‘I want to kiss her. I haven’t been able to do her hair’: A mother’s frustration at distancing from her daughter with special needs

Denise Cozier likes to keep her daughter Deshae informed about the little things: for example, the weather, and the days of the week. “We don’t know that she understands,” Cozier says, “but we treat her as though she understands and try to keep her in the loop with what’s going on.”

What’s going on at present is COVID-19, which means that for now, and probably for a long while, Cozier, a Toronto daycare worker, will keep her daughter informed about the little things from a distance, via FaceTime and Zoom.

This is because Deshae, 16, lives at the Safehaven Project for Community Living in Etobicoke, one of five Safehaven facilities in and around Toronto that offers residential and respite care to children with developmental disabilities and complex care needs.

Unlike many other young people at Safehaven, Cozier says that Deshae “was not born with special needs.” Five years ago, when she was 11, she suffered significant brain damage due to a “self-inflicted injury.” As a result, she is dependent on full-time care.

Under normal circumstances, Cozier and other family members visit Deshae regularly. They go for walks and Deshae visits with her grandmother. But Cozier hasn’t seen her daughter up close or hugged her in more than three months because of safety policies related to COVID-19.

Deshae at age 9.

Until recently, visitation was closed at Safehaven, whose population is extremely vulnerable. “The staff (at Safehaven) are great,” says Cozier. “They’ve been really good with the communication piece. I understand they have to put these precautions in place.”

But the outcome of those precautions is painful even if they are effective.

“I want to hug her. I want to kiss her,” says Cozier, about her daughter. “I haven’t been able to do her hair. That’s important for me. I was hoping that after the first stage I’d be able to do more of her daily care.”

Today, Cozier isn’t permitted inside the home to care for her daughter but she is allowed to schedule a short, outdoor, socially distant visit with Deshae. However, she’s reluctant to arrange it because she wonders if a visit absent physical closeness would only confuse and upset her daughter.

“I’ve been to the door to drop off supplies and I can just see in the way that she looks at me (thinking) why are you just standing at the door? Why are you not coming in? She doesn’t know how to communicate that, so I think that makes it more difficult for her.”

The pandemic is difficult for almost everyone, but when it comes to parents, the kind of “difficult” we tend to hear about and read about concerns the stresses of homeschooling and bored kids bouncing off the walls. In other words, it concerns parents whose kids are ever present in their lives. But for parents like Cozier, whose children are in long-term care, their pain is rooted in the opposite feeling: one of longing.

Under normal circumstances, Denise Cozier and other family members visit Deshae regularly. They go for walks and Deshae visits with her grandmother.

“I’ve kind of had to address it with a lot of my friends and family because some people talk about the stresses of having kids at home all day. For me it’s the opposite,” says Cozier. “I wish that I had Deshae with me during this pandemic. I feel like people need to appreciate the fact that they do have children and they can spend time with them at a time like this.”

Cozier hopes to bring Deshae home permanently one day, but her one-bedroom condo isn’t designed to meet her daughter’s needs and she doesn’t have the funds to move into a house that will. She’s been doing hair as a side gig on top of her regular job, “to save up as much money as I can, to figure out the best way of getting her home.”

Susan Bisaillon, the CEO of Savehaven, says the pandemic is taxing on families like Cozier’s, who are adapting to “prescriptive” visitation policies. But it’s also taxing on parents of children with complex needs whose kids are at home, and who are unable to get a break via Safehaven’s respite program.

The flip side of Cozier’s reality is that of Toni Brem, a Toronto mother of three caring for her seven-year-old daughter, Marlowe, at home, alongside her husband. Marlowe has a neurogenetic disorder called Angelman syndrome.

“She’s highly mobile,” says Brem. “She needs one-on-one attention 15 hours a day, ’cause she has unusual sleep. It’s been exhausting.

“I’m used to respite. We do have (government) funding, but our funding is less than an hour of support a day so it’s hard. As strong as I try to be, it’s wearing me down.”

Like Cozier, Brem is admittedly frustrated by the lack of awareness displayed at times by society at large. “I don’t go on social media much anymore because of that,” she says. “The complaints of home schooling, restricted mobility, not being able to go out to a restaurant. When COVID is over I (will) continue to have these challenges.”

This week, Safehaven launched a public education campaign called “We Belong” advocating for people with complex care needs. “I think we’re a better society when we have people with different abilities.” says Bisaillon. She’s right. And we’re an even better one when we support their families.

This story was first published on The Toronto Star by Emma Teitel.