Eating Out

Alex waits patiently now, shops with his younger brother without bolting out the store fire exit, says “Thank you” in context. He also now decides when he wants to hit the hay, and puts himself to bed without always needing Jill to softly sing to him – although the first night home for the winter holidays he did get right in her face about 10 p.m. and bark, “Down in the Valley!!”

Eating’s the biggest change in him. Top of a lasagna. A Taco Bell chicken quesadilla. Swiping a slice of my steak in Applebee’s. In headphones and bobbing over music with a pizza slice drooping from his hand, the picture of almost every teen for the past 60 years.

Eating, to my mind, is almost as important as conversing when it comes to trying to get Alex into the rest of the world. A long struggle: From his earliest days we had to sneak calories into the few things he would eat – baby food laced with cream, for instance – and even bacon he’d often heave over the side of his high chair and proclaim, “Noooo. Noooo!” Eventually he did move on to chicken, yogurt, hot dogs, what we told ourselves constituted variety in his diet. To beloved junk food he gave cute names (“Bu-gulz” “pret-ZULS”).

But eating remained a wall between him and others, from finding the connection that happens when people sit down at a table and chew and swallow.

Even now, when since last fall a residential school has brought him a long long way, we still wonder about his eating. We email his feeding therapist before he comes home for the holidays: “What should we include or exclude in his diet when he's home? Is there anything we should send back with him to school? Frozen corn on the cob?”

Months ago, Jill got him to first eat corn on the cob; she’s usually the one who gets him to eat new stuff. On one of our recent visits to him at school, we arrived to find Alex at the dining table of his residence house, spooning applesauce. Beside the sauce on his tray sat an untouched sandwich. Jill got him to take a bite of it. I don’t know if he swallowed. He still doesn’t always swallow: First time they tried spinach pie at this school, when he arrived last fall, he put it in his mouth, strode to the nearest trashcan, opened his mouth and let the pie fall out.

Alex’s school incorporates food into learning, smoothly transforming a swallow at a dinner table into another lesson. They’re concerned about his weight loss in the weeks since he started school. A typical condition for new students, but they still welcome tips. “Oh he eats ice cream?” they say. (Not everyone does in this population.) Alex himself helps his feeding therapist figure out that he likes to prop select members of his plastic toy figure collection near his dinner plate, including his latest 6-inch WWE wrestlers to whom he recently started assigning the names of relatives. I like to think that in Alex’s eyes I’m Jack Swagger.

Foods Alex has eaten at school: roast chicken, grilled chicken, breaded chicken, spice-rubbed chicken (“… he’s liking lemon flavor ...”); muffins; Mexican chocolate cookies; Chex cereal; veggie stix (with and without applesauce). Maybe his new teachers and therapists make such progress because they haven’t known Alex for years and can work free of preconceptions. (I guess it also doesn’t hurt that their shift ends.).

“I show up for breakfast with him before he goes to school,” his feeding therapist says. “We sit right down.” Ready and pumped for work (…Nooooo…) by 7:30 every morning. “Alex is such a kind polite gentleman,” she adds, along with her tips:

- Make mealtimes fun! Instead of focusing on just the eating aspect of the meal you can make it enjoyable for Alex by playing. Kissing foods, building with toothpicks, making his figurines eat the food, letting him feed you guys. We’ve seen him really come to love his time playing with his foods.

- Provide a goodbye plate. He can put foods that he does not want on a goodbye plate. I have started having Alex kiss and lick foods goodbye to have him be more comfortable handling foods that may not be his favorite.

- Present a preferred food with a non-preferred food. On Thanksgiving make him something you know he’ll eat with something he isn’t so familiar with, like turkey.

- We found he was rushing through his meal to get to a preferred activity (typically the iPad). So maybe he can do a quick chore before he gets a preferred item.

Well, if anyone at school reads this, we tried over the holidays, we really sort of did. The structural integrity of Alex’s improved eating habits got their test, like a bridge in a high wind, and I don’t think the habits buckled. At Thanksgiving, he sat beside me through the whole meal, not touching the turkey but eating two ears of corn. At a family dinner on Christmas afternoon he sat at a table and twirled noodles up with a fork. With a fork!

I hope he’s on his way. I needed three days on a beach in the sun, not five days in slush kissing chicken and trying to get Grandpa (aka “Bad News” Barrett) to help Alex nibble a muffin. But I got the five days anyway, and was sort of very grateful.

 

Just Visiting

Alex came home for Thanksgiving from his new residential school. On that Tuesday I sat in the parking lot where I was to meet his van and wondered what he’d be like coming home for the first time since going to the school. Would he vault with joy at seeing me? Shake his head and say No! No! over the long weekend as time loomed to leave home again and head back to school?

