Embarrassment works particularly well from the ages of, say, twelve to eighteen. Henry has a history of not texting me when he arrives at or leaves a place. So recently, when he was going to an evening baseball game with a friend, I informed him that if he didn’t call at a certain time, I had gotten the number of the Mets announcer and he would hear over the loudspeaker at Citi Field, “Henry Snowdon’s mother wants him to phone home.”
This might not work in a few years. But he is only fourteen, and there are still fumes of my all-powerfulness. Maybe I actually managed to get the announcer’s number. Maybe I’d make that call. Could happen. Scary thought. He still believes. It was like the time he was six and he asked me what part of the buffalo the wings came from. Huh. Well, if Mom says they can fly, they can definitely fly.
In my defense, Henry has devoted a good portion of his life to embarrassing me, too. I kept a note from his beloved fifth grade teacher, Ms. Wahl, who I thought of as the Most Patient Woman in the World: “Hi—Henry is refusing to do the Pledge of Allegiance at graduation practice. He says that he doesn’t agree with America and that his father is a socialist. I said if he has a note from home I can excuse him but I kind of think he should just participate and say it. Thoughts?”
Being embarrassed seems terribly unpleasant, but like with many unpleasant things, we never stop to think of how important it can be to our humanity. If you are embarrassed, you understand certain hidden social rules. You know they’ve been transgressed. An overreaction to other people’s behavior at fourteen means that you are learning, gradually, how to modulate your own.
But what if you have a child who cannot be embarrassed by you—and doesn’t understand when he embarrasses you? What then? Nothing makes you appreciate the ability to be embarrassed more than having a child immune from embarrassment.
* * *
Recently I read this headline: “Philly Mom Gets Nasty Anonymous Letter about Her Son with Autism.” I winced, imagining how bad this was going to be. It was worse than that. Bonnie Moran, a woman with an autistic child, woke up to find this letter in her mailbox (not copy edited):
To the parent of the small child at this house,
The weather is getting nicer and like normal people I open my windows for fresh air. NOT to hear some BRAT screaming his head off as he flaps his hands like a bird. I don’t care if it’s the way you raised him or if he is retarded. But the screaming and carrying on needs to stop. No one wants to hear him act like a wild animal it’s utterly nerve wracking, not to mention it’s scaring my Normal children. By you just standing there talking to him don’t do anything. Besides you look like a moron as he walks all over you. Give him some old fashioned discipline a few times and he will behave. If that child needs fresh air . . . take him to the park not in out back or out front where other people are coming home from work, have a day off, or just relaxing. No one needs to hear that high pitched voice for hours. Do something about that Child!
Moran cried for hours.
This story has a happy ending, though. I contacted her after reading the story; she told me that eventually she found out who sent the letter, and invited her to come and spend time with her son to get a better idea what autism is like. The neighbor doubled down, saying that Moran was a horrible mother who was only trying to get attention. But when Moran posted the letter on a local Facebook group, she got many playdates for her son from appalled neighbors who wanted the boy to feel welcome in the community.
This story reminded me: all mothers of spectrum kids have moments of mortification. Me, too.
On the one hand, I’m blessed: when things don’t go his way, Gus doesn’t have meltdowns. On the other hand, even without them, social norms are meaningless to him. “He likes the MTA a little bit more than the rest of us,” I’ll say as Gus forces some unsuspecting out-of-towner holding a map to listen to his subway directions. I have dragged him away from conversations about God with various homeless people after he’s demanded I give them my money, and I have been asked to quiet down in movie theaters and plays because he didn’t understand what a whisper was. Halloween is the best holiday for us, and indeed for most parents of autistic kids, I think. There is nothing your child could do that would be too weird. Though he doesn’t eat any candy, Gus loves collecting it. It’s the perfect amount of human engagement for him: you say one phrase to people at the door, people admire you, you move on. (At least now he does. He used to storm their apartments and refuse to leave until he’d buzzed through every room.)
