Here are the latest developments:
Alex is picking up stuff: It started with parts of the toy train and the plastic letters he can spread over practically a square acre of apartment floor (I thought there were 26 letters? I see way more than 26 letters here...) We can also now get him to stoop and pick up almost the entire bowl of Cheerios he has inevitably upset. We're also working in sweeping, and wiping up spills by putting the paper towel into his hand. He seems to know it's something he's supposed to do: one recent evening, Jill got mad at him because he wouldn't hold still during a diaper change. He cried a little, then ran out into the living room and began scooping up his toy letters. All 90 of them.
Ned playing "Pillow": This starts with Ned begging me to lay down on the bed, with my arms clear of my chest. He then squares his little Celtics baseball hat on his head, breaks into a big grin, twirls and falls on me. Extra points for him if he lands on me elbows-first, and if dad tickles just right. He repeats this over and over - apparently it's more fun than eating dinner - always straightening his hat before the plunge and asking, "You okay?"
Train stuff: Grandpa bought the boys a plastic Battat train set a while back. I bought another on ebay, and grandma threw in a classy wooden set with compatible track. Ned can break out and put away the sets by himself, and I've never seen Alex solidly absorbed for 15 minutes; he is the only person in our house who's assembled a closed-loop track using every piece.
Sleeping: Overnight - ha ha - Alex went from being a toddler who slept 11 unbroken hours to being a boy who goes to bed about 9, decides he must catapult into his parents' bed around 2, and gets up with the sunrise. Last night, we did let Alex stay up with us on the couch and watch a movie (Funny Bones), and this morning he did sleep in. More about this when I have the energy.
"Nemo": The movie, Ned's first. Jill took him, and reported that he sat through about half of it before getting up to run around. Sat through the credits, though, and had popcorn. Now he can't pass a fish restaurant, let alone the Disney store on Fifth Avenue, without calling "Nemo?" Maybe we should get him a fish.
New books at reading time: Harry the Dirty Dog and My Many Colored Days have made the favorites list, much as any book does when Alex and Ned have corroded our sweet bedtime routine into a wrestle-fest that goes on and on until dad storms out or somebody gets bit.
Wrestling together: In one of the most promising signs that we're coming together as a family, Alex and Ned have discovered the brotherly joys of pummeling each other. In play, of course. Ned twirls and falls on Alex (see "Pillow"); Alex lays on his back and kicks Ned with gradually increasing force until I stop him. Beware Ned, if Alex and his sharp teeth aren't in the mood for playing, but most times it winds up being a giggle-fest for both boys. I think it's slowly dawning on Alex that he has a handy playmate. For Ned, wrestling with Alex is a wind-up it's difficult to pull him down from; trying to get Ned ready for bed afterwards is like trying to put a diaper on a live lobster.
Brushing teeth: One of my proudest accomplishments. Both boys scoot to the bathroom when I call "Time to brush our teeth!", and, after I dig up their cup and brushes from somewhere amid the bath toys on the floor, they have the drill pretty much down. I have to hold Alex's neck, which he doesn't like. Ned was first to see that you put the little plastic cup in the cup holder when you're done. I never think to do that. (July 2003)
The other morning around 5, Alex burst into our bedroom. He climbed into our bed chattering, woke us both up, and at once filled us with wonder at another day and dread that none of us would get back to sleep before we rolled out for the school bus.
Perfectly normal. Except-
"Alex isn't wearing socks!" Jill hissed. "This is Ned's doing! I'm gonna kill him!"
We still have Ned in a crib, which admittedly is tardy of us parent-wise, but since we keep the railing down and Ned scales up and down the thing with a the dexterity of foretopman, these days we consider the crib just Ned's combination jungle gym/place to sleep. A bed's in the works. Long story. Anyway, Ned already has a bed.
"Ned, is it that you want to sleep in a bed, or that you want to sleep with Alex?"
"Sleep with Alex," Ned says.
