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JeffsLife
Sunday, 2 December 2012
The New Normal

For years Alex has scored “low” on evaluations. Low verbal. Low social. Low attention. Low, low, low and more low. Low against whom?

“They score him low against normal kids,” says Dan (not his real name), a talented young man we pay cash to spend a few hours with Alex each weekend. “Of course he’s not going to score high against those kids. Of course there are many things that Alex isn’t going to have in his life. He’s not being measured against the kids he’s like.”

I wouldn’t have to take the kids that Alex gets measured against off their schoolbus by the hand, afternoon after afternoon, not if they were 14 and shaving. (In Manhattan, they’d be getting into trouble and doing crap I wouldn’t have dreamed of when I was growing up in Maine.) “Did you have a good day at school, Alex?”

“Good day at school!” he says, dashing ahead of me into the building.

Jill and Ned and I wouldn’t have an alarm on our front door, installed after Alex started bolting into other people’s apartments and after we watched a local locksmith stare at us like the RCA Victor dog when we told him we wanted a lock installed to keep someone in an apartment. The new normal is Chips Ahoy and Utz Extra Dark Specials tossed into the cart as if they were meat and milk; they come to rest next to the rest of the real food for me, Jill, Ned and Toast.

He has talents. He once the length of our apartment carrying a glass cake holder without so much as a chip. Years ago, he figured out you can stand on the open door of the dishwasher to reach the can of Pringles. At big family dinners, he sets the table with the handles of the coffee cups all facing the same direction. “If he worked here, he’d have the labels of all the bottles facing the same way in about an hour,” I told the lady at the wine store. But he’d dash out the back door long before that hour was past, and though he probably wouldn’t smash bottles on the floor he would yank himself away from his supervisor and lunge off saying “No no!”

At those same big family dinners he scurried around and around the table with iPad in hand, never sitting and never eating. He lurches back and forth in the middle of the living room while guests – just decent people, after all, caught in this moment – try not to look at Alex while I try not to look at them. He has the presence of a cat but he brings with him and to me that hole in the heart that comes with having a child – and child he’ll probably remain, what one reader once said, of her own son, “My 30-year-old five year old.”

Still they continue to compare him to typical 14-year-olds, oblivious it appears to the things in his life that he won’t have. They look Alex over and make the comparison in their own minds because it’s all they know how to do yet, and until they how to do something else Alex will never be normal.


Posted by Jeff Stimpson at 2:14 PM EST
Updated: Sunday, 2 December 2012 2:14 PM EST
Saturday, 17 November 2012
Angry

Trouble started at a quarter to eight on the morning when Alex’s bus called and said they’d be there in five minutes. That’s early; that means we don’t have as much time on the elevator ride down to the street to punch extra buttons and visits all the floors Alex wants to visit.

He shoved by me and went for the buttons. I gave him 8. I gave him 7. He moved to punch three. “Alex, we have to catch a bus! The bus is waiting!”

“Want 3!” We slide down past 7 and I can see in his face that he’s realized that 3 isn’t going to happen. He flattens himself against the side of the elevator. I take his hand to guide him back into the world and feel the steel that is suddenly trying to move my 14-year-old autistic son anywhere he doesn’t want to go.

When Jill and I were contemplating kids, a co-worker said to us, “I have a lot of traits I wouldn’t want to pass on to my kids!” One of my traits, I’m afraid, is anger.

And now – maybe God willing, it’s just the hormones as he turns into a young man -- Alex flails and sputters before sleep. Bites his arm when we say “no,” yanks me back when I tell him he has to go somewhere that anybody so-called normal would understand you just have go sometimes.

He made me drag him from the elevator like a big dog that doesn’t want to go for a walk, braced his leg against his father all along the glassy floor of the lobby while the security guard must have looked on (I don’t know because I didn’t even glance over at the desk). Alex bites his own arm. He bites my finger when I try to control him; the pain shoots white up my arm. (“Alex you can’t always do what you want when you want!” I told him, telling myself at the same time that I was being a reasonable dad – more reasonable than some dads I’ve heard of, that’s for fuck’s sure – that I was being a reasonable dad in a nightmare.

Alex has been getting on school buses for a decade, but of course he hasn’t been a teenager for a decade. He went up two of the three steps of the bus and spun to try to muscle past the matron. “He was like this yesterday,” the driver says. I mumble something; I don’t remember what. Maybe I should remember but I don’t. The bus doors slide shut. All day along I expect a call from school.

One never comes. The bus arrives at 4:15 p.m. “He tried to bite,” the driver tells me through the sliding doors. Bite the driver?! Bite the matron?! “No, not me,” says the driver. “He tried to bite her. Tried to bite himself. Kept banging the window.”

“I’m sorry,” I say. “I’ll talk to him.” When we leave the bus to walk inside, the matron blows him a kiss. “Alex,” says the driver out the window as he pulls away, “we’ll see you Monday.” This driver has never said See you Monday.

I’m coming to see the many things that Alex will never be. I hope “angry” is one of them.


Posted by Jeff Stimpson at 4:57 PM EST
Updated: Saturday, 17 November 2012 5:01 PM EST
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

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