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To an outsider, life as Sabrina Raffa’s big sister hardly seems a bowl of cherries.
Sabrina has autism, anxiety disorder and attention deficit/hyperactivity disorder. A triple whammy.
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She is a 17-year-old walking firecracker. Loud and startling.
She emits a daily string of sound bites — lines from movies, YouTube videos, other random thoughts that bubble up.
These burst forth like cherry bombs, every few minutes, or seconds, any time of day.
I ask Kristina Raffa: Living with Sabrina must drive you to distraction, right? You must wonder, ‘Why us?’
“Actually, no, I’ve never asked that,” says Kristina, 21. “I mean, she’s my sister.”
We’re in the cafeteria at Variety Village. If there is a place indifferent to Sabrina’s differences, it’s the Village, which is the epitome of real inclusion. Half of its members have a disability, and many of those are on the spectrum of autism. I have introduced you to some of them over the years of the Sun Christmas Fund.
Their siblings are often saints. It’s a job requirement.
“At first I was confused,” says Kristina, of their early childhood. “I knew my sister was different. I just didn’t understand why and what it would look like.”
The signs, says the girls’ mom, Mary Raffa, became obvious as Sabrina missed age markers, from eye contact to language. “In fact, she didn’t really have language,” says Mary.
Doctors diagnosed Sabrina before she was three. (A middle sister, Nathalie, now 18, toddled through a typical childhood.)
In the cafeteria, Sabrina is on a roll. Her outbursts are not always random.
“You’re bald!” she proclaims to all and sundry when I take off my tuque.
Says Katrina, with a wry smile: “She does have a great sense of humour when you get to know her.”
Mostly, Sabrina launches into lines plucked from corners of her memory.
“The only way down is down!” she declares several times in the cafeteria.
And, “We’re stuck on the roof!”
The references puzzle the rest of us, and Sabrina just looks mysterious. I later trace them to Season 6, Episode 3 of Bob’s Burgers. The Hauntening (sic). It’s about the Belcher family’s visit to a haunted house, during which, you guessed it, they get stuck on the roof.
Funny, but Sabrina, namesake of a TV witch, is not fond of ghosts. In the Village cafeteria, she finds an animated version of A Christmas Carol on YouTube, and gets quite agitated at Scrooge’s spectral visitations.
Such is life with Sabrina Raffa. Kristina and their mom are paragons of patience, well versed in quiet words and gestures to calm the stormy sea named Sabrina. For instance, asking her to name her three pet rabbits — Tango, Clover, Salem — brings a minute of quiet concentration.
“I’ve learned to understand her, and that she expresses herself differently,” says Kristina. “All her little signs and tells. I’m able to understand what she’s feeling or going through.”
Facial expressions, voice tone, breathing rate all tell a tale, which might be as simple as, “I’m hungry.”
As with all Variety kids, it’s a two-way street.
“Having her as my sister, has made me a lot more empathic and compassionate,” says Kristina. “I learned from her — which helped me with others.
“I feel privileged that I didn’t have to wrap my head around things like autism, as most people do, because I grew up with it.”
So, she now works part-time at Variety Village, and at the Village’s famous summer camps, where her sister is a fixture.
She knows her future includes caring for Sabrina, who is unlikely to become independent.
Kristina is finishing a kinesiology degree at the University of Guelph-Humber, with emphasis on accessibility, including the sensory barriers — lights, sound — that thwart her sister.
Again, you are thinking, life with Sabrina must be a constant bummer.
Think again.
“She’s my sister and I care about her,” says Kristina. “I don’t like when people judge her.”
So, their family charges ahead through the world, Sabrina in tow. They do Canada’s Wonderland, Niagara Falls. Everywhere your family goes, except sometimes Kristina has to rise to her sister’s defence and stare down a gawker.
They listen to Ed Sheeran, or even Pitbull, Sabrina’s favourites.
She loves the Village’s outdoor swing, the sensory therapy room, the extra warm embrace of the pool.
“This is her domain,” says Kristina.
As Ed Sheeran sings, “Well, I found a girl, beautiful and sweet …”
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STROBEL: Big brotherly love at Variety Village
JOIN THE VARIETY FAMILY
Some Variety Village kids are poster cute and cuddly. Others, not so much. Their lives are just as challenging, though, in different and often more perplexing ways.
They all need Variety Village, the renowned sports complex in Scarborough catering to kids with disabilities. They all need our help.
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Anonymous, $100
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Total: $7,465
Total to date: $29,010