaxies are collapsing! Duals are being fought! Bad guys are closing in! You can literally say his name dozens of times and he will not respond.

Turn the TV off while he’s watching a movie, and he will scream.

My husband Rich’s father is dying. Hospice told us this a month ago, while we were in California preparing to move to Wilmington, North Carolina. I am going to graduate school there. It’s quiet, and I’m betting I’ll be able to write and think there. Rich’s mother, father, brothers Chris and Mike, and our nephews Brandon and Alex live in Charlotte.

We stuffed our car and little U-Haul in Los Angeles on a Tuesday night, and made it to Charlotte by Saturday morning. Alex ran out to greet us in the driveway. He doesn’t exactly hug you so much as he leans in, slams his body against your ribs, and waits for your arm around his shoulder. After the hug, he lead us into the living room, where every Star Wars toy his Uncle Rich had ever given him was laid out in perfect rows on the couch.

Then we went upstairs to visit with the man who no longer looked like the man we knew. The potbelly was gone. His cheeks were hollow, covered in skin jaundiced from liver failure. His head was bald, and random gray whiskers poked out from his once-bearded face.

His breathing was labored even while lying in bed staring glassy-eyed at the TV. But the corners of his mouth turned up when we walked in to his bedroom. Lying on his bony left arm, he slowly raised his right one up to hug Rich.

Alex and his Uncle Chris are riding with us to Wilmington, to help unload our things into our new 75-year-old house. It’s an adventure for Alex, and a break for his mom, who is eternally exasperated. We’ll spend the night and bring them back to Charlotte tomorrow.

Chris, 24, is a bit of a Nintendo champion himself. Bearded and built like a football player, he is the biggest and youngest of Rich’s brothers. Rich’s mom has heard Alex on the playground bragging to other children that his “Uncle Chris is bigger than anyone else’s uncle, so there.”

At 4′ 10″, Alex is tall for his age, but perpetually slouched forward. He can’t touch his toes. He has a hard time catching a ball. While watching TV, his mouth either hangs open in awe, or rests in a huge, toothy smile. His eyebrows raise and lower, his green eyes growing bigger and smaller, mimicking characters on the screen. Like most autistic kids, he exhibits a total lack of social awareness. We are not sure how much he understands about his grandpa’s illness.

We have been living in California for most of Alex’s life, visiting once every two years for Christmas or Thanksgiving. This morning, while everyone was making breakfast, Alex yelled, “Don’t put butter on Uncle Rich’s toast because it’s made of milk!” We couldn’t think of the last time we’d used the word vegan around him, but he remembered the concept. Four years ago, he and Rich watched a documentary about the making of Star Wars, and to this day Alex repeats tidbits verbatim.

“Foley sound is when they match live sound effects with the action of the picture,” he’ll say. Or “Each X-Wing was filmed separately over a blue screen.”

A sign announces the town we’re in was once the “Home of Randy Travis.”

We stop at Burger King. On our way in, we see a man with what looks like the skin disorder impetigo, and Alex loudly says, “That man is burned!”

“Yes, he already knows that,” I say, putting my arm around his shoulders, hoping that’s the end of his interest. We get in line behind the man and while I’m reading the children’s menu out loud to Alex, he looks up at the man and asks, “Does that hurt?”

The man smiles, his blue eyes crinkling at the edges of a thin, well-worn face. “No, it doesn’t. But you have to be careful and don’t get too much sun, OK?”

Alex nods. “Or else you can get burnt?” he asks sheepishly.

“Yep. So remember your sunscreen, OK?”

Alex nods again. A girl in front of the man turns around and asks, “Why do you look like that?” Her mother pulls her close and apologizes.

“It’s OK. They have to ask questions,” he says, still smiling. “It’s natural.”

There is a list on a wipe-board in Alex’s room that he refers to every morning to get ready: eat breakfast, get dressed, put on shoes, brush teeth, backpack. When he gets home he checks the afternoon section of the day: homework, 10 sit-ups, 10 push-ups.

