Four-year-old Amir Santana loves water. He jumps in anytime he sees an opportunity. And because Amir also has autism, his mother, Dimarylee Valentin, has struggled to find swim classes that work for her son to help keep him safe.
"I wanted to feel comfortable knowing that my kid is understood," said Valentin, who lives in Lawrence.
In previous classes, the instructors weren't as patient with Amir as he learned. Finally she found Swim Angelfish, which offers swim safety classes and training resources tailored to kids with autism and other disabilities.
On a recent summer day at an indoor pool in Salem, New Hampshire, Amir was practicing holding the side of the pool while counting to five, and dunking under water. Valentin has already noticed an improvement in a few months.
"He waits until somebody's in the water for him to go in. He holds the sides of the pool," she said.
Many kids with autism like Amir are both prone to wandering away and drawn to water. This combination makes parents like Valentin especially worried: Accidental drowning is the leading cause of death for kids with autism.
According to the National Autism Association, children with autism are 160 times as likely to drown than other kids. The organization encourages first responders to always check nearby water first when a child with autism is missing.
An 8-year-old boy in Clinton, Mass., drowned in a pond in June after wandering out of his house. In recent years, authorities are becoming more worried — 2024 saw a spike in drownings nationwide.
This summer, the state launched a public awareness campaign to educate families and caregivers about how to keep kids — especially kids with disabilities — from drowning.
"The timing of this campaign coming out in June was really great because people are thinking about water more," said Sarah Peterson, the Department of Developmental Services commissioner. "But this isn't something that is only an issue during the summer either. There have been tragic stories that we've heard in the news all times of year."
Just this past January, a 6-year-old girl with nonverbal autism died in Norton, Mass., drowning in an icy pond.
The state's new safety toolkit highlights tips for keeping kids safe, including through inclusive classes like Swim Angelfish. The goal is to educate not only families but also first responders and neighbors all year round.
"It's a community responsibility," Peterson said.
Tragedies around the water
Cindy Freedman, an occupational therapist, started Swim Angelfish 27 years ago with co-founder Ailene Tisser, a physical therapist. They developed a curriculum for swim classes that's tailored to kids with sensory or developmental challenges and offer trainings online and around New England.
"We have, unfortunately, a lot of tragedies in, near and around water," Freedman said.
"Sometimes it's because somebody is bolting away," she continued. "Sometimes it is because they're just so highly attracted to the water that it just supersedes safety and being in the water is so satisfying for them."
She said some kids with autism are attracted to the sparkly surface of water. Some may like the pressure of water on their body as they go deeper, like a weighted blanket. And many are less likely to have taken regular swim classes.
In Salem, Angelfish instructor Carey Seekell was working with a group of kids as they practiced jumping into the pool. Even in this small group, one of the parents had already experienced a tragedy: her child had drowned, and she wanted to make sure her other daughter would be safe around water.
Seekell says that practicing in a pool prepares them for the real world.
"When we have kids go underwater, it's a way to help them feel what it feels like to have water in their face," Seekell said. "So if, God forbid, they fell in the pool, they would have that feeling of water on their face and it wouldn't cause a panic."
She was helping 4-year-old Liam, wearing a shark fin floaty on his back, as he swam back and forth. It was a sign of progress, said his mom Jen Shepard.
"He's made so much progress where he's not intimidated by it anymore," said Shepard, from Andover. "He's putting his face in it. He understands the concept of kicking his legs and scooping his arms and just has a great time with it."
The kids practiced a routine of holding the side of the pool.
"'Taking side' is another safety thing that we do. ... If you fall in the pool, if you get tired, go to the side — 'take side' — hold on and don't let go until a parent or the instructor says to let go," Seekell said.
Many of the kids who come to Angelfish had tried previous swim lessons but didn't make progress, or the instructors weren't familiar with autism and other disabilities.
Like Allison Kanakis, from Nashua, who was there with her daughters Charlotte and Eleanor.
"Now they're, like, obsessed with it," Kanakis said. "When we were coming here, Charlotte told me this is her favorite activity that she does, ever."
During the classes, a big focus is on adjusting to discomfort and fear in the water. Kids focus on routine and repetition, learning to roll onto their backs to float and breathe and get used to safely putting their heads under the water. They also work on getting comfortable with someone grabbing them while they're in the water in case someone is trying to rescue them and they get familiar with a rescue tube and other flotation objects.
Julia, from Lexington, was swimming laps in the pool. She started taking classes five years ago.
"In the very beginning, she was crying every class. She was really afraid," said Patricia Raupp, Julia's mom. "Now she can swim independently without floats, and we can see that she's safe [in] the pool now."
Tips for outside of the pool
Freedman says that parents can start small with daily practices at home. For example, at bath time, they can encourage their kid to get in the routine of always asking permission before they get in the bathtub. That way, if they are ever around another body of water, they will seek out an adult before going in.
She also recommends letting kids practice with emergency flotation devices, like life preservers or rescue tubes, whenever they're at the pool or beach.
"If you're a parent or a caregiver taking your swimmer who might be highly attracted to the pool, my number-one tip would be [to] familiarize them with a rescue tube," Freedman said.
Preventing drowning isn't just about swim skills, Commissioner Sarah Peterson said, which is why the public campaign includes a safety checklist, including tips like making sure doors, windows and fences are secure; introducing their child to local police and firefighters; getting to know neighbors so they can spot dangerous situations and secure their own pools or water sources; considering a tracking device, and; spending time with other families with kids like theirs.
"When I talk to parents, I think that one of the biggest things that you hear is that they feel very alone and that they feel very isolated," Peterson said. "Offering opportunities for parents to engage with one another is a great way to ensure that parents have the information that they need, but also really feel supported by people who also have lived experience."
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