Alex's previous dental appointments included the doctor wrapping him in a papoose (a kind of zipped-up sleeping bag for autistic kids who really can't take the exam), and, needless to say, screaming. "Well," said that dentist, a sweet guy named Lee, "at least when he screams it's easy to look in his mouth." I liked Dr. Lee. He was the one who pointed out that we need to switch toothpastes often because bacteria builds up immunity to one brand. I did not know that.
There's a hitch at the door for this day's appointment, which is with Dr. Lee's replacement who is also named Dr. Lee. "Everyone's gone. She's not there anymore," the receptionist tells Jill at 10 to five. Our appointment was for 4:30. Would the new Dr. Lee like to know how many doctors have keep me waiting a whole lot more than 20 minutes throughout Alex's lifetime?
"She said she called you," the receptionist insists.
"She never did!" Jill replies.
We've brought Alex here today, Ned in tow, because he's overdue for a checkup, and because he's been grinding his teeth. Jill thinks Alex may be grinding his permanent molars down to the gums. Jill thinks Alex may need caps. In those earlier appointments of the papoose and the screaming, Alex was just getting his teeth looked at. What's he going to do when they try to wriggle caps onto his pulverized back molors? I should say here that Alex has been a pretty cooperative tooth brusher since he saw that dental segment of Elmo's; Elmo is the only person Alex really listens to.
Jill, undaunted, vanishes through the door that leads to the dental clinic. I read to Ned, then Alex and I go to the bathroom, leaving Ned to watch mom's bag and also watch the big autistic teenager who's flapping his hands a lot, waiting for his own clinic appointment, and whom Ned will later confirm is "sensitive like Alex." I have no doubt Jill will come back out with at least an appointment, and sure enough it's only a minute or two after Alex has flung open the bathroom door before I was finished peeing that Jill appears at the inner-sanctum door and waves us all in.
The new Dr. Lee is a sweet and small woman who calls what happened at the front desk a "miscommunication" as she guides us all into one of the exam rooms. Alex flies right into the chair like, well, Ned, who loves coming to all types of doctors because Ned believes that then people will think he's sick and he can watch The Cartoon Network.
"Good job!" the new Dr. Lee tells Alex in the chair. I prefer "nicely done" over "good job," but otherwise this dentist does a heck of a good job herself. She calms Alex, and even gets him to open his mouth, showing first his bottom teeth and then his tops, with only minor shows of anxious curiosity over the little round mirror thing. "Can I see the upper teeth? Alex, can you go like this?"
Ned is behind Alex; I'm standing by Alex's feet. "Ned," I say, content with myself as a father when I can call Ned's name not for a scolding, but to help him learn something cool. "Come over here and you'll get a better look ..."
Alex's patience with the new Dr. Lee and with the round mirror thing seems to dry up then, and he clamps his jaws shut. Then he starts to giggle and look around. Dr. Lee seems charmed, and says Alex might benefit from "behavior management," whereby he'd come to this office a few times a month, sit in the chair, play with a toothbrush, giggle with the doctor, and learn that the dentist isn't always the star of a papoosed nightmare.
The doctor says Alex hasn't ground his teeth dangerously low. "All kids grind their teeth. He grinds his teeth!" she says, pointing to Ned.
Ned smiles. "Ned," I ask, "how often does Alex grind his teeth?"
"Sometimes when he's watching TV," Ned says. "When can I go to the dentist?"
Dr. Lee gives Alex a toothbrush. We say goodbye, and Jill is happy. Later, when I have a chance to think about it, so am I. Finding a way through dental appointments is more than life skill - it's a survival skill right up there with toilet-training. The behavior management apparently starts soon after Alex gets home: He goes to the bathroom and brings the toothpaste into the living room, and shows his new toothbrush to Elmo. (June 2007)
"Sleepy's: For the rest of your life!" -- slogan of a New York-area bedding store
Alex's sleep issues refuse to quit. At bedtime we still pour into him melatonin, along with his Topamax. A few hours before that, he gets his daily dose of calcium. Jill says he drinks milk when he first gets home from school, and he often has a banana now for dessert at dinner, so the real food's there. So why does he bounce up most nights?
For about a year, there's been an undertow of tired in me. At any moment I may have to shake my head. If I start to stretch at my desk, I cannot stop yawning. The undertow has been building for a long time. "Alex bustles lately between 3 and 5 a.m. Jill and I have worked out a strategy for overnight, in which one of us handles the kids if they get up, the other gets up at 6:30 to wake Alex for the school bus. On weekends, we split Night Duty at 4 o'clock." I wrote that three years ago.
"He bounces up anywhere from 1:30 to 4, and is sometimes up chirping for one to two hours." That was a year ago.
The neurologist overseeing Alex's Topamax wrote us a prescription for a sleeping pill. For Alex. We can give him two, max. One bounces off him like bullets off Superman. The last time we gave Alex two pills, he was so dead to the world that he didn't wake up until he'd accidentally wet the bed, which Alex never does.
Jill and I also continue Night Duty. "I had it last night!" "But he didn't get up!" "But I still had it!" "Oh all right!" It doesn't matter which of us says which lines.
Ned rarely wakes up, bad dreams aside. Alex we find morning after morning in rumpled sheets. I thought this would be behind us now, or at least would have developed to the point where I'd be talking about it in a different way.
We have few overnight breaks from Alex. Autism prevents him, even at age 9, from staying overnight at a friend's house. He will go away to camp for one week in late August, and we're hoping that goes better than his previous overnight camp experience. We've worked all winter to get one or two of his classmates to go the camp at the same time, and to see if counselors from his after-school and Saturday programs will work at the camp at the same time. Even with all that, I think it's unlikely he'll stay the whole week.
Sometimes, though, Alex will go as much as almost a week "sleeping through." "Did Alex get up last night?" "No, thank God." Again, doesn't matter who's saying which. He also stays asleep better, though after those sleep-through nights he tends to pop up at some USMC hour like 5:15 a.m.
At those hours he's actually self-reliant, closing out bedroom door, turning Elmo on low, and getting himself an overflowing plastic bowl of crackers or Goldfish. Jill says she "forces" herself back to sleep that early in the morning, but that bar of living room light under our bedroom door often keeps calling me. Often I just get up, telling myself I'll have two cups of coffee this morning only and that while everyone except Alex and me is still asleep I'll get a jump on the day's e-mail and Internet pornography.
That naturally calls for a nap in the afternoon, but I often skip it and soldier through until my eye rims are aflame by 9 p.m. Then with putting up the dishes and straightening the house and checking the boys and preparing Alex's metal cup for middle-of-the-night Benedryl and using the Waterpik and getting tennis balls ready for the legs of my walker and talking to Jill and other chores, 9 slips to 10 and often to 11. So I guess I can't be that tired. (June 2007)
On Sunday I saw Shrek the Third. I won't remember it for its plot, but it was the first movie in a theater I ever sat through with Alex.
He giggled when Jill brought him the booster seat. Then he asked for popcorn. "They buy it for him in school," says Jill. Alex's teacher takes her class to movies, including this one. We figure it might help that Alex has seen it.
