Sarah Gilbreath
By Forrest Preece
“What does this mean for his schooling? Will he have friends? How about his adulthood? Will he be able to say our names?” When West Austinite Sarah Gilbreath and her husband Jake received the autism diagnosis for their three-year-old son Parker eight years ago, they asked these questions and a lot more.
On a recent afternoon, I sat down to talk with Sarah in the offices of Walters Gilbreath, PLLC, where she serves as chief executive officer, and heard about their journey. When you meet her, you quickly understand that this is a woman who looks at a turn of events, decides how to deal with it, and proceeds -- full steam ahead.
She says that it was quite a process just to get the diagnosis. Around the time Parker was 18 months, they started him in speech therapy and physical therapy to help his development. When he was three, their medical team finally told them that he was indeed on the autism spectrum. As Sarah points out, saying “autism is rising” is a misstatement. That upswing in numbers can be attributed to the broadening of the parameters and diagnostic characteristics, including what used to be a separate diagnosis like Asperger’s.
Their first concerns were obvious: how to find the school that was right for him, and how to seek and plan the therapies and interventions that were needed. As it happened, some of their friends were involved in a non-profit group called Imagine A Way, which is dedicated to providing funds to help parents with neurodivergent children. Serendipitously, before Sarah met Jake, she had attended one of the organization’s fundraisers. Afterwards, she stayed tangentially involved.
After she married Jake, who had Parker from his first marriage, they received their son’s autism diagnosis. They had been anticipating this outcome, and now they could begin creating a course of treatment.
Not long after that, Jake had lunch with a friend of his who was on the Imagine A Way board. They decided to support the organization in a larger manner and explore ways to cope with their situation.
Suddenly, they realized that dealing with this situation was going to be more expensive than they realized, not just in monetary terms, but the many hours needed to transport him to therapy and to wait while it was happening. As Sarah says, it was a burden for them, and they have better-than-average resources. “For a family without substantial means and the flexibility to juggle work hours, this set of circumstances would be a calamity.”
Just months before they received the diagnosis for Parker, Sarah and Jake had their annual end-of-year planning meeting to set goals. Soon after that, she decided to apply to The Junior League of Austin, hoping to learn more about how to navigate the non-profit world with fundraising and organizing.
Not long after they had the official finding about their son’s issues, Sarah received a call from a friend who was part of the leadership at IAW. He asked her to join their board. Wondering if “he had called the wrong number,” she hesitated, but said yes. Sarah decided that she would be a silent partner at first, but true to her nature, she started speaking up in meetings. Soon, she was chairing a subcommittee and was then asked to be on the executive committee.
Two of IAW’s goals were to clear the wait list of children who needed help and to expand their activities to Houston. With a lot of hard work, both of those tasks were handled.
Now, Sarah is the president of the board, and while she’s a volunteer, it often feels like a part-time job in terms of the hours and work that it requires. On the day we met, she had done two hours of verification and interviews for families who were applying. Then she ran the executive board meeting. “This is what I enjoy most outside of being a mom and a wife and spending time with my family.”
Taking a deeper dive into what IAW does, Sarah says that they strive to fill the gap for families that are above the Medicaid level but don’t make enough money to adequately fund the therapy their child requires. Developmental therapy can run between $30,000 to $60,000 or more annually, and in many two-earner households, one person must quit working to transport the child to therapy sessions. In some cases, families have had to sell their homes to raise the money needed to continue with the programs.
Sarah says that Joel and Carolyn Price, who founded the group in 2012, made it their mission to fund a child’s therapy through the age of seven. They never wanted to help a child without adequate follow through. Since their inception they have helped 191 children and are on track to serve just under 120 children this year. And yes, they have openings.
When I asked Sarah for advice parents faced with this issue could use, she was forthcoming. First, they should remember that they are the experts on their child. Some doctors will tell you to “wait and see,” and that can play out for too long. “If it feels like you need attention immediately, get another opinion,” Sarah says. She has seen it happen with too many families -- when they finally start therapy, they say, “What if we had done this two years ago—we would be that much further along.” On a positive note, she says that a lot of pediatricians are now doing developmental screenings during routine well checks and starting a dialogue sooner than in years past. “It’s important to start a conversation, and there should be no guilt about it.”
Next, get the diagnosis in writing. Until they have this piece of the puzzle, parents will not be able to obtain the therapy that is needed, and insurance will not cover it. Hearing the diagnosis may cause the parents to be unnerved, but it will unlock the tools and interventions required to put things on a path to bettering the situation. After the diagnosis, all the parties need to agree on the therapies. Applied behavioral analysis therapy is the gold standard, but there are also approaches like speech, occupational, and physical therapy, as well as more niche treatments like music and equine therapy, which should be customized to the child’s place on the spectrum and progress therapeutically.
Sarah says that the parents need to remain flexible in their thinking. If adjustments need to be made as time goes on, that is advisable. It is easy to say that “this is the plan,” but keeping an open mind is important. Last, parents should ask for help and look for resources and community. It is perfectly permissible to admit that one’s family is trying to navigate an unknown world. They might not be able to dine out any longer or visit the neighborhood park to play, because the child sees the world through a different lens and can be triggered in unusual ways. It may seem isolating because parents don’t know others with neurodivergent children. Sarah says that it is OK to ask for help, even if it’s calling a neighbor to come over and do a puzzle with the child so you can shower or have a moment to reset. Maybe a parent will find a kindred soul sitting in a waiting room, and they can compare notes about how they are coping. Connections and community are important.
Sarah says that anyone needing financial support with their child’s treatment should call Imagine A Way. They try to help everyone who applies. “Maybe we’re not a good fit for whatever reason. Maybe a family doesn’t live near an applied behavioral clinic. But perhaps we can connect you with someone who can provide support in a different way. Our goal is to help as many kids as we can.”
