I Have Been Buried Under Years of Dust

by Valerie Gilpeer

  No thoughts of things undone

  More care to the game than to the lesson

  Like shoelaces double knotted

  Soon to come untied

  Children step into a world uncharted

  Marking sure to feel their way to pride

  Yes it’s beauty through the eyes of a child

  It is only later the world leaves us beguiled

  RARE WORDS

  I do not have the words to be able

  To tell you what it is like in my mind.

  Even though my senses are unstable

  The rest of me is perfectly aligned.

  My lack of words don’t mean I can’t convey;

  For I know exactly how to describe

  What I just physically cannot say

  Despite how statements from brain don’t transcribe.

  And so I type my expressions instead

  One slow letter, single words at a time

  To pour them onto a screen from my head

  And if I’m lucky I can make them rhyme.

  It’s not typical but works fine for me;

  Rare girl swimming in a typical sea.

  SILENT POET

  Living in a world of constant noise.

  Horn blares. Baby cries. Dog barks.

  Alone sits a quiet poet. A silent poet.

  Tap tap tap.

  A silenced poet tapping through a leaf blowers song.

  A quiet girl sifting through melodic words in mind.

  Competing with the spoken words and rantings of a television

  program better viewed if muted.

  A silent poet deep in thought.

  Water drips. Papers rustle. Birds screech.

  A silent poem begins to breathe.

  Lost to the noise if not for a gift of quiet air from its maker.

  Flowing breath from herself in the form of fancy words and dramatic pause.

  Doorbell rings. Heavy footsteps. Voices heard.

  A welcomed distraction silently pulls the poet away.

  The sound of an ancient door creak greets the ears of a silent poet.

  A one way conversation entertained politely.

  For guarantee of the unbroken silence that will surely follow.

  Tap tap tap.

  A silenced poet tapping though the song of the moons whispered glow.

  A song so soft almost impossible to hear.

  A quiet companion to a silent poet.

  Bidding goodnight and sweet dreams to the constant noise.

  With the only sound left to be heard. That of a silent poem.

  Tap tap tap.

  FOREIGN SOIL

  A flood of newness which surrounds my senses,

  To label them simply as sights and smells would be unjust.

  For they are so different, beyond unique

  From that of which I am accustomed,

  So that each particle enters my system and whispers to me

  That I am present in a place unknown to my experiences.

  Sun that sets late and defies circadian,

  And time zones that cause alarm

  Only comforting to the traveler that has exhausted body and mind

  When rest comes in the unslept sheets of a strangers bed.

  And when morning arrives, and the city calls

  With synchronized sounds of muffled pedestrians and the blare of foreign auto,

  It tempts from sleepy dreams and warm blanket

  That discovery awaits.

  And a new day that asks for method of transport

  By way of a flailing hand, or plastic cards, or tired soles.

  And asks to be acknowledged by strange architecture and the notice of language not your own,

  A constant reminder you are so far from home.

  Oceans between point of reference and point of the destiny,

  Too far to possibly carry you back on a free whim.

  This unknown land that begs your acquaintance,

  And speaks to you through neon signs and song unheard.

  Reminds you endlessly of an empty belly

  Through wafts of herbs and season that drift carelessly with you down stony streets,

  And invite you into cozy holes to feed the appetite and quench parched tongue.

  With menu handed by an eager tender, who decrypts the unknown selections to tired traveler,

  Reminding you in accented word that this foreign land to them is home.

  Which sparks a thought so foreign on its own,

  To imagine a life lived on this unknown soil,

  To think that these things so foreign to me

  Are the comforts and acquaintance of another,

  Born to these lands and these flavors, these scents,

  Strange though to me, but home to the other.

  And this brings visible joy to my masque, to know that this place is loved

  In a way that only a home can be loved.

  And even more strange than these lands and the languages and customs and sights all unique,

  Is that I attempt to see my own land as the traveler would see.

  And I wonder what would shock them, surprise them, impress.

  What sights would overflow them, speak to them,

  And marvel them as their land has done to me?