A few weeks ago, we began discovering Ned asleep beside Alex. We would find this when we went in to change the boys' diapers for the night -- speaking of tardy parenting -- and there would be Ned, pressed between Alex and the wall, arms up, feet touching and legs making a little diamond beside his big brother, who was snoring and pressed against the bed railing. Often, Ned would have taken off both his socks and Alex's. We would move Ned back to his crib, and in the morning either find him right beside Alex either in the bed, or bolting in tandem to shatter our bedroom peace.
Ned's migration doesn't matter on most school nights, when Alex is snoring on my shoulder even before we're up to "Would you, could you, on a boat?" Ned, who gets an afternoon nap, likes to stay up for the late show of Mud Is Cake or Harold and the Purple Crayon.
At last, after Harold drops his crayon and the little hand creeps toward nine, I ask Ned if he wants to go to bed. "Yeah," he whispers, with a nod.
"Go to your crib," I tell him softly, "until I get Alex to bed." Ned hops down, and pauses. "Crib, Ned," I say.
"Nawwo. Sleep on bed." He scrambles onto the mattress of the toddler bed and flattens himself elaborately against the wall. I lay Alex down next to him. "Do not wake Alex," I warn.
Ned has woken Alex up twice. One evening about a half hour after bedtime, Ned, who can't turn the bedroom doorknob by himself, charged into our living room. Behind him stumbled Alex, clutching Elmo, squinting in the light, and probably wondering if the house was really on fire. I instantly recognized what had happened, and Ned and I had what parents who choose their words carefully might call "a moment."
More recently, Ned and Alex charged into our bedroom at four in the morning. Jill took Alex, and I returned Ned to his crib. "Do not get Alex up again!" I said over him. "He has to get up earlier than you do to catch a school bus, and I have to get up with him. If you get up tonight again, I'll get you up with Alex in the morning." Ned's only three, but this exchange convinced me that he speaks plenty good English.
I cradled Ned in the big chair in the bedroom the other night, after Alex was asleep. "Ned, you want to sleep in your crib?"
"Nawwo."
"Ned, you know something that's going to change in here soon?"
"Yeah." He didn't know, but this is just what he says.
"We're going to get another bed in here. You're not going to have the crib anymore."
"Fred is my friend," he said.
Ned will miss scaling the railings, but this room will be bigger without them. I imagine the beds, neat with blankets and pillows, right out of a toddlers' magazine. Next will go the changing table, replaced by another dresser, which will make one for Alex and one for Ned. Soon, Jill's paintings may disappear, too, replaced by posters of some cartoon hanging over my sons' beds. By then, Ned might even be using his own bed once in a while. (April 2004)
- Alex now sleeps in a bed. A real bed from Ikea! "This is gonna take you weeks to put together!" Jill assured me over the phone on the day it arrived. Took me a couple of hours, that's true, not counting the moments I had to make sure not to accidentally puncture Alex and Ned with my power drill while they helped me. Now Alex sleeps in a bed. So does Ned, despite his promises that he'll leave his big brother alone through the night and despite his bed - Alex's old toddler job - still being plenty big enough. We often go in to find him jammed against Alex, both of them snoring gently as little marines, Alex at least a centimeter from sliding off the edge of the mattress.
- Jill puts Ned on the potty in the bathroom. She kisses his head and settles him on the seat. He fidgets. "Who else is going to love you and kiss you when you're taking a poop because it's so cute?!"
"Shut the door!" Ned yells.
- One dinnertime, Alex hauls out our boom box and tries to lift it to the table. I'm sick of the kids-sing-Beatles CD, however, so I find another: chamber music from Patrick O'Brien's Aubrey-Maturin sea novels. Alex munches his pretzels and seems to like the music. I show him the picture on the front of the CD case. "Ship," I say. "Chip," he replies.
