TIM SMITH/BRANDON SUN
Janelle Zazalak visits with her nine-year-old daughter Tatyanna in the living room of their home just outside Brandon on Friday. Tatyanna, who has late infantile batten disease, has missed the first three months of the school year.
Trent and Janelle Zazalak feel like they are drowning in a sea of paperwork and bureaucracy, worse yet, it’s preventing the couple from doing what’s best for their nine-year-old daughter.
Tatyanna Zazalak should be in school today, instead, she’s at home watching television.
Tatyanna, who should have entered Grade 4 this September at Earl Oxford School, has late infantile batten disease — a rare, fatal autosomal recessive neurodegenerative disorder in which her body doesn’t properly clear out the buildup of toxins in her tissue.
This year, the family, with the support of the Brandon School Division, decided to change Tatyanna’s status from a URIS B to a URIS A designation.
What that means essentially is in the past she was always supported at school by an educational assistant, whereas the new designation will require a trained medical professional to be with her at school.
The fact that Tatyanna had already been in the school system led the Zazalak family to believe the new designation would be more of a formality, rather than the long, drawn out process they now find themselves in.
"The biggest issue is the length of time that it has taken," said Tatyanna’s mother Janelle Zazalak "Nothing has changed in regard to Tatyanna’s health. Everything has functioned a certain way in the past in regards to school and we have a great team at the school, but right now we’re stuck playing the waiting game and we have no idea how long it’s going to take."
Last year, Tatyanna’s health restricted her to going to school about three times a week for three hours a day — three very important hours, according to her mom.
"School gives her the necessary stimulation and sitting at home all day isn’t good for anybody," Zazalak said. "School gives her that contact with kids and provides a degree of nomancy that is important to her. It benefits her. She loves going, the kids love having her there so we try to makes sure she gets there."
And getting her there is no easy task either. Zazalak admits that some days it would be far easier not to bundle up her daughter and begin the arduous process of getting her to and from school, but she also knows some of Tatyanna’s best moments come from places like the music room in the school.
"I’m a mom and I know my time with her is limited, but when you watch her at school, you know she wants to be there," Zazalak said.
Because of Tatyanna’s condition, Zazalak is also sensitive to the needs of the other students at the school. Tatyanna, for the most part, moves from class to class where lesson plans and activities are best suited for her and the rest of the class.
"We don’t want her to ever be detrimental to the learning experience of the other students," Zazalak said. "We always want to make sure it’s a good experience for the kids and it’s a good experience for Tatyanna."
Those good experiences however, make not being able to take her to school that much more difficult on Tatyanna and the family. And while Zazalak understands getting the new designation takes time, she also said there have been times where the BSD has appeared unorganized in the process.
"I think there was some ignorance on behalf of the school division," said Zazalak about the process of changing designations. "I don’t think they deliberately misled us, but not being able to start in September and not communicating with us where we are in the process is frustrating."
It also raises the question of equal access. And whether a nine-year-old girl’s right to go to school is being infringed upon.
"She has never been outright denied, but she is entitled to equal access and equal access is September," Zazalak said. "All of our kids, with disabilities or not, have access to go to school."
According to BSD associate superintendent Greg Malazdrewicz the application is now in the provincial government’s Department of Education.
"There is an application process that has to go through," Malazdrewicz said. "We don’t control the timelines and we can’t press things any faster than they come to us from other areas."
Malazdrewicz said the BSD advocates strongly for all its students and from what he’s learned in his consultations with the province doesn’t expect there to be a problem securing the funding for the medical professional.
"We are in constant dialogue with the province in regards to funding for special needs students," Malazdrewicz said. "I’m not anticipating any problems with getting the funding. The process has been slow, but it’s been thorough and comprehensive."
He also said the division is always concerned when a potential student isn’t in class for some reason or another and added that the BSD has already been in contact with an agency that will help find a suitable professional for the position, once the division is approved the funding, to ensure the process is a quick as possible.
Republished from the Brandon Sun print edition December 17, 2012