Getting Over It; Taking His Medicine; Finding His Thrill; Binkie-dom; The Ordinary Closet; Working Day; Medicine Man; Seized; Diapers Adieu!; Another Day of Days; Trifecta; White Matters; 'Vacation'
Alex seemed better over the weekend. Last Wednesday and Thursday the symptoms had been nagging but at least familiar: Ned brings a cold into the house on Tuesday, Alex is lethargic and a little feverish by Wednesday afternoon. Beyond that, Alex can't tell us how he feels.
This is the second such spell for Alex in as many months. Jill thinks he might need antibiotics. Night by night through the end of the week, as evenings dissolve into certainty that Alex won't be going to school again the next day, I recall that lately Alex has been the first one back into the stroller on the playground. Alex has been the one who bounces around less. Alex is the one who seems to get tired first. Jill talks about taking him to the doctor, even though without fail Alex seems to get sickest after visiting the doctor. I say we have no symptoms.
"We do have a symptom," Jill says. "We have fatigue. You can be tired, but in a few hours you get over it. We have fatigue." He lies on his side, with his T-shirt off, on the cushions on the living room floor, one eye upraised to the TV and Elmo.
He stays home Thursday; he stays home Friday, though late that afternoon he bolts from the playground near our building and makes Jill chase him to the edge of the Harlem Meer, into which he seems intent on jumping. On Saturday, he scrambles up most of the biggest rocks in Central Park, Ned at his heels.
"I'm sick, too," Ned announces after brushing his teeth Saturday night. He gives a fake cough. Ned will do anything to get cough syrup.
On Sunday, Alex's low fever returns. He nibbles his chicken, munches pretzels. He takes an hour-long nap -- strange for him -- but later stays up until past 10, which seems normal for a kid who's usually asleep by 9 p.m. but who'd had an hour-long nap. Then he seems to come back. At least no antibiotics this time, I think on Monday morning. At least not this time.
My phone rings about 3 p.m. on Monday. "We've got trouble," says Jill, on the other end. "Alex's teacher called. "She says Alex slept in school all day, fell asleep on the bus, and threw up in school. They say there's a virus going around. I just don't know. He wanted to get on the school bus this morning."
I tell Howard, my boss. "Sometimes when you exercise hard when you're just getting over something, it can cause a relapse," he says.
"I like that," says Jill, when I pass it on. "I like that a lot. It's a thoughtful thing to say."
We keep Alex home on Tuesday. He seems perky, so I take him for a walk in the morning. He keeps cutting in front of me and saying, "Shoulder, shoulder." He wants to ride on my shoulders, instead of walk. We take a bus ride to midtown. He asks for peanut butter granola bars. I don't have any; I can't find any in stores. Then we pass a McDonald's and Alex bolts for it. "Alex, they're not serving chicken yet," I warn him. He scampers to the counter. I ask if he wants hash browns. "Hash browns! Hash browns!" he says. When they come, he pitches a McNugget-withdrawal fit. We finally find peanut-butter granola in a drugstore, where he wants the pretzels and cookies. Not too sick, I guess, but cranky, and somehow not himself.
Yet he's up that evening, waving to me from the living room while I bathe Ned in the bathroom. Soon after, he's scrambling up the entertainment unit toward the VCR while we all try to watch "The Simpsons." He tries to pop in Elmo or "There Goes a Police Car." How can a sick kid move that fast and that often?
He goes back to school on Wednesday. I check in with Alex's teacher, ask her if he's having any problem. "Yeah-" she begins, chilling me with the notion that I've actually asked about something that's been on her mind. "-he was a little slow this morning, not quite himself. Then in the afternoon he perked right up!" Ah. At least not this time. (July 2004)
Alex got an ingrown toenail -- we don't have any idea, either -- and the doctor prescribed orange liquid antibiotic. It was thick, and Jill said it tasted like a Creamcicle. (Some parents make a practice of tasting everything that goes into their kids' mouths. I'm afraid I stopped at Pediasure.)
We started what promised to be another endless 10-day dosage by giving him the stuff in the mornings, and just before he brushed his teeth at night, half a teaspoon measured out into a little metal cup (spoons and Alex and medicine is a combination that's a ways off). We kicked off by giving it to him in the bathtub, having had a lot of experience trying to get liquid medicine into Alex and a nearly equal amount of experience cleaning it up afterward. To liquid medicines Alex tends to have the same reaction as to exotic foods such as mashed potatoes: a flailing stiff-arm with palm out and angry, a tornado-twisting head and explanations of "NO NO NO!". Perhaps he does it test the power of our Shout to get out the drizzles of grape purple and cherry red down the front of his T shirt.
Our bathtub worked with the orange stuff, however, smoothly enough to soon warrant moving Alex to my knee as I sat on the bathroom's most convenient seat. Just so he knew what I was sitting there for: "Alex, time for medicine."
I'd set him down and show him the metal cup, hoping he'd take it, theory being that maybe control of the situation would get him to lower his hands. His hands were clamped like cement over his lips.
"C'mon, Alex, this tastes good."
Taste schmaste. I get the feeling he's going through all this merely for principle, giggling and wiggling and using his hands the way a hockey goalie uses his mask. I hold Alex's arms down with one hand and, wrapping my fingers around his forehead, tip his face back. Jill leans in and squeezes his cheeks to make his lips form a little "O," and she holds the cup to his mouth. First few times we try this, a trickle of the stuff oozes out around his lips, and he coughs once or twice.
"The doctor said it doesn't matter if he gets every bit of a dose," says Jill. "I liked that doctor."
Alex has a "mouth" thing. For worrisome months he'd eat nothing unless it crunched. Then he accepted chicken nuggets, then a long while later pizza cheese, and now he's even known to knock down an occasional yogurt. I think his mouth thing has something to do with the medicine aversion, and doctors have been sending medicines Alex's way for most of his life. First the stuff flowed into him in tubes. A few times while he was in pre-school, we had to squirt medicine into his mouth with a syringe - an efficient enough process, but it reminded me of medicating a cat. Pills were a joke: We could get the first one down Alex, maybe a second. By the third he'd start pinwheeling when he spied the prescription bottle halfway across the room. For months now, we've lived with spoons and metal cubs, and stains on his T shirts.
Then, slowly with this Creamcicle stuff, Alex's resistance melts. It continues to take both me and Jill; he still covers his mouth with his hands. But it's as much to stifle uncontrolled giggles as it is to shield himself from some oral Creamcicle assault. We still have to hold his hands down; but when the metal cup touches his lips, he actually seems to begin to sip.
"High five on the medicine!" we cry, and he slaps our palms.
The most severe test comes one evening when I'm alone with the boys. Alex had a fit during dinner over touching the kitchen cabinet lights - I don't have any idea, either - and by the time toothbrushing came around, I was in no mood.
