This is what 6-year-old Sam does best. It’s such a simple act, but for his parents, Lucy and Troy, it’s an act that means so much. It’s hard to believe, that just a few years ago, smiling was out of the question for Sam.
Sam was born with an extremely rare chromosome deletion, so rare that only a handful of other cases are known worldwide.
Lucy recalls that within the first month of Sam’s birth, she noticed something wasn’t quite right. As months progressed, her and Troy’s suspicions proved correct. Sam never smiled and his eyes didn’t track movement. While other children began sitting and crawling, Sam did not. After being taken to multiple doctors and specialists of all kinds, his diagnosis was finally revealed after six tolling months. While Sam’s parents were devastated, they were glad to at least have an answer.
“It’s a mourning process, the emotions that you go through, because you’re mourning the loss of your dreams, especially with your first child,” Troy said. “Your dreams as a new parent are all the things you’re going to be doing like baseball and camping. It’s literally mourning the loss of all those things.”
However, when Troy and Lucy brought Sam to United Way supported United Services for Children, things began to look up. The staff saw a child, not a diagnosis.
“When he first came to United Services, he wasn’t walking, he was running constantly. He was unaware of people around him and would get preoccupied with objects,” said Kate Becker, Sam’s Early Childhood Special Educator. “It seemed like he had an itch in his brain he just couldn’t scratch.”
Among all the children Kate has taught, she says Sam has left the biggest impression on her both professionally and personally.
“He made me a better teacher,” she recalls.
Working with Sam wasn’t an easy feat, but as Troy said, “United Services never gave up.”
Since Sam’s challenges were extremely unique, United Services staff had to think out of the box to find solutions to fit all his needs. Sam’s compulsive traits interfered with his ability to learn, but through occupational and physical therapy that incorporated the use of sign language and physical prompts, Sam’s teachers learned how to turn these into motivators instead of challenges. Through determination and hard work, they were able to figure out how to capture Sam’s attention, keep him focused and help him learn.
By the time Sam graduated United Services, Kate had seen great progress in him. Not only had she helped to improve Sam’s walking and standing, she also helped him learn how to handle various experiences and social interaction. He was playing with toys, socializing with peers and learning to feed himself.
“When Sam took a lick of his first popsicle, we all cried. The first time he clapped his hands out of excitement, we all cried again,” Kate said. “To see him do activities of typically developing children and to know that you’ve changed his quality of life — it takes your breath away.”
United Way’s support of United Services helps fill the financial gap, allowing children of all abilities to reach their full potential through on-site programs including occupational, physical and speech therapy. It’s through these programs children are given the necessary tools for a brighter future. This overall level of support is vitally important, especially to parents like Lucy and Troy.
“We [Troy and I] want to do everything we can to help Sam live the best life possible,” Lucy said.
And the same stands true for their daughter Charlotte. In fact, when it came time to enroll Charlotte in preschool, Lucy and Troy didn’t hesitate to bring her to United Services. Despite the fact that she was a typically developing child, they wanted her to be exposed and have the chance to interact with children of all abilities and needs.
“It just seemed natural for Charlotte to come here,” Lucy said.
While Charlotte attends preschool at United Services today, Sam is utilizing the skills United Services instilled in him in kindergarten in the Fort Zumwalt School District. After seeing Sam’s amazing progress and being a part of it, Kate couldn’t be more proud.
“It really makes you feel good about what you’re doing,” Kate said. “If he’s making his biggest strides now, I can’t even imagine what that will mean for the future.”
Photo credit: United Services for Children
About United Services for Children
United Services creates an inclusive educational environment that values children of all abilities in partnership with our community. United Services has been a United Way funded agency since 1979.