Jill says Alex looked at a streetscape photo on our wall the other day, and he studied the photo for a while, then said, "Pizza. Pizza."
Jill says she squinted at the picture for several moments before she spied, deep in the background, a tiny sign for a pizzeria. He can read. I repeated this test many times on the street at varying distances from the pizza joints, with no success at getting him to repeat the word, so I don't know where to go from here. But we're pretty sure he can read.
"He knows what he wants," my boss Howard has said.
Lately I've begun fearing that one day Alex will be homeless. He and I probably walked by more than a few homeless on the way to look for that pizza sign to read. You don't hear as much about them anymore, but be assured that in New York homeless by the bushel still rant on the subway and sidewalks, and have for years, and will for years. There are scads of them, all over the country, and they were all children once. They all came from somewhere.
Alex doesn't rant, but he does communicate. I've always said that if only the language would surface, we'd see an entirely different picture. A kid on the playground asked him yesterday how old he was, and he reportedly said, "I'm just a kid." Ned handed him something the other day, and he thanked his brother by name.
"Chocolate?" says Alex, before dinner, his arm upraised toward the cabinet where we keep the Chocolate Chaos protein bars. He isn't pointing at the cabinet; I keep forgetting to make him point.
"Not before dinner, Alex. You want chicken nuggets? A hot dog?"
"Chocolate?" Repeat conversation three times. "No!" he exclaims to the chicken and hot dogs, then adds, "Crackers?" I get down the crackers, a borderline pre-dinner selection. I show him the box. He stares at it a minute and then quietly says:
"Chocolate?"
If prompted, he will say thank you. He wants the light on, for some reason, in our bathroom; he watches me obligingly turn it on; I sit back down to dinner; he runs to check if I really truly left the light on. He waits for me or Jill to leave the living room before zeroing in on the DVD player and popping out "Sponge Bob," which Ned has been watching and which Alex doesn't like. "He knows what he wants," Howard has said. "You can see it in his eyes."
So how come a kid like this has yet to utter much of a sentence? How come on the playground he keeps trying to drink out of puddles, or has taken to standing for moments on the jungle gym, his head tilted to one side and his lips open, looking like he's wondering how he got there, maybe wondering how he got anywhere and where he should go next?
Alex is also excellent about taking his dishes to the kitchen sink or dirty clothes to the hamper. If he isn't sure where to go, he pauses. I turn his shoulders in the right direction with that terror of foreseeing a lost guy on the subway, and with the conviction that I'm doing all I can right now.
"I just wish Alex felt more compelled to speak to us," says Jill, whose cousin Jonathan, a pediatrician, saw the boys together months ago and observed, "It's just like you've got a pair of 3-year-olds." Maybe Alex is right on schedule -- right on his schedule -- for coming forth.
"I hope he always gets what he needs," says Jill, "and that it's what someone can provide."
Take the TV away from Ned, and he has a core meltdown. Take the TV away from Alex and his dials fly into the red for a minute, then he goes off to focus on his alphabet stencils or study some of Jill's old photos. Alex can find his own thing to do when Ned must have "Sponge Bob."
"There's not nothing going on in him," Jill has added.
There's not nothing going on in the world, either. There's pizza, for one. (July 2005)
A shape and a weight on my legs in the night, shattering a dream. In the shadows I see the shape of Alex's head. The green dial of the clock radio stares back at me, numbers telling me that right now all the world is quiet except my son.
12;30, 2, 5:10. A bad night. His diaper was wet. Once up, he chatters for an hour, impervious to hisses of, "Alex, go to sleep! You have a school bus coming in the morning!" He seems to consider this, then chatters again and calls "Yea!" in that voice he has that is soft and quiet and heartening to me when I'm not goddamn trying to get to sleep. Jill and I have a school night arrangement: Night Duty and Morning Duty. One of us gets up overnight and gets to sleep late; the other gets Alex out in the morning. Sometimes I give up in the middle of the night, and go sleep in the boys' bed. Sometimes Jill does. Both of us have considered going across the street and sleeping in Central Park.
I've heard about these horrors from other parents of other autistic kids. My kid wakes up every 15 minutes ... My kid hasn't slept through the night in 11 years ... I haven't had an unbroken night of sleep since I can't remember when. And so on, a litany the flesh and blood of which you can't appreciate until you find your eyes burning afternoon after afternoon.
Alex is on Topamax for seizures, and we also give him melatonin, the Topamax crushed into a powder and the melatonin dust emptied from its capsule. Then we swirl it in about a half inch of water, and Alex drinks it. (I must remember that it wasn't long ago that Alex bolted at the idea of drinking any medicine.) This must be some highball, as Alex is out maybe 15 minutes later, around 9 p.m. Too early, I know, but every school night around 8:30 he starts stumbling around, his eyes slits - pretty much how his parents look most mornings. Note that the other evening we all went to a concert in Central Park, and Alex didn't get to hit the hay until 10:30. He slept through the night.
Aunt Julie is on Topamax. "It tastes bitter," she says, so we swirl in a pinch of sugar. She confirmed that it's great for sleeping.
Other things are, too. Like dark, cloudy, rainy mornings, when Alex (and, needless to say, Ned) will keep snoring until almost 9 a.m. (Ned crawls between us sometime in the night, too, but in a total turnaround from his baby years, he conks out, stirring only to elbow me in the face, rake my shins with his toenails, or continue his hunt for the geometric epicenter of our queen bed. Other than that, he sleeps like a frat brother until it's time for the morning's cocoa and "Sponge Bob.")
"We have to buy better shades for the boys' room," says Jill. She has also already left a message for the doctor who prescribed the Topamax, hoping the doctor has some idea how to get Alex to stay in bed and quacking sleep!
My eyes feel gummy, and my legs ache at my weight in the morning. What bed did I sleep in?
Lately our Night Duty arrangement has been undergoing a strain. Last night, for instance, I, on Night Duty, begged Jill for help about 4:30. Except she had morning duty and the morning duty person has to be near the alarm clock, and we have only one alarm clock and it's in our bedroom. The boys' mattress hurts my back. Also, my shoulder gets stiff because the pillows in there are too soft. Also, there just plain isn't enough room anymore on the boys' twin mattress. I know the boys are getting bigger - a new bed is on the list for August - but why in hell is the boys' bed getting smaller to me?
Jill predicts that one day she and I will have a conversation that will include the statement, "You know, it's been a long time since either of us got up in the middle of the night." I look forward to that as much as I do waking up in the same bed I fell asleep in. (July 2005)
A few days have gone by, and I can't remember when I first spied it. Or didn't spy it. Maybe Alex was laughing one evening when Jill was out, after dinner (for Alex, probably two hot dogs and a chocolate protein bar) and I had the guys alone, and I glanced over and quickly thought something was just a little ... off.
I called him over and asked him to open his mouth. I gently opened his lower lip, and there it was. Or wasn't. Between two teeth, a fine pink gap, small as I can imagine. At the bottom of the gap was a tiny white sliver.
