The trip culminated with me sobbing at the rim of the Grand Canyon in our ugly rental car.
“Mom? Seriously, what did you think was going to happen?” said Henry. “You brought us to the World Capital of Rocks and Pollen. Dad can’t walk, and I can’t breathe.” John’s knee problems had worsened recently, and who knew that the floating clouds of cottonwood seeds—what Henry called the Killer Fluff—would trigger the worst allergies of his life? “And look at Gus,” Henry added. At the mention of his name Gus looked up from the backseat, eyes filling with tears. He hated everything about being away.
* * *
Most parents say they want their kids to have a better life than they had. But my parents had given me a great life; I just wanted my kids to have a different one. Specifically, I wanted them not to be a coward like I was. I loved sitting home with my mom and dad in their suburban cocoon watching Mary Tyler Moore and stealing the apple cobbler out of their Swanson TV dinners when they weren’t looking. I was deliciously sheltered and cosseted. But I wanted to raise my sons to be people of the world, the kind of guys who would think nothing of striking out on their own, who didn’t mind putting up with a bit of discomfort for the sake of experiencing the new and the different.
Instead, they were just like me, addicted to comfort and luxury. I have always subscribed to Joan Rivers’s quip about room service: “It’s like a blow job. Even when it’s bad, it’s good.”
So our pretravel conversations would go like this:
“We need a place with an indoor pool, because otherwise all the mosquitoes will get in the pool and eat me,” Henry said about one proposed excursion to New Mexico.
“Stop worrying, it’s near the desert, there aren’t a lot of flying bugs.”
“We MUST find a hotel with an indoor pool.”
“Look, this is stupid, there aren’t a lot of insects in the desert. There are just scorpions.”
Henry became pale. “What? That’s it, I’m not going. This is like telling me, ‘Hey, don’t worry about being in that fight . . . nobody has knives, just flamethrowers.’”
* * *
When I was twelve, my mother decided to take me on a road trip in the cherry-red Buick Riviera she called the Pimpmobile. She had just discovered CB radio, and was nerdishly enthralled; as a radiologist, she decided her handle would be Hen Medic. Hen and I were setting out to see America’s national parks. She let me pick the hotels, ensuring we spent much more than we could afford. My only recollection of that trip was my irritated mother screaming “LOOK OUT THE WINDOW” as I lay in the backseat, reading Are You There God? It’s Me, Margaret. Also, there were woodchucks. These two memories cost my mother thirteen weeks of her life.
* * *
One day during winter break Henry and I were sitting in his room watching a game. “Doesn’t that sound bring back good memories?” he said.
“What sound? All I hear is the sound of the heater humming.”
“Yes! That. It’s just so warm and it makes me think of Christmas.”
“So . . . not the tree or carolers or the smell of warm cider and cinnamon? Or not one of the little trips we’ve taken? Not going to see the family, or parties, or—”
“I have a lot of great memories in this room,” he said, a little defensively.
“If you are nostalgic about the hum of your HVAC unit, I am the worst mother who ever lived,” I said.
So I tried a different tack. This time, I planned an entire trip around the concept that my husband couldn’t walk very well, but also refused to acknowledge this problem. This is what cruises are for: fashioning yourself as a bold adventurer while guaranteeing you are never without a cocktail and air-conditioning.
Right before we were due to leave for Alaska, John opted instead for his perfect vacation: being home by himself. At least, that’s how I presented it to friends. In truth, he was having minor medical issues, so I could understand how he might not want to go. But the idea of Gus on a boat with only me triggered John’s worst travel anxieties.
“Watch him,” John said, darkly.
It’s not like John’s fears were unfounded. This is because, well, that day Gus wandered off at the Laurie Berkner concert was hardly unusual; from the time he was three to about ten, on any given outing I’d usually end up describing my missing son to a concerned policeman.
