He'll Cry; Report Card; A Typical First Day; Our Boy; Homework; He Has a Plan; Homemade Homework; C-O-L-D?; Learn; First Grade; O Say Can You See; Read the Street
Alex's first morning of summer school gets off to a shaky start when he demands pretzels for breakfast, and I present Cheerios. "Pret-ZULS!"
"Alex, no. Cheerios. You're going to school this morning and you need Cheerios."
"I'll cry," he says. "I'll cry." This is his newest sentence, whenever he doesn't want to do something. I'm thinking of using it at my job.
"C'mon, Alex, you're going to school today."
Alex -- actually, Jill -- has survived a week and a half of school vacation. She and our babysitter did their best: Chinatown, playground runs, The Cloisters. He spent time watching the video "There Goes a Police Car," especially after I bought him a toy police helicopter. On Monday, July 5th, the day before summer school began, we all went to Target. Alex was probably delighted to get back to school.
There have been a lot of school days under the bridge since three years ago, when he cried for days over having to go to pre-school; I used to deposit him in his classroom and sneak out, feeling like crap, when he wasn't looking. When I came to fetch him on September 11th, he was probably the happiest person in New York City that morning. In the months since, school has become magic for Alex. Last September, he cried after we visited his soon-to-be school and then had to come home again for a few days. This summer school will be a romp.
We have to guess just when, on the morning of July 6th, to go down for the new bus --- Alex is 20th on the pick-up list, and the bus starts pick-ups at 7 a.m. Alex is headed to a different school for the summer. This one is a nearer cab ride for us, and Alex was there just a few months ago for a special-needs fair. He should recognize it.
As I also expect, his bus never shows on this first morning. I hail a cab for the ride (10 minutes and just six bucks!) to his school. We get out, and he tugs me toward the building. A school police officer greets us at the door with a deep "Good morning!" Good morning, I say. I tell him we missed the bus and this is Alex's first day here.
The cop runs his eyes down Alex, and asks if he's special-needs. "Try that office around the corner," the cop says.
I do, and see a few people - a counselor, the principal - whom I know. This feels like old hat. I feel at-home and experienced, like a school parent, so puffed-up that I don't notice how Alex seems to be refusing to let go of my hand.
We get him squared away paperwork-wise and head for the cafeteria, where his class is gathering. It's noisy in here, like the indoor pool that used to drive Alex batty during swimming lessons. We find his teacher and some aides, and even a kid he knows from his classroom during the regular school year. "Alex, school!" I say, and for the first time I look down and see his eyes are moist. "I'll cry," he says.
He won't let go of my hands. When I try to slip off his backpack, he struggles to keep it on. He wipes his eyes on his sleeves. As long as I've known him, Alex has either cried or not cried. He's never turned misty.
"Alex, you know people here," I inform him. One of the therapists he had during the regular year takes him by the hand and says, "Alex, do you want to see Elmo?"
"I guess he's just upset to be here," I tell the new teacher, a kind-looking lady who speaks softly to Alex. "Is there anything special Alex likes to do?" she asks me, with the same kindness she uses to speak to Alex. I'm so thrown by his reaction this morning that, for a minute, I can't come up with anything. Goofball dad on the first morning of school. "Ah, well, he likes the playground," I say.
Well this school certainly has one of those, and the new teacher guides Alex to the window to peek outside at the jungle gym. I turn to the aide. "Should I sneak out while he's distracted?" I ask. The aide nods once, with decision. On the way out, I run into the therapist again. "He'll be okay," she says. "I just sent an Elmo in. He'll be okay."
I call our babysitter in the afternoon, to see what time he got home, and if he seemed happy. "Yes, he seemed happy," she says. "He turned to wave good bye to one of his friends." We'll see if Alex waves hello tomorrow when he gets on the school bus. Assuming the bus comes, and assuming he gets on it. (July 2004)
Alex's latest report card is in. He got mostly 3s this time, "3" being the best in such subjects as Basic Skills in Cutting and Pasting, Behaving According to the Rules of the School, and Participating in Activities that Highlight Historical Events." Alex hit more than three-quarters of the goals set in his previous individual education plan (IEP), things like sitting in a chair for tabletop tasks, standing on one leg, and walking on a 4-inch wide beam.
I went to Alex's last IEP meeting. There were half a dozen people there, and we went around the table and identified ourselves: "I'm so-and-so, the school psychologist." "I'm so-and-so from the City of New York Board of Education." "I'm Jeff Stimpson," I said when it was my turn, "and I'm Alex's lawyer." Everyone laughed. Then the guy from the New York Board of Ed sobered up and asked quietly, "Are you really a lawyer?" I wish I'd said, "...and I'm Alex's commanding officer" instead). Alex's teacher is his commanding officer for a big part of his life, a part we only glimpse now and then, and she's been doing a fine job. In good weather, she troops her class to half a dozen field trips a month. This has helped hone Alex's ability to walk down a city sidewalk without stopping traffic or my heart. Independent of his academic career, I'm also teaching him about caution around the driveways of parking garages.
With Alex, a lot of education continues at home:
Sleeping. This was solid for many months, but, my red eyes and fuzzy morning tongue aside, Alex's current trend of bouncing up once or twice a night points to developments in his body both disturbing and dangerous. Too many nights now Jill or I must usher him back to his room, watch his dark shape zip by the corner of the dining room table, slide him back between his sheets, hear the demand for "Water!", and feel our own sleepiness dissolve. What's making him do this? Lately we've turned to melatonin, which I see my spell-checker doesn't know. Can't blame it: I didn't know about the stuff two months ago, but now when we mention we're using it to coax Alex to sleep, parents of autistic kids get a smooth and knowing look on their face and say, "Ah yes. Melatonin." It won't dissolve in water, though, and must taste bitter because Alex's mouth purses when he hits the powder in the bottom of the little metal cup. Jill picked up the liquid. I insist on using up the pills, being a thifty New Englander who always slept well as a kid.
