The 'exhausting' battle to get schools to treat kids the same

Sophia got to go to the waterslides after all.

Leah Burrell just wishes it didn’t take an administrative battle for her 12-year-old daughter to get to experience the same field trip as her peers.

Sophia’s story made news last week when Tamara Taggart, an advocate for people with disabilities, wrote online that the Langley Grade 7 student had been told she couldn’t go to the waterslides because of a staffing issue.

An outpouring of support followed, prompting the Langley School District to figure out a way to allow Sophia to join her classmates. For Burrell, the episode was just the latest in a string of battles to ensure her child is included in school activities. And she’s hardly alone, she said; her story prompted hundreds of parents across the province to contact her with their own struggles.

The widespread ongoing nature of the struggle is dispiriting, Leah told The Current. But there’s also hope thanks to Sophia’s generation.

Sophia visited the Cultus Lake Waterpark with her class last week and had a “great time,” Burrell told The Current. It was far from her first trip to a waterpark.

Sophia, who has autism and epilepsy, loves not only the thrill of sliding, but also just being near them.

“She likes the sound of the rushing water,” Burrell said. “It’s very regulating for her just to sit and listen.”

Sophia is a happy 12-year-old who loves to swim, camp and “get out there in the world and … try new things, go to new places and travel,” Burrell said.

She also requires more support in life and in school. But her mother says it’s been a constant struggle for Sophia to ensure her daughter can get the same school experience as her peers.

We asked her about the struggle to ensure her daughter is included at school. The interview has been lightly edited for clarity.

The ‘battle’ to be heard

FVC: Can you tell me how Sophia’s autism and epilepsy has affected her schooling?

Burrell: It’s affected every ounce of her schooling. It’s been a battle for every year that she’s been in school, starting way back in preschool. The first year of preschool, she was not able to make it through because things were just not set up to accommodate her. And when she started in public school, in kindergarten—she has a service dog and it was a battle to get the service dog into the school. Just every year there are constant struggles because she doesn’t fit into that little box of most kids.

FVC: What’s that battle like? As a parent, what do you have to do to get those accommodations, and what impact does it have?

Burrell: It’s such a process to get heard. You have to follow a very specific order of events. If there’s a concern, you first have to talk to your child’s teacher and they have 48 hours to get back to you. So you email them and if they can’t resolve it, then it has to go to the principal. And if the principal can’t resolve it, it has to go to Learning Support Services. And if they can’t resolve it it has to go to—there’s about 10 people until you get to the superintendent or assistant superintendent. And each time there’s a 48-hour turnaround. So by the time you finally speak to the person that can actually have authority over the situation that is occurring, or have impact on it, it’s taken two weeks to get to that point.

In the meantime, depending on what it is, Sophia has either not been in school because I’ve pulled her out of school or she’s been struggling with the issue. And it’s continued to get worse. So that’s incredibly frustrating. It’s exhausting as parents.

I know I’m not the only one. This is the same process that so many people have reached out to me in frustration about. We’re drained. We are already at max capacity raising children who have different abilities and supporting them and trying to fit them into the world. We don’t have the time in our day or the energy to go through this whole process to be heard.

FVC: Does it feel like the processes are set up more for the school district than for the parents and children?

Burrell: Absolutely. I think there’s a big piece of it that is set up to deter parents from going to the superintendent with all the little concern and whatnot. I get that. But I was speaking to them about it and I was like: ‘I am not a parent that goes to you for all the little concerns…’ The only concerns I ever go to the district about are the big ones, like what we’ve just gone through, and I still have to follow that whole process. I think it’s set up so that most people would just give up because it’s too much.

That doesn’t help kids. Then the child just struggles or the child doesn’t get to go on the field trip or the child doesn’t get to be included. It’s not fair. It’s not representing children well.

Secrecy and roadblocks

FVC: What can be done to remedy some of that and make it easier and more likely that these things get fixed when they need to get fixed?

Burrell: Communication has always been a struggle with the school district. There’s just so much secrecy. They don’t tell you all the information so you’re left questioning and that builds distrust and once that seed is planted, as parents, we start to think that they’re holding back information in a lot of kids’ situations

As you go through that process of 48 hours [to get an answer or talk to another person] every time, that just makes the distress grow and grow until we just feel like [the] system is against us.

(Burrell said the system could be improved with faster communication perhaps and, potentially, more designated staff members assigned to handle inclusivity issues for certain schools.)

Something that’s just going to cut out the six people that you have to go through first to get to the superintendent: one person that’s our contact who could then refer you up to the superintendent.

FVC: You’re suggesting something like a designated advocate who would be responsible for fielding these [issues] and then figuring out who deals with what—is that what you’re talking about?

Burrell: Yeah. The way it works right now is we have one Learning Support Service person in the district who works for the entire district—for all of high school and middle school. But that person can only handle so much.

(Burrell said there’s also a need for more consistent help among schools.)