  But I push this away, suppress it so that

  Nothing interrupts the constant stream of this land that is not my own, not my home,

  But has welcomed me, asked of my attention, craves so deeply that I never forget,

  That it sends me off with trinkets and toys

  With its name scribbled or inked across them.

  And those items, while special and sacred in my own box,

  Can do no justice, as the memories also cannot,

  To fill my senses with a foreign land.

  IMPOSSIBLE TO EXPLAIN

  It would be a stretch

  To suggest

  That I could possibly describe

  The experience that I live inside,

  Inside this body of mine

  That doesn’t behave quite as tame

  As the things I think inside my brain.

  I wish I could tell

  Just how well

  I have had to teach myself

  How to be

  A thinking person in the world around me

  Because anything else would have been easy.

  I don’t like easy.

  And speaking of easy,

  I could have just been

  Content to stay quiet and watch the world spin

  Without contributing a single thing

  Or even speaking a single word

  That meant something to anyone.

  Thats what I could have done.

  Its impossible to explain

  Even harder to understand

  The way my life has

  Been a series of events all chosen by me

  Despite a lack of planning my motor clearly

  Or being able to speak my mind.

  So instead I write mine.

  It would take some time

  To really convey

  How different I function in every way

  And how most things you do

  Are different for me

  My wiring built a little unique

  And the sensory experience I do seek.

  I have tried my best

  To make my words known

  To write the ways I’ve learned to grow

  Made the effort to let people see

  Deep inside the autistic mind

  The inner workings of a brain refined

  The being of someone who has not consigned.

  So you see

  Try as I might

  I could write and write, yet still not quite

  Tell it all and tell it true

  But try I will, continue to pursue

  Explaining the impossible

  Until I have explained it through.

  WRONG

  They
said I had no way to understand the world.

  And that I would never know a whole life.

  That I was too this and I was too that

  And that I couldn’t grow to be who I am.

  They were wrong.

  They told me to calm down, they said to relax.

  But they failed to provide me with the map

  That would lead me in the proper direction.

  They were wrong.

  So I wrote the map myself

  And despite their lack of help

  I found the way to go without asking anybody else.

  Because when they were wrong

  Little did they know

  That I would be determined to help myself grow.

  I would figure out the way

  Find my own straight path

  And once my own was written I’d help others write their map.

  They’ll see they were wrong

  To think so small of me

  To assume that I’d be any less than the person that is me.

  I think maybe if I’m honest

  I should have thanked them all along.

  I am everything I am today because

  They were wrong.

  Acknowledgments

  There is no question that Emily was the direct beneficiary of the federal and state laws that mandated the delivery of services and opportunities to those with disabilities in the public school. Had it not been for tireless advocates who demanded the changes and the political leaders who agreed, Emily would not have had the opportunities and choices she did. While access to what Emily was entitled to did not come without the initial guidance of Valerie Vanaman, Esq., a true advocate for those with special needs, and the ongoing vigilance by me and Tom, the fact is that the law was on our side. We were lucky that the 1990s and the early 2000s were truly the heyday of opportunity for services, at least in our district. The constellation of services that she received, and not one single one or the other, most definitely fostered growth in Emily and got her to where we are today.

  Since Emily’s diagnosis in 1993 the number of children diagnosed with autism has increased exponentially. There is a real need to acknowledge that for those on the spectrum who are minimally speaking or nonverbal, traditional speech therapy is not always the answer to solving the problem of communication. It is time to recognize that all forms of AAC including FC must be considered legitimate methods. We are hopeful that our story, and that of so many others whose lives have been changed through FC, will result in the inclusion of FC as a viable and useful tool on the road to improving communication for those who would otherwise be left out of the conversation.