It’s a common problem with autistic kids. According to one study in the journal Pediatrics, about half of all kids on the spectrum will wander off from a safe, supervised space. There had also been the recent tragedy of Avonte Oquendo, a fourteen-year-old nonverbal autistic boy from Queens who had wandered out of his (supposedly locked-down) school, despite warnings from his parents that he was a flight risk. Parts of his badly decomposed body were found three months later, washed up on a Queens beach.
“Watch him,” I heard every hour, for the next three days.
John just had to say “Paul Giamatti” to bring it all back to me. Gus was four. We were at a kid’s birthday party in Greenwich Village at a party space that was a converted stable; the actor and his son were there. The party space opened onto the street. Someone left the door open, and Gus made a beeline for the exit. Giamatti tackled him before he ran straight into a car that had been backing up. I’m not sure who was wearing the Superman costume at the party, the actor or his kid, but in my mind it is always Paul Giamatti.
Gus’s tendency to wander off ended when he was about ten. I was very lucky, because many parents of autistic children discover that if they have a wanderer at five, they still have one at twenty. But John remained forever traumatized by memories of Gus going missing. He also had zero confidence in my memory and attention span. Nor was he confident that Gus had finally developed a proper fear of heights, making it all too possible that he would decide that it would be fun to plunge off a deck. In this, as with many facets of Gus, John couldn’t see the change. He remained certain that if he weren’t there, either Gus would bolt and dive off the side of the ship, or we would go on an excursion off the ship and I’d forget to bring him back, as if he were a pair of socks.
Here are the things I learned on our trip to Alaska:
It is possible, if not at all desirable, to live in a closet with my children. That was the size of the room. When I saw that there were bunk beds, and they folded out of the ceiling, I offered a quiet thanks to God that we weren’t also sharing the room with John.
For Henry, any griping can be countered by the phrase “all-you-can-eat buffet.”
Bald eagles can be as creepy as pigeons when there are dozens of them circling above you.
Dolphins really are the happiest animals on earth, or at least they seem that way when they’re wake-surfing behind your boat.
The Internet is not a practical diversion on a cruise ship, which I only learned when I was presented with an astronomical bill because I had forgotten to shut off Gus’s iPad.
A fourteen-year-old cannot play poker in the casino, no matter how many creative ways he comes up with to do it. It killed Henry that there was a casino on board but it was off-limits to him—because of his age, not his reputation as a cardsharp at the poker game he runs at high school lunch hour. “No, I will not wear a wire and take your instructions,” I said, nevertheless slightly flattered that Henry saw his mother as a villain in a James Bond film.
My lifelong hopes that Gus was gay—what gay man doesn’t adore his mother?—were briefly revived when he insisted on going to the Elton John documentary and a Stephen Sondheim revue. Cruises have daily schedules, which became a fixation for Gus: we were going to the Love Boat Disco Deck party because it was on the schedule.
Yes, he spent a fair amount of time watching people get in and out of elevators, despite the fact that that wasn’t on the daily schedule. And yes, he announced every morning how many days there were till we returned. But there was no afternoon sobbing. Instead, about that time every afternoon, he would retreat to his computer and quietly look at pictures of his room at home.
* * *
The following summer I decided that I needed to adopt a different concept for family trips. First, they could not include all of us. It was impossible, as nobody liked to do the same thing. Second, they could not be about fun, for me anyway. If that’s what I was promising, I was destined to lose. Instead, I had to be open to travel as fulfilling a specific goal, generally a goal it would never occur to me to have. One of my sons would have the adventure he wanted; I’d go along for the ride. Excitedly, I relayed my new plan to Henry.
“Then we’re going to Caracas in Venezuela,” he said. “Sure, they have the highest murder rate, but did you know they also rank number one for hottest women in the world?”
I suggested he find another goal. Which is how we ended up in Paris during the Euro games. This time his goal was to chant for his team, England, with as many drunk people as possible. I was willing to overlook the possibility of being pummeled by angry Slovakians to spend an hour of our lives together at the Musée d’Orsay with Whistler’s Mother and van Gogh’s self-portrait. I showed him Courbet’s L’Origine du Monde and said it lives at the Musée d’Orsay, and that being the kind of art most teenage boys can get behind, off we went to Paris.
