A Letter to a Girl Who Gets Stared At
“Peach Ring Gummies”
by Kerri Kolensky
Dear Emily,
Do you remember the last time I took you into a store before the pandemic began? It was the middle of January, and Mom let you stay home from school because you had not fallen asleep until 5:00 a.m. I wanted to go to Target to get shampoo and conditioner and all of the other things that a college sophomore would need to prepare to move back into their dorm. Too stubborn to wait for Dad to come home and watch you, I took you with me.
Immediately, I regretted it. The second we walked into the store, you demanded peach rings. I will never understand why you are obsessed with peach rings. They are absolutely disgusting - the red and yellow colors are so artificial that no natural peach would ever come close to resembling them, let alone taste like them. I had to drag you by the wrist behind me to the aisles furthest back in the store for a bag of the awful circular gummies, then hand them to you one-by-one while trying not to get their sticky sugar coating on the products I was putting into the cart. While annoying, it wasn’t the worst part of the trip.
That was waiting in line at the cash register. You were being your usual hyperactive self - hissing through your tongue, rocking back and forth on the balls of your feet, and grabbing my face to ask me for more peach rings (“No, not right now”) and if we were going home soon (“Yes, but we have to pay for everything first. Like you do at the mini mart at school, remember?”) You weren’t what bothered me that day, Emily. It was the man standing in the line next to us. He would not take his eyes off of you, and then off of me. I could see his confused, astonished stare, trying to figure out why you couldn’t just stand in place. Why your speech was clipped and forced, why you had to hold my hand despite being only a few inches shorter than me.
It wasn’t the first time that I caught someone staring at you, but I had never seen anyone watch so unashamedly. Most people look away the second I so much as glance in their direction, and I watch their cheeks color red with embarrassment. It’s fine if they stare at you, they think you don’t know any better. Don’t know that they are silently judging you. Maybe you don’t, but I think you do.
Even after years of taking you out, the staring is never something I am fully prepared for. I forget it’s something that people do since I am used to your habits. When you changed schools, I started to meet more families with children like you. In all of their discussions about taking their own children out in public, being on the receiving line of staring doesn’t often come up. They go on and on about getting passes to cut the line at amusement parks, what restaurants serve food the quickest, and what dentists specialize in servicing special needs children and have anesthesiologists on site. But they never offer advice on how they deal with the public, on how they handle multiple pairs of eyes on them when their kid is just being themselves. About how to handle being associated with something that they can’t just hide or stop.
Do you remember the time that Mom took you to the ER, when you had Henoch-Schönlein purpura, the disorder that caused your legs to break out in a dark read, splotchy rash? The doctor treating you asked all the medical students to come into the room and see the rash. It was so rare that the doctor wanted the students to experience it. When I found out, it made me angry, seething in fact. What made it worse was that it was socially acceptable staring. No one would think these people were wrong for wanting to observe, for wanting to know more about a medical condition that they may encounter in their career. The up and coming doctors staring at your legs would never see any of the aftermath, of you not understanding why you could not ride the bus and go to school for two weeks, why none of your speech therapists could come over, or why you couldn’t play in the line of spruce trees in our backyard and paint your legs black with dirt, despite trying to explain it again and again.
They would never know that this infection was just a blip in your long issue of skin problems because of sunburn. They wouldn’t have to watch you scream in pain during oatmeal baths, specially prescribed by the pediatrician to try and relive the stinging. Ground oats clumped with room temperature water as we forced you to sit down. The ten to fifteen minutes you had to soak would haunt me. I had to leave after the first bath, because you cried and screamed so much that the redness of your face matched your legs. I didn’t want to touch you and make it worse. So I told you through tears that I was sorry. Sorry that you got a terrible sunburn. Sorry that you thought that I was torturing you to make you better, even though I love you more than words. Sorry that you would never understand any of it. Sorry that the doctors, that other people, felt like it was okay to stare at you.
The people who stare cannot even fathom what it is like to look after you. To have to check on you every fifteen minutes and make sure that you did not draw on another bedroom wall with a sharpie. To have to put spring locks on every door to avoid having a carpet stained by a bottle of hot pink nail polish that you decided to dump out. To have to worry about whether or not the doors are locked, because if they’re not, you might try to run into the neighbor’s backyard to look at their trellis of flowers without telling one of us.
