Costs of Living
Pricey raising my son Alex, who’s 15 and on the spectrum. “There are hidden costs,” says my wife Jill, “to having a kid like Alex.”
The iPad. My wife Jill bought this first-generation beater ($190 on ebay) for Alex months ago, and was smart enough to also spring for a thick black plastic shield (a “Defender,” $30 then and still about that on ebay). It keeps the iPad screen off our hardwood when Alex – who runs while balancing the iPad as if waitering in a busy Pizza Hut –drops the iPad screen-down with a smack. “Alex, don’t drop that!” Finally the iPad meets our hardwood enough to put a mountain range of hairline cracks across the screen. He brings it to me. “iPad!” he proclaims. The screen is black. “Alex, what do you want me to do?” Slide to Power Off the thing reads in a red box. Jill taught me to, at these moments, press the power button and the button on the side simultaneously until the screen goes black and the bitten apple appears. Then I press two more buttons, resuscitating it yet again, and hand it back to Alex. He goes away to punch buttons. Amazing what Apple has done in our world.
Leggings. Alex calls them “Pajamas! Pajamas!” They’re girls’ tights for dance class, really, and I pick them up at the Forever 21 two for $10. Alex rips both pair in less than a week, looking down when he’s bored and setting his fingers to work. Then comes a sound like skin peeling after a bad sunburn and I see a rope of legging dangling from his hand. Why does he do this? “I can’t imagine,” his teacher said once. “Must be something to do with sensation through his fingertips.” One day I find the Forever 21 price has dipped to two for $7.50. Who says corporate retail is all evil? But do the incredibly young staff women of Forever 21 wonder why I’m buying pair after pair of leggings, week after week, in the girls’ department?
Chicken nuggets. He used to like McDonald’s nuggets, about $8 in Manhattan when you get them with the meal. He now prefers Popeye’s 3-Piece Tender Combo, $6.39 (I usually eat the fries). For years it was hot dogs at dinner, Hebrew Nationals, $4.50 for a pack of seven (less on sale). These days Alex drinks a glass or two of chocolate milk a day (Ovaltine: $4.99 for a 12-ounce tub) and munches Chips Ahoy (Original, about $5, but $3 on sale). His Utz Extra Dark Special pretzels run $3.50, but almost every store sells for them for $2.99 though the bag still says $3.50. Isn’t that strange?). “Pretzels!” he demands. “Cook-EEs!” Over time he’s nibbled blueberries, watermelon (he tried to reassemble one we sliced up…), and most recently fried breaded eggplant. He kicked chocolate, bacon and yogurt a long time ago. Food for him is cheaper, overall, than a steak dinner. I’ll give $500 to the first person who gets him to eat a steak dinner.
The plumber. One day we saw that the swirl didn’t go all the way down to the final gurgle in the bowl. Jill and I bet that Alex had something to do with this and set it up with the Russian super. He sent up a guy up who took a Medieval-looking pole and rammed and rammed. No good. “If they can snake it, fine,” said the super. “If they have to take the bowl off the floor, is more.” The guys from the building’s plumber came in. They did bolt the whole toilet; they flipped it over and reached in. Out came one of Alex’s wooden dolls, and they placed it on the white surface of our flipped-over toilet bowl and snapped pictures with a flash. “Makes a good story,” said the plumber who earlier had told me he makes $400 an hour. Does it make a good story? You think I don’t know what you’re doing? Have any idea what I’ve seen? How that wooden thing wound up down my toilet bowl, you turd?A few months later, the bill arrives. “Just pay it,” Jill says.
Paper towels: We need these when Alex pisses across the bathroom floor in the morning. At Costco, $18 for a big bunch.
Oven door: The glass runs us some about $200 after Alex stands on it one afternoon and shatters it. “Who was watching him?” asked one of Jill’s old friends. “Weren’t you watching him? Well done!” Jill still talks about her friend saying that.
The door alarms: We scrambled for answers after Alex started bolting from our apartment. In a hardware store we bought three white plastic doorknob covers they make for babies (babies, for Christ’s Sake; Alex is shaving.). Aunt Julie suggested a combination lock. Ideal, but we checked and it’s against NYC fire regulations. “You want a what?” the locksmith said when we asked for a lock that could be installed backwards. He figured, after some head-scratching, that a combo lock wouldn’t work that way – bolt goes into the door jam the wrong way. We wound up with little white plastic alarms, $6 or $7 each, that run on batteries and stick on the door and jam. We used to switch them on every night and off every morning before opening the door – and prayed that Alex didn’t notice how to turn the alarm off. The sound was piercing and made him giggle.
The childcare off the books: Alex still can’t be left alone. Wads of twenties we’ve handed over, no reimbursement from an agency possible because it was all off the books. Lately, about stuff we have sought reimbursement for, like clothes, “We’ve run out of funds for this fiscal year,” the agencies say. Except Tom in the cluttered, small office reserved for those who work with people like me and my son. Tom has been in the service of special-needs families since before JFK, and he reaches into his chipped old desk and draws out form after form. “Edward I. Koch,” it reads the corner of one form, the “a” and “o” filled in by generations of Xeroxing. “Mayor of New York.”
Goo Gone: $6 for an 8-oz. bottle. “He writes on furniture when he’s 15, Jeff!” Jill says. “He writes on the wall! Pencil doesn’t come off!” Maybe it does. Maybe it doesn’t. We painted the apartment ourselves to save money.
The busted and lost sleep, the visions of a park bench 40 years from now: Dreams cost nothing.
More eating: “Cheos,” Alex says. “Char-oos.”
Charoos? I remember the bag in the garbage from when our agency res-hab worker (no charge!) was here the other night. He means “Chee-tos.”
They say always try to teach. “Chee-“ I say slowly.
“Cheah-“
“Chee-TOs!”
“Chee-TOs!”
$2.78 to $3.18, depending on the sales. “Cheer-AHs!” Alex says. “Alex,” I reply, “we don’t have any right now. We’ll buy you some tomorrow.”
Posted by Jeff Stimpson
at 7:25 PM EDT
Updated: Thursday, 8 August 2013 7:27 PM EDT