I can still see that beach in Maine. An old high school friend sat with Ned on the sand while Jill and I took turns with Alex in the surf. Alex would dash in and out, splashing up to his knees. I'd whirl him high above the foam, milky stuff, frothy and warm. He loves the ocean, we knew then. The following summer, we went to Coney Island, and without stopping Alex ran into the ocean with his clothes on.
Alex has seen a lot of surf: Coney Island, Jones Beach, Maine. Cape Cod, though, is probably where he's gotten the saltiest. Much of the surf is just plain big, green and white walls charging the shore and towering over my little boy. His first time on the Cape, even as the sea erupted and staggered him, Alex ran deeper. And deeper. A green-and-white dashed him head to toe, and then he retreated to the sand and looked for a minute at the great sea, and thought things. Then he ran back in. I always thought all beaches were the same, but Cape Cod beaches vary as much as each breaker. Most fun is the shallow beach, Skaket, with its inch-high whitecaps and where even at high tide Alex can run out a hundred yards and still not have the water reach his chest.
Loving beaches is new to me. I'm pale and thin and professionally spastic, and I've always felt that beaches were for the rippled, tan lay-abouts. I also grew up in Maine, where much of the coastline is red granite. Junior-year summer in high school, I think it was, I stood on one of those red boulders and looked up to see a Poseidon-class breaker coming down on me. "DO YOUR WORST!" I bellowed, and for the next three hours had the unusual experience of being wet to the skin, in sopping clothes, on a cloudless day. I don't know whatever happened to that wave, but I hope it's happy.
My new beach attitude comes from adding kids to sand and surf. My boys are also distinct at the beach. Ned is scared of seaweed, for starters (after he told me that, I took my first real look at seaweed, and I see his point). His beach persona is summed up in two snapshots we have of Alex in a towel on Cape Cod. The pictures were snapped seconds apart, and in the background of the first Ned has a little football and is fading back to pass. In the next picture, all you can see is Ned's feet and legs pointing skyward, and a little spray of sand.
Last year, on the last day of our time on Cape Cod, we stopped at a beach on the way out of town. It was a cold day, in the 50s. Ned huddled on shore, sensibly. First thing Alex did was strip off his sweatshirt and pants -- that's what you do at the beach, isn't it, at least after the first two times you dash in with all your clothes on? -- and the sea chill slapped his body. He collected himself, and together we waded into the surf. Big surf, too, surfer's surf, Atlantic side, still cold from winter, the black heads of seals bobbing far out and laughing at us.
Here came the green walls to explode around our thighs. I looked at Alex, and I roared like a Klingon (DO YOUR WORST!). Alex laughed and laughed, and tightened his arms and neck into a fierce grin. Fierce!
Alex and I are on the same page in the sea. I know it. I know Alex likes things, such as saltines, Goldfish crackers, Go Dog Go and Green Eggs and Ham, and still an occasional hot dog. Yes, he dashes into the sea. But the meanings of the sea can vary in each of us like waves, and I wish Alex could tell me what he likes about it. His words would be as distinct as each green and white wall. (July 2006)
This note from the occupational therapist came home from school, addressed to "Alex's Mother:"
"I worked with Alex on typing today and I was amazed by Alex's great work. Thus, I just want to share this great story with you. It was Alex's first time working on typing with me. We used a program called, 'Type to Learn Jr.' Alex was able to follow a given direction, able to look at the computer screen to see what letter he was supposed to type, able to scan the keyboard and was able to use both his hands to type each letter. He was able to focus on the work for 20 minutes independently. I thought that this typing program would be great for Alex, thus tried it today, and Alex was amazing. Thus, I will continue to work on typing with him..."
"That's a keeper," said Jill. "Is there a date on it?"
Wow. Typing. Jill and I are to thank for this, I guess, except that we usually tell Alex to leave the home computer alone every time he nears the keyboard - but to be fair, a few months ago he did pry off the spacebar and the N. Alex has often watched Jill and me use the computer at home. But if that had been his only guide he probably never would have typed letters and instead just lost at Freecell. Seeing what letter I'm supposed to type and focusing on the work for 20 minutes independently is also a lot more than I can do on my day job most of the time.
There's no doubt Alex is ready to tackle the writing chores of, incredibly already, third grade. I worked with Alex last spring on printing words one letter at a time, line by line, hoping that by this summer I'd be able to dispense with hand-over-hand and just guide his wrist. I have also always believed that the only way to learn to write is the same way Lincoln wrote "The Gettysburg Address": sit down at the desk, pick up a washable colored marker, and get to work on the paper. That's what Alex and I have been doing, one line at a time, the distinct slashes and curves and dots of one letter at a time.
