2024 Person of the Year: Kami-Leigh Agard
By Katie McFadden
Time Magazine has their person of the year. Since 2021, The Rockaway Times has ours. In a community where so many people go above and beyond to make the world around them a little better, the choice was not easy. But we decided to go with someone a little close to home, who has gone to great lengths to help the autism community around the peninsula, and the world. Over the past year and even decade, Kami-Leigh Agard has proven to be beyond deserving of the title as The Rockaway Times’ 2024 Person of the Year.
It may seem a little biased to select a Rockaway Times writer as Person of the Year, but it is not just what she’s done in the newspaper, but for the community at large through Rockaway Beach Autism Families (RBAF), that earned her the title. If anything proves how deserving Kami-Leigh Agard is, it was her response when asked be Person of the Year—“No, no, no, no, no!” And her response when asked what she believes to be her greatest accomplishment this year with RBAF— RBAF’s First Annual Community Awards Ceremony in October, in which Agard, paying out of pocket for the beautiful ocean-inspired awards and food to go along with it, thanked everyone in the community who has helped her make RBAF a success, from organizations, to individuals, board members and the group’s many volunteers and supporters. “It was so long overdue and there’s so many people I wanted to thank, and I was happy to finally say thank you,” Agard said.
But as the 2024 Person of the Year, we’re giving Kami her overdue flowers and thanking her for all of the work that she’s done for the local autism community, giving those special families an invaluable resource and a place to turn to when a doctor gives a parent those difficult to comprehend words: “Your child has autism.”
In the spring of 2010, Agard found herself in that very place, getting confirmation that her then 18-month-old daughter, Soanirina, had autism. “It was a foreign thing to me. I never knew about it, never heard of it. I still don’t understand it, to be honest,” Agard said. But in that 14-year journey, Agard has found herself as a beacon shining in the community, with knowledge, lessons and information she’s learned through the journey of parenting a “severely autistic,” nonverbal, yet physically strong and beautiful now 16-year-old daughter.
Agard’s 2024 looks much different than the journey she imagined, a journey that took her everywhere. Although with Trinidadian roots, Agard grew up in Manchester, England, with an accent that still catches those who meet her by surprise, as she came to New York at age 16, when her mom made Rockaway home in the 1980s. It was where Agard first dabbled in journalism, working at an internship under Kevin Boyle, the then editor of The Wave, before heading off to Boston on a full scholarship to Northeastern University, where she double majored in journalism and Latino, Latin-American and Caribbean studies. “I thought I was going to be a foreign correspondent, covering drug cartels in Colombia. My goal was to cover Pablo Escobar,” she said. She worked for a few years doing media relations for Northeastern, before moving to London to enter the newspaper business. “I got a job at a newspaper making 200 pounds a week, begging my mom for money, between paying rent and traveling. She told me, ‘Come to New York, they have the best jobs there.’”
Back in New York, Agard landed a job at Fox News, working as a primetime producer, providing copy for some of Fox’s biggest primetime anchors at the time. But that was short-lived. “After about three years, I said I couldn’t do it anymore. It wasn’t my passion. I wanted to be out on the scene instead of in a studio,” she said. So she quit. And soon after, her aunt, who she was renting a Manhattan apartment from, and who ran a fashion production company, got her into the fashion biz. Agard quickly learned the tricks of the trade from sketching to pattern making to technical design, attending courses at FIT to learn more skills. For a short while, she had moved to Forest Hills but found herself moving back home to Rockaway around 2007, after a relationship had gone awry.
But in Rockaway, she met a man from Madagascar, Rado Rafaringa. The two got married and in 2008 welcomed their daughter, Soa. And from there on, life took her on a completely different, and unexpected journey. As Soa got older, the challenges of autism became a bigger part of her life, and simultaneously, since 2014, Agard was diagnosed with an autoimmune pancreatic disorder, landing her in and out of hospitals since, and ultimately leading Agard to leave the fashion world. Meanwhile, her marriage was put on the back burner, ultimately leading to her and Rado separating, although remaining as a strong co-parenting team for Soa, the star of their show called life. “He’s a better dad than I am a mom,” Agard says, giving Rafaringa credit for his patience and willingness to let Soa experience the adventurous side of life, taking her ice skating, snowboarding, roller blading and beyond.
For Agard, life is all about Soa. “I live for my daughter. I literally live for her. Otherwise, I’d be doing something different in life,” she admits. But she knows some plans are bigger than the ones we make for ourselves. “Whatever reason, God planted roots with my mom here in Rockaway and me having a child with autism. God had his reasons and maybe it was to help the autism community here,” Agard said.
