Last May, I was very happy to see that I had a text message from the mother of one of my former students, Stephanie Costabel. I always love to get updates on how my former families and students are doing. When I opened the text, I was so excited to read “Hey!!! Thought I would share this …it’s a synopsis of a book I wrote” Of course I looked at it and quickly ordered the book! The book arrived in a few days, and I immediately read it. I was so impressed with the way Stephanie was able to express and explain the emotions her family went through and the challenges they had in raising their daughter with complex medical needs.
On the back of the book Stephanie explains that she wrote the book because…” I would like to offer hope to those new to the journey of parenting a medically fragile, special needs child. I want to share the realities we lived- with the challenges, the pain, the joy, and all we have learned. I would like to increase awareness, sensitivity, and familiarity to what life is like as a parent to a medically fragile child.”
I was very moved by the book because although I had been a frequent visitor to Stephanie’s home when I was her daughter’s Early Learning teacher of the Deaf and Hard of Hearing and I knew something about the medical issues they were dealing with, I had no idea what dealing with those issues on a day-to-day basis was like. How many days they had to spend in hospitals and how many times they almost lost their daughter. Stephanie is open and honest in her book about how this affected her and her family emotionally and physically. How they suffered through the painful times and celebrated the victories.
I think that knowing these things is so important for professionals working with families with children with complex medical needs. Donna Carpenter, the coordinator of the Kentucky DeafBlind Project has a presentation “Using Photos to Tell Your Child’s Story to Their Educational Team.” In this presentation she outlines the importance of sharing these stories. She talks about how educational teams mostly have a medical model understanding of their student and recommends that educational teams “promote the shift from a medical checklist to a whole child perspective.” In the presentation, Donna outlines several ways that parents can share their stories with their teams.
Learning about parents’ experiences and finding ways to share family stories through pictures with families can make us more empathetic as teachers and help us understand so much more about the child than their medical diagnosis. Activities such as these can build trust with families and show them that they are highly valued as individuals.
Patty Dischinger, M.Ed.
East Carolina University DeafBlind Project Teacher Support Program
Technical Assistance Consultant