What I've distrusted about the concept of a computer keyboard to teach writing is that to make an F, you take your index finger and bring it down on a button. To make a G, you take your index finger and bring it down on a button, To make an N...and so forth. But I favor any device or tactic that helps him tell his story; I long to know what's in Alex's head, and what he remembers.
He's always had a thing for letters. He sits silently over books for long times, and often pulls then out and flips through them when he almost, it seems to me, thinks nobody's watching. Maybe it is time for typing.
His concentration is sure improving. The other day he sat for 20 minutes over sets of checkers and chessmen at a table while Jill and I talked to people at a conference (Alex placed the checkers all over the board, then put chessmen on top of each and announced that he was making "birthday cakes"; try it sometime -- you'll see his point). Last night, he was bored after dinner and dug a new jigsaw puzzle out of the closet. He squatted over it for three-quarters of an hour, unmoving and silent save for softly clicking the pieces together. It was a tough puzzle, too -- three German Shepherds and a bag of dog food on a back porch -- but he never let up until he got to the end and discovered that pieces were missing. Alex reminded me of my mother, who had the same discipline to keep her nose down and her eyes on the job.
Last year, a neighbor gave us an old Mac, which we put in the boys' room and haven't touched except to open the music application and find out that our neighbor must have had a big thing for Petula Clark. Last night, I clicked around trying to find the word processing, figuring we could set Alex up with a blank screen and a 24-point font, and let him type away. I couldn't find the word processing. Maybe Alex should help me. (July 2006)
Dear Reader Cassiopeia -- I do mean "dear," as this London lady has been writing nothing but praise and encouragement since the first day she e-mailed -- has made several comments recently. "It would be interesting," she writes, concerning Alex's new work with a keyboard, "to see what Alex decides to type. Sometimes I wonder about his universe, and about things you haven't written about. Such as, does he like to play with a ball?"
C. is on target here, as I've dabbled with what I know is a good skill/play activity for the autistic. Batting or throwing a ball back and forth encourages conversation, they say, in that it demonstrates to the autistic the essential back and forth of conversing. I have tried to get Alex to roll or toss a ball back to Ned, often in the bath, and it seems to tickle Alex in a way he doesn't yet comprehend. I must stay at this.
"How does he react when one of you reprimands Ned in his presence?"
He pretends to continue to be absorbed in Elmo, but I think he secretly loves it. Any big brother worth his union card would. I should note here that the other night Alex dug out a photo of me, him, and Ned, taken a couple of weeks ago. He stared at it a while, then rushed over to where Ned and I were sitting on the couch. Alex stuck his bright face close to mind and said, "Daddy! Daddy!" Then he stuck his bright face close to Ned and said, "Ned! Ned!" Then back to me: "Daddy!" then back to Ned: "Ned!" Then Alex's face suddenly lost its brightness while he looked at Ned for a moment, then he hit him. Not too hard. It was really funny!
"Does he move fast from one place to another, or when he's on a mission to gain cookies?"
As I've said before, Alex moves like a dragonfly when he wants to. Cookies can definitely mean he wants to. He's stalled in general on the food front, although the other night Alex brought a slice of watermelon to the table, along with some ends of sliced tomato that Jill had meant to throw out after making the salad. Alex sat at the table and searched the watermelon for gaps and holes, and when he found one would insert a piece of tomato into it. "A food jigsaw puzzle," Jill said later.
"Has anyone taught him yet to ride a bicycle or rollerblade?"
I believe Aunt Julie has tinkered with this in the driveway of grandpa's lake house. I know I say Ned sailing by the living room window up there on the kids' bicycle, with what appeared to be considerable speed. I don't know if Alex has tackled either rollerblading or ice-skating, which Ned is working on with Jill. Alex does occasionally bring Ned's Spiderman scooter into the living room. All in all, I guess, Alex is finding he can move fast enough on his bare legs. I agree. The only thing I keep meaning to teach him these days is to write words such as lion, tiger, or elephant using his plastic toy animals as inspiration.
On the subject of podcasting, C. offers, "Like any new idea, it takes a bit of time for people to get used to it, and then they cannot imagine how they had lived without it before. But people will listen, because both you and Jill really communicate, and both of you say things that have value to others. Two suggestions: towards the end of a podcast, let the listeners know what the next one will be about. This would generate interest and expectations. Invite feedback and read some of it in the following podcasts."