Conversation. I don't think I've ever used this word in connection with Alex, but now he's voicing requests and observations in two- or three-word sentences: "How about crackers?" "Kermit's eating crackers." "Want a hot dog" (not strictly a sentence, but he's entitled to a break). If language would bloom in Alex, our outlook on him would be entirely different.
Using utensils. It's not a good idea to eat hot dogs with your hands, particularly around Jill's couch. If we try to get Alex to use a fork or spoon, however, he just picks the slice of hot dog off the utensil.
Toilet training. I'm not going to say much about this, because I long ago swore I wouldn't and because I don't want my sons to slap me a home 35 years from now with any special joy. Alex has whizzed -- babies "wee-wee"; men whiz -- in the toilet bowl twice, both times just seconds before he whizzed in the bathtub and I caught him.
Blowing his nose. Could be critical in a kid who may have lingering lung issues. How do you teach someone to blow their nose? Even Ned just puts his nose in the tissue and makes a honking noise with his lips. Sometimes I don't even get it right myself. Without language, how does one convey this idea?
Alex's future educational goals include being able to throw and catch a medium-sized ball seven feet, jumping backwards and sideways, and coloring 3-inch simple shapes with no more than 1/2-inch deviations from the boundaries with minimal verbal cue. Sounds more complicated than it is, I think, but I do know that I couldn't walk a 4-inch wide beam no matter how many verbal cues I got. (March 2005)
It is the night before Ned's first day of school. I ask if he's ready.
"Awesome!" he replies. "I'm gonna love school! By the way, daddy, I made a mess of pennies, but it's all cleaned up."
The only experience Jill and I have had with real first days of school, of course, were with Alex. He cried the first few days - was the only person in New York City who was happy on the morning of 9/11/01, when I arrived to take him home - and all those first weeks he tugged back hard when pulled toward the school bus. I have no idea how somebody like Ned is going to take to going to school day after day for 13 years. (He doesn't have to worry beyond that, as I can't afford college.)
So, for the record again, Ned, how do you feel about going to school?
"I'm liking it."
But you haven't gone yet.
"Yeah, I haven't gone yet."
Ned then bumps his head on the DVD player. We punish Alex until Ned explains it wasn't Alex's fault. "Wait until the other kids see my bleeding lip!" Ned says. To cheer him up, I offer him a quarter. He turns it down, saying he'd rather have one of the foreign coins my boss Howard's son brought home a few years ago after a stint in the Navy. Ned incessantly thanks Howard and his son.
Navy? Hey! Mr. Midshipman Stimpson. Annapolis class of '22. Dress whites. Tickets to the Army game. Free tuition.
"Cereal will make my bleeding lip better," he says. "And some carrots. And macaroni. Daddy, just give me some carrots and hot dog and macaroni. It'll make my bleeding lip better. It'll make me do things."
There's much to do tonight. After the kids are put to bed, Jill irons name labels on their clothes as she picks out Ned and Alex's first-day outfits; she writes notes to the teachers, and packs the backpacks. I watch a movie and drink beer. "I think Ned's a little nervous," she says. "He said he wanted to bring Bully with him." Bully is Ned's red stuffed bull. The letter we got in July from Ned's kindergarten teacher said he could bring a stuffed toy. I agree that Ned is nervous.
"Well good," Jill says. "That shows he's not a complete idiot." Pause. "You're not going to print that, are you? I was joking. I just want my boys to both get into school, get good rank, and get out of my hair."
Next morning, it's reveille at 0630 hours. Alex is up and bouncy; Ned is dead to the world in our bed. I bring him to the couch, crank the volume on Alex's "Elmo" video, and watch Ned continue to sleep. I position a clock next to him, and take a picture.
"Ned?" says Jill. "Oh Nedlet. His eyes are open," she says to me. "Relax."
"I want chocolate milk," says Ned.
"Let's have a special dinner tonight," says Jill. "What do you want for your special dinner, Ned?"
"Paper," he says. (As with "complete idiot," of course, this is a joke.)
Alex's bus comes about a half hour before we are to take Ned to school. We all go down to the lobby. I want a picture of the boys on the steps holding hands; I want this picture for my aunt, who took a similar picture of her twin sons on their first day of school 40 years ago. Outside, Jill lets the boys walk off hand-in-hand down the sidewalk, and gets a neat picture of that from the back. It's a clear day, a cool morning, a touch humid.
Alex's scrambles onto his school bus with joy, and we three go back upstairs for a few minutes. "Is 'Sponge Bob' on?" Ned asks.
"Ned, you're going to school. You're not going to watch 'Sponge Bob.'" Ned's eyes widen and his jaw drops in the unmistakable "Nobody Ever Said Going to School Meant Missing 'Sponge Bob'!" look.
That mood evaporates on the walk to Lexington, where we'll catch the downtown city bus. Ned tries to climb every pole at every bus stop along the way. I snap at him about focusing on getting to school.
"I want you to stop being so negative," Jill says to me, as Ned darts down the sidewalk in front of us. "We don't know that much about typically developing kids, but Ned seems pretty typical to me right now."
