Mother fights for school bus stop for 4-year-old with arthritis

Jennifer Comeau is pleading for help to get aschool bus to stop in front of her house in Miramichi next week when school starts.

Comeau's daughter Claire is four years old and going into kindergarten. She has juvenile psoriatic arthritis,characterized by the skin condition psoriasis and joint inflammation.

Claire is in medicated remission, said Comeau, meaning her medications keep her arthritis symptoms at bay. But her symptoms can still flare up, especially in the cold weather, which is why Comeau wants her little girlto be able to wait in their mudroom until the bus arrivesto avoid going to school in pain.

According to the Arthritis Society Canada website, changes in weather may cause an increasein joint pain. The website says research showsas cartilage wears away because ofarthritis, the bone nerves maybecome sensitive to changes in barometric pressure.

Comeau said the New Brunswick Department of Transportation and Infrastructuresaid another bus stop will create traffic congestion so it cannot be done. Comeaurecordeda video on her social media at 8 a.m. on a recent Friday. Only one car drove by her house during the almost 50-second video, she said.

CBC Newscontacted the Department of Transportation on Friday but has not received a response.

"It's honestly mind-boggling that, like, this is such a simple fix for an issue. And it's just not being fixed. I just don't understand," said Comeau.

Comeau said she isn't looking for a physical sign indicating abus stop or a bench, she just wants the bus to stop in front of her home.The school is around a 15-minute walk from their home, she said.

She also reached out to her local MLA, Michelle Conroy, for help. Conroy confirmed in an email to CBC that Comeau contacted her office.

"I reached out to the Minister who was very interested in helping and forwarded me to a contact that may be able to help. I've reached out to the department and I'm hoping for a positive outcome for them," wrote Conroy in an email.

On Monday, the Department of Education said in an emailed statement that it isresponsible for ensuring transportation regulations are followed across school districts, but that "school districts are responsible for their own transportation operations, including the establishment of bus routes and loading points as per transportation regulations and the Education Act."

Comeau said she's been working on getting this bus stop for three years since Claire would often accompany her to the bus stop with her step-siblings. She said theAnglophone North School District directed her to the Department of Transportation, so this year, she called that department directly.

CBC left messages for the Anglophone North School District with no response.

More training required

Comeau said she doesn't think anyone involved is trying to be malicious, instead she suggests it may be that not many people know much about juvenile arthritis.

The chairperson of the New Brunswick Coalition of People with Disabilities, Shelley Petit, agrees. As a former teacher and parent of a child with autism, she said she has a good handleon the accommodation issues in New Brunswick.

"There needs to be a lot of training within the districts, within our provincial education system, on all disabilities, whether it's a visible disability, an invisible disability or mental health disability," said Petit.

She said she's offered to put together provincial programs and would be more than happy to work with the other disability organizations in the province to help with training, but "all we get back are crickets in response," she said.

Petit said there are going to be consequences for Claire if she has to go to school while in pain. She said if a child has to go to school hurting every day, they won't be able to focus or learn to the best of their abilities.

"She's eventually going to associate in her mind school with pain," said Petit. "Right then and there, we've taken away her best chances of becoming her best self. And that's not fair over a bus stop."

Petit said the only way it seems people can get educational accommodations for their kids is by going to the media. She said she also recommends getting a doctor's note claiming the need for the bus stop.

Claire's diagnosis

Comeau took to social media about her situation and said her Facebook post is meant to educate people on juvenile arthritis since she feels the responses she's received from her request demonstrate ignorance about the nature of Claire's illness.

Comeau saidClaire's journey started when she was just18 months oldwhen her foot got caught under a Ninja Turtle play car. Her ankle started swelling so they took her to a physiotherapist. When the swelling spread to her knee, the family sought more tests. She was eventually diagnosed at the IWK Health Centre in Halifax.

Claire has had to take a number of very serious medications to control her symptoms, including a chemotherapy agent. Her fingers are disfigured from the disease and when she gets cold, she cries in pain.

"This just seems like such an easy fix. Let her stand in my entryway of my house," said Comeau. "Let her be warm, go on a warm bus, go into the warm school. It's just such an easy fix. I don't understand it."