Alone

 

Anne, our neighbor, has dropped by. She’s a smart lady who has set up a number of good situations for herself and her daughter. Her daughter is one smart person; she goes to a private school –paid for with scholarship – with the kids of Tom Hanks. How about that? If I had to pick one person to help with a parenting situation, Anne would be awful close to the top of the list.

 

She turns to me in our kitchen one night when both of the boys are home. “You can’t leave him alone at any time, can you? I mean, she got older and I could leave her alone. But you can never leave Alex alone, can you?”

 

No. Maybe it was six months ago (maybe a thousand years ago) that the phone rang at 4 a.m. It was a neighbor telling us that Alex had entered her apartment and turned on all the lights. Another neighbor – enormously successful professional man – found Alex in his apartment at about 4 in the afternoon and offered to help me escort my son back to my home. Another neighbor I caught early one Sunday morning phoning the security guard of our building and saying, “Yes, there’s a strange autistic boy in my apartment.” Pretty sure he’s gone into Anne’s place, too, and the place down the hall and the place up a few floors.

 

“Heard our door rattling at 3 a.m.,” one of the best friends we may ever have said once. She lives up on the 12^th floor. “Thought it was the wind.” Just the other morning Jill and I got into the elevator with a neighbor and her dog. The dog seemed sweet. So did the lady, especially when she went for all the gentleness you can muster when something like this has happened to you and said, “I just wanted to say that your son came into our apartment the other day. My husband was asleep on the couch and nothing happened but-”

 

You could tell she was angry and sorry and felt a pain in her heart that she had to mention this. “-I thought I would mention it.” Jill and I thanked her. Does she have a little daughter? I wonder. Alex has a mustache and sort of a beard now. I’m afraid to leave home for more than a day because I wonder if Jill can handle him physically. A mother is supposed to handle a son, of course, sometimes for much of his life, but not physically.

 

Sometimes Jill says they’ll understand. Sometimes she says “fuck’em.” I wish I agreed with either statement.

 

Even if he doesn’t bolt on any given morning, I still have to roll out when I hear Alex rustling in our bedroom for his iPad. He generally starts the day by rocking in his bed. Some mornings, by way of a gift, I guess, I don’t hear the rocking at all. Some mornings, almost the time the alarm was going to go off anyway. Some mornings, 5:30.

 

Then he charges into our bedroom where the iPad has been charging overnight because he depletes it day after day, believe me. He fires syllables over our heads. Jill’s the one with the tough full-time job right now and I don’t him to wake her up. “Alex, quiet!” Pad pad pad he goes, one by one igniting each light in the house.

 

“So why,” an intelligent reader might ask at this point, “don’t you just charge the iPad in the living room, let Alex know that, and let him get up at dawn and sit on the couch and start the day with his private entertainment while you sleep?” Great idea. And it worked until that 4 a.m. phone call. After that call, I’m just scared of the dark.

 

Attack

I’m coming from the kitchen balancing a bowl of soup when I hear Ned’s shattering “Ow!”

 

What’s happened now? “He bit Ned!” Jill says as I round the corner. Ned’s head is in Jill’s lap, and I see the shaking shoulders I’ve seen way too often on my family members. We all see it – except Alex, who charges his little brother. He plunges toward Ned with his forearm to his teeth. You think it’s all elbow until he whips his arm out of the way and sinks his teeth down like Christopher Lee.

 

I grab Alex’s arm and waist and his neck and arms in what Uncle Lee in his martial arts period used to call “a full nelson”. I have my older son who has autism in a full nelson. “Alex stop this. Stop this or you could wind up in some place where they’re not this nice to you and you will have a problem!” Think I like saying this to my son? I manhandle Alex over by the door – what the hell else am I supposed to do? – and he collapses to the floor, screeching. He wraps his arm around my legs and bites my legs. (“Did he break the skin?” Aunt Julie asks the next day. “No, of course not.” Of course not, for now.)

 

“Jill,” I say, “I need you to stay home tomorrow. I know she can’t: Her boss is tough and anyway I don’t mean it. What I mean, as I’ll assure her later, is that saying it meant something to me.

 

He bit me. He bit me, the little bastard who stared at me through the plastic wall of the NICU isolette. It’s not right he does this. “Alex, you have to calm down...” He falls at my feet and wraps his suddenly strong arms around my leg and sinks his mouth toward my legs where I feel the what he’s always saved for his own forearm but on this night went into ned and into my leg. “Alex, get up! Alex please!”

 

I get him to the couch; he plunges toward Ned again. We didn’t go through the last 14 years to wind up like this. “Alex, leave your brother alone. Get a grip on yourself-” I take his chin – look at the beard he refuses to shave – and try to turn it toward my face. This always worked when he was a little boy, when all he did was bolt from our apartment and from restaurants. “Alex, get a grip on yourself or you’re going to have to go somewhere where they won’t be so nice to you.” I don’t know what I mean by this, but it seems to make Ned cry harder.

