Calgary family fights to ensure children with special needs have necessary resources – Calgary | Globalnews.ca
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A Calgary family is advocating for their son and all other children with special or diverse needs to be able to experience school completely — complete with riding the bus.
Carlos Silva and Sky Yanke’s seven-year-old son Milo has Dravet syndrome, a rare type of epilepsy. Milo has suffered severe seizures since his diagnosis at nine months old.
“He’s had 20, 30 seizures a day,” Silva said. “One seizure alone for two seconds can completely incapacitate him.”
Milo being tested.
Courtesy: Carlos Silva
Milo is also mostly non-verbal and just started walking steadily in the past couple of years. Still, his parents want him to have a normal childhood and that includes going to school.
But Yanke told Global News when she tried to get him enrolled in Grade 1 at his local school, she faced some roadblocks.
“It was a really big struggle to get him a nurse to be at school, as well as other supports at school,” she said.
She won that battle, but another one was on the horizon.
“They said: ‘Well, he’s not been approved to have a nurse on the bus,’” Yanke said. “Milo deserves to ride the bus as well as go to school in a safe environment like every other child.”
“The smile on his face and just being able to be with his peers on the bus and just feel like he’s included as part of the team, the school, the environment and the community is just beautiful — he deserves that.”
The family said a nurse has to be on hand at all times because if Milo seizes, he can die in minutes. But communicating that to the school district they said, was not easy.
“It’s difficult,” Silva said. “It almost feels like society is not ready. Society is not set up for him.”
“It is important for him to have that experience because we don’t know tomorrow.”
Milo with dad and sister.
Courtesy: Carlos Silva
Not one to give up easily, Yanke reached out again to the Calgary Catholic School District. She pushed for solutions and was again successful.
Trisa Soroski, Supervisor of Diverse Learning, was instrumental in getting the plan sealed. But the longtime educator said it isn’t always easy to meet everyone’s requests.
“It’s not an easy thing to do,” Soroski told Global News. “We have to look at each child and each case.”
Soroski pointed out the key is trying to find out what’s needed to support the student and then figuring out how to bring the right people around the table to talk about it.
“Then when we get everyone around the table, we have to come up with a creative solution that’s also fiscally responsible as well,” she said. “That’s probably the biggest challenge — getting the right people around the table to come up with the best way to support that we can.”
Milo’s case, she said, involved a team of professionals from education, transportation and health all collaborating for his best interests. Ultimately, that team decided getting a nurse to ride on the bus with him was the right thing to do.
“We really do the best we can with the money that we have. We just try to come up with the best solution possible.”
She also gave a lot of credit to the family, which she said was assertive but very respectful.
“It’s not (the district’s) realm of expertise to manage the medications, the protocols, anything like that,” Yanke said.
“This is all new and especially with more kids coming in with diverse learning needs — challenges — this is a learning curve for everybody. So I’m very understanding that it’s going to take some time and we’re going to need to work together.”
Yanke added advocating for Milo has been a fulltime job, on top of her other full-time job. She fears for the families that don’t have the time or resources to do that.
“A lot of information is not necessarily available for parents, and they may not know when or how to ask for information. We just wanted to share that you’re fully capable and allowed to ask for information and resources when it concerns your children.”
“It’s hard on me but it’s worth it for Milo,” she said. “I’ll do it every day for him. He’s my world.”
“He’s a warrior,” dad agreed. “He’s a warrior.”
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