“Do you really know what you’re getting yourself into?” my husband, Tom, asks me. We are eating a mixed grill of steak, asparagus, and corn out on the back deck one June evening, enjoying the early summer air. Benjamin, our five-year-old son, is frolicking in the yard, which we’ve fenced in to keep him off the street behind the house. The little-kid wading pool is still deployed just below our deck, and I keep craning my neck to make sure Ben is not drowning in it. A savvier parent would have known to take this apart and drain it before dinner so that a little child couldn’t silently perish.
“It’s just a train ride,” I say.
The school year has just ended. Ben qualifies for “extended school year services,” which is essentially special-education speak for summer school offered to students deemed “at risk for substantial regression.” But it is still three weeks until the program will start—three solid weeks of unstructured Ben time. Since Ben is a serious train enthusiast, I think a day of riding the rails sounds like a good plan.
“Just don’t wear your Yankees caps.” Tom says this with a threatening sort of scowl, but I know he is just entering into protective mode, predicting and anticipating Ben’s interactions with the world. We both do it. He is just better at it than I am.
“Why not?” I am always looking to stretch Ben’s comfort zone, to bring him back to Earth and off his planet. Decorating our heads with the devil seems an appropriate next step to me. We will certainly be noticed.
“Have you ridden the train, say, after a Red Sox game?”
OK, no, I haven’t. Despite being a Boston area resident for more than twenty years, I have still not been to Fenway for a baseball game. There isn’t a game tomorrow, but I understand how loyal these “bleacher creatures” are to their home city.
“Do you know what you would be getting Ben into?” Tom takes a bite of his corn, fiercely, as if he is a weary, old local and I am a foreigner. Point taken.
Sometimes, I do feel like a foreigner with my son. Ben was diagnosed autistic at a mere twenty months of age due to his utter disinterest in language, eye contact, gestures, or generally interacting with anyone anytime. Through all of the initial heartache and confusion, I held onto my work, trying to finish my training as a pediatric cardiologist. Now, three years later, my priorities are changing. Having recently walked away from my professional career with a gentle I’m sorry—which was met by many blank stares in my department—I am becoming mother to Ben first, a doctor second. I’m a bit daunted.
“Percy smiles!” Ben yells up from the wading pool. He is half on topic, his usual flavor of communicating. He knows Tom and I are talking about trains, and somehow about him, but he does not want to get close enough or involved enough to engage in the conversation. It’s easier to choose from his enormous mental store of Thomas the Tank Engine train cars, with some mention of facial expression thrown in for good measure. He is a good student of autism therapies, in his own way.
“That’s right, Ben. Percy likes to smile. How about James? Does James smile?” I don’t know which train cars to pick—which ones might possibly have the most meaning to Ben. I am getting behind in my Thomas repartee, aged out by my ever-faster son. Without answering me, Ben trots over to the vegetable garden, where he likes to crouch down and munch on the chives.
The next morning, with summer vacation upon us, Ben and I hit the rails. Early on, at South Station, I discover the information kiosk and its stacks and stacks of train tables. These instantly become Ben’s favorite reading material, although he insists on calling them train schedules, not tables, since they do not actually have four legs and a place to put a chair.
Ben likes to quiz me about the stations and the times, which he has already memorized. He cracks jokes, in his own sort of way, such as declaring that the Ruggles station comes after the Auburndale station, even though these two stations are on entirely different commuter rail lines. This cracks him up every time.
We ride all over Eastern Massachusetts, stopping at various places to go on big adventures. The docket includes a visit to the hectic and often over-stimulating Boston Children’s Museum, one of the many downtown trolley tours, play dates with friends, and eating out at restaurants. Ben seems to favor the Needham Line, which is a quaint little commuter rail line that stops often and never seems to exceed about thirty miles per hour. I think he also likes this line because the last stop, the Needham Heights station, is situated right behind the gym Tom and I sent him to when he was four, in an effort to teach him popular sporting events. His favorite part of the gym classes was watching the 5:30 train pull into the station and let all the passengers off. While admiring the train from the steps of his gym, Ben would often ask me, repeatedly: “Mommy, is there a buffer at the end? Does Needham Heights station have a buffer at the end?” Yes, honey, it probably does.
Personally, I prefer the Framingham/Worcester Line because, efficient person that I am, I like the fact that it shoots like a rocket through town and can get us to Boston in a heartbeat. Not surprisingly, my favorite line tends to be populated by hard-charging business types, typing away on their laptop computers or talking on their cellular phones or both, while the Needham Line is more of a family affair.
No matter which line we take, the passengers on our train car invariably have the unexpected “treat” of having their very own little conductor. Ben knows the rail lines cold, and at every stop, sometimes even before the real conductor walks through, he belts out something like, “OK, people, this is Back Bay Station. BACK BAY STATION! Next stop is South Station! Last Stop! South Station is the last stop, folks!” For Back Bay, he tells them it is “the dark station,” which I hope people don’t misinterpret as a comment on race; I think what my preschooler means is that it’s the only underground station on this particular route. Ben is always right in his train announcements.
