by Tara Cohen
My friend Laura was recently at one of those big-box-nothing-under-100-pounds-can’t-escape-for-less-than-100-dollars behemoth warehouse stores with her husband and daughter, and she thought of me. Now, Laura, being the conservationist-social activist-cloth-diapering-vegetarian that she is, is not a huge fan of oversized portions of toxic plastic crap, so it’s worth noting that they were picking up bulk consumables like kitty litter and rice, not single-use plastics and disposable diapers. As they perused the streets of this indoor mecca o’ stuff, Laura loaded their cart with a super-mega-ultra-jumbo bag of cat food and noticed a woman staring at her with something like disapproval on her face.
Now, me, I’m used to strangers’ stares because children with autism, like my son Will, do tend to become the main attraction when they’re upset. I should charge for tickets to “The Will Show” for as long as some people stare at us. When that child is upset, throwing things, hitting, full-body-flailing in the stroller, crying, or all of the above (yes, that happens, and often), people shake their heads at us. They do the “Wow. That’s one bratty kid” double eyebrow raise. They roll their eyes, cluck their tongues, whisper their disapproval to each other, and stare at me with their appalled “Well, I never” expressions when I don’t look adequately humiliated. But we are living in the year 2 A.D. (that’s “After Diagnosis”) in my house, and I’ve had enough time to learn that my kid absolutely has to come first, and explaining ourselves to strangers takes a last-row-of-a-15-passenger-van type of back seat to taking care of his needs.
Living, as I said, in 2 A.D., I have come to recognize that when people have an obvious reaction to Will, their responses tend to fall into one of three categories. The first type is the hardest for me to handle. Those responses can be negative, judgmental, or both. Equally common is the empathetic, well-intentioned response. While these can be a sympathetic smile or a please-go-ahead-of-me gesture, they can also be coupled with some inappropriate action, comment, or assumption. Thus, these interactions are also challenging. And then there’s the third, and rarest response: Kindness. These are the double-prize-in-your-Cracker-Jacks® awesome moments, and I unfortunately don’t have them often. Now, I truly doubt that most members of the general public are grossly uneducated or rude or uncaring or just plain mean. I think most people simply don’t know what they’re seeing, and hence their responses are based on assumptions, not reality. That’s why I’m grouping the responses, not the people. I try to react as kindly as possible regardless of people’s responses to us so that, perhaps, the next time they see a child behaving like Will, they will stop and consider that maybe he’s not just a bratty kid whose mom caters to his every desire.
One thing kids with autism need is security — a constant feeling of security. Will often creates that for himself by focusing his attention on an object, which helps him shut out the stimulation surrounding him. In daily life, this typically means that when we are in the grocery store, he’ll see something small, say, a ruler, and he’ll flap his arms or turn his hands or bounce or do some combination of them all, often while vocalizing in a non-distinct way. I’ll stop, and offer him my hand, which he’ll direct toward the object. Children with autism often don’t point their fingers, and, as Will is pre-verbal, this is his way of showing me what he wants. If the ruler is in a display with lots of other rulers, he may want a very specific one. And I don’t mean he wants a blue one as opposed to a red one. I mean he wants the third blue one from the left, second back on the rack. And he must have THAT one. Now, I’ve gotten pretty good at reading him, but sometimes it takes me a while to find exactly what he needs. And for someone who cannot communicate clearly to want something so specific, the situation can be very frustrating for both of us.
So one day Will and I were shopping and he was very focused on this overpriced grow-with-water plastic insect set he’d worked incredibly hard to request from me. It had enabled him to stay calm throughout the store, and he was happily flipping it over and examining its various angles. At the checkout, we had my dreaded moment: the handoff. “OK, Will. Mommy has to pay for the bugs if you want to take them home,” I told him. “I will give them RIGHT BACK. I promise.” I asked the woman to be ready to scan our little family of caterpillars and moths quickly, and handed it over. Will screamed and flung his head back and forth, banging his little fists and hitting at me. I handed the toy right back, and hugged him, telling him I knew it was hard and that he was going to be just fine. As I looked up, the checker said, “Wow. That was a disproportionate response, don’t you think?” Even as I answered her, I registered how odd it was that she spoke so formally while negatively judging my son. “No. Not really. I actually think that was pretty good,” I said, and I smiled.