 

The fat moment peters out as Alex starts asking “What’s wrong? What’s wrong?’ He slaps his own face. Alex looks like’s about to cry, says Ned. And he does. “Sorry,” Alex says. “Sorry.”

 

“Ned,” says Jill, “are you all right? Watch the movie with us.”

 

“I know what to do,” Ned replies. “Just let me go to my computer.” He plays Minecraft on his computer. “I’m building solar panels,” Ned says. “Just let me go do that.”

 

Jill and I sit at the table and talk about eventualities. That’s what we always do. “Let’s get through this,” I tell her. I settle Alex down in his bed. Sometimes I listen to music on my iPod or play “Angry Birds” on his iPod while he goes to sleep. Not tonight. I stare at him as he falls asleep.

 

I come out to the table where Jill is sitting, staring at words of her own she’s written on her computer. The rims of her eyes are red. I tell her we’ll get through this. “That’s not what I’m crying about,” she says.

  

The Strike Is Over

I ran into a neighbor the other day, a former teacher who does well as a private tutor, and he asked me how it was doing.

 

“Good. Bus strike is over.”

 

“Oh yeah,” he said. “That.”

 

The last day of the strike was what would have been the third day of spring break, except that Hurricane Sandy – oh yeah, that – imprisoned the boys in our apartment for a week of no school in early November. The NYC Department of Education (DOE) had to make up for that, so they cut the normally week-long February break to two days. The boys were set to return to school, buses or no, on Wednesday, February 20.

 

The strike eavporated on the afternoon of Friday, February 15. I got home with Alex off the Third Avenue bus at about 3:30 and checked one of the local news sites to see that the union had received promises from the candidates that the next (likely) mayor of New York will pay attention to their demands (some job protection for the most senior drivers and matrons). By seven, it was over. The fall of the Alamo must have been like that – breathtaking and quick if you were there to see it and there to be affected.

 

(During the strike, the DOE issued Metrocards to parents and kids like Alex. They gave one to me that expired on Wednesday, February 20. Everyone I’ve mentioned that to agrees that it’s a weird coincidence.)

 

I always got Alex in, but a third of special-needs students in New York were out of school for as much as a month, their parents unable to get them to school. Now we move on. From something called the Office of School Support comes a memo that says, “Schools are currently collecting information on students affected by the strike and making a determination regarding what, if any additional instructional support and/or related services are required to make up for school time missed during the strike. The following steps should be followed once a school notifies the network that instructional support and/or related service(s) are required.

 

“If no DOE teacher or provider is available, or adding services to the student’ s program would be programmatically or educationally inadvisable, the network should provide the parent with make-up instruction and/or related services by manually issuing authorizations for SETSS (P-3s) and Related Services Authorizations (RSAs) as appropriate. All manual RSAs and P-3s provided for this purpose must be issued as follows …”

 

I also got a letter from the NYC Office of Pupil Transportation that they might soon approve one my $19 cab fares that I rang up one afternoon with Alex, because on that afternoon on the sidewalk I pretended to be kind of rich and just raised my arm for a taxi because I was tired of people trying to not stare at Alex on the Third Avenue bus.

 

Will they pay? Hope so, because I’m about to shoot myself in my SETSS and/or the P-3. On the first afternoon when his bus was rolling again and disgorged Alex right on time at 3:30 p.m., I handed the woman (see “matron”) two $10 Duane Reade gift cards. “I’m sorry you didn’t get what you wanted,” I said to her. “I wish it could be more.” True. True too that I was glad to gather Alex off that yellow bus without having to ride the stares of the Third Avenue bus.  

Unplugged

 

When the battery of Alex’s iPad runs low an image comes on the screen that I’m sure I’ll see in my own mind in my last moments: a dark battery shape with a single thin red stripe, and beneath it all a lightning bolt that seems to say, “Just a little more time, please.”

 

“Daddy! iPad!”

 

“Alex, you’ve got to plug it in. It is dead. You’ve got to plug it in.”

 

“Got to plug it in,” he says, “plug it in.”

 

All he has to do is sit there and give up the privilege of walking around with the damned thing. Alex isn’t feeling well – hot and sniffly – so he’s just sitting there anyway. Sniffly is also why Alex has been sitting there with the iPad all day until the screen goes dark and the little red stripe appears.

 

The iPad, like so many of Jobs’s creations, sucks juice through two pieces of white plastic, one a white cord and the other a square box. I plug the end of the white cord into the iPad while Alex sits on the couch. He pulls it out because it doesn’t belong. Steve Jobs never in his life had a day like many Alex has had.

