Help us Grow Elmgrove- Leo's Journey

Our son, Leo, was diagnosed with autism when he was two years old.  Since then, our journey has been filled with extraordinary love, meaningful progress, difficult days, and constant worry about his future.  I do not think we will ever stop searching for ways to help our son live the fullest and happiest life possible.

Recently, I saw a mother share a video of her autistic son sleeping. She wrote:  “I wonder if, in his dreams, my autistic son plays with friends, talks freely, tells everyone about his day, and is able to do anything his little heart desires.” Those words stayed with me because they reflect the reality of so many parents of autistic children—including me.

We are always thinking ahead, anticipating challenges, trying to keep our children safe, and helping them navigate a world that was not designed with them in mind. The love is immeasurable, but so is the responsibility. Many families live in a constant state of high alert while quietly carrying fears about what the future may hold.

When Leo was first diagnosed, we were told to apply for a Medicaid waiver and explore ABA therapy. We immediately began the waiver process.  Three years later, he is still waiting—and will most likely continue waiting for several more years.

When I contacted a provider, I learned there was a six-month waiting list and that our insurance would not cover the therapy.  The cost would have been approximately $2,800 per week out of pocket.  Specialists and therapists had waiting lists of six to ten months. We are currently on another waiting list that has lasted more than a year.

We are repeatedly told that early intervention is critical, yet families encounter roadblocks at nearly every turn. Help may exist, but too often it is unaffordable, unavailable, or years away.  My heart aches for parents starting their journey and coming to know this reality.

Two years ago, I was fortunate to attend a Saturday playgroup for children—most of whom are neurodivergent—and their siblings, parents, and therapists. The playgroup at Trailhouse gave our children a place where they could simply be themselves.  Just as importantly, it gave families a place to connect, share challenges, exchange ideas, find solutions, and support one another through difficult moments.

I found a lifeline.

But I could not stop thinking about the mothers and families who had not.

Are they awake at night searching for answers?  Do they feel isolated, hopeless, or helpless?  Do they know that other families understand what they are going through?

I see and hear that desperation far too often.  Because I was fortunate enough to find support, I feel an obligation to turn around and help the next family in line—to make their journey a little less difficult and a little less lonely than ours has sometimes been.

I still worry about what Leo’s future will look like, but I also know how fortunate we are to have the community surrounding us.  Every parent and caregiver deserves that same sense of connection and belonging.

That is why we are building Elmgrove Foundation.

We are creating a physical space where neurodivergent individuals and their families can connect, learn, play, regulate, and simply exist without judgment.  It will be a place where parents and caregivers—people who give everything they have to create better futures for those they love—can find understanding, practical support, and hope.

We intend to build more than a place.  We intend to lay a foundation that others can follow—a model for what becomes possible when a community chooses to embrace and support neurodivergent people and their families.

Please consider helping us bring this community to life. We would be honored to have you join us.

With love and gratitude,

Caroline, Rob, and Leo