"Hey! Alex! You've lost a tooth!"
Remember when he had no teeth? Remember when he first bit me? It doesn't seem like yesterday, but it also doesn't seem like more than week ago last Tuesday. "Hey! Alex!"
Ned and Alex have learned about lost teeth from a British kids' booklet entitled, well, The Lost Tooth.. It spells out the whole story: the fingering, the wiggling, the way the thing just pops out like a part of your life coming loose, and then all the people you're supposed to show it to, especially if it's your first loose tooth.
We don't have the tooth; Alex probably swallowed with a hunk of chewy protein bar. Of course he can't tell us. I thought back, though, and yes, Alex was yelping and screeching when he ate that bar for dessert. I remembered asking, "Alex, what's the problem? You've got your chocolate."
"Alex, you've lost a tooth!" I kept saying and saying. It somehow makes me feel that my first son's future is suddenly bright. I kept saying it until the phrase snagged Ned's attention and he dashed over like E.B. White's daschund for a peer.
"Oh my god!" Ned said. "Oh my god! Oh my god, Alex!"
"It must've happened when you ate your chocolate," I told Alex.
"I want chocolate!" Ned said.
I took a picture with the digital. I took another, in case I screwed this one up and erased the first photo forever. Alex seemed to understand this moment: He grinned in that way one grins when showing off teeth. I know he likes to have his picture taken, but still he seemed to understand, as if he'd had this secret, though he didn't understand why it had to be a secret and why it had to be locked from us by his autism, and now the secret was out and he was happy.
I took the two pictures, helped the boys brush their teeth -- a slightly quicker task for Alex now -- and put them to bed.
Later, I showed Jill the digitals of Alex and his grin. "Notice anything!" I asked her. No. "Notice anything missing?" She got it then. "My bear," she kept saying, on this night for all of us to mumble the same thing over and over in wonder. "My little bear has lost a tooth ..."
She turned to me. "I'm sorry it's something he had to go through alone," she said. "I knew there was something bothering him. Was he agitated when you brushed his teeth, too? I'm sad because he had to go through it alone. He couldn't tell us."
I used to get a quarter under my pillow. I think my mother got pennies. Ned will probably get a twenty. We planned to leave a toy under Alex's pillow. He doesn't really understand money, and we want to get something that would really delight him.
Next day, I think it is, Alex falls on the playground and gets a nasty cut on his chin. We even consider getting him stitches, but figure he'd pull them out. And Ned's own first dental appointment looms. Upshot is, not until a few nights later, while Alex sleeps, do I place under his pillow a can of Elmo Play-dough that Jill picked up somewhere and was saving for a special occasion.
"Alex, let me see it again." I gently tug down his lower lip, and there it is, or isn't. A tiny pink grand canyon, and at the bottom of the gap is a white sliver of the tooth he'll probably have for the rest of his life. Quite a moment, quite a moment. (August 2005)
1) "Jeff," said Jill when I got home, "Alex slapped a little girl on the playground today."
2) "Jeff," said Jill when I met her a few days later, after work in The Container Store, "Alex bit a boy on the playground today. The mother called the cops."
We're giving you one chance, Stimpson! Come out of that bedroom with your Elmo tapes high in the air, and kicking your binkie out in front of you!
Here is what Jill told me after our babysitter, a mature woman with a head on your shoulders, told her:
1) Ned was pestering Alex on a tiny playground in the park across the street from our house, and a 2-year-old girl got too close, and Alex slapped her. The father was not pleased. What a shock. I don't like this park: it's too cramped, and the boys have been going there too long, anyway. The little girl lives in our building. Oh, great.
2) This one's more complicated. In that same small playground, Alex and another boy got into a wrangle over the boy's toy. Alex "bit" him on the arm, but further examination revealed not even teeth marks. Our babysitter offered to give the mom Jill's cell phone number, and the mom said that was okay and left the park with her son. Half an hour later, she returned, and started telling our babysitter that Alex wasn't allowed in this public park, and if he couldn't behave around other kids he would have to leave, and that she worked in the neighborhood and that our babysitter better not bring Alex around her at all. Then she called the cops, who came and told our babysitter she had to be careful with Alex, and no doubt drove away wondering how in hell they were ever going to make sergeant answering calls like this.
As stated, I didn't witness these events. I can, however, turn my head to the left, look down, and witness the two healing bite marks from the other night. I got these in the bathroom. I forget why. Maybe it had something to do with the toilet. Alex wasn't sure what I wanted, he maybe even wasn't sure what he wanted, and he was tired, and whammo. He bit hard. He had no words; he had incisors.
I have seen him bite. About a month ago, on a playground with a high slide, Alex had just gone down and was sitting on the lip of the slide because lots of other kids who had also just slid down were clustered there in the sand. A boy about Alex's age went whooping down the slide and plowed feet-first into Alex's back, snapping his head back. This stuff has happened on playgrounds for millions of years. Sometimes it means a fight. Sometimes it means later payback. What it meant on this afternoon was Alex quickly browsing the cluster of kids, then chomping down on the leg of the boy who'd rammed him. Not Ned - a frequent morsel - nearby, not one of the many other kids, but the boy who'd rammed him. If Alex had thrown a punch or shoved the kid, I would've actually been proud.
A few minutes later, the boy looked at me with a puzzled expression, and lifted his pants' leg like Richard Dreyfuss showing off his shark scar on the boat in Jaws. I got Alex and Ned out of there. Tugging Alex is harder than it used to be. I've come to hate playgrounds.
I know this must stop, or somebody's going to take his head off. I must help it stop.
For a while, this whole thing was almost funny. Once, for instance, Ned was bawling and bawling about something. Alex walked up to him, looked him right in the eye, seemed to start to hug him, and then smacked him Three Stooges-style across the top of the head. That was pretty funny, or at least it would've been had Alex been holding a rubber chicken. (Poor Ned. We think Alex may have left his second lost baby tooth in Ned's arm.)
Of course this stuff isn't funny, but dangerous, and accompanied by wilder behavior as the months go by. Alex's sleeping went to hell over the summer; he's two and times and night, all giggles. He gets wild in the evening: running around, lying on the couch and kicking the wall that we share with some truly understanding neighbors. Screaming. Oh, the screaming, with his hands over his ears because even he doesn't want to hear it.
Maybe he's just feeling his oats and stretching his legs in his seventh year. He's getting bigger and stronger, and maybe just beginning to play with the idea of how to make himself present in the world without actually using sentences.
