Friday, July 29^th, 2011

Dear Buddies,

This past Friday I made a trip out to Ngu Han Son (the Mountains of 5 Elements) to conduct field visits with my project manager, Anh Tuan. After compiling care-giving guidelines for children with disabilities in the comfort and isolation of Children of Vietnam’s (COV) office, I was ready to meet and to present my brochures to the most important members of our organization: the children and their families.

The first home we visited was Chi Hue’s. Her family had just moved again (the eighth time over the last few years) due to new construction in the surrounding neighborhoods. Despite the constant relocations, Chi Hue manages to take her 3 year old son, Trung, to physical therapy every month; Trung has cerebral palsy so continuing his motor exercises is an important routine. But, as best as she can, Chi Hue can make time for only a few therapy sessions every month. She explained whatever exercise the family performs at home in between the sessions are inefficient. “We do their exercises at home but we don’t have the machines the [physical therapy] center has,” she explained. I considered her perspective on the need for therapeutic equipment and I wondered how the exercises mentioned in the brochures would measure up to her expectations.

Showing her the brochure, I explained that Trung could practice proper posture by completing small tasks with objects found around the house. A round, plastic tube used as a chair could help Trung sit upright and a sloped, wooden plank used during playtime could help him straighten his back and neck (image 1). I wanted to demonstrate that, even without major equipment, it is possible for Trung to make progress with a little creativity and resourcefulness. Chi Hue, however, expressed uncertainty over the use of household items for therapy and was hesitant about reading too much text.

“Trung cannot keep his legs straight when sitting on the floor—we need 2 family members to keep his body from slouching over—how can the exercises you suggest change this?” I was glad for her skepticism.

“The exercises won’t dramatically change his condition, however, they can supplement his therapy especially since the sessions are infrequent.” I explained. “It will take time but with constant repetition, the muscles in Trung’s neck and legs will strengthen.” I asked her to look over the brochure again and to evaluate its content. After some deliberation and confirmation with Anh Tuan, Chi Hue seemed encouraged by my suggestions and asked me to include more of the same type of diagrams in the revised brochure. “I like the diagrams, they are the most helpful. The text is not so bad to read.” I felt elated; I hadn’t expected to build any bridges during our first meeting but Chi Hue and I had established a mutual understanding.

As we departed, Anh Tuan asked me to consider the following situation: if I was a parent with a basic education and my child lived with a disability, what is my priority? The answer was obvious to me: the most effective way to care for my child. So, he ventured, what is effective? To Chi Hue, textbook explanations of disabilities translate poorly into care-giving instructions. Effective for her is the use of illustrations over words and their direct translation into action. Chi Hue also places great importance on her son’s performance on therapeutic equipment. On the other hand, I find textbook explanations conducive to research, a process that helps me map out a protocol. Without the urgency of caring for a child, I do not need to place so much emphasis on a machine; I am free to explore all the available treatments. Clearly, context has everything to do with our differences in understanding.

Going into the site visits I was hopeful about connecting families to the right resources. Now, I have hope but also a clearer sense of context and practicality about my work.

With metta,

Dan