I'm not a big moviegoer; my enthusiasm has shriveled like burning celluloid as tickets have topped $10 and commercials fill more and more pre-feature time. Jill, however, grew up on movies - she feels about them the way I feel about pinball arcades. She has made great progress with Ned, who, rather than a religious education I guess, is getting indoctrinated to movies. Jill even has rules: 1. Go to the bathroom before the movie; 2. No talking during the movie; 3. Leave when the movie's over, not before; 4. No walking around during the movie. Ned follows them all. Jill says we've been spoiled by Ned in the movies.
Though Alex has gone to maybe four movies with his class, we've never taken him, and we've been a little afraid to. We're not alone. Last year, an autistic 10-year-old boy was kicked out of a Long Island theater because he laughed too loud and too long at March of the Penguins. I was pretty sure Alex would break all four of Jill's rules. As the lights dim, I figure I'll have to take him out about 30 minutes into the movie, and probably again mid-way, at which time we'll go across the street and kill time at Barnes and Noble until Jill and Ned re-emerge back into the sunlight.
As we near the theater, Alex seems to get the picture. He opens the door to the theater and runs up the stairs and flings open the door to Pirates of the Caribbean. It is a dark, snowy scene in the middle of Pirates.
"Over here, Alex. Bathroom." We all go -- Rule Number 1 -- and then we enter Shrek and find four seats on the side. Jill sits between Alex and Ned. I take the aisle.
I've bought Alex chocolate, a thick bar. "Chocolate?" he says. He munches square after square through The Simpsons trailer. We're trying to get him more involved in "The Simpsons." "Chocolate?" he says. Square after square. He chews quietly, but the chocolate is gone by the third scene of Shrek.
"Water," he says, at the top of his voice, reminding me of when I was six and, responding to something Dean Jones did in Monkeys Go Home, said, "Gonna stay!" loud enough to cause echoes in the theater.
"Water!" We give him some.
My dreaded first half-hour evaporates, and Alex seems content to sit through this movie again. He applauds when the characters on screen applaud. He cheers and laughs when they cheer. Then he sings "The ABC Song" when they don't. He arches his back a little and chatters, and draws little designs with his fingers against the dim ceiling lights. He starts to get up. I block him. Imagine hunting for Alex in a dark theater without disturbing anyone?
I whisper to Jill that I might have to take him out.
"We're in a near-empty theater," she says. "Just let me handle this." She takes Alex's head on her lap for a moment and runs her hand on his hair. He goes quiet.
"If anyone had been bothered, I would've taken him out," she says later. "But if he's just chattering a little, then fuck it. Honestly, if the worst thing that ever happens to someone in their life is that a little boy who obviously has issues makes a little noise in a movie, then they're lucky."
I block him again. I sit him down as Shrek and the donkey go through the first part of what they have to go through, then the second part, then the third, and it begins to settle on me that maybe Alex will make it all the way through this movie.
Then suddenly it's the happily ever after, and by the fadeout Alex rests his head and back on my chest, just like Ned did through Nemo, and with stunning suddenness Rule Number 3 becomes history. (June 2007)
Readers continue to remind me to note Alex's progress. Dear Reader C. remarks how I'm no longer talking about oxygen tanks and feeding tubes. Dear Reader K. hopes I "realize that the Alex of late is so much more than the Alex of a few years back." Jill and I, fiery-eyed after another night of broken sleep, were just discussing that the other day, how the steps ahead take place over so many months that it becomes tough to notice progress. A recent dinner and a recent lunch, however, gave us a clearer look.
We had dinner in a sit-down pizza place, and lunch the next day in a Vietnamese restaurant. Chicken Nuggets and Hebrew Nationals were on neither menu; Alex sat through both meals.
As for an endless while chicken nuggets constituted Alex's chief source of nourishment, for years I've taken Alex to countless Popeyes, McDs and Burger Kings -- in the latter, Ned likes the movie tie-in toys, which constitute his chief source of nourishment -- but a real sit-down place where you have to leave a tip needed to be done.
"Going to a coffee shop is just something we should be able to do as a family," Jill has said, and that was impossible when Alex would bolt and squirm and otherwise ignore the food. So Jill showed the same determination she used to get Alex toilet-trained, determination that he would simply fulfill that essential part of being a New Yorker, along with spelling "Liquors" and hailing cabs. She got Alex started in restaurants years ago by giving him bacon in a Queens coffeeshop while he was still in the stroller and on oxygen. His eyes popped at bacon, as mine still do.
He was off bacon for a while, but has returned to it to the point where we have probably unequalled knowledge of the prices of side orders of the Big B in coffee shops throughout Manhattan. (Ned likes it too, along with coffee.) Before bacon in coffee shops Alex was most recently on Saltines; we could tell how which waiter in which coffee shop might react to a special-needs kid in his family by how he reacted to being asked to bring crackers but no soup.
I broke Alex in on pizza, way back in the wrestle-the-double-stroller-all-over-upper Central Park days. "How'ya doin', buddy!" they always say to us in the pizzeria on Madison and 96th. Unlike some owners of eateries, they realize that even families with autistic kids have a choice of where they eat. We started by asking the counter guys to criss-cross a slice into smaller pieces, from which Alex would pick the cheese. Later, I just scraped the cheese off with a fork, cut it up with a plastic knife, and speared it for him mouthful by mouthful. He still eats just the cheese, using a fork
I was doubtful about the recent pizza joint, a small and unintentionally authentic Sopranos-style place in old Italian Harlem. It wasn't that I thought the staff would object to Alex, just that he hadn't been there before (Eating With an Autistic Kid Tip One: Go somewhere familiar!). Aided by a crayon and paper tablecloth, though, he sat through the salad and our mussels and waited patiently for his share of the scraped-off gummy cheese. He got it and he ate it, three slices' worth. Eating With an Autistic Kid Tip Two: Take him after a full day of summer camp where he still refuses to eat anything for lunch.
Next day brought Vietnamese. We were heartened by recent experience in a Korean restaurant where Alex had turned down everything except what Jill termed "the weird" bean sprouts, and made do with a tube of Saltines. "Kind of an open space," Jill muttered to me in the Vietnamese place as we entered past tables, eying the seating layout. Rule Three: Aim for a booth or a table against the wall, and containment. As for the food, a year or two ago Alex did eat dumplings in Chinese restaurants - Vietnamese cuisine is much like Chinese, minus the sauces - after we'd peeled away the noodle outside and left him the vague meat inside, which for a while we convinced him were a kind of hot dog. Last winter, Alex tried to eat white rice but gagged, so Jill ordered the grilled chicken, which after all looks somewhat like nuggets. Sometimes he also likes to play with chopsticks.