He sure didn’t vault out of the van and bound into my arms that gray morning. He loped out with a beard on his chin and an iPad in his hand. Alex has a beard! He looks like a cross between Bob Denver in “Dobie Gillis” and Mr. Spock on the evil Enterprise. The beard probably weighs more than he did at birth.

“Welcome home, Alex! Welcome home!”

“Elevator,” he said. “iPad. Pret-zuls!” As I pulled into traffic with Alex a suddenly strange weight in the back seat, I wondered how we’d preserve the progress his feeding therapist had made away from junk food. But the five days passed well. When he first got home he did try to bury his emptied suitcase in the back of Jill’s closet.

Did he understand how long he was, and wasn’t, home for? He seemed to.

“Back to school in three days, Alex, back to camp. I mean school camp.”

Back to school in two days, Alex. Back to school tomorrow. “Tomorrow Davy,” he replies. Who’s Davy?

On our last morning, I took him out to buy a plastic animal (sort of becoming a ritual) and as we walked down the street when he did a double take at Christmas trees for sale on the sidewalk. “Christmas,” Alex said. “Christmas tree! Back to school.”

He went back. Our house got quiet again, half an empty nest. Over the following two weeks, before our first bona fide visit to his school, we called on a few evenings. They told us that Alex asked for us. Hope it wasn’t his way of saying, “When the hell are they coming to see me!?”

Tonight Jill dials; I’ll speak to him afterward. “Hello, Alex,” I hear her say. “Are you enjoying school? What are you having for dinner? Are you enjoying school?” When I get on the phone he says nothing; I ask the same questions about dinner and enjoyment, tell him we’re going to see him soon.

Then his residence manager gets on and tells me that Alex was about to hang up.

“You know Alex,” Jill says. “Not much for talking on the phone.”

Visits will be the last hurdle in this experiment, when we come to see Alex at his school but he doesn’t come home with us. We’ll start out in the morning without him and return home in the evening without him. We will pop in on someone who has no real idea that we’re coming. Will he plead or throw a fit? He hasn’t once in this whole process, but will he now?

When we arrive he’s at the kitchen table of his residence house, spooning applesauce, with a sandwich in front of him. A sandwich! A few years back, when we tried a sandwich he handed it right back to us and shook his head.

Alex looks up from over his plate and drinks us in, seems to slowly realize that his day is about to take a new direction. “We’re here to visit, Alex. We’ve come to visit you.” I put my arms around him and he presses quickly against my shoulder. He doesn’t seem to want to hug me as much as when he was younger. Is he pissed? Is he just typically 16? A little of both?

Alex hasn’t attended this school long; though the nearby countryside looks beautiful, tons of nature in prime ski country, but it’s just beasty cold today. Joined by Aunt Julie and Uncle Rob, Jill, Ned, Alex and I hit a nearby diner for lunch.

“Elevator?” Alex asks at the table.

“No, Alex. This is just a school visit.”

“A school visit,” he says. “School visit. Grandpa?”

“No. Aunt Julie and Uncle Rob came this time. Grandpa will come soon.”

“Grandpa wilca soon. Chicken? Chicken and French fries?” Chicken fingers aren’t on his diet; the school works hard to tie nutrition to health and social development. Alex doesn’t need long to realize that his feeding therapist isn’t in this diner. Jill pulls out a day planner and soon over the fries is showing Alex the coming month.

“We’ll be back to see you in two weeks,” I hear her say.

We eat. Alex sits pretty well – at Christmas he even ate pizza by the slice and pasta off a fork, so we sure don’t want to get too far from a feeding therapist. He gets up to bob and weave a little when the check comes. On the way out, Aunt Julie hands me the local parenting giveaway from the pile by the payphone and says, “Maybe this’ll show us something to do around here besides Walmart.”

Diner and shopping seem light enough fare on this first outing, like melon and seltzer on a hot day. We head to Walmart. In the store I watch Alex and Ned disappear with a cart: Ned pushes, Alex weaves alongside, two young men off to ravage retail. My boys used to bolt for the toy department – which Alex still does before we leave; I shell out $10 for a WWF plastic figure that he swiftly names “grandpa.” I find the cart later, seemingly abandoned in not in toys but in men’s wear and brimming with T shirts, pants and three boxes of shoes. Ned picked out a lot of this stuff for himself and for Alex. Some cool looks, too.

Alex I find nearby, collapsed in a beanbag chair in the center of an aisle. “I found the chair,” Ned says. “He liked it when he sat in it and I pushed him around.”

