Impossible Dream

By Gail Buckley and Meaghan Buckley

"If someone does not come along and provide us the opportunity, . . . we will never know what we are missing or capable of. And neither will they."-Anna

Anna's quest to understand how the brain operates might have started out as an escape from the confines of her autistic existence, but when her housemate Daniel is in grave danger of losin

• Language: English
• Publisher: Koehler Books
• Release date: Feb 17, 2022
• ISBN: 9781646636082

Book preview

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Praise for Impossible Dream

"Cleverly crafted and insightful, Impossible Dream explores brain functions through the voice of an autistic woman with a brilliant mind. She doesn’t speak but types up a storm and shares an insider’s view of scientific possibilities as she helps a friend who disappears from their care home. Highly recommended for scientists, educators, and parents."

—B. Lynn Goodwin, Managing Editor of www.writeradvice.com, Author of Talent and Never Too Late: From Wannabe to Wife at 62

"Imagine the difficulty of making friends and communicating with the spoken word, all because your body does not pay attention to your mind. Gail Buckley probes the mysteries of autism, enabling us to hear from a young woman with a unique and intelligent brain. In Impossible Dream, this woman finally gets to speak for herself and make incredible gains. An important read for those in the special needs community and beyond."

—Henry G. Brinton, Presbyterian Pastor, Author of City of Peace

There is so much we don’t know about the brain, and so much more to learn. Autism should not be pathologized, and it is not a behavior disorder. When we make hard and fast assumptions about the way people think or don’t think without truly knowing, the label we give to that person follows them throughout their life. The label can vastly limit their potential and destroy self-esteem. On the other hand, when we presume competence, we open a door for the person to pass through. Whether they do or not is not always a conscious choice: they may need the supports and accommodations to do so. Meaghan and Gail have provided a provocative glimpse into the autistic experience, as well as a fascinating peek into what lies ahead with artificial intelligence. The message is clear: we need to go directly to the source to learn about autism. This book should be required reading for any professional who wants to work with the autistic population.

—Lisa A. Keller, MS, CCC/SLP, AAC Specialist; President, AutCom (Autism National Committee); Owner, Supported Communication Services, LLC

"Impossible Dream is beautiful! It has so many positive implications for the future of humanity, particularly for the millions struggling with physical and mental disabilities. This has broader implications than just dealing with autism.

Perhaps the greatest takeaway from this book is a feeling of appreciation. We have a greater appreciation for those with autism, not just because most of us don’t have to endure living with autism, but because those with autism are actually gifted and capable in many unique ways.

—Steven Seril, OutstandingCreator.com

"Gail Buckley’s book, Impossible Dream, is a story that is driven by the perspectives of her real-life daughter, Meaghan, and the fictional main character, Anna, who both type to communicate and give us insight into how non-speaking individuals with autism understand their disability. The book takes us on Anna’s journey to learn more about the neurology of autism and potential treatments that can improve how the neurological, sensory/motor systems of autistic individuals function in everyday life."

—Pascal Cheng, MEd, Communication Specialist, Howard Center

tit

Impossible Dream

by Gail Buckley

with Meaghan Buckley

© Copyright 2022 Gail Buckley

with Meaghan Buckley

ISBN 978-1-64663-607-5

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means—electronic, mechanical, photocopy, recording, or any other—except for brief quotations in printed reviews, without the prior written permission of the author.

This is a work of fiction. All the characters in this book are fictitious, and any resemblance to actual persons, living or dead, is purely coincidental. The names, incidents, dialogue, and opinions expressed are products of the author’s imagination and are not to be construed as real.

Published by

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To dream the impossible dream,

To fight the unbeatable foe,

To bear with unbearable sorrow

To run where the brave dare not go

To right the un-rightable wrong

To love pure and chaste from afar

To try when your arms are too weary

To reach the unreachable star

This is my quest,

To follow that star

No matter how hopeless,

No matter how far.

To fight for the right

Without question or pause,

To be willing to march

Into hell for a heavenly cause.