On the bus, Ned gets quiet, with his arms folded; sometimes he chews his thumbnail. I feel the sweaty heaviness of too-little sleep ("0630...") I ask what he's thinking about. He shrugs his shoulders. Beyond him, out the window of the bus, I see bunches of grown-ups and kids, all in backpacks, trooping hand-in-hand in the pale morning sunshine. A fire truck passes us. "Where's firefighter school?" Ned asks.
At the school, Ned pauses for a picture with the police officers at the front desk before we head upstairs to his classroom. There we find his teacher. We don't know her yet, of course, but we ask about her summer. "Oh, okay," she says. "My husband had health problems. I had health problems. This morning, I sprained my ankle."
Her classroom is cool. Lots of stuff from nature. Lots of toys. Ned heads right to a cabinet of toy cameras, then stops at the nature table to tickle his nose with a feather, then heads to the Lego table. All around him are little faces like his, any one of which could become terribly important to us by next June. We pause for the "First Day" photo, an obligatory moment for Ned's smile before he scoots back to the Legos. It's there I bend down and kiss the top of his head.
Ned, mommy's staying for a few minutes, but I have to go to work, okay?
"Okay."
So on this day, at last, I have two of them out in the world. My heart feel as fragile as a TV schedule. At the end of the day, I call Jill. How was Ned's day? "It went very well," she reports. "He says he wants to go back tomorrow." (September 2005)
Jill and I have met Alex's teacher. It was nearly Thanksgiving before we met her, a lapse largely due to Ned starting kindergarten this year, which sapped all our attention. Plus, Alex seemed to doing well in second grade, almost on auto-pilot, at least to tell from the notes of this teacher, Jane (not her real name).
Jane wasn't supposed to be his teacher this year; Alex was transferred into her class a week into the school year for some reason we never figured out. Her class also had an extra kid because somebody in the Bronx got some kind of variance. The New York City Department of Education operates a lot like the U.S. Army.
"We will have seven children in our class, which as you may know is one over the amount I'm supposed to have," Jane wrote on September 29th. "I'm trying to get extra help, but you know how that goes. Anyway, Alex is right at home in this class. He knows where everything is better than I do. I have to tell him to put away the materials of one activity before starting another. His answer is 'Okay okay okay!' He makes me laugh."
"I took a great picture of Alex experimenting with magnets," she later wrote. "He kept trying to shake off the objects the magnets were picking up."
Experimenting? I liked that. Real students "experiment" in class.
October 6: "Alex is a good boy in school. He likes to empty every book off the shelves, but we make him put them back."
November 1: "Alex loves our pop-up play school, but he wants it in the front of the room only. He's so funny!"
November 17: "Today we asked Alex what he wanted to play with: the ball, or soccer, or jumping. Alex said, 'Relax!'" Jane also bought a copy of Alex, making me like her a whole lot. "I'm going to ask Alex to sign my copy. Alex also loves to potato chips. He couldn't eat them fast enough. He said, 'More please' and 'Thank you, Jane.'"
I've been anxious to see Jane's class, in which Alex engages in such new activities as yoga. It's difficult to imagine Alex going, "Ooooommmmm," let alone sitting for any length of time in that pretzel position. But it's apparently part of his blossoming secret life at school.
We get there just in time for our appointment, while Alex is down the hall in the cafeteria for lunch. Jane shows us the book area, which she says Alex keeps going toward. She finds a scrap of potato chip near the beanbag chair. "See?" she says, holding it up. "Alex was here!"
A teacher for many years, Jane used to work with more physically handicapped kids. This is her first year with kids like Alex in her classroom, which she has arranged so that each child -- all boys -- has his own desk in a slightly secluded position. Something about the room feels big, and I definitely get the idea Alex has moved on from first grade. The bookshelves are neat (despite Alex), the art hung straight, and everybody has his daily tasks spelled out on little cards velcroed to a strip near the door: Lunch, Math, Sweeping, Straightening Bookshelves (Alex's job), and Relax. (Hey, "Relax!").
"It was so funny," says Jane. "The other day, Alex gave us all a heart attack. We were out in the hall and all of a sudden he just ran bolting for the doors. We were all running after him screaming, 'Alex! No! Stop!' But he ran straight to the doors and stopped. Then he carefully closed one, then he carefully closed the other!
"If I look thin," she adds, "it's because I'm on the Alex Diet."
She shows us the music station, where Alex wears fat headphones, and the pop-up school house, where Jane says Alex likes to hide with a book and toys. She lifts it up, and I see his couple of Legos are still there, along with a book. "I keep the door up," she says, indicating the flap on the front of the schoolhouse, "but you know what Alex does?" Jane lets the flap down dramatically. We talk about the progress he's made in just the last six months, including his toilet training and that he now drinks liquid vitamins and medicine without a struggle.
Alex is due back any minute, and Jill and I feel it will distract him too much if he finds us here. As we gather our stuff to leave, Jane shows me the copy of Alex,; on the flyleaf, Alex has scrawled "ABCD..." I confirm for her that Alex can also write his name.
"Oh I know," Jane says. "I'm very proud of my boys." Pause. "They're my boys when they're here. I'm sorry..."
Don't be. (December 2005)
Alex's teacher says he had flag duty during the Pledge of Allegiance. "I told him to say, 'Stand up, boys!' so he says, 'Stand up, boys!'" She makes this Alex sound out of the side of her mouth, but somehow she is miles from mocking him. All the boys but one stood up, she says, and Alex went over and whapped him on the shoulder.
Teacher also says he sings "The Star-Spangled Banner." I believe her, as I heard him do this one night before brushing his teeth. Oh, he's no Rosanne Barr, but he does get excited about the "rockets' red glare." This 7-year-old autistic boy at least probably knows more of the words of the song than the average American.