Alex has always been the one things were done to. Only recently have I discovered how much comfort I took in that. "What will you do when he's stronger than you are?" asked Jill's cousin. That is a hard question. That answer lies where parents fear to tread. It lies on a couch, kicking the wall. (September 2005)
To people who hear Alex's NICU stories and want to know what's like today, I explain that physically, everything is pretty good. God knows trying to snag him in the park is like trying to catch a dragonfly. No, Alex's considerable issues - I tell people he's "solidly on the spectrum" - are what I guess they call cognitive. He must absolutely control the VCR. If you give him chicken nuggets at home, make sure they're Weaver chicken nuggets, and chicken nuggets and not the patties or the weird fake drumsticks, but the nuggets (and if possible turn them all so they're facing left). He likes to shut every door, dump liquids such as $12-a-bottle maple syrup down the kitchen sink, and turn on every light in our and others' apartments. To be fair, he also scurries around turning all the lights off when we're leaving the house.
"Get the lights for me, Alex."
He excels at trash, too. He shoots right down the hall to the trash room, wrestles there with the doorknob, but it's hard - it's one of those weighty old New York City apartment building doors that feels like it was taken off a watertight compartment on a battleship. So I have to open the door, but Alex yanks open the chute and flings in the bag. He shuts the chute and closes the door, too, very professional, I'm mere days from allowing him to do this for himself, I think, as I watch him run full speed down the hall and without stopping try to go into a neighbor's apartment. This neighbor has a pit bull.
"Let's go home, Alex."
They say we're having an autism epidemic. Other people say we're not, according to a quick Google of the subject, but the numbers are getting pretty big. I couldn't find exact numbers, but one reason the numbers are big is that vaunted "spectrum" is so large. Almost anyone could be on it, including most of the bosses I've had. Somebody's sure filling those hotel conference rooms: I've been speaking about Alex for four or so years now, and I've heard the stories of a lot of other parents of autistic kids.
I have a theory about all our lives that involves our kids, index cards, and a revolving drum. If you took half a dozen parents of autistic kids and had each write 50 of their experiences on 50 index cards, then put all 300 cards into the drum, spun it around, and gave 50 randomly selected cards back to each of the parents, all those parents would wind up with the same experiences they themselves wrote down.
There is common ground here; we are part of a special group to which we never wanted to belong, with its own passwords, and own moments of crystal understanding of each other.
I once spoke to a group of preemie parents who all still had babies. Call it my intuition rather than anything voiced, but they all seemed to be size 10s trying to wiggle into size 7 optimistic outlooks that their parenthood was pretty normal. Maybe it was, and I hope it stayed that way. God knows that autism specialists give me vacant looks whenever I try to connect prematurity and autism.
I've learned to judge the stages of parents of the autistic by what they talk about:
Parents of autistic toddlers: fighting for kindergartens, proud that their school districts and some neighborhood retailers hate to see them coming;
Parents of school-age autistic kids: fighting for summer camps, and proud of their on-the-fly medical education about contemporary autism research, a realm of science where pinning down a good theory for your kid can be like trying to drop a marble on a scared mouse;
Parents of autistic high schoolers: talking about sex, somehow, and the disco dances put on by agencies. But by now in their lives this last group of parents looks tired and resigned, as if it's hitting them that their kids have to go to dances put on by "agencies";
Parents of adults with autism: The quietest bunch, maybe quiet out of dignity, maybe out of pride of what they've survived. Speaking softly about where their kids live and, if possible, work. Speaking quietly as if afraid the world will hear and notice, and trying not to speak of that time when they, the parent, will be dead.
I feel this way, as if I have arthritis years ahead of my time. I walk by the homeless here in New York and think, They can't all be drug addicts. They were all kids once.
But I'm an upset guy in general. On the subject of liquids in the kitchen, I once broke a new $8 bottle of olive oil. It just slipped out of my hands and shattered on the tiles. I started flapping my hands like Rebecca Howe on "Cheers" when she gets fired. "Jeff," Jill said, "you have got to get some friends." Wouldn't do any good, They'd be on the spectrum, too. (October 2005)
I wrecked Alex's Sunday. I didn't hit him or lose him or leave him in a mall, and it was only one of four or five thousand Sundays I hope he has in his life. But he's had his share of stink-o weekends, and I could have run the day better.
Our Sundays are Alex's days without something slated -- school, after-school camp, Saturday camp -- so he hangs around the house watching Elmo videos while Ned goes off with one of us to 9 a.m. swimming lessons. Then we go out for a sit-down Chinese lunch, which Jill is trying to work into Alex's routine (Ned will eat anything anywhere). This gets us home by the early afternoon in time for Marla, our respite babysitter, to watch the kids for a couple of hours while we get a break.
Normally, I take Ned swimming. This Sunday, Jill did. She was gone maybe half an hour when the phone started ringing. First was our neighbor Anna, who had to run to the grocery store. Most of the world probably thinks we in New York City live from Chinese take-out to Chinese take-out, but fact is the Depression-era-like Big Grocery Shop is as much a part of life here as anywhere, especially if you have a car. Which Anna does and which we do not, so would Jill like to go shopping? Three phone calls fix it so Anna will pick up Ned and Jill right from swimming. So, Jill should've been home with Alex when Anna called, and taken Alex shopping with her.
In maybe 15 minutes, Grandpa calls. He and his girlfriend want to take Ned to see the model trains in Grand Central. They love Alex, too, understand, but it's hard to get Alex to look at anything for too long -- at least it always has been -- not to mention Alex still sometimes bolts in crowds. So we've told grandpa that it would be better if Alex doesn't tag along, not yet. But Ned would enjoy the trains, and I'll take Alex out for a few hours, still unsure what "out" will mean. I call Jill to tell her. What time's Marla coming, by the way? Jill says we never tacked it down. Marla said she'd call.
Alex and I hang around -- "Elmo's Wild Wild West"; "Elmocize"; volume one of "Mother Goose" -- until Jill returns with the groceries. I say I'll take Ned the 20 blocks south to grandpa's house. No, says Jill, grandpa's coming here. So we put the groceries away as Alex rewinds "Mother Goose."
"Ned," we say, "grandpa's coming over, and you're going to go out with him to see the trains!"
"And Alex is going?" Ned asks.
"No, just you. Alex is going with me for a while."
"Ooooo, I want Alex to go!"
I chock it up to another of Ned's contrary snits, and don't seriously think that he wants to go out with his big brother, especially as he knows as well as I do what Alex can be like on the street.
But you know, Alex isn't that bad on the street anymore, I think. He also actually glanced at the Saks Christmas windows a few weeks ago. And if you're not careful, you're going to wind up giving Alex an Institutional Day. An Institutional Day is the kind I imagine Alex could also have more than his share of, the kind of day when someone who's worked with the autistic too long without being paid nearly enough parks him in front of a TV until it's time for him to go to bed. I know Alex will never have days like that; the money will never run out for the programs that get him into the world for most of those 4,000 Sundays to come. Nonetheless, I'm his father and he's autistic, and I think about Institutional Days. Jill hates the phrase.
Grandpa arrives. Ned comes over, his coat all ready. Alex sprints up, too. He looks up at grandpa and he looks at us. But it's all over in a few seconds; they're gone long before I can figure out just how I could've taken Alex along and still been home in time for Marla. "Alex," I call, "let's get your boots on and go out."