"By the way," C. asks, "have you and Jill had the experience of people who cannot understand why you can't find the time to return phone calls until a few days later, and feel offended?"
I don't know how Jill handles it, but I don't have that problem. Nobody ever calls me. (August 2006)
There it is. Slam. The front door. Maybe it's Jill coming in? I look in front of the TV. No one is there. Alex is out.
I dart out our front door. The stairwell of our apartment building is right across the hall. I yank open the door to the stairs and LISTEN for the patter of kid size 13s, maybe the thump of a door closing, echoing up the walls, like I'm a cop on the trail of a suspect fleeing to the roof. Listen. Alex runs silent as a sub when he wants to.
Alex has never left our apartment building. The first time he got out, he went to a neighbor's apartment on the third floor. We have no idea why. "Missing someone?" the neighbor said on the phone when she called. Most of the time Alex wears a path up the stairs to the 12th floor, where lives another neighbor and friend. This friend has two little girls; those little girls have a dollhouse. "Twelve?" Alex will say. "House!"
The phone rang at 8 in the morning. "Alex was so friendly," the 12th-floor friend, who likes Alex a lot, told us later. "He rang the doorbell before he came in. I asked him for a kiss, and he gave me one."
"Well," Jill said to me, "we have a new kind of problem."
For me, this problem is the opposite of Alex's premature birth. I didn't think too much about prematurity going into that one, and it turned into one of the nightmares of my life. I take this escape business gravely, but so far it's been okay. Not in an isn't-it-cute-and-ignore-it sort of way, but sort of okay.
I have no illusions, though, where it could lead. We know of one autistic teen who's well-familiar to his local police, and who was once found in the middle of the night standing beside a freeway. I also get a daily e-letter called The Shafer Report, a round-up of autism-related news. Rare is the day with no lost-kid story. In most of them, the kid stops at the side of the freeway. In a few of the stories, he doesn't. I've also heard a lot about alarm systems in homes of autistic kids. In keeping with how autism affects a family's world, these alarms are to keep people in the house, not out of it.
"Get a lock he CAN'T OPEN!" Aunt Julie says. Any lock placed high Alex would watch us latch, then fetch a chair to open it himself. Fire regs sensibly forbid a key padlock on the inside of an apartment door, so Jill looks up combination locks on the Net and finds an electronic job that might do the trick. To my knowledge, Alex doesn't know how to use the Internet yet. Meantime, at night we park two chairs inside the front door. Once I put the singing Elmo doll under the chair closest to the door, to buy us an additional moment or two should Alex make a serious effort to get out.
So far, while we slept anyway, he hasn't made any effort. It's always when we're up.
Sometimes Alex's uses flight to test a new babysitter; he's had them scurrying after him three times, his "Twelve! Twelve!" echoing up and down the stairwell. And when we got home from Cape Cod, I was unloading the rental car and Jill must have had her back turned in the apartment. I returned to our floor to find Ned in the hallway. "Alex escaped," he said. I bolted for the 12th floor, a panting Ned on my heels. Jill hopes Ned doesn't come to get sick of this.
That evening, I ran into yet another neighbor in the laundry room. "Did you hear there were there were two kids loose on 12?" she said, bundling her sheets into the dryer. I told her it was "just Alex," that he always goes up there, and that it's like he's visiting friends in a isn't-it-cute-and-ignore-it sort of way sort of way. Her lips locked in an expression of some kind of tolerance, I guess, but the thought struck me, as I manhandled my own sheets, that if Alex gets out a lot I might not want to go spreading it around.
I want Alex to write a thank-you to our friends on 12, for their hospitality. I also thanked the lady on the third floor. "Oh listen," she replied, "if I had a nickel. When my son was little, I left him once at a street fair!"
Oh, I'll be listening, all right. (September 2006)
One of our neighbors has a pit bull. The dog's name is Jolie, and she lives in the apartment across the hall. Alex is often trying to get into this apartment. The door is usually locked.
Alex isn't a thief; he just likes to open doors and look inside. Alex isn't a thief, but it's my frequent fear that Jolie doesn't know this. Alex's sense of personal danger still seems, well, retarded. He'll bolt into strange doorways, fly across driveways, and once he even darted onto Fifth Avenue at about four in the afternoon. He can stop my heart. I can already hear the scream of brakes and the thud.
