Ben Gapinski eats cucumbers…but only at his friend’s house. He’s been in Cub Scouts since first grade, and someday, he wants to become an Eagle Scout. In a lot of ways, Ben sounds like your typical 10-year-old. But his mother, Nancy, admits the road has not been easy for her son or for those who love him.
“Ben is our first child. At age two, Ben wasn’t talking. We brought him into the doctor for his checkup and she explained that children start talking at different times, so we should just wait and see. After another two or three months, he still wasn’t speaking…even words like ‘mama.’ He was just in his own world in a way,” Nancy remembers. “Our daughter Zoe was born 16 months after Ben and she responded to things he didn’t and made eye contact. We wondered, ‘what’s going on here?’ My husband and I asked our family doctor for a referral for Ben for Early Intervention. I knew about St. Francis Children’s Center from going to the Wine, Beer and Chocolate Tasting event a few years before with a friend.”
Ben was found eligible for Early Intervention/ Birth to Three Services due to a speech delay and eventually therapy and special education were provided in one of St. Francis Children’s Center’s early childhood classrooms.
“We liked the idea of Ben being with other children his age with and without disabilities,” Nancy recalled. “An occupational therapist started addressing sensory concerns with him, and he responded really well which lead us to seek further testing.”
After meeting with a neurologist and a psychologist, Nancy and her husband were told that Ben was on the Autism spectrum, a diagnosis hard to take for any parent. Soon afterwards, Nancy remembers attending a friend’s wedding. At the reception, they showed a video montage about the bride and groom throughout their lives, and Nancy was overcome with emotion. “They had all these pictures of his [the groom’s] life…from when he played baseball as a kid to when he was in college and then fell in love. I went into the bathroom and cried because I worried that Ben would not have a scrapbook like this of life experiences. I look back now and I wish I could tell my younger self that it was going to be okay, that Ben would have a life full of great experiences.”
When Ben aged out of the Birth to Three program, he began receiving services from the Glendale River Hills School District. In the meantime, the Gapinskis pursued coverage for intensive autism treatment services through insurance from work and through the Children’s Long-Term Support Medicaid Waiver (which covered these services at the time rather than through the Medicaid card.) “We wanted St. Francis Children’s Center to provide case management because we felt their oversight would help us to continue the positive course that we were on.” Ben received Applied Behavior Analysis (ABA) therapy in his home and out in the community. Nancy shared, “The therapy Ben received really helped him with his communication skills, and his team made the experience as fun as possible. He started talking more and responding to his own name. His team worked with him on play skills and safety skills such as staying with your parent when you cross the street or inside a store, because sometimes he would just take off, and it was so scary.”
Today, Ben isn’t afraid to speak up for himself. Ben continues to receive special education services, almost entirely within the regular education classroom with his friends at Glen Hills Middle School. Ben benefits from support with social situations and to be sure his sensory needs are met. According to Nancy, he’s doing well in school academically, and if he needs help, he asks for it, often times from friends. He plays Bass in the school orchestra, eats lunch with his friends in the cafeteria, stays after school two days a week for computer club and is active in Cub Scouts. “Now he lets us know what he wants to do. He’s proud of himself when he’s more independent and able to do things on his own. It’s a big deal to him to be ten years old!”
His parents are also proud of the progress Ben has made and are grateful for the support he received from SFCC. As far as Ben having a video montage someday at his wedding, this may still not be in the cards, but for a very different reason now. Nancy explained with a smile, “Ben tells us that he does ‘not want to get married, because it is gross!’”
By Melanie Reach and Tara Clark