June 6, 2013 by whirlyjoy
Last week I had to pick Mimi up early from school for an appointment, and found myself in unwilling conversation with another mother I didn’t know, also waiting for her child to be called out of class to leave for the day.
I so overtly tried to avoid talking to this very amiable woman that she would have been well within her rights to find me rude, or at least socially maladjusted. After we caught each other’s eyes and smiled, I turned my back on her, trying to focus on the array of trophies in the case opposite the attendance office, or watch the stairs I hoped Mimi might appear in momentarily so we could escape together. But when I finally turned back in this woman’s direction, she was lying in wait. “So you have kids here at the school?” she asked, using a standard parent pickup line.
What was I thinking, making myself available like that? I should have buried my nose in my iPhone.
I doubt anyone I know would describe me as shy or withdrawn – either in making conversation with new people, or in sharing openly about myself and my life with those I consider my friends. I do nurture a kind of underground Sartresque “l’enfer, c’est les autres” mindset, particularly in the years since I became a single working mom. Now that so little of my time is my own, I try to be very careful of who I share my energy with, and how.
What was going on at school that morning though – that has to do with the minefields that riddle the landscape of this kind of everyday “get to know you” conversation when you have a child with severe disabilities.
When I first moved back to the Pacific Northwest after almost 20 years overseas, it was specifically to get Aida the help I sensed with all my broken mother’s heart was not available for her in France. Literally every day was spent taking her in her ragged, collapsible stroller to evaluations, therapy appointments, her developmental preschool, city, county and state offices to find out about and occasionally even access assistance for medical insurance, child care, etc. Mimi was a baby and spent much of her time with Nana and Opa. I would stop in at their downtown condo to nurse her and then roll Aida back out for another exam; all this using the degenerate city bus system until I found the time to learn how to drive and get my license.
Everyone I met in those first couple of years was navigating the same frantic, grief-filled maze of diagnosis and therapy for their children with autism (or any number of other developmental disorders that I have come to know so very much about in the past fifteen years). We would sit in waiting rooms for neurologists, developmental pediatricians, psychiatrists, speech-language pathologists, occupational therapists, nutritionists… often recognizing one another from other stations on the autism wagon train. We would covertly or openly watch one another’s children. Were they verbal? Were they out of diapers? Did they make eye contact? If so, what helped get them there? We would exchange stories about having to lay on top of a tantruming child on the sidewalk outside the Safeway, or wrench a stranger’s pizza slice back out of their hands at the food court at the mall, or clean up when they chose to make a toilet stop where no toilet was present. About how we managed our own emotions and others’ reactions when these things occurred. We would share out names of hairdressers, dentists, birthday party venues and babysitters who could deal with “our kids,” like they were rare gems. Which they were.
I’ve experienced culture shock many times in my life, from our first move to Basel when I was six years old, through several more back-and-forths to Switzerland, Germany, and later France. Culture shock hits in both directions – leaving “home” (however you might define that when home has been so many different places) and coming back again after years away. It’s subtle – not so much “shock” as a kind of subterranean vault of perplexity and a need to reeducate your social reactions to a new cultural environment. I distinctly remember one day on a visit back from France, a stranger stepped in with me to ride the elevator in my parents’ condo building, and smiled at me – and my Paris-trained responses had me backed up against the far wall, trying to look off anywhere else (at the opposite upper corner of the elevator cab?), not make eye contact, and wait for this socially inappropriate stalker-like person to get off and leave me in my carefully maintained urban aloofness.
The culture shock of starting Mimi at preschool – a regular neighborhood program in a local church basement, with none of the bells and whistles of the university-run early intervention center Aida attended – was just like traveling to a new country for the first time, full of unfamiliar customs and ways of speaking and interacting. What on earth do you talk to other parents about, I wondered, if not the latest behavioral therapy or dietary intervention? Sure-fire conversation starters such as “when did he start regressing?” or “what sensory supports work for her?” would not, I suspected, help me out here.
This cultural divide was probably exacerbated by the fact that Pepe LePew had only very recently boarded a plane to return to France for good, so I was feeling a smidgen overwhelmed in general.
I initially toured what would become Mimi’s preschool knowing I could only afford to send her one morning a week – which seemed like too little for her ready energy, but better than nothing. The school management, however, expressed its opinion that two mornings a week was really a minimum, developmentally, for a three-year-old.
I remember almost laughing out loud at this – it felt like splitting hairs to worry about child development for these vivacious kids, after coming from “circle time” with Aida and her classmates who seemed always largely absent from the proceedings despite all the weighted vests, chewy necklaces or sound-damping earmuffs we threw at them. Classic culture shock.
(I didn’t laugh. Instead, in the vulnerable and slightly traumatized state brought on by my life back then, I agreed to teach French and German to a bunch of preschoolers in exchange for that second morning a week for Mimi. It was my first year on my own, and my fledgling translation business was not providing much in the way of occupation or income. I knew from previous experience that I hated teaching; I did not yet know that I disliked spending time with large groups of preschoolers. How bad can it be? I thought. And anyway, it was for Mimi’s sake.)
But back to the gap in the middle school entry hall, and that very daunting question: “So you have kids here at the school?”
I could answer with a perfectly simple and natural: “Yes, a 6th grader and an 8th grader.” (This is already glossing over complexity with selective truths, since Aida has officially been a 7th grader again since last month, when I lobbied successfully for her to stay for one more year in the classroom that is serving her so well right now. I am the mother who deliberately worked to have her child held back – “retained” they call it these days. How does that look from across the cultural divide?)
But never mind that. If I offer up both girls for conversation, and that talk takes its natural course, we will hit on Aida’s situation eventually – when comparing teachers, subjects, after-school activities, plans for high school… Aida’s experience in a self-contained special ed classroom, all efforts at inclusiveness in the education setting notwithstanding, has just about nothing in common with what a typical 8th grader might be doing at school. Once this subject is opened, most people, especially the well-meaning kind, will ask more about it. This has two consequences: Aida’s disabilities quickly become the dominant aspect of the conversation, unless I work hard to prevent this (just as her disabilities are the dominant aspect of our family life, except where we work hard to prevent it). And also, there’s no hiding behind the generalities and stock responses that we can usually take advantage of in small-talk situations. When your life is unusual, every get-to-know-you conversation can become very personal, very quickly.
I had plenty of training in my own formative years in deftly negotiating the terrain of new countries and languages, but I don’t know that I’ve been very successful at overcoming the autism gap. One reason, I think, is that instead of an ocean separating these spaces, my doorstep forms the border between the culture of our special-needs family, and the dominant surrounding assumptions. I straddle the worlds of autism and “typical” on a daily basis, and I don’t think the kind of mental agility this requires comes naturally to anyone.
This month’s jackpot small-talk question at school events and random neighborhood encounters is: “Are you looking forward to summer? What plans does your family have?” The true answer, for me and for Aida and for many on the spectrum, is: “No, I am mostly dreading it with a horror that I feel physically in the pit of my stomach.” Which is not, you must admit, a great segue into: “And what about you? What are your plans?” Luckily, no one really expects more than the comfortable half-truths I usually answer with (“I think we’ve got things sorted pretty well” – “We’re hoping for a good summer” – “How about that global warming, huh?”), and I’ve become accustomed to the little stabs of grief that visiting the real world across the autism divide entails. Lessons learned in minding the gap, keeping calm and carrying on.