But, at every level in our society, having a disability is perceived as “not normal.” There’s a standard of where your kid should be… and then there’s a clearly defined line between what’s considered normal and not normal. For any kid who is different or disabled, there’s a fixation on “How do we fix this?” in order to achieve this sense of “normalcy.” It’s exhausting. I’d love for people who don’t have any connection with people with disabilities to normalize it.
One of the many things inclusive swim programming for kids with disabilities does is provide this sense of normalcy that a lot of our families don’t get to experience… and this starts with the locker room. Before class, all of the families who have kids with disabilities are in the locker room together, getting ready for class. tantrums, vocalizations, drooling, or even the presence of a wheelchair differentiates our families in shared spaces. It might even look alarming to some, but for our families, it’s a normal part of the process of getting ready for the pool. Because we’re in a group together, it’s a supportive environment. It also creates opportunities for others in the locker room to see what our lives are like in this shared space, even when others may find it challenging.
Very rarely do families with kids who are disabled ever get the chance to get together or have the opportunity to hang out and talk. Having a shared experience with other families of children with disabilities makes it a safe place. Having interactions with similar kiddos and seeing caring volunteers work with our kids in this amazing, warm structured environment, it is a godsend.
Creating Opportunity
What I like about the program we attend (SNAPkids) is that the approach to inclusive swimming is that it’s not about meeting a certain goal or someone else’s criteria. There’s no finish line so to speak; it’s about how our kids can progress based on their abilities and have fun while they do it. Swimming in an inclusive program creates an opportunity for kids to work on developing swim skills without the heavy burden of having to achieve specific, structured goals. When Sammy was smaller, it felt like this structure and goal-oriented focus was every second of every day. In the water it’s “just” swimming. It allows a space for a kid whose routine is already packed with physical therapy and occupational therapy to go and be active, move with joy and freedom, interact with others, and have fun. A while ago, we had a routine where I’d take Sammy swimming and my partner would take the day off. There’s a normalcy to being able to drop your kid off to do an activity, and then getting to sit back, watch, and enjoy.
It’s important that Sammy gets to develop his own relationships with the volunteers and other kids in the water. His weekly swim is one of the few moments outside of school where he spends time with other people and is wholly independent from his parents doing his own activity and enjoying his own autonomy separate from us. Swimming has also given Sammy a newfound body awareness and it’s just been an incredible experience. And to be able to find a space and have that all navigable for people in wheelchairs and for kids of all abilities is amazing.
The reality is that it’s difficult to find activities that Sammy can participate in. One of the singular biggest losses for us during COVID was losing our in-person inclusive swim program. It was heartbreaking. It meant he lost out on the socializing that comes with his time interacting and befriending volunteers who work for the program, as well as precious time in the pool being able to move his body freely.
Why Shouldn’t Kids with Disabilities Swim?
When your child is given certain diagnoses, it feels like you’re being dictated to what your child is capable of. You hear doctors say, “Your child is not going to be able to do this,or your child is not going to be able to do that.” But how do they know? We don’t know. Why shouldn’t kids with disabilities swim? Why shouldn’t they be able to move their body in whatever ways they can?
Swimming is the great equalizer and an inclusive swimming program can provide space to accommodate all abilities of children to participate. Mobility is not a limitation. I want to acknowledge that it’s a lot of hard work on the part of the parents to do these activities for their kids because it involves planning and coordination and having the right equipment, like a wheelchair accessible van, but it’s so worth it.
Another unique aspect of the inclusive swim program we participate in is that there are volunteers in the pool, many of whom are students pursuing degrees in the medical field, where this kind of one-to-one experience with kids like Sammy is really formative. Some volunteers look like they’ve been working with kids with disabilities forever. And when you see what volunteers who receive training to work with kids in the water can do, it’s inspiring because it widens the possibilities of what other activities could be made available for kids with disabilities. The experiences the volunteers have in working with kids like Sammy also helps to normalize disability. You realize this could be replicated elsewhere or with other activities with someone like Dori Maxon, who has the knowledge to make these things accessible. Though in reality, there are very few activities available for kids like Sammy. The Bay Area needs more programming available for children with disabilities.
There’s no cookie cutter way to navigate the path ahead as the parent of a child with disabilities. You learn to be adaptable and adjust expectations. Inclusive swimming is a great option to help your child’s light shine brightly.
Sammy swims with SNAPkids, founded by Dori Maxon PT, in the San Francisco Bay Area. SNAPkids’ mission is to enrich the lives of children and young adults with disabilities by providing community-based accessible swimming programs. These programs enable children to swim, exercise, make friends, and just be kids having fun in the water. Visit snapkids.org
ABOUT THE AUTHOR:
Joey Enos lives with his partner Anna MacNeil. They have recently moved to San Mateo to raise their 9-year-old son, Sammy. Raised in Alameda California, Joey Enos has been an artist his whole life and has had a professional career in museum collections and art services throughout the Bay Area. Joey received a Master of Fine Arts from UC Berkeley Art Practice in 2014. Joey published his first book in 2022, Radical As Folk, a historical document of the history of the Emeryville Mudflat Sculptures. After living in Emeryville for many years, Joey and Anna moved the family to the San Francisco Penisula for Sammy’s schooling. Sammy has been diagnosed with Cerebral Palsy, Epilepsy, and Cortical Visual Impairment. With the security of being close to a supportive network of schools and services, the family enjoys exploring new and exciting experiences for Sammy and the family, including adaptive surfing and sports.
Read the article here.