Making the joys of surfing accessible to kids with disabilities Transcript

Finally tonight, a story from the beaches of Little Compton, Rhode Island. Rhode Island PBS Weekly, senior producer Justin Kenny, brings us the story of one non-profit knocking down barriers to surfing for children with disabilities.

At Gnome Surf we surf with over 3,000 athletes and families. What we do is surf therapy. Our athletes at Gnome Surf are typically neurodivergent. Where for all kids, we’ve built our program on inclusion, but I’d say over 95% of our athletes either have autism, Down’s syndrome, ADHD, depression, or anxiety.

Cash and Hollis are 13 years old. They’re twin boys. They were diagnosed at 15 months of age with autism and a handful of other diagnoses. Both of my boys are pretty much nonverbal. Hollis is nonverbal. Cash has some language. These are kids that typically do not get invited to birthday parties or sleepovers. To see them having fun doing something that typical kiddos do. It’s a feeling like no other. Every time I stand on that shore and I watch my kids out on the board, I always think to myself, this is what parents of typically developing children must feel like when they watch their kids play baseball or football or soccer, and you just feel so proud.

Abby wasn’t meeting milestones, so eventually around six months, her pediatrician suggested that we look at an MRI to maybe see if there’s anything else going. On on that MRI it showed that she had lesions on her brain and then elevated lactate, which were consistent with Leigh’s. So at that point, what they knew about Leigh’s disease, which is a mitochondrial disease, they said she had about two years to live.

(02:06)
That has since changed. She’s 11, she’s been in a drug study, and we’re just trying to do as much as we can to live a full life for our whole family. And Abby getting out, doing stuff like surfing and horseback riding. We try to do what we can. Abby loves adventure and she loves water. Any type of water play, water activity always brings her to life. When we had the opportunity to try surfing, I was like, we’ll try it.

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I was a little nervous of how they would support her since she’s a hundred percent reliant on somebody to hold her up. She can’t sit up on her own. She can’t walk. So I just saw some videos and I said, well, they seem to have a good handle on it. And the first time I came, they’re like, mom, don’t worry. We’ve got it. And I was like, okay. Even just pushing her across the sand, I was like, I’m so used to doing this stuff. So to give all the control away and watch it, it was so enjoyable. Her smile, her laughter, and everybody around her, it was awesome, and we couldn’t wait to have another opportunity to do it.

Do you like surfing?

Gnome Surf has saved my life. I’ve struggled with ADHD, depression, anxiety, and when I’m out there on the waves with these kids, everything slows down, it calms down for me. And I truly get my medicine, so to say, just like these kids. It’s made my life 1,000 times better. I’m lucky enough to know what my purpose on earth is. Do I ever cry? Yeah, absolutely. I cry. I try to shelter the tears a little bit from the families because I know it’s pretty emotional for those parents too. It makes me quite emotional to know that we’re delivering something to this family that normally they don’t have the opportunity to partake in and to see the parents smile and to tear up and to see their child breaking barriers or proving the scholars wrong is something that is truly meaningful and deep for me.

How do you not get emotional? How do you not get emotional when you have a child who is nonverbal and all he can do is smile from ear to ear because he’s just so happy. How do you get emotional when you have a child who’s wheelchair bound or medically fragile and you see them out on the board? Those are things that you just never picture for your own kid, and you see them doing something that makes them find joy.

She could be feeling crappy at home or even in the hospital when she starts to perk up. Just sitting her by the sink and her playing with water just, I don’t know, makes her happy. So I think just being out there when you’re surrounded by it in her element. Are you a surfer girl? Yeah. Can you say thank you? [inaudible 00:05:14] Thank you. Thank you.