Sara Zahan gets a warm feeling when she sees her son Saraf standing in front of a mirror at home, brushing his hair and admiring his moptop coif.
She and her husband haven’t had success taking their affectionate and playful nine-year-old — who is non-verbal, and diagnosed with Level 3 autism spectrum disorder — to a barber or hairstylist. So, they manage haircuts themselves, with strategies like quick trims while Saraf’s asleep.
Given that sensitivity, the couple was shocked earlier this month when they found Saraf distraught and acting aggressively toward them and his caregivers, after one of his classroom educators — a person they say they previously disagreed with over his hair — had cut some of it during the school day.
“I cannot forget [this incident] because my son cannot communicate. He cannot talk. We are the voice for him,” Zahan said.
Despite meetings and multiple email threads over the past three weeks, Zahan and husband Muksat Rahman have felt upset and dissatisfied with their interactions with Saraf’s Toronto school. That’s not an uncommon feeling among parents of students with disabilities, according to experts, who note that these families often face an uphill battle navigating schooling for their children, especially when conflicts arise.
‘This should not have happened’
The Toronto District School Board declined an interview with CBC News for this story, but confirmed some details of the incident in a statement issued Thursday.
“On the morning of April 4th, a Grade 4 student with special education needs, who is non-verbal, became upset about a red, sticky substance in his hair, continually guiding an educational assistant’s hand to his head where the substance was. The EA, hoping to make him feel better, trimmed a small portion of his hair to remove the substance,” the TDSB said.
“Despite the best of intentions, this should not have happened without first checking with a parent. The EA, who has apologized to the family, has been temporarily put on home assignment while the school conducts the appropriate investigation.”
The family acknowledges the apology, but disputes how much of Saraf’s hair was cut — the couple say it was more than “a small portion” — as well as the special education worker’s intention, given prior conversations.
The staffer was “always talking about Saraf’s hair every time we meet her. ‘Did you give Saraf a shampoo? Why you don’t cut [it]? His hair is growing long,'” according to Zahan.
She said they agreed about washing the youngster’s hair daily, but emphasized his and their preference for his longer coif, which they noted didn’t interfere with his daily activities. Instead of bickering, Zahan said, they tried to shift focus to positive topics, such as the skills her child had been learning and working on in class.
After the incident however, when told the school could not secure a replacement educational assistant to work in Saraf’s classroom, the couple chose to keep him at home for much of the following two weeks. Now, Zahan and Rahman are exploring a fast-tracked transfer to another TDSB school.
Resisting seeing kids as needing ‘to be fixed’
When considering students’ successful participation in the school system, one notable factor is how much they and their families feel welcome and valued in school spaces, said Kathryn Underwood, a professor at Toronto Metropolitan University.
For students with disabilities, “we have a ways to go in that regard,” said the researcher, whose areas of study include inclusive education and disabilities studies.
Underwood directs the Inclusive Early Childhood Service Project, in which researchers across Canada are collecting and studying longitudinal data from families of young children with disabilities as these youngsters navigate daycare and school, health care, therapy programs and more.
“We’ve heard many stories where families have had real challenges with getting schools or educators … to see their children as whole and complete human beings, rather than people who need to be fixed,” Underwood said.
Ideally, educators and parents work together — sometimes with additional input from outside advisors or advocates — to create the best learning plan for a student with disabilities. That kind of collaborative discussion should continue in times of conflict or disagreement, with Underwood adding that school leaders should be responsive to families’ concerns.
“Oftentimes schools are trying to manage parents rather than being in relationship with them. Nobody wants to be managed. People want to be in genuine relationship and I think that requires us to see parents as knowledgeable,” she explained.
“That doesn’t necessarily mean parents have all the answers about how to care for their children in every context…. Educators do hold knowledge about programming in their classrooms, but parents have the right to make decisions about their children.”
‘Inclusion without proper support is exclusion’
Conflicts and tensions between families of students with disabilities and their schools are happening at a time when advocates say they’re seeing cuts to special education resources and funding.
On almost a weekly basis this year, staff at the Ontario Autism Coalition have heard heartbreaking stories from Ontario families — from children being excluded from the classroom to safety being compromised, according to Alina Cameron, coalition president and mother of an eight-year-old on the severe end of the autism spectrum.
“School boards do not have sufficient funding for special education classrooms and special education workers,” she said from Thunder Bay, Ont.
“We absolutely love our education workers. Without them, our kids cannot participate at school. And if there aren’t enough of them, [our kids] aren’t participating at school… The one thing that is often said in our world is that inclusion without proper support is exclusion.”
After a few weeks of back and forth with Saraf’s current school, Zahan and Rahman are now moving forward with a transfer to another TDSB location as soon as possible. It’s a bittersweet resolution, because they know how challenging this change will be for Saraf and for their family, which also includes their daughter, a toddler.
“It will take, at least, more than six or seven months for Saraf to have a transition period. It’s not that easy for him,” Zahan said.
Still, the couple hopes to shine a light on the need for better collaboration, communication and responsiveness between schools and the families of students with disabilities.
“We want [this] not to happen to any other kids. Parents should feel safe to send their kids to school,” said Rahman. “As parents, we lost our confidence [in] the school so that’s why we’re moving, but we don’t want it to happen with anyone else.”