With all of the loud jibber jabber happening lately about autism, and RFK Jr (anti-vax villain) bringing unprecedented attention to Severe Autism, and the ultra-predictable yelping from some corners who have issues with this or that, and recognizing that I’m lazy, I’m going to do my fair share by sharing some things I’ve written in days of yore, and that I collected into an e-book a decade or so ago.
Go ahead and buy the book if you want, but I’ll be posting most of it, chapter by chapter, in the coming days — even with the photos! Freebies!!! So, if unsatisfied, double, no, TRIPLE your money back.
I’ll start with the intro because, hey, why not?
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The Chronicles of Ben
David Royko
Smashwords Edition
Copyright 2013 by David Royko
ISBN 9780615879109
PREFACE
Chapters 1 through13 are our family’s life as seen through Ben stories, from 2002, when the twin boys were eight, up until this book went to “print” (or whatever ebooks do — “went to electron”?) in late 2013. Chapters 14 through 16 are Chicago Tribune book reviews in which I discuss Ben.
INTRODUCTION
I started writing about our life with autism for an intended audience of friends and family. In the early days, especially before “autism awareness” had reached critical mass, we were like most parents to a child with autism in that we felt isolated and alone. Even some of our more educated and enlightened friends and relatives didn’t know squat about it. Unless you lived with autism, day after day, and night after sleepless night, it was hard to know what daily life was like. Writing about it was a way of letting people know why we’d dropped from their radar screens; why we weren’t available for social events; why we couldn’t find sitters to hire; why we might seem tired or depressed when we did talk; why we had no money to spend; why we were late arrivals or no shows; et cetera ad nauseam.
What I soon discovered, when several of these pieces were published, was how many people were in the same boat. Streams of e-mails came to me from, mainly, two different types of readers: Fellow parents of kids and adults with autism who felt like I was describing their lives and experiences; and parents of “typical” kids, expressing shock at what life was like for us, and a new-found appreciation for their own day-to-day typical troubles.
These days, Autism Awareness has changed all of this, though many times, the mass media stories will focus on savant skills and “feel-good” stories about atypical people with autism, both high-functioning (including Asperger’s Syndrome) and otherwise. The mundane, day to day grind of autism that many families like ours experience often seems to be less-reported, and it’s easy to see why. It can be more troubling than entertaining.
I’ve tried to write about Ben in ways that don’t make him out to be a one dimensional bundle of trouble but a person with a strong, often amusing (and sometimes even hysterically funny) personality, while not avoiding the more challenging and downright horrible elements of the disorder.
And yes, to us it is a devastating disorder. While I understand the desire of many people with high-functioning autism to be seen not as disordered, but only different, that is not the case for Ben and his cohorts. For them, there is no upside to autism. It is a disorder, and a terrible one. But that doesn’t mean Ben is terrible. Most of the time, he’s a delightful guy, who often cracks us up with his quirky and funny ways, or melts us with his cuteness. We love him as virtually all parents love their kids, but that doesn’t mean we see his autism through magic, rosy glasses. Ben’s autism is his, and our, greatest tragedy, and something we will be dealing with to our dying days, as will Ben. But with Ben, we’re all in this together, and this is something we share with the many others involuntarily surfing atop this autism tsunami, trying not to wipe out and drown.
And let me apologize up-front to those who might be (will be) offended when I write about a person who is autistic, or of someone being autistic. Over the years, this has been replaced (reasonably) by references to people with autism (not somebody BEING autistic). I’ve changed how I refer to autism these days, but I haven’t gone back to “correct” my older writings. So, again, no offense meant. And, I’m certain Ben could care less.
Dave Royko
January 24, 2013
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[Photo: Ben — September 18, 2010]
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From:
The Chronicles of Ben
Published by David Royko
Smashwords Edition
Copyright 2013 by David Royko
ISBN 9780615879109
https://www.smashwords.com/books/view/361251
https://juggling-autism-the-chronicles-of-ben-royko.com/
Ben