Each year, we ask the students from Saint Catherine University that come on our expedition with us to reflect on their experience. I am always inspired by the students – they are such wonderful young women, and occasionally men. They give me great hope for the future. This is their contribution for this year. We hope that you enjoy it.
As the students working with Eleanore’s Project this year, we’ve learned more than we thought possible. In school, we learn about caring for the family as well as the client, and here, we’ve seen proof of how important it is. Many of the families we’ve met will go to great lengths to care for their child. One family traveled for two days by bus (one way) to come to Eleanore’s Project.
We also learned that family members are the experts on their children. They know best what the child enjoys, how they communicate, and what they need to be comfortable. Many parents took very active roles in the construction of their child’s chair and sleep system. They had valuable input about the child’s normal positions and when they were in pain or happy. The looks on the parents’ faces when we were able to use their suggestions to create a more comfortable and supportive seat for their child were heartwarming as they could really see that they had made a difference and knew that they were important members of our team.
We could tell you numerous examples of how we see the therapists working with Eleanore’s project provide family focused care, but one in particular shows how this is done. One 9 year old child, named Antony, was coming for his first chair. His dad seemed very interested in the process so the technician working on the chair took him to the workroom and taught him to make most of the adjustments and changes that were needed. In the US, though teaching families about how equipment works is important, repairs and adjustments are usually just a phone call and quick visit away. However, in Peru it is important to give families the tools and education they need to maintain the chair for the long run.
The faces of the children and their families upon getting upright in a chair for the first time and being able to see the world around them, moving the wheelchair on their own, or being able get out into the community with their child will stick with us forever. All in all, it’s been an incredible experience of learning, both from the members of the team and the clients and families that we’ve met. Each of these experiences have influenced us deeply and we feel lucky to have been a part of this amazing project.