Chris MacPhail of Canoe Cove, P.E.I., never goes out with her daughter unless she is wearing sneakers — that’s in case she needs to quickly run after her.
MacPhail’s daughter is 16. She has Down syndrome and ADHD. And one of her consistent behaviours since she was a young child has been running away. (CBC News has agreed not to name her, for safety reasons.)
“As soon as she was able to run, that was it,” MacPhail said.
She once escaped from daycare when she was little; staff found her outside trying to chat with an elderly woman, MacPhail recounts. “No doubt she was trying to snag a ride!”
Later, when the daycare moved, MacPhail said staff invited her daughter inside first and followed her around, so that they could see where they needed to secure potential escape routes.
“There’s never a point where she doesn’t have somebody with her, because they know she tends to take off,” MacPhail said.
“There’s little tells that she has — she’ll look sideways to see where you’re at before she takes off, just to see if she can get far.”
The challenge and some resources
Running behaviour like this — also called wandering, bolting or eloping — is not uncommon in those diagnosed with Down syndrome, intellectual disability and ADHD, and is common in as many as half of those with autism spectrum disorders, according to the Centers for Disease Control and Prevention.
Katie McNally, the co-director of the P.E.I. Down Syndrome Society, says her daughter is a flight risk too. So is the child of Tammy Ferguson, of Project Lifesaver P.E.I.
P.E.I. children with disabilities are assessed by the province and a budget is assigned for special supplies they need. MacPhail uses that money for an after-school program her daughter enjoys. Other families, like McNally’s, spend the money on respite care workers who will come to their homes.
There are other resources too. Project Lifesaver bracelets are equipped with a GPS that can track missing children if needed. MacPhail and McNally have each procured one for their daughters. They are among 31 clients on P.E.I., mostly children with autism who wander.
They tend to bolt from a safe place to get something they want — or visit a favourite place. They may also leave a safe place if they are feeling overwhelmed by noise or other disruption, says Ferguson.
The P.E.I. Down Syndrome Society has an average of three gatherings a year. It has organized a private Facebook group MacPhail is part of where they share experiences and knowledge, and has put together information and welcome baskets for new parents of Down syndrome babies.
Constant vigilance needed
Intellectually, MacPhail’s daughter is about five years old and is considered non-verbal, although her mother noted: “I can understand her, and those who work with her can understand some.”
At home, MacPhail said she is in a constant state of vigilance when her daughter is with her.
“That’s always on the forefront of my mind — if she’s too quiet, ‘OK, where is she and what is she doing?'”
There are three locks on the exterior doors — MacPhail adds a new one every time her daughter figures out how to open the last one.
“The option is to lock up her room, and I don’t feel comfortable with that,” she said.
Even at night, MacPhail said she sleeps lightly, because her daughter will often get up to wander through the house. The teenager has developed a fascination with cooking, so MacPhail removes the knobs from the stove when it’s not in use.
Her daughter’s father, Brian Cameron, says he has only single locks on the doors at his house, and his daughter stays away from the stove when she is there. But he does note: “She is a very independent kid.”
‘It was pretty scary’
MacPhail recounts the most frightening time her daughter ran away.
A couple of years ago, she was staying at her father’s house in Cornwall but escaped in the middle of the night out a patio door, wearing just her pyjamas. (The teen’s father said he now blocks her access to that patio door.) She walked about a kilometre to a nearby Tim Hortons coffee shop, where she was found.
MacPhail received a phone call at 5 a.m. from RCMP officers, asking her to come get her daughter.
“It was pretty scary for me,” she said.
That’s when she arranged for her child to have a Project Lifesaver bracelet, which she said offers her huge peace of mind.
Watchful days, short nights
The family’s days can be long. Despite MacPhail’s best efforts, her daughter often doesn’t fall asleep until about midnight, and then wakes early in the mornings.
The COVID-19 pandemic made those long days even longer. MacPhail’s daughter was used to the routine of school (she attends Bluefield High School) and couldn’t understand why she wasn’t able to go to class from mid-March onward.
MacPhail repeatedly told her daughter that the school was closed, and everyone had to say home to be safe. MacPhail said her daughter then took the message very much to heart and refused to go to her father’s house as set out in their custody agreement, two evenings a week and every second weekend.
That meant during the pandemic lockdown, when schools and businesses were closed, MacPhail had almost no respite. Even though her parents live on one side of her house and her brother on the other side, MacPhail said she decided to limit in-person contact with her family because her daughter lives with compromised immunity.
“It was trying to deal with the meltdowns, when she realized that she can’t do something — she couldn’t even go see her grandparents,” MacPhail said.
The province did set up a respite program during the lockdown that allowed caregivers to drop off their children at some schools for a few hours a week, but MacPhail said her daughter didn’t want to go. By the time they got ready and MacPhail had coaxed her daughter in and then out of the car, the break was almost over.
Since the lockdown ended in mid-summer, MacPhail has convinced her daughter to go back to regular visits with her father. And of course, she is back in school.
Tantrums now harder to handle
At school, MacPhail’s daughter always has somebody with her — one educational assistant in the morning and another in the afternoon. Although her daughter is friendly and happy, her mother said she is a handful.
There’s no reason behind the running, MacPhail said, unless there is food or babies involved — she loves both and will run toward them.
When her daughter’s plans for a getaway are foiled, MacPhail said, “we get the temper tantrums — which you know, were doable when she was younger. I’d have to pick her up and take her to a place where she could express herself safely.”
She adds: “She’s blown my shoulder out a few times,” in attempts to flop down in protest.
When things aren’t going her way at school, MacPhail said her daughter will go to the bathroom and wrap herself around a toilet until staff phone MacPhail to come get her.
Difficult to get and keep work
MacPhail said having to be available at the drop of a hat has narrowed her job prospects.
You’ll find that most parents with special needs children, they work hard. Just predominantly on their child.—Chris MacPhail
“I don’t know of many places that would accept the fact that I have to leave as soon as I get a phone call,” she said.
In the past she has worked as a consultant and as a realtor, but said work is scarce.
Governments need to be more aware of parents like her, who need extra help because they are parenting special-needs children, MacPhail said — more programming that would give employment support or guidance, for instance.
“You’ll find that most parents with special needs children, they work hard. Just predominantly on their child.”
“This is an issue for many parents.” agreed Katie McNally with the Down Syndrome Society. “My husband and I are very fortunate; our employers are very flexible.”
‘Definitely a blessing’
MacPhail hasn’t thought much about what’s in their future, she said.
“You learn to be fluid whenever you have a child that runs,” she said. “It’s just one of those things.”
But she said she wouldn’t change a thing.
She added that even though she studied psychology in university, “that child has taught me more than any book.
“She’s definitely a blessing.”