Last year, at thirteen, Gus was Maleficent, complete with flowing robes and horns. He knows she is a girl and does not care. She can transform into a dragon, so it’s all good. Henry, who dressed as a Corinthian or something (I never quite got this right, but we shopped all over for historical accuracy), was mortified that people were taking photos of his brother as he threw his head back and MWA-HA-HA-HA’ed at the top of his lungs. “Sweetheart,” I said as Henry attempted to render himself invisible, “this is why we live in New York.”
Modesty is also an entirely foreign concept to Gus. As someone who wouldn’t go to the bathroom in front of a dog, never mind another human being, I am rattled by a child who doesn’t understand the point of closing the door. Gus never notices that his pants are riding so low that his butt is showing, nor has he learned, even at fourteen, that when there’s company, it’s not perfectly fine to walk to the shower naked. Or, rather, he understands that he’s supposed to wear a towel, but only because I say so. He’s still unclear about where the towel’s supposed to go. Generally he slings it over his shoulders.
“Aren’t you embarrassed?” Henry says to me when we’re walking down the street and Gus is quietly quacking under his breath. Henry reminded me that for the past year Gus had been wanting to walk to school by himself, which to him seemed perfectly reasonable and to me seemed like inviting him to play his own personal game of Frogger.
“I mean, imagine if he was doing this while walking on his own. GUS, CUT IT OUT,” Henry shouts, for the hundredth time that day. When he’s feeling a bit more hopeful, Henry has a theory. “Imagine if thirty years from now we find out Gus was faking everything and that he was actually a British mastermind trying to infiltrate our family.”
* * *
There are endless studies on embarrassment. (And some are kind of fun: What happens when you ask a subject to stare at a variety of people in photos and then tell them that according to eye measurements, they’ve spent much more time than the average person staring at the people’s crotches? Hilarity ensues.) But in general, embarrassment is a social emotion: we feel embarrassed when something we do, or something someone else does, conflicts with our image of ourselves in front of a group of people. The key phrase here is “image of ourselves.” If one of the primary manifestations of autism is the inability to understand that other people have thoughts, feelings, emotions, and needs different from ours, then it makes sense that many aren’t self-conscious; they don’t have a sense of who they are in relation to other people. Certainly Gus doesn’t.
So what does a parent do? On the one hand, you try to control the most socially unacceptable behavior. “I only can touch myself in the privacy of my own room!” Gus has announced to me on several occasions, and while I take this as a hopeful sign that my message has sunk in, I also have to pray that he does not see this as an interesting conversation starter at a friend’s birthday party.
Then there are lots of other merely annoying or clueless behaviors that I haven’t been able to eliminate altogether, but have occasionally been able to put to good use. For example, for years I couldn’t get Gus to stop answering the phone; his need to connect with people far surpasses his ability to understand what real connection is. So he would race to answer, and I would then find him deep in discussion with various people I worked for, asking them where they lived, where they were going that night, and giving them directions on how to get there. But as time wore on most work people were emailing and texting, and it dawned on me
that the only people who used my home phone were telemarketers. Henry, whose entire life is devoted to pranks of one sort or another, convinced me: let Gus answer. Now, Gus patiently waits for that dead space or the recording to be finished until he reaches a live human. And that’s where the fun starts. “My mom is right here. What did you want to ask her? Where do you live? What train station is that near?” At first I felt guilty, but as Henry pointed out, “Telemarketers give you the gift of wasted time, so you’re just returning the favor.”
Lately I’ve been getting fewer and fewer telemarketer calls. I suspect there’s a “Do Not Call: Batshit-Crazy Kid at Home” list.
* * *
There are things worse than an autistic child who feels no embarrassment, as I found out recently. Much worse.
Gus and I were at a concert sponsored by Music for Autism, a fantastic organization that brings Broadway performers together to give hour-long concerts for kids on the spectrum. The hell with the kids; it is bliss for us parents. For an hour, we are not worrying that our kids’ behavior, expressed in socially questionable ways, will impede anyone else’s good time. Dancing in the aisles and singing at the top of your lungs is encouraged. In other words, at a Music for Autism concert, I am as free from embarrassment as Gus is.