I don’t need to justify Will’s behavior to everyone, and I wasn’t in the mood to give an autism Public Service Announcement to the checker. Sometimes I’m up for educating the public with a teaching moment worthy of sound effects and an NBC-style shooting-star graphic, and other times I just want to get our freaking milk and our dandruff shampoo and go home. I thought our little exchange was over, but the woman said, “Really? You don’t think so?” her eyebrows receding into her shallow forehead as she gave us a look that clearly said (in her oddly formal yet uneducated voice inside my head), “Ooooohkay. If you wanna have a bratty kid, I guess that’s your prerogative.” I smiled. I took a deep breath. Dear Abby would be proud. I looked at her as I continued to hold Will’s head to my chest over the side of the cart, rubbing his back, and said, “Will has autism, and it is hard for him to understand why I would take something away, even if I’m going to give it ba–” She cut me off dismissively with a comment and a disgusted look, the way people do who often fall into the “autism-is-the-term-du-jour-for-bratty-kids” camp: “Oh! Say no more. I understand.” And while I thought, “No, you obviously don’t,” I politely said, “Children with autism sometimes have a hard time in certain settings — bright or loud places, for example. Having something to hold onto helps him feel better. And he’ll be fine once we get to our car.” Cue shooting star graphic.
Now, most people aren’t quite so rude or so vocal in their judgments. In fact, I think most people either don’t give us a second thought or, if they do, they just think we’re having a really, really bad “toddler day.” I remember waiting with Will at the pharmacy one day (around 3 months A.D.). I’d paid the clerk, only to have the pharmacist say, “Ooops, sorry! That’ll be just another minute.” Now, this would not normally be a big deal, except that Will was having a tough visit to the store. I had him in a shopping cart which I’d been pushing at arm’s length, trying to avoid having him kick my then-pregnant belly while he fussed. As the minutes ticked by, he went into a full-body meltdown that seemed to have something to do with the fluorescent lights. Having already paid, I was more or less stuck waiting. So I did my best to talk Will through the wait, even singing some of our silly songs (Yes, I sing in public, and not well, either.). He started to calm down a bit, but was still crying when I turned to answer a question from the clerk. As I turned back, a woman with her own child in a cart approached, saying, “Oh, is it naptime?” as she reached out her hand. I could not get the words, “PLEASE don’t touch my son!” out fast enough, and, her hand on his back, Will went into complete hysterics. The woman recoiled as though he’d bitten her, and I apologized, saying, “I’m sorry. My son has autism, and he really, really doesn’t like strangers touching him. I appreciate you trying to help.”
I spent the next few minutes with Will’s head pressed sideways to my chest from the side of the cart, one hand over his exposed ear, the other holding him to me and rubbing his back as he squeezed his eyes shut, effectively shutting out the world which, for him, was simply overwhelming at that moment. When he stopped flailing and wasn’t going to kick my extremely protruding belly anymore, I moved to the front of the cart, having finally grabbed our prescription, and walked out to the car, pushing the cart with my elbows as I continued to shelter him with my hands and chest.
On the car ride home, Will shifted from panicked to placid while I went from mortified and worried to hot-mad livid and really conflicted. This was the first time someone had blatantly interfered with my management of one of Will’s outbursts, and I was just learning to handle them as it was. Here this woman had tried to help, but her method of doing it was, in my eyes, absolutely idiotic, seeing as most toddlers (regardless of whether they have special needs) don’t like strangers touching them. Why had I apologized to this woman?, I wondered. She was the one who touched my child! Don’t we all learn in Kindergarten to keep our hands to ourselves?! Didn’t I have a full enough plate being third-trimester-please-let-this-kid-be-born-soon pregnant and hormonal while caring for my recently diagnosed, non-verbal, sensory-overloaded special-needs toddler? And shouldn’t she, as a mom, know better than to touch some kid who doesn’t know her? When is it OK to touch a child you don’t know?
Overall, I’d give this woman a 9 on the Good-Intentions Rating Scale, but maybe a 3 for execution (and that’s only because she backed off when asked to). Over time, I’ve gotten a lot better at heading off the do-gooders. Better yet, I’ve learned how to appreciatively accept help while keeping people at arm’s length so I can manage Will and juggle Julia.
