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Shravonie tries a pop-up

Shravonie tries a pop-up

“The best surfer out there is the one having the most fun.” —Phil Edwards

Magnolia has been surfing since she was 6 years old. The first time we tried surfing with her, we were going through a clinical trial. Our clinical site was in San Diego, specifically La Jolla. I remember so clearly the day we decided she should surf. We had a long day at the clinic, and she was exhausted and miserable. It was our second appointment, and we made a mental pivot. Instead of making her participate in the clinical trial, which seemed mundane and medical, we wanted to create fun experiences in San Diego.

The first time she surfed, there was a surf shop that claimed to provide adaptive lessons. But we weren’t sure it would work, and we spent a lot of time talking with them to make sure this could be a safe experience for her. The smiles and laughter from that day of surfing kept me going throughout the trial. Every appointment we had in San Diego, she surfed.When we moved to the East Coast, we wanted to keep up our surfing traditions. AJ found an organization on Long Island called Surf For All. Jeanine Sorensen is an OT, and she partners with world-class surfer Will Skudin to create an incredible adaptive program. The Skudin family runs a swim school and surf school on the island. Every summer, Magnolia and other kids like her get a week-long surf camp on Long Island, run by Skudin Surf. The program and the people are amazing and genuinely care about all their surfers. The first time we were part of the surf camp, I cried. It was the most inclusive environment we had ever been a part of.

The families reflect on their surfing adventure

It was a no-brainer to surf with Skudin Surf and Surf For All for our surfing adventures. We also knew we wanted to surf with the Carlo family. Anne Carlo lives on Long Island with her daughter Shravonie, who also has Rett syndrome. Anne adopted Shravonie when she was 5 and fosters other children with special needs. We met her and her family at a surf camp through Surf For All and knew they’d be down for adventuring. The sheer randomness of meeting another family coping with Rett syndrome at a surfing event on Long Island let us know these were our people.

We know Magnolia loves surfing, but the “why” was hard to really pinpoint until Shravonie helped us understand it.”

Jenny Tesler, Magnolia’s Mom

Shravonie is an absolute joy to be around. Unlike most individuals with Rett syndrome, Shravonie has some speech. The day we all met up to surf together, she was elated and brought everyone to tears with her excitement and love for surfing. While we know Magnolia loves surfing, she does not often scream with joy and is unable to use her words while at the beach. Of course, she can still communicate—she smiles and answers our yes/no questions, but Shravonie was really able to express how surfing made her feel. She told us the water makes her body feel good, and that was so heartwarming to find out. We know Magnolia loves surfing, but the “why” was hard to really pinpoint until Shravonie helped us understand it.

I was so happy for her that she was able to communicate that for us. She opened my eyes to the absolute joy of feeling free in the water. We asked Magnolia if the water made her feel free as well. It was an emphatic “yes!” Now, we don’t just go surfing in order to create fun experiences. Now, we go because we know it makes her feel free.

Episode 8: Thumbnail

Episode 10: Kayaking With the
Alvarado Family

Magnolia and the Alvarado family grab their paddles and kayak through the islands of the Long Island Sound.

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