living with autism
The Teacher
by Johanne Kieffer

“Start by doing what’s necessary; then do what’s possible;
and suddenly you are doing the impossible.”
— Saint Francis of Assisi

EVERYBODY HAS A teacher. My teacher appeared out of nowhere, a lightening bolt out of the blue. Structured and rigid, demanding my attention every minute of the day, a rollercoaster ride into an unknown confusing world of silence. Emotions expressed through screaming and kicking, bolting and biting, climbing and jumping. All without fear. All without boundaries. All without a reason why. I had to relearn how to speak, how to see, how to anticipate the next moment. Autism is my teacher.
    You are not allowed to fail. There is always a lesson before you. Your only escape is ignorance: choose to ignore its existence (although you’ll find this impossible.) It’s like gum on your shoe, sticking to whatever it touches. Every time you try to wipe it off, it clings to something else. It never goes away. The lessons are hard and true; unconditional love, acceptance, living in the moment, simplicity. These are the teachings of autism.
    It tries the depths of your strength when your energy is beyond depletion. You will know the joy of the smallest miracle and the horror of its ways to wear you down. It keeps you guessing how to reach the child held prisoner in the silent world ruled by autism. You learn about restructuring time, the language of occupational and speech therapies, the language of Special Needs education and its federal laws. You learn about the brain, and how it responds to diet, vitamin support and alternative therapies. You learn about the endless attempts to attain just one goal, and the costs that go hand in hand with it.
    You learn autism is not accepted by all. You learn you cannot go everywhere and do everything. You cannot console the screams, only try to discern between a cry for help and a cry of pain. You are in demand and autism is in command, twenty-four hours a day, every day.
    You learn to watch your child like a hawk and guard him with your life, how to sleep with one eye open, how to sense when he is sick. You keep track of his eating and bathroom habits and pray he will have a bowel movement on his own, so you don’t have to tackle and struggle with him to insert an enema. You pray you don’t forget to check the b.m. calendar, or forget the last time you gave him medication.
    You learn there are few people that are able to take watch over your child. You learn to live with limited sleep, limited time, limited activities, limited life. No vacation, no sick days, no pay.
    Your reward comes in those small miracle moments, when one word is spoken, or your child’s eyes look directly into yours. You know, for a few seconds, that he is present in your world. It is a school like no other. The life-long learning, never-ending hands-on experience of autism. So, you do what’s necessary, with high expectations of what is possible.
    Who is your teacher?

Johanne Kieffer holds a Bachelor of Arts in Communications. She is a Licensed Massage Therapist and Reiki Master practicing in Eastham. She is also a freelance writer and resides with her two children on Cape Cod.   Photo by Nicola Burnell.

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CapeWomenOnline.com
P. O. Box 720, North Eastham, Cape Cod, MA 02651 | Telephone: (508) 255-5084

Gillian Drake, Publisher
Gillian@CapeWomenOnline.com

Nicola Burnell, Editor
Nicola@CapeWomenOnline.com

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On CreaTing Family
The Healing Power
of Friendship

by Nicola Burnell

FRIENDSHIP IS AS VITAL to survival as oxygen. True friends love us unconditionally, no matter how enormous our mistakes. They never judge us with “I told you so,” or feel threatened by our success.        
    When I left England to “Go BUNAC” (British Universities North America Club) for the summer of 1988, just days after graduating from the University of Keele, my entire family escorted me to Manchester airport. They were showing support for a decision that I knew, even then, would change the course of my life. What was meant to be a three month student exchange program turned out to be an emigration, with nothing more than I could carry in the blue rucksack on my back.
    As I walked through airport security I felt the weight of leaving everyone that I loved behind me. It was an out-of-body-experience. Cool detachment became my mantra, because if I had dared to feel my emotions, I would have lost my mind. The only thing that made this experience bearable was the fact that I was not walking into noman’s land alone—my friend Arlene was beside me.
    Our courage and naiveté clearly outweighed our common sense as we launched ourselves into a series of disastrous events that ultimately brought us to Cape Cod. I felt as if I had landed on another planet. The gray Manchester clouds that had accompanied my childhood were replaced by the deepest and largest blue sky that I had ever seen. Memories of the oil stained beaches of Blackpool were erased by the long stretches of pristine, golden Cape Cod sand.
    Like most exchange students, Arlene and I worked our legs off until the tourists abandoned the restaurants for their off-Cape lives. As the congestion left Main Street and autumn settled over the Cape, I realized that I could never leave. I now live in Harwich, where I am raising two teenage boys, preparing them to take the journey toward independence that I so eagerly took myself.
    I spent the twentieth anniversary of my arrival on Cape Cod at Arlene’s house in Edinburgh, Scotland. Our friendship has survived eighteen years of separation, and, thanks to the Internet, the thousands of miles between us have been reduced to a nanosecond. If Arlene had not been my companion during those first few years in this country, I know that I would be writing a very different story.
    The fragmented, uncertain nature of life can leave us feeling insecure at the best of times. From a total life transition to facing our own death, change waits to greet us with the unfamiliar. Our ability to cope with life’s passages may depend upon whether or not we have a strong foundation of friends to help us through them.
    We typically find friends within our family, career, and neighborhood. As our friendships develop over the course of our lives, we create a network of friends for all occasions. Some of our friends may never meet. But making friends does not always come easy.
    Evidence of the paralyzing effects of isolation is all round us. It is in the eyes of the woman who is too afraid to leave her abusive husband. It is in the frustration of the teenager who hates the world for not listening. It is in the vacant gaze of the woman slumped in her wheelchair, waiting for nothing, in the long, silent corridor of the nursing home. No-one should have to struggle through life alone, no matter what their age.
    This is why I joined forces with Gillian to co-create CapeWomenOnline.com. This website is our way of reaching out to you, inviting you to reach back to us, so that together, we can create a network of support and inspiration for ALL the women of Cape Cod.
    I am fortunate to belong to a wonderful network of Cape women who have helped to fill the void that I created when I left my family and friends in England. They have walked on and off the stage of my life story, stepping back into the wings during specific “growth periods” of mine, then reentering the stage when it was time to reconnect and celebrate the new life emerging from the old story. The birth of CapeWomenOnline.com gives me the opportunity to share some of these amazing women with you.