-I'm in the kitchen. Jill is finishing her dinner out at the dining room table. Ned dashes into the kitchen and demands chocolate. "Ask mommy if you can have chocolate," I tell him. He runs out to the dining room and I hear him asking Jill. "You may have one piece!" I hear her tell him. I stick my head out. "What's the word on the chocolate for Ned?" She starts to tell me when Ned slams against my legs and tries to force me back into the kitchen: "No! No!" he shouts. "Don't talk to mommy!"
- Jill provides this report of her and Ned at nap time: "If you want to lie down next to Mommy, Ned, and take a nap, that's fine. But you have to be quiet." Ned waves the plastic tree trunk from a Play-Doh toy through the air, making whooshing noises. Jill closes her eyes. She senses, next to her, Ned scrabbling around doing something, then putting his fingers to her lips. It's not the plastic tree.
"Eat this! Eat this!" Ned says. Her eyes fly open and she asks, "What is that?" "Eat this! Eat this!"
She repeats her question, and Ned replies: "Something from my foot!"
- In a similar vein, Jill playfully asked last night if she could bite Ned. "I'm not food!" he fired back.
- Alex charges up to me and sticks his tiny toy plastic rooster an inch from my nose. "Cock-a-doodoodoo!" Alex says. Close enough.
- In the quarter-hour Alex has between getting up and catching his bus for Saturday camp, he manages to strew Legos all over the living room floor. Then he announces that he wants to kill the wait time with an Elmo DVD. "No, Alex, no Elmo until-" I don't get a chance to finish before he's sweeping through the Legos and putting them back in their box.
- Alex catches a mild case of Pink Eye, and the doctor prescribes eye drops. Ned seems delighted when he catches the Pink Eye, too, as he gets to announce, "I need my eye drops!" Nothing tickles him like a new kind of medicine.
- In the grocery store I find a package of cinnamon-sugar Pop Tarts, unfrosted, Jill's favorite. I bring them home, and Ned is the first one to get the package open. He's sitting at his little table, gnawing his ill-gotten Pop Tart, when Jill asks if she can have one. "They're mommy's favorite," Jill tells him. "Naw," Ned replies. "You wouldn't like it."
- Alex dumps out the Legos one night in a clatter across the living room floor. Then he selects a couple dozen Legos of the same size and color, and starts building a staircase. That's clever enough, but when the staircase gets too long to hold in his hand without breaking in half, he learns to set it on its side on the table: They're more stable and easier to add to that way. I never would have thought of that. "Alexander bear!" Jill cries. "He's saying, 'Look what I built!'" (May 2004)
Yesterday afternoon I had a few hours alone with Ned, and he claimed he wanted to go to the playground. So we set out across 72nd Street toward Central Park, where there's a playground. We entered the park and I told Ned to turn right for the playground. "Naw," he replied. "That's for kids, daddy."
Declining to answer my subsequent question ("What the hell do you mean by that, Ned?"), he headed first downhill for the boat pond, then across a hill of mulch and new grass.
"Ned, the playground is over here!"
"That's for kids, daddy. Want to climb the rocks."
He found a 5-foot-high boulder and took one sheer side in a blur of Gap Kids T shirt, and paused at the summit to find fresh stuff to climb because it's there and it isn't for kids, daddy. He then spied a boy doing the same thing on a rock a few yards away. Over Ned went, spidering up past the boy. He stopped on a ledge that overlooked about a three-foot drop, his toes sending pebbles into space.
"Ned, I don't think this is a good idea without a hand, all right!"
He agreed, for once since he was born, and took my hand and leaped. His sneakers hit the dust with a hard little plat while I tried to not recall my own clearest memory of rock climbing: my accidental ascent up the 5,000-foot back side of Mt. Cadillac near Bar Harbor, Maine, in 1979, an afternoon that again comes alive for me whenever I think about planting my foot in a pencil-size crevice filled with wet moss, with nothing behind me but too much sky.
