Santa Rosa mom of child with disability creates inclusive space for many

When a doctor told Larkin O’Leary her son had Down syndrome, her life changed forever.

Following James’ birth, on Saint Patrick’s Day in 2014, O’Leary faced a profound isolation, something she wasn’t expecting or could ever prepare for. Her friends, family and former co-workers couldn’t understand. And, as hospital visits for her son started to stack up, she even gave up her beloved job of 14 years as a middle school teacher to care for him.

“Whenever James’ birthday rolls around, I think about how that day was the best but also the worst day of my life,” O’Leary said of her son’s birth. “It was like being alone on an island and watching the entire world continue without me.”

O’Leary’s new life meant grieving the one she had imagined for herself and James.

“It was never about being sad about his disability. It’s about the several hospital visits, the long hours in the waiting room, waiting for doctor’s calls and missing events,” O’Leary said. “I call these moments of grieving.”

She craved a supportive space where she could cry and vent about the challenges a parent of a child with a disability faces, from ongoing trips to the hospital to difficulties connecting with other parents.

For this reason, O’Leary started her Santa Rosa-based nonprofit Common Ground Society, an organization that offers support and resources to families with kids who have disabilities, through support groups and a Sonoma County Facebook group.

Through Common Ground Society, parents or siblings meet at a park or business in Sonoma County to vent or just talk. Moms meet up for yoga. Parents schedule play dates with their kids.

Common Ground also educates the community about disabilities, inclusion and fostering compassion. Since 2017, O’Leary has facilitated presentations for over 50 schools for students.

For her compassion and dedication to educating the community about disabilities, O’Leary has been selected to receive the North Bay Spirit Award for November. A joint project of The Press Democrat and Comcast, the award highlights volunteers who demonstrate exceptional initiative for a cause, often identifying a need in the community and finding an enterprising way to fill it.

For several parents of children with disabilities, the organization has served as a place of safety and belonging.

“I’m in awe of the community she has created. It became bigger than what she realized it would become,” said Emily Peterson, a mom of a 3-year-old daughter with Cornelia de Lange syndrome, a rare genetic disorder that causes malformations of the hands, feet, arms and legs. “It’s amazing that I can connect with people that understand how I’m feeling and understand my challenges. We love our children, yes, but we also have our sadness and grief.”

"Powerful experience“

On a Tuesday afternoon at her Santa Rosa home, O’Leary held her phone, which was buzzing with calls.

That wasn’t surprising. The Santa Rosa native runs the 500-plus-member organization of mostly parents but also siblings, caregivers, teachers and Spanish speakers. She has help from a group of more than 25 volunteers.

O’Leary started Common Ground Society in 2017 with Jessica Hunter, mom of 8-year-old Annalise, who has Down syndrome. They called themselves “Just Two Moms” and started with casual meet-ups with other moms looking for emotional support and to share resources.

That same year, on World Down syndrome Day, O’Leary and Hunter presented at their kids’ school, Lattice Educational Achievement Preschool, about their children’s disabilities.

The presentations continued, opening the door for discussion about disability for students and teachers. In 2018, during a presentation at Binkley Elementary School, a third grader raised his hand and shared how his rare genetic disorder requires him to be in a wheelchair, which he didn’t feel comfortable bringing to school.

Feeling seen and supported, he then brought his wheelchair for an entire school year after that day, O’Leary said.

Seeing the impact of fostering a “safe space” for people has stuck with O’Leary and fuels her mission.

“His mom told us that was the only time he ever felt normal in school,” O’Leary said, with tears in her eyes. “Those moments are why I volunteered all these years.”

The presentations have become essential for Sonoma County schools striving to foster awareness of various disabilities among their students.

“Those presentations opened up the students to a new perspective,” said Hilary Kjaer, Rincon Valley Union School District’s director of teaching and learning. She was at Binkley Elementary for that presentation in 2018 and saw its effect.

“Seeing the impact it had on that student was incredible to see. It’s a powerful experience.”

Highlighting compassion and empathy

When O’Leary was in fifth grade, she bullied a girl at her school for wearing the same white Tweety Bird shirt every day. Now an adult, O’Leary realizes the girl wore that shirt every day because she couldn’t afford more.

“That moment stuck with me. I think about that girl often. You just never know what someone is going through,” O’Leary said. “When it's somebody or something we don't know, we feel this weird sense of fear. So we bully or ignore completely. But why not say hi and get to know someone?”

It’s one of the reasons why, during presentations, O’Leary highlights the importance of compassion — placing yourself in another’s shoes.

For the first handful of years following James’ birth, she was often at the hospital with him. James was throwing up constantly, losing weight and dealing with gastrointestinal issues. He had to be put on a nasogastric tube, which carries food and medicine through the nose, to maintain his weight.

“I like being able to talk about it, you know, being in a safe space and being like, ‘I hate being a mom today,’ and that I’m broken down and exhausted,” O’Leary said on navigating her day-to-day emotions.

Her first love: Teaching

O’Leary said that before meeting her husband, Peter, her first love was teaching.

Her relationship with her fourth-grade teacher, Nancy Fischer, inspired her to become a teacher herself.

O’Leary was the rebellious type. She struggled in school and needed extra guidance from teachers.

She’d sit with her teacher Mrs. Fischer nearly every day at lunch. She’d talk about what she did over the weekend, her plans and hobbies. One time, Fischer had misplaced her retainer and found it stuck to her pants, O’Leary described with a laugh.

“She showed her flaws and her humanness,” O’Leary said. “All those lunch breaks with her made a difference for a kid that felt out of place. I wanted to do what she did for me. So, I became a teacher.”

In 2003, after graduating at California State University, Chico she started off as a student teacher at Bellevue Elementary School and eventually became a teacher at Rincon Valley Union School District, where she taught elementary and middle school students.

In 2017, she put her leave in as a middle school teacher at Rincon Valley Middle School.

“It was one of the hardest things I’ve ever had to do,” O’Leary said. “I miss teaching every day of my life.”

Introduced dad’s group

Moving forward, O’Leary plans to solidify bonds between Common Ground Society’s existing families by checking in with them through social media, email or text message.

She also plans to diversify the organization’s members by reaching out to Spanish-speaking families who have children with disabilities.

O’Leary said she is also hunting for a permanent spot in Santa Rosa to host the support groups — family meet-ups, a recently added dads’ group, the moms’ group and sibling and new family support groups.

Common Ground Society introduced the dads’ group in May. O’Leary believed this was important given that dads aren’t always forthright about sharing their emotions and the challenges they face as parents of children with disabilities, she said.

“I’m so honored and grateful for the way our community has stepped up and showed up right from the beginning. And it’s never stopped,” O’Leary said. “Whatever a person needs, we’ll be there.”

You can reach Staff Writer Mya Constantino at mya.constantino@pressdemocrat.com. @searchingformya on Twitter.