Alex is studying sign language; they've sent home a laminated sheet of the days of the week in English and Spanish, though the signs are the same for both. What's the sign for sleep? I ask, and teacher shows me that it's praying palms, to the side and tucked under the cheek. I must remember that for 3 a.m.
Teacher reports that he often grabs a book first thing in the morning. We're all unsure if he understands that letters combine to make words and concepts, such as "red." We mention that a good way to show Alex "red" would be to take the letters R,E and D, and align them under a picture of Elmo. I mention sending to school a copy of Tom and Pippo -- Alex's favorite, which he can nearly recite -- to teach him words and rudimentary spelling.
"I want him to learn to read," says his teacher.
If Alex doesn't get "red," he sometimes doesn't get "homework," either, at least as a concept (I didn't much either, to be fair, especially in the spring of my senior year). Alex brings home sheets of cartoony animals, kids, little houses, and rakes and flowers. We sit over these with him and labor through them until they're sort of our homework, too. He has to count or spell the names of these. Mostly he wants to color. "Read aloud the sentence at the top of the page," the instructions say. "Below, ask the child to name each picture and them him or her to read the words below it. Ask the child to circle the correct word and copy it onto the write-on lines." I confess that half the time I don't understand the directions on the Problem Solving sheets. "Complete each pattern. Color what comes next." Too bad the sheet is in black and white.
Some of the sheets involve math: Teacher says that Alex understands the numbers themselves, but not what they mean. I try tracing one of his fingers across the paper when I say one, then two fingers when I say two, then three fingers and so on. Then it hits me that when we say "one" to him, we should give him one Goldfish cracker, "two" and two Goldfish, and so on. I think Alex would tackle calculus for a bag of Original Goldfish. "Pick a color," I tell him, from the dwindling number of markers in the tray. They're old and the caps are cracked and they're drying up; every week we throw one or two away, the felt-tips exhausted from months of helping Alex decipher the alphabet. Alex can't seem to hold a pen. He tries to grip it in all his fingers instead of just the index and the thumb. He looks over at the TV (even when it isn't on), at the cat (even when she's asleep), at the wall. I take his chin in my fingers, pivot his nose back to the grindstone, and say, "Pay attention." Sometimes this works. He can sort of write his name. (I like to think I taught him how to do this by co-signing copies of Alex.) He
He must study a letter a week, and one of his (our) tasks is to skim Jill's slippery Kilimanjaro of catalogs on the dining room table and shear out photos of cats and coaches, drawers and dogs, grapes and a gate.
This week's letter is H. "Hero," says Jill, "hands, hieroglyphics."
"Watch Elmo!" says Alex. (March 2006)
"The Cylons were created by Man. They evolved. They rebelled. And they have a plan." - Introduction to the new "Battlestar Galactica."
In her spring report, Ned's teacher says that Ned often has important information first thing in the morning. "I'm looking a little taller today. Did you notice?" she quotes him as saying. "It's because I am almost five." Another time: "Today I have a plan. First I am going to work at Legos. Then I will write a card. Then I'm going to paint. I have a big plan." And over crayons: "Look, I would put shoes on this guy. It's hard to draw shoes."
Ned's kindergarten year will be over before long. He has explored salamanders and seeds, dirt, paint, ice-skating, water, puppets, baking, and buildings. He has a teacher who's quiet, sweet, and warm, the kind of lady you like to have running the show when you're only five and most of the world is still out there. She likes him, too, and I think she manages to keep volumes of notes on the kids during the days. "Ned always chooses to work with George." "Ned enjoys his weekly gym class ('It's where I can get some exercise!')." "Ned is a big builder in the block area."
"I often suggest he include more detail in his work," she says, to which he replies, "'Oh, that's too hard. You're asking me to work too much.' And when I scowl, he brightens up and says, 'Tricked you!'"
I know that feeling, such as when I forbid Ned to watch Nickelodeon and I go to the kitchen, then return to the living room to find him pouncing on the remote control to change the channel from Nick, which he's been sneaking. Surely this talent of his can make us some money?
("Tricked you! ...")
They say kids develop personalities for home and for school, At home, Ned can needle me with his reluctance to do such chores as hanging up his coat, picking up socks, or coming when called to pick up toys. I often have to ask him three times while he stares at a toy and seems not to hear me.
"Ned," we demand, "do you do that at school? When the teacher asks you to do something, don't you do it right away?" He nods. "So," we then say, "give us the same consideration."
Jill, who in general is more on Ned's frequency (especially when it comes to staring at screens for hours and hours, if anyone asks me), says tactics most successful with Ned include pretend games, such as "the little toy" and "the little cat," in which he is "always an agreeable persona" in those roles. "When he gets tired," she adds, "forget it."
No kidding. The other night, Ned and I got into a tug-o-wits over whether the cold tap in the bathroom makes the water colder the more wide-open Ned twists the knob (it doesn't!), and over whether Ned would take some of the SAME cough syrup he's had before and always loved (he wouldn't). Finally, it just became a moment of me fuming at him and him squatting in the tub water and fuming like Calvin in "Calvin and Hobbes" - which is to say, a drawing of a mad little boy - until I smiled at the thought and he splashed me with bathwater.
"I find him easy to entertain," says Jill.
"Ned, do you behave this way at school!?"
