In many ways Sam Newton is a typical 12-year-old boy. He enjoys school – especially History class, but he would much rather hang out with his best friend Nial playing video games in their “man cave.” He loves swimming with the Whalers swim club and camping with his Boy Scout troupe. He takes care of his two pet cats, Tig and Socks. He loves his parents, Ian and Brenda and his sister Kylie.
But in other ways, Sam is atypical. One of his favourite activities is drawing maps. He’s already seen quite a bit of the world: Hawaii, the Caribbean, Alaska and Disneyland. When asked what he wants to be when he grows up, his answer isn’t “fireman” or “hockey player” it’s “inventor”. He already has a theory about making teleportation a reality. And while his family make-up sounds typical it is also unique. That’s because Sam’s sister Kylie lives with disabilities.
“I don’t have any friends who have a sibling that’s like Kylie,” he says.
Sam says this with some sadness. When he was first told that he was going to have a sister, he was very excited because he thought he was going to have a playmate. That’s what his parents thought too but when Kylie was still a baby, it became clear that she wasn’t developing as they had expected. Kylie lives with Global Developmental Delay: she is tube-fed, non-verbal and moves about in a wheelchair or with a walker. She has made progress beyond what her doctors expected but Kylie will never be the playmate that Sam imagined.
Instead, Sam says he’s had to adapt to a different way of living. He has learned to feed his sister through her g-tube (a tube inserted into Kylie’s abdomen that delivers nutrition directly to her stomach.) He tries to be a help to his parents and says he’s always ready to work and help out. Brenda says he’s often the only one who can calm Kylie down when she gets agitated.
“I look her in the eyes and talk calmly,” Sam says. “I can sort of feel what she is thinking.”
His parents say he’s very patient and understanding, even when Kylie’s health has impacted his own experiences – like the time Brenda couldn’t go on a field trip with Sam because Kylie had a serious medical emergency. Sam shrugs and says “it’s all part of learning to adapt”.
Ian and Brenda try hard to balance their time between their two children and talk about “Sam days.” One of the resources that makes this possible is Matthew’s House: a respite care home supporting families with children who live with complex care needs. When Kylie is able to spend time at Matthew’s House, Sam gets to spend more time with his parents. He’s noticed how different it is when Kylie is away.
“It’s a lot quieter without her and my parents are a lot more relaxed,” he reflects. “I get more of their attention and sometimes it’s good to do ‘nothing’ together like watch movies. Sometimes we go for sushi.”
As Sam thinks about the future, his thoughts turn to travel. He’d love to combine his love of history and maps with a trip to Europe.
“That’s my dream trip,” he says. “It would be so cool.”