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JeffsLife
Monday, 12 November 2012
Tricks

Last year Alex was content to answer the door. We wiggled when dropping the tiny Baby Ruths and Snickers into the bags and orange plastic bins of kids who were suddenly much, much shorter than Alex.

But when he answers the first few this Halloween I have to hold Alex– and not by the wrist anymore, either, but firm and hard by the shoulder, hard enough to make my 50-year-old shoulder ache, to keep him from bolting after the trick-or-treaters who come to our door and who seem even smaller than last year. One is a sweet little girl from the first floor who has Downs Syndrome and who throws back our Snyder’s ‘Ween pack of pretzels (I thought kids would like these!) in favor of some mini Milky Ways.

Alex doesn’t answer the door. He sits at the dining room table. “Halloween!” he keeps saying. “Halloween! Halloween!” Once again my sense of progress twists as I turn to Jill and say that Alex would like to go trick-or-treating. Is it wrong for someone who shaves to go trick or treating? Alex asks for little and half the time when he does ask we can’t understand what he’s saying. Jill says take him and I grab Ned’s toxic zombie mask from last year. “Okay Alex, let’s go.” All we have for him is a small paper Container Store shopping bag.

We take the stairs floor to floor; Alex knows the number of each floor before we reach the stairwell to walk down. Each floor he counts, pulling up his toxic mask on the stairs to not trip. “Say, ‘Trick or treat!’ Alex,” I have to tell him at almost each door. “No,” I say, reaching in to grab his outstretched arm, “don’t turn on their lights!” We finish with one tower of our apartment building and head to the elevators of the other tower. I really thought Alex would want to stop at one tower – and I sort of thought he didn’t know where the other tower was.

In the other tower’s elevator, we head immediately to the top floor. Most other times when we ride the elevator in this building – end of the day, morning to catch the schoolbus – Alex punches extra buttons to stop at extra floors. On his Halloween he punches no extra buttons. “Hi Alex!” they say at door after door. Guess they know him from his bolting. “Say, ‘Thank you,’ Alex,” I tell him at door after door.

“Thank you,” he says. “ ‘bye!” In the Container Store bag Alex collects a heap of candy that he will never eat.


Posted by Jeff Stimpson at 4:00 PM EST
Updated: Monday, 12 November 2012 4:02 PM EST
Monday, 5 November 2012
Worse

 

People have been emailing and calling to see how we did. We did okay. The lights flickered four times on that night and the net went out for five minutes. Our modem and new router rebooted themselves. Over the following few days, we did the same.

 

The boys were home, Alex bored over his iPad as he wrestled with a naggy cough and Ned bored just in general. Could have been worse.

 

A few miles in any direction from this apartment people were not bored. Seashore Staten Island a wreck; a hundred homes leveled by a fire in coastal Queens that firefighters could not reach at the height of Sandy; a million or so without electricity, for four cold nights almost half of them in Manhattan south of 39th street. On about three of those nights I remembered to think about all the places I knew south of 39th Street that were suddenly dark.

 

“The kids are home from school for a week,” I tell my sister in Arizona.

 

“Ugh,” she replied. She had a lot of kids.

 

We pick up. “Ned,” says Jill, “check the drawers in your room and see if there’s something we can put in a bag!” The call went out for stuff that was warm – unseasonably cold temps expected later this week, in addition to a Northeaster slated to hit the wreck that used to be seashore Staten Island. All we find is jeans and khakis and an old sweater.

 

“Thank you,” says the lady at the donation station.

 

I email another lady who, when the world was normal, ran a great group for families who live with autism. “Is there something we can do?” I have to send a message on Facebook because she has no power. (When the World Was Normal Department: How did I expect her to get a message at all if the power’s off?)

 

During the week (Ugh!) home, Alex rips a bigger hole in the screen of our living room window and, when we’re not looking, tosses out a plastic pig. He bolts from our apartment (we catch him). He develops a wracking cough that makes people in the street stare at us with wide whatthefuck eyes.

