When the kids are the support system
On a snowy, slick road they gather momentum, accelerating to an imagined line on the pavement. Side by side, as if they can read each other’s thoughts, the 14-year-old twins abruptly stop their forward running propulsion and begin a brisk glide over the fresh layer of snow.
They are like statues, frozen momentarily in a spread-eagle equilibrium, squealing with childlike silliness until friction eventually stops them.
And then they do it again. Andrew Wright- Gourlay is older, born 13 minutes before his sister, Abbigail.
When she loses her balance and falls on the next attempt he is immediately by her side to offer a hand up. The irony is subtle. Usually, the supportive role is reversed.
In ways that are both obvious and subtle and even not fully understood Abbigail is her bother’s caregiver.
Andrew lives with Tourette syndrome and disruptive mood dysregulation disorder. He has poor impulse control. He is susceptible to loud outbursts of foul, angry language and has an intense temper disproportionate to the situation. He has put holes in the walls of their St. Catharines home.
Abbigail loves him. Because in her words: “He’s my brother.”
Across Ontario, some 17 per cent of caregivers are youth between the ages of 15 and 24, according to The Change Foundation. And that doesn’t account for the largely unknown group of children who are younger and also caring for grandparents, parents and siblings at home.
Young caregivers are unresearched and unsupported in Canada, said Christa Haanstra, executive lead of the foundation’s Young Carers project. The foundation is an independent organization that works to promote change in the healthcare system.
“The truth is, in the healthcare system, young carers are virtually invisible,” she said.
While they often fill roles that are beyond what’s expected for their age, their added responsibilities mostly go unnoticed outside of their home unless there’s an astute doctor or curious teacher who delves deeper and asks the right questions, said Michelle Lewis, executive director of The Powerhouse Project, a program that supports young carers and their families in Niagara and Haldimand-Norfolk.
They might be a caregiver to a grandparent with dementia, a parent with a disability, mental illness or terminal disease or a sibling with autism, mood disorder or physical disability.
In Niagara, the Powerhouse Project supports 215 young carers. Its programs range from weekly nights out to give kids a break from responsibilities at home to special events because they often miss out on experiences such as going to a restaurant or spending the day at an amusement park to sessions just for teens.
The impact on young caregivers is clear: they are at higher risk for health concerns such as stress, depression, anxiety and low self-esteem. They report feeling lonely, isolated and have trouble relating to their peers, said Lewis.
“The crisis going on in their home or what their morning looked like before they went to school ... their peers aren’t going to understand what’s going on,” she said.
Not only that, but many young caregivers are afraid to talk about their responsibilities due to stigma, embarrassment, or a fear ( justified or not) that child welfare authorities might visit their home if their secret was out, she said.
“It’s trying to serve a very difficult hidden population of kids who don’t necessarily want to come forward and say I need help,” said Lewis.
And yet, young caregivers report that they don’t want their duties to be taken away. “They just want to be heard and understood,” she said.
More awareness is needed in order to identify young caregivers — at school, during a doctor’s appointment or at a home during a medical visit for their loved one — and then more resources are needed to support them, she said. Schools could offer accommodations such as extended deadlines for assignments and time to work on homework at school. Powerhouse runs programs in four Niagara schools but needs more funds to expand, she said.
Every situation is different. One girl has been attending her father’s medical appointments as his translator since she was nine years old. “It’s having exposure to big words and adult content at a young age,” she said. His legs were amputated due to diabetes and his daughter helps him put on his prosthetic limbs and with other tasks around the house.
Young caregivers often report that at school they are called on to de-escalate a crisis with a sibling or help out when a sibling isn’t responding to teachers, she said.
About half of the kids come from single-parent homes.
If a parent is living with a mental illness, the young person might have to fend for themselves at home by making their own lunch, getting themselves and their siblings up and ready for school in the morning and other tasks.
“There isn’t a capable adult to step in and pick up the slack,” said Lewis. “When a meal needs to be made, a young carer is the person who is the capable one in the home.”
A girl whose mother was dying became the emotional cheerleader of the home. “She was the one keeping it together for everyone else in her home,” said Lewis.
Abbigail is one of Andrew’s best advocates.
She’s the first to stick up for him if he’s teased. She stands in his defence if he’s blamed for something he didn’t do. She carries the weight of worry that his behaviour will result in him being sent home from school.
If he has an outburst in a store because he is over-stimulated by lights, noise and people closing in around him, she hates when people stare. She dislikes the word normal.
Abbi gail hardly ever loses her temp er with Andrew. She knows what will escalate his anger and avoids those situations. She has learned empathy for others with challenges in life.
Sometimes it’s the simple things that make the biggest impact. Andrew doesn’t like being alone in the living room so Abbigail will join him to play video games, even though it’s not an interest of hers. Other times, she will sit next to him, working on her artwork and sketches.
Abbigail had to turn down an opportunity to join an after-school art club because she was needed at home to stay with Andrew. When her high school got wind of her dilemma, a lunch-hour club was started so she could participate.
She is proud of Andrew’s accomplishments. This summer, he operated his own business cutting lawns and gardening. He raked leaves in the fall, and will shovel snow this winter. He has his own business cards.
Her parents, Stephanie and Scott, appreciate her support and acknowledge the sacrifices she makes. Big crowds can trigger Andrew’s anger, so they can’t go to attractions like Ripley’s Aquarium of Canada’s Wonderland together as a family. They spend a lot of time at home, which Abbigail shrugs off as OK.
“You worry about her,” said Stephanie. “How much more grown up and mature she’s had to become.
“I don’t want her to get depressed or feel overwhelmed. It can be very chaotic in this house.”
They support Abbigail’s self-expression (her purple swatch of hair and piercings were mom-approved) so she can be her own person, separate from Andrew. The twins attend Grade 9 at separate high schools. And Abbigail has attended the Powerhouse Project in St. Catharines since she was eight years old. It’s a place where she can talk with other young carers.
“If she didn’t have this, we might be looking at two kids with mental health issues,” said Stephanie.