  We would like to thank the incredible Michael Palgon, who believed in our story early on, championed it, and knew it was one that the world should hear and worked tirelessly to shepherd it to fruition, and Rabbi Sherre Hirsch, who introduced us. Thank you to Bernadette Murphy for being a friend, adviser, and literary guide in this process. We would also like to thank our wonderful editors at William Morrow, Mauro DiPreta and Vedika Khanna, for their insight and care with this manuscript. Thank you to Darlene Hanson for being the early beacon of light who made us aware of FC and promoted it, and provided guidance to us and so many others in accessing it, as well as to Lindsey Goodrich, a gifted communication partner, whom we loved from the very first moment we met her and who always believed in what was possible for Emily. Thank you to Stephanie Lewis, who continued to carry Emily on the journey, to Nik Jayaram, who inspired so much in Emily, and to Marta Amaya, who has been with us through the good, the bad, and the awful.

  Lastly, to Tom, who never wavered in his love for us despite all our challenges: thank you, loving husband and father, for being our rock, our source of comfort and caring—that is, for everything.

  Note from the Authors

  All italicized text is original to Emily and has not been edited by anyone including the publisher of this book. All of Emily’s work is first draft.

  Emily works with many different facilitators. All of them use the same methodology of touching the shoulder of her shirt and no part of her body.

  Emily uses an iPad which typically sits on a stand on a desk or table.

  Authenticity of the work can be found in Emily’s recollection of childhood and family events and personal experiences, all of which were unknown to any facilitator.

  About the Authors

  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, Valerie’s husband and Emily’s dad, in Encino, California.

  Discover great authors, exclusive offers, and more at hc.com.

  Copyright

  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)

  About the Publisher

  Australia

  HarperCollins Publishers Australia Pty. Ltd.

  Level 13, 201 Elizabeth Street

  Sydney, NSW 2000, Australia

  www.harpercollins.com.au

  Canada

  HarperCollins Publishers Ltd

  Bay Adelaide Centre, East Tower

  22 Adelaide Street West, 41st Floor

  Toronto, Ontario, M5H 4E3

  www.harpercollins.ca

  India

  HarperCollins India

  A 75, Sector 57

  Noida

  Uttar Pradesh 201 301

  www.harpercollins.co.in

  New Zealand

  HarperCollins Publishers New Zealand

  Unit D1, 63 Apollo Drive

  Rosedale 0632

  Auckland, New Zealand

  www.harpercollins.co.nz

  United Kingdom

  HarperCollins Publishers Ltd.

  1 London Bridge Street

  London SE1 9GF, UK

  www.harpercollins.co.uk

  United States

  HarperCollins Publishers Inc.

  195 Broadway

  New York, NY 10007

  www.harpercollins.com

  * The DSM was initially drafted in 1952. It has gone through several revisions and is currently known as the DSM-5. Due to modifications in the DSM in the years since Emily was diagnosed, when reference is made in this text to the DSM, pleas
e always consider the year of the reference.

  * We are taught that we have five senses to give us information about the world: sight, hearing, touch, taste, and smell. However, there are actually two additional senses: the vestibular system (focused in the inner ear, giving us information about our head position and how/if we’re moving in space) and the proprioceptive system (giving us information about our body’s position in the world: which way we’re facing, how close we are to other objects, et cetera). Since many of those with neurological disabilities, including those with autism, have underdeveloped vestibular and proprioceptive systems, swinging and rocking are activities they gravitate toward. These behaviors calm them because they stimulate these systems and assist in providing the information that helps the person to integrate that data with their other five senses.

  * Autism is a disorder that can affect the entire body. According to the National Center for Biotechnology (NCBI), “adults with autism had significantly increased rates of all major psychiatric disorders including depression, anxiety, bipolar disorder, obsessive-compulsive disorder, schizophrenia, and suicide attempts. Nearly all medical conditions were significantly more common in adults with autism, including immune conditions, gastrointestinal and sleep disorders, seizure, obesity, dyslipidemia, hypertension, and diabetes. Rarer conditions, such as stroke and Parkinson’s disease, were also significantly more common among adults with autism.”

  * Non-attorney advocates can also provide this service to parents. But as cases progress, a lawyer may be needed.

  * A school district is also required to offer an IEP to students attending private schools if they otherwise qualify. It amounts to a contract with the family, and serves to detail the basis of eligibility, the classroom placement, and services that the district is offering to address a particular student’s needs, at least as seen from the district’s perspective.