I Am in Here: The Journey of a Child with Autism Who Cannot Speak but Finds Her Voice

I Am in Here

Revell

Chapter One

The Quiet Miracle of "How People"

We read to know we are not alone. C. S. Lewis in William Nicholson's play Shadowlands

Beauty bursts forth in the most unexpected places. Tiny flowers push their way through cracks in the asphalt of city streets. And often we glide past these quiet miracles without paying them much heed.

But I can't anymore, because I live with one of those miracles: my thirteen-year-old daughter, Elizabeth. She is profoundly affected by autism and cannot speak. Yet she has summoned the courage to remain optimistic. She has shattered the silence of autism and found an escape from its shackles in the beauty of her poetry.

Even with all of her challenges, Elizabeth's determination and optimism never cease to amaze me. At each stage of her life, she has defied the labels assigned to her. Although she was diagnosed by the so-called experts as mentally retarded at age two and a half, her intelligence has now been tested in the genius range. Her poetry tells us about the inner world of autism and shines a light on the world around us.

Because of autism, Elizabeth lacks the fine motor skills to write with a pen or pencil. She types out one letter at a time, hunting and pecking with her forefinger. This process is slow and tedious, so beyond her schoolwork, she seeks the efficiency poetry affords. Each of Elizabeth's poems, and the accompanying brief reflections on them, is a treasure for us. They have been virtually our only way of understanding who Elizabeth is, what she believes, what she feels, and what hopes and dreams she has for her life. This is what we share in this book.

When I asked Elizabeth how she wanted to introduce her book, she wrote:

I want people to find peace in my book. I want them to read my prayers with understanding. Be at peace. God loves you.

As usual, her words are better than mine, and for that reason we have put all of Elizabeth's writings in boldface so that you can easily pick them out. The stories in between are written by me, from the perspective of a mom, with lots of help from some dear friends.

The genesis of this book was a group of friends who love books. Every year for the past seventeen years, the whimsically dubbed Select Literate Friends (or SLF for short) stage a virtual gathering of members on paper, which consists of the members' annual letters, copied, bound, and distributed for all the members to read. The irony of SLF is that it is not "select" at all: anyone can join, and many of us are barely "literate." Each person's entry ticket is their list of top ten favorite books. The sharing has now evolved to an annual baring of our collective souls, including painfully honest chronicles of what is happening in our lives.

For the past five years, I have shared with SLF our journey through the daunting maze of autism. Elizabeth's older brother, Charles, also has autism. But in an ironic contrast to Elizabeth's struggle to speak, Charles rarely stops talking. Both children have made great progress over a full range of social, language, and behavioral issues. Both are in mainstream public school with the help of wonderful, dedicated aides. However, the shadow of autism still hangs, in unique ways, over both children, and I cannot and will not rest until they are well.

Each year the response of SLF to each new chapter of our story, and in particular to Elizabeth's poetry, has been overwhelming. To my knowledge, none of these friends has a child with autism, but every one of them knows someone touched by this epidemic. However, I think the response has been about much more than autism. We are all fighting our own battles, and by allowing ourselves to be vulnerable enough to share our struggles, we find hope and gather strength from each other.

Our journey has been full of surprises. Elizabeth's poetry pierces the seemingly impenetrable walls of autism and challenges the stereotypes those walls create. To the observer, she may appear to be disconnected, somewhere off in her own world, but through her poetry she tells us that she is deeply concerned about the people and natural world around her. Although her face is usually expressionless, her writings reveal a mischievous side and a wry sense of humor. She may display few emotions, but deep currents of compassion, frustration, and joy flow just beneath the surface.

God is great. He gives us so much. I know all things are gifts from God. I am thankful for all that he has given me.