Central Park is frosted, and the snow makes crusty, heavy balls that I try to teach Alex to lob. He plows through a few small snowbanks. I try to show him how to put a face on a huge snowman some kids made, but he darts toward the playground. There isn't time to go to the playground before Marla comes, and he'd get his pants soaked on the slide anyway, and freeze to death on the walk home. "Alex, let's go this way," and I point away from the playground. Alex seems to be running around looking for something. Perhaps he's looking for his day to start.
On the way out of the Park, we spot Marla coming into our building. Time for some hot chocolate for Alex. He drinks hot chocolate now. He likes the windows at Saks now, too.
Jill and I leave Alex with Marla at 2. Grandpa will bring Ned back around 3. Jill and I use our break to, among other errands, buy Alex a tiny toy fire truck. When we get home we give it to him, and Ned has a fit and tries to bury himself in his bedroom. I try to explain that Alex had a bad day, "institutional" being kind of a long word for a 4-year-old, especially if dad is a little scared to think about it for long.
Then, for some reason I may never understand, Ned tries to tell me through his pillow that it's his fault that Alex had a bad day. "No, Ned, it wasn't," I say. "You wanted to take Alex out with you, remember?"
Oh yeah. Next Sunday, I'll maybe listen to Ned. (December 2005)
Alex used to give us quite a fight - often in the wee hours - over drinking medicine. Jill and I used to have to haul him into the bathroom, hold his hands down and practically pry open his jaw, tip his head back, and hope not too much of the cherry-flavored goo or whatever in hell we were dealing with in the middle of the night went down Alex's throat and not down the front of his T shirt. When we'd finally be done, he'd stick his tongue way out and wipe it with his fingers. "Down the hatch!" Jill would always say, while I sat on the toilet bowl and remembered how pilling our long-gone black Burmese Mimi used to be a clinch compared with this.
Long after chocolate milk and occasional orange juice had passed Alex's sentries, the Battle of the Liquid Medicine hamstrung us whenever he caught so much as a sniffle, let alone in the desperate months when he needed anti-seizure medications. Forget pills: We'd have to pulverize the Topomax in a little metal cup, dissolve it in water, and hope we could force it down in what nobody would ever mistake as a twice-a-day moment of bonding with our son. (Pills had never been a bonding moment with Mimi, either.)
I wish I could remember when, one day, Alex just drank whatever we gave him. It's been that way for a while now, just as magically he no longer needs diapers (by "magically," I mean Jill did most of the work). Now all we do is hand him the metal cup, and Alex sort of stands there and does the rest. We have a half-dozen such cups, which I think Jill bought in Chinatown.
This breakthrough must have been around the time of ditching the diapers, because one of the first concoctions we gave Alex was liquid fiber. This is a white powder that smells lemony, and after a few moments it dissolves clear in a glass of water. Though it tends to make the water feel a little slimy, Alex gulps it. It's the equivalent of a bushel of carrots or something. I can't read the label without my glasses.
The second thing we started giving him was also a white powder, acidophilus stuff that Jill learned about in an autism support group. Alex still eats like crap - his diet peaks at hot dogs - and this powder supposedly keeps stuff in his gut that should be there. Again, kind of lemony, and he takes it dissolved in water, in a metal cup.
From there, the cornucopia opened wide. Next came kids' liquid vitamins from The Vitamin Shoppe. They come in an old-fashioned, heavy brown bottle like the dreaded ones my mother used to keep around for the red skull and crossbones on the label and the methyolate inside. The vitamins smell and taste like thick mango juice. On the label I see a comforting, if blurry, plentitude of three digits next to the recommended FDA percentages for a little kid. We give Alex two teaspoons. Down the hatch.
Alex's favorite seems to be V8 juice. I glow with his future good health by just looking at the garden patch on the label: carrots, peppers, celery, lettuce too, I think, more veggies than I ate in a year and a half of college, pulverized into a sweetish juice that seems runs like lifeblood itself - just look at the blurry numbers on this label! - until it stops just below the brim of the metal cup. Jill likes V8; so does Ned. I should drink it, too, especially the part that has the carrots.
I feel like a hell of a dad when I pour these things. On a recent blizzard day we had nothing to do, so I gave Alex three lquids - acidophilus, V8 juice, and vitamins. Because of this, I think, he got the runs. "Kayopectate!" Jill responded. "Down the hatch!" Soon I heard rustling in the bathroom, and the metal cup clattering on the tiles.
"Jeff, I need your help on this!" Jill called. We wrestled and tugged, and got him to sip, then drink. Then he stuck his tongue way out and wiped it with his fingers. (February 2006)
These are instructions to the counselors of the camp where Alex will, this weekend, spend the first nights away from his parents and not be in a hospital.
Alex likes Cheerios for breakfast, sometimes two bowls. He likes to watch them with an Elmo video. Alex can dress himself, putting on his own socks and shirts. He can button the shirts, if they have buttons, on his own. He gets two crushed tablets of Topamax in the morning when he brushes his teeth. He can't brush his own teeth yet. He also doesn't spit after rinsing his mouth with water. It would be good if you could teach him to spit.
Outside, Alex will run away without warning, even on snow, and trying to catch him is like trying to catch a dragonfly. He likes to play in the snow and cold until snow touches his skin, at which point he will start pulling you toward home. We have many photos we can show you of well-intentioned jaunts into winter, hauling him on sleds or letting him scamper up snow banks. In most of these photos, Alex's mouth has just begun to curl down at the sides, and the furrow has just begun to deepen between his eyes. Such trips in the snow is how we first got him to drink hot cocoa.
During the day, he likes to snack on crackers. Saltines are his favorite; he will eat an entire carton if you let him and are willing to sweep up the crumbs. He also likes Wheat Thins, pretzels sometimes, and original Goldfish. During the day, we also try to give him liquid vitamins and fiber powder mixed in water. Sometimes also V8 juice. This liquid stuff is going pretty good.
Lately, he will sit down quietly, munch crackers, and flip through the pages of big picture books. He loves being read to, and has memorized Tom and Pippo Go Shopping and Tom and Pippo Read a Story. He has been walking around the house murmuring parts of these works to anyone who will listen. If it's Pippo or some other book he's intimate with, I will read a little of each sentence and let him finish, then point out a word and tell him how to spell it. We were surprised to learn from his teacher the other day that Alex has held the flag during the Pledge of Allegiance and recited the whole thing, and also smacked on the arm a boy who neglected to stand. We are sending some of his favorite books, videos, and CDs.
He likes music, too, and will sing, sort of, the entire "Star-Spangled Banner," especially enjoying "the rockets' red glare" part. If you take him to a Yankees game, I'm sure he'd enjoy the very first part, anyway.