"Alex, put your hands down!" I commanded. He did. They started to come up again as the cup neared his mouth. "Put your hands down and drink this!" I gave him a taste, then waited. Then he took the cup, and drank.
High five. "This is a breakthrough!" exclaimed Jill. "I'm gonna buy him a Creamcicle!" (August 2004)
We leave the open clear plastic carton of Jersey blueberries on the kitchen counter. We can leave anything on our counter: Ned isn't tall enough to reach much (though he is learning to scale the handles of the kitchen drawers like the rungs of a ladder), and after just a year Toast doesn't know us well enough to jump onto the counters, even for salmon. We leave the blueberries there.
I come in a few minutes later and find Alex holding a few of the berries. He often holds fruit. He'll carry a banana around the house for several minutes, though never try to peel it. He will try to peel a white onion. Sometime he likes to walk around with a lemon, and press it against his lips while standing in front of a mirror. But there he is with blueberries. We leave him alone, the way you'd ignore somebody who may just be starting to do something you really want them to do.
Alex squishes the berries against his teeth. He smears the juice across his lips, and giggles. I see the jaw working. He smears more mashed berry on the tiles of the kitchen floor.
"Look who's eating blueberries," Jill says softly.
This thrill marks a milestone in our six-year campaign to get Alex to eat. The latest accomplishments in the campaign included yogurt and ice cream, but those were months ago. At school, they say he's eating hamburger, though we haven't seen much of that. At home he is putting away protein bars for dessert, but he thinks these are chocolate so I'm not sure they really count. Foods have fallen away, too; he no longer eats bacon. Some foods Alex would scarf we blockade from the house, such as the crunchy crap he'd still live on given half a chance. Corn bugles (which he once called "boo-guls) are now probably just a salty memory for him, and Jill forbids saltines ("crack-KERS!") in part because they're empty calories for Alex and in part because their many crumbs aren't empty calories for bugs. After he goes to bed, I eat his Chee-tos ("Cheeze DOOO-DULS!"). (Chee-tos were in fact one of his first foods: a feeding therapist recommended them because their bright orange made it easier for us to tell how he was chewing and swallowing.)
A few nights later, Jill brings home champagne grapes. These are like regular purple grapes except they're about the size of, luckily, blueberries. We give a few to Alex in a plastic dish. "Alex, grapes! Mmmmm." He prowls with the grapes in front of an "Elmo." Again with the mashing on the lips, again with the jaw. Soon, the skin of one grape dangles off his lip; another is smeared on the shoulder of his T shirt. Later I find several skins of tiny grapes on the floor in front of the TV, like the scene of a tiny grape atrocity.
Alex's hands and fingers shine. "Time to wash your face, Alex." Most people wash their hands before they eat. We'll take what we can get.
A few night later, Jill makes hot dogs and beans for dinner. Jill fries eight dogs. I put two on her plate and two on mine, and give one to Ned. That leaves seconds for me and Jill with one dog to spare, and I cut it up for Alex. "Wait wait wait!" Jill says. She disappears into the living room and I hear her rummaging in the boys' toy fridge. She comes back with a toy hot dog in a bun, and places it on Alex's plate beside the cut-up real dog.
Meal-time toys are common with Alex. Before his almost nightly dinner of chicken nuggets, he always hauls out his box of plastic farm animals and arranges the chickens around his dish. Which is a bit like inviting plastic pigs to sit down to bacon and eggs.
"Who wouldn't love a hot dog!?" Jill demands. She sits with him over the dog, and he eats it. At first it's like berries - smeared on his lips. But he starts chewing, and chewing, and chewing, then laughing. The dog disappears. I grab one of mine off my plate (there's more in the kitchen, after all) and slice it swiftly. He eats it.
"Hot dog!" he giggles around a mouthful of all-beef and beef by-products. He eats three dogs. I get none, but if he'll eat hot dogs, I'll give him hot dogs. Maybe, at last, he's moving steadily toward normal food.
Not so normal, I guess, is the lemon he sucks on a few nights later. I'm in the kitchen with him, and report this to Jill. "Put some sugar on a slice of lemon for him right now!" he says. I do, and taste it myself before i hand it to him. Delightful! I put the sugared slice of lemon in his bowl and off he goes. I wash a few dishes, careful to leave him alone. He returns in a minute, casts the untouched sugared lemon slice on the counter, grabs the slice of lemon that isn't sugared, and runs off.
Afterward: Two nights ago, Alex ate the beets out of Ned's soup. Last night, he ate two and a half little hamburgers, though not the bun. Watching his carbs. (October 2004)
At 7:05 p.m., Alex spills a 60-piece jigsaw puzzle across his bedroom floor. I tell him to pick all the pieces up, please.
"Binkie!" he barks.
"Alex," I reply, "you're miles right now from binkie-dom, pal!"
His binkies ("pacifiers," as I once knew them) sit in a nut can on the shelf of the boys' room. Or maybe a cocoa can -- I can't tell, as somebody ripped the label off weeks ago. Maybe me, out of anger in the middle of the night that my nearly-seven-year-old can't go back to sleep without a binkie, and anger that through the evening he had scattered them around the house as if laying out a scavenger hunt.
Alex has four binkies. (Ned, incidentally, shoves one in his mouth when he sees Alex with one, and when he thinks it will bother me. Ned looks ridiculous with a binkie. There, I said it, and I don't think that one day he'll hate me for saying it.) Alex has two "old binkies," one green and one yellow, and two "new," yellow and blue. The shields on the new binkies -- I guess you call them shields; I really didn't think I'd have to be thinking about binkies at my age -- have holes in them, like masks for tiny hockey goalies. Alex won't have anything to do with the new binkies. But after especially trying schooldays, Alex will by 7:30 fly into the living room from his bedroom, a binkie in his face and fondling a soft piece of cloth, reminding me of Churchill conducting a last bit of war business before bed in a robe and with a cigar. Alex is tactile, and is another term I remember from deep in doctor days: "Orally centered."
Sometimes when we're settling the boys for bed on the other side of 8:30, Alex gnaws on his binkie, snapping it like gum. "Alex, stop chewing or no binkie. Stop chewing or no binkie. No, you sit here and read with me. Ned, take that out of your mouth. You look silly, Ned. I'm sorry, but there, I said it ..."
"Binkie!" says Alex. "Go to bed! Binkie!"
I recently told someone that there are 30-year-old autistic kids who still use binkies. "That's because their parents let them!" she replied.
We do. I do anyway, because life with Alex is a list of things to teach him, a series of fronts: advancing on some, holding ground on others. He is solidly into his schooling, for instance, at least for now and apparently for the next year or two. Alex's teacher takes her class on as many as a half-dozen field trips a month, which has greatly helped him learn how to hold a hand and walk semi-civilized down the sidewalk. He attends a rec program on Saturdays and on school breaks. He often sits quietly in restaurants now (especially Burger King), and I'd sure rather fly cross-country with Alex than with Ned. Alex has learned how to ride on a school bus.
