Super(market) Advocacy

While a parent may have figured out what kind of teaching and therapies their child needs at home and in school, there's still the rest of the world to deal with. Grocery stores, shopping malls, libraries, houses of worship, movie theaters, restaurants: Overwhelmed by anything from sensory overload -- noise, smells, sights -- it may be all that an autistic child can do to keep his head down and get through the labyrinthine aisles of the modern American supermarket.

I wrote this for the About section on this blog, as an example of the day-to-day advocacy I've come to know in raising my son Charlie.

Many a story of "grocery shopping catastrophe survived" exists in the annals of parenthood and certainly in parents raising a child on the spectrum whose need for order and sensory challenges can be seriously compromised amid the fulsomely stocked, fluorescent-light-lit environs of the local Safeway, Schnuck's, or Shop Rite. Yesterday's MotherLode blog in the New York Times featured a "tale of two mothers," an account by a blogger/mother/mother of a son on the spectrum in the supermarket line. Mary Jones (a pseudonym) blogs at A Room of Mama's Own; in her post on the MotherLode blog she presents two accounts of the same story. The first is a third-person account of Jones's son, Austen, struggling to wait in the checkout line. The second is a first-person account in which Jones discusses Austen's sensory issues and his strong need for routine, and how this supermarket visit was "all in all, it was a very successful trip," whatever bystanders might think.

It's a too-familiar scenario and Jones's twice-telling of the same experience, from the perspective of what others see and then of what she herself knew was going on, shows the disconnect between what people--"others," "strangers"---might be thinking when they see an individual on the spectrum seeking to self-calm, and what that individual and those who know her or him well are thinking. I'm reminded of the National Autistic Society's "Think Differently" campaign: Autism's much more than common stereotypes of "Rain Man" and the "idiot savant." When you see a child "misbehaving" in public, it's not that the child is "being bad" and that her or his parent isn't "doing their job"----the child could well be on the spectrum and the parent is doing everything they can possibly think of, and just settling for a hasty retreat to the car.

There was a child screaming "candy! candy!" and making the shopping cart shake in the grocery store where Charlie and I were last night.

We passed her, and her mother staunchly pushing the cart (which had a well-bundled baby boy in the front part). My first thought was not about "what" the child might have---she was barely more than a toddler and who knows but in the terrible two's---but the thought, what would I most have appreciated someone did when Charlie had been having a really hard time of it and it seemed that everyone was hurrying past, staring, talking very forcefully on their cell phone, shaking their heads?

Charlie unloaded our groceries onto the conveyor belt. "Someone's not happy," said another customer---the mother and her two children were in the next aisle---the clerk sort of smiled and nodded. I handed Charlie the bag of groceries and we walked out.

The mother with the two children was just in front of us, her daughter still crying loudly. Charlie was happily hurrying towards the black car and as we passed them, I said words to the effect "you're doing good, you're a good mom." I don't know if those words were heard or if they were appropriate or if I might have just put the proverbial foot in my mouth: So many memories were racing through my head of feeling on the spot as I tried to calm a crying Charlie and tell the world, there's a reason for this! he's doing his best! he's trying so hard, so very very hard.

Advocacy empowers and it also can bring us together when, out alone in the big supermarket of the world, we realize someone else isn't judging us. They're rooting for us, they're with us, and they know that we can do it.