Shannon Des Roches Rosa
My son Leo has passed the eleven and a half years mark. I feel like I’m finally hitting my stride as an autism parent, in terms of accepting Leo on his own terms, and not giving a damn about the imaginary “easier” alternate reality society thinks I’m supposed to pine after. This means I think a lot about the information and attitudes I’d have wanted to jack, Neuromancer-style, straight into my brain eight years ago so I could instantly be the parent Leo needed me to be.
And that’s silly — neural enhancements aside — because instant downloads do not equal instant attitude adjustments. There’s often no substitute for experience constructed out of progressive, natural
epiphanies. Still, that experience can be altered dramatically by external factors, like consistent exposure to
positive attitudes and helpful perspectives; they shape our final outlook as parents and as people. So I’m going to dole out some perspective, and attitude.
I think a lot about gratitude. Appreciating what I have — and I have a lot, as does autism
parent Marie Myung-Ok Lee.
Appreciating Leo and his sisters for who they are. Thinking about what
we do have, what we get to do, and recognizing the poisonous futility of dwelling on what we don’t.
It’s understandable for people new to the disability community to dwell on not-having. Our society stigmatizes disability so vehemently that it’s often difficult to see this new scenario through any lens other than that of exclusion and unfairness. Until you step back and realize that all of life is not-having, if you make the choice to view it that way.
A frivolous example: I can’t take my kids to this weekend’s Mary Poppins singalong
because my husband will be out of town, Leo wouldn’t like the decibel
level or chaos, and I can’t justify a babysitter. I’m bummed, but I also
accept that parenting in general means not doing a lot of stuff
I’d rather do. Missing a movie is no different from the hours I spend
not-having experiences and options because of the choice I made and time I
put into to being a parent. Yet I’m encouraged to chuckle over and
commiserate about typical parenting drudgery, while anything having to
do with parenting Leo is perceived as either noble or tragic. Which is unfair and uninformed, as what we do for Leo is simply what we do, because of what he wants and needs. Just like what we do for
Is parenting Leo different than parenting his sisters? Sure. Are
parts really damn hard? Sure. Is parenting him harder than the
unfixabilities of raising a neurotypical child who cannot retain
friends, or who gets pregnant at fourteen, or who is an ungrateful,
entitled, unapologetic, dismissive jerk? Now that I’ve been doing this for a while and we have defined our own happiness, I don’t think so. I look into
my beaming, affectionate son’s eyes — they are gorgeous — and wonder, why
is anyone supposed feel sorry for the two of us, in our contented
companionship? I’m grateful that this beautiful boy is my son.
I suspect some of the pity we get ladled with has to do with communication. Leo’s is atypical, speaking and articulating are a challenge. But as I watch multiple marriages flame out around us — many with little thought for the children involved, except as extortion crowbars, and all sans significant quality-of-life issues — I have to wonder: what exactly does the ability to communicate typically guarantee? Especially when listening is not prized equally? Leo listens well. He’s not much for abstract concepts, but he’s present, and he understands, and he acts directly on what he hears. He always tries to get it right. Who should you feel sorry for, again?
I wish I’d known how important gratitude is, earlier. I wish I’d had someone shake me by the shoulders and to tell me to focus on my giggly, sweet Leo and what he can do, on helping him do more, on putting my energies into on helping him build his best possible present and future. On searching out role models in both the parenting (what it’s like to be Leo’s mom) and autistic (what it’s like to be Leo himself) communities, all of whom understand which parts of our lives are genuinely challenging, and which parts are a matter of what Leo’s godfather calls “attitude recalibration.”
We’ve been fortunate enough to find those communities, and for that and for so much in my lucky, lucky life — I am grateful.
A version of this essay was originally published at www.squidalicious.com.