‘I see that there is a lack of support’

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Update: A previous version of this story stated the Ljilja family was banned from the Explorer Hotel after going there to play. Hotel management reached out to Yellowknifer and explained that any unauthorized visitors are prohibited from entering hotel rooms and other private areas of the building. Guests with autism and guardians of people with autism are welcome at the hotel. Yellowknifer apologizes for any confusion or embarrassment that might have been caused by this portion of the story. 

Tonkica Ljilja’s eight-year-old son Adrian is already running into limitations in autism support.

When the family first moved here from Croatia in 2013, Adrian wasn’t diagnosed, but his mother suspected he had some sort of developmental delay.

Photo courtesy of Toni Ljilja. Adrian and his autism assistance dog guide, Greer.

Confirmation came in Edmonton in 2014, and Adrian was able to get some support in his early childhood through the NWT Disabilities Council.

“They’re really doing an excellent job and they did a lot for us over these past five years, but they don’t have funding, that’s the problem,” said Ljilja.

Often, she would ask the organization for help but couldn’t get it due to understaffing due a lack of funding.

“For instance, Adrian really loves to go to summer camps and the problem is they don’t give us more than three weeks per year of one-to-one aid from the NWT Disabilities Council,” said Ljilja.

The city recently withdrew $25,000 in funding from the NWT Disabilities Council’s Experience Summer program, which provides individualized support so children like Adrian can attend summer camps. In the summer, when there’s no school for nine weeks, it’s difficult to arrange care for him.

“It’s hard for Adrian to stay in the day home for the rest of the summer and he’s struggling there,” Ljilja explained.

When she asked for some additional support, she was met with the same response as the last five summers. She even reached out to former mayor Mark Heyck to ask what could be done.

“There are lots of kids with special needs here in Yellowknife and we only get a maximum of three weeks of support per summer. All these kids deserve to have some kind of fun and this is the only time that they can be out – the rest of the year is so cold,” she said.

Heyck told her to contact the city’s day camp, she recalled. Day camp staff told her they’d never had a child with special needs and weren’t trained to deal with one, but that they’d be willing to try, she said.

“They had some issues. They didn’t know how to react, but then the disabilities council support workers came and helped them,” she said. “Even though they didn’t have anything to do with that, they saw they were struggling with Adrian.”

The support workers gave the camp counsellors pointers like how to talk to Adrian, what to do in certain circumstances and were really helpful overall, Ljilja said. They were able to get an additional one week of support, marking the first time in the last five years her son has received more than three weeks of support.

Everywhere else they turn, they are met with the response that there’s no support for special needs children, she said. They’ve had no luck securing one-to-one support for activities like swimming and gymnastics.

“In my experience with my child, I see that there is a lack of support,” said Ljilja.

Weledeh Catholic School has been the exception.

“Weledeh has been so good to us,” she said. “He has excellent teachers.”

Adrian has been at Weledeh since he was four, and has a classroom assistant to help him with everyday tasks.

“All those things that we consider normal and easy for us, for Adrian can be really hard,” said Ljilja.

The school even connected her with a behavioural specialist. But the waiting lists for services like speech therapy and occupational therapy are long and can be difficult to access.

Adrian went without speech therapy for nearly the whole school year. After 10 weeks of trying, she got a hold of a speech therapist to come see him, but only for 45 minutes. Adrian only started talking at age five or six but still needs regular speech therapy, she said.

“I think they really need to work on those kinds of supports for kids because he is verbal but he still needs a lot of help with communication,” said Ljilja.

The only private speech therapist in the city is too busy to take on Adrian until April.

“At this point, he doesn’t have any speech or occupational therapy and he needs both of those. And that’s just really sad,” she said. “And I believe it’s not just us. There are lots of other kids with autism that don’t have enough support or any support in those areas.”

The family has even considered moving to Alberta due to the lack of support here.

“It’s hard,” said Ljilja.

“Hopefully, I’m going to try and push more because it’s not just about Adrian,” said Ljilja. “In general, all the kids with special needs, they deserve to have more support.”

Relying on Jordan’s Principle

Renee Sanderson lives in Yellowknife and has two boys aged four and seven who both have autism.

She had to travel 1,500 km south to the Glenrose Rehabilitation Hospital’s Autism Clinic in Edmonton, just to get her sons diagnosed.

“And even that could be a six month or year wait just to get down there for it,” she said. “They always say early detection is best.”

But without an autism diagnosis, it can be impossible to obtain any sort of assistance.

Sanderson has been able to access some help through Jordan’s Principle, a $382.5 million fund available to First Nations families to cover services, including speech therapy, schooling supports and mental health services.

Sanderson is from Fort Smith and said Yellowknife is probably the best place to be, but that doesn’t mean it’s been easy.

“It’s been very hard to access anything, we’re very limited in services we do get,” she said.