"Alex don't do that!" we have told him over and over and over, on sidewalks, in our hallway, everywhere in fact that there are doors with unknowns behind them. He just has a thing with knobs. Twice I think he's bolted into other people's apartments - once busting in on an older couple who Jill believes might have been having sex - and twice he's been forgiven. He's a nice little boy: Who wouldn't forgive him? For now. What happens, I wonder, when he's 17? What happens even now if he busted into the wrong door, a door behind which is a nervous person with a knife or worse, or the right kind of dog who's expecting her owner to come through the door and who's had a bad day?
We've kept Alex clear of Jolie, who is a female pit bull ("pit," their owners seem to call them, in a tone part secret society, part security, and part threat). She's as tall as Alex. She's strong and fast. Alex is quick, but she's animal-fast. She's chiseled; pits are chiseled. She has the jaws of a "pit," which you may recall from news stories in the late 1980s is built to exert monstrous leverage and can break a child's leg bone with one good snap.
Sometimes I see pit bulls chained to parking meters over on Madison Avenue, which in our neck of Manhattan is far from the world of advertising and close to probably the densest concentration of public housing projects in North America. "Shut up, bitch!" I once saw a guy in a Raiders jacket tell his pit outside the grocery store. He jabbed one stiff finger in the face of the dog, who quickly dropped to her belly and put her chin on the pavement. Needlessly to say, if Alex had tried that, this pit would have likely not dropped to her belly, and her chin would have come closer to Alex's snappable leg.
"Alex do not do that!"
Alex slips out our front door one evening and gets to Jolie's door. He twists the knob. I fly after Alex, thinking how I believe that the apartment's human resident, a sweet lady who lives alone, is down in the laundry room, and who doesn't lock her door when she only steps down to the laundry room. Alex twists the knob before I can grab him and slips inside as if vanishing into a magic wall in a haunted house. I hear a dog bark.
Jolie bursts into the hall, flashing past Alex in a streak of white and dark brown, her muscles rippling. She pulls up in front of me, and lays on her back on the old hallway carpet.
"Hi, Jolie, how are you?"
I find Alex - he's turning on all of our neighbor's living room lights - and haul him back out. Jolie bounces in front of us, then lays down again on her back, her paws up, her big head and muscled rear end twisting until she makes first an S, then a C. She stares into our eyes.
"Hi, Jolie..." I rub her belly. S, then C. S, then C, in ecstasy. "Alex, touch nice." I place his hand on her belly, and together we rub the short wiry fur. Jolie bolts upright and licks Alex's face. He giggles and doubles over, so Jolie licks the back of his head. He giggles and giggles. Then Jolie licks my hand, then she bolts down the hall and it strikes me that my biggest problem this evening is going to be getting Jolie back into her own apartment while Alex is out here to lick. (November 2006)
I was frying Alex's hot dogs; Jill was helping wrangle the turkey out of the oven. The crash came from the room next to the kitchen. It rolled forever, impossibly loud in the home of Jill's cousin where we had come for Thanksgiving.
Amongst the crowd were three of Jill's second-cousins, college guys who happen to love kids. These are dependable young men: One works for the State Department; one is going to be a doctor; I'm hoping the third gives Ned his first big job in about 20 years. The one who works for the State Department appeared. "How bad was it?" I asked, wishing into the hot dogs that this hadn't happened, and thinking that New Jersey hadn't heard such a racket since the Hindenburg. "It was a bookcase," the young man said, probably in the same tone he'll someday use to say, "It was a very bloody coup."
It was a corner bookcase, triangular, holding little more than a small menorah or two and what was later described as a completely breakable swan. Cousin Carol explained that the swan had belonged to an aunt who'd died earlier this year, and that she'd acquired it after the funeral by losing a drawing of lots. Cousin Carol and her husband Sid have told us over and over that there's nothing in this house that Alex could break that they care about. But after the clean up, Sid looked at me with a heavy face. "They were just chatchkes," he said, the Yiddish word for knick-knack. "But he could have been seriously hurt by that bookcase." Yes, but instead he got away with a scrape on his right cheek that faded by the time he returned to school on Monday.
Alex hasn't climbed a bookcase in months. Alex knows he isn't supposed to climb bookcases. I suspect he even knows he could get seriously hurt: and boy, of all the people I know, Alex should understand best what it's like on the business end of a medical procedure. But he climbed a bookcase, and I think reminded us all that even in places where there's nothing he can break that people care about, he could still do a number on himself.