We bring Alex back to school; it reaches that time of day when I begin to calculate how much evening the two-hour drive home will leave. A residents’ and counsellors’ meeting is beginning in Alex’s house. Alex has been delighted to see us but doesn’t seem like the kid of six months ago. “See ya later,” he says, all of 16 and waving to us before turning to his residence manager, putting his face right up the man and saying, “Christmas tree!”

 

Coming Home

Alex’s training camp in his residential school, the first full month during which we were told to let him alone so he could grow used to his new life, is ending. He’s coming home for a few days.

He’s my son and I always lived with him. Now he lives up there. They’re now the ones who deal with letting him watch Elmo, getting him to eat, dissuading him from placing plastic animals on all the furniture and slapping number stickers on every wall. My house is peaceful these days, no doubt about it. The floor shines, the kitchen counter is actually clear three or four days a week. There are no pretzel crumbs on the couch.

Will he even want to see us? Ask Alex to do something he doesn’t want to do or go somewhere he doesn’t want to go, and he says, “No. No!” Will we be the objects of the no, no now? These and other thoughts often ran through my mind these past few weeks as my family and I adjusted to this new, somewhat liberated way to live with autism. His rumpled, cold bed doesn’t break my heart like I thought it would, I guess because Alex still lives here and yet he doesn’t; we still haven’t changed his last bedsheet.

Does he miss the asphalt and the subway? Is it too quiet up there to sleep?

“I feel sad at how happy I feel sometimes that he isn’t here,” says Jill.

I think I’ve forgotten how to talk to Alex. “It’ll come back to you,” she says.

He’s off to his version of college; he was ready, and as with typical college he’ll get out of it what he puts in. We passed the last four weeks knowing that whatever did happen we’d never see it coming. Nothing came. We’re now well into what I call “three-day mode,” where I congratulate us all every 72 hours that go by without a call saying that Alex is crying, wretched, begging to come home with cries of “Elevator! Elevator!”

But we haven’t bought a washer/dryer here: We’ve done nothing short of try to shape a life – sent him somewhere to teach him how to tie his shoes, eat a sandwich, earn some little kind of living – in a move that might ripple for decades.

We have gotten calls. “He laughed and laughed in the mirror on his second night at the Halloween face-painting,” his house manager reported. “He loves his corn on the cob. He bit his arm but transitioned right out of it.

He plays the bongos with housemates – they join in and they all make eye contact. Is there some significance to the number 8? He wrote it on the wall with a pen.”

Welcome to our world. Goo Gone works well. Let us know if you need to buy more. Other details: Alex on the computer, listening to music, “just hanging out with his housemates, adjusting well.” I miss him.

Many parents in our area have teens at Alex’s school. “It’s the beginning of your retirement,” says one mom, Angela, who loves the school and who doesn’t look like she’d put up with a bad situation for her son. “You don’t have to worry now for a few years.”

When she went up a few weekends ago to visit the school, she emailed back a pic of Alex. In it, he looked confident and happy, sprawled in a hoodie, the picture of yet another young man who can’t decide if he should shave or grow a beard.

“He looked good,” Angela emailed. “They said he’s been doing very well there and been very pleasant and he’s polite and he seems to be adjusting. He puts his own dishes in the dishwasher, and we had him deliver a note to his teacher.”

I thank her for updating us. I consider asking other local parents with kids in this school to also update us if they visit between times we go, but I don’t. I’m not sure I’d want that responsibility if someone asked me to do that for them.

The school nurse phones a few nights before Alex returns. “Oh, he’s just goofy.” (Goofy is good; goofy means not crying.) “For the first few days after he got here, when he returned to his house from the classroom building, he’d grab his luggage and head toward the door saying, ‘Home? Home?’” Does she think he knows that he’s headed back this way soon? “He’s said ‘home’ a few times,” she reports, “but I think he’s coming to understand that now this is his home.”

Wow. Alex now has a place in the country and a place in the city. He’s almost 17. I’ll soon be 53 and I’ve never had a place in the city and a place in the country.

Though, as I said and still can’t take in, my place in the city is quieter and neater now. Suddenly these days I don’t even glance anymore at the plastic animals over there on the bookshelf or filling the plastic box beside the couch.

Another of our first hurdles in this experiment looms: How will he react to coming home and then, after a few days, returning to school? “Some kids,” the nurse tells me, “they really loooove coming back to the school.” She said that as if it might hurt me to hear.

 

Schoolcamp (First Night)

Jill and I have gone through many days unprecedented among our friends or family, with the afternoon of Alex’s birth and his subsequent sweep into a plastic neonatal ICU box being people’s exhibit A. Sometimes, we learned the hard way, you simply cannot prepare for what nine hours of sunshine will bring. Like today, for instance.

