I feel his tiny teeth before I see him lock down on the soft flesh between throat and clavicle, and I try not to wince as I attempt to disengage him while carrying on a conversation with a woman with two toddlers in tow. “He’s autistic” I say after she’s come over to me in the sober halls of the museum we often frequent with success, has noticed my struggle with my six-year-old and has offered to help. I see sympathy chased with pity flit across her face as I eventually free my bruised skin from my son’s clutches, thank her for her kindness, and move toward the exit with Justin in my arms.
We’ve lived half a decade with this diagnosis, he and I. I’m growing tired of explaining it.
There have been so many questions over the years. “Did he have it from birth?” (yes, thought it was colic). “Does anyone in your family have it?” (Technically no, but the jury’s still out on that one). “Did he get it from vaccines?” (Not even going there). “Will he grow out of it?” (No, it doesn’t work that way). “Does your other child have it?” (yes, but a different kind, go figure).
So many questions, so little time.
If I did have the time in these encounters, which I rarely do with my severely autistic son, I could educate these strangers with their generally polite queries about autistic disorder, and the different ways it’s affected both of my sons. I could talk about the spectrum, and trot out the old “If you’ve met one person” adage to elaborate on how differently each individual presents. I could talk about theories of misconnections in the brain, of cell phones and viruses and hell, even circumcision, as ideas touted as to the origins of autism. I could spout statistics about how many autistic adults eventually speak and how many need lifetime care, what percentage of the population has it, and the differences between the one where the child shows signs at birth and the one where your seemingly neurotypical toddler seems to vanish before your eyes.
So many of these facts ingrained on my soul.
None of them really get to the heart of what autism really means for my family.
But if I had the time for a chat, hopefully with a sitter and a little coffee and chocolate thrown in, this is what I would say.
Autism means embracing an altered landscape of living for both of my sons.
Autism means learning to communicate with my eldest son with a look, a hug, the ability to almost read his mind, and sometimes forgoing words.
Autism means pushing my children to be the best they can be, living their dreams, not mine.
Autism means losing a lot of sleep.
Autism means learning to live with knowing I won’t be around to protect him forever.
Autism means never getting over it.
Autism means making the most of every moment we still have.
Autism means patience, and kindness, failure (mine), and vulnerability.
Autism means reveling in every success no matter how small in a way I would never have if my kids were neurotypical.
Autism means sometimes struggling to keep a marriage alive.
Autism means always having a plan B, C, and D, wherever we go.
Autism often means exhaustion.
Autism means accepting that everything I took for granted, every minute detail about raising children, has been turned upside down.
Autism means isolation.
Autism means cleaving to those who “get it.”
Autism means financial hardship.
Autism means embracing what gives them pleasure and sharing it, even if it’s a Baby Einstein video for my teenager.
Autism means meltdowns and fear and frustration.
Autism means unmeasurable pride at successful outings.
Autism means being part of an unbreakable community.
Autism means days that are soul-sucking hard, and days that are brilliant with connection.
If I had that time, I would tell those inquisitive souls autism means struggle, and accomplishment, sadness and joy.
I would tell them for me it means embracing every inch of who my boys are, and always striving to unearth their best selves.
And as I finished that last crumb of chocolate, I would tell them autism means never giving up on attaining happy, healthy, and safe lives for our children.
For more on my family visit my blog at autismmommytherapist.wordpress.com
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