For dinner now, we can offer Alex chicken nuggets or a hot dog (no bun); though dessert will likely be a chocolate protein bar, it could also be vanilla ice cream or yogurt. He likes to zip up all jackets now, including Ned's. He can slip on his own socks and shoes. He's intensely curious about buttons and belts. When I have the boys for an outing, we climb rocks in Central Park. We haven't needed a playground in months, and a stroller in many months more than that. On a Cape Cod trail in early September, we discovered that Alex may dart ahead, but he will stop if told, "Alex, wait for Ned/mommy/daddy!"
Jill has toilet training on the list for this Christmas break. I think we have a 50/50 chance of succeeding.
On no front are we losing ground. I'm not happy Alex still needs a binkie, any more than I'm happy he still needs a diaper, or that already I've had a hundred, a thousand times the number of conversations with Ned that I've had, or will likely have anytime soon, with Alex.
"Go to bed! Binkie!"
Enjoy that cigar while you can, Sir Winston. Binkies are on the list, and a long time before you're 30. (December 2004)
Jill called yesterday afternoon. "Well," she said, "the oxygen's gone."
Ah. She'd planned to have our old medical-supply company come to our apartment and fish Alex's now-dusty oxygen tanks and pulse-oximeter from our closets. "We had one of the those big e-tanks," Jill said, "in the back of the front closet. Did you know that? Amazing they expected me to schlep around with that."
I remember they did. I remember that at one time in our past, healthcare professionals expected my wife to lug a scuba tank around to get groceries, fetch mail, and otherwise live the life of a new mother. "I think if you're going to inflict this on someone, you should know the consequences and long-term outcomes," Jill said.
She also expressed regret about finally losing the pulse-ox. "Trouble is, it didn't take up that much room. And I guess we'll never get to use it at parties." Back when this stuff was front-and-center in our lives, when it was the wail of pulse-ox and not the touch of our sons that woke us three times a night, an e-mail friend suggested using the pulse-oximeter at parties, to measure the blood-oxygenation of guests. It would have been a hoot, no doubt. Just Sunday night, my hands got dusty moving the pulse-ox to the back of the upper shelf in Alex's closet, to make way for "big boy" books - science, arithmetic, social studies - that people had given us and which I sure we'll be using someday soon.
I remember the e-tank, and the b-tanks, and the m-tank; I used one last summer to blow up a beach ball. I remember the pulse-ox and all its monitors that used to erupt every time the two-year-old Alex wiggled his toe. But earlier today I couldn't remember who our medical suppliers were, or even know for certain if they were still in business.
"Alex's closet looks ordinary now," Jill said, and hung up.
We've cleaned out our closets before. We've sent to the basement or to their next owners more prosaic baby- and toddlerhood stuff. The bouncy seat went first, I think, way back in Queens. Alex bobbed in it during his first, ultimately tragic week home after the NICU. Ned's crib we sold to a woman who handled public relations for Times Square, and in exchange she brought us a bag of weird-flavor Kisses from the Hershey's store. The fold-up crib went sometime later -- I think we sold it online, that new parents' extravaganza for used stuff -- and I remember thinking how we were really on our way then, with a boy in a real bed. The panzer-sized double strollers I don't miss, having shoved two of those things across upper Manhattan on more than one hot afternoon.
Of course other stuff has come into our closets. Grandpa has one carseat, but we have the other, behind the carton of wine and under the folded pack-n-roll. We still have a single stroller slung in my closet across the coat bar, but I don't know why. It's all I can do to keep up with the boys as they scale the rocks of Central Park now.
Medical gear is at a minimum. We still have the shoebox-sized nebulizer for when Alex gets a cold, but we may well never use it again: Jill recently bought a neb machine that's about the size and weight of a Walkman and that dispenses Alex's inhalant in about a tenth of the time of the old machine. Somewhere I have a knotted plastic grocery bag of cannulas, pulse-ox monitors, and oxygen tubing that I planned to digitally photograph for use on the cover of my book, but I never got around to it. I think the cat has dragged the bag off someplace.
As Alex and Ned get older, I understand a whisker more about why my mother treated me like a little kid until long after I was shaving and paying taxes: the years went by too fast for her, just like they have for me. Still fresh is the memory, the chapter, of when laying hands on Alex's cannulas constituted an emergency that turned my bowels cold. It's a long process to move into the new chapter when medical stuff won't need to be around.
New chapters. Last night, I thought how we may finally be starting one.
This morning, Alex had a seizure. (January 2005)
(Jill again contributes this week's essay.)
Here’s something I didn’t know: when you call an ambulance for your child in New York City, they send the police.
It’s 6 am or so, and we’ve been up since about 5 with Alex, who is not well, but until now has followed his usual pattern of being reasonably perky, jumping into bed with us, coughing loudly, and expelling some mucus that he’s swallowed. Expelling mucus really means gagging and vomiting, since he swallows it, but it’s all mucus. For about half an hour I console myself as I often do with the thought that we’ll eventually all go back to sleep before the alarm goes off at 6:30.
Just as I’m feeling calm and reassured that it is just the usual cough-gag-spit routine, he does something he has only done once before: stops gagging, but becomes unresponsive and vacant. He is unable to walk. The last time he did this, over a year ago, I thought he was choking on something. I swept his mouth with my finger, accidentally triggering his gag reflex and making him vomit. The minute he did, he came back, rubbing my hand, eyes closed. He slept peacefully after that.
This time he is silent. While Jeff holds him I try slipping my fingers in his mouth but his teeth are lightly but insistently closed. A few minutes later his arm starts to twitch. We call his doctor and hit the button for the emergency pickup and leave an urgent message for a doctor to call back. Now all his limbs are twitching, and we stare at each other and call 911.
I make the call. While I’m explaining Alex’s situation to the man who answers the phone, I’m aware of how calm I am. While we’re talking call waiting beeps. It’s an associate of Alex’s doctor, who tells us we should definitely bring Alex to the ER. I think we tell him we’ll go to Columbia, and he says he’ll tell them to expect us. I think. Things happen, and in five seconds they’re forgotten as we are swept into more things, much more than usually happens before we’ve had coffee.
Jeff is wearing sweat pants and a T-shirt, and I’m in whatever I was sleeping in, so I throw on clothes and decide to go down to the lobby so the EMT’s won’t have to stop at the front desk.
