The Wrong Bus

 

The phone rings at 10 to 4 on Friday. Ned answers it. “It’s Alex’s bus!” Ned says. “It’s downstairs!”

 

Shouldn’t be. Alex catches a different bus from his school and that takes him to an afterschool program about 10 blocks away. Some 13-year-olds could just walk those 10 blocks, but Alex can’t. From the program, another bus picks him up and brings him home at about 5 o’clock.

 

“Tell them I’ll be right there!” I say. “They’re not supposed to be here!”

 

When I get downstairs there the yellow bus sits, cars zipping down Fifth Avenue and ignoring her blinking red flashers. “I dunno,” the bus driver says. “They just brought all four kids out to us together…”

 

I call the unit teacher, who’s there almost two hours after school has ended. “Thank goodness you were home,” she says. “On behalf of the entire school staff, I want to apologize.” I call the afterschool program to see if they were open and I didn’t miss some important flyer. The lady at the afterschool program utters the words that many who work with the autistic say when they hear “wrong bus”:

 

“Oh my god!”

 

Alex’s school has been getting this busing arrangement right for weeks. What happened? I don’t even think of asking Alex as he turns on his iPad, claps on his headphones and begins to watch Elmo. “What happened?” I ask the unit teacher a few days later, in the e-mail she requested. “Thanks for your understanding in the matter and I assure you that this will not happen again,” she writes back. Later, a teacher from Alex’s school calls; she was in charge of busing on Friday. She apologizes over and over.

 

I trust them – trust them more, I often think, than I’ll trust other people who will care for Alex in one way or another before I die. Slip-ups do happen. It was only an hour and technically it wasn’t even the “wrong” bus, but it does open a dark door.

 

“Ned,” I ask, “what would you have done if I hadn’t been home?”

 

“I would have gone downstairs and brought him up,” he says. Luxury, I admit, to have a back-up like that.

 

The dark door opens on stories of kids like Alex left on a bus long after hours, stories of kids who pinball down sidewalks while state police radio each other and strangers look on wondering why in hell someone doesn’t corral these people. Once Jill was on the subway with Alex when he sprinted to another seat at the other end of the car. Imagine if he hadn’t bolted toward a seat but through a closing door of the subway car? Imagine the glimpse of his back down the platform while the subway door slid shut in Jill’s face, trapping her in front of the window as Alex vanished up the stairs and into the endless streets.

 

I have no idea if my 13-year-old boy could get off the school bus by himself, walk through an apartment building lobby, press an elevator button, and come home. I like to think he could, but I don’t have that luxury.

 

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Chow Down

 

“Alex, dinner!” might sound like an echo across normal backyards the land over, except in our house it’s followed, every evening, by “Here are your hot dogs, Alex.” Hot dogs sliced by the width, about a half-inch a slice, and they have to be Hebrew Nationals because if you use any other brand you’re not fooling anybody.

 

Compared with the rest of his development, Alex’s diet is arrested (I’d say “retarded” but don’t for reasons that are also starting to feel scary), and it’s progressed little in several months. Vitamins and stuff like Benefibre help, but regarding food we’re still parked at La Crème pink yogurt (“pink” is not an official flavor; raspberry or strawberry, doesn’t seem to matter which, but try the pale vanilla or the orange-y peach and you’re not fooling anybody). Utz Dark Special pretzels, plain cracker flavor Goldfish. Chocolate chip cookies, with Chips Ahoy a favorite, though homemade from the mix will do. Just make them crunchy with no soft-and-chewy crap.

 

“Alex, try these kale chips!”

 

Kale has a rep worse than that of hot dogs that aren’t Hebrew Nationals, but recently Jill found this recipe where you chop kale, spread it on a cookie sheet with olive oil, salt it like mad and broil it for 20 minutes. You wouldn’t believe how much the result tastes like junk food. “Alex, here-” I try our time-honored method of touching the tip of his finger to the stuff we want him to eat and then touching the fingertip to his lips and tongue. The salt! The oil! Who could resist? Alex twists his lips into a sad rectangle, downturned at the corners, and makes a sound like Snoopy when he’s unhappy. Blaaaah!

 

Alex used to eat the cheese off a slice of pizza, that sausage-substance patty from inside the McDonald’s breakfast biscuit, maybe a few berries mashed in his teeth and smeared across his lips. “Jill,” I ask, “what can you tell me about Alex and eating these days?”

 

“I dunno,” she says. “It’s just so difficult. I did get him to drink chicken broth the other night, but I didn’t strain it enough and he kind of gagged on a bit of vegetable...”

 

It isn’t a matter of what but also how: We want Alex at the dinner table. Ned sets placemats for him, but Alex just snatches his bowl of Hebrew Nationals and heads back to the couch to eat them over his iPad. I know we should drag him back, take away the food, starve him until he eats food in the place where we, his family members with the supposedly whole brains, know it needs to be eaten. People have given us this advice, I notice that the people who give such advice often don’t have autistic children themselves. We let him eat his hot dogs at the couch over the iPad for yet another night, but I know we’re just fooling ourselves.

 

 

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The Flood of Water

I’m sitting there doing something when I being to feel I’ve heard the toilet flush about five times in a row. Then I hear Ned call, “Alex has flooded the toilet!”

 

I round the corner off our living room and there’s half an inch shining across the black and white tiles of the bathroom floor. My temper takes a predictable turn when I see the water. I step right into the water with my sneakers. Screw it. Except, to paraphrase Fargo, “He don’t say ‘screw’, if you get what I’m sayin’.”

 

“Ned!”

 

“What?”

 

“Ned, I need your help!”

 

How come I can’t call on Alex? How come all I can do is yell at him to get the hell out of the bathroom?

 

“Jeff, I’m coming!” says Jill.

