Like clockwork, I arrive at my shopping every week at the same time. Same produce market, same TJs, same staff shift … to the point where if “my team” isn’t on I’m a bit flustered. At the produce market I use my limited Spanish to thank the checker, to ask her if she’s done filling a bag, to warn her about an open bag of oranges. “Gracias,” “Listo con esto?” “Cuidado.” She’s asked, more than once, if I speak more Spanish. “No, no … un poquito. Only un poquito.”
Today, she asked if she could ask me a question. Usually, alarms go off; but today they didn’t. “The little girl?” “yes” “She’s your daughter?” “yes” “The little girl?” “With the hat?” “Yes.
“Is she sick?”
“No, no she’s not sick.
“She’s just different.”
So caught up in trying to parse through which aspect of The Blonde prompted the question (pale skin? permanent, large-brimmed hat?) I barely heard her explain that her son didn’t talk, then she gave him some vitamins, and now he talks. “How old? How old is your son?” “Eight.”
She wrote down the vitamin source (a website) and a product name (something with “Jr.”) and I thanked her. Then, I sat in my car and cried.
The Blonde’s mannerisms are inseparable from The Blonde. She is not She without the twirling and swirling, the vivacious vocalizing. The Blonde lives in a world of her own creation, where today’s world may have different rules than yesterday’s or last week’s. Something in the mix tipped off the cashier. She asked like she’d been working up the courage to, like she’s wanted to ask for a while.
Is she sick? I cried because the difference is noticeable, despite my desperate hope that my baby girl comes across as fine.
When The Blonde was first diagnosed with autism in late 2013 there was much rending of clothes and railing at the universe. I mean, really, autism? That’s big; not something temporary and curable like, say, the measles. Aw. ‘Tis. Um. Just saying it felt like a trap.
Even then, we knew she wasn’t simply autistic. For as many Big A markers she exhibited, there were an equal number of Certainly Not A behaviors and patterns. How many standardized forms have I completed where all answers were “YES” or “5 on a scale of 5” or “constantly”? Looking at the numbers The Blonde has ADHD, ASD, RAD, ODD, and SPD; her IQ is above average; she is preternaturally verbal; she stores words like a computer. Yet, she has limited self-care abilities, does not understand even natural consequences, and insists that her brain holds all the characters she’s ever read and that they, not we, are the real world.
Is she sick? I cried because she may not be reachable.
Medications have been shifted and tweaked. Timing is important. She swallows without questioning. She can’t remember to take them herself.
Is she sick? I cried because my daughter is dependent on mood altering chemicals simply to live without abject fear, and the violence that comes with it.
Tests have been ordered to explore her brain, her DNA, her wiring, her prospects.
Is she sick? I cried because there may be no diagnosis. I cried because there may be too many to fathom.
I’m sure that the word this gracious lady chose had more to do with my limited Spanish than her grasp of English. Or, perhaps, with her idea of what her son faced every day as a non-verbal eight year old.
Is she sick? I cried because the adjective was an option.
No one ever asked before. I was never forced to tell. It allows us to live in a world of euphemisms. Our girl is “tactile,” “high energy,” a “kinesthetic learner.” The first psychiatrist obscurely described her as “not neurotypical.” Our girl is “working on it,” “doing well today,” “full of life and love.” Our world is filled with bending not breaking, ignoring unwanted behaviors instead of tackling them head on, wondering if today is the day … if today is the day she finally connects.
Is she sick? I cried because I’d never allowed myself to think it before.
It’s a perfectly plausible explanation, so simple when someone else says it. Others must have assumed so already: Doctors, therapists, teachers, her friends, ours. So many vacations cancelled, jobs declined, play dates unscheduled. So many excuses piled high around our fortress.
Is she sick? I cried because our normal is living with the question … unanswered.