I don't always find Ned easy to entertain, despite Jill's insistence during bad arguments that Ned and I have a lot in common ("Ned is just like you!"). I guess I'll just build on our common ground. We both like to walk. We both like the game "Dogfight." I like to trick people. I prefer to think I have a plan. He wants to be liked, and so do I. He's been issued a hard life young, and I sort of was, too. Most heartening to me is that part of his spring report that details what he did when a big wooden-block sculpture that he and his classmates had been working on collapsed into a pile of rubble.
"'Rebuild!'" Ned declared. "'We must rebuild!'" (March 2006)
Alex has been waiting for homework that engages him. A lot of the photocopied worksheets he brings home have to do with identifying pictures, then coloring them, based on the first letter of the word that names the picture, such as "jet" or "jump rope" in the J weeks. If I prompt him, he'll say the word matching the picture. Then he bears down with one washable marker and colors the whole area of the picture, taking no care to stay within any lines and not letting the marker up until he has a blotch of color. I don't know what he thinks of it.
"I think Alex's sees his homework as kind of a mish-mash," says Jill. "I think sometimes he doesn't know what to make of it, so it doesn't hold his concentration."
Then his teacher sent home a sheet of paper ruled horizontally. Down the left margin were such words as kite, kitten, kit (it was K week). "Alex, homework!" I call/
Alex's desk sits four feet from our dining room table and maybe 20 feet from the TV, where Ned was broadcasting "Sponge Bob." "Ned," I said with sudden inspiration, "shut the TV off for a few minutes, please." I'd read somewhere that autistic kids do much better with homework when the TV's off. You'd think such a tip would be commonsense fathering to me by this time, but still I had to read it somewhere.
Ned shuts off "Bob," especially when informed that Alex is about to do homework. Ned is mad for homework, and can't wait to get it assigned next year in first grade (I will remind Ned of this in about 10 years).
I've been working with Alex on handwriting by holding his hand in mine and guiding it gently through the letters (the "hand-over-hand" technique). After quieting Ned with one of Alex's coloring-centered worksheets, I get Alex to take the pen in his fingers and start on Kite. "Kite, Alex. K-I-T-E. Kite."
I feel Alex's hand start through the letters, pausing moment to moment but generally moving with featherweight force through the letters. The pen used to slip in his fingers; now I feel them tightening around the shaft of the pen this time, and my grip on his hand can loosen.
He does about three copies of the word, then starts the next line. His eyes leave the paper. I touch his cheek and steer his face back toward the paper. "Alex, concentrate."
He watches the paper, saying each word after he writes it. The tip of his tongue emerges pink between the right side of his lips. I lessen the pressure of my hand through Kitten and Kit.
I never thought I'd be a dad who'd inflict his work philosophy on his sons, but in my day the only way to learn to write was to fill up a blank sheet of paper over and over and over until the words came. So over the next few days, I hit Staples for horizontally-rule writing paper, and find some. On it, in clear black letters down the left side I write Elmo, Daddy, Mommy, and Ned. I figure to do many of these sheets, using words of and about people he knows. As he brings home two or three homework sheets a night and we usually have a backlog of sheets clipped to the easel by the door, it's probably not the optimum time to consider extra credit work, but I feel that engaging Alex is priority one.
Alex does the first sheet, tongue out, whispering the words, Ned's impatient bare feet propped the blank TV screen, and when Alex is done I slip the homemade homework into his folder for school, along with a note to his teacher.
On the night Alex is to tackle Jet and January and Job, his teacher sends back an encouraging note - we don't exactly tackle that clipped pile on the easel in order - saying she's delighted he's writing like this, and will continue to send such homework. I notice that Alex's tongue comes out most prominently over the longest word, "January." Next night, teacher sends home a list of his classmates' names, and I plow ahead on my sheets to Toast, Cat, and Grandpa. Gradually, I follow the advice of something else I read that says that when teaching handwriting to the autistic, start with hand-over-hand, and gradually start holding only their wrist, then their forearm, then elbow, and finally, shoulder. Maybe by Zebra and Zoo he won't need me to hold anything. We'll both stick at it, which is the only rule I know for writing anything. (April 2006)
Readers who've been paying attention know that I've been teaching Alex to write by printing one word, such as "Elmo," "Grandpa," or "Ned" on the left side of a piece of paper that is ruled horizontally, then holding his hand in mine and having him print the letters of the word I write. He's doing well at this, even though he can't say so.
In picking the words for the left side, I make use of what's familiar to him. This makes Alex interested, I think; his tongue comes out a little, and he peers forward. Last night, he leaned in and tried to look over my hand as I wrote "Cough." I picked this word because he had a nagging cough.
I'm left-handed; I sit on Alex's right to do this homework, so he couldn't see all the word at once. I had written the C and O, and was just starting work on the U, when Alex said:
"Cold?"
Jesus Christ. Can Alex read?
Alex has sat with books since his Early Intervention days, when the great therapist Ron would swagger like Santa into our Queens apartment with his bag of toys. Ron taught Alex to sit quietly and turn the pages of a book, and on recent evenings when Ned hogs the TV, Alex will squat on a floor cushion and thumb through a book. Once in a while, he'll spread the Times out across the floor, or even flip through the New Yorker. Most of the people I grew up with never read the New Yorker.
"He never holds what he's reading upside-down," Jill notes.
We usually read with him at bedtime, with Tom and Pippo and Green Eggs and Ham among his favorites. His teacher's has begun laminating words and phrases from Pippo for Alex to copy out and speak. His teacher sends home a note saying he loves to write on the board. (Alex also loves the closing chant at class-time yoga, she reports, because he gets to roar like a lion.)