 

“I’m not talking to you! Ned, bring me the dustpans!”

 

The only bathroom trouble Alex has ever had – aside from aim, which as a guy I can tell you is over-rated – is a glass-eyed fascination with running water. He runs the faucet long enough when brushing his teeth to draw an environmental rebuke from Ned. His companion Daniel says he loves looking over the side at the Staten Island Ferry as the waves wash by; maybe it’s the whitecaps rising and fading, or the rushy sound.

 

I’m talking to no one as I use the dustpan (“Thank you, Ned! Good man.”) to scoop and dump splash after sort-of brown splash into the tub. The dustpan is flat and the floor is flat; doesn’t that make sense? Besides, months ago Alex ripped the crap out of the car-washing sponge we bought for these floods. This is the sense of autism.

 

The flood has something to do with the toilet paper being near the end of its roll. Reports Jill, “I heard Ned telling Alex, ‘Stop using so much toilet paper!’” Sounds about right for my life.

 

“Ned, bring the Swiffer!”

 

Ned does help. He lugs the sopping beach towels – it’s deep winter so who cares if we use them, and we use them to make the bathroom floor stop shining – in a bag to the basement laundry room. We went him back in half an hour to put them in the dryer. He gets a laundry lesson.

 

We have to look at the plusses. Alex has learned a lesson about flushing five times in a row – maybe. Ned has learned a household chore. We get the clean bathroom floor until Alex goes in there again, this time for legit business. Aim remains over-rated. 

Opinions

 

Alex and I get into the elevator with a neighbor. Perfectly normal thing to do after the end of a perfectly normal day. The door slides shut and the neighbor says, “Five, please” when I ask what floor she wants. Then perfectly normalcy ends.

 

This violates my new rule of avoiding, if I can, elevators with neighbors when I’m riding with Alex. He still presses the buttons for a load of extra floors.

 

 

Alex presses three (not our floor) and nine (our floor). “Alex, press five, please.”

 

 

“Noooo!” he says. “Alex, press five.” “Noooo!”

 

Once, I would’ve felt the neighbor’s eyes on my back. I don’t this time. I try to press five and Alex grabs my hand; my other hand holds a grocery bag. “Alex, press five now.”

 

Noooo!

 

I could put down the bag and, suddenly needing both my arms for this 13-year-old, force his hand to the five button. I guess I still feel the eyes for a moment, though,  because I don’t force his hand.

 

We get to three. Alex dashes to the door, in front of the neighbor, and stares out. He curls the fingers of two hands to make his own 3.

Eventually we get to five. I forget how, but I may have pressed the button myself. “Have a good night,” I say to the neighbor. “Take it easy,” she says. “Take it easy,” Alex says.

 

Alex, walk this way…  Alex, press five, please …  Those times he doesn’t, I grunt like Basil Fawlty in comedic exasperation even as I know that whatever Alex is doing is no passing instant but the way things are and the way they’re going to be. I’m getting lain old pissed at the idea that not every parent has a son who’s going to have to be a grown-up amid the wreckage of our special-needs budgets. Some doctor put it best 14 years ago: “You’re at the mercy of everybody with an opinion.” At that time, I believed he was talking about just Alex’s year in a hospital. Now I think he was talking about the rest of Alex’s life.

 

 

What must people must think when they see Alex? I pity the parents. Why do they let him do that? Why don’t they find a home for him somewhere?

 

He has a home. The opinions we have of him there will do for now.

 

How Do You Feel?

“How do you feel, Ned?” Ned is Alex’s typically developing younger brother, and this Christmas afternoon he’s on the couch.

 

“Okay, dad.”

 

“Do you want anything?”

 

Like his older brother, Ned doesn’t answer. Ned is absorbed in the Cartoon Network, though, and doesn’t have autism. “I feel okay,” Ned says, “but I don’t feel okay when I move.”

 

“Don’t move then.”

 

Alex has gone with Jill to her stepfather’s for a holiday party. Ned, normally a rush at such things, is home with a slight fever and a queasy stomach. Jill and Alex just left, and it was Ned’s decision to remain home. Good thing: Not 20 minutes after they left, he went pink and felt kind of hot for a few minutes.

 

“Ned, this just happens sometimes during the holidays.”

 

Tell me about it. About 20 years ago, I got sick every Christmas. Bad sick, too, bathroom sick. I blamed everything from bad shrimp at an office party (back when I had an office) to the stress of running around trying to buy the gifts for both Christmas and Chanukah. It was a mess, for a while. “Christmas is hard on non-Jews,” my late mother-in-law used to say.

 

“Can I have some more ham?” Ned asks. Instead (see “queasy”) I make him pasta with salt and pepper. “Thank you for the food,” Ned says.

 

Thank you for the food. Ned naps on the couch, turns pink and warm for brief times, and is mostly miserable because this bug struck during a school holiday and he can’t see friends. He dozes to the Cartoon Network. I could, at any moment, ask “How do you feel?” and get an answer.

 

Ned’s illnesses, so far and knock wood, have been easier on me than Alex’s. At any time in Alex’s life when he was sick I could’ve asked “How do you feel?”, from those first moments in the hospital when he was intubated in a plastic box to the terrifying depths of his seizure this last September. I could’ve asked him at any time. He never would have answered. All we can do with Alex is stare and watch for the flicker of the eyes, slide our hand inside the back of his shirt and feel the fever burn our palms. We can watch and watch and wait, but we cannot ask and get any real answer.

 

“Can I have some more ham?”

 

“Sure you don’t want to wait, Ned?”

 

“Maybe I’ll wait.” I wish I didn’t feel that Ned’s sicknesses, like the other bumps and downs of his life, will be easier on me, but I do. Doesn’t seem fair to either kid.