Originally posted on the Baton Rouge Parents magazine website.
Although he didn’t speak until he was five, Cohen Swain is finding his voice. The 15-year-old is on the autism spectrum and has written a poem, Hold On, I’m Trying, that has gone viral.
Originally an assignment for a resilience project in Catherine Lucas’s freshman English class last fall, Cohen’s poem has been copyrighted. A video of Cohen reading it was published by Ascension Parish Schools as part of Disabilities Awareness Month in March and has been shared more than 100 times from its Facebook page and viewed more than 50 times on its YouTube channel.
The poem shares Cohen’s memories and struggles, each stanza ending with “Hold on, I’m trying,” something he says often.
“When I read it, I see everything separate; I can separate all of those memories,” says Krystal Swain, Cohen’s mom. “It was emotional for us and everyone that knows Cohen that’s read it.” A particularly poignant memory comes when Cohen’s brother Mason was born. Cohen went from being nonverbal to speaking his first sentence when his parents, Krystal and his dad, Matt, returned from the hospital: “Look, mom, a baby.”
The poem may be a work in progress, as Krystal says she expects Cohen to add to it each year as he continues to grow and mature, and they are considering possible ways to share it.
Krystal is particularly touched by the public response, which she says has been entirely positive. “It’s amazing how one poem can connect people,” she says. “It’s relatable to any situation. Everybody remembers a time where they were unable to communicate how they felt or they were nervous, and the poem kind of takes you through all that.”
Attention isn’t new for Cohen, as his family’s work advocating for children living with disabilities over the years has led him to receiving keys to both Gonzales and Ascension Parish when he was a preschooler. After Cohen was diagnosed with a mild form of autism, doctors didn’t think he would ever be verbal. Krystal threw herself into research and taking care of Cohen. “I found that there was a big need,” she says. At the time, Louisiana did not officially proclaim April as Autism Awareness Month and very limited resources for parents existed. So, Krystal started locally, asking for and receiving proclamations first from Gonzales Mayor Barney Arceneaux and then from Ascension Parish President Tommy Martinez.
Krystal and Cohen were part of fundraising for Project Kids Kove, which led to the creation of Kids Kove Discovery Park, a playground in Gonzales designed for children of all abilities. Before COVID restrictions set in, Krystal and Cohen also worked for years with the Active for Autism 5K, Fun Walk & Family Fun Fest, run by Families Helping Families of Greater Baton Rouge.
“With COVID restrictions, we miss the volunteer time,” Krystal says. “That was something we did together as a family and definitely special for me and Cohen to do together.”
Videogames are an outlet for Cohen, and he also loves anime, creating memes on TikTok where his account, @official___asta, has more than 30,000 followers. He also loves to perform as a mascot, serving three years as the eagle mascot for Dutchtown Middle and as an octopus at the fun fest. Cohen is a percussionist for Dutchtown Sound at his high school.
Cohen continues to thrive. “For as much as this kid struggles, he has already accomplished so much and has so much to give,” Krystal says.