Ned has playdates. Alex has programs. Ned often disappears for hours. Alex watches TV in our living room, and as I glance over and watch him watching "Arthur" or "Elmo" I think, Well, his life outside here is in his programs. They love him there, too.
Aunt Julie has warned us not to keep telling Ned his life is bad, but I can't resist asking him if he ever thinks about how often he has playdates, and that Alex doesn't have them. "Alex has friend problems," Ned says. "I've told my class that."
I ask him what his class said. "They said, 'Oh my gosh!'" Ned reports. "I didn't respond to that."
Ned plays with other boys in the building, often Sandy or Bobby (not their real names). Both boys have cool video games, pets, and easily-duped babysitters and parents. "Ned is so well-behaved!" they tell us when we pick him up. "He's welcome anytime!" And I'm sure he is. Sometimes, when he leaves for a playdate in the afternoon, Alex stands over by the TV and watches him go.
Week after next, Ned is going to Stuart's birthday party, a Mets game at Shea. On that Saturday, Alex will be in his recreation program for special-needs kids. Jill and I will be deflating in the quiet of the house, wishing both boys were in college.
Both boys may never be in college, but we know Alex knows about Ned and playdates. Recently, Ned and Jill went to Houston for a family birthday party, a sort of ultimate playdate. They were gone three days; Alex didn't ask for them once, but he refused to look at Jill when she came back, either. He knows.
We don't have Alex shackled to "Arthur." We just can't figure out what kind of playdate he'd have. He's not turning into too much of a party guy. "Like if I had a party, Alex might embarrass me," Ned has said, sounding sad but sounding like he's got some rights here, too. "Ned," I replied, "you'll be able to tell a lot about how nice your friends really are by the way they treat Alex." Sounds wise. But I could see Alex embarrass Ned in front of friends. We've had a couple of parties where we had a babysitter take Alex out, and at this year's Seder, when Alex seemed to regress from last year's event and wouldn't turn down the Elmo, I took him out of the apartment. (To be honest, I got a coffee shop bacon cheeseburger out of it.)
On school breaks and weekends Alex does chatter the names of classmates, and his teachers tell us he may be forming friendships. But what kind of party would he have? I wonder. Would Alex smile when he found his schoolmates at the door? I picture half an afternoon of three or four kids wandering an apartment in their own worlds, occasionally paying attention to the games I'm sure Jill will have laid out, their parents sitting on the couch with their backs straight and ready to spring, chatting and trying not to look exhausted.
About the closest Alex has had to a playdate has been when our friend upstairs brings her girls down. They're about the boys' ages. Alex usually watches TV while they're around. So do the girls, memorized even by "Teletubbies" because they don't have a TV in their house. Ned tries, often with success, in getting the girls to go into his and Alex's room and mess up the beds. You really couldn't say Alex plays with them.
"Can Alex can come up to play, too?" Sandy asks when Alex and I run into him in the mornings, when we're all waiting for school buses. Alex doesn't pay much attention to him. "How come Alex doesn't talk?" Sandy likes Ned, and he'd like to like Alex. He likes friends. Alex could use some. (May 2008)
Toast is the small female black cat that wandered into our apartment about five years ago one night as I was taking out the trash. We can no longer deny the signs, and this is a mightty small apartment for the six of us: me, Jill, Alex, Ned, Toast, and autism. Can't find a service coordinator who understands. We live with the heartbreak.
Seems unable to understand clear directions. "Get off the table!" "Get off the counter!" "Don't go in the bedroom!" Nothing gets through. Toast just wanders the apartment in her own little world.
Doesn't articulate needs and desires (semi-verbal?). Seems to want to be picked up, then walks away. Jumps on the couch with us, but refuses then to do the sociable thing. "God, why don't just sit on my lap you stupid cat!" says Jill. I've always said that if only the language would emerge our whole picture of Toast would change.
Loves being brushed. Seems to prefer the length of the body to legs and paws. Also between the ears and down the neck. We don't do it often enough, and anyway are unsure it's good for her. Sensory input seems to please her, but who knows? Always comes when I pull out my comb.
Limited diet. Admittedly, likes some variety, but only in terms of different colors of cans of Fancy Feast. Eventually turns up her nose at everything, and stares at us with eyes that scream "No! No!" Will mostly eat the same crap meal after meal, as if by habit, and snacks way too much on crunchy stuff.
