Whitehorse child with Type 1 diabetes gets educational assistant, but mom frustrated by effort it took

A Whitehorse mother says she's relieved after her five-year-old with Type 1 diabetes was provided an educational assistant to help the child with her health needs at school.

However, Jaime Trainoris still pushing for the Yukon education department to adopt a policy that wouldguaranteeall childrenwith the disease get the support they need without their parents having to advocate for it.

"I'm just taking it day by day and just counting my lucky stars that we did get this [but] this shouldn't be a fight that families have to do," Trainor said in an interview this month.

Trainor's daughter, Sadie Raye, was diagnosed with Type 1 diabetes as a baby and requires careful monitoring and adjusting of her blood sugar and insulin levels, which can include measuring her food down to the gram and manually giving her medication injections. Miscalculations could result in medical emergencies or death.

In anticipation of Sadie Raye starting school this year, Trainor had requested that she be assigned a dedicated educational assistant, citing the complexity of the disease and the impossibility of the five-year-old or a staff member responsible for other children being able to manage it on their own.

While the education department initially said that wouldn't be possible, after "a lot of back-and-forth" over the summer, Trainor said she got confirmation less than a week before school started that there would, in fact, be an educational assistant for Sadie Raye.

That assistant, Trainor said, has been "doing an amazing job" and has been "so dedicated" and "super keen."

"We are so, so, so grateful," Trainor said, adding that she was extra thankful knowing that schools are struggling with staffing.

She added, however, that the back-and-forth and uncertainty could have been avoided if the department had a policy guaranteeing students with Type 1 diabetes an educational assistant, something she and others have been advocating for.

"The amount of stress that [my husband] and I had right up until that final moment was... honestly,it shouldn't have happened that way," Trainor said, adding that the change would eliminate uncertainty and hardship for all families with children impacted by the disease.

Yukon Type 1 Diabetes Support Network president Marney Paradis told CBC News that, by her best guess, there were around 30 children with the disease in the territory's schools.

Her organization, she said, has been asking the education department to adopt the educational assistant policy for nearly seven years now to no avail despite support from families, educators and other health organizations.

"It's almost impossible to get [the department] to be interested in the things that we're trying to accomplish and really, at the end of the day, it's just student safety," she said.

'It's flooring, really, that this is the way it is'

The education department did not provide anyone for an interview. Spokesperson Sophie Best wrote in an email that the department has "advanced work" to support students with Type 1 diabetes, including providing voluntary ongoing training for staff and "exploring the role" of educational assistants. The department is also recruiting for a new Type 1 diabetes support case manager, she said, who will "work directly with students, families, and schools to support the wellbeing and academic success" of students.

"While this work marks important progress, we recognize that continued efforts are essential to fully support the needs of students with Type 1 diabetes at school and school-related activities," Best wrote.

Best did not directly answer a question about whether the department was considering creating a policy that would guarantee students with Type 1 diabetes get educational assistants.

Both Trainor and Paradis said that until such a policy exists, though, families will continue to be plagued by the uncertainty of whether their children with Type 1 diabetes will get the support they need in school and have to rely on individual advocacy.

Trainor said there's no promise Sadie Raye will have an educational assistant next year or in the years to follow.

"It's flooring, really, that this is the way it is. I would love for us to not spend the summer worrying if our daughter's going to have support, but I don't know if that's going to happen," she said.

"This year, I'm just so grateful and I just hope that come May, we can sit with the school and come up with a plan and hopefully the Department of Education will support [that]."

Yukon Morning4:32A Whitehorse 5-year-old with Type 1 diabetes has been provided an education assistant after being previously denied one

Whitehorse mother Jaime Trainor speaks with CBCs Jackie Hong.