Valerie Gilpeer - I Have Been Buried Under Years of Dust: A Memoir of Autism and Hope

Contents

This is a work of nonfiction. The events and experiences detailed herein are all true and have been faithfully rendered as remembered by the authors, to the best of their abilities. Some names have been changed to protect the privacy of the individuals involved.

I HAVE BEEN BURIED UNDER YEARS OF DUST . Copyright 2021 by Emily Faith Grodin and Valerie Gilpeer. All rights reserved under International and Pan-American Copyright Conventions. By payment of the required fees, you have been granted the nonexclusive, nontransferable right to access and read the text of this e-book on-screen. No part of this text may be reproduced, transmitted, downloaded, decompiled, reverse-engineered, or stored in or introduced into any information storage and retrieval system, in any form or by any means, whether electronic or mechanical, now known or hereafter invented, without the express written permission of HarperCollins e-books.

Cover design by Richard Ljoenes

Cover photographs doodko/Shutterstock (woman); Mary Sisco/Shutterstock (steam)

FIRST EDITION

Digital Edition APRIL 2021 ISBN: 978-0-06-298436-4

Version 03032021

Print ISBN: 978-0-06-298434-0 (Hardcover)

ISBN 978-0-06-308306-6 (International Edition Paperback)

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EMILY GRODIN is a college student studying journalism, psychology, and creative writing and has been recognized for her academic achievement. She has been featured in Leaders Around Me and published in Amuse-Bouche. Emily is an advocate for herself and members of her community in an effort to dispel the misconceptions and nonacceptance of those with autism.

VALERIE GILPEER is an attorney who has been practicing law for forty years. She shifted her civil law practice twenty years ago in favor of representing families of disabled children trying to obtain educational services from local school districts. She has continued to focus on disability rights law through her volunteer work with several nonprofit organizations in the Los Angeles area. Valerie and Emily live with Tom Grodin, Valeries husband and Emilys dad, in Encino, California.

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For every person who is searching

for their voice, and all those who struggle to be heard.

We dedicate these words to you.

E.G.

Hello readers,

For 25 years I was trapped inside a body without a voice. Through the help of my communication partner, I have learned to type. Im now able to really express my thoughts and feelings in a way I never thought possible. The years used to pass me by and I was merely an onlooker of my own life. Now I am the one making the decisions about my life and wont ever again be silent. Im so very grateful every single day. Please friends, do me a real favor and be open minded when you meet someone on the autism spectrum. I can guarantee that there is more to them than you can see.

Sincerely,

Emily

January 2016

Is this Tom Grodin, father of Emily Grodin? the woman on the other end of the phone asked my husband. She sounded out of breath and fraught.

Now what? I wondered. Tom and I were settling down for the night, getting ready for bed. That the call was tied to our daughter, Emily, twenty-five, went without saying. We were used to such calls, just not what came next.

The police are here, seven of them, she said. Emilys caregiver has been hurt and she needs to go to the ER. Im not sure exactly what happened, but apparently Emily got aggressive and now theres a lot of commotion. Shes very upset. I need you to come get your daughter. Now. Her voice echoed across the room. My stomach was immediately in knots. In minutes, Tom was dressed and out the door.

Thered been issues before, meltdowns, times we needed to go talk with her and smooth things over. Now, though: A caregiver going to the hospital? Seven police officers? Nothing like this.

As I waited for Tom and Emily to return to our Encino home, I wandered from room to room, wanting to change things for her, wishing we didnt find ourselves in this situation, but unable to fix anything. Emily was our only child. A beautiful, amazing, precious young woman. Shes also autistic and pretty much nonverbal. If I asked her a question, she could give me a yes or no answer, but shed be unable to elaborate, to express verbally her pleasure or displeasure, or to open a line of dialogue with us or anyone else. This limitation made her appear, to those who failed to understand the disability, as if she were locked inside herself and incapable of making decisions or having preferences. She was unable to tell us what it was like being Emily, how the autism shaped her, or the way words, as well as the world, failed her. She couldnt tell us if she had a stomachache or a toothache or needed help in some way. She appeared to live in an isolated space to which we had repeatedly tried to gain access and failed. She was alone in there.

When her inability to communicate was coupled with frustration, the often dramatic-looking symptoms of autismcompulsive and/or repetitive behaviors, self-injury, disruptive vocalizationemerged. Simply stated, she could have meltdowns. They could happen with anyone and in any locale.

It had been a little easier when she was younger. While her outbursts, even then, were difficult, now that she was a fully grown adult and commanded space, her voice was loud and powerful, her physical presence imposing, and the incidents had grown harder to manage. Emily could act differently than other people, often in ways that could be startling.

When the call came, she was living in an apartment in Westwood with support staff and participating in a transition program at the UCLA Extension school for students with special needs. This was all part of our experiment in independent living for her, a goal encouraged and valorized by so many of our friends raising young adults with special needs. We wanted to give her the skills shed need to live as independently as possible, preparing her for a life without Tom and me to watch over her, to speak for her, to be the buffer between Emily and the world. Since her very first diagnosis, we worried how Emily was going to manage in this world when we were gone and no longer here to be her intermediaries.

Tom and I had been older parents when Emily arrived. While most parents of young adults at our stage of the game were now looking forward to seeing their children make independent lives for themselves, we were simply hoping to get her on footing stable enough to manage without our constant intervention.