The elevator doors are just opening on the ground floor when I see the flashing lights and the approach of the second vehicle, a police car. That’s odd, I think to myself, maybe they have the wrong address, but keep walking outside anyway to find the ambulance crew. I greet everyone -- two EMT’s, three cops -- and they follow me in. One of the cops is a woman, and she’s the one who stands next to me and asks me what’s been going. Does my son have any unusual history? I pause, realize a pause looks suspicious, and tell her I’m trying to think how to explain this concisely. Realize that telling her I’m trying to think sounds suspicious. Tell her my son has a complicated medical history, and that he’s had some breathing problems, but nothing like this, which we think is a seizure.
We come in – six adults – and I wish I’d spent more time cleaning up. Alex is quiet now and the twitching and shaking (five minutes? ten?) has stopped. Jeff and the paramedics and I watch him sleeping. One muscle in his cheek is still jumping. They agree it looks like the aftermath of a seizure, and then one of them starts tossing around terms I know (grand mal) as well as some I don’t (Jacksonian). I’m floored. We’re well-versed in problems of the lung and the airway. We can banter about atelectesis and reactive airway disease but we didn’t expect to be learning new terms after six years.
Even though we’re 10 blocks from a hospital, I dread having to deal with doctors and staff who are condescending and unsympathetic. We ask if we can be taken to Columbia, where Alex spent five months, but the three of us were treated with kindness and respect, and the EMTs say they’ll take us wherever we want to go.
The view of streets at dawn, two days before Christmas, from the unexpected height of the back of the ambulance, makes everything look unfamiliar. Though I’m 15, 20, 30 blocks from home, I feel like I’m in a strange city. Alex sleeps.
When we get to the hospital, he wakes up briefly, which I think is a good sign, but he continues to be drowsy and cooperative as we meet nurses and doctors we’ll see just once.
First we see Kevin, a resident, who wants to know a lot of details. Where did the twitching first start? Left side? Right side? Did it stay on one side of the body, or move to both? Feeling stupidly unobservant (had I been more worried about getting dressed or making coffee or sticking a fork in the pot roast I’d made in slow cooker the night before than watching my son have a seizure?) I keep saying, “I think so, I’m not sure.” I seem to be saying “uh...” even more than usual. Kevin says, “That’s all right. People are going to ask you the same things over and over again. Don’t worry about not remembering everything.”
Dr. Teng is the attending. He wants to know if I need anything. Because he really seems to want me to want something I say I’d like some water, and he says, I’ll get you a cup of water!
As Alex wakes up a bit and starts to want to leave, Dr. Teng finds us a room with a TV. He has it turned on to the Disney channel, and Alex, who hates anything unfamiliar, cries and goes back to sleep. We’re in a much bigger cubicle now, practically a room, and I start craving sleep, or at least coffee. Jeff and I have talked by cell phone (how did we get through those months of hospitalization without a cell? Better yet, why did we?) and I estimate I have another 45 minutes before he arrives and I can go out for coffee.
Once Jeff arrives I can go to the bathroom and leave the hospital. Alex is glad to see him and continues to sleep on and off, in part, I think, because he’s had a seizure, and in part because life has suddenly become so strange that it’s wise to just sleep until things go back to usual.
Before I left home I put in contact lenses, but did not put on socks or stockings. Luckily it is unseasonably warm: low 50s. So when I go out for coffee from El Presidente (reliably fabulous) I do not freeze. Come back with coffees, two bacon and egg sandwiches covered with gooey cheese (ugh), which Jeff loves.
Our neuro consult takes place with two fellows. We estimate they were in their last year of medical school, possibly interning, the year Alex was born. They ask the questions we’ve been answering for six hours, then ask some general stuff about his development. “Does he go to any kind of school?” one of them wonders, hands apart, shrugging slightly at how improbable this seems. I look at her, amazed. Does she think we keep him chained to a bed all day? Or that no school exists that could teach my deranged, semi-verbal son?
“What do you think? Of course he goes to school.” I widen my eyes to the same degree as hers. Good, I’ve embarrassed them. They start fumbling for excuses. “Well, you’d be surprised,” they say. “We see all kinds.” “Yes, but look at us. Do we look like we don’t send our son to school?”
Alex will have a CT scan today, and they want him to come back for an MRI. “He’ll be sedated for that,” they assure us. “Even normal kids need sedation for an MRI.” I just can’t let this go, this “normal” comment, and I say, trying to smile pleasantly. I think I succeed in looking merely civil. “Just a tip,” I say. “We say ‘typical’ or typically developing.’”
Everyone always seems so official and important in a hospital, but it’s just their working day. All around you are not medical miracles or life-and-death struggles, but mundane events: prickly parents, patients with complications of diabetes and obesity, nurses on coffee breaks, the banal DNA of a weekday. We spend eight hours in the hospital and never get the overruns of an outbreak of hemorrhagic fevers or a devastating fire or train wreck. I overhear a cop on the phone in the adult emergency room, where we’re having Alex’s CT scan: “Can I use my husband’s employee ID number on the phone to get the employee discount? No? Oh.” She hangs up, disappointed. In the hall are several people on stretchers, waiting, dozing.
In the emergency room, we’re suddenly homeless. We have to take all our stuff from place to place, from cubicle to cubicle to CT scan area. We do ordinary things in odd places. In the bathroom I wash myself and change my underwear, which I’ve had the foresight to bring with me.
The CT technician is impassive, consents to letting me try to sing Alex to sleep for the CT scan. Ordinarily I don’t like anyone to hear me sing, but Alex has requested a song, so I sing the fairly creepy song “Down in the Valley” (valley so low... bend your head low, dear .... hear the wind blow). I might be alone in thinking this is being sung by a man in jail to the girl he murdered.
Finally, leaving CT scan I am actually WHEELING our stuff, which is now a pile of crap: two leather jackets, Alex’s sweatshirt, the NY Times, Jeff’s baseball cap and a precious Styrofoam cup from the kitchen area, Jeff’s bag, my purse, Alex’s bookbag) in a wheelchair. I’m like an old woman with a ratty old stroller or shopping cart.
The day is ordinary in many ways. We drink coffee, read the Times, chat about this and that. Now it hits us why the police would show up when you call 911 and say you need an ambulance for your child. Observations about hospital stuff can wait till later, and if Jeff sees the same things I see I won’t know about it until he writes something. (January 2005)
Alex used to sleep through the night. Ten, 11 hours, that boy down there, soft and calm, a painting, lips gently parted. Maybe he'd be restless if sick, but otherwise 10, 11 hours like a little log, allowing his parents plenty of time for an evening. That was the sweet age.