Dinner is usually chicken or hot dogs. At school, he has also eaten a little roast chicken and sometimes the meat from a hamburger. We give him Hebrew Nationals (again, another reason he might enjoy a Yankees game), fried up in a pan and cut into little pieces, which he eats with his hands. He then washes his hands, and has a Balance Triple Chocolate Chaos bar, also cut into little pieces. These are usually the last things he eats in the day.
Alex likes to sit in the bath and drink directly from the faucet. Often, he doesn't play with many toys in the bath, but just lets the water run over him. He'll tell you if he wants it hotter or colder, which is nice, as my wife thinks talking doesn't come naturally to Alex.
Alex brushes his teeth much as in the morning, and again takes two crushed Topamax tablets and, for sleeping, a melatonin capsule, the whole powder mixed in a little metal cup. For bed, he likes to wear underwear shorts and a loose T. He likes to suck on a binkie, and fondle a silky old T of my wife's. He likes a story sometimes, to be sung to. He often gets up in the middle of the night, which is why his mother and I are really praying this weekend camp thing works out.
(Alex did well at camp. He reportedly had a couple of "emotional" moments, one of them presumably being when he light bit a kid over a toy dispute. Seems worth three good nights of sleep for his parents.) (February 2006)
All the week before Alex is to leave for nearly four days of weekend sleep-away camp, Jill tells everyone how I'm worried. She tells how I'm upset, how I'm scared he'll get up there in the woods among strangers and burst out crying, how he'll be left to bawl for hours while we get him back home. How I'm worried that Alex, at scarcely 40 pounds and at a tender 7-and-a-half years old, just isn't ready. How I imagine we'll get the call about Sunday morning.
Jill says good-bye to him. At the door of the bus, I prepare to board with him and escort him to his seat, cuddling him until they order me off. I'm prepared to do this. Instead, at the sight of the stairs of the bus he snaps free of my hand and bolts inside. I see him take his seat, and watch us impassive through the tinted glass until it's time for the bus to pull out and the big front door hisses shut.
Jill turns to me. Her cheeks glisten in the light of the streetlamps. "My bear!" she sobs. "My little bear! I asked him for a kiss goodbye, and he said 'Kiss good-bye!' and ran onto the bus! My little bear."
The little bear is off on his first nights alone and away from us without being in a hospital. We bought him a turtle suitcase - spotted by Aunt Julie in a shop near her office - and the night before her BREAKDOWN Jill spent labeling shirts, snow boots, tiny underwear, and everything else in permanent fine-point black. I photocopied his Tom and Pippo books in case any counselor can spare a minute to read to him. We packed three sweats and four T shirts (labeled!), Zip-Loc Baggies for dirty socks, two binkies, the metal cups from which he must drink his nightly medicines. When the turtle was stuffed, the rasp of the zipper cut right across a period of our parenthood.
The next night, I misjudge when we're supposed to show up at the community center at 103rd and Columbus Avenue, and we have to kill an hour. Alex keeps pulling me toward the center's door. Ned wants to throw his hat up in the air and catch it. We line up to check in with the camp director and the nurse. "Okay, problem," says the director, looking at our carefully labeled baggies of Topamax and melatonin. "We can't take these unless they're in a medicine bottle." We say Alex loves saltines, and that we've brought some. "If you've got saltines, I'll take'em," the director says. I think he looks like a warm version of Steven Spielberg.
There are large boys going to camp, goliaths who've been going since Alex was still fed through a J tube. All the moms who are dropping off their quiet, rocking, huge sons say the kids love the camp, and having been sending their kids since they were nine or ten. No mom we talk to started sending their kids at age seven.
One big boy shakes my hand with a feather grip. Another, Robert, seems to have made himself an honorary counselor. He sort of takes Alex under his wing. Robert talks a lot. Alex still pulls me toward the center's door.
All of a sudden the bus is pulling away. I see Jill's shining cheeks, and I see Alex in the bus window. He is just looking. I see Robert in the seat behind him; Robert's jaw is moving incessantly, probably with advice and encouragement for Alex, who appears to pay no attention.
Ned, Jill and I eat dinner in a Chinese restaurant. I check my cell phone frequently to make sure it's on. It is. No calls. We sleep well, mostly because lately Alex has been regularly busting in during the wee hours. From a neighbor we borrow floor mattress for Ned, so he can sleep in our room.
I call next morning. "Is Alex curious by nature?" the director asks. "When he runs away, is it just to run away or just to run? Will he stop?" He had a couple of "emotional moments," I'm told, but mostly he's just curious. It's frigid, so the camp is indoors this time. The director says Alex is tossing balls in the gym.
"Do you think he'll be okay?" I ask Jill half-way through that silent Saturday. "No despairing predictions," she requests. What happens if one of us just needs reassurance? I ask.
I call twice Sunday. The first call, they say he's doing well. The second call, I leave a message and forget about it, and when they return the call that afternoon while Jill and I are out (at bars!) and Ned is home with the babysitter, we get scared. Jill hugs the cell phone to her ear, then I see her give one crisp wave of her hand. He's okay.
Monday comes. So does the bus, a few minutes late, and again I see Alex, the same expression on his face, through the tinted glass. He doesn't seem to see me until I leap up and down and wave my hands in front of his window, then I see him wriggle out of the seat and bolt for the door.
He's home. We speak to a couple of counselors who worked with him. He bit a kid - not hard - over a toy, and ran around a lot turning out lights. "He's very independent," notes one counselor. He is. Now more than before. (February 2006)
Jill got a call this morning that Alex had cut his eye at school. When I called the school, nobody knew how it happened. His teacher, Jane, had a theory. "There's a little girl in the class next door who brought in a toy car today," she said. "I think maybe something happened over that." Alex had a half-inch cut by one eye. Sounded like an accident to me: When you go to scratch someone's face, I reasoned, you generally set to with all nails.
It also followed that Alex hadn't hit anything like a table or chair, since when he bumps his head or stubs his toe he runs to the nearest grown-up he likes and says "Bump head!" or "Bump foot!" and sticks the damaged part near the grown-up's hand to be rubbed. "No," said Jane, "he didn't do that. No crying either, not one tear. He just kept trying to take my hand and kept saying, 'Car! Car!'"
Good for him! But Alex is learning a hard lesson about grabbing other people's stuff. At sleep-away camp recently, for instance, he bit a kid over a toy. "You know," said a counselor afterwards, "not hard. Just light."
Dear Reader C. thought this was okay. "I'm glad he's got a sense of standing his ground and defending what he views as his rights and property," C. says, writing so well because she's British. "I'm glad he's applying a gradient scale whereby a dispute over a toy is answered with a bite, not hard, and I hope that if someday someone tries some really serious mischief, Alex will answer with some really serious bites."
Such bites Alex used to reserve for Ned, often with no provocation yet equally often with deep, deep aftermaths, semi-circular and pink. This must have been after he realized that he couldn't necessarily keep toys from Ned, though he sure did for a while. I can still see Ned as a baby and Alex as a tall toddler, Ned bouncing on his toes and stretching for what might as well have been the clouds as Alex lofted the toy with one straightened arm, without attention or care or effort, merely keeping his eyes on "Elmo."