According to Ron, our first clue Alex had a thing for letters came years ago, when Alex used to breeze through shape-sorting puzzles. Ron claimed this would likely later translate into an affinity for the alphabet. Alex does seem to have that: We'll cover entire sheets with copies of three or four left-hand words, and Alex often doesn't take his eyes off the paper once. He dutifully says the names of the letters after me.
I watch his face. His eyes on the paper and the tip of his tongue sticking out in concentration. I wonder, "What's going on in there?" I've never known someone who might be able to read but who can't speak, or at least doesn't speak much. Alex takes stuff in. But without conversation coming back out, how can I know what he's got in there?
"He feels no burden to tell us," says Jill.
Two things. I was giving him a neb the other night and he kept saying, "Lion. Roar!" And for months, Alex has been making little, apparently meaningless gestures with his fingers. He'll press the tips of the fingers of one hand to the tips of the fingers of another, weave them back and forth in front of his face, then spin around the giggle. Sometimes he does this just before going to sleep, too. (Once, in a freshly-awakened wee-hour moment I'm ashamed of, I actually mimicked it.) Many books I've read call this classic autistic behavior. Maybe it is. But the other night, having just tossed Green Eggs to the foot of the bed one more time, I tried to get Alex to stop doing things with his fingers and go to sleep.
"Alex, stop doing things with your fingers and go to sleep."
Instead, he turned to me and said, "Three." I had no idea this word had a connection to anything until I noticed his fingers. The thumbs and index fingers of both fingers were curled together to make ... a three. "Three!
"Zee!" he then said, forming a Z. "Four!" That was impressive: index and middle finger of one hand making a sideways V against the straight-out index finger of the other hand. How long has Alex been forming letters and numbers while no one paid attention, filling up lines on paper only he could see? Four is hard, too. I couldn't make a four with my fingers until I'd thought about it, and even then it hurt. (May 2006)
Alex and Ned both have homework. I'm a little jubilant that both my boys have come far enough in the world to hold such jobs, "jobs" being one of the biggest things they're both ever going to hold in this life.
Alex, according to notes from his teacher, is flying through his writing work in class. She has sent home Helping Your Child Become a Reader, a booklet from The No Child Left Behind program. Though I think the Bush Administration might do well to make sure fewer adults are left behind, too, I applaud their efforts. The book applauds some of ours, such as Jill's creation of a library shelf in their room, lined with books.
Perhaps the shelf has helped bookstores become Alex's new favorite haunt; he's turned down not only chicken and pizza but also saltines to keep squirming in his restaurant chair and saying "Bookstore! Bookstore!" Once in the bookstore, Ned takes right to reading -- generally some piece of literature involving a superhero -- but Alex bops around and around, pulling down two or three Elmo titles, two or three Richard Scarry, maybe the Cheerios playbook. Once Alex took a snack container of Cheerios out of his backpack and started eating them, squatted in the aisle of Barnes and Noble, over the Cheerios playbook. Once, of course, I didn't know there was such a thing as a Cheerios playbook.
I'm trying to teach Alex how to spell by having him trace the alphabet, but not in the right order. "Alex, find the A. Find the G. Find the Q." He finds whatever I request, without fail and with diminishing hesitation. Both Alex and Ned are writing letters to people such as aunts Betty and Julie, Uncle Lee, and cousins Susan and Carol. This teaches my sons to write and remember their family, and it gets me out of writing to relatives.
Writing is going so well that every now and then I ask Alex to do a word, he will turns to me and say, "You do it!"
Ned leapt the chasm this year to first grade, which is shaping up like his own mini-West Point. His teacher started right in with the homework, sending home small essays about his classmates that he must read aloud with us. The sentences typically run, "So-and-so likes spaghetti. Her birthday is February 4th. She loves Halloween. Her favorite toy is Barbie." This has obviously been read aloud to the class, as at our dining room table Ned attempts to bull through with fast talk and good-natured if faulty memorization.
"So-and-so likes spaghetti," he will begin, his finger sliding across the line far ahead of his speech. "Her birthday is Halloween. She is four. Her favorite toy is the Barbie doll."
"Now that's not what it says, Ned," I say, recalling suddenly how I flopped as an English tutor 20 years ago. "Let's take it one word at a time. This is a funny-looking word, isn't it? It has an S and a P and an A. What sound does an S and a P make?" Beside me, Ned surrenders to what Richard Yates called "the luxury of collapse," as his face hits the crook of his elbow and deflates there, like a POW's at the beginning of what will be a long, long war, "Oooohhh, I'll never get it..."
"You will, Ned. Sound out the letters."
"...Her birthday is February 4th. She likes Halloween..."
"Not 'likes,' Ned. Bigger than 'likes.' What's this letter here? An L. And this is an O. What sound do those make together?" It's inconceivable to me that I was doing this stuff a week before I realized that Ned doesn't yet know how to sound out each letter.
I scan my world for stuff that might help reading dawn for either boy: the IN and OUT and PUSH and PULL of the drugstore doors; the pink plastic P-I-G that Alex likes to play with; the box of stoned wheat thins in our cupboard. "Ned," I exclaim, as much to myself as to him, "look! What are the last three letters of 'Stoned'?!" Do I even want Ned to notice the word "stoned?"
The Helping booklet has also made me see I've been short with Ned during bedtime reading, when he asks questions. I thought that interrupted the story, and told him it wasn't good. Not so: he's supposed to ask questions. There is so much to learn. (September 2006)
"Ned," I feel like asking him, "is the world too much sometimes these days?" Maybe I will ask him that when I pick him up from his after-school program tonight and end another 11 hours of me wondering if he had a good day.