    The first woman I’d like to tell you about is called Mary (see photo of us above).
    In the absence of direct family support, I turned to my friends to create a surrogate family to play the roles of absent relatives. My neighbor, Mary, is such a friend. During the first few months of my divorce it was Mary, now 85, who met my children, then 6 and 9, off the school bus.
    She understood that I had to work several jobs to rebuild my financial security. She also understood that my children were in desperate need of a safe harbor from the storm of emotions left in the wake of the divorce. It was at Mary’s dining table that my sons drank hot chocolate, ate cookies and did their homework. It was also around this table that Mary taught them how to play Poker, and listened to them as they played Monopoly with her own grandsons.
    A tradition soon developed of our spending the Holidays together. Christmas is always a difficult time for me because I miss my English family more then than usual. Mary recognized this and added a leaf to her table so that my children and I could be a part of a larger family meal.
    This was where the story telling began. With these stories came the opportunity for healing, not just for me, but for my children too. Mary would ask me about my new life, wanting to know how I was coping with being a single mother. She listened as I tried to navigate the unfamiliar waters of raising boys. I was, after all, raised in a family of four women and a much younger brother. With no male frame of reference, I felt unprepared for the role of sole custodian.
    Mary has raised two sons, so when I was confused about what to do with my boys she offered me advice. When I was hesitant to move forward with my own goals she offered me support. Perhaps the greatest offering around the dining table, however, was the humor—there was buckets of it.
    Mary and her husband, Pete, are like a comedy act as they bicker about the facts of the stories of their youth. They discuss growing up in the Depression, in Dorchester and Charlestown in the 1930’s and 40’s. They tell stories of their life in Milton, after they married, in the 50’s and 60’s, before they moved their family to Cape Cod in the late 1970’s. These stories paint a world my children have never seen. Life before texting and computers? How was that? they ask.
    With no television, Pete explains how the kids in his neighborhood entertained themselves playing touch football and street hockey. He tells my sons how there was always a ball game going on after school. Mary recalls how the town would flood the playgrounds so they could go ice skating in the winter. I’d watch the exchange of glances across the table as the generational divide dissolved into a huddle of friends sharing a really, really good meal.
    Although Mary is an excellent cook, it isn’t her food that nourishes us so much as her kindness and willingness to open her heart and to share her family. When her grandsons visit from Connecticut, Mary “gets a kick” out of knowing that their first port of call is my front door, looking for my sons.
    It is now my time to give back to Mary. When she was recently diagnosed with cancer, I found myself raging at the injustice of it all. Why would someone who spent her life being so kind and generous to others be given a burden that is so cruel? Being Catholic, Mary believes that we are never given more to carry than we can handle. I have to believe this too.
    With no magic wand to fix this problem, I initially felt helpless. I found myself being forced to dig deep into my soul to find peace with this sudden reality. When I offered Mary a Reiki treatment one afternoon she graciously accepted. As I sat beside her, my palm resting over the tumor, she closed her eyes and allowed me to become the channel for the healing energy that passed between us.
    I know cannot cure my friend, but I can offer her my time, and I can witness her continuing journey. I can share with her my stories about raising my boys and realizing my dreams, and I can listen as she continues to share the stories of her long and fascinating life with me.

Nicola Burnell is a Reiki practitioner and writer. In 1997, she founded First Light of Cape Cod, where she teaches Reiki, a variety of women's empowerment workshops and creative writing classes. She also works as a personal and business consultant, writer and editor. Nicola, who lives in Harwich, is a single mother of two teenage boys. She can be reached at  firstlight@capecod.net

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