 

After Katrina, I wrote about how Alex would have been treated in the Superdome when it started to come apart. Now the coming apart is happening closer to home and still all I think about is how far south it is on this island – 39th is miles from here – and how I have to remember to plug in the iPad at night.

 

People like Alex and his parents were out there in those four dark nights, and are still out there. “If it had just been me,” I told Jill over a beer or three, “I would’ve taken a notebook and just headed south of 39th the first night!” But there was Alex to bathe and bed. Later I lay on the bedroom floor near him playing “Angry Birds” while he fell mercifully asleep and I looked over the screen of the iPad at the yellow light in the hallway and tried not to think about how it could have been worse.


Posted by Jeff Stimpson at 4:48 PM EST
Updated: Monday, 5 November 2012 4:51 PM EST
Tuesday, 30 October 2012
Storm Shop

(This guest essay comes from Jill.)
 
How do we amuse ourselves ahead of a storm? 

Shop, apparently. Since Jeff and Ned are in a bar watching the Redskins tank, Alex and I go to an area rich with possiblity: Michael’s, Whole Foods, Duane Reade, TJ Maxx, Modells and more and more and more. Everything we want -- steel-cut oatmeal, liquid hand soap, detailed resin animals -- awaits. 

The city is anxious and everyone is scanning the skies while everything shuts down both quickly and slowly. Shelves empty, signs are posted. One store has spaghetti, but only whole wheat, and Barilla wildly overpriced at $2.89 a box. A man in his 20s is fixated on canned soup. At Home Goods (discounted throw pillows, Le Creuset and maple syrup in maple-leaf-shaped jars) there are no lines. 

We wait on line to get into Whole Foods (a line! to get into a New York City grocery store!) and since Alex isn’t that great about waiting, I ask the woman in front of us to hold our place. Sizing up Alex as disabled, she says sweetly and immediately that of course she’ll hold our place for us, and we go over to ask how long the wait will be. We’re told two to three minutes, so we go back, tell the nice woman (who even before she hears two to three minutes says we can go in front of her, an offer I wave away, with thanks). We only (or I only) wanted oatmeal. And some Japanese lanterns (those orange autumny flower things) I thought would be nice and bring some festive feeling to our storm home. 

They had the oatmeal.We waited on another little line to weigh it and mark it after large New York guy (message: the most important thing in the world is me and this plastic container of  pitted dates, and if there’s some woman with a disabled kid, who cares?) and re-tag it because he doesn’t have the right code for his dried pitted dates (yes, I have plenty of time to read what he’s buying) and that takes a few minutes, and Alex is getting restless. All around me I see watchful faces - a little tense, a little excited, a little hopeful. The storm! It’s only October - not even Halloween yet - and yet we are gearing up for a homebound day.

I thought it would be nice to get a storm day treat for Alex. When I went to a grocery store with Ned the day before, he chose Reese’s Puffs cereal (chocolate peanut butter cereal! It’s the fall of Rome, my mother would have said), orange juice, rice cakes, Little Debby s’mores, strawberries and Edy’s limited edition pumpkin ice cream. We got the cereal and the ice cream. I didn’t tell Alex, but I started looking around for the Cape Cod oyster crackers. 

The parents are tense, scanning: where’s the orange juice? They are on what a friend of a friend calls the french toast alert: eggs, bread, milk! We’ll hole up, we’ll have a storm day at home with french toast. The kids look excited but a little alarmed. They know there’s no school tomorrow, but they also know their parents are crabby, worried, filled with tension. They’re not used to just hanging. getting drunk and listening to rock and roll is not what these people -- adults -- do. 

To make a long and probably boring story short, we don’t buy our oatmeal and Japanese lanterns. We get on the back of the line (the express line) and realize it’s going to take so long that it will just be a misery to wait on. While I keep saying "we" and I tell Alex things I’m thinking and things I’m observing and what I think we should do, it is not a mutual decision. It is my decision for the two of us. 