Alex turned the chicken down, and I was about ready for him to bolt for the kitchen - that's happened before - when he pulled over the white rice and began spearing it with the chopsticks. That's pretty hard; I've seen even experienced users of chopsticks hold the bowl close to their lips, as if to sip the rice. I handed Alex a spoon. Between that and his fingers, he got lump after lump of rice to his lips and to the front of his T shirt. He didn't choke or bolt. He sat with his family. It gives me hope that someday he'll pay the check. (July 2007)
(Jill and I have a podcast about eating with Alex in restaurants, along with some tips and sources. To hear it on your PC, click here .)
Alex conducts himself with subdued dignity as we stand in the mob of parents and kids. He knows something big is up. The doorway is narrow. The lucky ones huddle from the rain late on this August Tuesday morning. The others huddle outside the doorway, under umbrellas.
We're here to send Alex away for a week, to camp. If this works, it'll be the longest time he's ever been away from us. I look for him back about Friday morning.
The male nurse behind the table is the only guy answering questions and the only guy wearing a tie. The camp counselors all have on T shirts, and all look about 16. In front of them on the table sit piles of filled-out forms, and at one end is a milk crate into which the youngest-looking counselor, a pudgy girl, drops Zip-Locs containing bottles and tubes of medication collected from parents once the nurse matches campers with their forms. I pass Alex's Baggie of medicines to the nurse, who checks the name and hands the bag to the pudgy girl. "This one's ready to rock and roll!" the nurse says.
Some parents hit paperwork snags ("Are you the doctor?" one parent demands. "I'm the nurse," the man in the tie replies.). We dodged a snag: Somebody sat on the forms for two weeks at our pediatrician's office. When I finally did get them in with a week to go before camp, the nurse (a different one) came on the phone and said we were missing the prescriptions. So I also had to shake those loose, which I tried to do by charming the receptionists by calling it "that stupid camp we're sending our kid to."
Which it isn't, of course. Stupid. Aside from representing a week of unbroken sleep, it's a nice camp. We went there for a rainy weekend in May. There was a campfire with pretty young Russian counselors. There was a pool (closed then), a rec hall (closed then), many lodges (closed then), and horses (not around then). Tons of room to run, and Alex can run. We stayed in a trailer that was maybe 500 times the size of my first apartment in New York.
Jill likes to say that whether he knows it or not, Alex has had a good summer. Every morning for the past seven weeks, he has entered the front doors of our local Y to wait for the bus for day camp. He seemed to think of it as a kind of job, so I'm wondering - as I try to hold Alex, the umbrella, Ned, and the brown suitcase Ned carted to with me to Maine and which was barely returned in time by US Airways - if Alex thinks he's coming back home tonight.
In the brown suitcase we have 10 pair of underwear, four pairs of shorts, his red hoody, his denim jacket, two Seuss books, his tiniest Elmo, his sandals, and his sneakers. Before they went in, I asked Jill where she thought she was going to iron a name label on the leather sandals? "I thought you were going to label them on the bottom?" she says. Helpful. It always comes down to this two-minute drill when we're packing anybody for anything. I spent the night before the bus writing "Stimpson" in fat green permanent ink across the heels of 20 white socks we'd bought for him the day before at K mart. Everything he takes has to be labeled. Ned lost a lot of stuff at camp. Alex not so much, because being autistic he has someone constantly looking after him, and his stuff.
Jill and I crammed that suitcase, but on the subway this morning I'd turned to her and asked, "Did you pack his medicine?"
"Didn't you?!"
"I don't know," I say with a flimsy sense of righteousness.
"I hate packing with you!" Jill says. Helpful.
On the walk to the bus, I meet the camp director. "Here's the camp number," she says, wiping a string of wet hair from her eyes. "You can ask to speak to his cabin. Here's my cell number. He'll have fun. If he doesn't, we'll run him home."
It'd swell me to believe that this week - he'll be back on Friday, about 11ish - will be about Alex getting off on his own and growing independent and stuff like that. But I'm already thinking of a few nights (could he make it past Friday?) rich with their unbroken seven hours, of a living room floor free of saltine crumbs and sharp plastic toys, of a house where Elmo is hibernating.
I sling the brown suitcase into the belly of the beast, and in front of our faces, the bus gets big.
Later, when Alex has been gone for five hours, I wonder, So when should we call?
It's Tuesday. He's off for a week. The hours, with any luck the days, will tell how long he'll give it. I mean camp is fun, but six days without "Elmo?" I'm not sure even I could do that. Ned also informs us in the wee hours of the first overnight that he can't sleep unless Alex is in the house. Wonderful.
Says Jill, midday Wednesday, "No news is good news." I call anyway. "Call me tonight between 8:30 and 8:45," says the operator at the camp switchboard, "and ask to be connected to his cabin and speak to his counselor." As I walk around at lunch, I think about Alex being up there, worried whether he's having a good time -- at least fun days that exhaust him so he doesn't cry at night -- and trying to remember that he's not at home now and he won't be in his bed tonight.
I do call. "He had a big cry last night," says the lady who's been detailed to shadow him. "He's not eating much. I made him chicken nuggets but he refused them. But today he went on a boat, and I took him down to see the horses."
"He eats bananas now," I say.
"Oh yes," she replies, "he did have two bananas today."
On Thursday night, I ask Jill, should we call? I mean, he's eaten two bananas that we know of in the past 72 hours. Says Jill, "It's not in their interests to have a starving little boy on their hands. They'll call if he has to come home." I depend on her to see the sense in many situations like this.
Now it's Friday, and it begins to dawn on me that they probably won't send him home over the weekend, figuring he can hold out for just another two days. Friday is our first hot day of the week. Is he splashing in the pool? Riding a horse and giggling with delight when he dismounts? Or is he too wracked by grief and tears to get out of his bunk? I consider calling the camp leader, but I realize that she gave me her number for truly urgent stuff ("Thanks so much for sending him home! I'm terribly sorry! Where should we meet you?"), and not for a dad without enough to worry about on his lunchtime stroll.
Friday passes with no call from camp. Ned begins to sleep through the night. The living room remains free of crumbs and the scream of Elmo. I miss him,, I think, but this is what life could be like if he didn't have autism.
"This is the longest time he's ever been away from us," Jill says again. It's starting to get to her, too, though she claims it isn't. I can tell. The weekend melts away. Alex's bed actually begins to look dusty. Sometime late Saturday afternoon I make up a reason to phone, claiming that I'd forgotten where and when his bus is due to return home Monday.
"Oh he's having a good time!" says the camp director. This camp is run by the same terrific agency that runs Alex's after-school and school-vacation day programs, and one of his long-time counselors from those dropped by the camp on Thursday. "Alex is loving it!" the camp director says. "He's been on a horse!"
"So I guess we'll see you Monday then," I say. Jill's face goes bright.
"Should I come with you to pick him up tomorrow?" I ask.
"I don't think he'll be happy when you have to go back to work," Jill points out.
Then it is Monday. "We have two little boys again!" Jill exclaims on the phone after bringing him home, and setting in for her long, long week with them before school commenced. "He came off the bus smiling, not crying, like some kids. He's happy to be home. The living room looks like a bomb hit it."
