I wish that boy’s head came equipped with a crystal ball
, I think as I stand at the Starbucks counter, waiting for my iced latte. I have just dropped my sons, Nate and Thomas, off at my sister’s. Now I´m headed for a quick fix before we kick-start our Christmas cookie baking, a joint effort designed to save time and money, neither of which I am convinced has occurred in the past. At least Thomas is occupied at his current favorite place while I get a holiday task checked off the list. We will be a few weeks ahead of schedule this year, which is great because I am behind on just about everything else in my life. I just finished grading forty papers this morning and have forty source summaries coming in on Tuesday, followed by forty research paper drafts just before forty final papers a week later. Coffee is just what I need right now. I would take it intravenously if that were an option.
And then there he is, sitting at one of the tables in the café, hunched over an iPad. A boy wearing headphones and a white turtleneck, the telltale signs of puberty dotting his pale face. He rocks back and forth and squeals occasionally, clapping his hands before touching his mother’s arm. “Mom. Mom,” he repeats even after he has her attention. “Mom. This is one of my favorite features, Mom,” he says, touching the screen. His touch is deliberate, careful. He taps the screen and then retracts his hand back up near his chin, index finger still pointing as if he is anticipating something going wrong just as much as he is anticipating something wonderful following his gesture.
His mother, an older woman who takes sips from her sleeved coffee cup slowly in the intervals before it is time to turn the pages of a newspaper, does not look up. It is as if she has heard this line a thousand times today, or in the last hour. “Yes,” she says. “Lower your voice a bit. We are in public.” She emphasizes the last word like it is a clue, a secret handshake needed to remain in the realm of the real world where she feels this boy should exist right now.
“Mom. I was surprised when I found this feature. I didn’t know I had this feature. It is one of my favorite features.” He touches the screen and squeals again, a bit louder this time. His hand goes to his mouth, flaps in the air, then goes back to the screen. “Mom. It really is a great feature. Mom.”
“I am happy you are excited, but you must lower your voice. This is a public place and that is not your public voice.” Again, she emphasizes the word public as if it is a badge of honor or a disease to conquer, as if it is a mountain they have climbed a thousand times since he was two years old. Standing at the top, she looks down and sees no time for celebratory squealing and hand flapping. Not in public. These are not the behaviors that got them where they are today, able to sit in a Starbucks café engaged in parallel reading among a world of strangers who do not notice anything different about this teenage boy in a white turtleneck. She is right, no one notices. Except me—-or anyone who has a child with autism. We can pick one another out in a crowd as if we are recognizing our own children. We find each other like anorexics or suicide survivors. We have a language. We have battle scars that no one else recognizes.
Like every time I find another parent of an autistic child, I want to establish a connection. I want to squeal and flap my hands over this wonderful feature I have discovered—-the ability to sit still in a crowded restaurant and engaged in appropriate activity. This ability to blend in. I want to ask his parents a thousand questions, explore his hidden features and know the recipe for his success. I want the secret ingredient that has allowed him this achievement. I assume it is two parts luck of the draw--the same hand of fate that allows most parents to have children who are not melting down under fluorescent lights or rocking back and forth in disconnect with the rest of society--and one part hard work and determination by all involved. He has probably logged thousands of hours of ABA therapy. I want to ask his parents if he is on any medication. If he is in a mainstream or autistic support classroom at school. If he was always verbal. If he has any food aversions. If they have any suggestions for me, or stories they want to share. I want to drink this family like a cup of coffee.
The young man’s father is at the counter next to me, waiting for his beverage. I turn to him, ready to cross the invisible line between us, to reveal myself not as someone who would not understand. Not one of the many unfriendly faces lurking in every public place, waiting to judge with scornful eyes and that exaggerated sigh that marks the enemy. But instead as a friend, a member of the club of people who get it, who sympathize, who have an additional built-in feature—-compassion from having begun to climb that same mountain. Thomas and I are years behind this family on the trek and I want to ask the path to the shortcut if there is one so that Thomas and I can take that route too, so that when he is old enough to have acne, he will sit quietly in a Starbucks instead of pacing back and forth in front of the counter at warp speed, holding his shirt up and laughing at something I cannot see.