I do not much care what others think of my little boy’s pronouncements, but I do care what they say to him. The closest Ben has ever come to knowing he is autistic happened one time when we were in Whole Foods, picking up some lettuce. He was four, still small enough to fit in the child seat of a grocery cart but old enough for others to expect him to interact. I had nestled Ben firmly in the cart to prevent him from wandering off or otherwise ignoring me, and another little boy tried to engage him. After many failed attempts, the boy turned to his father and shouted, “Daddy, what is wrong with that boy? He won’t talk to me! He won’t even LOOK at me!” I could not get out of that grocery store, with all its harsh realities, fast enough. I remember Ben looked away from the boy and then at me as though the lettuce was wilted, nothing more.
At the end of each vacation day, I talk with Ben about the events that occurred—a debrief—practicing language skills just as they do through activities like show-and-tell at his preschool. Ben’s show-and-tell day is always Friday so that he can rehearse in the days leading up to it in his one-on-one speech therapy sessions. His prized chosen item will go back and forth to school with him multiple times, leading up to the big day. That way, he won’t fall into the familiar autism trap of prompt-dependence, where a child can only perform a certain task in a certain setting because that is how and where he learned it and, thus, the skill has not generalized. By the time Ben’s turn at show-and-tell comes along each week, he is like a salesman for a television shopping network: “This is my conductor hat, and I really like it, and I got it at Target, and. . . .” These kinds of activities are vitally important in Ben’s speech development, so I figure our vacation together should be no different. Practice, practice.
One afternoon, Ben and I are relaxing together on the couch at home after another busy day riding the trains. It is near the end of our vacation, and I am exhausted yet sad that it is coming to an end. I start off enthusiastically, trying to ignite a debrief: “Ben, do you remember when we walked across the big blue bridge to the Boston Children’s Museum today? And Arthur was on top of the building! What did we see in the water? What did we see in the water when we looked down from the big blue bridge?”
“Mommy, we have a 9, and a 12, and a 68,” he answers with authority.
This sounds like a strange thing to say in response, but my child is numbers-obsessed. Currently, he’s looking at my iPod playlists, but he’s also been delighted by the Registry of Motor Vehicles lately.
Earlier that week, we had a play date with my friend Shauna’s kids at her house. Instead of, “Hi, Shauna. Thanks for having us over. Where’s Chris?” Ben greeted her with, “We have an eleven. Number two is ‘Makes Me Wonder.’” Then, with no distinguishable segue: “Mommy’s license plate was a 15, but now it’s a 17!” If I hadn’t stopped him, he’d have been outside in the driveway, admiring Shauna’s new registration sticker on her car, too.
Now, sitting on the couch, I try again. “Yes, honey, I know.” And I know you don’t want to have a regular old, normal conversation with me. “But I have an important question for you, OK?” Ben stares at his hands, then at the television’s remote control, pushing the pause button repeatedly. I continue. “Ben, did you have fun on our vacation together?”
“But then the 68 turned into a 37,” Ben interrupts. “Mommy, why did 68 turn into 37?”
I take a quick look at the iPod and determine that a certain preschooler’s curious fingers must have morphed one of my favorite playlists, dropping a bunch of songs.
I reply, “Honey, all the music is still there. The playlist is just smaller now. Mommy will figure it out, I just don’t have time right now.”
I have not had much time at all in these last few weeks of Ben time. No time to write the cardiology research grant I was supposed to submit by the first of the month, for example.
I try again: “Ben, what was your favorite thing from our vacation together so far?”
“Mommy, Ben lives at 74 Oakland Road,” he announces, looking at his feet.
“Ben, look at me with your eyes. Did you have a favorite thing we did during our vacation together?”
I am pushing this favorite issue because it is something Ben’s teachers worked hard on in class with him recently. It’s worked before; a few days ago, he told me his favorite turtle species at the Science Live! turtle show was the box turtle because it can completely close up its shell. I hope this is an easy in.
“VIDEO KILLED THE RADIO STAR!”
I try harder. “Ben, I asked you a question. Look in my eyes. What is your favorite par—”
“IN MY MIND, I BROKE MY CAR. . . .”
To be clear, I think the lyrics to that 1979 Buggles lament say something about breaking a heart, not a car. This is my favorite song on my ’80s music playlist. Ben knows this. This is one of his favorite ways of “communicating.” He has a sneaky, sweet way of “talking” about things that he knows matter to his favorite people without ever using much in the way of dialogue.
Maybe I have to meet Ben a little more in the middle here. I try, “Ben, are you thinking about the music on Mommy’s iPod? What is your favorite song on Mommy’s iPod?”
“‘Dani California’ is number 11.”