“No Noises!” is scrawled in blue ink across the top of the board. He grunts, beeps, hums, growls, burps, and clears his throat over and over again regularly until someone tells him to stop. He is unpunishable. “Time-out” doesn’t work because, as his father says, “You can put him alone in a room and he will entertain himself for hours with a piece of lint.” His parents refuse to put him on medication. They’re now trying a vitamin combination of calcium and magnesium, which has been said to improve many autistic symptoms.

When we arrive in Wilmington, we put Alex in charge of Rich’s Star Wars collection. He takes each Star Wars box and gently delivers it to what will be “Uncle Rich’s office.” When there are no more toy boxes, he disappears while we finish unloading the heavy items. We peek in on him when we’re done, and see dozens of the loose figures standing at attention in neat, parallel rows across the hardwood floor.

“I’m organizing them,” he says, without looking up.

It is midnight. The crickets here are deafening. We are all awake on inflatable mattresses in the center of our house-with-no-curtains. Alex is quietly bashing one plastic robot into another, thrilled to be up way past his bedtime. The phone rings and we, the adults, stare at one another. Rich picks it up, and a conversation confirms what we feared.

“Dad died,” he says, handing the phone to Chris. Alex stops and frowns deeply for a second, almost crying, then continues with his robots as if he’s forgotten what he’s sad about.

“Time for bed, everybody,” Rich says. “We’ve got to leave early tomorrow.”

We all wake around 6 a.m. None of us slept well.

“Good morning, Mr. Alex,” I say while packing up.

“I have to take my vitamins,” he answers.

The drive back is somber. We are searching for places to eat between the cotton fields, farmhouses, empty peach stands, and the occasional modular home. Alex rummages through the glove compartment.

“What’s this?”

A map.

“What’s this?”

A tire air-pressure thingy.

“What’s this?”

A ponytail-holder.

“What’s this?”

An extra toothbrush.

He carefully avoids asking about the tampons.

Back at the family’s home, there are relatives to call. Arrangements to be made. Papers to sign. Photos to dig up. People flock into town from everywhere over the next few days. Some I’ve met on holidays, some not at all in the nine and a half years Rich and I have been together.

“Will you be bored?” they all ask us. “Won’t you miss LA — the celebrities, all those movie stars?”

We never saw stars in Los Angeles — not the real kind, made of hydrogen and helium. There is too much smog. There are too many lights. If you drive out to the desert, pull over, turn off your car, and look up, then you can see them. From the Hollywood Hills, way up Mulholland Drive, sometimes I settled for the twinkling houses in the San Fernando Valley below.

Tonight, there is a service at the funeral home in Charlotte. My father-in-law wasn’t religious, but most of his relatives are, so the family has asked a local preacher to say a few words.

Not knowing him at all, the white-haired bespectacled man speaks eloquently of his own three brothers’ struggles with cancer. “Ash to ash, dust to dust,” goes the prayer. I imagine our bodies’ chemicals returning to the earth and atmosphere, recycled into other entities, replenishing soil. Science says the building blocks of our bodies have existed for billions of years. They say every atom on this planet was, at some point, inside a star.

The preacher comments on the photo collage and prayer-cards Rich and his brothers made for the ceremony. He asks that we all remember this man in health and happiness, then asks if someone could stand and say a few kind words about their loved-one. The silence is palpable.

Grief-stricken and shy, no one says anything for an entire minute.

“He was a good Gwampa and a nice man.”

It’s Alex, standing in the back. His mother beams with pride, tears running down both cheeks. And I squeeze my husband’s hand, thinking that Carl Sagan quote: “We are all star stuff.”

Shawna Kenney is a freelance writer and author of the forthcoming book, Imposters (Mark Batty Publishing, October 2007). She received her MFA in Creative Writing from the University of North Carolina Wilmington. Learn more at www.shawnakenney.com.

Posted by Elizabeth Armstrong Moore on Monday, April 30th, 2007 | Email This Post

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