Since I can still get lost in the neighborhood I’ve lived for thirty years, we picked up sightseeing guides along the way. The guides were wonderful and allowed Henry to collect interesting and entirely unrelated factoids that he can still rattle off at will. With one of our guides, Jean-Paul Belmondo—he probably had another name, but that’s who he was to me—Henry, now Henri, found a fellow atheist and self-professed anarchist who called himself a freelance philosopher. Jean-Paul had written several books, among them a humor collection for anarchists and an erotic guide to the Louvre. He had many racy tales to tell. It’s hard to resist anyone who has stories about himself as a beautiful boy seduced by Jean-Paul Sartre.
At one point Henri was refusing to try chocolat, because it is dark and not the Nestlé’s pap he was used to. And the guide said, “Henri, remember when you were about ten, and someone mentioned a girl and you said, ‘Ew, yuck, ptui.’ Remember that? Well, now if I said to you, ‘There are four girls waiting in my apartment, and they are all twenty-two, and they all want you, and I will give you the key to my apartment’—would you take the key? I think you would. Well, that is how you will feel about chocolat in a few years, when your tastes mature.” I realized this guide should also be a life coach.
Despite the fact that I managed to find ghastly food (who eats badly in France?), it was the first semisuccessful trip I’d taken since my kids were born. The only serious fight we had was about Brexit. We happened to be in Paris the night that the UK decided to withdraw from the Common Market. Because his father is British, Henry has dual citizenship. But I think he developed an opinion about the whole thing ten minutes before the count began. He could not stop watching. The count went on most of the night, and I woke up to Henry pounding his fist into the mattress. In the time it took the UK to leave the European Union he had become, in his mind, 100 percent British. “Now I will NEVER be able to work in Europe. That bloody Boris Johnson has ruined EVERYTHING.”
“Can we worry about your theoretical lost opportunities in your theoretical career when it’s not three a.m.?” I said. At which point he threw his pillow at the TV and started sobbing. Some of us don’t do well with jet lag.
But that was our only bad moment. Flush with success, I came back home and decided to tackle the other vacation hurdle: Gus. We would have a purpose. We would go to Disney World to see villains.
Even though villains were his current obsession, his immediate answer to going anywhere would be “No.” So I knew he needed a special invitation. Gus had begun an email correspondence with Maleficent a few months earlier. He wanted to know how she stayed so evil—did the cloud of fog help?—and wondered if, since they both loved music, they could be friends despite her villainous ways. (Your child can correspond with her, too, at [email protected]. Also with the tooth fairy at [email protected]. I need to get more hobbies.)
So for this trip, Maleficent needed to make a personal plea:
Dear Gus: I’ve been thinking about you. It’s been a busy time here, what with the new evil spells I’ve had to concoct, and I’ve spent most of my days turning into a dragon. But I’d love to meet you one day. Why don’t you and your mother drop by Disney World?
Your friend,
Maleficent
In my haste to write this email, I actually wrote, “Why don’t you and your mother drop by Israel?” so there was initially some confusion. But when I made it clear Maleficent was in Orlando, it seemed we were on our way.
When it comes to characters like Maleficent—and Siri, and a host of other fictional creatures—Gus knows they are not real. Sort of. F. Scott Fitzgerald said the test of a first-rate intelligence was the ability to hold two opposing ideas in mind at the same time and still function. This is how I choose to look at the whole situation.
When I told Gus we were visiting Maleficent, he glowed with excitement, and I got a great deal at the otherwise pricey Grand Floridian, because a small child had just been eaten by an alligator there. (A bargain is a bargain.) I promised to bring a box of Cheerios because, shockingly, the Happiest Place on Earth has a deal with Kellogg’s instead of General Mills, meaning there is not a Cheerio on-site. (Autism awareness is all very well, but the real point of this book is to make Cheerios available at Disney World. Write an outraged email to [email protected] and tell them Gus sent you.)