In 2016, she decided to return to her writing roots and start doing something with the new and ever-growing knowledge she had of autism. Agard approached her old internship boss, Kevin Boyle, in the cab stand where The Rockaway Times had its humble beginnings, and asked Boyle if she could write a column about autism. “He said, ‘You know I don’t pay for columns, right?’” Agard recalled. But for her, the opportunity to get back into writing and share her knowledge was enough. “Life With Our Artistic Child” began as a bi-weekly column in September 2016, and it wasn’t long until Agard started receiving e-mails from others in the community facing the same challenges. “I thought, there are other people like this. Maybe I should do a support group so people can talk and learn something,” she said. That first meeting was in November 2016 at then Willderness Yard café, owned by Will Francis. “I thought, I’ll get tea and pastries and pay for it. One person showed up,” she said. That one person was Christine Dydzuhn, who at the time, encouraged Kami to try again and continue to hold meetings, and who Agard says still stands by her today. As things started to look up, Agard’s column also led to a part-time position with The Rockaway Times, putting Agard back into the journalism world, as her autism support world started to grow.
As she kept writing, more people started showing up to meetings. “People came from everywhere. It didn’t matter if you were Jewish, Catholic, Irish, black, white, old, young, single, from a rich family, I was so astounded by the people that started showing up at meetings,” she said. At some point, she met Jon Kiebon, a musician who asked her about hosting Rock Out for Autism to raise awareness for this growing diagnosis that was starting to emerge out of the shadows of society. The first Rock Out for Autism concert was held at Rippers in 2017, and by the end of 2017, Agard was planning her first holiday party for what was becoming a growing organization, Rockaway Beach Autism Families. “Richie Knott of the Knights of Columbus had come to Rock Out for Autism, and said, ‘if you want to host meetings at the Knights, you can.’ So we started hosting meetings there and then had our first holiday party. Twenty people showed up,” she said.
On Sunday, December 15, Rockaway Beach Autism Families hosted its sixth annual holiday party. More than 250 people showed up. That’s just the tip of the iceberg of the example of the growth RBAF has experienced since 2016, with 2024 being a banner year for the organization. From Rock Out for Autism to the holiday party, to parent Matt Wolf coming up with the idea for a skateboard and pizza party in the local skate park, to a Halloween Beach Treasure Hunt, where those on the spectrum can dress up in costume, to a Dance Out for Autism summer dance party at the concessions, to a Back-to-School barbecue turned Carnival, in which everyone can enjoy games, food, rides and a backpack filled with sensory items, and the very first Rockaway Walk for Autism Awareness, started just in 2023, RBAF has become a source of endless fun where those on the spectrum can get together and not feel so alone, and others in the community can start to see firsthand what autism can look like, in its broad spectrum. “I always tell people, if you meet one person with autism, you’ve met exactly one person with autism,” Agard said, explaining just how vast that spectrum can be. The range of that spectrum can be seen among RBAF’s members, from adults who have graduated high school, to those who may speak few words but have artistic abilities that could land their work in museums, to nonverbal children like Soa, who may not be able to speak, but could give an Olympian some competition with her physical abilities.
RBAF’s monthly meetings have also become an invaluable source for resources, as Agard has begun to bring in experts in various important subjects like those who are familiar with Individual Educations Programs (IEPs) and those familiar with the NYS Office for People With Developmental Disabilities (OPWDD), workshops with the NYPD so officers can become familiar with signs of those on the spectrum, plus martial arts experts, like senseis from World Champions Karate (now ZenTora), who taught a class, and then started offering special classes for those on the spectrum. “These kids now have yellow belts, and this just started with one of our meetings,” Agard said.
And while Agard doesn’t claim to be an expert in anything when it comes to autism, she has utilized what she’s learned through her own experiences with her daughter, to be a resource and advocate for others. “Recently the Department of Education told a mom that her daughter was going to go to a school in Bellerose, and I knew about that from my own experience, so I said no, wrote a letter, called a few people and now her daughter is going to school on Beach 135th Street. If I knew about that in 2013, my daughter probably would’ve been going to Beach 135th Street instead of Bellerose,” Agard said. “All of a sudden, I’ve found myself wearing this hat and people say, how can I repay you, but knowing I can do this and not knowing I could’ve done this before, I’m learning so much, and I know it will come back. I’ve learned how to be a take charge person and most people would see me as a pussycat, but I learned how to be aggressive because of Soa. She taught me how to put my big girl panties on,” Agard said.
