Meet Jessica Ronne

Jessica Ronne’s story began in 2004. During an ultrasound appointment, she learned that her son Lucas had experienced a stroke in utero. From that moment, she became a lifelong caregiver. A few months later, Lucas was born with profound disabilities, including a diagnosis of autism, and significant delays in every area of life. Doctors even told her he might not survive birth, but Jessica refused to let this prediction deter her from her goal of becoming a mother.

Life’s challenges didn’t stop there. Years later, Jessica’s first husband, Lucas’s father, was diagnosed with a brain tumor. At the time, she was a mother of four and a caregiver for her husband, who passed away in 2010. A few months after his passing, Jessica began blogging about her journey. Through her blog, a stranger from Pennsylvania reached out, mentioning a widower in Oklahoma who had also lost his wife to brain cancer. The stranger suggested they might find encouragement in each other’s experiences. Jessica connected with Ryan, and within a year, they were married.

Jessica and Ryan adopted each other's children and moved from Michigan to rural Tennessee to build a life together. That’s when their journey with Lucas took an unexpected turn. Lucas began exhibiting more challenging behaviors, and they found themselves desperate for answers in an area with few, if any, resources. This struggle inspired Jessica to establish The Lucas Project, a nonprofit organization created in her son’s honor.

We had the privilege of sitting down with Jessica to learn more about her journey and discuss the challenges caregivers face. Check out this insightful Q&A:

Tell us more about the Lucas Project. 

We provide recognition, resources, and respite for parents and caregivers of children and adults with special needs. As part of our recognition efforts, we produce documentaries. Our award-winning documentary, Unseen, is headed to ABC. We’re also thrilled to be working on a new documentary called Uncertain, which will explore how the housing crisis impacts caregivers and their families. These families often face significant challenges as their children grow up, with a lack of group homes or safe residential options. Through this documentary, we aim to uncover why more options aren't available for families like ours.

In addition, I host a podcast called Coffee with Caregivers, where I engage in open and honest conversations with caregivers about their experiences. I speak nationwide about the caregiver crisis, write articles, and maintain a free database with over 300 resources for parent caregivers. We also have a thriving support group with nearly 2,000 members.

What things regarding caregivers should be discussed more in our community?

I don't think people like to talk about profound autism, and that was true for us as well. Society often avoids the messy parts (the behavioral issues, the aggression) because people simply don’t know how to handle it. We tend to gravitate toward short-term problems where we can step in, help, and move on. For example, when my husband was battling brain cancer, I received so much help. It was a short-term situation: people brought meals, helped with my kids, and supported us through that season.

But with Lucas, his profound autism has been a 20-year journey, marked by aggression and challenging behaviors. He’s still in briefs, and the ongoing nature of these difficulties feels overwhelming to many. As a result, people often ignore families like mine. My goal has always been to shed light on these isolated families—the ones holed up in their homes because the world isn’t designed for them.

It’s incredibly difficult to take children like Lucas out in public. The screaming, the behavioral issues, or even the aggression can make outings almost impossible. For us, one of Lucas’s quirks is that he licks people he encounters. That’s a tough behavior to manage now that he’s a 20-year-old man. I don’t have the physical power to stop him, and the reactions we get from others can be harsh. It’s often easier for us to stay home rather than face the judgment and discomfort of those around us.

What does being a community supporter mean to you?

My goal has always been to illuminate the lives of these forgotten and isolated families, bringing their existence to society's attention. First and foremost, we need to acknowledge that they are here. Ignorance may be bliss for some, but it’s far from bliss for these families. By sharing their stories, I aim to dispel the excuse of, “We had no idea” or “We didn’t know.”

The question then becomes: What will we do about it? The answer lies in creating respite opportunities and providing consistent breaks for these families to support their mental health. Statistically, 42% of families in these situations struggle with depression and other mental health challenges, though I suspect the true number is even higher. Once we recognize these families and their struggles, we can take meaningful steps to help them.

Ultimately, my goal has always been to bring recognition and awareness to the forefront. There are so many good people who want to help but can’t act unless they’re aware of the problem. We’re incredibly grateful to Autism Speaks for giving us the opportunity to share our work and shed light on these critical issues.

What is one message that you would like to share with the community? 

I know many of us are in desperate need of respite or a group home for our children, and finding that support can make all the difference. Earlier this year, we created a group home for Lucas, and he moved in this past February. Now, about nine months removed from having full-time caregiving duties in our home, I truly believe anything is possible.

You can’t give up hope. No matter how overwhelming the challenges may seem, you have to keep pressing forward and searching for solutions. Support is out there, and when you find it, it can change everything.

Learn more about the Lucas Project here.