One Boy's Strength Inspires Change in An Entire Region

Alex engaged in an orientation and mobility session with his teacher.
April 5, 2012

Alex was born deaf and blind in a remote, mountainous village in Guatemala. An orphan by the age of four, Alex ended up in a group home with no family and no way of interacting with the world or communicating his basic needs.

Helen de Bonilla met Alex in 1997 when she agreed to act as a godmother for a group of orphans. The smiling boy slept peacefully in Helen’s arms during the baptismal ceremony and she immediately felt a strong bond. Helen returned to the group home to visit Alex on a regular basis and when he went in for an eye surgery, she volunteered to take him into her home and care for him during his recovery.

Helen, her husband Jose, and the couple’s five children were inspired by Alex’s strength, determination, and joyful spirit. The family fell in love with this boy who could not speak but who they believed had something important to contribute to the world. So they decided to adopt Alex.

The Bonillas wanted to send Alex to school but they were turned away from the School for the Deaf as well as the School for the Blind. There were no programs in the country for children with multiple disabilities.

But the Bonillas refused to give up. They believed Alex had a right to an education just like every other child, regardless of his or her unique needs.

From Isolation to Community

The Bonillas contacted Perkins International’s office in Argentina and were invited to a seminar for parents of children with deafblindness.

The seminar, held in Buenos Aires in May of 1997, brought together parents from Argentina, Brazil, Chile, Bolivia, and Mexico. All of them shared the Bonilla family’s determination to create better opportunities for their children. The seminar taught the Bonillas that children like Alex are fully capable of learning when teachers and schools receive specialized training and support.

That’s when the Bonillas took matters into their own hands and began a classroom in a single room next to their house, teaching Alex and two other children who were deafblind. With support from Perkins International, the schoolhouse turned into the first program dedicated to the education of children with multiple disabilities in Guatemala. Named Fundacion Alex (FUNDAL), the program formally opened its doors in 1998.

Today FUNDAL is working with 180 children at multiple sites in urban and rural Guatemala, serving families of all economic levels and crossing cultural barriers by reaching families from indigenous villages where Spanish is not the primary language. The program is recognized by the Guatemalan Ministry of Education as the country’s only resource for children with multiple disabilities. Just over a decade ago parents of children with deafblindness like the Bonillas felt completely isolated and didn’t know where to turn for help. FUNDAL changed that reality but there are still more families waiting to become part of a community of support and hope.

We’re Only Just Beginning

On February 22, 2012, FUNDAL held an inaugural ceremony at its new Center for Learning and Resources. The new facility, funded by grants from CBM and the European Union, is located along a bus route in Mixco in the Guatemala City Metropolitan Area, will allow FUNDAL to reach 300 families by the end of 2012.

The mayor of Mixco spoke at the inauguration and said FUNDAL is more than a local program – it’s a national resource. The center will offer trainings for educators who work in mainstream schools in Guatemalan Sign Language, orientation and mobility, speech therapy, and learning braille.

“The location and mission of this new building brings the education needs of children with multiple disabilities to the mainstream of social planning and justice in Guatemala,” said Steve Perreault, Perkins International Regional Coordinator for Latin America, who attended the inaugural ceremony and was greeted by FUNDAL staff and students like a member of the family.

Together We Can Do So Much

Helen Bonilla wrote a poem to express how Alex inspired everyone around him and brought hope to countless families, including her own: “Alex has taught us … That it is possible to be happy, without sight or hearing … That every person, despite his limitations, has something unique and special to give … And by working together families and professionals, with consistency, tenacity, effort, but most important by giving of ourselves, we can make the impossible possible.”

Helen’s words only begin to hint at the sacrifices and setbacks that come along with making lasting transformation and improving the lives of children like Alex. Perkins International exists to empower individuals like the Bonillas and to bring them into a community of expertise and understanding.

To date, four staff members from FUNDAL have graduated from Perkins International’s Educational Leadership Program (ELP), which brings educators from around the world to Perkins’ Watertown, MA, campus for an academic year. Diana Isabel de Bonilla Sinibaldi, Alex’s sister, completed the program in 2006. During her time as an ELP, Diana observed innovative teaching strategies being used in Perkins classrooms. She shared her experiences and successes with fellow ELP participants and returned to FUNDAL excited to try out fresh ideas. She went on to teach her colleagues what she learned, multiplying the reach of her specialized training.

In 2009, FUNDAL’s education director, Carmen Lucia Guerrero, became the first person in Guatemala to receive a master’s degree specializing in the education of children who are deafblind. Carmen attended a Latin America University Program in Costa Rica through a scholarship provided by Perkins International.

Lissett Rivas is director of FUNDAL’s program in Hueheutenango, located in the highlands of western Guatemala. Lissett became the fourth educator from FUNDAL to visit Perkins as part of the ELP Class of 2011-2012. In February, Lissett took a break from her studies and returned home to celebrate the opening of FUNDAL’s latest expansion - the Center for Learning and Resources in Mixco. Lissett started in FUNDAL’s Huehuetenango branch when there was just one classroom and one teacher. As she watched her program grow over the past four years and went from being a classroom teacher to the education director, Lissett felt a deep sense of purpose.

“FUNDAL is like a light that reaches into homes that were once in darkness,” she said. “We help parents and children achieve what they once thought impossible.”

Alex’s sister Diana believes the transformations FUNDAL has made for children with disabilities, their families, and the larger community, began with one boy whose determination and strength touched the lives of everyone around him. “My inspiration is my deafblind brother Alex, who has transformed the lives of so many people, inspired changes in an entire country and allowed me to discover my life’s vocation … without saying a word,” she said.

You Can Help Us Meet the Challenges that Lie Ahead

While so much has changed, there are still children with multiple disabilities throughout the region who need better educational opportunities. FUNDAL identified 300 children throughout Guatemala and Perkins International identified another 30 children in Honduras and El Salvador whose teachers need specialized training and support.

Perkins International is excited to continue helping FUNDAL reach more of these children with a new four-year FUNDAL/Perkins International Latin America project supported by the Lavelle Fund for the Blind, Inc.

The project will promote FUNDAL as a model program for other countries in Central America and will include training for professionals in El Salvador and Honduras as well as training for the Ministry of Education on ways to include children who are deafblind in all Guatemalan schools. The project will benefit 120 teachers and special education supervisors and 100 parents, improving education for 200 children with multiple disabilities.

Ultimately, Perkins International and FUNDAL are working to create a regional environment where children can learn, achieve independence, and have the opportunity to transition smoothly to adulthood.

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