Then Ned grew in strength, height, wants, and cunning. Skirmishes flared along the brothers' border. The complaints, as Alex remains mostly non-verbal, were and are Ned's, and have evolved from the sobbing "He took my toy-oy-oy-oy...!" to Sgt. Ned's bark of "Alex! That's mine!" to, at times, Ned outsmarting Alex for a toy. Ned also sometimes strikes back when Alex grabs at him, but sometimes too he just turns to us and cries. Either Ned doesn't want to hit his brother, or he's still kind of a baby, or a little bit of both.
Alex has moved into the world where other people have stuff to grab. For almost all the time I took him to playgrounds, he made a swipe for other kids' toys. Once he bit a little girl who had a toy he wanted; once he grabbed a toy from a baby. One mom on a playground called the police on Alex. The cops told our babysitter she was going to have to watch him more closely, and the mom told our babysitter that kids like Alex weren't even allowed on public playgrounds. I've often thought about making a joke about this, but I shouldn't, because sometimes if a cop tells you to put up your hands and you don't, bad things happen, and Alex may never understand a single order from a stranger to put up his hands, and he won't always be seven years old.
On the other hand, there are lots of people like that mom, and not all of them want cops around when they get a nice-looking kid like Alex alone for some serious mischief. Then Alex may learn the difference between grabbing other people's cars and someone grabbing his own, and at that moment he will have my permission to bite, bite, bite. (March 2006)
When Alex gets a cold, his nostrils glisten for days, often after deep sneezes. His tongue keeps flicking upwards, too, and between that and wiping Alex will often grow himself a mustache of pink skin above his upper lip. He coughs, and after a few tries starts retching to get the mucus out. Alex often can't stop himself until he's brought up something we all wish would come out his nose.
We've been trying for years to get Alex to blow his nose. "Until a child is old enough to blow, mucus from the nose drains into the back of the throat and is swallowed into the stomach," says a primer on the site of the Riley Children's Hospital in Indianapolis, which for some reason pops up first on Google when I type in "refusal to blow nose." "By clearing the mucus with a nose syringe, you can make your baby more comfortable." We used to do with Alex when he was younger, with a process termed "suction" and using the only piece of his medical equipment made by Hoover.
I believe Alex's lungs could put him back in a hospital. "Nose blowing" is an official goal of Alex's, right there on his IEP between "Eating with a utensil" and "Will learn to toss a ball back and forth." Judging by how cold dog him, they fare in school no better than we do at home. When the boys went to school, I knew they'd cart home colds. Have you ever seen a kid with a cold? They wipe their noses on anything or anyone handy, hack away without covering their mouths, leave tissues around like poppies, and in general seem to need to fill their classroom with more germs than a frat house on a Sunday morning.
Alex, blow your nose! I take the Kleenex and gently pinch his nostrils to squeeze stuff out. I try to hit the basket with the wad of tissue. I try to remember to wash my hands.
He tries to clear what I think was called in my childhood "post-nasal drip" by coughing, sometimes bringing the stuff into their mouths, then swallowing it. Great substitute for nose-blowing until they swallow too much, then blammo!
Did you ever try to teach someone, actually teach them, how to blow their nose? I thought this morning, as I was wiping a puddle of Alex's puked-up mucus, how it must be like teaching a duck to swim: If it doesn't come naturally, you're in for a hard time. I don't expect the kind of ejection I get most mornings when I just come off the subway - must be the rattling that loosens the stuff - and I fire a one into my handkerchief (don't look at it!) that leaves my nose so cool and clear I feel I'll never have to blow my nose again. If Alex could do that once a month, he'd be home free.
This is a big thing for many parents. AOL's Parentschat puts nose-blowing alongside dressing, biking, and skating for necessary kindergarten skills. In her book Taking Care of Myself, Mary Wrobel ranks it with bath time, doctor's visits, and shaving.
We, mostly Jill, have made progress. He will fetch himself a Kleenex. He will hold it to his nose. At that point, however, mystified, he will either hand me the tissue or absently let it flutter to the floor.
Readers have suggested various sensible methods to get him to blow it. We've tried getting him to blow the feathers and the ping-pong balls (I had never before in my life bought ping-pong balls: $2.49 for three in the Herald Square K mart) across the tabletop. I've held his hand under my own nose and blown on it (when I don't have a cold.
Alex will often lay on his stomach in the bath and blow bubbles with his mouth. We've urged him to blow bubbles with his nose. Sometimes Ned's in the bath with him; Ned's an accomplished swimmer. "Ned," I'll say, "teach Alex how to blow bubbles with his nose."
Through the nose, Alex, through the nose! Ned tries. We all do. We all try to remember to wash our hands. (March 2006)
It is a long tradition in the Jewish faith that Alex has a hard time with Passover.
The Seder dinner, for those of you who did not marry Jill, is a dinner of several courses prefaced and concluded by the reading of Jewish history from the Haggadah, a book covering the story of the Exodus and the origins of the dinner and its stages. The length of the dinner and the seriousness of its tone can vary, but, generally, participants taste bitter herbs dipped in salt water, and break and eat matzoh, among other gestures to commemorate the suffering of the Jews in ancient Egypt. The ceremony ends with the exclamation, "Next year, in Jerusalem!" (Jill's family has traditionally added, "Next year, in the Bahamas!" or some such phrase. This year, Jill, who'd prepared the meal, added, "Next year, in somebody else's house!")
Children figure highly in the Seder. They receive little gifts at the end of the dinner, and are called upon to ask four questions pivotal to the celebration. The questions include: "On other nights we eat bread and matzoh. Why just matzoh on this night?"; "On other nights we do not eat bitter herbs. Why do we eat bitter herbs on this night?"; and the biggie, "Why is this night different from all other nights?"
I'm not Jewish, but have been at this long enough to spell many of the above words without consulting a dictionary or Jill, and to recognize that an autistic boy gone amok is a hard thing to tone out during such a meal. Alex has never sat for the dinner. On past holidays he's crashed through the kitchen, tried to pull people away from the table, broken, I think, two things in other rooms, and overall contributed little to re-telling the history of any people anywhere. Some of those Seders may not have been different, but they were difficult.
I approached this April's Seder with shivers. Jill had worked for days, from cooking turkey to shopping for dishes to picking a tablecloth to borrowing chairs and adorning the long table with a centerpiece of grass (spring thing). We were expecting nine guests, a split of family and friends.
Ned sometimes sits at the table; he's been known to get through the whole meal, in fact, and this year could even ask the questions in fledgling Hebrew. Alex, not so much so.
"Are you going to ask him to turn off the TV?" Aunt Julie asked as the meal began. Alex was watching an Elmo video, the volume low. I probably didn't answer her.