What I see in the father’s eyes explains to me why this boy has autism. The man is obviously at a loss when confronted with what may potentially prove to be a social interaction. I am guessing he is a professor or medical doctor of some sort. I am fairly certain it is the former and is struggling to read my facial cues to the extent that I am making him uncomfortable with my beseeching eyes. He’s on the spectrum too, I think.
“Here you go,” the barista says as she sets his drink on the counter. “Have a great day!” she chimes.
He looks not confused, but totally unconvinced that she means what she says. “Yes,” he answers and turns toward his wife and son.
I get my latte and begin the drive back to my own life.
Every time I see an autistic child in public, I am taken back to the early days of Thomas’s diagnosis. I had left him at home with Lee so that I could attend Nate’s kindergarten Christmas musical. I remember more than anything wanting to pay attention to Nate, but being unable. At the end of the front line, nearly directly in front of me on the left side of the stage, a boy on the spectrum is singing the songs. I immediately recognize him as on the spectrum, but these are the early days of autism for me and I know so little. What I think of him at the time is completely different than what I would think if I saw this same child today, and every time I remember this incident, I am sorry for the thoughts I had that day.
The boy is chubby and happy. He rocks back and forth to the beat as he moves his head in a Stevie Wonder fashion, turning his face toward the lights above while he crosses his fingers. All of them. With his left hand, he takes the middle finger of his right hand and crosses it over the index finger. Then he takes his ring finger and crosses it over his pinkie. With his right hand, the fingers two Xs that he holds up to admire, he reaches over and does the same thing to his left. Middle over index, ring over pinkie. He never misses a beat of the song. He uncrosses them and starts over. I watch him sway back and forth, occasionally turning toward someone who might be prompting him off stage, then back to the music and the crowd. I can’t stop watching him.
My sister, Ronnie, is sitting beside me and I feel her looking at me. She takes some pictures of Nate, knowing I will want to see them later. Part of the reason I am here without Thomas is to devote some attention to Nate, who has certainly been feeling the effects of divorce and autism lately, but I can’t look away from the boy, examining his every feature: the chubby face, the Velcro shoes, the obvious age difference between him and the other kids. I am filled with hope, but it is hope of the wrong kind. I hope Thomas isn’t that bad off. I hope he is higher functioning. I hope it’s not so obvious to everyone that Thomas is autistic when he is in kindergarten…
After the show, I meet Nate in the crowded hallway. Parents swarm their children to tell them what a great job they did during the performance. Little girls wear their best frilly dresses and boys reluctantly stand with shirts tucked in, posing for pictures. The chubby autistic boy approaches the corner we are huddled in. He is walking beside his mother and his teacher. I cannot help but listen to their conversation.
“You did such a great job, Anthony,” his mother says. I noticed their striking resemblance to one another, both heavy set, both with dark hair, the same walk.
“He did do wonderful!” the teacher chimes, almost automatically.
“I am so proud of you,” the mother says. Her eyes are teary.
The boy smiles and keeps walking, eyes straight ahead, fingers crossing into their Xs, his head still moving in a kind of piano player rhythm. He does not answer.
“Anthony, look at Mommy,” she says, turning his face to hers by holding his chin. Her eyes attempt to chase his for a second and then she gives up on gaining eye contact. It all happens in a fraction of a second. None of it means anything to anyone. These two are alone in the world ever so briefly; the hallway isn’t crowded, the sun hasn’t gone down, the snow isn’t accumulating quickly outside, the crowded parking lot doesn’t matter, the drive home and the interruption in the nightly routine are irrelevant. There is only this moment. “You did wonderful,” the mother repeats again.
“Yes,” Anthony says.
