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    The Chronicles of Ben: Adventures in Autism
    The Chronicles of Ben: Adventures in Autism
    The Chronicles of Ben: Adventures in Autism
    Ebook157 pages2 hours

    The Chronicles of Ben: Adventures in Autism

    By David Royko

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    About this ebook

    "The power with which Royko describes life with Ben is unsparing and unforgettable." Eric Zorn, Chicago Tribune "Change of Subject" October 21, 2013.

    Bringing together features that first appeared in the Chicago Tribune Magazine (cover story), National Public Radio’s 'This American Life,' Parents Magazine, the Chicago Reader, The Week Behind, Australian Broadcasting Corporation's 'All in the Mind,' the Chronicles of Ben Blog, and previously-unpublished material, "The Chronicles of Ben - Adventures in Autism" offers in eBook form the ongoing stories of Ben Royko and his family's ongoing struggles with severe autism, as told by author/psychologist David Royko. "The response has been massive" (Rick Kogan, Chicago Tribune), is typical of the reception Dr. Royko's autism-related work has received. This book presents, in chronological order, an intimate and engaging view from the inside, for parents, professionals and anyone interested in life with severe autism. Also included are several book reviews relating to autism and life with Ben, and selected photographs by the author.

    "David Royko is an extraordinary voice of raw sanity, compassion, humor (!!) and other-worldly love within the chaotic challenges of parenting a child with severe autism. His family is a lesson in the deepest meaning of parenting, marriage, partnership, big, big love and beyond-human sacrifice. The humanity in these words, these images, these moments that make up The Chronicles of Ben - Adventures in Autism is whatever the word is that means far, far beyond inspiration."
    Pamela Cytrynbaum, Psychology Today blogger and Executive Director of the Chicago Innocence Project, October 21, 2013.

    LanguageEnglish
    PublisherDavid Royko
    Release dateSep 25, 2013
    ISBN9780615879109
    The Chronicles of Ben: Adventures in Autism
    Author

    David Royko

    DAVID ROYKO, Psy.D, is a licensed clinical psychologist and freelance writer. Dr. Royko has written extensively about children of divorce, autism, and music for a variety of publications, including Parents Magazine, the Chicago Tribune, the Chicago Reader, and the New York Times, and has been featured on National Public Radio’s “This American Life.” His book, Voices of Children of Divorce, is published by St. Martin’s Press and as an eBook by Macmillan. He is the editor of Royko In Love: Mike’s Letters to Carol (University of Chicago Press, 2010), and author of the eBook, The Chronicles of Ben: Adventures in Autism (Smashbooks, 2013). Dr. Royko joined the Circuit Court of Cook County’s divorce mediation, intervention and education program, the Marriage & Family Counseling Service, as a mediator/conciliator in 1988, and has been director of MFCS since 1993. From 1999-2003, he designed and taught “Children of Divorce in the Classroom: A Two-Day Workshop for Education Professionals” for SkyLight Professional Development and Training, and co-hosted “Royko’s Shrink Radio,” a weekly call-in show on WRMN-AM, Elgin, from 1999-2000. Dr. Royko lives in the Chicago area, is married to Karen, and they have twin boys, Jake and Ben.

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      Book preview

      The Chronicles of Ben - David Royko

      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

      The Chronicles of Ben

      Published by David Royko

      Smashwords Edition

      Copyright 2013 by David Royko

      ISBN 9780615879109

      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

      Table of Contents

      Preface

      Introduction

      Chapter 1 - EESINNUH (February, 2002)

      Chapter 2 - BABY CRIES (March 24, 2006)

      Chapter 3 - COMMUNITY HELPERS (May 5, 2006)

      Chapter 4 - A NEW LIFE (June 27, 2006)

      Chapter 5 - TRANSITION - A BEN UPDATE (July 27, 2006)

      Chapter 6 - BEN’S FIRST HOME VISIT (September 6, 2006)

      Chapter 7 - MIRACLES, PTSD, DEPAKOTE, AND WEEKENDS (2006 - 2007)

      Chapter 8 - FROM OCONOMOWOC TO SHAKER HEIGHTS (May, 2011)

      Chapter 9 - AUGUST – UGH! (Summer, 2011)

      Chapter 10 - WHAT A DIFFERENCE A MONTH MAKES (Fall/Winter, 2011)

      Chapter 11 - HAPPY MUSICAL NEW YEAR

      (2012) (includes: Ben and Bela [Fleck]; Is It Possible To Be Banned From Costco?)

      Chapter 12 - ANOTHER YEAR CLOSER TO BEN’S CHRONOLOGICAL CLIFF (2013) (includes: Ben, Autism and Guns; The OCD Of Ben; Why We Hate Autism)

      Chapter 13 - LOOKING BACK AT THE ROAD AHEAD (2013)

      Chapter 14 - BOOK REVIEW: EXITING NIRVANA (PARK)

      Chapter 15 - BOOK REVIEW: LOOK ME IN THE EYE (ROBISON)

      Chapter 16 - BOOK REVIEW: BOY ALONE (GREENFELD)

      The Chronicles of Ben - Notes

      Ben

      September 18, 2010

      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 the majority of families so afflicted 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

      Deerfield, Illinois, January 24, 2013

      From left: David, Ben, Karen, Jake Royko, August 28, 2005

      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

      Chapter 1

      EESINNUH

      (February, 2002)

      Eesinnuh, eesinnuh.