He is jumping playlists. It takes me a moment to catch on, but I realize that this is one I made for working out on the treadmill at the gym, in memory of an old friend. Actually, I thought ‘Dani California’ was number 9, but I have to accept that Ben is right. On such matters, he is always right.
“Do you like that playlist the best, the one with ‘Dani California’ on it?” I try.
“It goes to 20. Number 5 is ‘Holiday’ by Green Day. It used to be number 7. ‘Snow Hey Oh’ is number. . . .”
I should just put the thing on shuffle, but Ben would most certainly not tolerate shuffle.
I interrupt: “I like that playlist, too, bud. What is your favorite song on that playlist? Do you have a favorite song on that playlist?” I am starting to sound like a broken record myself.
Ben chimes in, “Do you really want to hurt me?” singing the lyrics to that Culture Club number in perfect tune and with a style, well, all his own. He is back to the ’80s music. I’ll have to get this particular lyric out of his mind before he starts summer school; I do not need my child belting out this particular phrase in the middle of Circle Time.
“Ben, I would never want to hurt you. Did you like the dinosaur exhib—”
“Do you really want to MAKE ME CRY?”
“Ben, let’s talk about the Boston Harbor Cruise. Did you like that? My favorite part was seeing the U.S.S. Constitution at the Charlestown Navy Yard. Did you like going on the Boston Harbor Cruise and seeing all the bridges? The Tobin Bridge? The Zakim—”
“No what, honey?”
“Mommy, PLEASE don’t ask me something!”
Now we are talking. Albeit about not talking. Since he is engaging me, I decide to respect this and give up the attempted pleasantries for a while.
“OK, bud. But I am going to ask you more about our vacation together later. OK?”
“Oh, Mickey, you’re so fine—”
“—you’re so fine, you blow my mind.”
“OK, you win.” The truth is, I am done—done trying to get Ben to look into my eyes on my terms, done hassling Ben to interact with me, done forcing dialogue when silence is what he yearns for, done pushing therapy all day long. Our vacation days are nearly over, and Ben has done so well, overall, despite all the shake-ups in the usual structure of his days, and I am very proud of him. He is such a trooper. Tom and I say that often. And at that moment, snuggling with Ben on the living room couch while he steadfastly avoids my gaze and my questions, that’s enough.
On Sunday, the last day of our vacation together, Ben and I disembark the train at South Station in downtown Boston and end up back at the tourism kiosk. Ben wants more train schedules, and I want to compare trolley tours. While discussing options with the guy working at the kiosk, I spot a T-shirt in the display case with the detailed map of the Boston subway system—otherwise known as the “T”—on it and know Ben will love this little treasure. I have to get the smallest size.
Soon, we are on an open-air trolley driven by an older, weathered-looking gentleman with a blond beard covering his startlingly pink skin. The man is slightly intimidating and delivers an insane-sounding monologue. The “Tips Appreciated for a Job Well Done” jar rattles loudly while we jerk and bump along the old, patched Boston roads.
Ben seems unusually tired and bored, and I sense his impatience as he rummages through my bag and pulls out a train table. From his precarious position on his trolley seat, Ben announces, “Mommy, we’ll take the 2:40 home, OK? OK, Mommy?”
“Sure, Ben, sounds good,” I reply, then reconsider. I’ve forgotten a map or a watch, but by the sun’s shadows, I think we are going to be pressed for time to make a train that early. “Or how about the 4:30?”
“No, we’ll take the 2:40,” Ben replies confidently. “It gets in at 3:06.” Then, though we won’t be traveling that far, he asks, “Does Worcester station have a buffer? Does Worcester station have a buffer, Mommy?” Yes, Ben, it probably does. “Worcester station is the end of the line!”
Ben and I have a game we often play at bedtime, in his bed together with the lights off, called “I Know.” It is not exactly a good game for working on his functional language, but sometimes therapy needs to take a rest, too. Ben usually starts it off, with something like, “I know . . . James!” That is my cue to reciprocate with a different Thomas train car. The only strict rule of the game, so far as I can tell, is that no train car can be repeated, and Ben is always quick to correct me. We go back and forth, and it’s as if we are painting a beautiful landscape, train car by train car, together, until, inevitably, I run out of Thomas train cars before he does.
Though there is no competition in our bedtime games, I think Ben must prepare for them somehow, because a new and rare train-car name always rolls off his tongue, effortlessly, when it is his turn, as if he has a written list in his hot little hands and is checking off his entries one by one. But on this last night before summer school starts, Ben goes off script. While I am stuck on my turn, trying to dig up yet another train car name from my memory, he interrupts me. “Mommy, I know my favorite part of vacation. My favorite part of vacation was riding on the commuter rail and seeing everything out the window. That was fun.”
“That was fun, Ben. That was a whole lot of fun. Thanks for telling me.” I imagine that in his mind, he is surrounded by hundreds of Thomas train cars dancing around. And with that, I kiss his forehead, we hug each other tight, and he falls asleep.