And I know if I’ll only be true

To this glorious quest

That my heart will lie peaceful and calm

When I’m laid to my rest

And the world will be better for this

And one man, sore and covered with scars

Still strove with his last ounce of courage

To fight the unbeatable foe

To reach the unreachable star

The Impossible Dream (The Quest). Lyrics by Joe Darion, composed by Mitch Leigh. This song was written for the 1965 Broadway musical, The Man of La Mancha.

This book is dedicated to all those who struggle with disabilities and all those who serve them. In particular, I would like to dedicate it to Lisa Keller, a woman who goes way above and beyond in helping those who struggle to communicate reach for the stars.

CONTENTS

Introduction

Chapter 1

Chapter 2

Chapter 3

Chapter 4

Chapter 5

Chapter 6

Chapter 7

Chapter 8

Chapter 9

Chapter 10

Chapter 11

Chapter 12

Chapter 13

Chapter 14

Chapter 15

Chapter 16

Chapter 17

Chapter 18

Chapter 19

Chapter 20

Chapter 21

Chapter 22

Chapter 23

Chapter 24

Chapter 25

Chapter 26

Chapter 27

Chapter 28

Chapter 29

Chapter 30

Chapter 31

Chapter 32

Chapter 33

Chapter 34

Afterword

Resources

Acknowledgments

INTRODUCTION

My daughter, Meaghan, has autism. When she was twenty-nine-years old, an occupational therapist who was doing auditory training with her had an idea. She sat Meaghan in front of an iPad, lightly supported her arm at the wrist and asked Meaghan if she knew the location of the Statue of Liberty. Amazingly, Meaghan’s finger moved forward to hit the letters that spelled out New York. The therapist probed further; did she know what happened on 9/11? Meaghan typed the answer, never taking her eyes off the keyboard as she slowly but deliberately selected each letter to respond to the question correctly.

For the first time in almost thirty years, Meaghan was able to say what she wanted to say, not just parrot the rehearsed phrases she had memorized to communicate her basic wants and needs. She burst into tears, which she later told us meant that she was very happy.

By rights, her newly discovered ability to spell and communicate in full, insightful sentences should have been celebrated but, as often happens when something appears too good to be true, Meaghan’s breakthrough was met with skepticism and denial. How could someone with autism, who couldn’t even take proper care of themselves, possibly be intelligent enough to write with such wisdom and compassion?

And it didn’t help that she initially needed resistance support to restrain her from hitting the keys too fast. There was no understanding of what assisted typing was, and therefore there was no acceptance of it. Meaghan was no longer allowed to attend therapy sessions and she began to pull her hair out by the roots. "There is no hope for my future," she wrote.

Fortunately, fate intervened and Dr. Christopher McDougle, head of the Lurie Center for Autism, bravely broke with the prevailing bias and protocol against facilitated communication by deciding to conduct a study on the effectiveness of the controversial technique for those with autism. The study consisted of around twenty adult participants, Meaghan being one of them.

She was bound and determined to master independent typing because she knew that she would never be believed unless or until she did. Lisa Keller, a speech and language pathologist who had extensive training in alternative means of communication, was recruited to teach the typers in the study. No one was better qualified and no one was more dedicated, not just to getting the most out of each participant but also to training us parents to take over where she left off after the twenty-week study concluded. Under Lisa’s guidance, Meaghan progressed from light support on the wrist to light support on the elbow, the shoulder, and then on the back.

Six months after the study concluded with the initial participants, Dr. McDougle had some members of the group in for a follow-up meeting. His attention was drawn to Meaghan because she had progressed by that point to needing no support. I did hold her non-typing hand to keep her calm, which I would do in any case, whether she was typing or not. Dr. McDougle came over and sat next to Meaghan. He asked her, Meaghan, what is autism?

She took a beat and then began to type. Autism is the sensory upheaval of the brain.

He sat back, no doubt astounded but also convinced beyond a shadow of a doubt that Meaghan was not only doing the typing but also that she was highly intelligent. He became one of many fans that Meaghan would win over in her crusade to convince the naysayers that a better understanding of autism was essential if she and others like her were ever going to be able to lead the lives they silently yearned for.

