MOUNT VERNON — Jocelyn Gilardi loves baking. In her mind, if you’re not getting messy while baking, you’re not doing it right.
She bakes cookies, tying her blondish hair into a knot while making her famous ‘monster cookies’ consisting of too many toppings to count, filled into tins for others to enjoy.
Gilardi and her mother have made cookies every Christmas, and her love for the craft has grown as she matured. It coincides with her favorite holiday — Christmas. The winter, snow-filled holiday is when Gilardi spends precious time with her family, especially her nieces and nephews.
When Gilardi is looking at a baking recipe, she uses her closed-circuit TV (CCTV), a magnified screen that enlarges words for her to read clearly. Other times she’ll use magnifying strips to help identify words.
Gilardi has Usher syndrome, a disability which lowers visibility, hearing also effects balance. This has been Gilardi’s ‘normal’ since she was born, where vision is similar to looking through a straw.
People who have Usher syndrome are born with it, but typically are diagnosed as children or teenagers. There’s no cure for Usher syndrome, but treatments can help people manage their vision, hearing, and balance problems, according to the National Eye Institute.
Usher Syndrome affects approximately 3 to 1- in 100,000 people worldwide.
When growing up, Gilardi read with an enlarged piece of paper, not her CCTV that she uses today. Now, Gilardi owns her own home, which she sees as a big accomplishment, and carries a multitude of responsibilities.
The technology including a Bluetooth door lock, her magnifying equipment, a smart home thermostat and much more.
“I didn’t have this technology when I was growing up,” Gilardi said. “I wish I did. I grew up with speech therapy because I couldn’t talk right and couldn’t hear.”
Technology not only gives her independence, but is a tool for Gilardi’s day-to-day life.
“Going to the grocery store isn’t an easy task for me because of the size of the price tags,” she notes.
When Gilardi received her CCTV, reading romance and nonfictions books, her favorite genre, became much easier.
Gilardi began working at Lanning’s Food in 2005, where she orders bulk candy for the local grocery store, she said.
Gilardi also works at Mount Vernon St. Vincent as a teaching assistant. She has an associate’s degree in early childhood education and began at St. Vincent by leading a classroom of preschoolers.
“I like the fact the kids can talk freely while we color pictures,” Gilardi said. “They talk about what they like to do at home.
“I love it when I read to them.”
Social media helped Gilardi find others with her condition. She’s a fan of a yearly conference that includes a discussion of Ushers Syndrome.
“I see myself as a leader,” Gilardi said with a smile on her face.
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