Elizabeth has become my teacher, and I am learning to think about life, faith, and relationships in a whole new way. I have come to see the world as divided into "Why People" and "How People." Why People cannot be at peace until they answer the question of why suffering has befallen them. They look backward and ask, "Why me?" How People, on the other hand, ask, "How can I move forward?" Having been dealt their hand in life, their focus shifts to how they can find whatever healing and wholeness is possible.

Our community of How People lifts me up on gloomy days. These courageous How People face their own great challenges with grace and inspire me to carry on. Their determination, like Elizabeth's poetry, reminds me that the light of God's love can brighten even our darkest hours.

I hear a loud "Amen!" from the autism parents of the world. You know deep in your hearts that Elizabeth speaks for your children who can't yet speak for themselves. They want you to remember that they are in there and to keep trying to reach them. Have faith. They are. You will.

In our How community, this little poem has become a mantra beyond autism. I have shared it with others who have told me they have put it on their refrigerators, substituting their own struggles in place of autism. For some it is "I will survive cancer." For others it is "I will survive depression, an ugly divorce, alcoholism, loneliness, poverty, or unemployment." On any given day, each of us is fighting a battle that none of us was meant to fight alone.

I cannot explain why our children bear the burden of autism. I'm no philosopher or theologian, just one of thousands of guilt-ridden mothers scratching and clawing to get our kids back from the tar grip of autism. This book seeks to look beyond that daily struggle to find joy and meaning in our journey.

You will meet some extraordinary How People in this book. Together we are mounting a quiet revolution of hope. We refuse to let our circumstances dictate our destiny. We see each new day as an opportunity to move our lives forward. We celebrate our victories, big and small. We pray for the strength to continue the battle. The How People in this book show us the way.

Elizabeth is a How Person.

This is her story.

Chapter Two

We All Fight a Battle

Be kind, for everyone you meet is fighting a great battle. attributed to Philo of Alexandria

I wrote "Me" to let people know that even though I don't speak, I feel and understand the world around me. I want to be heard and respected. I want that for everyone, especially for people like me.

What is your great battle?

Mine is autism. For more than a decade, I have fought a great battle to heal Elizabeth and Charles. Elizabeth lost her ability to speak at fifteen months of age and fell into silence, but I refused to accept that she was lost, because I could sense her keen intelligence, even when she was a toddler. She had communicated with us, using her sparkling eyes and a growing vocabulary, until the day she was given a battery of routine vaccinations. Within a week, her voice was silenced and all the energy and mischief in her eyes drained away.

Elizabeth was officially diagnosed with autism at the Yale University School of Medicine's Child Study Center on May 16, 2000. It's a day I will never forget.

After my husband Ray and I watched our children complete two full days of testing, we sat in the cramped, windowless meeting room as the Yale doctor joined us and said, "I have good news and bad news for you."

We looked at him breathlessly as he continued without emotion, "The bad news is both Elizabeth and Charles have autism. The good news is you live in New Jersey, which has the best autism schools in the country."

We felt as if the building had come crashing down on us. To this day, I still wince when I hear someone say "good news, bad news."

The doctor talked about the need to get the children into an intensive, one-on-one educational program immediately. Every day mattered.

Searching for any other scrap of hope, I asked him what we could do for the children medically. His answer was essentially "nothing."

At that moment I knew virtually nothing about autism, but I could not accept this answer. We would seek medical help.

That night I took Elizabeth in my arms and cried. "Don't worry, sweetheart," I told her. "Everything will be okay."

She looked into my eyes and blinked hers slowly and deliberately, like a stroke victim, to show me that although she could not speak, she understood what I was saying to her.

I stroked her hair softly, saying, "I know you're in there, honey. We'll get you out. I promise you that with all my heart."

Our journey has been long, and at times I have been in despair and wondered whether I could keep my promise to her. That is why her poetry is so precious: it is her glorious, life-affirming victory. She has always been in there.

