Support Groups for Families with Disabilities
Family Life: You run the Common Ground Society, a nonprofit that offers support groups for families coping with disabilities and any sort of diagnosis. Tell us how it got started. Was it from personal experience?
Larkin O’Leary: When my son was born in 2014, the doctors surrounded my husband and me and told us, “We’re sorry to tell you your son looks like he has Down syndrome. The first indicator is the large hole in his heart. He’ll need to have open-heart surgery. We aren’t sure how soon. We’re taking him to San Francisco right away.”
FL: You must have been devastated.
LO: I was a first-time mom. It was a huge shock. Fast-forward three months: James had open-heart surgery and then a week later he had intestinal surgery. He ended up having surgery on his esophagus; we landed in the hospital for 40 days and came home with a G-tube. We were in the hospital a lot—every winter for the first six years.
FL: Were you able to find support?
LO: We have a nice Down syndrome community here…but I didn’t really fit in with them. I was going through all this medical stuff. I found my people at the hospital, those [who had] rare diagnoses. So in 2018 I created a Facebook group [with] just the 30 people I had met [at the hospital] and also some of my friends whose kids had recently been diagnosed with autism.
FL: How did what you were going through affect your work life?
LO: I was a teacher in the Rincon Valley School District for 15 years. Teaching is my passion; I call it my first love. I had to take leave and resign. It was just so hard. My district was amazing; they worked with me to keep me there. But my son had 50-day stretches in the hospital. There was just no way.
FL: What happened with your work with families with disabilities after that?
LO: In 2018, at the same time as I started the Facebook group, my son’s preschool reached out and said, “Hey, for World Down Syndrome Day would you guys do a presentation in our class about Down syndrome?” And I was like, “You want me to come teach?!” So my friend Jessica and I did a presentation, and I invited the paper. They came and did this big story. All of my teacher friends saw it and said, “Will you come to my class?”
FL: You were able to teach again!
LO: Yes! But the demand was overwhelming so we started doing whole-school assemblies. Different districts started to hear about us. Professors at Sonoma State University [SSU] heard about us.
FL: It sounds like interest just kept growing.
LO: Yes. In 2020 we incorporated and became a 501c3. Our presentations now include different diagnoses. Our first one is about more visible disabilities: Down syndrome, limb differences, blindness, deafness and hard-of-hearing. And then we do invisible disabilities: ADHD, Tourette’s syndrome, stutters, autism. Our Facebook group has almost 500 members. We welcome anybody who has a child with a medical issue or any sort of diagnosis. And we also do Meetups to help support family members.
FL: Tell us more about the Meetup groups.
LO: We usually meet at a park—all the meetings have been outside since we came back from doing Zoom groups. The dads meet once a month; they usually go hiking and then have lunch. There are mom groups. We did a sibling group, but it was right when the cases started rising so we put it on pause and are just now getting back into it. I’m looking for someone to do the group that’s for ages 2–6. There is a group for ages 7-plus, which is run by a school counselor I worked with at Rincon Valley. We have the New Family Meetup [for families who have received a new diagnosis], run by a licensed Petaluma therapist whose son has a one-of-a-kind diagnosis. That one is on Zoom. And then there are our Family Meetups. We usually have them in a fenced-in park and offer snacks. We work with SSU to get student volunteers to help. Some of those students I actually taught when they were in elementary school!
FL: Do you attend all the groups?
LO: I try to. We have volunteers who are running them now. Fifty people volunteer in various ways. I have someone who is helping me manage them. But with our lives—pop-up medical conditions and therapies—life is hard; it is hard to count on people. We are always looking for volunteers.
FL: What’s your vision for the future?
LO: My endgame is to make Sonoma County the most inclusive place in California so no one ever feels alone again.
For more information about the Common Ground Society, go to commongroundsociety.org.