On my own way home later that day, I think how I'm excited to see him again, excited in a way I haven't been since he was living in a hospital and I hadn't been to visit him for a couple of days. It has been a long time, perhaps so long that I'm even looking forward to being awakened in the middle of the night. I'll let you know. Right now, I'm just proud. (September 2007)
(Jill again contributes this week's essay.)
It's the last day of summer at the end of a long school break. It's also the end of a week that felt a month long.
Lost: two pairs of sunglasses, one I bought at a church sale for 50 cents and LOVED. Vintage 50s and perfect in absolutely every single way. Not too big, not too small. Had a nice heft to them. The frames were beautifully shaped. Mildly but not ostentatiously retro. Left on the bus as Jeff barked, "Hurry up! Let's go!" At which barked command, I rose like an obedient dog and did not look behind me. Gone, baby, gone. The other pair is MIA, so I'm back to using a crappy pair from some faceless street fair, the pair that always manages to catch a few strands of my hair in the hinge.
Also lost: my boundless delight in what I imagined would be the ultimate picnic basket. I would never again have to even look at picnic baskets or think about them. This basket is sold by Crate and Barrel in the early weeks of summer, and I liked it last year but hesitated and it was gone. This year I bought it the minute it appeared in the spring and presented it to Jeff as a Father's Day present. Kind of a rip-off, I know, but I asked him if Father's Day had to be presents the father would like, or if it could be equipment the father would use. "A little of both, I guess," he said. So I bought the basket since we do go on picnics with the boys, and he seemed relatively happy. Certainly happier than I would have been if he'd gotten me a subscription to Scale Modeler.
Then I packed this beautiful willow basket with sandwiches, fruit, hard-boiled eggs, hoisted it and one of the crummy rattan handles snapped before we even crossed the living room floor.
Also lost: one of my children. Did a quick playground scan. I was either on the phone talking to a friend who'd just had a sad break-up or washing Ned's filthy sand-caked arms and legs when I realized Alex is not here. Not here. Really not here. In a daze I called Jeff. Then I called the police. While I was making all these calls, I walked from the 76th Street playground to the Boat Basin so I could check the bathrooms. Walked back to the playground. Then back to the Boat Basin. Finally I stood in front of the playground with Ned and waited for a cop on a scooter to show up.
The cop seemed sympathetic but I'm sure he was thinking of his own wife and kid and how she'd never take her eyes off him, never have to call the police in some enormous municipal park that's more than 800 acres, never have to face that she simply wasn't watching when she should have been. Of course if she did have to do this, the police would all know her and her kid, so it would all be worked out quickly and perfectly. The smiling wife, the freckle-faced boy, the barbecue invitations that would follow. He took a description of Alex. "I'll call for a cruiser," he said, and Ned and I stood there and waited some more.
Ned was excited to be sitting in a police car. "Will they run the siren?" he asked. "God, I hope not," I said. "That would mean there was really something to be alarmed about." I squinted into the late afternoon sun and tried to visualize Alex walking alone in Central Park. Would he still have his sandals on, or would he have taken them off and left them while he strolled on and on? Would people look at him curiously, try to offer him help, ask his name, give up when he didn't answer? Would anyone try to take him? Would he go? I didn't think so, but who knows? What if they offered him chips? Chocolate? You'd have to know just the right words to use with Alex. "Candy" wouldn't get you very far, but "pretzels" might get more than a flicker of interest.
It's hard to really picture your child going off with someone who means to do him harm. Or even someone who doesn't mean to hurt him, but does want to take him. And this person likely has a completely different definition of harm than you do. It's hard enough to picture your child when he's missing. You don't want to imagine the screeching brakes, the horrified faces, the scary dark basement.
So I stopped doing that and just kept picturing Alex, thinking that if I could just imagine him in the right place - the sprinklers, or maybe the big marble slide at the 68th St. playground - I could make him appear there. The cruiser stopped by the nearest playground just south of the Boat Basin and I ran in and scanned frantically for a skinny boy in a black T-shirt. On our way out a park employee holding a rake waved the cruiser down and asked, "Any news?" The cops shook their heads. "How could she know he's missing?" I wondered. One of the officers swiveled to look at me. "Don't you realize? The entire park is out looking for your son."
This floored me. Finally I felt shocked and weepy instead of merely stunned and stupid. It was reassuring to know so many people could be keeping an eye out for my little son ("Nine... light brown hair ... brown eyes ... black t-shirt ... calf-length kakhi trousers ... likely won't answer when you call his name") and even more frightening to wonder what would happen if he'd left the park.
We drove to the playground with the big marble slide - it was weird driving along paths in Central Park that we always walk - and he wasn't there, either. We were on our way to the zoo when the call came in that a small boy had just approached the zoo's garage entrance, so we went there, and there was Alex, surrounded by park employees who were smiling and chatting him up. He was barefoot, and I threw my arms around him and burst into tears. He seemed happy to see me, too.
"You're not mad? You're not going to yell at him?" one of the cops asked "No! No, I'm just so relieved. I'm so happy to see him," I said. And I was. I wasn't a bit mad.
Then we got a ride home in the police cruiser, Ned, Alex (with his filthy bare feet) and me, silent and miserable and relieved and shocked. Then, because he'd run away, I wouldn't let him watch Elmo. (October 2007)
The story's out about Alex getting lost last summer. First I'll say that this could've happened to anyone, and I think Jill did everything right to solve the problem. She notified me at my office and I notified the cops and my boss Howard (the latter immediately looked at his watch to see how many hours of daylight were left, and said, "Do you want us to go help look for him?"
"I hope you put Alex's name and phone number on every piece of his clothing!" Aunt Julie said afterward. "But not his shoes, as he dumps those. Jesus Christ. And Jill should read Gone, Baby, Gone, of which I just happen to have a copy."
Dear Reader C. asks, "Is it possible he thought it was Jill and Ned who'd gone missing rather than himself? I'm just wondering if he knows where the edge of the permitted zone is, but it wouldn't surprise me at all if it turned out he knows, but is not inclined to accept said boundary."
Alex's self-imposed boundary that heart-pounding afternoon was the garage of the Central Park Zoo, where he was eventually found. He left a playground right off the intersection of Fifth Avenue and East 72nd Street. The Zoo is off Fifth at East 64th Street, eight blocks straight south. I don't think he would've had to have crossed a street to get to the Zoo, but could've run to it using just park paths and underpasses. I also believe Alex - who'd just returned from sleepaway camp, which was his first week away from home that didn't involve hospitals, oxygen tubing, and spinal taps - bolted from the playground in extravagant new independence, and just ran. Maybe as the wind came across his cheek he felt for one of the first times that life was going to turn out right after all. Maybe he felt this right up to the moment he turned around and didn't see mom or Ned, and didn't recognize a soul.
We all know the stories that seared my mind for that hour as I sweated into the phone in my office. But strangers with candy aren't as prevalent as we all think - this I do believe - and such a stranger wouldn't have much chance of enticing Alex anyway unless he had Saltines and happened to be wearing an Elmo suit. My big fear was that Alex would leave the park, get out to Fifth, and plowed down by a car.