Ned emerges from the program with a classmate named James, and tells me that the art teacher took away the hockey puck Ned was painting. Why'd he do that?
"I dunno."
"I know," James says to me. What happened was something similar to what happened to me in eighth grade when I was just sitting there and yada-yada-yada I got detention.
Ned's first grade is a tougher transition than anyone warned me about. Last year, in kindergarten, Ned flitted from work table to work table, fingers in water or sand, smeared with paint or clay. This year, he says, is all sit and work. Ned says he gets no recess, no time for lunch. How many times a day do you get to go to the bathroom? Jill asks. Once. Once? Once. Jill glances at me. Once?
"We're not torturing your children!" Ned's teacher Vicki says to us at the school's first open-house night, where they give us questions and code words to help unlock the door between the little lives at home and at school. "Ask them what they do in 'work time,'" Vicki suggests.
Some mornings, work time for Ned begins around 7:50, when it's the turn of our neighbors to take Ned and their own little girl to school. When the dad and the little girl appear on the front steps of our apartment building, Ned's face melts. "Do you want me to carry you?" asks Nick, the dad, of Ned. Nick is serious. He does carry Ned, who accepts this gesture -- I wish somebody would carry me to the office sometime -- with more tears than grace, screeching and flailing like a child torn from his dad's arms at the gates of the institution.
One morning when I've got the duty to escort Ned and the little girl to school (she's a year younger than Ned), she cries for her mommy most of the way to the subway station. "You'll see her later today," Ned says. "Don't cry." On the subway, she and Ned often talk to each other; I see their little jaws and lips working down there, just below my waist, but I can't hear what they say.
In the morning, I always escort Ned to the fifth floor cafeteria, where he meets his classmates. The place is filled with kids from all grades, and sounds like a floor of giant crazy birds. Sometimes Ned brightens up and adds to the din himself. Most mornings, not. Ned leans against my leg in the cafeteria. As October passes, he more quickly spots a friend or two in the morning. "Ned!" a kid will say, and my son's attention pulls from me like a boat leaving a pier. Still, we're getting near Halloween and this doesn't happen as often as I'd like. What gives? Ned's a nice kid: When the lunchroom cook retired a few weeks ago, Ned wrote him a card and said he was going to miss him very much.
I did the math concerning my own ages in grades -- which I found oddly challenging despite having paid attention during most of those grades -- and discovered that lo, Ned is a whisker young for first grade. How'd that happen? In his class, the first and second graders are together. Ned will have a good time next year, helping the new first graders. "Sometimes, Ned, you have to go through something hard to get to something good," I tell him.
Maybe I've forgotten my own first grade, though one night when Ned comes home and says somebody called him a crybaby in class, Jill asks me if I ever cried in school and I say yes. I was in first grade, in fact, taking some Johnson-era standardized test when one of the questions came accompanied with a drawing of a little squirrel. We had a squirrel living in our backyard then, and all the missing of that squirrel and the missing of my mum and home welled up my throat and, for a few moments, out my eyes. Was that in second grade, though? Would it hearten or discourage Ned right now to know that I might have been older than he is? I don't remember if it was first or second, but I do remember that I didn't cry in school again until college.
So far he has come home knowing how to read and add a little and how to wrap an egg so he can drop it and not have it break, and he has learned about slavery and about the connection between Teddy Bears and Teddy Roosevelt.
"Do bullies get kidnapped?" Ned asks on the bus ride home.
I beg your pardon?
"In fourth grade, do bullies get kidnapped and, what's the word, exchanged?"
You mean bullies like your little stuffed bull? Is someone trying to take it away from you?
"No! Not the toys! Bullies."
What do you mean, Ned?
"James called Terry a bad name in school today. So James passed Terry a note later saying he was sorry. Vicki got it and read it out loud, and said bullies in fourth grade get exchanged."
This is the kind of storytelling acumen on which I'm relying to build an opinion about Ned's school experience. I often wonder which of us is in first grade. (October 2006)
Jill and I and Alex's 3rd-grade teacher Jane walk into her classroom at about 8 a.m. on Monday morning. The place feels like a greenhouse, and Jane turns down the heat. I turn to Jill. "Now we know why he doesn't want to wear a long-sleeve shirt in the mornings," I say.
We've come to this room again -- while Alex is over in the cafeteria this morning, probably refusing to eat his Cheerios -- to plumb more of what happens here, in Alex's other life. Some things are the same as our last visit some eight months ago, such as the students' job assignment badges Velcroed to the wall. But Jane has also moved a lot around.
For example, lining one wall are six cubicles fashioned from bookcases and desks. Alex's cubicle is on the end; it's the only one with a footrest under the desk, because Alex is the smallest in his class of six autistic boys. The homework of the class is on another wall; Alex's handwriting is by far the shakiest.
Jane explains that yes, this cubicle set-up is new this year, a private space where the work is taken from the left and gets sorted by the students, when finished, to the right. "Not that I'm trying to turn them into little office workers," Jane says. I like Jane. She's no-nonsense without losing her sense of fun, rebellious without being too far out there.
We've come to ask her questions. What's Alex actually eat in school all day? How can we work with him better at home? How does Jane know he's beginning to read?
Are we correct in how we're teaching him how to write? Well, for starters, we use markers at home, and Jane calls them "cheating, because they make the stroke evenly for you." We should let Alex use short pencils, with a grip. "He holds the pencil too far up," says Jill. "Yeah," I add, "and sometimes he holds it with all four fingers on the outside like this-" I demonstrate. I also note that I hold his hand from the right side when writing with him at home, and now realize that that conflicts with how he does things in his cubicle. But I'm not going to change; I don't want Alex to think things are the same all over.
