“Society is only as healthy as its caregivers.” 

–Jess Ronne, parent caregiver featured in Unseen: How We’re Failing Caregivers & Why It Matters!

 

Here at the JJMF we strive—every day—to support caregivers’ health, knowing it makes a difference. A difference in the lives of those very caregivers’ children who have complex neurological conditions—as well as the community at large. Some of our programs that support parents and caregivers’ health include: mental health services, respite care, as well as free family and parent and caregiver connection events. 

 

Karlita Blackwell is JJMF’s Community Engagement Manager and mom to 7-year-old Ezra who is affected by a rare neurological condition. She understands firsthand the importance of supporting “parent caregivers” who face daily challenges due to the high level of stress experienced when caring for a child with medical complexities. Drawing a comparison between the roles of parents in general and parent caregivers, Karlita shares, “As parents, we put 100% into our children and their care, but as parent caregivers, that level of intensity increases.”  

 

Both personally and professionally, Karlita enjoys connecting with other disability parents. When talking with other parent caregivers, Karlita often finds a common denominator: “feelings of overwhelm, isolation, and lack of support—whether it’s from family and friends or our child’s medical team.”

 

Upon viewing the documentary Unseen: How We’re Failing Caregivers & Why It Matters, Karlita immediately felt like her feelings were validated. When she stepped into her role as JJMF’s Community Engagement Manager, Karlita felt compelled to bring this important film to our community. And what better way for the JJMF to shed light on—and help address some of those feelings our families face—than by hosting a private screening for our community of parent caregivers, medical and mental healthcare professionals, and supporters who are committed to helping make families’ lives easier . 

 

The film is a raw, unfiltered glimpse into the lives of parents caring for children and adults with disabilities or complex medical needs and opens the discussion about what supports are needed. 

 

“Hosting this documentary is one of the ways we hope to help move the needle,” said Genny Jessee, JJMF’s Executive Director and Co-founder. “I truly believe once others in our community understand what it is like to care for children like June, they will want to support families carrying the load.”

 

On July 30th, more than 100 people gathered to see this important film. Following the shared screening, we conducted a short panel discussion highlighting the perspectives of various people closely involved in caring for children with medically complex conditions: parent caregivers, healthcare professionals, and advocates. We reflected on the issues highlighted in the film and shared ideas about how to continue to build awareness and support for our community of caregivers and their families.

 

Several panelists’ reflections following the film included thoughts about the highly relatable message.

 

“It’s an anxiety that you feel will never go away, and there’s no way to really separate yourself from it. A lot of people ask, “What can we do to help? How can we help?” What we’re missing is having the educated people who do know and understand [the challenges] provide the help without having to ask. If that was there and readily available, it would just be such a lift from our stress and anxiety, knowing that we can get breaks.” -Richard Sexauer, JJMF Community Parent

 

“As a neurologist, just about everything that was mentioned in the documentary resonated with me. I don’t know that I learned anything new just because I’ve done this long enough, I’ve seen this long enough, that I don’t know that I gained any insight. But, I will say for every story that came up, I could think of a parent that was going through that.” -Dr. Liu Lin Thio

 

I’m a mental health therapist, and it felt like a lot of my sessions. People are generally very forthcoming and vulnerable in therapy – when it’s a confidential one-on-one space – and so especially during times of COVID and also just the nature of working with caregiving parents, it’s always on the phone, they’re often in the bathroom, they’ve got like 10 minutes to themselves, and they’re just trying to get their point across; and I just really appreciate the vulnerability of [the film].  – Katherine Aravamudan, Licensed Professional Counselor

 

As we look to the future, the JJMF is excited to continue offering new resources and ways to support our community of parent caregivers. Starting in August, we will begin offering a monthly Virtual Support Group led by JJMF Community Engagement Manager Karlita Blackwell, M.A. Community Counseling. Our goal is to create a comfortable space for parents and caregivers to connect with one another, share resources, and take a much-needed break. 

The first meeting will take place on August 27 and will be focused around a discussion of the documentary Unseen. Please feel free to sign up and/or share this opportunity with parents and caregivers of medically complex children.

We are incredibly grateful for everyone’s attendance at the screening of Unseen and look forward to continuing to raise awareness and support for our amazing community of caregivers.

 

By Kelsie Guerriero, JJMF Director of Communications and Strategic Partnerships