Meaghan has told us, I have goals in my life just like everyone else. An important one is to teach others about autism. Understanding is the key to getting better services and results. I want to spread the word that autism is not something to fear but rather something to have respect for.

So, this was the impetus for The Impossible Dream, and Meaghan is Anna. The story is fictional, but the voice is very real, garnered from our numerous exchanges over the years as we worked tirelessly to build her confidence and independent typing skill. Meaghan really does believe that there can be a better future for everyone with disabilities, not just those with autism. And this better future can start today, if minds are open and made aware of the possibilities.

MEAGHAN’S INTRODUCTION

(Meaghan’s typed presentation at her ISP meeting in 2019)

I have listened enough. It is time for me to speak. I have a lot to teach the world about autism. I think that there is a lot of misunderstanding when it comes to how those of us with autism are perceived by the neurotypical world. If we don’t do something, it is presumed that we can’t do it, when in fact we might just not want to do it because it is too simple or elementary or because we are tired of it or bored with it. Our brains need to be continuously challenged or we will grow restless and frustrated and act out. Our behavior is our language. Unless we are allowed to type.

For me, typing is a natural means of expression, kind of like your voice is for you. I process language as written words. I always have. When I was first given the opportunity to type, I was so happy to finally have a way to communicate my thoughts. But then my voice was taken away from me and I was devastated, so devastated that I started pulling my hair out. I loved my long hair. I hated losing it. But I hated losing my voice more.

And I really felt sad that no one believed in me. It is important to me that you believe in me, so I would like to set the record straight once and for all. I have autism. I am also very intelligent. These two things are completely compatible. My autism has no bearing on my intelligence. Autism makes it difficult to control my body, but my mind functions fine. The problem is the disconnect between my mind and body. My mind tells my body one thing, my body does what it wants. So, in my mind I am able to formulate thoughtful language but what emerges from my mouth is often rote or repetitious.

When I type my body still wants to be in control. I have to focus hard to continuously fight the impulse to hit the same key over and over again. The funny part is, the part you doubt most about me, my facility with words, is the very least of my problems when it comes to typing. It is the visual motor part, not the mental part, that is the real challenge.

You see, my brain has no problem with words and grammar. If language processing stopped at the thought level, I would get an A plus. The breakdown happens when it comes to combining words with sound, motor with sensory. The more intricate the neural processing task, the more ways my brain finds to screw it up. My mind just can’t get coherent messages through to my mouth. Not just speech. I can tell myself to smile or stick my tongue out until I’m blue in the face, but my mouth won’t respond.

However, I can point my finger, and I can use my mind to direct where that finger goes. This may not seem like a big deal to you, but when I discovered that my finger could do the talking it was the very best day of my life. For almost thirty years all my words and thoughts were trapped inside my head and suddenly they were being set free. Typing opened up the Pandora’s box of my mind—and then it was slammed shut, without my having a say in the matter.

Those of us with disabilities need to have a say, and for many of us having that say requires an alternative means of communication. Requiring slight support does not mean that we are stupid or incapable. It just means that it is much, much harder for us to do the simple things that you neurotypicals take for granted.

Those of us with autism are not crippled but rather blessed with having heightened sensitivities and abilities. That is, if you look beneath the surface. Having autism is a strength not a weakness. Not being able to communicate this to those who so misjudge us is the ultimate irony and tragedy.

My mind uses the information from my eyes to tell my brain the world is crazy.

—Meaghan Buckley

CHAPTER 1

January 2022

It was no ordinary gathering. I knew that immediately by the silence. Oh, there was the occasional sound of a stool sliding back against the polished floor, a muffled cough or throat clearing, but there was no talking. And that was odd because I wasn’t in a library or a church, and the room was hardly empty. It was large and open, with high vaulted ceilings, walls of glass, and sleek oblong tables made of teak and spaced at precise intervals.

Around each of these tables sat small groups of individuals wearing different types of headgear. Some wore what looked like bathing caps with holes and small wires protruding out of them. Others wore headsets with goggles attached. But everyone had one on, whether they were seated or standing or walking around. Those that were seated all seemed to be focused on a tablet screen before them, while those that moved around appeared to be oblivious, both of their surroundings and each other. They moved as if in a trance, totally engaged in the media—or whatever it was—that their headsets supported.

