A boy with Down syndrome and his single mom find their West Island 'family'

It's a Sunday afternoon at 10-year-old Soran Guarascio's house in Dorval — or as Soran likes to call it, Zach Day.

Perched on a grey leather couch in the living room, 21-year-old Zach Fenlon strums a pop song on the guitar while Soran twirls a tuque, his feet shifting to the beat, nary a still muscle.

"Today I don't feel like doing anything," Fenlon sings.

"Doot di doot doot," back-up singer Soran chimes in.

He tosses the tuque aside and picks up a toy microphone, thrusting it towards Fenlon's mouth.

"Hit it!" he orders.

Fenlon doesn't flinch, just smiles and keeps on singing.  

They've clearly sung this tune before. Over and over.

Soran, who has Down syndrome, needs this kind of repetition for the song to stick.

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Life with Soran

Fenlon is the big brother Soran never had, and the two hang out pretty much every week.

"He's family," says Fenlon. "He brings a lot of joy to my life, a lot of humour, unpredictability. You never really know what's going to happen."

All of that is captured on their very own Youtube channel, Life With Soran, which raises awareness about the abilities of people with Down syndrome, or trisomy 21.

"I really wanted to show that Down syndrome is something to be celebrated," Fenlon says.

People with the genetic disorder can lead a perfectly normal life, he says.

"Well, not quite normal," he adds, "but who wants normal? Someone can lead a perfectly happy life, full of adventure, joy and humour."

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Fenlon met Soran three years ago at an after-school program at the West Island Association for the Intellectually Handicapped, or WIAIH.

Fenlon is one of about 500 volunteers donating their time to the non-profit group which supports people with intellectual disabilities or autism, and their families. The organization offers a broad range of services for clients of all ages.

One of WIAIH'S many resources is the Pat Roberts Centre, a nursery school in Sainte-Geneviève, offering stimulation for children in small groups of four. The staff work on developing communication and motor skills and social interaction.

Some of the pre-schoolers who attend are waiting for an official diagnosis to be eligible for government services. But even without a diagnosis, anyone who shows signs of delayed development is welcome.

The centre also offers hope and support to parents. Executive director Lyne Charlebois says when some parents first arrive at the centre with their child, they feel defeated.

"They come from the doctors and just expect their child will never speak, never walk, and we start showing them they'll surprise us everyday," she says. "Last year we had a child with very severe motor disabilities who, when he first came, could not even reach out for a cookie, and by the end of the school year he was feeding himself with a spoon."

Soran's mother, Sonia Guarascio, a single mom, reached out to WIAIH shortly after her son's birth and diagnosis.

"The first thing — which was wonderful — is they congratulate you on having a wonderful baby, which is awesome."

Life for the Guarascios  is hectic and rarely slows down.

"Some days I'm not even out the door to go to work, and I'm ready for bed again," says Sonia.

WIAIH has been her lifeline — not just in terms of services for Soran, but for moral support during difficult moments.

"On a rough day I would go and cry, let out my emotions, and they're always there," she says. "Even today, they're always there to just listen."

A year and a half ago, Sonia found out she had breast cancer. WIAIH was there again, for her this time, through the surgery, the chemotherapy and the radiation.

"Online, they emailed people saying Sonia needs meals prepared after she's done surgery. And they had a cooler at my door where people would just drop it." she says "No one wanted to interrupt me. It went beyond Soran."  

And beyond a mere resource centre.

"They've all become family," Sonia says. "I don't know what I would have done without them."

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WIAIH's goal is to offer similar, free support to disadvantaged families across Montreal's West Island.

Charlebois wants to make sure every child in need of developmental resources gets them. By next summer, they hope to break ground on the Kizmet Centre, right next door to the Pat Roberts Centre, where those services would be available.

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