While most five year olds are gradually building their independence – learning how to feed, dress and groom themselves – Hector Garces depends on his parents to do a lot of these things for him.
“Our son wears diapers and cannot talk so he uses nonverbal cues to communicate with us,” said Hector Garces. “He can still walk, but the hardest part is realizing that our son’s illness will get worse.”
Hector suffers from a rare, genetic and incurable disorder called Sanfilippo Syndrome Type A. Children with this disease are missing an essential enzyme that breaks down a complex sugar called heparin sulfate. When this sugar accumulates in the brain, it can cause progressive brain damage, learning disabilities and behavioral problems. Many children with this syndrome lose their ability to walk, talk, eat and even breathe.
While every parent endures stress, studies show parents of children with developmental disabilities experience depression and anxiety more often. For the Garces’ family, they’ve learned how to cope with these emotional challenges thanks to a new support program offered at Texas Children’s Hospital.
Dubbed “From Stress to Strength,” this empowering program provides a much-needed support network for caregivers and equips them with life skills on how to emotionally care for themselves while being excellent caregivers to their children.
“Parents learn how to use their character strengths to reduce stress and practice exercises to incorporate gratitude, forgiveness and optimism in their daily role as caregivers,” said Texas Children’s geneticist Dr. Christian Schaaf, an assistant professor of molecular and human genetics at Baylor College of Medicine and a researcher at the Jan and Dan Duncan Neurological Research Institute at Texas Children’s.
Schaaf and his Baylor and Texas Children’s colleagues – Dr. John Belmont, Madelyn Gillentine and Susan Fernbach – modeled this program after a Vanderbilt University curriculum course called Positive Adult Development. The program consists of two, 4-hour workshops and is split into one-hour blocks, with each block focusing on a different coping mechanism such as how to “accept and let it go,” “recognize what is important in the moment,” and “be mindful of what is and what is not in my control.”
“Our plan is for these workshops to become family-driven,” said Susan Fernbach, director of genetic outreach at Texas Children’s, “and that parent leaders will serve as facilitators for some of the sessions where they share their experiences and explain how they handled particularly challenging situations.”
Since the program’s launch in April, the Garces family has learned how to channel their anxiety into positive action, while not wasting energy on things that they cannot control.
“A powerful aspect of the program was realizing the power of forgiveness,” Garces said. “The program helped me pause and think about our son’s situation from a different mindset. After meeting with other families, it was a great feeling to know that we are not alone.”
Schaaf says programs like “From Stress to Strength” can be enormously helpful to families transitioning from feeling overwhelmed and alone to embracing their child’s and family’s strengths.
“I am proud to be part of this team spearheading a support system for these parents here in Houston, and my hope is that similar programs will begin to pop up around the country,” Schaaf said.
For more information and to sign up for the next “From Stress to Strength” program, contact Susan at Ext. 2-4182.