I stepped into the room, leery because I had no idea how I had gotten there. I was hoping that I would recognize someone or that someone would recognize me, but no one even looked my way. Perhaps I was invisible? Emboldened by this lack of notice, I walked over to an empty stool at one of the tables and climbed up on it. In front of me was a tablet and a black headset with holes and disks evenly spaced around the crown. I debated whether or not to put it on but figured, when in Rome, so on it went. It didn’t feel too bad, lightweight and airy.

I was beginning to consider my next options when the tablet in front of me sprang to life. The screen started filling with text, even though I hadn’t touched it. It was like the news ticker that runs at the bottom of a TV screen, with lines of information populating one after another as I sat there.

The final words in the string were: Hello, what’s your name?

I looked up and around but, just as I suspected, no one was interested in me. I began searching for a keyboard app to type my name when it suddenly appeared on the tablet screen.

Welcome, Anna.

Okay. Now I was beginning to freak. I was afraid to do or say anything. Suddenly WTF! appeared on the screen in front of me.

When I looked up, I saw everyone around me smiling. WTF!

Again, the screen flashed my three-letter thought. I didn’t like this. I mean, I was used to not getting the joke, so that didn’t bother me. But not knowing what was going on was making me feel even crazier than I normally did. How did this machine know what I was thinking? Bad enough that it was reading my mind and turning my thoughts into text. But it seemed to be sharing the exchange on everyone else’s screens as well.

I ripped off my cap and stood, intending to make a beeline for the exit. But when I looked around, all I saw were walls of floor-to-ceiling windows. No doors. No way out . . .

•••

Anna, time to wake up! A soft, melodic voice is calling me.

Spoken words. Slowly I let go of my panic and let myself emerge into consciousness, grateful that I am safe in bed and not in that weird, futuristic place where I probably would have fit in if I hadn’t been so freaked.

I open my eyes to the sight of Sarah’s familiar, kind face grounding me to the here and now. Anna, you need to take your meds. Open up. A spoonful of sweet-tasting applesauce enters my mouth. I swallow.

I still feel a bit disoriented, but that is nothing new for me. Eggs, I mumble hopefully.

No, you’re having oatmeal for breakfast today. Maybe you can have eggs tomorrow, she says, smiling at me.

Maybe tomorrow, I repeat automatically, swiping stray strands of hair off my face before flopping back down on my bed.

Oh no you don’t, Sarah chides gently, no sleeping in today. The van will be leaving in one hour and you must be on it. Use the bathroom and I will be back to help you dress, she urges, turning to walk out of the room.

As I lie there, I hear the sounds of the house coming alive. Floorboards creaking, a toilet flushing, a shower running, the refrigerator opening and closing, the staff talking and laughing. I know I should get up but lying here feels so good. I hear Sarah’s footsteps walking back down the hall. Uh-oh.

Princess Anna, why are you still lounging around in bed when I told you to use the bathroom? Come on now, up and at it.

I do as she says, standing up and shuffling off into the bathroom while she lays out my clothes for the day. At least I am fortunate to have my own bathroom. It still feels surreal to me how swiftly my life was upended and suspended by the death of my parents two years ago.

It happened so suddenly. They were driving home from a night out with friends when a drunk driver ran a light, hitting their car head on. They were both killed instantly, which everyone said was a blessing. But it hardly felt like a blessing to me. For me it felt terrifying. Everything I counted on for comfort and security was suddenly withdrawn from my life and, for a time, I honestly felt like I ceased to exist as well.

I mean, who was I without my parents? One minute I was Anna Whittier, daughter of Mary and James Whittier of Lynnfield, Massachusetts and the next, I was nobody. I couldn’t rely on my brother, Tom, because, at the time, he was almost as much of a basket case as I was. He’s two years younger than I am and had just been accepted into medical school. Much as we love each other, we both knew he was in no position to shoulder the full responsibility for me.