Kids do stupid things. What bothered Jill was not that Alex climbed a bookcase - she claims that at her seventh birthday party some boy climbed a bookcase, and brought it down with a crash that's probably still echoing somewhere. What bothered Jill, and me, was that afterward Alex voiced and showed no shame. That would have required, we were reminded again on a day when we didn't expect it, more connection to people around him. In some ways he was absent, and in some ways he was there.
"Alex, you do not do that!"
He tried to head to the basement playroom.
"You could be hurt. No!" A stiff finger near the nose. He moves away, and spends dinner in the playroom, watching Elmo. He isn't sulking - I expected he'd spend dinner in the playroom watching Elmo - but I choose to believe he realizes he's done something wrong.
A few days later, I explain to Aunt Julie that we had a stern talk with Alex and that I'm betting he won't climb the bookcase again. She doesn't believe this is necessarily true -- neither do I -- but what's our choice? Leave him out of family events? That would be a sad path. Bring a babysitter specifically to watch him? Perhaps, but we tried that in years previous, and Alex spent most of the time trying to elude the babysitter and get back to us.
So Thanksgiving 2006 joins our working vacations of earlier this fall as contributors to our strategy list for 2007. Points on this list include "Rent a Car on Vacation" and "Listen to Jill More." They also now include buttonholing the college guys next November, unbeknownst to each other preferably, and saying, "Look, can you do me a favor? I've got to fry Alex's hot dogs and Jill's got to help wrangle the turkey out of the oven. Could you keep an extra set of eyes on Alex, for just the next half-hour?" I intend to repeat this tactic several times during the afternoon.
Will it work? Kids do stupid things. But I still bet Alex won't climb a bookcase again. "Of course not," says our neighbor Anna, who's a mother of two. "He'll do something different, and worse." (December 2006)
I think Alex knows what he wants to wear. This is a good sign, Alex's sudden preference for only black T-shirts. This is something typically developing kids do, settling on one type of clothing. I never expected Alex would come around to doing this, or at least wouldn't come around to it for many more years.
"Black T-shirt! Black T-shirt!" he says, as almost by reflex he squirms out of the red thing I'm trying to get on him. "Nooo! Nooo!" He slips the sleeves off his arms with dexterity that would be lovely if it weren't such a pain in the ass. "Alex, you love this T-shirt!" I say. "Look: It's an Old Navy. You've worn this dozens of times."
"Noooo. Black T-shirt!"
Alex has worn long-sleeve shirts, both button-down and sweats, so I'm not inclined to think is a tactile thing regarding on his arms. This latest wall of preference started with Alex declining to wear T-shirts with designs or logos on the front. It was a special dad/son moment when I taught him the trick of turning a T-shirt around by just slipping his arms out and spinning the shirt around on his torso. He giggled and giggled. That was about two months ago. Though he still accepts logos down the back for sleeping and occasionally weekend wear, he soon accepted only black for school.
Jill and I have wondered why. "Maybe somebody made fun of him?" I suggest, but Jill thinks this is unlikely. We believe it'd be hard to make fun of Alex so he would take it as an insult. At least, we like to think it would be hard.
"Black T-shirt!"
Subtle variations are allowed. Bath time T-shirts, for instance, like the baggy red number with "My Brother Did It" on the front/Alex back, or the baggy brown with "Future Lawyer."
On the Internet, Jill finds a story of 17-year-old autistic boy who wanted to go to Fargo, North Dakota. Everyone wanted to know why. He'd never been there, his mom explained, and he just wanted to go. A similar, unspoken, and vaguely sensible logic powers many of Alex's fixations.
Alex, you want the dark blue Old Navy with the American flag, the kind of shirt you've worn since you celebrated your first birthday in the hospital, when you still got your meals through a nasal tube? No. Then do you want your green Saturday recreation program shirt with the yellow lettering, your game jersey? No. Is it just time, he's decided, to make a fashion choice, the same way he just decided the other night it's time to spell "daddy" and "dog" on his own?
On a cold day Alex sometimes submits to a long-sleeved jersey of some other color, but mostly not. He has four black T-shirts, I think. Jill got them almost in afterthought at, of all places, Old Navy. When the supply is gone from his dresser drawer, we know it's time to do laundry. They're good shirts, unstained, unripped, no stains to speak of. Sturdy. Good thing, though they won't keep him warm in Fargo. (January 2007)
Alex usually spends his dinnertime at the TV, in front of "Elmo," "Mother Goose," or the Christian kids' music video. As I eat my dinner, I look at Alex over there, and wish he were at the table with us.