The reading commenced, the bitter herbs showed, and somewhere in there Jill lit some candles for the table. I was on the end of the table facing our living room, and over by the TV I saw Alex rooting through the toy fridge. A few minutes later, after Jill had sat back down and the candles glowed over the grass, Alex appeared at our elbows with one of the fist-sized wooden birthday cakes we keep in the toy fridge. In the cake was stuck a single candle.
"Birthday!" Alex said. "Birthday!" Then he started to sing "Happy Birthday." He kept coming back, placing the wooden cake beside various diners and exclaiming "Happy birthday!" several times. Then he bopped in and out of the chair we'd left for him, then he darted into the kitchen. All the while, however, as Elmo whispered in the background, he kept returning to the table.
By my second helping of turkey and grandpa's filet mignon, I began to sense that Alex kind of knew what was going on. Alex does understand a few things about being Jewish; on Friday nights he's the first at the table with the candles, crying "Shabbos! Shabbos!", referring to the Friday night ceremony commemorating the week by lighting candles and buying a pay-for-view kids' movie. Jill has also tried to find a special-needs school for Hebrew education.
He's ready for one. "Alex can say, 'Why is this night different?'" Jill notes. "I think that next year if he can write it, it will help him say it." He certainly understood the end of this year's ceremony, his ears perking like a fox's at the word "presents." As the night wore on, he also settled on grandpa's lap to drift off, an unprecedented move.
"I think Alex looked different," said our friend and guest Joe, a week later. How so? "I don't know," Joe said. "More together, I guess. Calmer, I guess. Just, different." (April 2006)
Alex has been excelling at writing letters and words, so much so that I often set aside the math homework in favor of writing exercises. Lately, I've even used math homework as a warm-up and saving the writing for last.
He bores down on writing, and I figure he'll stay seated through the math for the same reason that my high school sociology teacher saved thanatology -- the study of death -- until the spring, when we partying seniors stuck around for bus trips in the softening air to a funeral home, cemetery, and to a crematory where somebody forgot to erase from the propane tanks the slogan of the local gas company ("Happy Cooking!"). Point is, kids don't to walk out on what's spellbinding, no matter how much the spring air or "Elmo" tapes beckon. So writing has become the treat.
The math homework sometimes doesn't look challenging, anyway: tracing of numerals, or often numbered connect-the-dots that produce pictures of clowns or animals, which Alex will then color a single color by scribbling madly all over the page with no more regard for the lines on the paper than a drunk has regard for the lines on the highway. He'll color every drawing - a house, a shoe, a donkey - the same color.
Alex can make numerals quite neatly, but we've wondered if he knows what they mean. Math, his teacher has confirmed, is an abstract concept. He can write a four (he can also make a four with his fingers, along with several letters; I tried a four, too, but got a cramp), but he may not understand what a four is, even when goaded by four saltines. For some reason, I go into this thinking math is going to be a tougher nut.
Alex came home the other night with a sheet of math homework that looked tougher. It was drawings of little shoes. The shoes were in pairs, and the pairs were grouped in boxes. The student was to total the shoes in each box by counting by tows. The first box was easy: five pairs of shoes, and a dotted "10" Alex easily traced in the corner of the box.
The next box contained two pair of shoes. "Alex, four," I said. "Four." He drew a four! The next box contained seven pair of shoes. "Alex, look," I said, "two, four, six, eight-"
He mumbled something, proving to me that he wasn't paying attention. I took the marker and touched his cheek with the cap. This is how I keep his attention when necessary. "Alex, pay attention. Two, four, six, eight, ten-"
"Fourteen," said Alex.
"No, Alex, listen. Two, four, six-"
"Fourteen."
I started over slowly. "Two. Four. Six-"
Alex grabbed the marker from my hand. "Fourteen," he said, and he wrote a fourteen. There were three more boxes on the sheet: four pair of shoes, five pair, three. Alex wrote an eight, a 10, and a six in the correct boxes without me saying a word.
"Jill!"
"What?"
"Alex can count!"
She came in, looked down at him, and smiled.
Ned's more of a question guy ("Did Dr. Seuss want people to think he was doctor?" "Why are sea horses called 'horses'?" "What's under my tongue?"). Alex has a number of answers left to find, of course, so it's a good thing he's turning into an answer guy. Ahead for him is addition and subtraction, division long and short, figuring out a checkbook, and coloring within the lines. (The next night, he comes home with coloring "A" homework with an alligator, ants, and an apple on the page; I make sure he uses green for the alligator, red for apple, and black for the ants).
I need to figure out how to make a "4" without cramping, and learn what is under my tongue. (May 2006)
Funny, after what seems like a lifetime, to still be guessing about what Alex wants. When we're doing math homework, for instance, I still use hand-over-hand to help him write "6" under the "4+2." I can feel his hand move under mine, and it sort of moves the right way but sort of doesn't, and Alex doesn't utter a sound, and I have to wonder: How much of me is making that 6?
Alex doesn't utter a word, either, as another stint at overnight camp approaches. "Alex, do you want to go to camp? Be with Cherokee?" (a counselor) "Sleep in the Chestnut Lodge?" This is a special needs camp up the Hudson, where Alex has tried two weekends before, during which his parents slept soundly. The first weekend went well -- his enthusiastic, heartrending, kiss-off of a goodbye as he boarded the first bus is a matter of record -- but the second trip began with him wailing without pause at the community center where the bus picks the kids up, and ended with the head of the camp approaching me when Alex got off the bus upon arriving home.
"We have a week-long trip coming up," the director said. "I don't think he's ready for a week. He cried a lot this time. I mean mostly he was okay, but I don't think he could do a week." We headed home, mom and dad silently torturing themselves for not heeding his tears and wails, for not bringing him home before that second trip ever happened, and Alex skipping home, hauling his turtle suitcase.
Kids cry at camp. Except, as many have volunteered since hearing of Alex's woeful second weekend, those kids are often a lot older than 7. Alex's tears in this matter bring us face to face with his lack of language. He has gestures, he has expressions, smiles and tears, but few, few words. Jill has said that Alex having so much going inside and yet so few words is a curse. Understanding him can be like trying to speak a foreign language, except no linquist or translator exists to help us.
"One of his Early Intervention therapists used to say Alex had 'inner language,' and I used to think she was full of shit," Jill recalls. "But maybe she wasn't. Aren't you happy he has this much going on?"
Yet, is something happening at camp he can't tell us about? Alex is a handsome boy. Rape stats bubble up in my head. The autistic are victims in a lot of dark places in this world. I ask Ned why he thinks Alex doesn't want to go to camp.
"Because he'll miss you and mommy," Ned says.
So, as the third and final weekend of the spring approached, I let Alex know it was okay if he didn't want to go to camp. "Alex, do you want to go to camp? Be with Cherokee? Sleep in the Chestnut Lodge? It's okay if you don't want to."