Fortunately, it turned out my parents had had the foresight to make arrangements for me in the event of their death. Since neither of them had any siblings and I was already twenty-four years old, I was to be placed in a group home. They had even narrowed down the selection to this one, Arbor Haven. In a way I was not surprised, as Daniel Livingston is here, and my mom was best friends with his mom. Actually, Daniel’s mom was the one who handled the arrangements with the state and before I knew which way was up, I was living here.

That was almost two years ago, I reflect as I finish on the toilet and wash my hands, and yet sometimes it seems like a lifetime ago. Transitioning from living at home, where my parents doted on me, to living here, where I am just one client out of many, has been one of the hardest experiences I have ever had to go through. It has also made me more aware than ever of the limitations my autism has imposed on my adult life.

•••

After dressing, I go and sit at the breakfast table with my housemates. I share this group home with four others. Three men and a woman. All of us are on the spectrum, but aside from that diagnosis, none of us have much in common.

Cassie is the oldest and has been here the longest. She has a mop of curls on her head, is short, plump, and always happy. Unless you take away her fidgets. She goes loony tunes if you mess with any of the collection of trinkets that she hoards as her treasures.

Then there is the Incredible Hulk, Tim. He is huge and clumsy. I mean really clumsy. He is always tripping over and bumping into things. Fortunately, he talks. A lot. He has perfect recall of all the dialogue in the movies and shows he has watched. So, if it sounds like the TV is on, that means Tim is on the loose and you’d best stay out of his way.

Alex and Daniel round out the foursome. Alex is average height and weight with black hair that is always flopping about because he hates having it cut. He loves sports and is very agile and athletic. In the two years I’ve lived here, I haven’t heard him utter one word. But I think he is very smart because he is able to figure out how to do things without being told.

Daniel is the one I am closest to in the house since we grew up together. He is tall and thin, with bright red hair and lots of freckles—although the freckles have faded over the years. He and I have limited language, but our rote words and phrases suffice to communicate our basic needs. Daniel and I are so in sync that sometimes we don’t have to say anything to know what each other is thinking.

So, anyway, we’re all pretty different. Actually, for being the only girls in the house, Cassie and I are a study in opposites. I am not very tall, but I am at least a head taller than she is. I am thin, despite the fact that I eat more and faster than the boys, and my long blonde hair has never been known to hold a curl.

If you’re wondering why I haven’t mentioned facial features, it’s because they don’t generally register with my brain. When you’re on the spectrum, what you look like really doesn’t matter. At least to us. Saves me from doing a lot of primping. Okay, any primping. To be honest, I can’t remember the last time I looked at myself in a mirror.

We don’t talk or look at each other when we eat, so basically, we just shovel food in our mouths. Except for Daniel, who doesn’t seem to have much of an appetite.

Even if we could talk, we wouldn’t have much to talk about because our lives are pretty much the same every day. No use asking each other, What are you doing today? when all of our answers would be the same.

We follow a routine schedule because that is supposed to keep us from freaking out. First, breakfast. Then, exercise on the treadmill. Then, day program. Then, lunch. Then, more day program. Then, more exercise. Then, dinner, shower, and bed.

Of course, I am oversimplifying. We also take lots of walks and go on weekend outings intended to help us fit into the community.

I often wonder about this. Are we supposed to fit into the community, or is the community supposed to accept us as we are? It’s the whole square pegs into round holes thing.

Because honestly, I am quite happy with myself as I am. Having autism has its challenges, yes, but it also has its perks. Like having plenty of time to ponder stuff.

Right now, for instance, I am wondering how spotted the bananas have to get in the fruit bowl on the table in front of me before they get used or tossed. I’m guessing two more days. On the wall to my right is a hanging calendar marked with appointments, events, and reminders to the staff that I have memorized. The calendar is not intended for us, but I check it out daily anyway just to keep tabs on what should be happening. The staff have no idea that I know when they are messing up. They do know that I am not going to tell on them.

I guess you could say I am a tad mischievous. I tend to get bored easily, so sometimes I like to spice things up. This is easy to do when you live with a houseful of hyper-sensitives.

I take a couple bites of soupy oatmeal and raise my head to eyeball Tim’s hairline. He hates it when he