We've asked him many times to bring his hot dogs or chicken nuggets, followed usually by chocolate or vanilla ice cream or a mound of oyster crackers, and pull up a chair. He eats out of a dark blue plastic bowl, except for the crackers, which must be in a yellow bowl. He has a yellow plastic bowl at school. Sometimes even to hot dogs or chicken nuggets, Alex proclaims "No! No!" in which case he gets just the crackers, followed by a second glass of V8 juice. Thank God for V8. But the point here is that we want him to pull up a chair.
"Alex," we all call, even Ned, "come over! Pull up a chair." He doesn't. Not completely, anyway.
We've tried to get both boys more involved in dinner prep. Ned typically helps take in the dishes and plates, and hauls out the "tonsils" (knives, forks, et al to the rest of us). We're trying to get both boys to help load the dishwasher, a puzzle-like task I thought would be perfect for Alex. And he wants to help, I think, an intention I somehow divined after he started repeatedly pouring half-gallon cartons of milk down the sink. Over the holidays, Jill asked Alex to help set the table, hoping that such a task might be one way to get him to the table to eat. Alex set out the coffee cups, and pointed all the handles going the same way.
If he sets the table and clears the dishes, we think, maybe he'll make the connection between food and sitting at the table. As it is, we have one son (Ned) usually asking "Do I like this?" over some food he's eaten as often as twice, gobbling something like the roasted Brussels sprouts and ignoring the rest of his meal. I look past him to Alex over by the big bean bag, watching TV or sometimes staring into space. I wish that more often I had the energy to ignore my own dinner and rescue him.
"Yes, you like this. Eat your dinner, Ned," we say. "Alex, come eat with us." We tempt him with crisp chicken skin, crisp vegetables, fried tortilla strips. "Alex, try it. Crispy!" Nothing.
Alex does come to the table now and then. One Passover he hovered around the candles and kept saying, "Birthday! Birthday!" At Hanukkah he will of course loiter around the dinner table until presents time. We kind of wish he wouldn't play the Christian kids' video on Hanukkah.
Sometimes even on non-holidays he comes to me, puts his face in mine, and tells me about something on "Mother Goose" ("Too high for Jack...") or "Elmo." He will play with food. With bread he pretends to make toast, then doesn't eat it. He often asks for milk, because they drink it on "Elmo's Cooking!" I don't believe Alex has ever downed a glass of white milk, although he has had chocolate milk.
He was hovering the night we had spaghetti. Alex had been hanging around the table when he finally did slip into a seat (mine) and took my fork, and put spaghetti in his mouth, and chewed it and swallowed it. He just kept shoving it in, carefully wiping off the sauce first.
"Jill! Look at this! Just sit here with him for a one moment." She gets up to do something, and I say, "Jill, you have nothing more important to do in your life at this moment!"
Spaghetti is huge. At the table! He's been eating the cheese off slices of pizza when I'm out with him, but that's in the pizzeria, and like all good New Yorkers Alex eats better in restaurants than at home. Spaghetti is huge. Ned claps him on the back and hugs him. We all go "Yaaa!" and Alex grins and laughs. I try not to give in to joy. Alex did this with a strawberry once, and once with a blueberry, and once with a shrimp. But never did he stay over that line of being with us at dinner.
The night after the spaghetti he's back at the TV. He asks for chicken, eats two of the four nuggets, then asks for crackers as the Christian kids finish off with "There's a Hole in the Bucket." (January 2007)
I walk by playgrounds as if they swarm with ghosts, and feel I won't be on one again until I'm a grandfather. The bookstore has supplanted the playground as Alex's destination of choice.
"Bookstore! Bookstore!" He says it on buses. He says it outside chicken eateries and in booths of coffee shops, saying it over and over while declining even Saltines. He says it most often anywhere within three blocks of a bookstore he's been to even just once. (Alex's memory doesn't surprise me: He used to pull the same stuff with playgrounds, and the other day he darted to the display of toy cars in a new drugstore in our neighborhood. So how come he can't remember to stay asleep at 3 a.m.?)
Ned likes bookstores, too, and when he gets to one he finds titles of interest and plants himself. I'd like to say that Alex plants himself with a pile of books and goes through them one by one for hours on end while sipping espresso just like everyone else in New York City now that public libraries have once again had their funding slashed. But Alex darts about as if hunting for toy cars in a new drugstore, a low-flying dragonfly going aisle to aisle and drawing out books of Elmo, Eric Carle, and Dr. Seuss, among others, finally sitting down and fanning them out before him across the carpet. If only he would open one of the books.