Alex did what an infuriating number of tourists in Manhattan can't manage to do: He fixed Fifth Avenue on his left and, perhaps recognizing a few landmarks, set out for the Zoo, where he'd been on school fieldtrips. Once at the Zoo, he bee-lined for the building where people seemed to be wearing something closest to uniforms (green garage-worker overalls). Of course this is all guesswork on my part. Maybe he did dart into Fifth Avenue and made brakes scream and cabs bounce on their front tires. But I don't think so.
Still, why take chances, when every weekday morning brings an autism e-newsletter with news of lost kids who don't talk much? Jill, once her pulse calms down, investigates proximity pagers that trigger an alarm when the wearer passes a pre-set distance. Howard suggests a bracelet like Alzheimer's patients wear, but I think Alex would go crazy trying to pry this off. So I go to Staples and buy Avery business-card stock, and on my Word app at work I make up a two-sided card. One side says, "My name is Alex. I am autistic. I don't talk much. My parents' numbers are ..." I pass this phrase through an online translation site, and on the other side of the cards print, "Mi nombre es Alex. Soy autista. No hablo mucho. Los números de mis padres son ..."
Alex doesn't leave home anymore without one of these in his pocket or backpack. Howard also suggested putting some picture on the card that Alex would like, such as Elmo. That hasn't been necessary, so far. (November 2007)
I take Ned to school one morning, and we're waiting for the elevator in the lobby of the building. His school building houses several schools of different grades, and one of these is a high school for students with special needs.
Beside the elevator, some of the students of that school are waiting to be escorted up to their classrooms. Most are almost as tall as I am, but a lot thinner, their elbows and necks Alex skinny. Two of the boys rock as they stand. Another flaps his hands. The eyes of one seem locked in squints. One boy pats his own face with both hands, incessantly. Ned doesn't talk or move much as they file past.
"Think Alex will be like those boys, Ned?" I ask softly.
"Alex is already like them," he replies.
I used to look away from such young men. Now I watch them and wonder what makes them tick. Did they like Elmo until they were almost 10? Do they still like Elmo? Jill has always said that it's one thing to see a cute little boy who's autistic, but another to see that boy as he grows into a teenager. "Then," she's said, "maybe people will think, 'Not so cute.' I never want Alex to be one of those big kids little kids are scared of."
Alex will be 10 next summer. Already I sometimes have to wince and brace my weight when he pulls my arm; sometimes I have to brace my feet a couple of times. That grip I still recall as firm but feathery back in the NICU is now stronger with eventual adulthood.
Flaps his hands. Pats his head. Little kids are scared of. How Alex is doing in public:
Restaurants. We've been working on this for a few years, with good results. Fast food and pizza haven't been problems for a while, and even if they are a bag of pretzels and a banana tend to keep Alex at the table, and boltings toward the industrial kitchen or the front door to a minimum. Last spring, in Chinese and Vietnamese joints, we thought rice was the food that would keep him glued to the table and dining with his family. The other night in a Chinese place, however, Alex wouldn't touch it (why the hell not?), instead drumming the table with chopsticks and pivoting in his chair to stare out the window. Halfway through the meal it struck me that the behavior of a baby and the behavior of an obnoxious sophomore are identical.
On the street. I still do let him run as much as a half-block ahead - a boy needs the wind on his cheek - and lately my concerns don't center on him possibly running into traffic. He stops at curbs and holds up his paw when I call "Alex! Street! Hand!" and still pauses no matter how far away when I call, "Alex! Wait for Ned!" No, the problem is that he'll dart like a dragonfly into doorways; many a Manhattan doorman has mistaken Alex for just an excited rich kid until said doorman gets a look at my clothes. Alex is spellbound by small windows that are re-enforced by chicken wire. What does he see in that pattern? He also loves the round ER doors of the nearby hospital where he was born. "No, Alex, you are not going in there!!"
Shopping for clothes. This is Jill's report. "A couple of years ago, I took Alex shopping, and for one brief moment he seemed pleased and mildly excited about a striped T-shirt that I showed him. (This was during his black T-shirt stage.) So I bought it and he agreed to wear it, and remained unswerving in his affection for it. Another time I took him shopping and he just shook his head and said, 'No! No!' to everything. I don't have a real consensus on what he thinks about shopping. I think most of the time he thinks, 'What a snore - why does Mommy always want to do this?' And other times he either thinks, 'Well, okay, I guess I can consider some wardrobe additions,' or 'I'm not in the mood for this today.' Recently I bought a few things for the boys online, and when they came, Alex seemed genuinely excited - delighted, even - to try them on and wear them."
Alex seems to do his best work in public when we're not around: His teacher reports that in school he's reading aloud. "You're reading aloud in school, Alex?" I say. "How come you never read aloud for us?" He keeps looking at Elmo. (November 2007)
Some people Alex greets at the door, with either a wave hello or a flapping of the hand and repetitions of "Bye bye bye." He doesn't have friends as far as I can see, and I keep hearing the words of the social worker way back in his pre-school: "I wouldn't say any child in this building has what you'd call 'friends.'" Alex often stays glued to Elmo, too, during family gatherings (through many of which, to tell the truth, I'd watch "Star Trek" if I thought I could get away with it). He connects with Ned somewhat, largely due to Ned's insisting lately that Alex play with him on the couch, by "play" I mean kicking and Ned slapping a pillow that Alex holds across his face while he dissolves into giggles.
Sometimes Alex doesn't want to play. "He never wants to do anything but watch "Elmo" and maybe amusement parks!" Ned exclaims. Not true, of course, and sometimes Alex also connects with Ned by knocking over whatever Ned has built out of blocks, then giggling while he's marched to his room. The other morning, I discovered Alex and Ned sleeping in the same bed, Alex's arm draped across Ned. Across Ned's throat. Brothers.
"Life is all about connections," says Jill, her eyes glazed and far enough away so that I wonder who she's thinking about.
But lately on school breaks, Alex has been repeating phrases. "Bye, Richard! Bye bye, Jesse. See you Monday!" Richard is in his class, and I assume Jesse is, too. Is he remembering these boys, thinking about them? It's possible, at last, such connections: Once during an endless vacation I was helping him write his classmates' names, and he was so thorough about it he wouldn't stop until he'd also written "Alex."
So we head to the fall conference with his teacher, and really for the first time we see how hard Alex works in school. We learn lots of tips, such as to use the numbers on a yardstick to help him add, to make him write on narrower lines with a short, light pencil, to make him count on his fingers, and to guide his hand while he's writing with no more than a pinkie. We see how Alex is learning to spell and read using sight words such as "bat" and "zebra," and on the board he writes his name - with not so much as a pinkie's guidance - and uses a pointer to tell his class that today it is 40 degrees and that it is Thursday, November 29. He counts all the days of November by tapping the pointer on each one across a Velcro calendar. His classmates watch.
I headed to the conference prepared to complain that I think he gets too much coloring homework and I see it as a waste of time, until his OT explains it's to strengthen his shoulder muscles for writing. And tape the paper vertically to the wall to let him color, she adds, to strengthen the muscles more. She shows us the putty in which she lets Alex find pennies, an exercise that also strengthens his fingers and grip for the pencil. I never would have thought of that.