But it’s over, and we head from Alex’s new residential school to a hotel nearby: clean rooms, unfamiliar pillows, a courteous front desk that patiently checks for us to see that yes, all area restaurants are in fact closed today.

We settle into the echoing lobby bar for a drink (“Sorry, just beer and wine … ”) and note that in this hotel in this rural ski community must make a good portion of its autumn income off parents who are having nights just like we’re having now. I remember when going to a hotel like this with Jill meant something special. Tonight it still does, just not what you think.

“So how’s he doing?” I later say into the phone, back in our room. Fits? Tears? Yawns? Snapping “iPad!” This call to his new school reminds me of phoning neonatal ICUs every evening 16 years ago. How’s he doing? Is the focus of my vulnerability still okay?

They say that Alex threw up.

We waited two years for this school (Jill sent me the text of his acceptance recently just as I arrived at jury duty; there’s justice and then there’s justice). Jill and I, determined to make this thing work, conclude that Alex just sounds like an upset cat in a new home. We wedge our unfamiliar pillows under our heads and go to sleep.  

(Much more happened that evening, I suppose. We bought Alex stuff at the local Walmart, for instance. I didn’t take many notes, but I still do have Aunt Julie’s texts to my phone: any problems? is he saying car a lot? be positive! anything we can do to help, let us know. i’ll call ned tonight. just to make sure he’s not having a big party with drugs and alcohol and, if he is, to go over so she can also have some drugs and alcohol.)

The school asked us to show up next morning around nine. The classroom is on Alex’s first day agenda, right after he sees the doctor for his indoctrination physical. As we pull into the school grounds, I wonder: What will Alex think this morning, when we show up in this place? Probably that he’s headed home with us after we asked him for some reason to sleep for one night in this sort of ski lodge.

This campus sprawls, dozens of buildings that in our exhaustion – two years – start to look the same to me and Jill. “Where are you going?” she demands from the passenger seat. “Do you know where this building even is?”

I reply that certainly I know, dear. Eventually we find his house.

“Good morning, Alex!” I show him the body wash I bought for him at Walmart.

“Body wash, Alex,” says one of the house staff. “Let’s smell.”

“Daddy! Gonna see Tina. Elevator… ” Tina was one of his afternoon caretakers, up until two days ago, anyway. “Elevator” is his word for “home.” Still, it seems like there’s more hope than desperation in his voice today.

“No, Alex,” Jill says. “You’re going to see the doctor this morning, then on to school…”

Alex has three doctors to choose from on this campus (later Ned will say that Alex probably gets better medical care in this school that he did at home – and we bought him pretty care medical and dental care…). We drive to the nearby building, are quickly admitted and Alex perches on the exam table while his mom and dad play out the familiar scene of answering a lot of questions from new medical folks.

It takes a while. “I can’t believe how patient he’s being,” the doctor says. No problems – there haven’t been any with Alex for a long time, at least not the kind modern medicine can cure yet – and we head to the new classroom.

It looks a lot like the classroom back in the city that became his ex-classroom in a thunderclap. Computer carrels, daily schedules Velcroed to the wall, and I’m sure a lot of other details I lack time to notice as an assistant teacher steers Alex out for a walk. It feels like we’re rushing to leave, but I can’t think of any other way to leave. Jill and I begin maneuvering – for the second time in 24 hours – to part from Alex while he’s distracted.

I drive away thinking of the two possiblities: Alex will do something so disruptive here that they’ll have to dismiss him, or they simply won’t be able to teach him. I think the chance of either is remote. It was a little better for him today than yesterday, and probably not as good as it’ll be tomorrow.

Schoolcamp (First Day)

Monday looms, and I try to shake the fear that the day will feel like dropping off a beloved cat at the shelter. Does Alex know what’s coming? Know he’s headed to a place he didn’t even pick?

Seven years ago, he hated his weekend sleepaway camp; around that same time a therapist gave him an IQ test. I watched him hesitate on the last Friday night before camp, then grab his suitcase and stride out the door for one more try. I watched him sigh over his last problem on the test, a linking puzzle he seemed to realize he’d just never solve. Does he know what’s coming?

We pack him up and leave mid-morning. Says Jill, “I never really envisioned how this day would go.”

The drive up is two hours. “Elevator?” Alex says in the back seat. Elevator is his word for home. “Elevator?”

“You’re going to residential school, Alex,” I say. “Schoolcamp. You’re going to college…”

“You’re going to go swimming at schoolcamp, Alex,” says Jill. “Will you go swimming at school, Alex?”

