I’ve been like the wallflower at the Autism Awareness party this week – partly by choice, partly by other distractions like work and moving. I mean, I have friends who are commemorating this month by lighting our world up blue on a national stage by writing to President Obama. Another has taken on Home Depot (and, in her spare time, our local elected officials) and been embraced in the process. And there have been posts, wonderful posts, so many I can barely keep up.
And me? Well, it’s April 2, World Autism Awareness Day, and I still don’t know what I want to do to commemorate this month (April is National Autism Awareness Month).
I say commemorate, not celebrate, because for so many of these 7 years that we’ve been on this autism journey, it hasn’t always felt like a celebration. Funeral-esque is more like how I prefer to think of the first years (“The Black Hole Years,” as I call them). My preference is usually to mark this month by hiding under the covers, proclaiming that I’m damn well aware of autism the rest of the 11 months of the year, thank you very much.
Still, sharing the struggles and joys with Boo and our journey and growth as a family was a big part of why I wanted to start a blog in the first place, two and a half years ago. I thought that by giving our friends and family a little glimpse into our everyday world, the good and the bad, the happy and the sad, then maybe they too would understand a little more about autism, about Asperger’s, and what makes us and our family – especially our son – tick. And in doing so, I found this amazing group of people who are doing the same through their words and their children’s stories.
So I think the way I will commemorate celebrate Autism Awareness Month is by sharing some of my posts from the past, because there have been new readers in that time. And maybe there’s a post that might resonate with someone who hadn’t seen it before, or with someone who is dealing with their own Black Hole Days of diagnosis. And I’ll give you a new post or two, as they happen in real time.
Which is a long-winded way of leading me to this post and the subject thereof. I’ve been on an R.E.M. kick for the past week or so, having discovered the band’s “The Best of R.E.M. In Time: 1988-2003” CD on the racks at the library. I’ve been playing the likes of “At My Most Beautiful” (probably my favorite R.E.M. song, if I had to choose), “Night Swimming,” and “Everybody Hurts” in the car, which is what I was doing last night driving north for an hour on I-95, headed to the airport to pick up The Husband, two sleepyheads in the back seat listening to their respective iPods.
And then it dawned on me.
I was listening to R.E.M.
In Boo’s presence.
You see, as much as R.E.M. is a remnant from my late high school and college days (an era that has been steeped in nostalgia for me a bit this week), it plays a significant role in the Early Black Hole Days of Boo’s autism diagnosis.
As a mom of toddlers, I wanted to introduce my kids to the wonder that was – and is – “Sesame Street.” And for the most part, they liked the show and its characters. (We had all the various incarnations of Elmos – Tickle Me Elmo, Chicken Dance Elmo, Drive Parents Batshit Crazy Elmo.) As a stay-at-home mom, I appreciated the in-jokes for the grown up and musical acts, like R.E.M. who came on to perform “Shiny Happy Monsters.”
Which my boy absolutely hated.
No, scratch that. Hate is probably too strong of a word. It was a song that absolutely freaked him the fuck out. We’re talking more than tears, more than screams, more than your typical meltdown (even autism-style).
We’re talking gnawing on the hinges of the entertainment unit in utter terror, complete fright.
Needless to say, every time the “Shiny Happy Monsters” segment appeared on “Sesame Street,” we went into lockdown crisis, high alert mode in our living room. It was like the highest echelon on the color-coded terrorism threat scale. More often than not, I wasn’t successful in keeping the terror at bay and the day would be – at least for a couple hours – unsalvagable. The R.E.M. CDs in our house disappeared from sight, lest even the mere viewing of them induce such angst in my boy.
It was, in retrospect, one the first signs that something was amiss. I had little experience with other kids, but even in my shakiness as a new mom, I was pretty sure that other kids weren’t eating the hinges of the entertainment unit and pounding on the television, wide-eyed in fear, as a reaction to a song catering to the preschool set.
Fast forward to last night, driving in the dark on I-95, with the unmistakable sounds of R.E.M. coming through the speakers. “Shiny Happy People” isn’t on that particular CD that we were listening to, but the silence from the backseat suddenly struck me and spoke volumes.
This is what autism looks like on the other side of the Black Hole Years, I thought. It’s such a small thing, but a big reminder of where we once were, in a time of being scared and feeling alone, the monsters coming out to play, today and everyday.
“Hey, Boo?” I said, tenatively, knowing that the Ghosts of Autism Past were capable of popping out anytime. “Do you recognize this music?”
“Huh?” he said, looking up from his DS.
“Do you know this group?”
I explained that when he was a baby (he’s in a stage when he loves hearing about himself as a baby), this very group had a song that he couldn’t listen to. I told him about the tears, the meltdowns.
“You would be so upset that you would even try to eat the hinges of the entertainment unit. You know, the one that’s downstairs.”
And he laughed.
And I found a way to make him smile.