Alex won't let anyone else lead the national anthem or The Pledge of Allegiance.
Then his teacher tells us that Alex has been getting other kids to play by putting his head in their lap and letting them put their heads on his lap. "A lot of these kids aren't social at all," she adds. "He makes all the other kids laugh. He's a very social boy. He loves all the other kids."
"Ned has dragged him into the world to a certain extent," says Jill.
There is no Jesse in his class. "That's a little girl in another class," his teacher says. "So I took him over to her one day when school was over and said, 'Look, Jesse is leaving. Say goodbye.' He couldn't have cared less. He just likes saying 'Jesse.'"
"So why's he say her name all the time, huh? What's up with that?" wonders Jill, one of my own one-time ignore-her-so-she'll-like-me targets. I must warn Alex where this can lead, though offhand I wouldn't say he's the only one who needs to make connections. (December 2007)
"The Child Study Center at New York University will halt an advertising campaign aimed at raising awareness of children's mental and neurological disorders after the effort drew a strongly negative reaction. The two-week-old campaign ... used the device of ransom notes to deliver ominous messages concerning disorders like autism, depression, bulimia, and attention-deficit hyperactivity disorder."
This was in the Times a couple of weeks ago. The ads are gone now from the sides of New York buses and phone kiosks, but before they were ripped down I walked right by the bulimia ad. "We have your daughter," it read, in that wacky newsclip font that always sort of made at least one part of kidnapping look fun. "Hey, that's pretty cool," I thought. "But then, I don't know anyone with bulimia."
Continued the Times, "The note about autism, for example, read: 'We have your son. We will make sure he will no longer be able to care for himself or interact socially as long as he lives.' Advocates for children with autism and for other special-needs children said the ads reinforced negative stereotypes." Organizers of the campaign said they got thousands of calls and e-mails, most bitching, but one from a woman crying and claiming that the ads said exactly what she felt most of the time about her child.
"It's not clear what the ads wanted you to do," said Jill. True, and though they may have made a better art project, the ads did seem to voice much of what I live with, projecting to me anyway something I don't see much in advertising: truth.
In bad taste? "It made people uncomfortable," my boss Howard surmised. "If you make people uncomfortable and there's change, that's good. But if you make people uncomfortable and they're just uncomfortable, that's not good."
Alex's autism makes me uncomfortable, like when he screeches on a bus or tries to run into doorman buildings in which we do not live. When I wonder if he's going to die muttering on a park bench 40 years from now, and when Jill tells me that I can "no longer say that to his mother," and when I'm ashamed because I realize that of course I can't say that to his mother.
When I can't relax at a New Year's Eve party at Aunt Julie's, chat with other guests and get quickly drunk because I feel I must keep one eye peeled for whatever Alex is getting into, such as pushing against the screen of Julie's flat-screen TV. When I see him making "tremendous progress" in 4th grade - and he is! - as defined by writing without help on the chalkboard, slowly counting the days of a month on a brightly colored Velcro calendar, and in general doing things, I try to not remind myself, that I might see typically developing students doing in a preschool. When I see him blast "Elmo" through religious family dinners, rip open Ned's birthday presents, or walk into our living room naked in front of our neighbor's two little girls.
The girls don't mind, I'm assured. The family plows ahead with the Seder, speaking over Elmo's observations about hands or the Wild Wild West. "Jeff, there's nothing here he can hurt!" Julie assures me. And there isn't. Well, one flat-screen TV.
People not minding my son just makes me uncomfortable. I don't know how to change that. (January 2008)
This is the year we move Alex on from Elmo.
Though he has other tapes and DVDs - "Arthur" and Charlie Brown," Mother Goose tapes, tapes of what one neighbor calls "religious kids in shorts outside singing" - it's mostly Elmo that Alex pops in while eating his dinner or just killing time. He even watches when company comes over. Relatives have come to put up with it. I don't know if they realize how deeply we want him to do something else.
"Is he going to watch Elmo when he's 15?" Ned wants to know. Good question. I've heard about grown-up autistic kids who watch baby cartoons. But Alex won't if I can help it. This is the year we move Alex on from Elmo.
Elmo remains huge. A few holidays ago, Aunt Julie hit a home run with the Tickle-Me Elmo; Alex ripped into that present - remember that glimpse of the box as you start to tear the paper faster and faster? - with a heartfelt spirit of "receiving is pretty nice, too," which is a line from a Charlie Brown Christmas book I bought Alex last month. Alex also can't pass a toy department without rooting out Elmo and the Singing Pizza. "El-MO?" Alex will say, one hand raised. "Watch El-MO!"
Some Elmos have already left our apartment, gone on Freecycle, a local, online giveaway extravaganza. "Thank you so much!" said one woman who picked up one for her preschool class. Don't tell Alex.
Except I have. "This is the year you move on from Elmo, Alex," I say. He keeps watching, rewinding over and over the parts he likes of Elmo exploring the world of hands, the world of food, the world of water.
"Elmo Food!" Alex will say, handing me the DVD remote.
"Alex, you can figure out how to work this!"
"Elmo Food!"
Jill and I have decided to keep "CinderElmo," "Elmo's Peter and the Wolf," and maybe a couple of others. "Anything with a narrative is fine," Jill says. "We've got to get Alex more into narrative." But one by one, many of the Elmos that have drilled into our brains over the months will, like victims of the mob in the marshes of north Jersey, simply disappear.
We will replace these offenders with something we can stand. Peanuts, for one. The Halloween and Christmas classics, of course. The other day I had a few hours to kill so I took him to a Border's and picked up the DVD of the Thanksgiving show - never one of my favorites, but at least there's nothing red and furry in it. "Thanksgiving" lacks the power of the two classics; it's almost too soft. Alex doesn't seem to like it as much.
There are a million Charlie Brown stories in the naked city. I want "You're In Love, Charlie Brown" or maybe "What Have We Learned, Charlie Brown?", in which the gang visits the D-Day memorial in France. We've got some dirt-cheap dirt VHS coming, ones I've never heard of. (Says Jill as she keyboards across eBay: "'We'll Never Run Out of Story Ideas, Charlie Brown.'") We supplement Alex's experience with figurines. He has Sally, two Snoopys, Charlie Brown in a baseball uniform, and, somewhere in the basement, Lucy. I feel this helps him with learning imaginative play.
It's saying something, but "Arthur" I think I could watch even more than the best Charlie Browns (and despite the hoopla of "moving Alex on," this is kind of also all about getting something in front of him that I could also watch). "Arthur" is all about childhood angst and pressure: bullies, tough teachers, spelling homework, learning how to mine success out of failure. It paints adults as sometimes slovenly - in one, Santa has a five-o-clock shadow - and given to pressures of their own. That's a narrative I can get behind. (January 2008)
For a seemingly endless number of months/years, Alex has slept poorly. Abed by 8:30, yet popping up two or three times a night, often getting up for the day as early as 3:30. Jill and I took our now-fabled turns - "Night Duty" - escorting him back to bed. About the best we could hope for at one point was that one of us would return him to bed and lay down with him and maybe give him a swallow of Benedryl or, lately, one of Jill's homeopathic sleeping pills dissolved in water, and listening to him chirp and chatter and giggle for almost two hours before both he and the unfortunate one of us on Night Duty would doze off for a couple of hours until it was time to rouse him for the school bus.
