A Mother’s Journey

By: Dr. Megan Schwalm
Executive Director, Tennessee Respite Coalition

In the summer of 2014, I was a single mom with two kids under three. The oldest had recently been diagnosed with autism, though I knew that diagnosis was coming for at least a year. I was also in the midst of finishing a PhD. That summer was one of the hardest of my life. It was marked with meltdowns that lasted for hours on end. There are few things I remember from that summer other than the blur of screaming, spinning, hair-pulling, punching, and kicking. Oh, the screaming. It seemed to go on forever. It was the kind of screaming that you feel deep in your core. The kind of screaming that shoots through you and makes you ache inside.

The meltdowns lead to the breakdown of relationships because friends couldn’t understand and couldn’t handle being around the screaming and violence. My best friend told me we couldn’t be friends anymore because she just couldn’t handle being around my child anymore. Sidenote, friendship breakups are more painful than any romantic breakup I have ever experienced.

I was confident I was failing my child because, no matter what I did, I couldn’t bring him peace. We went to therapist after therapist, clinic after clinic, with no relief. I cried myself to sleep almost every night that summer out of exhaustion, out of desperation, and out of feelings of failure. Every night I questioned whether I could go on one more day.

Luckily, I lived in a state with a robust Medicaid Waiver system. While the wait to get a waiver was long, once we got it, it was as if I could finally breathe. The waiver provided me with enough respite hours each month so that I could take a break every Sunday from my caregiving duties. It is not an exaggeration to say that this respite time saved me and my family. Respite gave me time to focus on myself, to breathe, and to come back to my caregiving duties refreshed and ready to take on another day.

Four years later, I moved to Tennessee. It was immediately clear that the Medicaid Waiver system here was nowhere near as accessible or robust as what we had experienced back home. Without the supports we had back home, I felt like I was drowning. I asked every practitioner we encountered where caregivers get respite here in Tennessee without any real answers. It wasn’t until I talked with another special needs mom after being here nine months that she told me about the Tennessee Respite Coalition. The Tennessee Respite Coalition provided the respite support that I desperately needed, which enabled me to be a more present and engaged caregiver.

Shortly after I signed up for services with the Tennessee Respite Coalition, I applied for the job of Executive Director of the agency. I had directed other nonprofits in the past, but I walked into this job with a personal mission—I wanted to ensure that no other caregiver in this state would spend nine months trying to find respite services like I had. I want to make sure that every caregiver in Tennessee who needs respite services knows who we are. I want to make sure that every caregiver who feels like they are drowning can access respite services so that they can get the break they need and deserve.

If you need respite services, please reach out to our Respite Helpline at 615-269-8687 or check out our website at http://www.tnrespite.org. If you want our Outreach Coordinator to come speak with your agency or group about the services we offer, please reach out to Breion Dixon at outreach@tnrespite.org.