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Chapter Twenty-Seven "Dear Elizabeth, Someday when I have enough time, we'll go and find one... a real, live, honest-to-goodness caterpillar... the type of which spins a cocoon about itself and then waits... for this process to happen, not unlike making a cake from a mix, and where the one-time worm just unravels itself and flutters away. "When it gets out, it seems to know where to fly. Nature seems to point a way for it. Its old tomb or bed or whatever dries up and disappears. It is gone, honey. It is the way of life." This father's letter to his daughter brought me to tears the first time I read it. This poem was part of a father-daughter piece of art. Next to her father's life-like butterflies were Elizabeth 's childlike butterflies and caterpillars, and in large gridded blocks at the beginning of the poem were Elizabeth 's large printed letters. Elizabeth and I had been working together since she was 10, and writing her name was one of her first goals. Not only was I touched by her artwork, something I had a hand in, but also by the profound poem penned by her father. When I first met Elizabeth , she was nearly as tall as I was; she seemed like a puppy, ambling and still "growing into her feet." One of her mother's concerns was Elizabeth 's deportment. Elizabeth 's tall stature belied her child-like wonder and bounding movement. She wanted to be a paleontologist when she grew up; her vocabulary was stunning and her strongest asset. Yet Elizabeth often seemed "lost" in space and in social circles. Later, when she started middle school, she frequently lost her way going between classes, forgetting to look for markers that would guide her. In the first year of treatment, Elizabeth participated in a therapy group in which she worked on both gross motor and fine motor skills. She chased with other children down the school halls on scooter boards playing tag, lined up for rides on a scooter board train, played catch and kickball. The children learned writing in the Rainbow writer's program, practicing rows of letters each in a different color. At the end of a session, children earned stars that they could cash in for their favorite activity on Fridays. However, skill in printing, drawing, art work, and game playing came slowly for Elizabeth. In seventh grade, her parents and I decided to take a new track in her therapy services. Together we designed a community-based instruction program that would develop the skills that Elizabeth would need for adult life. We recognized that Elizabeth 's education needed to prepare her to be a member of the community. This type of program was new in the school district, and the special education director allowed me to implement it and even provided some stipends and travel expenses. While Elizabeth continued to work on basic academics such as writing simple sentences and adding single digit numbers in the class for learning disabled students, she and I employed these skills by writing out an address book complete with friends, family, and emergency numbers. We practiced using her new address book and the phone book to call for information, to report an emergency, or get directions. Having gained this skill, we ventured further out into the community on buses and in taxis. Elizabeth 's comrade in this adventure was her best friend, Shaughnessy, who was in the same class. The two had become best friends in the occupational therapy group. While Elizabeth was expressive with a silly sense of humor, Shaughnessy's words came in fits and starts and were difficult to understand. But Shaughnessy had the common sense that Elizabeth lacked. In many ways they complemented each other. In the fall, we began taking the bus to local recreation spots and the local mall. Making sense of bus schedules, learning where to stand to board the bus, and going to the correct destination became part of the challenges of our weekly treks. Slowly Elizabeth and Shaughnessy gained confidence in depositing the bus tokens and asking for help when they needed it. Shaughnessy, though less articulate because of her disability, had the cooler head and was more logical. She often coached Elizabeth on how to behave when she got flustered. At Christmas time, the pair shopped for their families' presents. They made lists, budgeted their money, and planned the adventure. In public, Elizabeth sometimes panicked. Afraid to speak to clerks, she was impulsive in her conversation and often took flight before completing her purchase. Before this Christmas shopping adventure, we practiced how to ask for help and how to pay for purchases. I taught her the dollar method, so that she was confident enough to pay for her purchases. Elizabeth learned to give the number of dollars that the cashier told her plus one more for any change required; that way she didn't need to count out the appropriate change. This tiny strategy allowed Elizabeth to successfully make a purchase on her own. Although the girls bought only small tokens for their families, it meant so much to them and to their families. They were growing up. Over the weeks of the school year, we walked to nearby stores and grocery stores; we traveled to the local church, where we cooked; and to Elizabeth 's family home, where we cleaned. Although I sometimes feared Elizabeth 's crossing the street on her own or using a knife to slice food, she became confident in herself. The end of the year celebration was a pizza dinner prepared for their families. Elizabeth and Shaughnessy planned the entire menu. (I suggested some "healthy" additions like a salad.) That day they shopped for the ingredients, and later that afternoon they read directions, sliced and measured, and prepared the perfect pepperoni pizza dinner complete with salad and warm rolls. I faded into the background while they rose to the occasion. Though Shaughnessy was certainly more adept at using a knife, Elizabeth insisted on slicing the tomatoes for the salad. Despite her preoccupation with conversing and her intermittent gazing away, Elizabeth safely sliced the tomatoes for the salad. It seems a simple thing, but I was never more proud of her and it really made me believe that she would someday take her place in the adult community. Together, she and Shaughnessy managed to serve a successful dinner to their appreciative families. It gave us all such pleasure to see them proudly serve their dinner. The following fall, I left the school district to study for my PhD. Before I left, I invited all the children and their families to my home. Again I was brought to tears by something that Elizabeth 's father wrote. He read this to the gathering that day: "To Beth on Her Departure: Elizabeth became a butterfly through our years together, and as nature pointed the way for both of us, we fluttered away, on different paths. But she and her family were changed by the process and so was I. Working with families such as Elizabeth 's permanently imprinted my life. It made me realize that as health professionals we do become part of the family, stepping into a very private sphere of family life. In doing that, we have a responsibility to care, as an unofficial "aunt," to foster and further the family's hopes and dreams. Postscript: The piece of artwork referred to in the beginning of the story still hangs in my home and reminds me daily of my life before graduate school. In the years since I have left the community in which Elizabeth and her family reside, I have earned my PhD and taken a position as an assistant professor, teaching future occupational therapists and doing research on families' management of daily life activities when parenting children with disabilities. Copyright © 2003 by SLACK Incorporated.
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