Autism manifests itself very differently in Charles. It always has. He did not have the sudden regression but developed language very slowly. According to my mother, I didn't speak until I was two and a half. Charles's older sister, Gale, didn't speak until she was two and a half either, so we weren't too worried when he wasn't speaking at that age. But when he wasn't speaking at three, we were concerned and took him to a local developmental pediatrician who declared that he had a "language delay." For us, as with so many other parents, the A word was not the first diagnosis but the last of a long, agonizing list. Once Yale gave us the A word for both children, the battle was joined.

Every educational and biomedical intervention that we have used with Elizabeth, we have also used with Charles, many times with very different results. That is why this battle can be so maddening for parents. Every child is so different.

Charles is our chatterbox, whereas most of the time Elizabeth appears to be locked in her own silent world. But we have learned through her writing that she misses nothing happening around her. She writes that she is "in agony" because of her inability to speak. Often the only way she can cope is by hitting her head repeatedly with her hand in frustration. The force of her frustration is sometimes so powerful that I feel compelled to put my hand on her forehead to cushion the blows. Times like these are when I most share Elizabeth's agony. I thank God that she has found a voice through her poems, such as this one where she projects herself into a beautiful future by dreaming it into being:

I want to travel and see other lands and people, not only to sightsee but to make a difference. I would like to teach people how to improve their lives, make their space a better place, and be happy and healthy. This is very important to me.

You may wonder how such a young girl with autism and unable to speak found a way to communicate at all, much less with poetry. Seven years ago, in our desperation to connect with Elizabeth, we traveled to Austin, Texas, to see Soma Mukhopadhyay, who had taught her own son, Tito, to "write" by pointing out letters arranged alphabetically on a piece of laminated paper (commonly referred to as a "letterboard"). Tito is now an accomplished author who remains nonverbal and severely affected by autism. We found Soma because she and Tito were featured on the television show 60 Minutes.

Soma has developed a teaching methodology called the Rapid Prompting Method (RPM), which is being used by hundreds of children and adults with autism. She starts off by assessing the student's primary learning channel (visual, auditory, kinesthetic, or tactile) and proceeds to teach them interesting, age-appropriate lessons. The student first answers her questions by selecting choices and ultimately uses a letterboard to write complete sentences.

For those of us who have been blessed to make this monumental breakthrough, Soma is a hero. In the pantheon of How People, she is at the top.

Over the course of several visits, Soma taught Elizabeth to write single-word answers and then full sentences with a letter-board. Soma has found that most of her students are so bright that they have taught themselves to read, but the simple act of pointing to each letter, the initiation of creating words, is a monumental challenge for them. That's why a special approach is needed.

When Elizabeth finally learned to compose complete sentences, one of her first was, "I finally got to talk." Such a simple sentence, but for Elizabeth it represented the end of years of tantrum-filled, lonesome isolation. For me, it was an intense moment of both joy and heartbreak. It was like Helen Keller's signing "w-a-t-e-r" for the first time.

Our children are complex and misunderstood. Elizabeth wrote the "Me" poem included at the beginning of this chapter after one particularly frustrating week with a matched set of speech-language pathologists. The first was an expert in apraxia (disorders of motor planning) and the second was an expert in initiation (getting speech started). After hours of evaluation, the apraxia expert said that Elizabeth's main problem was initiation, and, of course, the initiation expert said that the main problem was apraxia.

These experts, and many others before and after them, could not tell us how such an intelligent child could read words and write poetry but not speak. One even suggested in Elizabeth's presence, "Maybe she just doesn't want to talk?" I wanted to scream. The "Me" poem was her response. When I saw those words "I am in here," I cried tears of pain and delight. She was taking a stand for all those afflicted with autism. Years later, Elizabeth wrote a second "Me" poem in which she tries to explain her daily battle:

(Continues...)

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Excerpted from I Am in Here by Elizabeth M. Bonker Virginia G. Breen Copyright © 2011 by Elizabeth M. Bonker and Virginia G. Breen. Excerpted by permission of Revell. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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