Philadelphia Story on the Day of the Dead

Sunday we drove to Philadelphia to see a good friend. He was driving into the city from one direction and we from Jersey, and we agreed to meet in South Philly. We drove past what I noted was a Vietnamese restaurant and then lines of police cars and small groups of policemen, and lots of people walking vaguely in the direction of a giant pinata that Jim promptly dubbed “like the Trojan Horse” (it was a burro shaped pinata) and that we later realized was part of a Day of the Dead celebration. Jim found a barely the right size parking place on a city block and maneuvered the car in. We started walking, ducked into an Italian seafood restaurant to use the ATM, and sighted our friend, Hal, across Washington Avenue. Lunch was suggested and we started to debate about what to eat.

“Spring rolls,” Charlie said, soon as we asked him what he’d like so we backtracked to a Vietnamese restaurant and sat down. Charlie insisted that Hal sit next to him as conveyed by a definite “no” when I asked if he’d like to sit by me. The spring rolls that Charlie likes are technically summer rolls but somehow we referred to them as “spring rolls” when Charlie started to eat them, and the name stuck. (It’s my error, most likely—-the cylindrical rolls remind me of the Chinese egg rolls, aka spring rolls, that we used to help my mom make.) If you haven’t had them, they’re made of rice paper made soft from soaking in water, rice vermicelli, shrimp, green onions, and sometimes slivers of pork, and they’re served with a salty-sweet-sticky peanut dipping sauce. We also ordered Charlie a bowl of rice vermicelli with actual spring rolls, deep-fried and crispy.

He ate the soft summer rolls with gusto and used his soup spoon to get every last drop of sauce, then set to work on the noodles. He poked at the spring rolls, raised one to his nose to sniff it, and put it back in the bowl. When I offered to trade him my vermicelli for his spring rolls, he readily agreed. I handed over my bowl after a couple of requests pertaining to fork, face, and napkin, and then hastily leaned across the table when I saw that Charlie’s water glass was perilously placed on the edge of the table between him and Hal.

I’m not telling this story to be a restaurant critic or to add another chapter in the annals of “how to take an autistic child out to eat in a restaurant.” (One thing that works for us: Leaving happy and, preferably, with a reasonably full stomach is always preferable, even if you have to eat fast.) (Another thing, while I’m at it: Choose a place that’s rather noisy and that will tolerate a bit of a sticky floor.) I especially noted Charlie’s disinterest in the deep-fried brown spring rolls and preference for the soft white summer rolls. Sensory sensitivities (tactile defensiveness being perfectly conveyed in Whitterer on Autism’s line drawings) are a topic raised, it seems, by individuals at all “ends” of the autism spectrum. One friend refuses to wear wool anything, and knit sweaters more generally (something about what they feel like on said friend’s arms). In the midst of a back and forth about being “high-functioning” vs. being “low-functioning,” a commenter noted some who need special treatment, due to sensory sensitivities that make certain textures, colors, tastes (and I’d add, shapes, smells, temperatures) of foods unbearable, to the extent that some individuals may starve themselves.

Luckily the above-mentioned friend, polarfleece was invented (probably luckily for Charlie too—-rare’s the time I’ve tried him wearing a sweater). We also discovered for sure last week that Charlie prefers his clothes on the loose side. He’s been growing so quickly that he’s been growing out of his clothes at an unprecedented rate. I realized, belatedly, that his pants must be pinching him hard in the waist and who knows but that had something to do with some seemingly unaccountable moments in the past few weeks? Larger pants were duly purchased; Charlie not being one to go through the tedium of dressing rooms, I checked the length and we were out of the boys’ clothing section. But while the length was almost just right (I cuffed the bottoms), the waist was way to big and Charlie was regularly enjoined to pull up his pants. He hasn’t seemed to mind doing this now that the pinching in the stomach problem has been solved, but he really needed a belt, and so back to Target we went on Saturday night.

I was still wary of fastening the belt too tightly. Charlie is certainly verbal—-how else would we have had lunch at the Vietnamese restaurant—-but telling us “my pants are too tight, it hurts” or “my stomach feels sick” or “when you talk in that tone of voice, you remind me of something bad that happened in the past”: His words can’t (yet) convey these, so we have to look at what he does to get a sense of what he’d tell us if he could.

Such limited language ability suggests—says—”low-functioning,” I guess. I always stumble over that word and over the use of the word “functioning,” whether it’s “hfa” or “lfa” that are referred to. A CBC News video, Positively Autistic, occasioned some pointed discussion about “lfa” and “hfa.” There’s plenty that Charlie can’t do that children his age can. His homework involves writing his first and last names and the numbers 1-5, and doing single-digit addition with a calculator. He walked, sometimes ran, ahead of the three of us on South Philly streets, and stopped at the sidewalk and looked back at us before crossing. He started moaning and sounding overall distressed and I finally heard him asking softly for a “green drink.” He tensed up and sounded really distressed when Jim and I talked too much, and too avidly, about the latest goings-on at school for Charlie, who’s been going through “transition pangs.” We let our voices trail off and took turns talking to Hal about things when Charlie was out of earshot.

Yes, Charlie isn’t able, at this point, to talk himself about what’s going on at school, about how his pants fit, about what he might have wanted to do on Sunday afternoon. But there’s more understanding—more competence to presume—in Charlie than what he says may suggest. (And how able is the average person in explaining their emotions and feelings; why they believe in what they do; why they are voting the way they plan to on November 4th? How often do you get into disagreements, conflict, a fight, over information that is miscommunicated and the misunderstandings that result?)

We walked to Hal’s car first and we all got in, Charlie perched in the middle of the back seat and me squashed into what’s left on the right back seat. We spend so much time in our car—its odometer is nearing the 100,000 mark—that it feels very odd to be in any other car and perhaps especially one like Hal’s, with a pristine back seat free of hidden aged French fries and soda stains. Hal drove us to our car. Charlie lingered in Hal’s, after Jim and I had said our good-byes. He finally said “bye Hal” from somewhere within the blue hood of his sweatshirt, then unbuckled the seat belt and slid out, and ran to get into the back seat, still sprinkled with beach sand and the whiff of summer, of the black car.

We passed the giant pinata again as we left. It wasn’t meant to be broken with sticks to reveal sweets and prizes within but who knows what treasures might be stowed away inside it?