Indifferent to social conventions. Sleeps all day. Cleans herself outside the bedroom, sometimes in front of company. Has disrupted parties. Claws the dining room chairs with no trace of regret or shame.
Fascinated by simple things. Can watch a roach for hours without actually killing it or moving much at all, except for her tail. Fixated by peacock feather dragged until the bedspread. Spellbound by a tinfoil ball or a pigeon on the air conditioner across the alley. What kind of person watches these things? How's she going to make a living? Frequent "stop-and-stares."
Doesn't know where she is in space. Skids into walls, claws scrabbling at the hardwood. Fell off the windowsill. Flopped onto her back and fell off the bed while chasing the peacock feather under the bedspread. Fell off the table after missing with her entire hind section, and slipped to the floor. Looked around as if she meant to do that. Doubt she'll ever live independently. (April 2008)
Alex is sleeping better. He's generally out by about 8:30, and sleeps through the night maybe four or five nights a week. The only problem is, he often gets up around 4. Some people do get up at 4, like farmers, my aunt Freda, and platoon sergeants. I've heard of people getting up at 4; I have never lived with any, and am trying not to now.
"Alex is up," Jill will say beside me in the bed. Under our bedroom door we see the slice of light from the living room. Alex has gently closed our door.
These days, I'm actually I'm often up as early as 5 anyway, sipping coffee I can probably live without drinking, sometimes actually eager for the day's activities to begin. Usually I start such activities by searching YouTube for old Genesis songs. "My dad used to get up early!" people marvel, and I can tell them why: Dads crave an hour or so before people start pulling at them through another day.
And Alex is actually hard to wake on those mornings when he's slept through. "Alex," I'll say as softly as I can and still get my point across, "up and at'em, Alex. Time for school."
"Time for school," he'll mumble.
Four has to be right out. For a while it was okay, as he would shut our door, turn on the lights (including some that I think bothered Ned, which had to stop), get himself a bowl of pretzels and slide in an Elmo DVD. The one morning we heard him leave the apartment, presumably on his way down to the basement storage room to root for more Elmo videos. He came back after also buzzing the laundry room. Very bad. Not to mention that I think 4 a.m. is too early to start your school day unless you have to help plow the north pasture first.
Jill or I used to escort him back to bed and lay next to him, and hope he stopped chattering and giggling sometime before 6:15. No more. As Alex is a fine companion when all you want to do is find uploaded Phil Collins videos, especially if the TV's on low or Alex is in his own iPod mood on a given morning, I started getting up with him. But soon I concluded that this idea had no more future than getting into bed with him. What sort of lesson in family living was lights at 4 a.m. conveying?
So now Alex and I do something different. "Pretzels! Elmo! Fire truck, fire hat!" he'll say. All his favorite things.
"No, Alex," I say. "You have to sit here on the couch. You can read if you want, but no Elmo and no toys until 5 o'clock."
"Pretzels! Elmo!"
"No, Alex. See the clock on the VCR?" Don't we all? 4:33. "You can have Elmo and toys and pretzels when the clock says 5 o'clock. I can't have our day begin at four in the morning. You have to sit on the couch. You can read or look at a book if you want."
He starts to snuggle into our comfy and soft maroon blanket, and his head sinks onto one of the couch cushions. "Alex, do you want to go back to bed? You can go back to bed if you want, but if you stay here you have to sit up."
"Blan-ket!"
I strip it from him with all due force. "No, Alex. If you want to stay out here you have to sit up. You can go back to bed if you want. You sleep in your bed."
"Fire truck! Fire hat!"
"No, Alex." 4:41. "You can have toys and Elmo in 19 minutes. See the clock? You can have those things when the clock says it's five o'clock." Maybe at least this will teach him how to tell time. Seems like a fair trade for my legs aching and my eyes aflame by 3 p.m.
And he does sit: 4:49, 4:54, 4:58. "Two minutes, Alex," I say. "Two minutes," he says. Dad the stickler. Dad the jerk, I'm sure Alex would like to add. The stickler trying to figure out another puzzle over the second cup of coffee that will bedevil his bladder before lunchtime, the jerk groping for yet another kind of invisible touch. (April 2008)
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