Now, even getting him to sleep is a challenge. Every night, it seems, every night. He kicks the wall for 10 minutes, then pitches side to side fast enough to make him dizzy, except it seems to just make him giggle harder and harder as the hands on the big clock over in the corner of their room creep past 9:15, 9:20, 9:25. I can envision Alex groggy over Elmo next morning, waiting for the school bus and the sunrise with rump high and head buried in the couch cushions. I can see the note home from school the next evening: "Alex hard a hard time settling down today..." Or worse, I will arrive at work - Jesus, how are you supposed to work when your 7-year-old is spinning like Linda Blair at almost 10 p.m.? - and find the red message light on, call Jill, and learn he'd puked on the bus on the way to school and Jill had to go get him. Lately too he's been falling asleep on the school bus home.
He bounces and bounces, pulling out his sheet and slamming his feet onto the wall. I grab him. "Stop it!" I shout. Ned looks on. Jill looks on. When I see Alex like this, it looks like every nightmare of a bad adulthood for Alex I've ever had, like every bad end I've envisioned for my own life.
"Jeff," says Jill, "take him into the bathroom and leave the light off."
That is new. I take a deep breath and take him by the hand - trying to not yank - and we head to the bathroom. I take him in and shut the door, bracing my foot against it so he can't open it. I shut the light off. He reaches up to turn it on. "No, Alex," I tell him. "We're leaving it off."
We give it a few minutes. I hold his hand and try to hug him so he won't careen into the bathtub and give this night a whole new dimension of Problem, but he goes stiff and arches his back against me. He doesn't want to be held. I keep a grip on his hand. We give it a few more minutes. Then I take him back to his bed. He seems calmer.
Alex goes still for a minute - out of the corner of my eye I see Ned quiet on Jill's lap, where she's trying to read to him, and I wonder in quick fear what in hell he'll make of all this some day - and as Alex revs up again I grab one of the scented candles we keep in the closet for evenings such as this, that are dribbling away. Alex smells it (cinnamon, I think) and holds it out to Jill. "Smell," he says, "smell." Then he throws it across the room.
"All right," I say to Jill. "Get the medicine."
"Medicine!?" says Ned, suddenly no mere accident witness. "Is Alex getting medicine!?" Ned adores medicine.
It isn't medicine. It's melatonin. "It won't hurt him," his pediatrician says. Jill's cousins, who also have an autistic son, swear by it.
"Melatonin is the all-natural nightcap," reads the opening paragraph at www.melatonin.com. It's secreted by the pineal gland, a pea-size structure at the center of the brain, as our eyes register the fall of darkness. At night, melatonin is produced to help our bodies regulate our sleep-wake cycles. The amount of it produced by our body seems to lessen as we get older. Scientists believe this may be why young people have less problem sleeping than older people."
Not around here, buddy. We keep two little metal cups in the bathroom, with a pulverized quarter tablet in one and a pulverized half tablet in the other, the way warships used to keep gradated sacks of gunpowder to throw cannonballs specific distances. "Give'im the whole three-quarters!" I tell Jill. Ned gets nothing except a request to put his head down and go to sleep.
Usually we mix it in a teaspoon of cough syrup; thank God that over the last half year Alex has gotten better at drinking medicine. But the stuff never dissolves completely, and Alex usually sticks his tongue out when he hits the grit in the bottom of the cup. Tonight, however, Jill tries something else new: dissolving the melatonin in warm water.
I'm not wild about this. I still call it "medicine," and even "a drug." About as accurate as I can be on this much sleep. But take it from somebody who's been hooked on his own sleeping pills, and who only lately kicked nasal spray at bedtime: you build up a resistance to this stuff. Besides, Jill tried the big M a few months ago, and found she couldn't stay asleep. We usually get about 90 minutes of Alex Asleep for every quarter tablet.
He drinks it. In 20 minutes, he's asleep. Ned soon follows. Then like cops reviewing the procedure on a call, Jill and I recount this latest bedtime, looking for improvements, praying to find the one thing that gets us back to the golden age. Praying even that he just sleeps until 6 a.m.
He wakes up at four. The whole house wakes up with him. I yell at Jill for no good reason. She crushes another quarter tablet. (March 2005)
Alex ricochets around this exam room just as he's ricocheted around a lot of exam rooms. He dumps all the little plastic animals from the bucket; he pries the cover off the radiator; he fiddles with the really expensive looking lamp. He breaks my clutch and bolts for the door, demanding to be let down the hall, where he spied a lot of cool toys when we got off the elevator a moment ago. He grabs the phone of the doctor, who has stepped out of the room. I move to stop him. Jill stops me. It's been so long, I forgot that the bigger pest your kid is, the faster you receive medical attention. The doctor returns and continues with the questions. Her questions probe various levels of our history with Alex. What was his birth weight? What was the pregnancy like? How long was in the second hospital? Is he on any medications now? How does he sleep? Does he have any vision issues or food allergies? Alex sails by me; he gets to the door handle crying, "Toy! Out the door!" I have a question: Why did I have to spend a weekend filling out that four-page neurology department questionnaire that asked all these same questions? I've forgotten a lot about doctors. This one finds it hard to believe we haven't brought Alex in before, but only a few nights ago did we sit down, Jill over a pad and me over a beer, and rake back over the times in the last two or three years when Alex might in fact have had a seizure.
There was that time in school, right after a nap. Those times on the bus. "Alex was having one of his moments," the matron said. That time during the bug movie. Our eyes grew wider over each memory as they added up. That nap. That coughing.
On our own little Day of Infamy, Alex crawled into our bed at maybe 5 on a morning last December, dozed off, then woke up coughing. I held him, and could feel him go gradually limp. His head locked to the right. His eyes seemed to see nothing. Jill and I checked all the signs of respiratory distress we've been trained -- maybe "conditioned" is a better word -- to check for: blue lips, blue fingernails, the deep dimple of retractions under the ribs as a former preemie tries to suck air. Nothing. Alex hung there like somebody we'd never known, and his arm began to jerk. I don't remember which arm started first, but the other soon followed, then the legs, like hiccups of all four limbs. Still no noise. Still his even breathing, still he didn't cling to me or sag off me. Just nothing, nothing we had learned to watch for. But he was not with us.
"Call an ambulance!" I told Jill. The ambulance crew and three cops showed up -- that happens when the call is "kid in distress," we later learned: one cop to hold the dad, one to hold the mom, one to rescue the kid. I trust that all this crew saw that morning was a careworn mom and dad wondering, without even the benefit of morning coffee yet, what new sluice run of healthcare they were about to descend.
Yes, always the same, we tell the doctor: About 10 minutes into sleep he wakes up coughing. Alex will keep coughing, and apparently strain to clear something from his throat as his eyes grow more and more blank, his head goes to the right, and he slips away. He usually barfs. One in October, the Bad One in December, another in February that Jill seemed to have headed off with a whiff off the nebulizer. In general, Jill is getting more and more what the business world calls "proactive" regarding seizures. These nights, for example, she keeps a clean towel and a basin right under Alex's bed.