At this respite from reality, performers were singing barnstormers from the Gloria Estefan musical On Your Feet! Gus was doing what he always wants to do, but usually can’t, except at these concerts: inching closer and closer to the singer in rapt wonder, until he was a foot away, dancing with her. The rhythm is going to get you—and you and you and you, and definitely Gus.
But then, there was this child. He was about Gus’s age, olive-skinned, handsome, and barely holding it together. He just kept repeating to his parents, over and over, “I’m sorry . . . I’m sorry . . . I’m sorry.”
The little guy had absolutely nothing to be sorry for—except, maybe, that he couldn’t stop repeating the phrase, and his parents couldn’t make him stop. Did he feel sorry for something he’d done, or was this pure echolalia? (Echolalia is the precise repetition of words and phrases, very common among those with ASD, that the person doesn’t always understand or mean.) I didn’t know. But I know that if, for whatever reason, he lived in a state where he was embarrassed by his behavior—unable to control it while being keenly aware that it was not normal—then, oh my God, I was the one who was sorry. I wanted to hug him and his parents. I wanted to give him a transfusion of Gus’s obliviousness. I wanted the singer to break into a rendition of Lady Gaga’s “Born This Way.”
* * *
Through pain there is growth. I think about this all the time. Do I want my son to feel self-conscious and embarrassed? I do. Yes. Gus does not yet have self-awareness, and embarrassment is part of self-awareness. It is an acknowledgment that you live in a world where people may think differently than you do. Shame humbles and shame teaches. One side of the no-shame equation is ruthlessness, and often success. But if you live on the side Gus does, the rainbows and unicorns and “what’s wrong with walking through a crowd naked” side of shamelessness, you never truly understand how others think or feel. I want him to understand the norm, even if ultimately he rejects it.
There are signs that things are changing—though incrementally. The other day I was wearing low-rise jeans, the bane of pudgy middle-aged women everywhere. I was bending down to clean something off the floor, and I guess I didn’t notice I was doing my best plumber’s impersonation. With a look of infinite compassion—and using the same gesture I have used on him a thousand times before—Gus came up behind me and tried to hike up my pants.
“That looks silly, Mommy,” he said as I rejoiced.
Seven
Go
“Guess what? We’re going to Alaska!”
Gus: “Is there rice pudding?”
Henry: “No.”
John: “How much?”
Why should I have thought this trip would be any different? That I would be greeted with cries of “YAY!” and “YOU’RE THE BEST MOM EVER!” and “IT’LL BE LIKE A SECOND HONEYMOON!”? OK, maybe that last one was a stretch. Actually, they all were.
I do not have a good history of travel with my family. At this point I don’t even think of these trips as adventure so much as anthropology, a chance to chronicle the character defects of the people closest to me. And yet my romance with family travel persists. This time it’ll be different. This time will be The One.
Always lingering in the background is my fondest wish: that Gus will become a fan of The New, or at least not its mortal enemy. It is all part of my alternative reality, where Gus lives in Normal Land. In Normal Land, I do not have to travel with a box of Cheerios in case somewhere, somehow, they run out. In Normal Land, my Gus is interested in sightseeing and talking to the natives, rather than, say, watching the buses arrive and depart from the hotel. In Normal Land, Gus enjoys eating more than five foods. He will look at a stranger as they shake hands. He will feel when his pants are falling down and pull them up himself. And mostly, he will not cry every afternoon because he is homesick—not for his family, who are in front of his face, but for his stuff. The bedroom curtains, with snakes and lions and giraffes and several animals I think the fabric designer just made up. The little monster trucks with the friction wheels, a sound that soothes him. His villain figures, his trains, his snow globes, and always his magic staff, a gift from Maleficent, which he will still, on occasion, use when he watches her in videos, reenacting her scenes and shouting her lines the same way I used to do when I went to midnight showings of The Rocky Horror Picture Show. These are the things he cries for. I have taken pictures of these things and put them on his computer, and when he’s feeling shakiest I show the pictures. Look! Everything’s still there, waiting for you! On vacation his daily tears are as predictable as a thunderstorm in the tropics. They go away quickly, and he’s all smiles again. But in Normal Land, Gus doesn’t wake up every morning and brightly announce how many days there are before we go back home.