      It’s enough?

      Eesinnuh, eesinnuh.

      It’s a nut?

      Eesinnuh, eesinnuh.

      Eats enough?

      Eesinnuh, eesinnuh.

      It’s a knot?

      Eesinnuh, eesinnuh.

      My mind flashes to Citizen Kane and Rosebud. I find myself imagining Ben, decades from now, an old man on his deathbed, uttering his last thoughts to someone who has no more of an idea what he means than I do today. Eesinnuh, eesinnuh.

      Or maybe he’ll say Wyet (pause) Errrr. We know that one’s not Wyatt Earp, nor quiet earth. Sometimes with Ben it seems like we know more things that are not than things that are. In that, we have much in common with the scientists. In some ways that’s a good thing. At least they know now that autism, or Pervasive Developmental Disorder, or whatever term you choose, is not a psychological disorder brought on by bad parenting. Bruno Bettelheim didn’t know that a half-century ago, or chose not to entertain that idea. Instead, with the certainty of a medieval barber-surgeon promoting bloodletting to cure all ills, he brought torturous blame down upon the heads of parents already locked in an emotional chamber of horrors. We now know that autism is a devastating disorder of neurology, not of psychology, at least for those afflicted directly. The psychological problems tend to come to those who love them.

      But at least there is direct eye contact, something that took plenty of work and training and practice, and something that we almost take for granted now, even if we once thought eye-to-eye contact with Ben might never become routine. And Ben’s in a good mood, and is beaming his smile in his radiant way that brings to mind his mother’s comment that when he is happy, he is the most delightful little guy, but when he is unhappy, he is the most distressing person imaginable. She is right, except for the little guy part.

      Ben is five feet tall, 150 pounds, wears a men’s size eight doublewide shoe, and is eight years old. He is not a little guy, unfortunately. If he were, he would be easier to control, at least physically. Steinbeck’s Lenny shared the same problem of size. We will never have rabbits for pets in our house. I am the parent genetically responsible for his size, weighing in at three hundred plus pounds and standing six feet six inches tall, and even if I can still control him better than his 5’4" mother, my limits are too often tested, too often exposed. Like when we are taking a walk.

      Taking a walk is actually one of Ben’s phrases that is easily understood, even if it is often belted out for no good reason (like during a bath). We revel in all of Ben’s words, because there was a time we didn’t hear any. On this particular Saturday afternoon, however, the phrase described what we were doing. Then again, it doesn’t really begin to describe what we were doing.

      This had been a nice day. Ben’s OT (Occupational Therapist) had called to cancel his standing appointment, which meant we were completely without any scheduled activities for Ben that day, which can be a challenge. But the weather was nice for a winter day in Chicago, and Ben always loves the train. We climbed into the van and headed for the Linden stop at the end of the Evanston L line.

      The trip to Howard Street and back on the train had filled Ben with joy, as usual. The highlight, for me at least, was when Ben startled the other riders by excitedly and abruptly yelling Now watch Mr. Bunny!!! That particular war whoop comes from one of the many videos of Ben’s that have crossed over, which means he used to love it and watch it incessantly until, one day, he became absolutely, profoundly terrified of it. But even if he no longer can watch it, he still loves to quote it. Loudly.

      When the ride ended, we headed for the car. Driving north on Sheridan Road through Winnetka, one of the wealthiest suburbs in the country, full of lavish estates and imposing old mansions, I passed a small playground that was planted near the Lake Michigan shore, and the unseasonably warm January weather, along with the fact that it was still six hours before Ben’s bedtime, made me double back to the picturesque scene of monkey bars and moms and dads playing with their kids. Ben was happy to hop out of the van and get moving along the equipment. Hah! I thought. His OT is free today.

      One of the benefits of this park is the unbroken fence that runs along the top of the bluff, making it impossible for Ben to try to climb his way down to the beach. Walks along the beach can be nice, but Ben inevitably wants to go much further along than is possible, happy to try and climb over a rusty sea wall, head up onto beachfront private property, or--especially fun to him--wade out into the freezing water fully clothed to try and get around a barrier. I was not in the mood for that brand of fun.

      Ben was. Finished with the jungle gym, it was time to try to get to that water. Moving along the length of the fence, Ben hit the north end, which joined with a high wooden privacy fence separating the park from the mansion next to it. Actually, for Ben to hit the north end, he first had to crawl through some thick bushes in the corner of the park, which he did, but with me acting only as an observer who hoped he wouldn’t emerge in need of tweezers.

      But he hadn’t given up yet. It was now time to walk along the privacy fence, and I expected that once we hit the sidewalk along Sheridan, he would want to go around the end of the fence and head back to the water on the private property, and I was ready to do battle. To my happy surprise, once he reached the sidewalk, he turned to the left, and started walking along the sidewalk, southbound.

      I thought at first that we were now just going for a walk, and maybe we were, though later I realized that he might have thought that somehow the sidewalk would eventually lead to the water. But at that moment, I said to

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