« December 2012 »
S M T W T F S
1
2 3 4 5 6 7 8
9 10 11 12 13 14 15
16 17 18 19 20 21 22
23 24 25 26 27 28 29
30 31
You are not logged in. Log in
Entries by Topic
All topics  «
autism
Blog Tools
Edit your Blog
Build a Blog
RSS Feed
View Profile
Books 'n' Blogs
Alex the Boy on Amazon
Alex: The Fathering of a Preemie on Amazon
Other Blogs and Books
Alex the Boy from the publisher
E-books
Alex: The Fathering of a Preemie
Alex: The Fathering of a Preemie (Nook)
JeffsLife
Monday, 31 December 2012
Camping Again

This will be the longest break Alex has had at this camp, in fact the longest sleep-away he's had except for summer camp, and this is in cold weather. He is to go on a morning when the forecast – which will turn out to be accurate – calls for dark, cold, cloudy, misty. This will be more like the winter camps of the Civil War, minus the dysentery.

I pack him the day before like I have dozens of days before, plucking out the Ts and the socks and the khakis and scrawling STIMPSON on them in some hidden place with the seriously black marker. Later, on the night before, Alex picks his stuff out the suitcase sort of like the way a reporter I worked with once put stuff back into stories that editors had removed. (I say what the editor did: “Cut that out!”

We assemble for the camp bus at a community center on the dark, cloudy and misty West Side. There’s a long wait for the bus to board. “My daughter started crying on the subway,” one mom tells me. Alex doesn’t cry – he’s a vet of this camp now – but he does keep saying “Take a shower! Take a shower!” I’m guessing they have showers and not baths at this camp. I have to guess, of course, because he can’t tell me. I do imagine what he does there, though: Run around, turn light switches on and off in every cabin. 

I write the camp people a note. “He takes his 2 morning and evening Topomax tablets crushed into powder in the metal cup and dissolved in water. Alex is very picky eater. I’m sending some pretzels and cookies. He likes chocolate milk and some strawberry or cherry yogurt, and sliced hot dogs (I am sending hot dogs, too). He has eaten some berries, watermelon, and corn on the cob. ANYthing you can get him to eat, using a lot of praise and especially if others around him are eating the same thing, would be great.”

When I get home I open the freezer and see that forgot to send his Hebrew Nationals. I always forget something. Last summer, despite Alex's own warning over the suitcase, I forgot to send the pajama bottoms he sleeps in. 

When it’s time to board the bus, he bounds up the stairs. He bounded up these same bus steps when he was eight, too, saying, when Jill asked for a kiss goodbye, “Kiss goodbye!” But it didn’t work out back then – bolting, crying – so we held off for a few years and sent him anew, and he’s asked for it since. “Camp, camp?” he’ll say in the days before boarding the bus. “Take a shower.” Who doesn't want to get away from his parents when he's 14?


Posted by Jeff Stimpson at 6:06 PM EST
Updated: Monday, 31 December 2012 6:07 PM EST
Friday, 14 December 2012
Easy, Easy

What is it with this cough? Raspy and from Alex’s throat, and sometimes he’s just fine and other times – like when going from a warm place to a cold place or vice-versa – he doubles over and his face gets red as he holds his hand over his mouth and makes a sound like a vacuum. I feel like I felt when was a baby in the hospital for a year.

“Easy, Alex, easy…”

“I’m just concerned,” says Danny, the guy we pay to spend a few hours with Alex every week. “This has been three months.”

Two, anyway. I remember it was the late-October Saturday before Alex’s rec program started for the school year when I heard Alex over on the couch and thought, Good thing he doesn’t have a Saturday program tomorrow because he wouldn’t make it, anyway. I’m concerned, too.

Theories have flown around. We took Alex to a pulmonologist who ran down his systematized checklist to determine, basically, that Alex needed tea and honey and chicken soup. Before you say Quack!, remember that during that hospital year I would’ve really, really liked to run across a doctor who picked chicken soup and tea over a ventilator.

Part of the problem is probably the autism. When you have to cough, doesn’t it make sense to cough absolutely as hard as you can? Yes and no, sense tells us. Alex doesn’t drum along with that sense any more than when he rings the bell for trick-or-treat, someone opens the door and he barges into their apartment to have a look around. Or like when he had a stomach bug a week ago and was thirsty all the time. Don’t you drink water when you’re thirsty? Water kind of tends to make you vomit more being a leap Alex doesn’t seem to want to make.

Jill, who’s had her own cough, came up with the idea that drinking a cocktail of honey, cider vinegar and water would help. I tipped it into Alex’s mouth and marveled at the sense in front of my eyes as his mouth simply opened and the stuff trickled into the sink. Something crappy in your mouth? Open your mouth and it will fall out! Like I said once, makes perfect sense if you stop to look at it from Alex’s point of view.

The woman who comes twice a week from the agency, and has done so most of Alex’s life, was the first to say “Easy…” to him when he doubled over. “Easy,” we tell Alex now when he shakes with the cough. “Easy.”

“Easy,” Alex says.

I pinch his nose and hold his shoulder, which seems to bring him back. I tell Danny I had that change-of-temperature and coughing thing when I was a kid, about the signs of sure sickness in Alex that Danny hasn’t seen yet, like the dark lines under the eyes. I know what they’d do: a chest Xray, a barium swallow, a camera snaked down the throat. All mean sedation, a new level, a new animal – like too much professional care, a whole different animal of medicine when it comes to Alex and people like him.


Posted by Jeff Stimpson at 6:09 PM EST
Updated: Friday, 14 December 2012 6:12 PM EST
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

Newer | Latest | Older