Boulders are taking the place of playgrounds as the dangerous entertainment for my boys. The old days of weekend afternoons used to feature me shoving a double stroller back and forth across the Park, the boys strapped in, and hitting three or four playgrounds, countless water fountains, and a few snack bars for hot dogs and chips. Back when we still did playground and their jungle gym equipment and when I first saw Alex take a the ladder of chain rungs or Ned fall into space to wrap himself around a pole and slide to the ground, I felt the gray hairs. But soon it was common stuff: Alex went up like a veteran of a sailing ship; Ned came down like a longtime member of a fire brigade.
Now, the walks down Fifth Avenue feature a couple of little boys scampering on top of the benches, dodging homeless and slowing down not for dog crap and busted malt liquor bottles, but only to see how slippery these giant tree roots snaking out of the cobblestones really are. And don't forget Alex's determination to ditch me and Ned and disappear down the sidewalk to find an apartment of his own. "Alex, stop now!" Shoving that damned double all over upper Manhattan was easier, I think. Don't all parents, once you crack them a couple of beers, admit to preferring the kids strapped in?
First time I tried free-ranging my sons was last Thanksgiving. With time to kill in the morning before the relatives showed and the Lions kicked off, I rolled the boys to a little clearing behind the racquetball courts in mid-Park. At one point, I recall, Ned was a speck down by the ball diamonds. "Ned?" I saw the legs on the speck pump as it grew smaller. Alex scampered over rocks and mud, took a spill, accepted a hand up and a brush off. This territory was level, and fair to little kids.
Big rocks are different. Big rocks weren't assembled in some toy factory that can be sued. Rocks are sharp and unforgiving. Big New York rocks are used by other people, sometimes in the middle of the night, sometimes to hear bottles break, or as cover to inject a drug of choice. Big rocks are what you climb when you're out in the world.
A few weeks ago, Alex and Ned and I walked all the way across Central Park, and they climbed every boulder in sight. The boys shot up and over, scampering against the sky. I'd have pulled them down if only I could've caught them. (July 2004)
"Retarded" as been used three times in the past six months aloud in my office, usually in reference to someone - a vendor, a source, someone who holds a job - doing something dumb. "That's retarded!" "He's so retarded!" "I'm not a retard!" Each time, the word flew right out of a cubicle, clear and loud, for all to hear. I think anyone older than 5 could imagine many words that would cause quite a stir, and a lawsuit, if they flew right out of cubicles. "Retarded" and "retard," so far, don't seem to be among those words.
Words change. "Special needs" seems to have replaced "challenged," which replaced "retarded," I guess, though I've come to this game relatively recently and may not have the etymology right. "Retarded" has really stuck around, though. I Googled the word and turned up more than 19.1 million hits, including a band with the name (which somehow popped up first among the 19 million), retardedhumor.com, "retarded animal babies," and "movie criticism for the retarded" (which on Google scores right ahead of "Declaration on the Rights of Mentally Retarded Persons").
Jill and I often think of how Alex looks to other people: on the street, in restaurants, at the airport and on the bus and the subway. Many people still look at Alex; when I say "look at" I mean in that honest way that shows they'd like to engage him. Sometimes Alex notices them, sometimes not. Sometimes he answers them in a somewhat appropriate way if they ask him a question; often not. "That's the way they communicate," one woman said to me once in a McDonalds, meaning autistic people, about whom she seemed to know something; I somehow thought it a kind observation, though I was just guessing. As usual. In general, people still look at Alex more or less with kindness, as if to say, There's still time for me to look at him like this.
A co-worker once came up to me mid-afternoon of a workday. "Do you ever go to the park over by the river to eat your lunch?" he asked. I said no. "The guys from the special school go there," he said. "They sit on the benches and drool!" And this particular co-worker is a nice guy.
Alex remains, at age 8, a nice-looking kid. Dark hair and eyes. Eyebrows that women love both on themselves and on men. A killer glance, when he makes eye contact. Slim, downright skinny; it'd be hard for most people older than 5 to see him as any kind of threat. Unless you count the 2-year old he slapped on the playground two summers ago. She probably saw him as a threat.
