'I'd like to see siblings treated more like patients'

By Louise Kinross

Victoria Rombos has worked in Holland Bloorview’s Ronald McDonald playroom as an early childhood studies student, then volunteer, and now staff member. But her connection with Holland Bloorview goes way back. Victoria’s younger sister Chrysoula, 19, developed a seizure disorder after having cataract surgery as a toddler. "It was a side effect of the surgery, but I only just found that out," Victoria says. "I thought I knew the story, but I keep finding out more." As a big sister, Victoria is very involved in Chrysoula’s life, so it's fitting that she's spearheading Holland Bloorview's new Sibling Support Program.

BLOOM: How did you get into this field? 

Victoria Rombos: It was because of my sister, mostly. 

BLOOM: How would you describe her?

Victoria Rombos: I describe her as sassy. She has an intellectual disability and uses a wheelchair and is non-verbal. We’re not entirely sure how much she understands, but I think she understands a lot more than people think. She’ll laugh at things, or pretend to be asleep and then pop open her eyes. She likes music. The Wheels on the Bus was always her song. I get her to play games on the iPad where she touches things and they change colours. I try to paint her nails sometimes, but she moves around too much. Recently she had a three-month stay at Sunnybrook due to pneumonia.

BLOOM: How have you found the move to the adult system?

Victoria Rombos: My sister is very small, so they were taxiing child-sized equipment back and forth from SickKids. Most of the nurses at Sunnybrook hadn’t encountered people with disability. They really didn’t have a sense of her needs, and my mom was going through the complaint department constantly. Now my sister has a trache, which has been a real learning experience.

BLOOM: Does your sister have home nursing at night?

Victoria Rombos: Until recently, she only had 12 night nursing hours a week, and my mom had to do everything else at night. We were just given an increase to 24 night hours a week.

BLOOM: That’s still a huge amount of night hours that your mom needs to do. What was it like growing up with a sister with pretty complex needs?

Victoria Rombos: It was really interesting. I only felt super different sometimes. The public school I went to had the Wayne Avenue preschool in it, so Chrysoula went there when I was in Grade 2. I remember when I asked the principal why my sister’s birthday wasn’t included in the announcements, like my birthday was. I used to like pulling the wagons with the kids in the preschool and I would get my friends to come and help. Since then, Chrysoula has gone to a segregated school, which works best for her.

I definitely feel isolated from other people sometimes, that I've had experiences that are different from my peers. I feel I would have benefited from knowing there were other kids who had a sib like me. In 2016, I sat on Holland Bloorview’s sibling panel. It was the first thing I’d done as a sib. I remember talking with Michelle Char, who was also on the panel, and being so surprised that she got it. She knew what a suction machine is.

When I was younger, I thought my parents liked my sister better than me because they spent more time with her. I was a little resentful, but I was a really empathetic kid. When kids with disabilities were picked on at my school I would tell people off. I had a lot of family support when my sister was in hospital, and would spend time with my grandmother and other relatives.

BLOOM: So your early experiences with your sister in the health care system influenced your career choice?

Victoria Rombos: Yes. I always wanted to work with kids with disabilities. Initially I wanted to be a teacher. I was interested in a special-education degree at the University of Toronto, but in my last year of high school they changed the requirements to include statistics and the highest math. That wasn’t happening! So I looked at the next closest thing, which was the program at Ryerson.

BLOOM: What ages does the early childhood studies program cover?

Victoria Rombos: Zero to five.

BLOOM: What’s a typical day like in the playroom for you?

Victoria Rombos: As it’s a drop-in, we never know what to expect. If there’s a clinic, we often get three to five kids in the morning, and then afternoons are typically a bit busier. We work with kids who are clients and their siblings.

BLOOM: What are the joys of the job?

Victoria Rombos: I like seeing the relief on parents’ faces when they realize they can take a break, or drop off all their coats. Sometimes parents will talk to me about something I can relate to, because I grew up with my sister. I like that I have that relatable sense. The kids are the most entertaining part. I like the different reactions they have, and when they ask lots of questions, or tell you about their favourite movie or what they've done that day.

BLOOM: What is the greatest challenge?

Victoria Rombos: Sometimes kids will ask a lot of questions of other kids who have disabilities, but without a filter. Sometimes we need to reroute those questions.

BLOOM: You’re running a new support program we offer for siblings aged seven to 18. How does it work?

Victoria Rombos: The sibling program shadows the family workshops that Melissa Ngo runs. They happen at the same time. We wanted to have a holistic family approach, so parents could go to the education workshop, while sibs come to our program, and patients go to the playroom.

There are official sibling programs in the U.K. and the U.S., but not in Canada. I’ve been getting inspiration from looking at those official programs, and then asking our siblings what they’d like to see.

I integrate things about siblings into relational games we play. One is called the spider’s web. One child holds a ball of yarn and says something about themselves, and if what they say relates to another child, that child puts up their hand and gets thrown the ball. It allows you to see how we’re all connected.

I may bring up a disability-related topic when I hold the yarn, like ‘my sister doesn’t talk,’ and see how many other kids relate to that. Another successful one is to ask what they like about their sibling, or what bugs them about their sibling. A child might say ‘I don’t like the sound of my brother’s CPAP machine.'

BLOOM: Why is this program important?

Victoria Rombos: If a child goes to a school that doesn’t have a lot of students with disabilities, or goes to a different school from their brother or sister, it’s important to meet other kids like them, and feel less isolated. Some kids may need to vent about something they feel is unfair in their family, and find another sibling who feels that way. It helps children feel less alone.

BLOOM: What do you think is most misunderstood about siblings?

Victoria Rombos: Even now, there’s a lot of stuff my friends don’t get. They may talk about the future when their siblings will have kids. My sister won’t have children, and it’s not in a bad way, but it’s a newer thing I’m dealing with. We really need to destigmatize disabilities. Even some people in my family will say hi to my sister, but they don’t know how to really approach her. When you have a disability and you can’t speak, a lot of people discount you. They need to realize there’s a personality there.

BLOOM: Do you currently live at home with your sister?

Victoria Rombos: Yes. I’m not in a super rush to move out. I feel like I’m needed there. I would rather stay home and help my parents. Chrysoula was going to school five days a week, but since she got her trache, she needs a nurse. So my mom was told she can only go to school three days a week.

BLOOM: That’s terrible! There seem to be so many situations we’re hearing about where children with disabilities are not able to attend regular school hours, for all kinds of reasons.

Victoria Rombos: It’s not a good situation for my sister or my mother.

BLOOM: If you could change one thing about how we support siblings, what would it be?

Victoria Rombos: Siblings tend to fall into a gap. We have different programs and events for parents. I’d like to see siblings treated more like patients, like they’re important, and not a side thing. We go through a lot of emotional stuff. I remember the first time they intubated my sister and how upset and emotional my parents became. That's when I realized how serious this was, compared to her other hospitalizations. When you see that it’s traumatizing.

To find out more about Holland Bloorview's Sibling Support Program, e-mail siblingsupport@hollandbloorview.ca. To refer your child, fill out this form. The program is funded through our foundation's No Boundaries program.