How One Golf Course Architect's Journey with Non-Verbal Autism Transformed into a Foundation of Hope
Discover Bobby Weed's inspiring story of navigating his daughter's non-verbal autism diagnosis, leading to the creation of the HEAL Foundation that supports families affected by autism through vital services and resources.
Bobby Weed's golf course design business was thriving as he entered the new century. But suddenly, he and his family faced unexpected challenges.
Their youngest daughter, Lanier, born in 1998, stopped walking and talking at just 18 months old. She was later diagnosed with nonverbal autism.
Weed remembered a time when someone just randomly started flipping off breakers on an electrical panel, comparing it to what was happening with his daughter.
In 2020, the US Centers for Disease Control and Prevention (CDC) estimated that 1 in 36 children, approximately 2.8%, were diagnosed with autism spectrum disorder (ASD). This increase in awareness and understanding of the developmental disability is a positive step forward. However, when Lanier was diagnosed, Weed and his wife Leslie felt like they were entering a world that lacked proper education and awareness, despite living in Ponte Vedra Beach, Florida.
In 2000, the CDC identified only 1 in 150 children with ASD. This condition is nearly four times more common in boys than girls. Lanier's case was particularly unfamiliar to professionals and Weed due to these statistics. The family was in what Weed described as "uncharted territory."
"We didn't even know what autism was," he shared. "We had to teach and train ourselves."
It completely transformed our lives and our family. We were suddenly in a canoe crossing the Atlantic alone, while everyone else was on a large ship. The journey was incredibly tough and presented challenges in every aspect.
Leslie with Lanier in 1998.
Leslie with Lanier in 1998.
Bobby Weed Golf Design
I was amazed to discover how strong and determined my wife is.
Weed traveled to various specialists in the US in search of help, while his wife dedicated herself to learning everything she could about autism. She attended conferences and was even mistaken for a doctor or lawyer because of her extensive knowledge.
The relentless pursuit of a solution brought about significant disruption in Weed's life. To shield his other daughters, Haley and Carlisle, from the chaos at home, they were sent to boarding school while a multitude of doctors, therapists, and specialists attended to Lanier. Weed even had six people working to aid Lanier at one point.
Financial strains were also felt as Weed traveled for course design projects, feeling like a "human ATM." Despite the potential strain on his marriage, the challenging experience ultimately strengthened the bond between him and his wife, who had first met on a blind date related to golf.
Weed was surprised to discover a side of his wife that he had never seen before.
He was amazed to learn that she was a true warrior, always fighting for their family. Despite the challenges of dealing with autism, Weed found that it actually brought them closer together and strengthened their marriage and family.
The Weeds kayaking the Intracoastal Waterway in St. Augustine, Florida.
The Weeds kayaking the Intracoastal Waterway in St. Augustine, Florida.
Bobby Weed Golf Design
Enrichment
In 2004, a couple in Northeast Florida decided to create the Helping Enrich Autistic Lives (HEAL) Foundation to share their knowledge and support other families facing similar challenges related to autism.
Since its inception, the foundation has raised over $5 million to help the local autism community. Every year, they provide grants during Spring and Fall to different organizations associated with autism. Additionally, they have also allocated $500,000 to improve education for students with Autism Spectrum Disorder (ASD) in both public and private schools.
They have provided funding for the training of autism service dogs, donated over 500 iPads and 200 tricycles to students with special needs, and supported various summer camps, including Help Us Golf (HUG) Camp.
The summer camp takes place at TPC Sawgrass in Ponte Vedra Beach, Florida, which is known for hosting The Players Championship and other notable events. Local PGA professionals participate in teaching children with autism how to play golf. While playing on the famous 17th Island Green is a highlight, learning to swing a club at one of the world's most renowned courses is just one aspect of the overall experience.
"It's more than just a golf camp," Weed mentioned.
"They teach the kids about the wildlife on the course, the water features, how to change cups on the greens, and even how the grass is maintained. It's a really educational experience."
Lanier (second from left) leads a HEAL event at Jacksonville Zoo.
Lanier (second from left) leads a HEAL event at Jacksonville Zoo.
HEAL Foundation
Since hosting a Gala in 2007 to celebrate being chosen as the PGA Tour's "Adopt-A-Charity" recipient, TPC Sawgrass has been a regular location for the HEAL Foundation. The foundation was selected as the sponsor for a tournament at the course.
After working for the PGA Tour for 13 years, Weed decided to start his own design firm in 1996. His extensive network within the golfing world has been a huge asset for his new venture. Some of the most prominent figures he has worked with, such as design mentor Pete Dye and seven-time major champion Arnold Palmer, have shown their support for his foundation. In fact, Weed recalls a generous offer from Palmer to use his private plane to fly him and Lanier to see a specialist in Chicago.
Design by Nichols Architects / Photo by Mike Butler
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Lanier lives in a nearby residential group home, which offers round-the-clock support for adults with autism.
“It’s been good for our daughter and it’s been good for us,” Weed said.
We spend time with our daughter every weekend, which gives us the reassurance that she is safe and secure. It's comforting to know that we can still be a family and coexist peacefully.
Editor's P/S:
The article serves as a poignant and inspiring narrative, shedding light on the challenges and triumphs faced by families navigating the complexities of autism spectrum disorder (ASD). Bobby Weed's personal journey with his daughter, Lanier, highlights the transformative power of love, resilience, and the unwavering pursuit of support. The unwavering commitment of Weed and his wife to educate themselves and advocate for Lanier's well-being is a testament to the strength of the human spirit.
The article also underscores the crucial role of community and support organizations like the HEAL Foundation in providing resources, education, and a sense of belonging to families affected by ASD. The foundation's initiatives, such as the HUG Camp, empower individuals with autism by fostering their passions and creating inclusive experiences. Through their efforts, the Weeds and the HEAL Foundation have made a significant impact in raising awareness, providing support, and empowering families and individuals living with ASD.