Always vomiting? the doctor wants to know.
Yes. Always. Then he goes to sleep. Jill hates vomiting like I hate spiders.
So next we have an MRI. I had one once. I liked it: very relaxing if you have earplugs against the banging of the magnets, and if you keep your eyes closed and don't notice that the top of the MRI tube is about an inch in front of your nose. While I was in there I tried to not think of what my casket is going to feel like. Alex will be sedated for his MRI. We'll also have to spend a night in the hospital, where presumably after he falls asleep they'll paste pads to his head, and his brain will make little needles jump faster than mom and dad jumped for that ambulance in December. Jill and I haven't decided which of us will stay with him. I guess I'd like to, but he likes mommy singing him to sleep these days.
Jill thinks the tests will reveal nothing. She says the signs are all there that she read about -- the correct age, the sleep bringing it on -- for this to be only the last and more obvious of a stage that Alex has passed through. She's often right about these things. I cling to that. (March 2005)
Well, that headline may be premature. But when we bought a clip of pull-ups the other day, lugged them home, and kicked them under the diaper table, Ned wanted to root them out and put one on. "Don't do that, Ned," we said. "Those are expensive, and they're not for you!"
I promise, again, to go into limited detail over Alex's toilet training. I can't help thinking he's just going to hate me a few decades from now for putting down even this much. But the topic is gigantic in the world of an autistic younger, a milestone too important to gloss over in what claims to be a comprehensive record of a PDD kid's early life. So here we are, at the toilet bowl, where Alex braces his legs wide and grasps for something to hang on to (besides you know what). This all started one recent evening when I could see he was about to sprinkle the tub before a bath, and I took his hand and guided him to the bowl and said words to the effect of, as his Uncle Lee used to say to me, "Make it rain, doofus."
"Don't say that to Alex," Jill says.
Alex has earned the right to pee in peace. He has been in diapers since he was also in a clear plastic box in a hospital. Alex has been in diapers since Clinton was president and Elway was throwing touchdowns for the Denver Broncos. Godzilla and William Hurt's Lost in Space were two of the summer's blockbusters when Alex first wore a diaper. I was a lot more than seven years younger when Alex first wore a diaper. When Alex was in the NICU, Jill and I used to actually fight over who got to change his diapers (we still fight over it, but not in the same way). Changing his diapers then was tricky, too, wriggling your hands through the portholes of the plastic isolette, wrapping a diaper the size of the deck of playing cards around your preemie son who wasn't much bigger, and all the time trying to not get ensnared in one of the million goddamned tubes and wires.
Alex has worn diapers every day and night since. Until we got Medicaid to ship us diapers from some pharmacy in Brooklyn, we relied on the CVS house brand. We still do for overnight and prolonged wearing; they have Velcro and not sticky tabs, for starters. Then there's the capacity: I could pour half a beer into one and it wouldn't leak. Some overnights, it seems that Alex has been drinking beer, but we've never had an outright overspill. Alex has also gotten pretty good about telling us when he needs a diaper change, too, taking us by the hand and saying "Diaper! Diaper!" over and over while he leads us to the changing table. He starts to scale the table to the battered old changing mat that's disintegrating - we refuse to buy another one at this point - and almost squashes our cat Toast, who likes to nap on the mat.
"We've got to get you on the potty, Alex," I say.
Toilet training a boy like Alex, we've been told, means consistent repetition. Take him to the bowl a few times a day, even let him get wet to let him discover see he doesn't like it. Jill and I have been a little lax, but frankly when your younger boy needs a good kindergarten for next fall, and you wake up three days before Christmas to find your older son twitching in every limb, when the letters "MRI" are on your calendar just before "Passover," then maybe consistency isn't the outstanding quality of your life.
The pull-ups, which I'm considering wearing myself even though they're much more expensive than diapers, are festooned with Bear of "Bear in a Big Blue House" fame. We have one of those videos. It's the one about potty training. We stuff pull-ups into Alex's backpack for school - where's he's supposed to have a para detailed to help him with the bathroom, but where the Board of Education has so far been unable to find one. The school sends home a note requesting we send diapers anyway, as they take less time to change during the day. He's got a super teacher, so I'm guessing diapers won't hurt his toilet training at school.
"NOOOOO!" says Alex over and over the first time I try to slip one of the pull-ups on him. "NOOOOO!" On the second or third try, however, he lets me slip it on. He pulls on his pants, and runs off to start the next stage of his life. He will go through such stages until about the year 2048, when he will at last be allowed to read the following paragraph:
"I'm sorry, Alex. Now that you're a grown man, I hope you can forgive me for writing about this stuff. If you can't forgive me, just forget to change my diaper this afternoon." (April 2005)
"Thank you, God, for seeing me through this day of days." - Paratrooper on the evening of D-Day, "Band of Brothers"
Late tomorrow morning, about the time I'm in the office tucking into my ham on whole wheat, Alex will be tranquilized and sliding into an MRI machine so they can take a look at his head.
Jill and I, and Ned, for that matter, have become intimately acquainted with what appear to the symptoms of recent seizures in Alex: his coughing about 10 minutes after he goes to sleep, followed by a flexing of his tongue, glazed eyes, his head locking to the right, and the stumbling daze that only ends when he vomits and then goes to sleep.
It's enough to lock my heart to the right, too, and it must be serious indeed if it's sending us to new doctors, who want us to, in addition to the MRI, spend two days in the hospital for an electroencephalogram (EEG) to see what does happen to his brain as he falls asleep.
"You could kind of camp out with Ned for two days in a hospital," says Jill, "but you can't do that with Alex."
They started out talking about 24 hours in a hospital; now they've upped it to 48. I met a therapist at an autism conference a couple weeks ago and told her about Alex, and she referred to "the 48-hour EEG." So it's a procedure. Maybe it's unavoidable. Beyond that, maybe it even makes sense. It's just that this hospital doesn't know how I feel about procedures. "A 48-hour stay is also twice the money for them as a 24-hour stay," Jill points out. Adds my boss Howard, "You never know, when they want you to do something, how much of it is the doctor believing it's needed for your care, and how much is the hospital pushing to make money." On target yet again, Howard.
So, tomorrow. Alex is to have nebs tonight and tomorrow morning. Nothing to eat in the morning -- I thought the thinking had recently changed on that? -- and that should be fun, though his usual bowl of dry Cheerios or wheat crackers is hardly the Lumberjack Special. Jill is to get him there at 10:45. We expect, not to mention hope, to see nothing conclusive from the test. We then expect to told more things to do.
Instructions, cab rides, appointment times that fracture the day, triplicate forms assuring us that Alex Stimpson is probably covered for this procedure: All these weave a net that once ensnared us and our son. I will not be ensnared again. Twenty years ago, my big brother had a kidney problem and his doctor wanted to put him on three drugs. "You will put me on two, and decide which one not to give me," my brother told him. The doctor protested; my brother fired him. It's taken me two additional decades and two hospitals to hone such wisdom, but I have. I think.