Alex has a bad asthma-induced cough that we can’t seem to control. We have an inhaler with us, but since you’re really not supposed to use it more than every few hours I’m with a coughing boy who people are eyeing with alarm. Finally I hit on the brilliant idea of putting the inhaler in his mouth, not pressing the button, and patting him, while saying loudly, ‘Here, this should help your asthma!”

While we’re waiting for a cab because I cannot face getting on a bus with him and the cough, he’s doubled over, coughing. From across the intersection, I can see available cabs, but I’m afraid they’re looking at Alex and thinking he’s going to spill germs all over their cabs, or vomit. Whatever. I’m thinking they won’t stop for us. 

A cab starts to turn, then stops in front of us. And the driver turns around and -- I figure he’s going to demand to know Alex’s health status, but he says to Alex - his face lit with happiness and light and love - "How are you, my brother? How are you, how are you this beautiful day?" I can’t tell what his home country is, but it’s probably usually hot and sunny like his mood.

He declares how happy he is to be alive, and he says over and over how joyful life is, and how even if he has one minute to live, he will be thankful and glad for that minute. 

I’m reasonably happy at the moment -- emotionally stable -- so instead of making me burst into tears or even making my lip tremble and eyes smart, these declarations make me feel glad to be alive, sitting in a cab with this very happy young man who is so filled with joy and maybe a tiny bit unstrung. 

When he tells me he was very ill for a long time - he has been through many things, a lot of bad things, I nod sympathetically. I had been waiting for him to talk about the flip side. I’m not surprised. “Someone did black magic on me,” he tells us, and I ask where this happened and he says; Africa. So this is fairly unsurprising and I express sympathy and hope that his troubles are over and he takes us home, tells us about his three children (two boys, one girl) and he gets out of the cab (after expressing amazement and joy at the $1.50 tip I give him) and says goodbye to Alex, calling him brother again and me sister. And he shakes my hand. And one of my neighbors is watching, the rich one with the summer house in Rhode Island and the blond son in the private school blazer with a little crest. 

Jeff S. says later, "Did you ever think he’s probably some actor from Flatbush just doing it for the tips or his own amusement?" And I consider this but think no, that black magic thing for 12 years and the nonstop ramble did it for me. I wish I’d given him a bigger tip. He shook my hand, called me "sister" and high-fived my autistic son. 

Posted by Jeff Stimpson at 4:46 PM EDT
Updated: Wednesday, 31 October 2012 8:12 PM EDT
Sunday, 28 October 2012
Sandy


On Saturday night they announce that I may be trapped in my apartment with both my kids for two days of cancelled school. Talk about natural disasters.

 

Sandy is “barreling” up the East Coast, set to “crash” into New Jersey a few hundred miles south of my living room, with a “left hook” sea surge that threatens to flood a lot of Manhattan. “What floor are you on again?” my friend Jon asks from Buffalo (which, unbelievably, will also feel Sandy). Nine, I reply. “Should be just high enough,” he replies, “to hail a passing Coast Guard cutter.”

 

Then I do what doomed the Donner Party: I forget to buy bread. “Jeff, a storm is coming!” Jill informs me. “People buy out everything. What else do we have to get for this stupid storm?” To further embed her in a pissy mood, the organizers of the Pumpkin Sail – pumpkins with candles inside launched on boards in the nearby Harlem Meer – cancel the annual Halloween event. Jill was looking forward to taking pictures and posting them on Instagram.

 

“There’s not going to much left to buy,” says Ned, heading out with Jill. He would’ve been great on the Titanic. “I’m starting to wonder if I’m going to my office on Monday,” says Jill, as the disasters continue.

 

Irene was just 14 months ago and a bust as disasters go. Wind and rain, and I stepped out at noon and found birds looking for food. No bird is going to look for food if a hurricane is coming back. The sea surge stopped about five inches short of flooding South Street Seaport. All of this annoys me: We don’t live in a quaint seaside town where we can walk the beach easily. We live in the hardest Manmade place on earth, trying to scratch out something in the lower middle class. I moved here from Maine so I wouldn’t have to care about the frigging weather.

