"The Child Study Center at New York University will halt an advertising campaign aimed at raising awareness of children's mental and neurological disorders after the effort drew a strongly negative reaction. The two-week-old campaign ... used the device of ransom notes to deliver ominous messages concerning disorders like autism, depression, bulimia, and attention-deficit hyperactivity disorder."
This was in the Times a couple of weeks ago. The ads are gone now from the sides of New York buses and phone kiosks, but before they were ripped down I walked right by the bulimia ad. "We have your daughter," it read, in that wacky newsclip font that always sort of made at least one part of kidnapping look fun. "Hey, that's pretty cool," I thought. "But then, I don't know anyone with bulimia."
Continued the Times, "The note about autism, for example, read: 'We have your son. We will make sure he will no longer be able to care for himself or interact socially as long as he lives.' Advocates for children with autism and for other special-needs children said the ads reinforced negative stereotypes." Organizers of the campaign said they got thousands of calls and e-mails, most bitching, but one from a woman crying and claiming that the ads said exactly what she felt most of the time about her child.
"It's not clear what the ads wanted you to do," said Jill. True, and though they may have made a better art project, the ads did seem to voice much of what I live with, projecting to me anyway something I don't see much in advertising: truth.
In bad taste? "It made people uncomfortable," my boss Howard surmised. "If you make people uncomfortable and there's change, that's good. But if you make people uncomfortable and they're just uncomfortable, that's not good."
Alex's autism makes me uncomfortable, like when he screeches on a bus or tries to run into doorman buildings in which we do not live. When I wonder if he's going to die muttering on a park bench 40 years from now, and when Jill tells me that I can "no longer say that to his mother," and when I'm ashamed because I realize that of course I can't say that to his mother.
When I can't relax at a New Year's Eve party at Aunt Julie's, chat with other guests and get quickly drunk because I feel I must keep one eye peeled for whatever Alex is getting into, such as pushing against the screen of Julie's flat-screen TV. When I see him making "tremendous progress" in 4th grade - and he is! - as defined by writing without help on the chalkboard, slowly counting the days of a month on a brightly colored Velcro calendar, and in general doing things, I try to not remind myself, that I might see typically developing students doing in a preschool. When I see him blast "Elmo" through religious family dinners, rip open Ned's birthday presents, or walk into our living room naked in front of our neighbor's two little girls.
The girls don't mind, I'm assured. The family plows ahead with the Seder, speaking over Elmo's observations about hands or the Wild Wild West. "Jeff, there's nothing here he can hurt!" Julie assures me. And there isn't. Well, one flat-screen TV.
People not minding my son just makes me uncomfortable. I don't know how to change that. (January 2008)
For a seemingly endless number of months/years, Alex has slept poorly. Abed by 8:30, yet popping up two or three times a night, often getting up for the day as early as 3:30. Jill and I took our now-fabled turns - "Night Duty" - escorting him back to bed. About the best we could hope for at one point was that one of us would return him to bed and lay down with him and maybe give him a swallow of Benedryl or, lately, one of Jill's homeopathic sleeping pills dissolved in water, and listening to him chirp and chatter and giggle for almost two hours before both he and the unfortunate one of us on Night Duty would doze off for a couple of hours until it was time to rouse him for the school bus.
"When you go to bed tonight, set your alarm for about two in the morning," I used to tell people. "Get up when it goes off, walk into another room of your house, and stay there for at least half an hour. When you come back to bed, set your alarm for about four, and when it goes off do the whole thing again. Try that for three or four nights. Then you'll have an idea how we're feeling."
He would wake up and start to giggle if in a good mood. If in a bad mood, he'd demand pretzels and Elmo in the deep dark.
"Pretzels! Watch 'Elmo'!"
"Alex, go to sleep!"
If we were lucky, he'd sleep until about 4:30 - an hour I suddenly began to find civilized enough to start my day - when he would get up, turn on all the living room lights, shut our bedroom door (though not Ned's), get himself a bowl of pretzels or Goldfish and slide in an Elmo DVD. We'd find him there when we got up around six.
Dare we say that lately, however, Alex's sleep has been more normal. We've upped his bedtime Melatonin to two capsules, and coupled with his Topomax it actually seems to make him sleep through.
"Maybe he also understands finally that we're not going to stay in there with him," says Jill, and it's true. Though one of us still lays down with Alex when he goes to sleep - as much out of exhaustion as out of parental love - we've stopped climbing into bed with him in the middle of the night.