"Camp?" Alex would say, days before camp. "Camp?" Once he even rolled out the turtle. We must tune in to the gestures; certainly the appearance of the turtle was a clue. So we agree to ship him off on Friday evening, with a return on Mother's Day afternoon.
On Friday about 5:30, just to be sure: "Alex, do you want to go to camp? It's okay if you don't want to."
"Camp?" He grabs the turtle, marches toward our front door, stops, turns to me, and disintegrates into tears, his mouth a twisted rectangle.
"Alex, you don't have to go if you don't want to!"
He stops crying. He grabs the turtle, and we're off.
The community center is crowded and noisy, and again Alex switches from calm and set-faced to wailing and rectangle-mouthed. Off and on. Another autistic camper, Robert, remembers Alex and pats his head, and booms out a "Hi!". Set face, rectangle, set face. "Show Alex the bus," Jill suggests.
We walk to the bus, which is tall and sleek with a side as big as a cruise liner. Alex yanks my hand. Off and on, off and on. I feel he wants to do this, wants to, but I have to keep wondering how much of me wants to send him, wants those two unbroken nights of sleep. How much of me is making this 6?
We take a moment with the camp director. "I think he's going to have to push through this," the director says. "The question is, do you want him to push through it now, or a year or so from now? If it was me, I'd say give it a shot." He looks at me. "But I'm not his dad."
"Let's do it," says Jill, before she skedaddles to the talent show at Ned's school and leaves me alone to put Alex on the bus. Still, she stipulates, it's my call until the last minute.
I steer him first toward the grocery store to buy a box of saltines and a couple stacks of Chips Ahoy. "We're just going to the store, Alex. We're not getting on the bus yet." It feels like that time when he was four months old, deep in the hospital, and the minutes slowly ran away out they put a tube down his throat again.
At the bus, Alex is dry-eyed. I get him to the stairs into the bus, where Robert takes his hand, and they disappear inside. I start to walk away; I see a mom. She looks like a seasoned camp veteran, and I need a seasoned opinion.
I ask her if I should stay so Alex should see me for a minute through the tinted windows of the big bus, or I should leave. "You should leave," she says.
I do. I call Jill. "We have a launch!" I tell her. "He wanted to do this. If he'd done nothing but cry all the time we were there, if I hadn't sensed he wanted to do this, I wouldn't have put him on the bus. But he wanted to do this."
The weekend passes. I try to not look at his rumbled, empty bed. Ned says he wants to sleep with us because Alex is gone. Instead, Ned passes out both nights and sleeps through. So do we.
On Mother's Day afternoon, we're late to pick him up, but when I run up there, a kind-looking woman has her arm around him. She's whispering to him as I approach. I ask if he cried at all this weekend. She says no. Jill and Ned are half a block or so behind me. "Go tell mommy Happy Mother's Day," the lady instructs Alex. "Happy Mother's Day..."
Alex flies toward me, then toward Jill. "Happy! Happy!" he says. I get to haul the turtle home. (May 2006)
For a long time, Alex's behavior has helped me dread family events. I started dreading them in elementary school, but that had little to do with Alex. Still, themes remained the same: people you see twice a decade, politeness abounding, judgement silent and voiced. "That kid has a long way to go," one of Jill's second cousins, I think it was, said of Alex six years ago.
I couldn't blame anyone where Alex was concerned. If you don't live with autism, its shadow darkens many a get-together that if not jolly -- and how many family get-togethers are "jolly" in the way of, say, shots parties? -- then at least everyone could act normal until it was mercifully time to go home and complain.
Alex never broadcasted on that frequency. He would freely leave the dinner table, or never come to it at all. He'd screech in solemn moments of religion, burst into wails in happy moments of birthday cake. Wherever his mind was at those times, whatever he was trying to do or say, it couldn't be construed by many as overly appropriate.
When, Jill and I wondered, to ourselves and often to each other, would be get it?
This past Passover and Father's Day convinced me that perhaps he is getting it at last. Not that he sat at the table and chomped his hot dog and discussed that day's Times or AOL celebrity news, but he ... what? Well, for one, he tried to participate. The candles at Passover brought him running with a toy birthday cake and cries of "Birthday? Birthday?" followed by the song appropriate for the celebration Alex believed he was witnessing. On his birthday, Alex didn't touch the ice cream or cake. But he sat in the chair at our living room table until every one of his presents was unwrapped. Then he darted off to watch "Elmo," but that could have had to do with "Elmo" being one of his birthday presents.
Father's Day seemed the plainest evidence. "How's Alex doing?" I asked Aunt Julie just before lunch, as I returned from the dock where I'd been fishing with Ned. "Good," she said. "He set a place for himself at the little table." That wasn't strictly true, because when I got inside I saw that Alex had also set a place at the little table for Ned.
Last time in this lake house, Alex spent a whole meal camped in the basement over an "Elmo" video. I forgave him that because of his behavior earlier that day in the rowboat: a model passenger in his hot life jacket, gazing at the islands drifting by, watching daddy tug at the oars, dipping his hand in the water, tossing grandpa's bottle opener overboard.
Two places set? Even if Aunt Julie had helped him (bless her if she did), could the maintenance be lessening? True, we do get to eat out as a family now in places other than Popeye's Chicken - or at least we did until Alex figured out that any coffee shop that serves soup will also have saltines, which is all he'll eat for dinner.
The only real reason we watch him in the bath anymore if because he'll close the plug, let the tub fill, and kick up a flood once the level gets high enough. Usually, he squats under the faucet and drinks. I don't think Alex so much likes the taste of bathtub tap water as knows that Ned would also really, really like to sit under the facet. That sometimes spills into the only other reason we really have left to watch the boys in the tub (hitting).
Alex also used to sleep through one night a week: He's now up overnight maybe one night a week. He is an early riser; I often wake up at 5 to see the crack of light coming under our bedroom door from the living room, where I will stumble out an hour or so later and find Alex kneeling on a cushion in front of "Elmo," an overflowing bowl of saltines on one side, the empty wrapping of a saltine stack on the other. As I stumble out Alex pivots his head to look at me. "Is this okay?" he seems to ask. "Is this okay?"
If he wants to get up at an hour fit only for the U.S.M.C., be my guest. Just don't unlock the door and scoot out of the apartment. I hear a lot of autistic kids do this. Alex hasn't. So far. I think we still owe Grandpa a bottle opener. That too is part of life when you're the parent of an autistic boy, as is having a bottle opener in the boat in the first place.
This Father's Day, Alex didn't touch his sliced up Hebrew National, didn't sit in the very spot he'd prepared for himself, alongside Ned. He munched pretzels (drinking liquid vitamins and Benefiber is among his tangible improvements of the past year), and sat in the armchair on the other side of the dining room, watching "Mother Goose." But watching "Mother Goose" on the upstairs TV, near the meal and near the family. He didn't bolt or scream, but watched and munched. Ned didn't sit in his prepared spot, either. (June 2006)
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