My heart splits in my chest. I feel a kind of a pang I will later come to recognize as hurt specific to autism, an unmatched feeling of loss, guilt, sadness and pride all rolled into one. I am struck by the fact that everyone is lying to this boy. He didn’t do wonderful, he was too autistic
, I think. I ache because he didn’t look like all of the other kindergartners, because I am fairly certain he is in at least first grade, because in order for him to stand there, he had to have so much help from off stage, because they put him on the end of the line for that very reason, because he wouldn’t, he won’t, he can’t stop crossing his damned fingers. I hurt because he is beautiful and I want more than anything to hug him. Even then I realize that I want to hug him out of pure selfishness. I want to free myself of the thought that Thomas could possibly be anything like this child in a few years.
The image of this boy rocking back and forth under the stage lights will come to haunt me for years. I see him every time Thomas is on stage for one of the many pre-school and elementary school performances or special family events at school. I shudder at my own ignorance only six or seven years ago, at how little I knew of autism or Thomas’s future, of how wrong I was. Today I would be ecstatic if Thomas could stand in the same place for that long with that little assistance from off stage, if all he did was rock and cross his fingers.
The first end of school year performance in preschool, the teachers neglected to even have Thomas practice with the class. It upset him too much, they said and they didn’t want to embarrass him by putting him in front of all the other parents. And these were two of the best teachers I have ever encountered, this was at a private preschool at the college where I now teach part-time. This was from the most sensitive of educators where Thomas was the only autistic child. Maybe that is why it all came as such a shock. I remember I had instructed his TSS to just have him “do what he could,” that I would not be upset if he had to abandon the performance or if she had to “hand over hand,” the movements that were to accompany the songs. I left the school to grab a coffee or a quick run at the gym, I can’t remember which, and when I returned for the show, his TSS told me that he wasn’t performing. I packed his mini backpack and left.
His TSS had told the teachers how upset I was. One of them later called me to apologize. Her son is also autistic and now grown and I guess she thought she was doing what was best for Thomas. I have never fully believed that in part he wasn’t standing up there with his four-year-old classmates so that he wouldn’t “ruin” the show for the other parents. That show marked the first time I was full of hatred for parents of “normals” who know nothing about the pride I would have felt to see him up there, quirks and all. It was also the first time I realized what an ignorant ass I had been for thinking the chubby boy in Nate’s school Christmas show did anything but wonderful that day.
I will think of that child during every single performance Thomas has for the rest of his life. So far there have been too many to count. He was there the next year in preschool, and the year after that. The next year he did one song and announced he was done. The following year, he did the whole show with his TSS (Rose) hand over handing every gesture in a carefully choreographed routine. In kindergarten he stood on a real stage in the high school auditorium, not unlike the one where I had seen Anthony do his wonderfully independent Christmas performance. Rose prompted most of the motions while Thomas bounced excitedly at the far end of the stage where they could have the most room for her to assist him.
“I went to my window,” a little girl said into the microphone.
“To see what was the…” said the next boy.
“MATTER!” Thomas chimes into the mic. Rose was beaming.
One of my most treasured photos was taken directly after that show. Thomas has pushed my hair away from my face and is staring into my eyes. I know he is proud of himself. I can tell by the picture that he knows the level of his accomplishment and how much it means to me. “Thomas, you did wonderful! I am so proud of you,” I said. I could not have meant it more.
I think of the boy from Starbucks again while Eric and I approach Toys R Us to start our Christmas shopping only a few weeks after I saw him examining the new feature on his iPad. Thomas and Nate are with their father for their overnight visit and Eric and I need to get as much shopping done as we can. “No Target. No Target,” I hear a voice saying in the parking lot.
“Yes, ‘no Target.’ We are going to this store instead. Toys R Us,” a woman answers.
“And a different Dairy Queen,” the boy says. He is about ten years old, heavy set, with dirty blonde hair and that look in his eye that some would call “vacant,” but that I have come to know as “too present.”