My experience at [Sophia’s] school is vastly different from the experience of someone else in a different school in the same district… It’s just the luck of the draw sometimes. There is no consistency, and I’m not just talking about Langley. In all the school districts around the province, you can have one fantastic school and then the next school in the same district is not supporting their students at all.

FVC: Do you think enough school officials sufficiently realize the importance of inclusion?

Burrell: Probably not the majority of them. Most of them probably aren’t in a situation where they have a child with special needs so it’s hard for them to think about these situations. Most people aren’t in that situation and when you’re not it’s hard to think about what it’s like to be a parent or a person in this situation. For the most part, there definitely seems to be a lack of understanding as to what inclusion actually means and how to facilitate that in classrooms and with students. It’s one thing to say you’re inclusive, it’s another to actually follow through on that.

What inclusivity means

FVC: How do you define inclusivity for schools?

Burrell: It’s being a part of the community. It’s not being segregated in your own class, in a resource room. It’s being offered a seat at the table. It’s being seen as a valuable contributing member in the classroom and in the school community too.

As adults, our role is to facilitate that, and the way we respond to that, the way we speak of children, the way we talk about them, the way we include them, is going to set the stage for how children view, include, and want to involve them in their classroom and school community.

If it’s coming from above where we’re saying ‘Hey, this one child can’t go on a field trip,’ that’s going to trickle down to the students eventually and they’re learning that’s okay behaviour to exclude them based on their disability. That’s why it was important for me to push for her to go; because [excluding Sophia] is teaching other people that it’s okay to just not involve her because it might be complicated.

FVC: How did Sophia react when she learned she was able to go?

Burrell: She was thrilled. She jumped out of bed that morning. She hates going to school, but she was happy to go to school that day.

FVC: Does she have a lot of friends in her class?

Burrell: She has kids who are very inclusive and very kind to her and have treated her well. I know a lot of the students did reach out, or have their parents reach out to the school and inquire about why Sophia is not going and [say] that ‘If Sophia is not going, I’m not going.’

That really shows us that students, that generation, is much further along than we are currently. They’re able to see that she should absolutely be included without a doubt. I’m hoping that’s what will drive inclusion, as more of her generation grows up.

How adults can learn from kids

FVC: It seems like one of those things where the adults get used to a certain way of being and it takes a kid to say ‘Okay, wait a second, that doesn’t seem fair.’

Burrell: Yeah. Kids see things in a very simplistic light sometimes and that’s a good thing. They just say: ‘Why shouldn’t she go? And that’s what we should ultimately be saying too. It should have been thought, without a shadow of a doubt from the very beginning, that ‘We’ve got to find a way to make this happen.’ It should never have been a question, and that’s what kids view it as.

FVC: It’s been about a week since this started. Has the school district asked you what it can do better in the future to help kids like Sophia and others?

Burrell: The school district hasn’t reached out to me at all aside from letting me know that she’s going on the field trip.

FVC: Are you disappointed in that?

Burrell: Yes. I mean, I don’t expect anything different. I wouldn’t have expected that they would reach out to me because they never have in the past. I happened to be in school today speaking with somebody from the district and I was talking about a lot of these same issues. But that was me driving that conversation versus them reaching out to me.

FVC: Is there anything else you’d like to share?

Burrell: It’s important to stress that, in the end, it wasn’t even about her not going on field trips so much as what that meant as a whole. It showed people that it was okay to exclude her for various reasons, whatever those reasons were.

But it’s a much bigger piece than a lot of people recognize. I’ve received hundreds and hundreds of messages from families all across the province, all across our district, and all across the country about how they have been excluded, how their child hasn’t been allowed to go on field trips, how their child hasn’t been included in the classroom, how they haven’t been included in the school.

It’s a significant problem that is not really recognized. My hope is just that this would get the conversation going—that people who don’t have special needs children can recognize the struggle or try to understand the struggle that we all go through.

FVC: How do you process that feedback? Does it make you optimistic that there’s all these people on your side and pushing for the same thing? Or is it kind of depressing that you’ve got all these people facing the same issues that you just encountered?

‘We feel defeated’

Burrell: I'd say as a whole we feel defeated. We feel like we're not being heard. We're not being listened to. There's no accountability, there's no consistency, there's no communication. And so that makes us feel defeated. We should feel that we have voices that can be heard.

So my story is a small one but fortunately, people reached out to me because they felt like it was one moment and a small little blip of time that some people listened, and it was something that they have not had the ability to get their voices across. I don't want to hear other people struggling with the same thing. I want to be the only one because that would mean it's a much better world than it is.

It's hard. I appreciate all the stories and I love people reaching out. But I don't want anybody to be struggling. It's very unfortunate.

The Current emailed the Langley School District about the concerns raised in this story, including the district’s awareness of inclusivity challenges for parents, its plans to improve the system, and why officials haven’t proactively sought feedback on how it can better help parents. They said they couldn’t address Burrell’s concerns specifically “due to privacy.” You can read their full response, which does include details on some district inclusivity policies here.