“Swimming,” he says. “Elevator.”

The school has a rolling campus, swirls of one- and two-story buildings, clean and cheerful between winding paths, grass and trees, sprinkled with one goat pen I know of and a few authentic New England covered bridges. One our first visit here – what? more than a year ago – the admissions lady dropped everything and gave Alex a handheld tour. On our second visit here, a formal meeting to determine if he’d fit at this school, Alex took several pieces of paper from Jill and on each wrote CAR deep in pen.

Today we finally stop the CAR and get out. “Whatyadoing?” Alex says. We step to the cafeteria to wait for whoever’s coming to start this new part of his life, and the first thing we see is a piece of metal artwork. It seems to be welded out of pipes, with old doorknobs Alex can grab to spin it. He doesn’t want to spin anything until Jill shows him what to do. Later she will remark that nowhere near this thing is a sign that reads Do Not Touch. “Instead, you touch it and something good will happen,” she will say.

The admission’s lady meets us. She has glasses and shoulder-length brown hair, like Alex’s Aunt Julie. Alex takes the lady’s hand, places it on the top of his head, nods and says, “Yes yes yes!” A game he plays with Aunt Julie.

About a dozen of us soon sit down to discuss Alex. It’s a long meeting.

Is there Wi-Fi in his new residence house? “There’s Wi-Fi down here but none in the house.” No Elmo and no iPad connected to the Net?

What’s he going to eat? No hot dogs, processed chicken or Utz pretzels allowed here. I start to wonder who this will really fly with him when it sinks in.

No regular tub. He’ll have to take a shower and not a bath.

At the meeting, staffers twice take Alex for a walk twice. Both times the staffers come back out of breath.

“Car, car,” Alex keeps saying. “Later car.”

“I think this can work out well,” Jill whispers to me.

 When they sit him down for lunch they apparently want to see if he feels adventurous. Soon he tucks into a box of plump chocolate chip cookies. He also obediently puts a forkful of quiche in his mouth, then gets up, walks to the wastebasket, opens his mouth and lets the quiche fall out.

He’s got to stretch into new directions. Nobody’s ever going to pay him to watch Elmo on an iPad. “Daddy. Elevator.”

We drive – little too far to walk, so sprawling is the campus – to his new house, which looks from the outside like a nice suburban home with an alarmed double front door and which inside would make a very passable little ski lodge if you wanted such a place with offices for a nurse and a house manager. My first college dorm wasn’t nearly this nice.

He gets out of the car, grabs his suitcase and strides for the front door, a moment of boldness to mix with the moments of determination to leave. First thing we see inside is a big construction paper sign that reads, “Welcome To The House, Alex!”

Down the hall, past the bulletin board featuring one resident’s haircut schedule, is Alex’s new room. He has it to himself, though they might move him in with a roommate in coming days – this school aims to kindle friendships. I pull his socks and underwear from the suitcase and shoot them into the dresser as if it’s the most normal action in the world. “Alex, let’s put these in here for now...” Jill stresses to Alex that she’s hanging his hoodie in what is now his closet. He arranges his two dozen plastic animals and figures in rows on his dresser. I plug together the little stereo that he listens to as he falls asleep.

“It is and isn’t home,” says Jill.

“Daddy. Daddy. Pret-zuls.”

I lead Alex to the kitchen to show him the dishwasher he can help unload. “He likes doing that?” says one of the house attendants. I see a set of bongos out in the living room; I tell them Alex likes to drum. “Anything you can tell us about what he likes or dislikes would be great.” Everyone in this school is warm and welcoming and happy he’s here. The kitchen also happens to be in the other end of the house from Alex’s room. While one of the staff shows him the refrigerator (“ … well no, we don’t have pretzels here, Alex … ”), I slip back to his room to talk to the house manager.

I point that by spring Alex might make a good messenger between the campus buildings. We agree that sans Wi-Fi Alex will just have to make do with learning apps. “Believe me,” I say, gesturing toward his new dresser, “you’ll be flattered by the plastic figures he picks to represent you.” I then notice that Alex somehow disassembled his stereo and stuffed back in a shopping bag.

Out by the kitchen Alex says “Daddy!” and tries to get back to us. One attendant gently blocks his way by sidestepping backwards then slipping in front of him while another attendant hauls over the bongos. Jill and I start looking for a good moment to exit.

“Daddy. Later car. Take a car. Elevator.” Still, no fits, no tantrums, no screeching on the floor. He doesn’t yet know what’s fun here, but he does seem willing to find out. Jill and I leave.