* * *
We’ve never been big travelers. For the first six years of Henry’s and Gus’s lives, travel consisted of the occasional overnight to a beachy place I convinced myself they’d enjoy despite the fact that they’d cling to me like baby baboons if I took them in the water. Why was their mother committing the act of swimming? While the kids around me shrieked with joy, rooting in the sand and plunging into the water, Henry and Gus would be climbing up my legs in their effort to escape the sand under their feet. Their saucer eyes and quivering lips said, “What is this bottomless abyss of dirt and wet? It is hot; there are bugs; we are being sent here because we’ve done something very, very wrong.”
Plane travel was out of the question, partially because Gus couldn’t sit still, but mostly because I so resented other mothers who took their young kids on planes that I refused to join the She-Who-Is-Loathed-By-Everyone Club. I am certain that when history explains Brad and Angelina’s divorce, it will have nothing to do with another woman or booze, and everything to do with frequent airplane travel with six children.
Among my most vivid travel memories on a business trip was sitting next to a woman and her eighteen-month-old. Gus and Henry were about the same age, and so, missing them a bit, I started a game of peekaboo with the little guy. The mother, delighted to have a few minutes’ respite, proceeded to pound back the vodka tonics while her son menaced me with a root beer lollipop. He was determined to share, only he wanted to share it with my arm, again and again and again. I think we’ve established my policy about stickiness; I feel about sticky the way Donald Trump feels about the New York Times. You can imagine the scene with both mother and child when I finally confiscated the Hell Pop.
Not wanting to be that mom played a role, but so did my neurotic family. When Henry and Gus were six, I told John we were going to Disney World for the first time. John politely demurred. I think his exact words were “They steal your money and shove their bloody false American values down yo
ur throats. Is that what you want for your children?” I ended up taking only Henry. He loved the airport and plane; a beloved neighbor had just died, and he was convinced he saw Jerry sitting in the clouds. He loved the Polynesian hotel, too. The problem is, he loved it a little too much. He did not want to leave. It was not until I got to the park itself that I discovered there were two things Henry feared more than anything in the world: amusement park rides and people in character costumes. Thankfully, there was an app where you could track the movements of the characters around the park. People used this so that they could find Goofy and Donald Duck, but it was equally useful for avoiding them. The only other thing I remember from that ill-fated trip was my six-year-old son standing in front of Big Thunder Mountain Railroad shouting at random strangers, “DO NOT GO ON THIS RIDE. YOUR MOM WILL TELL YOU IT’S JUST A TRAIN, BUT SHE IS LYING. IT IS A ROLLER COASTER AND IT IS SCARY AND IT IS BAD.” Essentially I paid $2,000 to glide through It’s a Small World over and over. You know the little Maori child clutching what is supposed to be a boomerang in front of him? After scrutinizing it for three days I’m pretty sure it’s a huge penis, and the Disney animatronic designers were having a little private laugh for themselves.
I waited another five years before taking a trip with the four of us. I decided we should go to Arizona to drink in the raw beauty of Sedona while staying in a hotel so posh nobody could complain.
On a one-mile hike to the top of a vortex rock formation, John continually expounded on the dangers we were facing: sunstroke, rattlesnakes, scorpions, dehydration. I pointed out that a one-mile trail up a gentle well-traveled slope does not necessitate survivalist skills. “OK,” Henry says, “but in case we are abandoned and starving and we have to eat each other, I call Mom. She’s the largest.”
To Siri with Love Page 8