"When you go to bed tonight, set your alarm for about two in the morning," I used to tell people. "Get up when it goes off, walk into another room of your house, and stay there for at least half an hour. When you come back to bed, set your alarm for about four, and when it goes off do the whole thing again. Try that for three or four nights. Then you'll have an idea how we're feeling."
He would wake up and start to giggle if in a good mood. If in a bad mood, he'd demand pretzels and Elmo in the deep dark.
"Pretzels! Watch 'Elmo'!"
"Alex, go to sleep!"
If we were lucky, he'd sleep until about 4:30 - an hour I suddenly began to find civilized enough to start my day - when he would get up, turn on all the living room lights, shut our bedroom door (though not Ned's), get himself a bowl of pretzels or Goldfish and slide in an Elmo DVD. We'd find him there when we got up around six.
Dare we say that lately, however, Alex's sleep has been more normal. We've upped his bedtime Melatonin to two capsules, and coupled with his Topomax it actually seems to make him sleep through.
"Maybe he also understands finally that we're not going to stay in there with him," says Jill, and it's true. Though one of us still lays down with Alex when he goes to sleep - as much out of exhaustion as out of parental love - we've stopped climbing into bed with him in the middle of the night.
There are still rough nights. "There was a certain amount of laughing," Jill reported this morning. She had Night Duty last night; this morning, when I woke Alex for the school bus I found the cup of her pill and the water empty. "But I took him back to bed and he settled right back down," she adds.
Still, the months of busted sleep have taken their toll. "Tonight I'm prepared," Jill announced last night as she came to bed carrying a plastic cup of water and one of her pills. "Alex may not wake up every night anymore," she said, "but I still do."
"So who has Night Duty to care for you?" I asked. "Maybe Alex should. Maybe you should run in there in the middle of the night and wake himup!"
"'Alex!'" she replied. "'Chocolate! Watch "Jane Austen" on "Masterpiece Theatre!"'"
About the closest Jill has come lately to being up for some member of our family was the other night, after an evening on the town when I'd downed two martinis on top of four glasses of white wine and she just refused to let me pass out in peace. She claims I said things from the comfortable, comfortable bed like "Did you ever try to stop a building from falling down?" and "You know those back molars? Cucumber goards! Like Indiana Jones!" and "Baaaaa!"
"You sounded so exasperated, so sure of yourself," she said far too loudly the next morning. "You sounded like you had such authority!" Comes from getting enough sleep. (February 2008)
"Who says I want a broad noodle?" -- Kramer, on "Seinfeld"
For a while in Chinese restaurants it was white rice with Alex. He almost choked on it the first try, but gradually he's figured out how to sit there and, when whapping the wall with a chopstick gets boring, spoon in some rice. So we ordered it the other day. He didn't eat it.
"Alex, chicken?" I said, spearing some from the chow fun from across the table. "Chicken?" He didn't want that either. Off the chicken and onto his plate, however, dropped a chow fun noodle. These are about an inch wide, gooey and salty. Alex ate it. I gave him another. He ate that. And so we found another key to open the door to Chinese restaurants, which Jill and I want us, as a family, to experience together.
Perhaps two nights later, we were settling down to dinner at the table (even Ned, who'd probably prefer to watch TV and eat hot dogs with Alex) when somebody said, "Alex is eating green peppers!" I turned in my chair to see him running away with a small plastic bowl of green peppers. We dive in when Alex does something like this, which may not be the best thing to do, but after all these years of feeding tube formula and saltines and Hebrew Nationals we can't just sit by and watch such moments evaporate.
"Alex! Green pepper!"
"Ymmmmm," added Jill. They've told us at school to say this when he eats, and apparently likes, something new.
He munched the end of one of the peppers. I could see it in there on his tongue; later we'd find chewed bits of green pepper in and around the couch.
Alex needs some weight. "How old is he?" Alex's new dentist asked the other day, handing us a new toothbrush. "Oh, ten? Small for his age, then?" Very. But filling out: shoulders widening, kneecaps no longer so much like little croquet balls. Alex does well with liquids - chocolate milk, vitamins, V8 juice - but feeding remains a thing. I think it has something to do with having had a tube down his throat for so long as a baby, plus having the feeding tube and rarely being hungry as a young toddler.
Most new foods get the Alex Stiffarm and his swift and sure "Noooooo," but how about that? Green peppers. We send a note to school, where he first tried bananas, which are now a daily staple.
"Maybe it's the crunch?" his teacher speculates in a note back.
So two nights later we catch him eating a cucumber. "Peel it!" says Jill. I say no. "There's more crunch with the skin on. Besides, I sometimes eat them with the skin on."
"That's gross," says Jill.
"Ned, you like cucumbers, right? Skin on or skin off?"
"Skin on," he says.
A night or so after that, he lingers around the table - we dearly wish he'd eat with us, you realize - while we're getting ready to twirl into our spaghetti. He starts trying to twirl some off our plates. Alex seems to eat spaghetti horizontally, holding one end of the strand in each hand and biting down as if cutting a thread when finished sewing. Though he has taken to using napkins, Alex doesn't eat with utensils. He giggles when I show him how to twirl spaghetti onto a fork. "Not off other people's plates, Alex, no." There are limits, even in the fever dream of learning to eat like a real person.
Could it be he's finally coming into the world in a new way? He brushes his teeth on his own. He hangs up the phones if he finds them around the house. For the past six weeks or so, if he's woken up at night he's gone right back to sleep when we've escorted him back to his bed. We used to crawl in there and snooze with him - if you ask Jill she'll tell you that this, like most loopy procedures in our house, was my idea. It was loopy. Now, it's apparently unneeded.
He works the green pepper and then comes over to the table to grin at us, green flecks in his teeth. Where did we put the toothbrush? (February 2008)
I was napping -- an event in itself -- and I'd heard Alex's respite worker/babysitter arrive a little before 6 p.m. on Saturday. A few minutes later, Ned appeared at my bedside. He didn't seem to know whether to laugh or cry. "Mommy says Alex has bumped his head and has to go the hospital," Ned said.
I'm proud of the questions I quietly asked him as I pulled on my socks: Where is Alex now? Is he awake? Is he still bleeding?
In the bathroom. Yes. Yes oh yes.
Alex had fallen off his bed a little before six (THUD!) while jumping on it. He'd gone immediately to the bathroom to try to clean the blood out of his hair and off the back of his neck. Witnesses later said Alex was mad, weeping perhaps because he didn't know enough swear words, his mouth a tight rectangle of what goes through your mind when you've done something to make your head bleed really bad. By the time I got there his hair was matted with red, and all the towels smeared with pink.
