Finding a swimming program tailored to a child with Angelman syndrome

Our 3-year-old son, Jude, who lives with Angelman syndrome, has always loved the pool. He started taking swimming lessons when he was just 6 months old.

During the early stages, it was a fun social activity. We’d hold Jude’s torso as he’d bounce gently in the water or listen to instructors sing songs. Not only was Jude able to fully participate with peers his own age at the time, but we also became friends with other local parents with young children of their own. Even strangers would approach us to tell us they’d never seen a child as happy in the pool as Jude.

But between the ages of 2 and 3, something subtle began to change. The children Jude had grown up with started becoming more independent. His peers were jumping into or climbing out of the pool on their own, diving underwater to collect toys, or following instructions like blowing bubbles in the water. These were all activities Jude was unable to do.

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By the time Jude turned 3, we realized that the swimming program wasn’t built for him anymore. Instead, it was for young children who were becoming independent swimmers (and toddlers younger than Jude, as he was being held back).

Deciding to leave and commence one-on-one disability swimming felt inevitable but no less emotional. Since Jude was diagnosed with Angelman syndrome at 16 months, we’d known his path would look different from that of his peers. But knowing something didn’t make this reminder any easier to accept — that the life we’d expected for him, such as playing cricket on the weekends, wasn’t possible.

Not only did Jude have to leave his friends, but so did we. Social swimming was one of the few activities Jude had where he was surrounded by children his age, and we’d developed friendships with parents walking a similar, yet not identical, path. Stepping away from that brought a quiet sense of loss.

Participation also isn’t always straightforward for specialized activities. Programs offering one-on-one lessons or instructors experienced with disabilities can be limited — families may need to drive farther, accept less convenient times, or join waitlists hoping that a spot opens up. In our family’s case, our Sundays are centered on the pool, with aquatic therapy —  which can help improve strength, coordination, and tone — in the morning, and one-on-one disability swimming in the afternoon.

Further, there are ripple effects for the family. When a child requires specialized or individual activities, schedules become more complicated and families may need to divide and conquer so that everyone can get to where they need to be.

Finally, there’s the work involved in researching the right centers, trial and error in determining whether a new environment is the right fit, and needing to explain to yet another person everything about Jude.

Ultimately, we knew that Jude adored swimming, but needed a setting that actually worked for him. Instead of trying to keep pace with a group, he now has an instructor who focuses entirely on him. His swimming lessons focus on water safety such as assisted floating, kicking, and holding onto the pool’s edge. Rather than being worried about whether Jude is holding up in a class with other children, he’s fully supported at his own speed.

The hardest part wasn’t accepting that Jude needed a different kind of swimming lesson. It was accepting that something that had once felt so ordinary — weekend swimming, familiar faces, and watching children grow alongside one another — was no longer going to look the way we had imagined. Jude still loves the water but needed a different path through it.

Sometimes, parenting a child with a disability means letting go of the version you had pictured, while making sure there is still room for the things they love.

Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Angelman syndrome.