The Nikolic family has overcome more adversity in the past two decades than the average family would face in a lifetime. They’re met with new challenges every single day.
“We’re always kind of in a crisis mode,” says Mark, patriarch of the Nikolic family. “We’re not really stopping to smell the roses. We don’t have that time.”
Mark and his wife, Hilary, struggle to ensure their twin sons with autism receive the care they need, and that has come at a price. They’ve mortgaged their home three times, and it has been in disrepair for years.
“I was staying awake at night, thinking, ‘what are we going to do to move forward?’ We can’t live in the house the way it is, but we also can’t afford to do anything about it,” says Mark.
The Nikolics have three sons in their 20s. Alex, 25, lives at home and helps care for the twins, Eric and James, 23.
The twins are also non-verbal and developmentally delayed, and they suffer from seizures. The severity of their symptoms has resulted in many damages to the Nikolics’ home.
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“We started off with a $90,000 mortgage, which has morphed to three times that much now,” Mark said.
Although the couple has spent all of their savings, they would do it again to provide the twins with the help they need.
“We put them before paying off the house,” says Hilary. “But the school is so good and so beneficial for them for the rest of their lives.”
The twins attend New Haven, a non-profit organization committed to being a centre of excellence in the treatment and education of children and young adults with autism.
“It’s the only thing that really keeps us going, I think,” says Hilary. “There are people there that really care about them and their development, and love them.”
Alex, who recently graduated from teachers’ college, has been hired by New Haven.
“The boys listen to him very well,” says Hilary. “He’s always had empathy from kindergarten, to Grade 1, all the way up; all the teachers always praised him.”
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Between the two of them, Mark and Hilary work seven days a week. Other than their honeymoon, they’ve never been on vacation.
“It’s been a challenge,” says Mark. “There’s no time to make time for ourselves.”
Despite all the hardships, they remain a strong and committed couple.
“There’s still a lot of conflict,” said Hilary. “But we still love each other.”
In early 2018, Mark and Hilary’s life took a sharp turn for the better when they were selected for the Design for Hope project.
Design for Hope is an annual charity endeavour led by Stacey Cohen, a Toronto-based designer. Cohen brought together a team of over 100 tradespeople and vendors to renovate the Nikolic home.
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The Design for Hope team aims to transform not only the homes of selected families but also their lives.
“We went through a lot of social organizations that provide social services to families who have different challenges,” says Cohen. “The Nikolic family’s application came into the office, we read their story, and it was just unanimous.”
Because of the twins’ symptoms and behaviours, this was a massive undertaking for the Design for Hope team. They decided it was necessary to demolish the interior and start from scratch.
“This is going to be a really special project in the sense that it’s not going to be like any other home,” Cohen said in the beginning stages. “This is going to be like a facility.”
On top of the typical planning and redesigning process, Cohen had a lot of important research to do.
“There are obviously a lot of restrictions and things we need to consider because of the boys’ severe form of autism,” Cohen said.
With the help of Eric and James’ instructors at New Haven, the Design for Hope team came up with a plan to have the walls padded, create lockable pantries for the family’s food, and properly secure all of the doors in the home to ensure the twins are safe.
Initially, the projected cost for the renovations was $350,000 in time and materials, with a completion date of December 2018.
But as December neared, the completion date was in jeopardy.
“It’s the busiest time of year for trades,” says Cohen. “Everybody is doing this on a volunteer basis and we have to be respectful of that, and let people come when they can.”
With the holidays and several city inspections delaying work, the deadline was postponed to February.
“The timeline is aggressive,” said Shawn Mecklinger, a volunteer who is president of Kilbarry Hill Construction Ltd. “If everybody keeps the focus on why we’re doing this, it gives everyone an extra incentive to focus and get it done.”
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Although there were many challenges throughout the project, the Design for Hope team moved forward by focusing on the meaning behind it.
“If we can help them get through their day-to-day just a little bit easier, and they have a home where they feel comfortable and safe, then I think this project will be a success,” says Cohen.
When the reveal day finally arrived on March 28, the Nikolic family couldn’t wait to see the changes.
“I’m so excited,” said Hilary.
“I can feel the butterflies,” added Mark.
Inside the home, Mark and Hilary’s bedroom has been enlarged, and Eric and James now each have their own bedroom.
Alex, who never had a bed in his room, now has his own space in the basement.
The kitchen has also been expanded, with the fridge enclosed in one of two locked pantries due to the boys’ inability to understand what’s appropriate to eat.
The twins will benefit from a fully equipped Snoezelen therapy room in the basement, complete with sensory walls, a stationary bicycle, a swing, and other materials and activities suited to their interests.
“This room is dedicated to Eric and James,” says Cohen. “The idea is that hopefully a lot of their energy can be refocused into productive activities.”
Touring their new home, the family says the transformation will bring some positive change to their lives.
“Daily life going from here on out is just going to be so different,” says Alex. ”It’s going to be so much more organized. We’re each going to have things as simple as having our own showers in the morning, and it’s just going to provide a sense of overall calm, I think.”
Alex, who often worries about what’s going on at home while he’s away from his family, believes it will be a little easier for him to go about his daily life.
Mark and Hilary, overwhelmed with gratitude, can’t thank Cohen and her Design for Hope team enough.
“To everybody that really put forward their volunteer time, their hard work, their energy, their stress level, their frustrations, to make this beautiful, beautiful house for us, thank you so much,” says Hilary. “It’s going to make a whole lot of difference in our life.”