January 18, 2011
It’s Martin Luther King Day, day seven of what I’m considering to be “Holiday Vacation Part Two” (two half days, one snow day, a three-day weekend and a RAIN delay, are these kids EVER in school?), and once again Justin and I have opted to spend an hour at our local arcade. We have run out of things to do, as there are only so many times one can go to the mall, go bowling, or watch a half hour of the latest Disney movie. I like coming here because this is one place where Justin actually takes his time, carefully considering specific machines in which to put his quarters in, making the excursion last long enough that it seems worth it. At least this outing is relatively cheap, and will culminate with chocolate marshmallow fudge, a treat Justin’s mama probably enjoys more than he does.
I can tell he’s nearing the end of his stash, because I can hear his treasured silver obelisks clanking together plaintively at the bottom of his plastic bucket. He becomes more reckless as he runs out of loot, sometimes sliding a quarter into a slot and running off before I can even rescue his tickets. I keep a tight rein on him, particularly in places like this, where the background noise would overwhelm my calling him (assuming he’d listen), and the allure of spinning objects and flashing lights makes him more prone to darting away. I watch as he does his own version of a drive-by on a game I never really liked anyway, then track him as he darts off around the corner to play poker (yes, it’s fake, I haven’t smuggled him into Atlantic City, I’m not THAT desperate for something to do).
I round the bend just in time to see Justin staring at a large man in confusion, coin still in hand, clearly preventing this individual from choosing “stand” or “deal” as he blocks his access to what appears to be a royal flush. The gentleman in question is obviously distressed by my son’s attempt to usurp his machine, leans into him and yells “YOU MADE A MISTAKE YOUNG MAN! YOU WERE WRONG!”, and in the moment after my heart unclenches I am able to assess the situation, and realize Justin’s not in any imminent danger. The man’s elderly father rises quickly from his seat at his own game of chance and says “It’s okay, he has autism, it’s okay” with a mildly desperate air, and I gently pull Justin back a bit as the autistic man in question repeats his mantra, loudly, several times. I smile back at the father and say “it’s fine, my son is autistic too”, and I see the relief wash over his face at my declaration. There will be no rantings about rudeness or scaring little children. It is quite clear that I “get it”. Once again, as I seem to do so often, I have run into one of Justin’s peeps.
We conduct the five-second-information-exchange as I prepare to move on, Justin both anxious to dispense with the rest of his quarters, and seemingly eager to put some distance between him and the man still yelling at him with, in his mind I’m certain, a justified and righteous indignation. Justin pulls my arm so hard I know Pilates is out of the question for a few days, and we reluctantly say goodbye to one another, connection aborted. I’ve run into a number of autistic kids, adults, and their families here, particularly in summer when the rides and boardwalk games are open in full force. For the most part I’ve bonded with the parents with a moment of eye contact and a nod (since we’re usually clutching our children with at least one hand this constitutes our version of a handshake), and since there’s no time to swap stories, we move on. It seems to happen more often than it should, considering technically autism is only in evidence in about 1% of the population (my husband is convinced I am some kind of magnet for it). It’s nice to have that moment, even fleeting, to feel that no matter what is happening that day, a complete stranger has at least somewhat walked in your shoes.
And believe me, they are not Jimmy Choos.
I often think how lonely it must be for the families with “orphan diseases”, with perhaps no connection to each other ever unless through the internet. Those of us embarked on the autism journey have become the Cinderella of disabilities (after the prince saves her from servitude, of course), and we’re fortunate to be able to immerse ourselves in such a wide-spread blanket of resources, information, and support. It seems everywhere I turn there’s a bumper sticker, a ribbon, or a story-line either beautifully or horribly executed on a prime-time television show. Through writing, speaking, legislation, and advocacy, references to autism seem to be everywhere I look, in every corner I turn.
We enter the sweet shop and begin to wrap up our revered January holiday, one dedicated to a man who simply embodied and helped define advocacy. I restrain Justin from making off with two pounds of fudge, reminding him once again, as with so many issues of greater import in his life, that he has to wait. In my mind I thank those parents, professionals and caregivers over the last half century who in their own passionate way have also redefined advocacy, by refusing to remain silent about injustices; by pushing for educational and federal reforms well before it was popular to do so; by adamantly and repeatedly denying anyone’s belief that our children are worth any less than ones without a label.
And for the zillionth time, again, I say thank you.