Jill and I confirm those stories that usually involve unbelievable amounts of speech from Alex, stories that have come home in his notebook. Like the time he wanted flag duty instead of having to sweep the classroom, so he took the badge for Sweeping to the boy who held the badge for Flag, and stood in front of the boy and said, "Flag. Flag." Jane also confirms that a few weeks ago Alex did get into a shouting match with another boy over a toy; Jane had to step between them. "Did Alex really say what you wrote he said?" I asked.
"Yes! He said, 'James very bad, very bad! You should excuse yourself, James!'" As Jane confirms this, Jill gives me a sideways look; at first I think that look is pure skepticism, but then I realize it means, "Claims he can't talk. See what he's been putting over on us?!" Jill's also been wanting to know where Alex will go to school next year ("Right here!"), and that spills into talk of future schools, including all the way to junior high. Jane tells of parents at certain schools who are quite happy, and she also tells of a school where a teacher tied an autistic child to her chair.
I tell Jane about Alex's Thanksgiving bookcase crash, and that we were worried not so much because he tipped over a bookcase as because he didn't seem at all ashamed afterward. Jane responds by flipping the big artwork pad on an easel to reveal, beneath, rung-like bars that yes, Alex sure can climb.
"What a memory he has!" Jane says. "He's got Tom and Pippo memorized. The big thing is, I have to try to get him to focus!"
I glance out the door. Here he comes. For five years we've been told that for Alex to see us in his classroom would distract him too much. But he comes in now and dashes right past me, his eyes at about the level of the lowest button on my pea coat, and he goes to stand at the spot of the floor where he last saw the class Christmas tree on Friday. He stares up at where the tree is now, on the windowsill. "Alex, I had to move it up there," Jane explains. He turns around with his coat in one hand and his backpack in another and spots Jill's face, then mine.
He pauses; he doesn't smile, at least not immediately, nor does he stop his classroom business. He hangs up his coat, and in general does all the stuff you do when your parents show up unannounced at your office. While moving to morning circle and the Pledge of Allegiance, he gives us a couple of sidelong looks and a small smile or two ("See what he's been putting over on us?!"). Then he starts to climb the rungs of the easel to get to the flag.
"The Star-Spangled Banner" is Alex's baby, Jane has informed us. He holds the pocketbook-sized flag in front of himself as Jane stands to his right. I can see her whisper "Stand up, boys," to Alex. "Stand up boys," he says, making the side of his mouth into a comma shape, instructing his classmates in a small voice. They stand. He conducts the Pledge with Jane's help, and he sings the National Anthem probably as clearly as most adults could. Beside me, across the room, Jill sings softly along with him. Since I can't sing, I try not to cry. (December 2006)
"Read the street, hairball! Read the street!" -- Det. Mick Belker on "Hill Street Blues"
"Did I tell you Alex spells words?" reads the note from Alex's teacher Jane. She says he has learned to spell a new word! He has never spelled it before that I know of, and he spelled it for all of them in his class, plus perhaps a few Child Protection Agency officials. The word is "LIQUORS."
"I don't know where he sees that word!" Jane adds. "Not here!" (After "here," she pens a little smiley face.) "Maybe he has a view of the sign when he goes on home on the bus." Yeah, maybe. I just want to say that with Alex's predilection to bolt and run almost uncontrollable, the last place I'd take him into would be a store stacked with towers of expensive glass bottles.
But this is great news about a tough word (it even has a q in it!). He already spells "pizza," another common storefront word. "Pizza is his favorite word," Jane says. In fact, Alex spotted the word "pizza" in a detailed black-and-white streetscape we have hanging near the doorway to our kitchen. He stood up on the folding ladder, studied the photo for several minutes, and then said, "Pizza, pizza!" He says it; he just won't eat it, except the cheese. With a fork, which is also encouraging.
I have little New York boys. They hail cabs and eat better in restaurants than at home. Ned sees the homeless, and I hope thinks that there's a way to help these people help themselves. The other day Ned and I were sledding in Central Park and he went down by himself and was slowed on a patch of exposed earth. "I don't know what went wrong, dad," he kept saying as he trudged back up the hill, "I just don't know what in hell went wrong!"
It's hard to know what Alex knows. He has a few gestures in response to language - "Hug for daddy?" gets me either a hard squeeze of the neck or a frantic shaking of his head and giggles - but single words are about all we have to tell us what Alex sees and recognizes. Crackers, chicken, Elmo. Lately the word he uses as his purest expression of annoyance is "Ned." Sentences are developing slowly.
It's vital that Alex learn to read the street, as he must travel them on foot and travel them with autism. The big city is a big, dangerous place. He halts well enough and raises his arms curbside at my call of "Alex! Street! Hand!" I have also pointed out the little white guy on the lamppost who tells us when it's time to walk (it might be easier to teach Alex the word "walk," but "walk" doesn't appear on pedestrian crossing signals anymore, so apparently it isn't easy to teach a word the length of "walk" to many adults living in New York City). I have also pointed out the Push/In and Pull/Out doors at the drugstore. He's having a harder time with these, though once in the drugstore, even if it's for the first time, he sprints right to the rack of $5 toy cars.
"Do you have a view of the liquor store from your house?" Jane asks. No we don't, but let's move on now to teaching Alex to spell "Chardonnay" (Jill recommends "Shiraz"), or even whole New York phrases like "Off-Track Betting" or "Private Booths Available." What in God's name must they think of his father in Alex's school, where, they add, he has begun to eat the pizza? (April 2007)
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