Participants in iBookClub: Ann Marie
I met Ann Marie in a preschool class in my teaching as a speech language pathologist. She was an attractive, beautifully dressed child looking at a book as she was with friends in an afternoon class. That should have given me a clue. Little did I know how much she with the diagnosis of Rett syndrome would teach me what communicate to interpret and what was important to her throughout the three decades.
She looked so intently and yet used language in a different way from others. Oh yes on two rare occasions she spoke clear appropriate words, “potato” to ask for her family forbidden French fries at a food mall and “Goldilocks” to enter into naming the book to read in the school library. I videotaped her as we read how the chimpanzee, Kiko, independently created ASL signs to communicate. She was attentive to my physical support of her arm as she pointed to letters on a letter board when she was in primary school. Both reading and pointing were questioned by many others.
Most recently after she received a speech generating device she could access with her eyes she inspired me to search for a way for her to share her reading. Together with her mother and a gifted educator friend, we created an iBookclub of Pasadena. “If Heidi living with a grumpy grandfather could make the best of her move to Clare’s house and learn to read, I believed that Ann Marie with the ongoing support of her family and provision of books for reading, Ann Marie would learn to read and write too. Her occupational therapist had agreed that given the right support Ann Marie had the capabilities.
How could she demonstrate her receptive and expressive language skills in “this day and age?” How could she get others to understand her communication? Peggy, Ann Marie’s mother recognized and advocated for her daughter. Ann Marie was assigned a class with an experienced educator that incorporated music, art, reading, writing in everyday activities. They went to the library and checked out books. They attended church school with the support of a peer “shepherd” to push her wheelchair to class and stay with her even to access a single message of her memory verse for the day.
Peggy graciously gave permission for me to observe her communication for hours at home with her best communication partners. In writing the case study of Lisa Joy for my dissertation, Peggy gave me the words and sentences that explained her daughter’s communication more accurately and sensitively. The faith integral to our families were realities in communication, a topic of great importance in communication (one to preach about, write about, and lived). As a mother who knew her day to day, Peggy pursued getting the speech generating device she could direct with her eyes and asked me to support these possibilities.
In this photo, Ann Marie and her mother are at the library participating in the iBookclub. The story of reading was recorded on the my Tobii with the illustrations to share with the others in the club some of whom were not yet readers. The technology was simply an assist to her communicative capabilities. The club reinforces the truth that most of us need assists with communication partners who provide physical, mental, emotional, and educational support. Support takes many forms. How easy to look away and not see the possibilities in this photo.
Do we not see the time both Ann Marie and Peggy spent programming the messages and attaching the illustrations? Do we see that the librarian knew how to connect her speech and writing device to the overhead project so everyone could see her contribution? What we see is only part of the story? Where was the story of getting dressed, her caregiver meeting the club after driving and finding the empty handicapped space, and getting inside the building with pushing an access button?
Who were the other participants who were looking forward to seeing her? Sure we needed to focus on her reading and speaking with the SGD, but isn’t there usually a story behind the story in the photo? If only we could hint at the possible captions beside the photo.