You could chalk it up to a mother’s intuition. It’s hard to explain but Jamie Pope always knew her son Jackson had autism.
From the time he was born, Jackson Pentland —now age three — wouldn’t sleep, needed to be constantly held, wouldn’t settle and couldn’t be entertained. Jamie had to sleep sitting up and she kept telling doctors she knew something was wrong with her baby.
“I think that I actually knew before he was born. I can’t explain it and maybe it sounds crazy, but I just knew,” she said.
He was almost 18 months old but didn’t understand words like ball. Jackson wouldn’t turn his head when his name was called, Jamie recalls, and the only time he was content was when he was eating. The unrelenting emotional and physical strain on Jamie, who is also a very busy owner of four Tim Horton’s stores in Winnipeg, was draining.
“It was so frustrating because I knew this wasn’t how it is for most other people. He was meeting physical developmental milestones and running around by nine months. They (doctors) said he’s a boy, and boys are different,” she said.
As worried parents do, Jamie did a lot of reading about autism and became aware that early intervention is the best predictor of long-term positive outcomes, so she advocated for a diagnosis when Jackson was under a year old and pushed the system to respond when projected wait times were long and lagging. She calls herself “the squeaky wheel”.
Jackson was referred to SCCY (Specialized Services for Children and Youth) Centre, and within a half-hour of testing, the doctor gave Jamie the answer she was waiting to hear.
“I thought, yes, thank you! In a way, it was really nice to know for sure because as a new mom, you do wonder sometimes if maybe you just suck at it.”
While on the wait list at St.Amant, Jamie and her husband Ian Pentland brought private services with a consultant who came into their home to work with Jackson for an hour a month, to teach them how to do the tutoring. Then, Jamie and Ian worked with Jackson on their own for about 20 hours a week at home.
By the summer of 2018, St.Amant’s services changed and children were being moved into one of the four St.Amant autism schools in the community.
Jamie was adamant that Jackson wouldn’t handle the change from home to school well. Ian had quit his job and planned to stay home with Jackson.
“I was so upset that I refused to visit the school. I thought there’s no way he can handle school…he’s not even five. I was totally against it but Ian went with his mother to check it out. And they actually called me from there; telling me it was awesome and the right place for Jackson to be.”
Jackson started school last September. By Christmas, his strides surpassed his parents’ hopes. Within days he could sit at a table and focus on tasks such as matching and sorting items. Before starting school, Jackson hated going outside. Now, he loves it.
Jackson can now recognize also his own name, and will hold his mother’s hand when asked.
Jamie recalled that when Ian and his mother visited Minnetonka school, a couple of children approached them and one of the preschoolers was using an iPad to communicate.
The boy pressed “Hi” on the iPad and staff explained that the applied behaviour analysis (ABA) program was helping some nonverbal children learn to communicate electronically.
Because Jackson is also non-verbal, the idea of an iPad brought hope and excitement.
The generosity of donors who support St.Amant Foundation make tools like iPads and other developmental toys available to autism classrooms. These tools are considered extras and are not funded by government programs. While schools wait for donations, children wait for iPads. Jackson’s parents were fortunate enough to afford their own, but this is not the case for all families.
Jackson’s iPad now makes it possible for him to pick out what he wants from the pantry at home. He points to pictures that his parents programmed into the tool, including his absolute favourite treat: Aero candy bars.
Recently, Jamie and Ian set toilet training and sign language as Jackson’s next goals to learn at school and at home. Jamie is confident he’ll be ready for kindergarten, which requires that all children be toilet trained upon enrolment.
“I will send him to school. He’s very social. He wasn’t always, but now he loves other kids.”
Jamie also benefits from being part of a community with other St.Amant parents.
“The best advice I got from a parent of an older child is to make him do things for himself, and to assume competence. We’ve stopped doing everything for him like we used to do and we’re seeing that he can do a lot more on his own than we thought.”
Jamie has heard the criticism that ABA programs are too structured and rigorous, but this hasn’t been Jackson’s experience.
“It’s an awesome place and they try to make the work as fun as possible. They have every type of toy and game you can imagine. The program is whatever is working for your child, your goals, and what you want to teach them…I think they feel that if the kids aren’t having fun doing it, they’re not doing their job.”
Thank you for the generosity you have shared with St.Amant Foundation. Because of you, together we can continue to help more children like Jackson reach higher and go farther.
Will you consider making a donation today? There are many convenient ways to give. Click here to donate or call Noreen Fehr at 204-258-7073.
Left to right: Teya Pentland, Mason Pentland, Ian Pentland, Jamie Pope and Jackson Pentland