Mexico

At a Groundbreaking Institute in Mexico, Children With Disabilities Reimagine What’s Possible

In 1994, doctors told Esperanza Valdéz that her son would die within months. Thirty years later, she’s proved them wrong — and helped hundreds more children like him.

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At a Groundbreaking Institute in Mexico, Children With Disabilities Reimagine What’s Possible

Lilette A. Contreras, GPJ Mexico

Esperanza Valdéz spends time with her son, Rubén Iram Bustamante, at their home in Cuauhtémoc.

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CUAUHTÉMOC, MEXICO — “I felt I had failed, that I had failed my husband, my entire family,” says Esperanza Valdéz, remembering the moment when she received the news that her son, Rubén Iram Bustamante, had been born with microcephaly. It was Nov. 9, 1994. Her life has never been the same since.

Last year, Valdéz commemorated the 20th anniversary of the Instituto de Entrenamiento para Niños con Lesión Cerebral y Trastornos del Aprendizaje (ENLAC), an institute she co-founded to support the development of children with brain injuries and learning disabilities. Before her son was born, she aspired to be a homemaker. Instead, she’s expanded the sense of what’s possible for hundreds of children like hers.

When she was pregnant, Valdéz, then 23, fainted frequently due to low blood pressure, but her doctor did not detect any problems with the fetus. She later learned this was the cause of her son’s condition.

Microcephaly is a congenital condition in which the size of the baby’s head — and often the brain — is smaller than expected. It can cause motor and vision problems, convulsions, developmental delays, intellectual disabilities and hearing loss. In Bustamante’s case, doctors said he only had months to live.

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Lilette A. Contreras, GPJ Mexico

Esperanza Valdéz reflects on paintings by students at ENLAC, an organization she co-founded after her son was diagnosed with microcephaly.

“I thought he was going to die all the time,” says Valdéz, who recalls having lived through those times in “a constant state of anguish and uncertainty.”

Determined to save her son, Valdéz traveled to The Institutes for the Achievement of Human Potential, in the United States. The group of nonprofit institutes was founded to support children with brain injuries in achieving well-being through techniques that bolster their development.

After returning to Mexico, Valdéz shared what she had learned with other families in the municipality of Cuauhtémoc, in the northern state of Chihuahua. In 2003, she co-founded ENLAC to promote the physical and educational development of people with brain injuries, mental disabilities and learning disorders. So far, the institute has helped over 900 families, and has worked to promote inclusion.

“With fire and hammer blows”

Before Bustamante was born, social work did not figure into Valdéz’s plans. She wanted to “get married, have lots of children and manage her household.” However, as she became involved in her child’s development, she realized she had to shift her focus.

“I thought my goal must exist for some good reason, that my pain should be put to use to learn and to be better,” she says.

Valdéz was spending eight to 12 hours a day doing exercises with Bustamante, which physically and emotionally exhausted her but also motivated her to meet up with other people. She joined forces with her friends, Ana Corral and David Gavaldón, who were also parents of children with disabilities, to found ENLAC and support their children’s development together.

“I thought my goal must exist for some good reason, that my pain should be put to use to learn and to be better.”

The institute’s goals have evolved over the years. First, the space they had rented was a largely inaccessible residence. They also lacked the materials they needed to carry out their activities, so Valdéz decided to work to raise funds for ENLAC’s maintenance. “It’s a job that never ends,” she says.

“ENLAC started out with all kinds of shortcomings,” says co-founder Corral. “The space it was in, personnel, materials. [It was] practically with sheer will that the project got off the ground.”

Lilette A. Contreras, GPJ Mexico

Since her son was born, Esperanza Valdéz has helped children with brain damage reach their potential.

Over time, the institute raised more funding and expanded its capacity to provide more services. It currently operates based on a learning method that combines work with motor skills, equine therapy, swimming, gymnastics, artistic expression and medical care, among other elements.

Valdéz describes her life as “an iron ladder, forged with fire and hammer blows.” And she feels proud of it because it has allowed her to help more people.

Increasing visibility and inclusion for people with disabilities

As ENLAC has grown, so too has awareness of its work to achieve inclusion for people who have brain injuries or mental disabilities, affording them with more opportunities.

“The day I met Esperanza, I asked her if my 4-year-old daughter would be able to walk. She responded, ‘And do you believe it?’” says Denver Penner, father of Yunique, who has a brain injury. Penner left his home country of Canada in search of a way to ensure his daughter’s well-being.

Fifteen years have since gone by. Today, Penner looks on as Yunique — who no longer needs a wheelchair — gets ready for college in the US.

Valdéz says making sure the people who receive support from ENLAC achieve independence is key. To that end, the institution has developed programs and alliances with local companies.

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Lilette A. Contreras, GPJ Mexico

Jaqueline Manríquez, left, takes out a violin while Esperanza Valdéz, center, and Evan Valdés make silly faces during an artistic expression class at ENLAC.

One of them is Sabor Alegría, a program that provides training to young people from the institute to prepare them for a working life. Program participants make yogurt from scratch, and upon graduation from ENLAC, they have the opportunity to work at Reny Picot, a Spanish multinational company that makes dairy products for export.

“Support from the community is essential for [us] to continue striving so that every day there are more young people integrated into society, willing to demonstrate that there is no obstacle so great that it can overcome the will of a human being who is determined to realize their dream,” Valdéz says.

Although many people who have contact with ENLAC support the organization’s work, “there is a proportion of society that sees it as a negative,” says Humberto Ramos Molina, a member of its board of directors. He says some families do not see it as a viable method due to the time demanded from parents and caregivers to support their children’s development.

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Lilette A. Contreras, GPJ Mexico

Esperanza Valdéz relaxes with her son, Rubén Iram Bustamante, at their home in Cuauhtémoc, Mexico.

While Valdéz understands that each situation is unique, she steadfastly defends ENLAC’s development method. Bustamante’s well-being and his greater autonomy have transformed his life and the dynamics of her whole family.

Her feeling of having “failed” was left in the past many years ago. Today, her son can complete certain tasks, like taking a shower and dressing, independently. And she recognizes that, thanks to him, she has been able to do things she had never imagined.

“In the beginning, I didn’t know what to do with him,” she says. “Now, I wouldn’t know what to do without him.”

Lilette A. Contreras is a Global Press Journal reporter based in the city of Cuauhtémoc, Mexico.


TRANSLATION NOTE

Shannon Kirby, GPJ, translated this story from Spanish.