For parents of special needs kids, a place and a space in which to share the struggles, the joys, the heartaches, the heartbreaks, the triumphs and tribulations of raising extraordinary kids. What works, what doesn't. What holds us and our families together; what threatens to tear us apart. Support, trust, friendship. This is what we promise to each other.
Monday, October 19, 2020
Parenting During a Pandemic: The Best of Us
The only social media platform I use is LinkedIn. Which is kind of funny, because I'm really not interested in all the career-related advice and self-promotion that populates much of the platform. Thankfully, there are other kinds of posts to pay attention to. Or to share. In that spirit, I recently posted a photo and a description of my autistic son's latest visit to our local hospital's infusion center, where he gets regular treatments for his ulcerative colitis. My comments focused on how well-liked he is there, and how generous and warm his response is to the staff.
In response to my post, Neil F, who knows Noah from his years as a participant in a special needs basketball program commented, "He is one of a kind!! The best natured human being..." That brought a smile to my face, but it also made me realize, once again, how wonderful it is to go through the world just like that--as a unique and incredibly good natured human being. Maybe it doesn't sound like much amidst the cacaphony of other stuff out there--angry, bragging, dumb, ridiculous, and so on--but isn't that how most of us would love to be thought of? I know I would.
Without intending to, Neil's comment reminded me that modeling is something we tend to look to high achievers for, viz., we seek to emulate those who are successful, famous, lauded for some reason or other. Which means we often focus on superficial things like money, status, credentials. Most of the time, character is barely considered in our calculations of what has value and why. Living with Noah turns all of that on its head. He doesn't have traditional "achievements" to call upon. Heck, he didn't leave high school until age 21, and college will never be in the cards for him. My son can't travel independently, take full responsibility for his self-care, understand money (how to earn it, use it, save it, etc), be left alone overnight, do a complex set of tasks completely unsupervised, or engage in truly age-appropriate social interactions. He doesn't have a single friend. Not because he isn't friendly, but because he doesn't understand the give and take of a friendship, or have shared interests with most of the peers he's encountered through the years. Noah's gift is to be that person who, entirely unwittingly, holds a mirror up to everyone else, and allows them to see where and how they fall short of his standards regarding how to be in the world.
So Noah in the hospital not only reacts to the kindness of the staff; he inspires it. He puts some extra spring in their steps, is the reason they smile a little bigger, and for a little longer. He's the one they ask for jokes, because he makes them laugh. He offers to share the snacks the staff give him because, well, that's just reflexively what he does. He learned long ago (thank you, Sesame Street!) that sharing is a good thing. And Noah is all about the "good thing."
In a world with so many problems, anxieties, and pathologies, there's something gratifyingly simple and reassuring about being the person who is the best natured human being. And I'm so grateful to Neil for reminding me of that...
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