Authors: Elizabeth M. Bonker
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4.
Wall Street and Autism
:
Living in Two Worlds
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6.
Elementary School
:
Looking for Ability, Not Disability
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7.
Community
:
A Little Help from My Friends
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8.
Nature
:
Listening to Trees in Harvard Yard
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9.
Hopes and Dreams
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Relentless Parenting
11.
Families
:
We All Have Our Stories
12.
Suffering
:
A View from Tibet
14.
Healing
:
A Wing and a Prayer
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Epilogue
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“How People” Gallery
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Acknowledgments
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Notes
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Back Ads
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Back Cover
The Quiet Miracle of “How People”
We read to know we are not alone.
C. S. Lewis in William Nicholson's play
Shadowlands
A healthy and happy baby
B
eauty 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.
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Bright Future
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When you see
A tree
Think of me
Growing strong and tall.
When you see
The sun shining brightly
Think of me
Tough and mighty.
When you see
The water on the lake
Think of the future
I plan to make.
Me
Strong
Mighty
Free
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.
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God Is Everywhere
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I could not find the sea
So I sat by a tree
To think of all the wonderful things
God has made for me.
The birds of the air
The animals everywhere
Flowers in bloom
My own bedroom
Food on the table
Poetry and fables
Just to name a few.
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.
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The Things I Know for Sure
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There is a God.
I am loved.
The sun will shine.
I will survive autism.
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.
We All Fight a Battle
Be kind, for everyone you meet is fighting a great battle.
attributed to Philo of Alexandria
Meeting all of my milestones
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Me
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I sometimes fear
That people cannot understand
That I hear
And I know
That they don't believe I go
To every extreme
To try to express
My need to talk.
If only they could walk
In my shoes
They would share my news:
I am in here
And trying to speak every day