"Take your metre, your phone. No, you don't have to take your insulin this time," Maureen Topp calls out to the youngest of her four daughters, nine-year-old Cali.
"Sorry – she's just going next door," she adds, mid-conversation about life as a parent of a Type 1 diabetic child.
It's been three years since the Topps learned of Cali's diagnosis – following months of deteriorating health, including an insatiable thirst, increased appetite and eventual lethargy that left the family puzzled and in and out of doctors' offices with Cali, until she was hospitalized with diabetic ketoacidocis.
Over the last three years, the family has worked hard to advocate for the needs of not only Cali, a student at Glenbow Elementary, but of all Type 1 diabetic children.
Last fall, following years of letting writing to the province, Maureen and Cali and representatives from Diabetes Canada took a trip to the Alberta Legislature in Edmonton to speak in favour of gaining a clear standard of care for schools across the province for Type 1 kids due to the unique nature of the life threatening condition.
Maureen and Cali also took part in the making of a Diabetes Canada video: A Day; Diabetes Canada's Video on Kids in School.
"I think the most important message is that currently there are many parents and families across the province are left to solely provide for their child’s medical needs while at school due to lack of support." said Maureen, adding that her family is grateful to Glenbow Elementary for working with them over the years to improve school supports.
"Ultimately, it is up to schools to figure out how to meet student needs during their time at school in collaboration with families if they are to consider themselves inclusive."
Some of the considerations the group brought forward at the legislature included the importance of Individual Care Plans (ICPs), staff training, communication, and safety measures. Recommendations were also made regarding accommodations related to meals and snacks, the impact of glucose levels on cognitive ability, as well as injection and blood glucose monitoring,
And while Education Minister David Eggen announced just last week that new guidelines are now in place for Alberta schools, it is not mandatory for school boards to adopt these guidelines and parents are hopeful there is more to come in terms of policy, while recognizing the announcement as a step in the right direction.
The Cochrane Eagle reached out through social media to connect with families of Type 1 diabetes and the response was overwhelming.
Like many families learning that their child has Type 1 diabetes, the Topps were taken by surprise. After all, diabetes didn't run in their health-conscious family.
They quickly learned that Type 1 is considered an auto-immune disease with potential genetic factors that cause the pancreas to no longer function effectively to produce insulin.
Type 2, on the other hand, is usually onset in adulthood and may be linked to genetics, or lifestyle factors. Type 2 can often be managed through diet, exercise, and medication, while Type 1 diabetes can only be managed with insulin injection or via a diabetic pump.
Thomas
Sue Hammersley was also taken by surprise to learn of her son's diagnosis.
"He was so sick – it came on very suddenly ... all in the span of three days," she said, explaining that when Thomas – now 15 and a student at St. Tim's – became sick it didn't take months, only a matter of a few days where he went from normal behaviours to not eating and drinking water "like it was going out of fashion."
Sue said that as they awaited for bloodwork, she became fearful as her son slept through an entire playdate and it became difficult to keep him awake – not surprising when the family learned Thomas' insulin levels had reached a whopping 77 (normal levels for non-diabetics are in the 4-8 range).
"He just got worse and worse – it was really hard to keep him awake," explained Sue, reflecting on her mother's alarm at how quickly the symptoms of an extreme high came on and how the family had so little time to react to their son, who was dangerously sick.
A school bus driver and mother of three, Sue said she is grateful to work in town and have flexibility in the event of a diabetic emergency for her middle son but she remains concerned over the lack of supports at the school – including general awareness among staff of how to help Thomas, should he be late at self-injecting or forget his insulin at home and not be able to exercise clear judgement.
"(His school) has always been really good with him ... but there's no real place for him to go and inject," she explained, adding that she would like to see sharps disposals in school bathrooms or another safe area in the school that is easy and discreet for students to access.
Dyllahn & Xara
It's only in the last few months that Jirina Baloghova has stopped needing to make daily pre-lunch trips to Holy Spirit School to administer insulin to not one, but two of her children.
Last fall, her Type 1 diabetic children both got onto an insulin pump – a wearable pump that administers insulin, worn three days at a time. While food management and carb counting is critical, the technology cuts down on injections throughout the day.
It was a lifestyle adjustment when the family learned that now-10-year-old son Dyllahn was a Type 1 diabetic in 2011. But learning that seven-year-old daughter Xara was also Type 1 a few years ago has definitely posed its challenges for the family – who regularly test their youngest child, Alex, to ensure he also isn't diabetic.
"It was scary. You feel hopeless because there's nothing you can really do other than manage it," said Jirina, who was triggered to seek medical attention and testing for both her older children upon observing frequent urination – reaching upwards of 20 times in just a couple of hours.
Jirina shared that the big challenge is always needing to pack and plan. Even day trips are challenging and her family hasn't had a vacation in a long time, as the amount of work that has to go into leaving the house for the day is usually daunting.
She added that she is "so grateful" to the support staff at Holy Spirit. While only health care professionals can administer injections, the school has provided support staff to help their students.
"The recently announced Alberta Education guidelines further support what we’re already doing at Holy Spirit School," explained principal Denise Briggs. "Members of our staff are trained to track, monitor and help regulate students’ levels. Our school recognizes and supports a variety of initiatives during the year including National Diabetes Day."
Rocky View Schools also said that the guide reaffirms what they are already doing, with plans to boost health care services in the works.
"Currently we are in the process of hiring licensed practical nurses," explained Angela Spanier, director of communications for RVS. "Once on board, the training and support these staff members will offer schools will be communicated."
Diabetes Guide
The purpose of the guide is to "provide information on how schools and/or school authorities, parents/guardians, healthcare professionals and community service provides can work together to support children and students with Type 1 diabetes in school and during school activities," as well as outlining the roles and responsibilities of all parties, working in conjunction with Alberta Health, Alberta Health Services and Alberta Education.
Some guide highlights include the importance of ICPs for students with Type 1; collaborative planning for student needs (based on developmental ability); and safety and emergency management plans.
While the guide outlines that children/students should take primary responsibility of the management of their medical needs "wherever possible," with supports, care and education at home, it also highlights that the school authority should ensure inclusion of their Type 1 students, as well as "make available the appropriate training for personnel working with a child/student with Type 1 diabetes."
The school principal is identified as having a critical role in ensuring all of the student's needs are met in the school.
Did you know?
Around one in 300 students have type one diabetes or three million Canadians.
According to 2017 stats, around 300,000 Albertans were living with type one diabetes, of which around 2,300 are school-age children
