In the first weeks after their son Ben began kindergarten, Karen O’Brien and Gary Romano felt like they were living through a “crash.” The stress of seeing Ben struggle in his new school environment — and a sinking sense that it wouldn’t be temporary — brought their long-simmering worries to a boiling point.
“Like a lot of families with a young child who has autism, the first few months of school were extremely tough,” Karen remembers. “But we were lucky. Ben’s school was proactive and helped us get to a diagnosis for him sooner.”
“And when we did hit roadblocks over time,” Gary says, “We had the privilege and means to fight for him and secure the help he needed.”
Ten years later, today feels much brighter for Ben. He is thriving as a freshman in high school, with a voracious love of reading and a zeal for cross-country running. In addition to his hard work over the last decade, for Ben, the game-changers have been his parents’ love, patience and tireless advocacy, strong support at school and the wraparound, expert care he has received at the Lurie Center for Autism.
“What we want for our son, we want for everyone’s sons and daughters. We need places like the Lurie Center that, in addition to excellent care and research, are also focused on capacity building and systemic change to meet the needs of the community.”
Karen and Gary are delighted and grateful for Ben’s success. Still, they can’t help thinking of how different things could have been for him — and are for so many children with autism. Out of care for families in the autism community struggling with access to information and inclusive learning, they have made significant contributions in recent years to strengthen the Lurie Center’s educational support services.
Overcoming Barriers to Learning
Gretchen Timmel, MEd, an educational specialist in the Lurie Center, offers professional consultation to families navigating challenges their children face in traditional school settings. Because of Karen and Gary’s generosity, Timmel has been able to work with several families to help them understand their children’s rights and the resources available to them, up to and including enrolling at out-of-district schools with more robust therapeutic special education programs.
Though ensuring children’s safety and ability to learn at school is fundamental to their well-being, Timmel explains these educational support and advocacy services are often limited because they are not covered by insurance.
“That is why this gift from the O’Brien-Romano family has such a meaningful impact,” Timmel says. “The families we work with are extremely vulnerable, and parents often feel helpless and misunderstood in their interactions with their children’s schools. It is hugely generous of Karen and Gary to provide funding that allows us to take on these cases and intervene on families’ behalf.”
The O’Brien-Romano family’s gift has also made it possible for the Lurie Center to hold free workshops for parents and caregivers, with many sessions including Spanish language interpreter services. Susan Kessler, LICSW, MSW, explains that it can be hard for parents with limited English proficiency to find accurate information and guidance about parenting autistic children — a barrier the Lurie Center is working to solve.
“I very much appreciate being able to offer these workshops to families of limited means and those who need interpretation,” Kessler says. “One mom who attended a workshop told me through an interpreter that she was excited to learn from our behavioral specialist with other parents with similar concerns, and that it was very helpful to her.”
Championing Change for All Children
Karen and Gary hoped stories likes these would come from their decision to support the Lurie Center.
“To have an impact that is touching people’s lives is such a gift to us,” Karen says. “Looking back, there is a part of us that wishes we didn’t wait — that we had made smaller gifts sooner, knowing the difference it could have made to families.”
“What we want for our son, we want for everyone’s sons and daughters,” Gary adds. “Autism awareness in education has come a long way, but the system is still very broken. We need places like the Lurie Center that, in addition to excellent care and research, are also focused on capacity building and systemic change to meet the needs of the community.”
To make a gift to the Lurie Center for Autism, please click here or contact Craig Schroeder at cschroeder3@bwh.harvard.edu for more information.