 

“You have to plug it in!”

 

“Daddy? Daddy!”

 

“Hey Ned, can you take a break from whatever you’re doing and show him? Maybe he’ll listen to you.”

 

“Why would he listen to me? Fine – I’ll just drop everything and help Alex!”

 

We’ve sheathed Alex’s iPad (interesting that MS Word keeps automatically changing “iPad” to “Ipad”) in a hard case of black plastic called The Defender, and when you want to plug the iPad or Ipad into juice you slide off a piece of the back section to expose the hole where you insert the jack.

 

Alex is 14 now, and though I could say to him “Expose the hole where you insert the jack,” I just tell him again that the thing has to be plugged in and turned off for a while to charge.

 

“Daddy daddy!”

 

“I’ll be right there, Alex.” I feel like another dad in another family would make sense of this and make it work. Alex comes up to me with the piece of the black plastic back cover still on.

 

“Daddy!”

 

“You have to plug it in, Alex. Watch TV for half an hour while it charges. It’s just half an hour. I can’t change the laws of physics, Alex.” This is my offer to pollute my household for thirty minutes with the noise of Elmo.

 

Alex returns to the couch. I show him how the hard thing at the end of white cord slides into the hole. He unplugs it again within seconds. You would’ve thought they’d taught him about this at his school, where they have an iPad.

 

“Maybe they have two,” says Ned. We don’t. Sometimes I want to give up and just think that it’s Alex and the way he wants things.

 

“Daddy, iPad!”

 

“Plug it in! You know what to do.”

 

The red stripe turns green. Oh yes oh yes thank you, let me suck the power. Let us all suck the power.

 

Easy Rider

 

I get the idea one early evening, when Alex is darting into the kitchen for a bowl of pretzels, to ask him. “Alex, do you miss the school bus?”

 

He carefully takes off the iPad headphones to hear (reminding me of Ned) yet another thing his father is asking. “Do you miss the school bus?”

 

Quick shake. “Nooooo!”

 

Maybe he didn’t understand. He is autistic, after all. “School bus?”

 

“Noooo!”

 

“Do you like the subway?”

 

“Subway!"

 

Oh shit. Actually, a month into the strike of bus drivers and matrons (most of whom serve kids with special needs), Alex is become a pretty good rider. He more or less stands when he should and sits when he should, although when there are no seats on the 6 train – and there sometimes aren’t – Alex seems to have a hard time remembering to hold on to the pole, and often bends and twists while making faces at his reflection in the glass of the subway car doors. Alex usually walks with his hands, for some reason, clamped over his eyes. I escape the subway car at 23rd Street every day feeling like I’ve finished some kind of small mission.

 

 “Alex, do you know what street you get off at?” He doesn’t. Never.

 

This week the city began taking fresh bids for bus companies. The strikers say they’re starting to suffer personally and economically. (Many speaking in the media claim they also miss the kids on their routes, many of whom they’ve known for years; all I can say is that in almost a decade in the hands of the NYC Department of Education, Alex, 14, has rarely had a single bus, driver and matron for an entire school year).

 

When the strike started, about a third of special-needs students in the NYC were absent from class. Parents riding the thinning line of the middle class, it seemed, couldn’t swing it with bosses. But now, “Attendance is up,” says Alex’s unit teacher. “I guess parents are figuring out ways to make it work.”

 

Alex and I usually take the Third Avenue Limited in the afternoons; this city bus  stops about every 10 blocks and is the first method of public transit we encounter headed west on the street his school is on. While I swipe the Metrocards the DOE gave us, Alex bolts toward the back of the bus to find a double seat for us. On these rides that are suddenly a part of life, Alex says things like “Baa Baa Black Sheep” and “Look at that beautiful cake.” He says these things in a voice that carries across the passengers.

 

The cake thing is from a “Sesame Street” on YouTube. “David’s coming! Ipad!”

 

David is the young man we pay to spend time with Alex. David is picking Alex up from school tomorrow afternoon. “iPad” is of course the device that Alex spends a lot of time with. “Elevator!” That’s the first button he’ll press when we get home. They all mean something to me but I’m sure they don’t to the other people on the hard plastic city bus seats. I shouldn’t care and I really don’t, and yes you do always have to ride NYC public transit with your shields up. Riding it with Alex, though, makes me a little too eager to use my phasers, too.

 

The bus often waits through lights, and waits at intersections that are green for the city bus ahead to pull out. I roll my eyes. Alex mutters:

 

“Baa baa, black sheep… Look at that bu-ti-fu cake.”

 

Why haven’t teachers spoken out more about the one-third? How did families like mine and kids like Alex become numbers despite decades of society telling itself it cares? I guess money’s on the line, the cracks are widening. Good thing that Alex is learning how to ride the subway and the bus.