Wednesday, September 18, 2013



Yesterday, on the way from picking up the kids from their schools, I saw something odd. As I turned, I saw a young man sitting on the sidewalk, obviously not well. The left turn I was making is the site of frequent collisions and bad accidents, and my first thought was he was a pedestrian who had been hit. He was sitting with his knees up to his chest, and his shoes were off. They were askew in the road, and I was unable to avoid one with my tires unless I wanted to chance going into oncoming traffic near a sharp curve. As I cringed while I thumped over his one shoe I could not avoid, I saw a van or SUV--I didn’t notice and I also kind of classify them as the same in my head anyway because, to most intents and purposes SUVs are only what people who want to feel like they don’t drive a minivan [but who need a minivan] choose—about 50-75 feet up with its hazards on. I decided that I’d pull into the parking lot adjacent to the spot where the young man was still sitting and make sure he didn’t need any help, such as a call to 911.

“Sir, are you alright?” I called. He looked up at me briefly, then put his head down and away from me. Hmmm, I thought. He didn’t appear badly injured, and certainly not as maimed as as one would be to cause their shoes to be flung off his feet. I realized he’d thrown his shoes into the road. Hmmm.

My children were asking me what was going on, what was I doing, and I replied, “I just want to make sure no one needs help. We’ll be going in a moment. Nothing’s wrong with me, us, or the car.”

I tried once more to ask the man, who could have been anywhere from 19 – early 30s, if he was okay, from inside my locked car with the window down. He didn’t respond at all and kept his gaze away from me. He appeared physically typical, no signs of Down Syndrome or other recognizable disability. But, he didn’t look at me. Hmmm. I began to formulate a well-educated hunch as to what might be going on. My kids, who usually don’t stop talking ever, no matter what, were silent as church mice, fascinated, probably. A little scared, maybe. They’re used to their weird mom doing this kind of thing, though.

As this was happening, the front door of the minivan/SUV up ahead opened and a woman came out, walking in our direction. I watched her and noticed she and the man sitting definitely resembled each other. As she approached, she stepped into the road to kick his shoes towards him in a weary way. “Ma’am, is this your son?” She looked over at me, and replied he was her son. “Is he hurt?” She shook her head no.

I thought for a moment, but only a beat, and said, “Is he learning disabled?” She nodded. I glanced at him, still there, head down, and decided to say it. “Is your son autistic?”  She met my eyes, and I could see the weight of the world on her, a woman clearly in at least middle age, as she said, yes he is autistic.

I went on to ask if she needed help, meaning it more in the immediate sense as it pertained to her son on the side of the road, but her answer broke my heart. “Oh, I need all kinds of help, and I don’t get it. We have an appointment at Duke next week. Maybe that will help. He’s okay right now, just, probably ‘shamed that you see him like this. See, he is mad at me because I took away his tea that he wouldn’t stop drinking because I was worried he’d have to go to the bathroom too much, and he just got out of the car on me.” I smiled at her and said for her to not worry about me or anyone else that doesn’t matter and to just go tend to her son, and wished her much luck, because, really, I didn’t know what else to say or have the wherewithal to help her or her family in any meaningful way, then I backed out of the space and took my kids on our way. I explained to them what was happening, and they understood pretty well, to varying degrees depending on their ages.

I knew I could have been making a big mistake, or insulting her and her son with my questions, but I also had some reasons for asking. I have dear friends whose family deals with autism. Their eldest son, J, may be the one with the symptoms and who has to learn to live in this confusing/baffling world, but, truly, their whole family is affected to its core. They’re “lucky” enough to be able to devote the time and resources to give that child all the therapies and support possible, but it is, like any disability, only improvable to a certain extent. And, I am ecstatic to report that, in the past 6 or so years since beginning to diagnose J, he has progressed so well. The little boy that I felt guilty if I absolutely needed to talk to—because I could see the distress it caused him—now comes up to me and initiates conversations. Sure, they’re weird as hell, and I admit, I am terrified the entire time that I will mess up and not know when his joking about, say, monkeys in the tree outside his bedroom will all of a sudden not be joking and I will accidentally upset him when he switches to literal, or because I simply don’t know ‘the script’ of this conversation and how it goes (because most of what he says, he expects a very precise response and you mess up… then he might meltdown, and who knows how long that could last or what event that could even cause to stop in its tracks)—but I am in it to win it and there for the duration when he does talk to me. Because, for all his difficulties in understanding the world around him and the weird people in it who smile when they’re really sad or say sarcastic things that don’t make any sense, he is also clearly very smart, and deserves to be treated as such. Heck, even if he were slow, he deserves to be treated well.

So, back to my possibly intrusive question. I can’t tell you how many times my friend, J’s mom, has had to explain what’s up, usually in response to some form of, “What the hell is wrong with your kid? Why won’t he behave/leave my kid alone/give my kid space?” or something like that because, hey, stuff happens, and all us moms know if your child is going to act out, well, it’ll be in a public arena. A child who’s sensitive to stimuli or has less impulse control only does that more often. I know she’s, sadly, used to having to explain to people, but I also know it pains her. No amount of philosophical awareness that it’s not her/their fault makes it un-painful when, yet again, they’re in public and she feels that sting of humiliation. Surely, on some level, J feels it, too. It can’t help him when he’s already confused and tantrum-ing.

So, I ask. I’d far rather risk insulting someone who does have a typical child than force someone to feel that if I can help it. And anyway, you find me a completely typical child without any weird peccadilloes and I will eat my shoe. We all have ‘em. But, if we’re not autistic, we generally know how to cope, manage, blend in and cover them up when needed. To me, that means we’re also fully capable of empathy, and not being that a-hole who tsk-tsks at the parents who are probably doing far more than we must on any given day, who not only have the garden-variety worries and difficulties we all have, but also must turn on a dime at any moment for any reason (and often for one that’s completely unknowable) because one of the people they cherish most on earth can’t cope and function as well as everyone else expects. The degree of vigilance necessary… just thinking about it exhausts me. I can’t solve these people’s issues for them, but I can do my damndest to not aggravate them.

This post is darker and more reflective than I generally am, I know, but it’s a topic that means a lot to me. I dedicate this to D, T, Z, and most of all J. You all are the best of the best, and you all only deserve the best.

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