On this Night of Nights, Alex's evening routine is, well, routine. By the hour of tooth brushing, Big Bird lies on his side in the living room. On the entertainment unit, the dolls of Charlie Brown and Linus are corralled in a fence from the play farm set. Alex is asleep by 9:05. "I hope tomorrow is a day we forget," I tell Jill. "We want it to be a day that produces nothing," she replies. I have night duty.
Alex wakes me at 2:30. I escort him back to his bed and give him melatonin. He still lies awake for two hours, and I don't try to force him to sleep, figuring that the longer he stays awake now, the longer he'll sleep in the morning, and the less time we'll have him begging verboten crackers and Cheerios before Jill has to take him to the hospital.
In the morning, he plays with Ned's farm set, and doesn't ask for food. That's weird for him. It's going to be an unseasonable 84 today, so I dress him in a T shirt and shorts, give him a neb, and go to work. I get there and see that I have a message. "Well," says Jill on the recording, "we're already off to a bad start. They called a few minutes ago and said, 'Where are you!?' I had to remind them our appointment isn't until 10:45, but I'm still going to take a cab there. And I have the cell phone."
An hour later, Jill calls again. "Alex is out," she says, referring to his being sedated, not to the procedure being finished. She reports that she's heading out for a coffee and will then return to wait. "Everyone here's been a doll," she says.
A while later, she calls again. "He's going to be out for another 30 minutes," she says. "I've already reached my 30 minutes for the day on the cell phone, so now it's very cheap to call you. Of course, I have nothing to say. Everybody here is so nice." In fact, Jill has had a long chat with a desk nurse, who said there were some hospitals she wouldn't even work in, let alone allow to care for her. "This is The Container Store of hospitals," Jill says. She loves The Container Store.
There was, apparently, some twitching as Alex was first coming out of the anesthesia. "The technician asked if that was normal," Jill says. How should we know? We don't give him anesthesia at home.
Another thing they gave him this day was oxygen in a cannula, which he took off. Jill reports he's satting at 96, 97, without the cannula, and I think how once sat numbers like that were just a dream. That was in another time and another hospital, and on another day.
(I call two days later for the MRI results. As of this writing, the doctor hasn't called me back.) (April 2005)
I'm in a house with some people I don't recognize, and we're hearing noises in the walls: banging, tapping, moaning. We call the police, and two cops show up. One of them, a blonde, goes through a metal trap door in the floor, and emerges a few moments later with a gigantic bag of soccer balls, child-sized basketballs, and other playground balls. The bag is far too fat to fit through the trap door, but she sails through and turns to us and says there was a little boy living "down there." I go down and find a little blond boy who has lined the walls of the dark basement with playground balls according to shape and size. He is autistic. I don't recognize him, but I think he's the little boy from the flashback sequences of the movie Proof, which had been on IFC that evening.
"Jeff," said Jill yesterday morning, "that's a creepy dream."
Yesterday afternoon, I was with Ned in a drugstore, looking for Benedryl. The kids had been sniffling; a good parent stays on top of this stuff. I was scanning the bottles when Ned asked, "Dad, is there something wrong with Alex's brain?"
"Yeah, Ned," I said, "maybe there is."
Yesterday I, Jill, Ned and Alex were supposed to meet Dear Reader Mary and her husband David for brunch. We were just leaving, we were in the pale sunshine in front of our building, when Alex began to make his now-familiar, wide-mouthed, soft retching. He began to stagger. Anybody who's been keeping up with our lives knows what these actions have come to mean, how quickly they scoop at what we think is our life, and can imagine how fast I sent Jill and Ned on their way and helped Alex back upstairs. By the door of our apartment, I was carrying him.
I put him on the couch. His eyes were dull and flickering, and soon they went to the right and stayed there. I scrambled to give him a neb -- we've had some luck fighting off these seizures with nebs - and he took it in good spirit. But soon he was still retching; I could see his little pink tongue flexing back and forth in there. His foot began to jimmy. Jill called for a report, and we were on the phone for perhaps two minutes when I said, "And here comes the vomit!"
Mary and other Dear Readers have all been here with Alex on the couch, doing this new nightmare thing, before. Different this time was the voice of Mary's husband David on the other end of the our cell phone, speaking from the restaurant where Jill had met them. David is a professor of psychology, with a background in neuropsychology. David knows epilepsy.
"Does this sound like epilepsy?" I asked.
"Yes," he said.
All I know about epilepsy is that the sidekick on "Horatio Hornblower" had it, and later that actor went on to be Captain Apollo on the new "Battlestar Galactica." So I have that. What I also had a shallow slick yellow pool in the bottom of my basin, and David telling me that epilepsy was caused by erratic bursts of electricity from the brain that cause all sorts of things to short-circuit in the body. As Alex fell deep asleep in the middle of this Sunday of pale sunshine, David told me about the drugs they have to treat epilepsy, and how some side effects can impact cognitive function. Alex doesn't have a lot of cognitive function to spare. I'm kind of running out of it, myself.
"What they'll do is put him on something for a few years, and if there comes a period where he hasn't had a seizure for a while, they will start to taper him off." The docs want us to go into the hospital for a 48-hour EEG check, which we've heard from experienced parents can be the wildest shot in the dark: it works if the kid conveniently has a seizure during the EEG. Otherwise, results sometimes don't show much except two parents wiped from trying to contain an autistic kid as he rips the brain monitors off his head.
"It's not uncommon," said David, "to start the course of medication if the symptoms are present but the EEG doesn't reveal anything." David had a soft voice, charming without being condescending. He reminded me of my engineer friend Tom D., who has often explained complex physics without making me feel dumb.
"I'm sorry that you guys have another layer of worry," Mary e-mailed me just now. "You've certainly had your share."
Prematurity, autism, and epilepsy. Before we went to bed last night, Jill called it "a trifecta." I call it another word or two that'll pop up in our dreams. (May 2005)
As the doctor clicks through the fuzzy black-and-white (and gray) images of Alex's brain, I think how these images resemble a cartoon book where you make the character move by flipping the pages.
The cartoon starts out with a shriveled face, like a dried-up jack o' lantern, with two bright white balls (Alex's eyes) on top. Then, as the doctor clicks through the pictures the MRI snapped two weeks ago, slice after slice of a little mind, the funny face starts to scowl, the cheeks puff out, and the eyes narrow to slits. The mouth disappears.
