Every day I ask myself the same question: Am I closer to getting services for Vivian?
I began my journey with autism in 2009 as a volunteer in Cusco, Peru. I had an open mind and open hands, ready to do whatever. I told the school director to put me wherever needed me most. He chuckled and led me to the multiple and severe disabilities classroom.
Not sure what to anticipate, I opened the door and found a classroom full of lively kiddos. My students for the next 3 months, they taught me about communication: They showed me that biting is not aggression, but an eagerness to tell a need. The seeming dysfunction of the classroom was fostered by a brilliant teacher, often chastised for her refusal to use corporal punishment. Many instructors, parents, and community members believed that these children were possessed, a token of Black Magic, or simply insane. They relied on instinct alone to keep the behaviors at bay.
Who is Vivian? Vivian captured my heart. Described as anxious, unwilling, combative, and aggressive – she was a 9-year old child in need. Vivian taught me about functional behavior assessments – while dressing her one day, I noticed her shoes were three sizes too small. Sure enough, when her shoes were removed, the ‘aggression’ lessened. She wasn’t quite as ‘anxious’, not so ‘combative’. We became so intertwined during the school day, staff began calling her my “hijita” (daughter). I visited Vivian’s home many times – washed clothing with her mother, listened to her fears, and watched Vivian cling to her.
Five years later, I am working the job of my dreams. As the Director of International Partnerships for the Global Autism Project, I have the unique opportunity to meet children like those who enchanted me during my introduction to autism in Cusco. What I found through my work though, was both enlightening and disheartening. I deeply desired to change the world for the kids in Cusco, Peru who first stole my heart. However, not only was this time and resource-consuming – it wasn’t the most culturally effective way to make a difference. While I developed intense and beautiful friendships with the instructors at my first placement, instruction coming from me would not be most effective. What we needed was a local champion with skills, language, and background to reach out to the school in Cusco. As I asked myself – am I closer to getting services for Vivian – I found that often the answer was “no.” We were making progress for many children around the world – I saw firsthand the evidence-based services implemented through our training and gains made by both students and staff. How, though, could I reach this rural community?
I wrote up plans for dissemination, plans for outreach, and plans for expansion. I studied the culture more than ever before, contacted local individuals, and kept track of my first students to the best of my ability. Now – for the first time, we have a plan in place. We have more than 10 years under our belt training local professionals, and we believe that there is hope for the Vivians and Arturos of Cusco and their parents. Global Giving has approved our program for rural outreach, the project that has commanded my senses for years. We’re finally closer to getting those children in Cusco the services they so need. We are finally closer to instilling hope in a community that has forfeited the notion.
Our vision at the Global Autism Project is of a world where people with autism worldwide have access to services that enable them to reach their potential. My personal vision is a world where my Vivian has access to services that will lighten her burden and struggles – and access to services so that the hopeless notions her mom first spoke to me five years ago can be lifted. Am I getting closer? YES. Finally, yes.
Get involved. Share, join the movement. Tell your friends. We’re going to change the world, and you get to be a part of it. They can too.
Sara Costello is the Director of International Partnerships at the Global Autism Project.