"It's one thing if you have a cute little boy acting like that," Jill has said. "But he isn't going to be a cute little boy forever."
There was a guy on a playground a few summers ago. He was a big teenager with a tiny shaved head and five 'o clock shadow. He looked familiar to me, somehow, as he loped through the playground, seeing nobody. Little kids scattered before him like fish. And an "older" guy from a special-needs high school in Ned's school building got into the first-grade classroom the other day. "He had black hair. He ran in and sat on the teacher's chair," Ned recalls, adding that he himself hid under his desk until somebody came and fetched the young man. A few days after that incident, when Jill picked Ned up from school, Ned's teacher said Ned was great when the guy came in, telling her not to be scared and that the guy was just "sensitive, like my brother."
I tried to explain to Ned that the young man was indeed probably a lot like Alex. "I was scared," Ned said. I explained that the young man wouldn't have hurt Ned, but even as I said I wondered if I was absolutely right. (February 2007)
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)
Ned put a bunch of stuff on a sheet of light-blue construction paper: a plastic slinky, a yellow toy totem pole, a toy car, a candle on its side, and a red canoe from the Lincoln Logs set. Each sat on the paper in its individual puddle of wet Elmer's glue. Then Ned shredded a "we care about your business" notice we got from our new bank, Chase-Wa-Mu, and added the shreddings as snow. Across the top of the paper, in pencil, he wrote "Crazyland."
So I came home last night ready to whip out my notebook and interview the mayor of Crazyland (I'm doing a big-fee story these days on Ned's sibshops, where he goes on Saturdays to be with other siblings of special-needs kids to play and talk about how they feel, and Ned is terrific interview). I find Crazyland devastated. Stripped of its the slinky, the car, the totem pole, the canoe and the candle, only skeletal circles, like the foundations of buildings, of dried Elmer's left in the wake of what must have been a miniature Hurricane Ike. Or Alex.
"Why can't you make sure he doesn't wreck my stuff?!" Ned demands. "He wrecks it all the time!"
I can believe it. Crazyland should've been on the top of the tall bookcase, along with Ned's latest Lego castle, the model airplanes we've been building, and Ned's home-made jack-o-lantern mask he wore on Halloween. But Ned put Crazyland in his room when he came home, well within the path of Hurricane Alex.
What else has Alex wrecked?
"I built that Lego thing a long time ago - no, not the castle - and he wrecked that! I built the thing from Lincoln Logs and he wrecked that!"
"Jill, what do I say here?"
"I don't know what to say," she replies.
I turn to Ned. "All I can say is, you have a lot of things Alex doesn't have. You had a much nicer Halloween. You have birthday parties and playdates. You have friends. I know it's hard to understand and it's unfair, but that's the way it is."
That's the way it is for a lot of siblings of autistic kids. They talk about it in sibshops, squatted in circles on the carpet of an agency's meeting room. Talk about a time your sibling embarrassed you. Talk about a time your sibling caused a problem with your friend. Talk about a time you were confused by your sibling's disability. "With autism, you're going to have a hard life," Ned said in his interview for the story. "It's not fair that they get treated different. Everybody should get treated the same, no matter if they don't talk, no matter if they watch different shows than us, no matter what. It makes me feel sort of sad for him. I wish he could talk," Ned added. "That's the main part I wish, because if he can't talk, it's real hard for us to communicate with him, and if he could talk it would be a lot easier. We'd know what he's thinking." Ned said all this before the hurricane.
It should make a hell of a feature when I get around to writing it after working out this Crazyland mess. I paw through the crap on the boys' bedroom floor and, amid the scattered Elmo tapes and the bowl of soup crackers Alex was eating in here despite our not wanting him to eat in his bedroom I find the slinky, the yellow totem pole, the toy car.
They might pay me $2,000 for the story. Maybe we'll buy a cabinet with a lock. (November 2008)
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