For several nights before leaving, though, there was a lot of processing about our previous trip to Disney World a few years earlier, when the boys were ten. Henry enjoyed it mostly because with Gus we had a disability pass so we would not have to wait on the longest lines. I thought we’d reserve it for moments when Gus got really antsy, but I should have realized it was Henry who hated to wait on the lines. “AUTISTIC KID HERE, COMIN’ THROUGH” he’d shout everywhere. After a day I got him to stop, but not before he tried to find out if the Autism Free Pass, as he called it, also got us discounts on the food.
That trip was before Gus’s Disney villain obsession kicked in, but it fueled a fear of thunder and lightning that was already firmly in place when our monorail got hit by lightning in a flash storm. It really wasn’t as bad as it sounds—Disney being famously prepared for every eventuality—though it did knock Gus and Henry off their seats, and in the quiet that followed when the power went down as we waited for instructions, Henry gleefully announced, “I think we have a lawsuit here.” But Gus never quite got over it, and now we had to have many conversations about what the phrase “lightning doesn’t strike twice” means. For once, I wasn’t trying to make him understand an abstract concept that was beyond him. I wanted him to take to heart its literal meaning.
Of course I should have checked. As it turns out, Maleficent and almost all the other villains only hang out at Disney World for a few weeks around Halloween (I’ve got to get into the Villains Union). No Captain Hook, no Cruella de Vil, damn it. When I told him I had called everyone I could think of, and I was sure this information was correct, there were some tears. I considered sending Gus another note saying Maleficent really was in Israel (because that’s what the Middle East needs—more villains), but instead I told him that she and her friends had been called away on some evil business that she had to keep secret. She was sure, though, they’d meet again.
I was in a panic. I needed villains.
Which is how we ended up one evening at the Cinderella’s Happily Ever After Dinner with Cinderella, Prince Charming, and, most important, her diabolical stepmother, Lady Tremaine, and evil stepsisters, Anastasia and Drizella.
This is what happens. You’re eating a buffet dinner with Cinderella characters at a Disney resort with your teenage son, who is totally jazzed and rather noticeable amid the sea of five-year-old girls twirling in their princess costumes. Your choice is either to question all y
our life decisions or to develop Stockholm syndrome. So suddenly you’re all “WHERE’S PRINCE CHARMING?” though your son is explaining to you why he doesn’t really want a photo with the prince himself, because that would be weird.
The moment I stopped inwardly rolling my eyes at everything Disney was the moment Anastasia and Drizella came over to our table and absolutely thrilled Gus. They were perfectly in character, and somehow managed to convey their evilness while being kind of adorable. Gus got one of them to hiss like her evil cat.
And Prince Charming? He was probably nineteen. He called me Madam and bowed and did not seem at all perturbed that a middle-aged woman was pervily chasing him around the restaurant for photo ops. There are some things in life you can’t prove but you know are true, and I know that there is a porn flick featuring young men and MILFs called Someday My Prince Will Cum, and Disney lawyers have not been able to quash it. Yes, they serve wine at the Happily Ever After Dinner, why do you ask?
In most of the photos, Gus looks completely insane. He left the evening babbling incoherently about villains. A bemused Disney “cast member” (restaurant hostess) had been watching him the whole evening. “Yes, he is,” I said, in answer to her silent question. She is not supposed to break character, but we began talking. She used to work with kids on the spectrum, and her own son had a variety of issues, including surviving cancer when he was twelve. She explained what was up with ASD kids and the villains. The villains, she said, are painted in such broad strokes that it’s wonderful knowing who they are and what they do—as compared to infinitely subtle humans, who may indeed be villains but are mostly unrecognizable as such. Disney villains (like the Thomas the Tank Engine trains) offer such clarity. If only we could all recognize the dastardly among us by their laugh or their eyebrows.
To Siri with Love Page 9