Do you remember when you ran away from the dressing room in Kohl’s to get a chocolate bar? The store went on lockdown, and I heard announcements over the speaker system while I was rushing to get out of a dress in the changing room. While you were smearing chocolate bars all over your face, no one rushed to help you. They only waited for Mom to find you, voice hoarse from yelling your name and tears streaming down her face from both relief and fear. She told me later that finding you wasn’t the thing that most relieved her, it was getting away from the stares. She said that she couldn’t get you into the car fast enough, if only to know that she would never have to see this group of spectators again.
But there are always different groups of spectators. Autism has no off switch.
These spectators don’t get to ever see you like I do, Emily. They only notice you at your worst, and they must assume that you are like that all the time.
But you and I know better.
They don’t know how intelligent you are. When they stare at us, they hear your forced and awkward sounding speech, and assume that you must not know much about the world.
They only hear your clipped, sometimes difficult-to-decipher words, and assume that those words must express the depth of what you know. But you and I know that autism is so much more than verbal abilities. You are so much more than verbal abilities. You and I know that you knew the whole alphabet before your twin, and that you could match the animals to the sounds that they made years before you would utter your first word. You and I know that you can read any letter that I ask you to, and that you can recite all the words to the Pledge of Allegiance. You are funny and fresh, and the most observant out of all of our siblings. You know where we are going based on what exit we take on the highway, and you can recall the names of people you have not seen in years. You know exactly how to trick your babysitters into getting an extra cookie, and you play the role of cashier at the school’s mini mart. You are so much more than what eyes can only see for a few minutes on a store line.
They don’t know that “Do They Know it’s Christmas” is your favorite Christmas song - I and the rest of our household have to endure it for hours on end. You also love Nat King Cole, oddly enough. Any other time of the year you would hate to have to listen to his music- it would be too slow for your tastes. Christmas blankets all of your usual dislikes and temper tantrums. That white-gold light strands are magic for you. You can stare at our Christmas tree for minutes, but to me they are hours, since getting you to sit still for longer than five minutes is nothing short of a miracle. You look at the mismatched, hand drawn ornaments, wooden cranberry strands, and white lights, and your face adopts a kind of peace I don’t see on you anywhere else. You have wreaked havoc on everything else in our house- you throw away and ruin countless tubes of toothpaste and medicines, but you’ve never touched the Christmas tree. Maybe it is the one thing that is sacred to you. Sometimes, if I’m quiet and don’t obscure your vision of the tree, you let me sit with you on the complete opposite end of the couch. When I sit with you, I can’t help but wonder why you can’t bring this calm into the outside world.
The people who stare would never know this about you, Emily. They only see a blanket of anxiety, or mischief, or worry. All the things that people would expect to see in someone with autism.
Taking you out is an act of absorption, of taking the human self-consciousness that you lack and putting it on myself. It is also an act of patience and disappointment, of realizing that there are people that will never understand disability, or that it is simply rude to stare. I’m still not a willing participant in taking you out, and I don’t know if I ever will be. Some days I just want to blend into the rest of society, and that means leaving you out of it. I’m sorry for that, for feeling like I have to hide you, for your sake and mine.
But taking you out is also an act of community. Sometimes I run into some of the people that I’ve met through your school, and I see them struggle with their own children while the public unashamedly looks on. I try not to watch them, but even I catch myself doing it. When I see them again, we don’t often talk about what happened. There’s not much to say. Each person has to figure out how to deal with the stares for themselves, and I don’t think it’s something that anyone fully adapts to. There’s a silent acceptance to this part of autism, of having a family member with special needs. The rest of the world will always want to know more about our reality but would rather watch than take part in it. We get stared at in solitude, but there is comfort in knowing that we are all subjected to the looks at any point that we take you and other people like you out into the world. There are also people who know about the community, whether they’re directly affected or not. If you’re being particularly vocal and I care enough to look around, sometimes I notice a pair of kind eyes, a nod of the head, and a knowing smile. They reassure me that it is okay for you to be you, that the rest of the world will catch up and get over it eventually. Maybe not all of them, but enough.
For now, we’ll keep going to the store and waiting in line, and we’ll keep having an audience. I’ll keep giving you disgusting peach rings and remembering all of the wonderful things about you. The things that the people who stare don’t get the privilege of seeing.
Your sister,
Kerri