J. B. Handley - Underestimated

Copyright 2021 by J. B. Handley and Jamison Handley

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Library of Congress Cataloging-in-Publication Data is available on file.

Cover design by Yuneekpix

Print ISBN: 978-1-5107-6636-5

Ebook ISBN: 978-1-5107-6637-2

Printed in the United States of America

CONTENTS

For EV, who never gave up on any of us.

Introduction

Sometimes real superheroes live in the hearts of small children fighting big battles.

Anonymous

A utism means different things to different people, which shouldnt be any surprise. The official term for autism is Autism Spectrum Disorder, and that word spectrum ensures that people will forever be confused when trying to understand how the word autism serves to describe any one individual. Thats why its important to start right here in describing a very special young man with autism, my son Jamison Havener Handley, henceforth known in this book as Jamie.

You can find an adult with autism, unable to talk, prone to raging, wearing a helmet to protect themselves from self-injury, unable to meet even basic daily needs, living in a full-care facility where the goal of care providers is simply to keep the person safe and alive. Another person with autism might be attending college, their differences subtle enough to escape the notice of most of their classmates. You might even say that autism has become fashionable. Jerry Seinfeld, before taking it back, told Brian Williams on NBC that I think, on a very drawn-out scale, I think Im on the spectrum. And what evidence did he have for his autism? Basic social engagement is really a struggle, Mr. Seinfeld explained. If only that were the autism weve lived with for the past seventeen years.

My wife, Lisa, and I will sometimes say, really only to each other, that Jamie has the real autism. At the risk of offending someone on the spectrum reading this book, please withhold judgment until I explain what that means for us. Jamie doesnt speak. When extremely frustrated, he can explode into a fit that ends in self-injury, the kind thats sent him to the emergency room. He has distinct mannerisms and will stim in a way that clearly signals to the onlooker that Jamie has a unique disability. He has compulsions that can be hard for him to manage, like tearing leaves into very small pieces. In school, it was clear to Jamies teachers that he was kind, sensitive, and able to track and understand many of the things said and going on around himwhats known as receptive languagealthough how much he was tracking no one really knew. Communication has always been Jamies biggest challenge. With the exception of a handful of words to get his basic needs metphrases like shower please, go car, help pleaseJamie has been a non-speaker his whole life, despite many different communication methods we and his teachers tried to help get him speaking. This inability to speak has not only made assessing Jamies cognitive functioning and intelligence level nearly impossible, it has relegated him to a life skills class in a school here in Portland, Oregon, called Victory Academy, henceforth known as Victory, that only serves children on the spectrum. What does it mean to be in a life skills class? In my opinion, it is a nice way of saying something to this effect: We dont think you have the cognitive ability to take academic coursework, so we will focus on giving you the skills to be as independent as possible. As hes gotten older, Jamies school days have increasingly been spent learning how to do laundry, clean up, use a debit card, cook, and master other basic tasks that will help him navigate his looming adulthood.

Jamies teachers have always been quick to tell us how much they love Jamies gentle, loving nature, his warmth, his kind presence, and his infectious joy on display during favored activities. But even the most optimistic evaluation of Jamie given by the same caregivers contorting themselves to not hurt our feelings always left me feeling depressed and worried, deeply worried, about Jamies future. They couldnt really tell us much about Jamies cognition. They didnt think he could read. Math? He could count to 100, but that appeared more rote. Processing a mathematical equation? Hed never shown he could. How do you plan a future around that type of guidance? We had no idea if Jamie had dreams, goals, or hopes for his adult years; it was all conjecture. Heck, did Jamie even know what dreams or goals were? I didnt know for sure, because we had no real sense of how Jamie was processing the world. Walking out of these painful progress reports, Lisa and I would be saddled with the same harrowing question that so many other parents of children with the real autism face: what will my child do when Im gone?

My best friend in the world is Drew, and he lives in Salt Lake City. His two children are, by my standards, utterly perfect, and the challenges he faces as a dad are, compared to mine, pretty damn trivial. He knows this, and he does his best to understand what life is like for me. When he visits, he takes great pains to connect with Jamie, and I love him for his effort. For whatever reason, as I sat down to write this book, my mind kept returning to a conversation we had, several years ago. I was standing in the backyard, on my phone. Jamie, as is often the case, was between our bushes, shredding leaves, seemingly in his own world. As he usually does, Drew was asking me sincere questions about Jamie, trying to better understand how things were really going, like No dude, how are you really? I was trying to appear the optimistfind something positive to say about our plight and Jamies dimming prospects for a future. I guess I wasnt ready to lose it on the phone with my best buddy. Thats when I said something to Drew that Ill never, ever forget. It may be a blessing in disguise: Jamie has the kind of autism where he doesnt even know he has autism. Hes oblivious and happy, not self-conscious, I reasoned, and in a sense, maybe were blessed. If we can keep finding things that keep Jamie happy, he can still have a happy life, and what he doesnt know or understand cant hurt him.

Yes, I said all that. I believed what I said, too, I really did. And I couldnt have been more wrong. I mean, wrong by a trillion miles wrong. My own son. Thank God for that, thank God for Jamie, and thank God for the miracle that has made this book possible.

I

Twelve Months

Vancouver Island

There is no darkness but ignorance.

William Shakespeare

S ome birthday were having for Jamie. August 21st has become perhaps my least favorite day of the year. Its no longer a day where I celebrate Jamies birthday, but rather a day that reminds me of all thats been taken from him and the life he has missed out on. This one hurts a little more. Its 2019, and Jamie is seventeen today. In twelve months, the state will consider Jamie an adult, which means Lisa and I must go through major legal bureaucracy to declare Jamie incompetent and become his legal guardians. Happy Birthday!