Local mother-son duo fight stigma around being ‘different’

Local mother-son duo fight stigma around being ‘different’

New Agassiz residents hope to make connections in community

Christina Aws and son Joel, 16, have a message to share with Agassiz. They may be a little different, but the pair, like anybody else, want to be accepted and make friendships.

Joel has Treacher Collins syndrome (TCS), a genetic disorder characterized by facial deformities of the eyes, ears, cheekbones and chin, often causing complications with breathing, hearing and eyesight. Joel also has high-functioning autism.

Raising and taking care of Joel on her own hasn’t been easy for Aws.

“We’ve had a very long journey, Joel and I. Every single time we’re in public, we get stares,” she says. “And some of them try not to be so obvious, and some of them are extremely obvious, some of them are mean and some of them are just wonderful people.”

One year ago, the mother-son duo were living in Langley when their landlord told them their building had been sold. After moving five times in 10 years, the idea of starting over again felt daunting.

“I was at my wits end at that point,” she says. “I thought, ‘oh my gosh, I’m just establishing connections here.’”

When she started looking for something new, Agassiz came to mind right away. She and Joel used to take Sunday drives out to Kent while listening to Stewart McLean on the radio. For Aws, who doesn’t get a lot of time to herself, the rolling mountains and endless fields “felt like an energy pill.”

When she came across a fixer-upper in Agassiz, she quickly decided to buy the house and make the move.

A year later, finally feeling that the house has come together, Aws says wants to focus more on meeting people in the community.

“I want to bring awareness so people don’t have these questions about [Joel],” she says. “This is Joel and he’s part of the community. What can we do to be a happy community with differences?”

“We still don’t know anybody hardly,” she adds. “We’ve been in the community and people kind of stare, they kind of smile, but no one really approaches.”

Because of TCS, Joel not only looks different than other teenagers, he also lives differently.

Joel is missing most of his cheek bones and parts of his jaw, so his tongue covers his airway. That means he breathes through a tracheostomy tube and can has to eat through a G-tube. A band around his head keeps hearing aids in place.

Because of the tracheostomy tube, no air is able to go through his voice box. Joel has never spoken a word in his life. But that doesn’t mean he can’t communicate. Joel knows partial sign language and of course speaks with body language. And just because he can’t respond with his voice doesn’t mean he isn’t in tune with what’s going on around him.

“There’s an assumption that because he look’s different, he’s not intelligent,” says Aws. “He is completely aware of everything around him; he sees, he feels. It’s mostly people that don’t know how to approach him that he feels bad,” she says. “But when you get to know him, he opens up. Especially if you like vintage gaming.”

Along with a passion for old-school gaming systems like Nintendo and Atari, Joel spends a lot of time with his dedicated “therapy dog” Corky, who knows nine sign words.

“Corky’s never been formally trained,” Aws says. “But he sits and [Joel] pets him…He sleeps with Joel and he is always present.”

“Joel is authentic, he’s just himself,” she says. “He’s such a true person. He’s real.”

Because of specific medical and learning needs, Aws has always home-schooled Joel. She says living such a different lifestyle can make it difficult to find true friends, both for herself and Joel.

“There’s a lot of stigma about differences,” she says. “I put this hat on now, that I’m an advocate for my son and my goal is to be there for kids with differences and create awareness.”

If people aren’t sure how to approach someone who’s different, Aws says the best thing to do is just come up and say hi.

“We want to talk to people, meet people!” she says. “Ask us for coffee dates, for play dates.”

“Just because you’re different doesn’t mean that you don’t want a friend,” she adds. “[Joel] just doesn’t want to be judged, he wants to be accepted like everybody else out there. It’s not impossible to have a friend like Joel.”

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