Last December I was back at the scene of the pharmacy fiasco, so we’re talking 11 months A.D., and, as I certainly wouldn’t want to name names… we’ll call the store “BullsEye.” Will was in his absolute worst, jumping-out-of-his-skin, screaming-crying, arm-flailing, hysterical mode in the double stroller with Julia, then just under seven months old. It had been a very long time since Will had had such an outburst at “BullsEye,” which is usually a pretty easy place for us to go. Whatever set him off that day, I honestly couldn’t say, but he was in rare form. I got down on my knees in front of the stroller so I could face him, hold his hands, and try to coach him through the tantrum. Will kicked at me and smacked my face so hard my glasses flew about five feet away. As I picked up my glasses and rubbed my cheek, my eyes watering, Will continued to flail his body enough that he hit Julia in the face, and, of course, she began to scream.
So there I was, two screaming children, feeling rather like crying myself, when a “BullsEye” employee approached us, stopping about three feet short of the danger zone. I lifted Julia out of her seat to make sure she was alright and soothe her, and the man asked, “Are you ok?” in the most genuinely concerned, kindest tone of voice. I thanked him and said we would be alright because, after all, what could he possibly do for me? Most people take this as a great excuse to exit, stage left, and quickly. But he stayed, saying, “Are you sure? I’d really like to help you. Is there anything at all that I can do?” Bouncing Julia slightly, I took a good look at this young man and realized that he would have said the same thing regardless of whether he was at work or off at a park. He wasn’t angling for an Employee-of-the-Month plaque. He was selflessly motivated to help me, and that alone made me want to cry for a whole different reason.
I was reminded of this incident last month when, during a very similar scene at an office-supply store, a woman approached us at the checkout. While I dug out my wallet, she saved a display of must-buy-this-now-before-the-Christmas-rush, won’t-break-for-at-least-one-whole-week, imported-mini-cheap-tronics that Will was attempting to knock over in his frustration. I thanked her, and she said, “Oh, I have a three-year-old. I know how it is,” and smiled, even as he continued to scream, asking his name and whether she could help me at all. I thanked her. I told her that Will had autism and that he was unlikely to respond to her efforts, but that we truly appreciated her gesture. She kept a polite distance but smiled at Will and waved goodbye to him. Outside, I loaded my sobbing child into the car, hugging him for his efforts and assuring him that we were all done. I saw the woman walk to her car, and I put my hand to my chest and then raised it to her in a gesture of gratitude. She smiled.
It’s not often that people offer to help when Will is that upset. Usually they are so sure that they are witnessing an I-want-that-toy-you’re-so-mean-undisciplined-spoiled-brat tantrum that they are just glad not to be in my shoes. Back at “BullsEye” last week, Will threw a hanger (yes, he carries hangers, and no, I still don’t know why) and I got the “Hoooo baby, that’s one bratty kid” look from at least three directions at once. I soothed my son, and I thought of Laura and her trip to Mega-Shop-O-Rama-Land and the kitty litter lady.
The woman had judged Laura’s situation on face value: Small woman lugging gigantic bag while able-bodied young husband stands idly by. She tsk’ed her way past them, judging Laura and Henry for failing to fit into the neat little check-boxes of her gender-role stereotypes. And, in that moment, Laura stood in my oh-so-practical, heels-and-grocery-stores-do-not-mix, socially misjudged shoes. She thought (and yes, I paraphrase, as I am not clairvoyant nor do I have any memory for direct quotes), “Do I find a way to let her overhear me saying, ‘Gee, Honey, I’ll be so glad when you’re totally healed from your surgery and you can do the lifting again!’ or do I just let her judge us because it shouldn’t matter what some random woman at the Plastic-Mart thinks of us?” The sting of misjudgment stole over Laura, quickly replaced by righteous indignation: “Well, wait! Who is she to judge us? What if I LIKE to do the lifting? Do we need to put my husband’s arm in a sling to make her comfortable?”
True to form, though, Laura’s indignation did not last long. It was replaced with compassion and gratitude. Compassion for me and my son, my husband and my daughter. Gratitude for her momentarily misperceived husband, because, no matter what anyone at Bulk-Stuff-Ville thinks, she could not have asked for a sweeter, more diligent husband who changes diapers, kills bugs, retrieves vases from high shelves, and, most certainly lifts heavy objects for her. She pondered how often our little family is misjudged and how strangers think of us as bad parents whose bratty children are in need of serious discipline when really we do little else all day but parent and teach and coach and try try try to achieve some minor sense of normalcy and happiness for our kids. And so I know that when Laura sees a screaming child in the store, she doesn’t reach out to touch him. She doesn’t write the mom off as a phenomenally pitiful parent. She smiles. She smiles, she picks up her cell, she calls me, and she asks if, today, there is anything she can do to help.