“Your shoe is untied,” the woman who I know is his mother says. She points at the boy’s right foot.
“No Target,” he repeats. I know what he is doing. I know to the extent that it stops me in my tracks, to the extent that it hurts me to my core. He is trying to prepare himself to enter Toys R US without getting upset that it is not Target. He is preparing himself for an uphill battle. I know it the way I know that his mother does not understand him. She looks tired. She looks unconcerned and irritated. She is nothing like the professor couple in Starbucks. And this boy’s features are nothing like the slightly older boy with the acne and the turtleneck. Just as I wished Thomas could be like that first boy, I am glad he is not like this one, a thought for which I immediately feel guilty. This is what we do. We immediately measure our autistic children against each other. We search for comparisons and then we dread finding similarities. We hurt when we find them where we do not want them to exist.
“That shoe right there,” the woman says. She points again. It is our first snowfall of the season and traffic is a nightmare. The stores are crowded and the energy is not positive as I enter Toys R Us, still listening for that boy’s voice as I start to search the movie section for any of Thomas’s current favorites: Spongebob, Wubzy, or anything else that might catch my eye. I cannot concentrate on anything but waiting to hear him, to know if he made it into “Not-Target” okay. I am chanting for him inside. I want him to succeed. I want him to find something that he likes and be so captivated that he is happy this is not Target. Worse, I want him to get to go to Target today and his regular Dairy Queen.
And then I hear him. “Mom! Are we done yet, Mom?” His voice is edging on frantic, but he is holding it together for now. I know what’s coming. I cannot look through the Level 2 I Can Read books, though I am desperate for a distraction.
His mother’s voice does not respond. “Mom! Are we done? Mom? Are we done?” The voice is a scream now. He says the same phrase fifteen or twenty more times, each time louder. In the span of about three minutes he has reached his peak. He is in a panic. Not-Target is full of his voice, his sound, his presence. Everyone there knows that he does not want to be here. That he wants to leave. I feel the crowd respond with a tension I can almost taste. The air is tighter. Over and over the boy pleads to leave. I never hear his mother answer him, but I can hear eyes rolling and annoyance. My chest tightens.
“He wants to go, Eric. He just wants to go,” I say. “Why won’t she just answer him? All she needs to say is ‘not yet,’ and he will be okay.”
“I know, Baby,” Eric says. “What else did you want to look for?” He is trying to distract me, which he knows is impossible. I can no more disengage from the sound of that voice than I can stop thinking about Thomas when he is with his father. I have gotten past the need to take sedatives in order to sleep when he is gone, but I still turn the ringer on my phone up to high and I still have nightmares most nights he is with his father.
“Why won’t she just answer him?” I am getting angrier the louder his voice gets, and by this point I am sure no one else is shopping. They are just waiting for the boy to leave Not-Target so that their magical holiday experiences can continue. I have made up a thousand scenarios. I imagine that his mother is practicing “planned ignoring,” just like her BSC told her to do. I tell myself that what she is doing is the best for him in the long run, but I do not believe myself. I know she is ignoring him because she doesn’t care. Maybe that’s the same thing—-maybe that will have the same effect in the grand scheme of things. Maybe…
And then the screaming stops. He is gone. I will never know what happened. I do know that I am thankful Thomas can go in public and remain happy most of the time. That I have learned how to talk to him so that I can de-escalate him without bribery or false hope. I can find in his words the meaning he cannot articulate. I know that he is scared of the uncertain and that he needs me to tell him what will come next. That he needs to know how long things will last sometime. Even if that answer is twenty-seven years until we go to Target again, it beats the hell out of not knowing.
Just as the boy in Starbucks made me jealous with his advanced articulation feature, this boy made me grateful that Thomas is able to tolerate public places without melting down most of the time. Neither is a feeling I am particularly proud of. Both are feelings I will experience again and again throughout this journey. The dichotomy has become one of my features. I will be surprised every time I find it.