United Spinal Association’s newest support group aims to be a virtual safe haven for parents and guardians who are caregivers of children, adolescents, or young adults with SCI/D or other mobility or developmental disorders.
“Although parents of children with SCI/D have always been valued members of United Spinal, we recognized that there wasn’t a set space for them to come together,” says Elena Martino, an occupational therapy doctoral student who started the group as part of her Capstone project.
“The group so far has included parents of children ranging from 7-30 years old and has been a wonderful opportunity for parents from all around the country to share their experiences and provide advice on challenges.”
Once Elena’s internship with United Spinal ended one of the group’s participants, Becky Sterner, volunteered to take the lead. Her son Andrew acquired a T8 spinal cord injury in 2021 when he fell 30 feet off a roof. They learned about United Spinal Association through our Virginia chapter leader, Richard Bagby, who visited Andrew when he was in rehab at Sheltering Arms.
After learning about the Empowering Parental Caregivers group and finding value in the meetings, Becky decided to keep it running.
“I volunteered because it’s a passion for me. I want to help other parents, I want to have a community of people who are going through similar situations that only we can understand,” she says.
“It’s a safe space to talk about what’s on your mind. We’ve had some conversations about skin breakdown and how we can prevent that which has been helpful to me.”
Becky has always been a believer in therapy and has encouraged Andrew to do the same. While the Empowering Parental Caregivers group isn’t therapy per se, it can have some of the same benefits. “Andrew heard me talking with the group and saw how it was helping me. And one day the switch flipped and he said, ‘you know, I think I should talk to somebody.’ It doesn’t solve everything, but it certainly has helped him.”
Jane Brady, another mother in the group, shares many of the same sentiments as Becky does.
She is the primary caregiver for her 31-year-old son, Pete, who sustained a C3-4 spinal cord injury in 2012. They found out about United Spinal through our Western New York chapter leader Natalie Barnhard who founded the Motion Project, where Pete is now a board member.
At first, Jane didn’t know if she would be a good candidate for the group given the fact that her son was injured over ten years ago, but Elena assured her that the group is for everyone regardless of where they are in their journey.
“I wondered if I would be a good participant because this journey has different phases. For somebody like me who is ten years out versus somebody who’s brand new, it’s a whole other world. It was just helpful for me to share my struggle with being 66 years old and a single parent at this point, and trying to help my son the best I can,” says Jane. “Whenever you’re in a group with people who all share similar struggles, it’s so supportive.”
The group has been one way that Jane has prioritized herself and her well-being this year, which tends to be difficult as a parent.
“I think the best advice I have to other full-time caregivers is to strike a balance between that role and to take out time for yourself. If you don’t you can slip into being overwhelmed quite quickly and then it’s harder to get back to equilibrium.”
Meetings consist of guided discussions on parent-chosen topics which include navigating through tough transitions, home exercise programs, skin integrity education, adaptive recreation, assistive technology, adaptive dressing and more. The group meets on the second and fourth Tuesday of the month at 7:00 pm ET. For more information, contact Lindsey Elliott at lelliott@unitedspinal.org.
Contact our Community Support team for more information about all of United Spinal’s chapters and programs. Join us by signing up for a free membership. To support our mission, donate here.
