Approximately five years ago, my husband Ryan and I began experiencing a mental health crisis. We lived in rural Tennessee with our 8 children, including our son Lucas who has special needs and profound autism. Lucas’s needs never felt like a big deal when he was young. Yes, there were medical concerns we had to be aware of, and yes, he required extra supports and therapies, and yes, he didn’t sleep great, but all in all, he was a sweet boy who we felt honored to raise until…until he began going through puberty and that sweetness was replaced with extreme aggression, screaming, and anxiety, and we had no where to turn.
We lived in a community that was very rural, so rural that there weren’t any special needs ministries at the churches within a 30 mile radius. No accessible playground in town. No respite opportunities. No extended school year offered. And as our world became smaller and smaller, and as we dug in our heels and dealt with life, and as the isolation became suffocating, our bodies began to respond to the stress with panic attacks, weight loss, and insomnia that resulted in numerous ER visits—and the eventual realization that we had to do something. We could no longer live like this. We had to move toward resources, which we did in 2018.
These experiences in rural America, however, were not in vain. They led to the formation of a non-profit, The Lucas Project, which provides recognition, resources and respite for special needs families. They led to a book I have releasing this summer called Blended with Grit and Grace, stories about our life on the homestead. And they led to a really strange idea: an idea that perhaps a documentary was needed to dive deeply into the unspoken mental health crisis that many caregivers silently suffer through.
The stats don’t lie. There are approximately 16.8 million caregivers caring for a child with special needs. Thirty percent of caregivers say that caregiving has worsened their health, and 43% report feelings of high stress. Unfortunately, these feelings often have disastrous results, if not addressed, including the all too-common scenario that plays out on news stations, when a caregiver reaches the end of their rope and takes matters into their own hands, by either harming themselves or their child.
The idea for a documentary was slowly etched out on paper and then forgotten for awhile, until I met an aspiring filmmaker and his wife Amanda; then it really began to take shape. They shared my vision and wanted to partner together to create something special. And lo and behold, the Unseen Documentary was born.
It’s been years of planning, and we are now close to making this project a reality: a project which will bring desperately needed awareness to the mental health struggles of caregivers; a project that will eventually lead to more resources and supports for families like mine; a project that will shed a light on the difficulties of caring for a child with profound special needs.
I believe that stories change the world, and the stories of these caregivers must be brought to the surface. They must be shared in order for true change to occur.
Please watch our trailer and then if you feel led to do so, help us make this project a reality. Thank you.
Jess Ronne is an author, speaker, and caregiver advocate. She is founder and executive director of The Lucas Project—a non-profit dedicated to providing respite opportunities for special needs families. She and her husband Ryan live in Tennessee with their 8 children, including their son Lucas who has profound special needs. Her story of beauty from ashes has been shared on The Today Show, Daily Mail and Huffington Post and is detailed in her memoir Sunlight Burning at Midnight. To follow the ongoing saga she can be found at www.jessplusthemess.com or Facebook/Jessplusthemess or Instagram/Jessplusthemess.
