Not only has this "happy, stubborn man," as his dad describes him, lived beyond the age doctors predicted when he was diagnosed with cerebral palsy, but a residential farm-based facility in upstate New York gives him real purpose.
Never one to sit on the sidelines, Sam McCarthy danced with his younger sister Elizabeth at her wedding in December.
At 35, Sam McCarthy leads an active, social, and purposeful life. His father, Stephen McCarthy, describes him as an independent, stubborn, and happy man who is driven every day to make something happen—qualities that would make any father proud, and especially a father who was told his son would not live past age 30.
Born 12 weeks premature and weighing less than 4 pounds, Sam spent his first three months in the neonatal intensive care unit, where his young parents were told very little about his condition. "The head of neonatology said, 'You'll be back, and expect a lot of problems,'" McCarthy recalls. "But we took him home thinking he was normal."
When Sam reached 6 months old, his pediatrician suggested he see a physiologist at Montefiore Hospital. “We learned later that he suspected cerebral palsy, but he felt he didn’t have the right to tell us that. So we had to hear it from a stranger,” says McCarthy, who lived on Long Island at the time and now lives in Bronxville. “We had no idea what it meant.”
The couple was already pregnant with their second child, and McCarthy says he and his wife were in complete denial about the diagnosis but dove into early intervention services for Sam with great energy. “It started with therapists and we even brought in Feldenkrais,” he says. “We did anything possible.”
Multiple tests have shown that Sam’s mental ability is on the low end of normal, but he's never developed the ability to talk, walk, or even sit up on his own.
"I thought, 'What are we going to do with this poor vegetable?'" McCarthy recalls.
Discovering a New Life
Sam was 13, living at home and attending BOCES, when his school district suggested that his parents consider placement. "I was against it at first," McCarthy says. "But he was going to BOCES and fighting everything, then getting home and lying on the floor and that was his day. That was not a life."
Through the school district, the McCarthys found Sullivan Diagnostic Treatment Center (which has since been renamed The Center for Discovery) in Harris, which they knew right away was a good fit for Sam. There, Sam got a motorized wheelchair that he controls with his foot. The center is a farming concept facility that raises animals and grows its own food, and each of the center's 125 residents have farm-related responsibilities. Sam's first responsibility, McCarthy says, was to help bring in the sheep from the field. "They tied the sheep to his wheelchair and he brought them to the pen," McCarthy says. "Now he had a purpose in life. He became part of a community of people like himself, and he became a whole different person. He's done things we thought we'd never see him do, including skiing and kayaking and horseback riding. He has constant accomplishments in his life that make him very happy.
"I never expected him to live on his own, to have friends and go to the movies. When you have a disabled child, it’s hard to let go, but you have to. He's really found his own life."
Sam is one of the more positive residents, McCarthy says, and even comforts others when they’re feeling low. He inspires his father, too: McCarthy recently broke his wrist and Sam’s challenges helped him put the injury in perspective. "I was feeling pretty sorry for myself, and then I thought, 'I have one lousy broken hand, but Sam’s got a whole body that doesn’t work,'" he says. "He's accepted what he has and has grown with it. He’s become a real adult male with a purpose in life and finds joy every day. It's a miracle. He wakes up each day determined and ready to go."
What I Wish I Knew
One thing he learned early on about raising a child with disabilities, Stephen McCarthy says, is that it takes a lot of patience. Here, a few pieces of wisdom he offers to parents who are just beginning their journey with a child who has special needs.
Lean on others. "One thing I didn’t do well was ask for help," McCarthy says. His advice? "Join parenting groups."
Be involved. "Get involved with your child’s school or facility. You are their advocate—stand up for them, because they cannot."
Don’t be afraid to ask questions. "Question why something is occurring. Ask: 'Why is this necessary?' and ‘What are our options?'"
Accept your feelings. "Remember it's all right to feel sad and to feel alone—it's not easy, but most people do not see that part. All the love you give comes back a hundred-fold with a smile, an accomplishment, or just peace of mind."