 

If they do cancel school, maybe we’ll sleep late. Maybe not: Alex has a racking cough that is more or less entering its second week and won’t leave him alone, and I wonder what’ll happen if the power goes out (Batteries!) and leaves the neb machine dead.

 

On Sunday afternoon, as Sandy closes in, Ned and I go to a bar – he’s spent a surprising amount of time in a bar for an 11-year-old – watching the Redskins’ loss to the Steelers. With Ned, I had the best time ever at a loss – at least until halftime, when the news buttinskis confirmed that NYC public schools will be closed on Monday. Ned and I stop in the wine store on the walk home; it’s quaint to stock up on bottled water and milk and batteries and yadda yadda yadda, but we have kids.

 


Posted by Jeff Stimpson at 6:16 PM EDT
Updated: Sunday, 28 October 2012 6:17 PM EDT
Saturday, 13 October 2012
The Good Store

I’ve been working with Alex on the sidewalk or in stores in those moments when he sees a group of people approaching and his waves his hand and says, “Bye! Bye!” What’s going on with that? “No Alex,” I tell him. “Say ‘hello.’ Say ‘good bye’ when they leave...” He’ll be 15 in June and sort of four for the rest of his life, and I feel I have to talk to him like this.

So Alex and Ned and I are in line at the neighborhood grocery store. “Alex,” I say, “help me put stuff on the belt.” The belt doesn’t work in this store for some reason, but the point is to get him to grasp something in his hand and put it somewhere in a productive way. But he’s staring off to the side and I’m thinking there’s another bolt to the laundry aisle coming when I hear a deep squawk.

This is the same store where Alex and I had a run-in with what now I think was another autistic boy. He wouldn’t get out of Alex’s way; he had a Mohawk and was eating a hamburger in a grocery store in the middle of the afternoon, and I just didn’t have a good feeling about him being nice to my son.

This time in the store, however, I see a young girl with heavy eyebrows over by the tuna; she stands behind a cart with another, 
older woman, and her movements are jerky. The other woman is glancing around.

I did some work in this neighborhood for the New York State Department of People Like Alex, and I know there are homes in this 
area. I interviewed one couple who was going to get married. The apartments were nicer than anything I had in New York City in 
my early years: hardwood floors, white walls, gleaming appliances.

The young woman with the eyebrows and who let out the squawk comes right up to me and Ned and Alex. Ned and I see her but Alex doesn’t seem to. “Papi!” she says. She’s wearing a cream-colored coat, and she holds out her hand for me to shake her palm feels firm but her fingers soft, like all the muscles aren’t being told what to do. She knew me as a dad. Alex’s? Hers?

“Nice to meet you!” I say. I used to say things like this to people like this with elevated, fake enthusiasm. Not anymore. Someone like Alex is here. 

The mom’s by the cart. “I’m so sorry, mister,” she says. I squint and purse my lips and shake my head and even as I do I know the expression says not a tenth of what I’d like to say. “Oh no. No. This is Alex.” I present him like a passport. He’s that way, too.

“Alex, now! They’re leaving. Now say, ‘Bye.’”

BYE! Wave wave.

Alex and Ned and I leave the store. “That was nice,” Ned says.  Yes. “I’ve had some nice encounters in that store,” I tell him. 

“Some people have come up to me and just said, ‘How old is he?’ You can tell they work with someone like Alex.”

I tell Ned about the work I did in this neighborhood. Should I even say this to a kid who’s just 11? “Maybe Alex can live in one of those places,” Ned says. “That’d be close by.”

“Well, no. I think they’re a little more high functioning than Alex is.” 

“What do you mean?”

I mean this is a good store in a poor neighborhood, Ned, and you should learn right now that probably only poor people are ever going to work with your brother. I don’t tell him this, of course, because it’s my job to protect him and because, when you come right down to it, I don’t know what I mean.


Posted by Jeff Stimpson at 11:16 AM EDT
Updated: Saturday, 13 October 2012 11:50 AM EDT

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