And he does, sometimes, but mostly it seems to be an exercise in covering as much retail carpet as possible with books he knows.
"Alex, Brown Bear, Brown Bear?"
"Bookstore!"
"Alex, you're in the bookstore."
The boys are ready to buy books, having received over the holidays practically a Bicycle deck of gift cards to bookseller chains. Alex has been in bookstores all over New York City, and in three states, including Barnes & Noble, Borders, Booksamillion, and independent stores on Cape Cod. Locally, he knows the 86th Street B&N, as well as the one on 83rd Street. I like the Park Avenue Borders; the big rectangle of its children's area is sunken and fenced in. I can blockade Alex and sit on my fanny at the same time, usually reading scale-modeling magazines or military history. Look in any children's section and you'll see, scattered amid the stories of lost pets and sleepy teddy bears and Cats in Hats many a copy of Castles of Steel or Band of Brothers, proving that the American dad is alive and caring for the kids.
"Bookstore!"
"Daddy, can I have this?" Ned asks, holding up some piece of children's literature wherein Spiderman practically gets an arm ripped off by Dr. Octopus.
"Yeah we'll see, Ned- Alex come back here! Watch out for the baby!" Pity any new walker who gets between Alex and Go Dog Go!. Shoppers sometimes look at Alex, a boy plucking titles conspicuously too young for him, and seem to sort of wonder how close he's going to get to their own children.
Bookstores are yet another place, like the world, Alex has learned about and wants to be in. Also, we think he can read. We read to him every night. Over the homework where he must circle the word that matches the little picture, he's circling slick as can be by the end of the assignment. If Ned gloms the TV, Alex will pitch a brief, required fit, then settle down to silently flip the pages of Elmo or Richard Scarry. Why would Alex do that if he couldn't read? But if that skill exists inside him and if he's learned the value of reading, he hasn't yet learned the value of mentioning it. At least with more than two syllables. (March 2007)
I had just settled down on the couch to sip a glass of red and zone out for an hour before bed when Alex rounded the corner. He was coming out of his bedroom, on the run, his hair all funny and his eyes squinted against the light.
How long does it take the words "he just woke up" to cross your mind? I got to maybe "he just" when Alex tried to cut sharp right toward the couch, slipped on a piece of paper, and hit the floor with a thud that I will hear the rest of my life.
"Alex! Jesus!"
That became my favorite phrase of the next 10 minutes. I picked him up and brought him to the couch. He lay limp, no arm or leg even twitching, his mouth a twisted rectangle of misery and his voice making a quiet hum of pain: a huh, a huh a huh. His legs hung off the cushions. "Alex? Alex!?" Was he:
1. Paralyzed by a broken neck?
2. Having another seizure?
3. Paralyzed by a broken neck while having another seizure?
"Alex, Jesus! Jill-" I turned to her. What did I expect she'd do? Again she and I were rowing furiously and nowhere in the same boat. Alex can't tell us what he's feeling, not in clear words (a huh a huh a huh), but only whine his question of why such pain has to follow sweet sleep and an impulse to enjoy life with your mom and dad while they watch TV. I kept picking him up and putting him down until Jill told me to stop. His arms and legs still didn't move. The bad moments continue to bushwhack us.
"Jeff, put him down," Jill said.
We did the ER thing after his seizure on this very couch two years ago. He couldn't tell us where it hurt that time, either. He hasn't really ever been able to tell us where it hurts. "Neonatology," I tell audiences, "has got to be the only branch of medicine where you can't ask a conscious patient, 'How do you feel?'" He's never been able to tell us if he can feel his fingers or toes, or if a given spill landed him on the neck. Notes will come from school remarking on scratches, dings and dents, bruises and limps. None of these, the notes usually add, slows Alex down in class. Often the only indication he'll give us of an injury is when he runs over holding his foot and saying something like "Bump your head!"
"No, Alex. You bumped your foot."
"Bump your foot! Bump your foot! Oh Alex! Oh no! Jesus!"
I ran my fingers between his head, down his spine, along his bony back. He is poster-child thin; every bump felt like a broken bone.
He came back inch by inch. He moaned; I gave him a shot of Tylenol and took him back to bed, where he coughed and rolled over. Not paralyzed: Very good. I checked him, and saw that the upper part of his right ear was already deep purple with a bruise. He turned away when I try to kiss it. And of course he can't tell anyone we didn't hit him; school is probably not going to like that he has started saying "Jesus" either.