There are still rough nights. "There was a certain amount of laughing," Jill reported this morning. She had Night Duty last night; this morning, when I woke Alex for the school bus I found the cup of her pill and the water empty. "But I took him back to bed and he settled right back down," she adds.
Still, the months of busted sleep have taken their toll. "Tonight I'm prepared," Jill announced last night as she came to bed carrying a plastic cup of water and one of her pills. "Alex may not wake up every night anymore," she said, "but I still do."
"So who has Night Duty to care for you?" I asked. "Maybe Alex should. Maybe you should run in there in the middle of the night and wake himup!"
"'Alex!'" she replied. "'Chocolate! Watch "Jane Austen" on "Masterpiece Theatre!"'"
About the closest Jill has come lately to being up for some member of our family was the other night, after an evening on the town when I'd downed two martinis on top of four glasses of white wine and she just refused to let me pass out in peace. She claims I said things from the comfortable, comfortable bed like "Did you ever try to stop a building from falling down?" and "You know those back molars? Cucumber goards! Like Indiana Jones!" and "Baaaaa!"
"You sounded so exasperated, so sure of yourself," she said far too loudly the next morning. "You sounded like you had such authority!" Comes from getting enough sleep. (February 2008)
Hey! Alex made a construction-paper Easter Egg. We hung it on a string from the knob of my front closet door. One morning as we were headed for the school bus Alex was fiddling with the egg and the string broke. Intending only to help, I picked it off the floor and threw it away. Right in front of Alex.
"Hey!" he barked. "Hey HEY!"
"What'd you expect?" Jill said. "You threw it away right in front of him." He yanked it out of the wastebasket and hung it back on the door.
"Hey!"
What Would Jane Say? We've been taking Alex to a music class. I like this class: It's nice to be in a room with other parents and not stand out at all. The class is free, and it should be fun - the "Hokey Pokey" and all that - but it's held in a play space used for other classes for autistic kids, and in addition to the keyboard and the bongos there sits, scattered around the music area, toy grocery carts and dollhouses. Every class, Alex would like to ditch the "Hokey Pokey" and get his hands on the carts and houses. As I hold him on my knee and place the drumsticks in his hand to make beautiful music, he squirms and wriggles and thrusts his arms up and demands, "House! Cart!"
My method of controlling him when he gets like this is foolproof: I pass him off to Jill. He settles on her lap and continues squirming. Just as I'm getting ready to bag the class for this week, Jill says to Alex, "Alex, sit still. What would Jane say?" Alex goes still. Jane is his teacher.
It's encouraging that at age 10 Alex is listening more to the authority of the real world than to the authority of his parents. I'm so tickled I send a note to Jane next morning. "We do the same thing here in school to get him to calm down," she writes back, "except we say, 'What would mom and dad say?'"
On the rug, Alex! About six months ago, we finally got rid of the boys' small dining table and chairs. We (mostly Jill, assisted by my promise to help her "sometime") moved the hutch over against the wall and the red chair against the other wall under the mirror. This opened up the living room/dining room area tremendously and lent the whole room an airy ambiance until Alex decided that the emptied path of hardwood floor was the perfect place to arrange his toys.
The three barns; the white Hess 16-wheeler grandpa gave him; all of the plastic giraffes, paraded by order of size and color; the toy Hess fire truck from grandpa; the toy fire helmet; the crash helmet Alex wears while on his scooter; the Hess helicopter and little motorcycles from grandpa (I've got to buy grandpa something from Hess next holidays); two or three books and a bowl of Utz Extra-Dark pretzels. The trucks sit together, the barns sit together. Beside the fire truck sits the fire helmet, and beside both of those sits the toy plastic Dalmatian Alex picked up a couple of weeks ago.
The display stretches from in front of the TV nearly to the dining room table. "Alex, toys away!"
He picks up the fire engine and puts on the fire helmet and actually does take one step toward his bedroom. But he's only waiting until we turn our back to set both the toys back down in front of the TV. After the first several dozen times, I'm no longer fooled by this.
"Alex, toys away!"
He puts them away, making several trips, and I think, "Great - got what I wanted and I tired him out!" I'm in the kitchen to help Jill with dinner or something no more than a few moments, of course, when I come back to see he's hauled out all the toys again, and added the toy plastic gorilla and the toy plastic polar bear, head to head on the floor near the hutch and apparently deep in conversation.
"Alex, this isn't fair! You don't own all of the living room!" Then I look at the rug that sits beneath just our coffee table. "Alex," I say, "you can put the toys on the rug. Just on the rug."
"On the rug," he says as he sets about arranging them there. Good thing. We wouldn't want to find out what Jane would say. (March 2008)
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