"This is hospital territory!" Jill said.
Those familiar with Alex's birth know that we'd rather seek medical help in a manhole than at our nearest ER, which is 10 blocks distant and in the hospital where Alex was born and we were treated like crap a decade ago. So we press a white washcloth (why are washcloths always white at moments like this?) to the back of Alex's head, grab a cab, and head to a different ER, 30 blocks south.
SRO there. Everyone looks sooooo happy, too, but of course few persons come to an ER because life is working out right then. The electric revolving door is broken. The guard hands me a sign-in form and a pencil. I write "head laceration." ("Where'd you get 'laceration?'" Jill wants to know later. "It was a bad cut." She should talk: At one point she'd tell me that the human skull was very "vascularized.")
"Do you have a pediatric emergency room?" Jill asks the guard. No, he says, do we need another pencil? Alex says little, but at least he has stopped crying. I park myself with Alex's bleeding head - the cut has to be an inch and a half long -- toward the glass in front of the intake nurse's desk. From behind her glass the nurse silently slides out gauze bandages. I start to get mad that most of the people she's dealing with aren't nine years old and autistic and they aren't bleeding. "Most of the people here don't need an emergency room," Jill says. "They just have nowhere else to go."
The bleeding slows. Does he even need to be here?
"It's a gash!" the intake nurse tells us when we finally get to see her. "Of course he needs stitches!"
Alex won't let her take his vitals. "Well then we have a problem," she says, and when I ask how long the wait will be for a doctor she bounces her finger down the names ahead of me and counts aloud: "One, two, three, four, five, six, seven, and eight."
My antenna still works when it comes to what's going to happen with Alex in a medical situation with strangers. "Let's go," Jill and I say. Where? We grab another cab and make a play for close to home.
The first thing I see in the pediatric ER of Alex's old hospital is a row of bulky vending machines. One of them dispenses hot pizza; I'm sure it sucks, but it's the thought that counts. We see an intake nurse within about 15 minutes. "Will you have to shave his head?" Jill wants to know. "Nah," the nurse says. She gets Alex counting and playing to take his vitals, and soon we find ourselves in a room with penguins and polar bears painted on the walls. A young British doctor stands in front of us.
"I'm sorry," the doctor keeps whispering to Alex as he examines the gash. Alex keeps turning his head to see what they're doing. They dab jelly along the edges of the wound. "Alex, they're just making you a little numb for when they put the staples in." We kill the time for the jelly to take effect by raiding the Family Life book cart right outside the door. I don't remember what books Alex picked out; of course I wish he could tell me.
"He's autistic," we tell the doctors.
"Yes," they reply. "How long since he's had a tetanus shot? Are you guys okay with vaccinations and shots?" They wheel around a portable computer to take our insurance info.
Then comes the evening's climatic tussle over getting the staples in. I hold Alex's head, then we try him with his head on Jill's lap, but that doesn't work too well, either. "I know what to do!" Jill says. She shifts herself and Alex, and it works. Takes me back, to see Jill in action like that in a hospital one more time. "One more right there," says a second doctor to the British doctor, working over the staples. "There's hair under one right there." By the last staple, Alex has seen about enough emergency rooms for this Saturday evening.
"Look at that," says Jill. "The hair really covers them." They'll come out in a week or so. It was as nice as it could've been to take Alex to the hospital for something any stupid kid might have done.
We get home, and Ned has made Alex a card, with birds inside colored in light-blue crayon. "Get Beter Brother," it reads. Jill is mad that Ned had his Lunchable for dinner. "But I guess if your brother goes to the ER," you admits, "you can have your Lunchable for dinner." (March 2008)
Hey! Alex made a construction-paper Easter Egg. We hung it on a string from the knob of my front closet door. One morning as we were headed for the school bus Alex was fiddling with the egg and the string broke. Intending only to help, I picked it off the floor and threw it away. Right in front of Alex.
"Hey!" he barked. "Hey HEY!"
"What'd you expect?" Jill said. "You threw it away right in front of him." He yanked it out of the wastebasket and hung it back on the door.
"Hey!"
What Would Jane Say? We've been taking Alex to a music class. I like this class: It's nice to be in a room with other parents and not stand out at all. The class is free, and it should be fun - the "Hokey Pokey" and all that - but it's held in a play space used for other classes for autistic kids, and in addition to the keyboard and the bongos there sits, scattered around the music area, toy grocery carts and dollhouses. Every class, Alex would like to ditch the "Hokey Pokey" and get his hands on the carts and houses. As I hold him on my knee and place the drumsticks in his hand to make beautiful music, he squirms and wriggles and thrusts his arms up and demands, "House! Cart!"
My method of controlling him when he gets like this is foolproof: I pass him off to Jill. He settles on her lap and continues squirming. Just as I'm getting ready to bag the class for this week, Jill says to Alex, "Alex, sit still. What would Jane say?" Alex goes still. Jane is his teacher.
It's encouraging that at age 10 Alex is listening more to the authority of the real world than to the authority of his parents. I'm so tickled I send a note to Jane next morning. "We do the same thing here in school to get him to calm down," she writes back, "except we say, 'What would mom and dad say?'"
On the rug, Alex! About six months ago, we finally got rid of the boys' small dining table and chairs. We (mostly Jill, assisted by my promise to help her "sometime") moved the hutch over against the wall and the red chair against the other wall under the mirror. This opened up the living room/dining room area tremendously and lent the whole room an airy ambiance until Alex decided that the emptied path of hardwood floor was the perfect place to arrange his toys.
The three barns; the white Hess 16-wheeler grandpa gave him; all of the plastic giraffes, paraded by order of size and color; the toy Hess fire truck from grandpa; the toy fire helmet; the crash helmet Alex wears while on his scooter; the Hess helicopter and little motorcycles from grandpa (I've got to buy grandpa something from Hess next holidays); two or three books and a bowl of Utz Extra-Dark pretzels. The trucks sit together, the barns sit together. Beside the fire truck sits the fire helmet, and beside both of those sits the toy plastic Dalmatian Alex picked up a couple of weeks ago.
The display stretches from in front of the TV nearly to the dining room table. "Alex, toys away!"
He picks up the fire engine and puts on the fire helmet and actually does take one step toward his bedroom. But he's only waiting until we turn our back to set both the toys back down in front of the TV. After the first several dozen times, I'm no longer fooled by this.
"Alex, toys away!"
He puts them away, making several trips, and I think, "Great - got what I wanted and I tired him out!" I'm in the kitchen to help Jill with dinner or something no more than a few moments, of course, when I come back to see he's hauled out all the toys again, and added the toy plastic gorilla and the toy plastic polar bear, head to head on the floor near the hutch and apparently deep in conversation.
"Alex, this isn't fair! You don't own all of the living room!" Then I look at the rug that sits beneath just our coffee table. "Alex," I say, "you can put the toys on the rug. Just on the rug."
"On the rug," he says as he sets about arranging them there. Good thing. We wouldn't want to find out what Jane would say. (March 2008)
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