"My ear hurts," Ned said one night, crawling into our bed around 2. "I had a bad dream," he said in the middle of another night. On the nights Alex crawls in, Jill still must ask, "Did you have a bad dream, Alex? A bad dream?"
"Bad dream," he replies. "Bad dream."
Tell me about it. You're sitting there about to enjoy a movie and even if Alex had made it out, he'd have just snuggled into the cushions and dropped off to sleep again, and wham! Suddenly the only show I was interested in watching was "ER." Jesus, Alex. It makes me wonder if he and we will ever be out of the woods. I drink the red in one long swallow, just to get rid of it. (April 2007)
My boss Howard suggested that at dinnertime Alex have four nuggets to take with him to the TV set - I know, I know: We're trying to make improvements there, too - and that Alex to return to the table for one more nugget, then he must sit at the table for the last nugget. Eventually, we're to fiddle with the numbers to get him to sit at the table, where he will eat dinner with us until he's another surly teenager and we demand that he leave the table.
That was too much work. So we went with eating something good.
"Alex ate half my banana today!" his teacher Jane exclaimed the other day. "It was a total surprise! I was eating it at my desk, and he just walked over and asked for half. And he ate it!" Jane reports that Alex is also shadowing peanut butter, and with us in the supermarket he always zeroes in on the small jars of Skippy creamy.
For dinners, Alex has been eating a steady diet of chicken nuggets and hot dogs, alternately. One rather non-shy reader was aghast that we feed him such things. I invite this non-shy reader to take over feeding Alex (Jill and I will go out for a drink), and listen to the barrage of "Nooooo!"s and watch him twitching away. Not to get defensive here, but Alex got toilet trained faster than I did, gives himself a bath each evening, can read we're pretty sure, and downs his share of vitamins and nutritional supplements every day. I refuse to think Jill and I are doing a crappy job. It's just that when you're the parent of a special-needs kid, 4-1 is an excellent record for a given year.
I also must add that Alex seems back on bacon, an old favorite that made his eyes pop years ago in a coffee shop in Queens. We used to even feed it to him when he was a baby, because 1) it fattened a boy who dearly needed to be fattened, and 2) we got to eat what he threw out of the highchair. Nowadays, Alex and Ned split a couple of side orders in coffee shops, meaning that we, a family living with autism, actually get to eat out together. So make that 5-1.
In an effort to notch another W, I buy a banana off a sidewalk cart on the way home. A banana's a quarter. I lose way more than a quarter on most trips to Vegas. One dinnertime when we're especially well-stocked with pretzels (Utz Dark only, please), I marry the idea of Jane and Howard, making sure to partly peel the idea first. "Alex, pretzels?"
"Pret-ZULS!"
"Have some banana first."
I hold it out, careful to let him take it - I don't like people ramming food toward my mouth, either. He looks at me and giggles; there may be little language there, but there is understanding. He giggles and giggles. "Have some banana first, Alex."
He stops laughing, gets all set in the face, and bites. A real bite, too. He chews and chews. "Water?" he mumbles at last. I give him some in a favorite plastic cup. He drinks. Trying not to feel like some sort of trainer, I quickly hand him the bowl of pretzels. Off he goes.
Back he comes. "Pret-ZULS!" (I know, I know: We're working on remembering to get him to say, "May I have some pretzels please, daddy?" but sometimes we forget.) "Have a little more banana..."
He does - sometimes more real bites, sometimes just a shave with the front teeth - until after several trips and giggles and bowlfuls of diminishing numbers of pretzels, he has eaten banana. On the first night, he eats about an inch of banana. On the next night, two inches. The next night, two-thirds. Our immediate goal is half a banana every day or so, or, of course, as much as he'll eat. Don't boxers eat bananas? It would be so nice if Alex could look more like a little boxer and less like a "Save the Children" poster.
With my fingernail, I make a notch a few inches down the banana, and hope he gets there. He doesn't, not quite. "Quit while we're ahead," Jill advises.
Readers shy and un- have commented that my writing style doesn't appear to permit rejoicing at Alex's achievements. Some readers even believe I don't acknowledge them. Believe me, I do. If I had a bell in a village square, I'd ring the hell out of it. Jill and I have been dreaming bananas for years. 6-1. Next we'll dream of peanut butter. (May 2007)
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