Chrystal Venator has many security features around her home: surveillance cameras, special locks on the doors, and a bell on the front door so she knows when it’s in motion.
These safety features are not to keep strangers out. They are to keep her son in.
Eleven-year-old Stalen is autistic and non-speaking and could wander without warning from supervised care. This would effectively put him in danger, since he has “no sense of safety,” Venator said.
“I don’t think people realize how quickly something can happen,” she said. “It doesn’t take 30 minutes. It’s a matter of going to the washroom, opening the door to let the dog out, answering the front door while he’s figured out the lock at the back door.
“We don’t know that he has figured it out until he has figured it out, and he is on the run.”
It is a constant fear for Venator and why the death of Parker Wells, an autistic and non-verbal boy in Calgary, resonated so deeply with her.
Eleven-year-old Parker disappeared from his day home on July 16. Trained searchers, police officers and volunteers spent almost two weeks looking for him before police found his remains.
Following the death of an 11-year-old autistic boy in Calgary, parents in New Brunswick would like more planning for vulnerable people who wander away. The province says there are some alert protocols in place, but it is always open to new ideas.
“This could be my child, this could be my family,” Venator said. “It’s very emotional, but it’s also terrifying because we live with this challenge every day.”
Days after the tragedy, Venator joined the Indigo Alert Initiative, a national campaign launched as a result of Parker’s death.
The initiative proposes a public emergency system that would be similar to Amber Alert but set in motion when a vulnerable person is missing and an abduction is not involved.
Quick response critical, mother says
“We realized there is a huge gap, and not just for the autistic community, but dementia, Alzheimer’s and those who communicate differently, those with other cognitive conditions and impairments,” Venator said.
When someone is missing or wanders away, time is critical, she said.
The petition for an Indigo Alert has more than 38,000 signatures from across the country and has gathered letters of support from political leaders.
Jennifer Ball, the national director and founder of Indigo Alert Canada, said the team is continuing to grow in Eastern Canada and has reached out to the New Brunswick government.
“We’re definitely making headway and emailing every MLA, MPP known to man.”
Provincial government spokesperson Bruce Macfarlane said New Brunswick has a “robust” alert system that includes Amber Alert and Alert Ready, and police let the public know when a vulnerable person is missing. He also said the government is willing to listen to new ideas.
According to Ball, emergency alerts are handled provincially but to change or introduce a new alert requires federal initiative.
Venator isn’t the only parent driven to seek change.
Breanna Mazerolle has an eight-year-old autistic son who wanders. Years ago, she noticed a gap in an emergency response for vulnerable children who go missing.
News of Parker’s disappearance was the definitive push she needed to launch Every Minute Matters to press for better local emergency preparedness in cases of vulnerable people wandering.
“My concern is that if we have an alert system, but we still don’t have the proper training or we have things that don’t work as far as the community goes, then [the search] may not have all the results we’re looking for,” Mazerolle said.
“Preparation saves time and time saves lives, and the first few minutes of a vulnerable child going missing is the most important.”
She is distributing community consultation forms to caregivers, first responders and service professionals to map out local safety needs.
Wandering puts kids at risk of drowning
A 2012 U.S. study found that nearly half of children with autism will try to wander, or leave a safe environment.
According to a 2017 U.S. study, children with autism face a drowning risk 160 times greater than the general pediatric population, and wandering is the primary precursor in nearly 74 per cent of such incidents.
There is currently no available data on vulnerable children who wander in New Brunswick.
Autism Alliance of Canada said there is a significant gap in available national data on wandering among autistic children in the country.
A partial solution
For Venator, a 24-hour tracking bracelet worn by her son gives her more peace of mind. This device is part of Project Lifesaver, a tool of York Sunbury Search and Rescue that uses radio frequency transmitters to quickly locate users.
“The average search time with the system is 30 minutes, whereas in traditional searches they can last hours and days,” said Shantelle Leslie, search manager and chair of Project Lifesaver. “This program doesn’t stop a child from eloping, but if they do elope, we can find them quickly.”
“The peace [of mind] it gives the caregivers is fundamental,” Leslie said.
Project Lifesaver also operates in various stages of development in Saint John and Miramichi.
But wearable devices don’t work for everyone, especially for people, like Mazerolle’s son, who have sensory sensitivities.
“Not everyone can wear them, not everyone has the ability to access them,” Venator said. “A-one-size-fits-all approach does not work.”
Better education
Beyond tracking devices and emergency alerts, advocates emphasize that public education is critical.
Jason Lai, executive director at the Autism Alliance of Canada, encourages policymakers to listen to these community-led efforts.
“All these ideas percolate up into a federal framework that can really provide safety, inclusion, public understanding, coordination,” he said. “All these pieces that [can be] informed by evidence and informed by the community.”
With many federal politicians back in their home ridings for the summer, he urges advocates to make their voices heard.
“That’s when real political change can happen,” he said.