MRI machines take pictures in layers. I had an MRI once, for a herniated disk in my back, and I put in earplugs -- the magnetic field that creates the images makes the machine bang like crazy -- and shut my eyes and tried to doze off and forget that the roof of the tube was about three-quarters of an inch in front of my nose. You have to lie still. Needless to say, Alex was sedated for his MRI. Unlike an X ray machine, MRIs snap detailed photos of tissue, so they're perfect for looking at things like Alex's brain.
Alex's brain.
Click click click. Now the shriveled pumpkin looks more like an aerial view of a coastal marsh, again in black and white. There are ridges and bulges and gray stuff and white stuff. The doctor has told us she's seen nothing to get too alarmed about, although Alex does seem to be getting seizures more often, and she's alarmed about that. For some reason Jill and I can't fathom, Alex must be at this consultation, and as he jabs the doctor's phone until he gets the loud dial tone on the speaker, the tip of the doctor's pencil touches two white patches at the tip of some long black patches on one of the images.
I'm still screwing around with the pumpkin idea, and think how the black patches look like Halloween eyebrows, or maybe the Finger Lakes in upstate New York. But those white patches, they sure are white, white as I've ever seen.
The white patches are evidence of bleeding, the doctor says. "We were told there was never any kind of brain bleed," says Jill, her voice sounding far away and yet right there in the room with us all. Just like the NICU itself. Alex fiddles with the monitor controls of the doctor's computer. "That's okay," the doctor says, smiling at him. Evidence of some sort of trauma, she adds, probably lack of oxygen to the brain in the early stages of its development. The doctor says she sees a lot of this in former preemies.
Nonetheless, there is nothing solid to show why Alex is having seizures; this doctor is frank about the limits of this branch of medicine. She's also backed off that standard 48-hour stay for Alex in the hospital, to secure, maybe, an EEG. But true to what I've heard, this doc takes out her prescription pad without having had the EEG, on just the basis of Alex's increasing seizures. Especially on the basis of how long the latest seizures have lasted.
"I'm worried about his respiration. I'm worried about his heart if the seizures continue. I don't like to see 15-minute seizures," the doc says. I don't tell her that I still can't remember to watch the clock when Alex's episodes begin, that the twitching feet and arms and the dead brown eyes such in all my attention, soul and life. I don't tell her that 15 minutes might be a conservative estimate.
On the way home, I stop at a pharmacy, and they give me white tablets about the size of Doan's Pills. Remember those? For backache? You could lose a Doan's Pill between two air molecules. We have to cut these pills in half and give one to Alex nightly for a week. Then we start giving him a whole one. I think this will go on for a couple of years. We also have a prescription for a rectal syringe, to be inserted into Alex to arrest a seizure. That should be a high point in my fatherhood. I haven't picked up the syringe yet, but I think it's white. (June 2005)
Jill and I want to try this barbecue restaurant while "vacationing" on Cape Cod. There was a good and cheap children's menu, and last year on the Cape, Alex dove into the chicken nuggets on the children's menus.
This year, however, all he wanted all week were saltines, whole stacks of them, when he ate anything at all in restaurants. Sometimes he just emitted a hard, nail-like wail, and even smacked his head as other diners didn't look on. He did this as we waited for my brisket sandwich, Jill's smoked turkey, and Ned's fish and chips.
I took him by the hand and headed for the door ("About time..." I imagined the other diners muttering into their plates). Alex broke away and bolted for the kitchen. "Uh-oh! Uh-oh!" said one of the waitresses. I snagged Alex by the hand, and again we headed outside. Ned came, too, and we walked around the parking lot. Alex tugged and tugged, just as he did countless times during this stay on the Cape. If he got away, sometimes he ran, and sometimes he just laid down. Right now, somewhere in Provincetown, Mass., the staff of one ice cream store thinks I have a son who hugs and kisses sidewalks.
We got back inside the barbecue place; the food came, and Alex started in again. "You'll have to take him out this time," I told Jill.
Mild stuff compared with what I'd hissed at her in the Hyannis Mall the day before, when Alex kept bolting and yanking and yanking in my iron grip in the arcade, in the food court, in the men's room. "I can't do this again next year!" I told her.
Cape Cod is magic for Jill. She spent time here as a girl, and I have to admit that the sand and the timeless crashing surf can both lull and excite me, too, - but with Alex, it's just too much hard work.
A few weeks ago, Alex started an anti-seizure pill, Topamax. Half a pill in the morning and half a pill at night, pulverized in the bottom of a tiny metal cup and mixed with water. It seems to help Alex sleep, but it also seems to make him more irritable. (He bit Ned's hand hard in a backseat spat over a toy.) We think maybe the drug kills Alex's appetite, too. He screeched in the Provincetown Grand Union when Jill and I decided he shouldn't eat another whole box of saltines. Unfortunately, we reached this decision in the saltine aisle.
"Jeff," says Jill, "why did you have to stop the cart here!?"
Alex might just be expressing himself. He's aged another year, and maybe realized that he has a right to be a pushy son of a bitch just like everyone else. But he's also getting physically stronger, which means a harder tug on my arm, and louder screeches in restaurants. His head slapping seems at once better and worse than his slapping Ned's.
I tell Jill that must find a day camp for Alex if we return to the Cape, something for Alex to do to hedge against the seeming aimlessness of a shopping, lunching at roadside stands, and dropping by a beach. We must treat this need as we once treated his need for oxygen and the cannula.
"Don't underestimate the effect of weather on everyone's mood, especially yours," says Jill, for it was oppressively hot our first two days on the Cape, and downright cold on the third. Alex ran onto the beach that third day, calling "The water! The water!" He loves the beach: dashing into the sea, picking his way over the rocks, scrambling up the dunes on all fours and billowing sand behind like a little SUV. "The water! The water!" He kept tugging and squirming toward the beach behind the dock in Provincetown on one of the hot days. That night, his head was pressed into the pillow with the tired that comes from spraying sand, panting in salt air, and having the cold ocean wash over his legs.
But on that 55-degree third day, he slowed as he neared the surf, obviously expecting something would get hot and normal the closer he got to the water. He fired a wail over the Atlantic, then started crying, "The car! The car!"
On our last day, he slid off the bench in the pancake house. He doesn't eat pancakes, but he did stand up and rub out numbers on the menu that was written on the nearby erasable marker board, cutting the price of the Flapjack Special to 50 cents. Later, at Jill's suggestion, the waiter took the board down.
On our way out of town, we stopped for a last time at the beach. Alex was determined to dash in. He halted as the salty cream washed over his ankles. This was June after a chilly spring, and the ocean clung to its chill. Alex stared at his feet. Jill took a stick and with Alex wrote the alphabet in the sand; it killed a few moments. If only the language would emerge, the picture would be a lot different. Even after seven years, we're still kind of guessing with Alex. Jill thinks, as do I, that he has a lot of abilities that so far not even the oceans of the world can reach. (June 2005)
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