And as if advocating for Rockaway families wasn’t enough, Agard’s efforts go far beyond the peninsula. Every time there’s a major news story about another place in distress, whether it’s because of a natural disaster like a hurricane, a tornado, a fire, or even war, Agard finds a way to support autism organizations in those locations. From Houston to Puerto Rico, Kentucky to Ukraine, to Maui, and most recently, North Carolina, working with ABA Tree, once tragedy hits, Agard starts researching ways to help those on the spectrum in those communities, and hosts toy drives, supply drives, benefit concerts and other fundraisers to provide the autism charities in those areas with what they need.
“I just remember with Hurricane Sandy and having to evacuate to a Comfort Inn in Howard Beach with my mother, grandmother, Rado, and Soa, and I’m listening to this little girl ask this mom from Breezy Point when they could go home, and she looked at me and said, ‘I don’t know how to tell her our house burned down.’ We also lost everything but the kitchen spoon in the flooding, but I just remember waiting in food lines, or walking to the Cross Bay Bridge to get cell reception, and all I had were these muddy boots. I worked in the fashion industry. I used to be very materialistic, but when all you have is one pair of muddy boots, you realize that’s all you need. It changed me as a person. But for those on the spectrum, going through these tragedies, these kids’ whole routine is disheveled. What can we do to give them some sense of normalcy?” she said about why she helps those abroad.
As RBAF has grown and evolved so much since its humble beginnings, earlier this year, Agard started to realize more funding would be necessary. So she took charge to start applying for 501(c)3 status, which she was approved for in the spring, and will now allow her to apply for grants for the organization. Through meeting so many people, Agard was able to obtain some major funding this year through another New York based autism group, Rewired for Autism, for which local resident Mary Glynn, sits on the board. “She was the first person that really recognized the potential of RBAF in terms of needing funding to make certain things happen,” Agard said.
And with that, Agard is looking toward the future of RBAF. “2025 is going to be our year,” she said. Agard has an ultimate dream of acquiring a physical space for RBAF. “I’d love for us to have a physical space where people can come in and get services, get information, whether it’s an education waiver, state services, IEPs, how to navigate the public school system, and a brick and mortar space where we can start a business so those on the autism spectrum can have a job, something like a printing company, where those with autism can do physical labor and bring home a few dollars,” she said. Another goal is to provide more access to mental health resources. “2025 is about mental health. It’s paramount with the level of depression among teens on the spectrum, and also parents. A lot of parents feel helpless. I’m working on doing a monthly mental health workshop with a hospital and bringing in someone who’s licensed to do workshops,” she said. And Agard plans to continue to serve as an advocate in whatever way she can. For example, earlier this year, her daughter had a close call when she ran out of the house, despite the family’s best efforts to constantly keep the doors secured, and Soa got tapped by a car coming down their block. As a result, Agard started advocating for Rockaway to have signs put up in some areas where those on the spectrum live, to warn others to slow down, as they may encounter someone on the spectrum who may not be street smart. Working with local Councilwoman Joann Ariola, that simple spark of advocacy for her own neighborhood and child, could potentially lead to citywide approval for such road signs.
After accomplishing all of that and more, while even dealing with the recent challenge of a school bus issue that has resulted in her daughter being home for almost two months, humble as ever, Agard insists her biggest accomplishment in 2024 was being able to thank those who have helped her, at her award ceremony in October. Among them, Agard thanks her core team, including parents, Venus Ramos, Christine Dydzuhn, Matt Wolf, Pat Harvey, Rado and others, to Richie Knott for giving her access to the Knights for meetings and celebrations, to Owen Loof, the Best Dressed Man in Rockaway and the Knight’s Grand Knight, for continuing to give her that access, and frequently emceeing her events, to Joe Featherston of St. Camillus Special Olympics for offering advice and support, to the many local businesses including Whit’s End, Harbor Light, The Rockaway Hotel and beyond, that have consistently given donations towards RBAF raffles and events, and to The Rockaway Times, especially former publisher Kevin Boyle, for giving her the opportunity to plant a seed and grow RBAF into what it is today. “I am very thankful to everyone. Every entity, resident, who, even though autism for a lot of people is something people don’t like to talk about, have shared a lot of love for the autism community. This was never my plan. It all started with a column in The Rockaway Times.”
For more information about RBAF, check out: www.rockawaybeachautismfamilies.org and for information on how to support the organization, email Kami at: kami@rockawaybeachautismfamilies.org
