East Coachella Valley nonprofit GANAS helps empower parents with disabled children

As a behavior interventionist, Martha Barragán was used to going into people's homes and working with them and their children who needed behavior services. But when she walked into Maria Martinez's home in 2013, she felt she was in the presence of a "unicorn."

Barragán would help families and children across the Coachella Valley with daily routines. During these appointments, parents were more often than not as involved they could be, often just leaving it up to the expert. But that wasn't the case with Martinez.

"I was a little bit confused. I was waiting to be introduced to the family, and it seemed like there were two behavior interventionists working with the kiddo," Barragán recalled. "I was like, OK, where are the parents?"

It turned out it was actually Martinez on one side of her son, who was non-verbal, listening, asking questions and participating in daily routines, and the behavior interventionist on the other. That level of parent participation was "amazing" and "not common at all," Barragán said, and she immediately felt that "this kid was going to go somewhere."

For Martinez, it was important for her to understand her son's diagnosis, focus on prioritizing goals and implementing them outside of therapy sessions, she said. When she learned of his non-verbal diagnosis when he was around 2, she decided to quit her job as a mortgage loan officer and "be his voice and his guide."

They didn't know it in that moment, but both women would join forces to found GANAS ― translated in Spanish to mean "give it your all" ― with a mission to empower and educate families, particularly those living in the eastern Coachella Valley, who have loved ones with disabilities.

"I really love the eastern Coachella Valley. I was born and raised there my entire life and still live there now," Barragán said. "I'm really about trying to empower that community."

The two mothers also encouraged each other to continue their educations. Barragán, who had a bachelor's degree in psychology, went on to pursue her master's degree in applied behavior analysis and later a board certified behavior analyst certification. Martinez also earned a master's degree in ABA, a type of interpersonal therapy in which a child works with a practitioner one-on-one.

What got the GANAS gears turning was when Martinez asked Barragán to speak at a parent group about ABA services. The key takeaway she shared is if parents know what's going on with their child and how to implement strategies being shown during therapy sessions, "their kids would make so much positive progress," Barragán said.

Professionals told Martinez her son would never be verbal nor attend a typical school with his siblings, and there was a chance he would be removed from her home when he turned 18, she said. Rather than accept that fate, she was determined to do the best she could for her son.

"I started to learn as much as I could about his condition," Martinez said. "I watched a lot of videos, and it was scary what the future looked like and that did hurt, but that was kind of my fuel to motivate myself and give it my best shot."

Martinez connected with Inland Regional Center, a nonprofit that provides support to people with intellectual disabilities, autism, cerebral palsy and epilepsy, and got involved in her son's therapy sessions. By the time Barragán came into her home, Martinez said she felt comfortable picking behavior interventionists' brains and getting involved in decision making. Barragán's further "brought the magic tools that were needed," Martinez said, which led to her son, later diagnosed with autism, making even more improvements.

Martinez's son, 13, has been in general education classes since kindergarten and is "high-functioning" and verbal, she added.

Barragán later saw just how much of an impact parental involvement and persistence makes when she also noticed delays with her son's speech around 2014. Even when she tried to get help from professionals, "he wasn't acknowledged as needing help," she said.

"I immediately thought, 'I know what to do,'" she said. "I started doing signs, teaching him certain signs to communicate things, but also pairing it with words."

She was "grateful" that she had her background and expertise to help her through that period ― her son experienced other behavioral issues, which later led to an autism and ADHD diagnosis in 2021 ― but also recognized other families might not know what to do in similar situations. That's what made GANAS even more vital.

During the height of the pandemic, the organization had to rely on Zoom calls, but it has pivoted to in-person services with families. With its Padres con GANAS program, which Martinez oversees, parents develop their advocacy skills and address barriers to improve their child's progress. Martinez explained the program, through workshops, study sessions and consultations, helps families understand contracts, vocabulary that's used to better communicate needs and the hierarchy in place at different organizations. There are also webinars and small groups available.

Over the last three years, the women have seen parents make great strides. Martinez recalled one mother being quite a distraction during a presentation and asking nonsense questions a few years ago. Fast forward, this mother was recently able to successfully escalate her concerns to a top official regarding in-home support services.

"She was able to get the support the she needs to sustain that family because when you don't have the services, your whole family suffers," Martinez said.

Some families might struggle with even greater communication or technological barriers, but GANAS finds way to individually take on their case. Barragán noted one farmworker couple, whose native tongue is an Indigenous language from Mexico, while Spanish is their second language. The mother is not comfortable speaking Spanish, while the father can read but not write in the language. Online webinars wouldn't help them because neither could feel confident taking notes or understanding all the information shared, so Barragán instead focused on one-on-one biweekly consultations with them, she said. She helped guide them through their daughter's need and did role-playing scenarios so they knew how to effectively communicate what their child needed to succeed in school. Barragán added they were given an iPad to also access email and use voice-to-text features.

"That couple was the embodiment of GANAS," Barragán said. "Instead of saying, 'Oh I can't write or I can't do this,' ... they still were like, 'We're going to figure it out and we're doing this together.'"

Even though GANAS is a young organization, it has its sights set on growing and serving as many people in the community. In November, the organization introduced a program for siblings of those with disabilities so they can connect with others in similar situations, ask questions and get information. Barragán said the nonprofit is working on expanding that group, as well as creating a self-advocacy program for older kids with disabilities.

To bring things full circle with how Barragán and Martinez met, GANAS also wants to provide ABA services in the community. It's a way for the group to be an example of "providing quality therapy that is more humanized and connected with individuals," Barragán said.

Those interested in learning more about GANAS can visit www.theganas.org, email info@theganas.org or call 760-423-4767.

Coverage of nonprofits in the Coachella Valley for The Desert Sun is supported by a grant from the CIELO Fund through the Inland Empire Community Foundation. Ema Sasic covers entertainment and health in the Coachella Valley. Reach her at ema.sasic@desertsun.com or on Twitter @ema_sasic.

This article originally appeared on Palm Springs Desert Sun: Nonprofit GANAS works to empower parents with disabled children