‘Not a cookie cutter disorder’: Get a look inside life with Shelburne’s Julia Parry – and autism


Published on May 10, 2017

SHELBURNE, NS - Julia Parry is more than just autistic. She has a quirky sense of humour, a fierce love for her sister and is a big fan of hugs. 

The autism spectrum includes children so diverse from each other that if you think you know Julia’s autism, you don’t.  In order to know it, you have to know her, says her mom, Michelle Parry.

“It’s not a cookie-cutter disorder," she says. “It’s not a one size fits all.”

People have a preconception of autism and they tend to refer to that rather than getting to know Julia, Parry says.

They worry loud noises or overstimulation will affect her negatively.  It doesn’t. Because this, Julia has been left out of all but one birthday party.

“People exclude her because of her autism,” said Parry.  “People exclude people that are different.”

And that, she says, is the worst part.

“Autism doesn’t suck,” she said. “It’s everyone else in how they react to her.”

The biggest thing she would like to see others do is to take the time to know Julia the child - not just see the label of autism.

It’s hard, Parry knows. When she got the diagnosis, she felt like Julia’s childhood was stripped from her.

Parry became more than a mom that day.

“I became her therapist, her doctor, her teacher and then her mom,” she said.  “We, as moms, put pressure on ourselves to be a superhero.”

She also wishes she could have known how to better navigate the system.

“Don’t assume the education or health care system gets it,” she said.  “You are the one who knows your child best.”

But, she adds, a little support goes a long way. That’s why she’s hoping the community will rally around their family as they walk with Julia June 10 at the Yarmouth Walk the Walk for Autism. She’d like to see the community support her daughter in any way people can: donating, joining the team or offering a word of encouragement.

“Just knowing someone cares is important,” she said.  “I need encouragement through the hard times.”

It can be isolating as a mom, she admits.

“I’d like to see people advocating for Julia and not just me,” she said.

Parry is quick to point out the joys of life with Julia. It’s the little things, she says, that are treasured by their family.

“When Julia says, 'Mommy, I love you',” said Parry.  “It blew my heart up.”

Parry did not know whether Julia would ever speak and every word is cherished.

“We celebrate things that most families wouldn’t,” she said.  “Everything is bigger.”

Bigger celebrations for what most would consider everyday tasks; bigger love; and bigger fights with even bigger victories.

 

 

Go online: To support Julia and Walk the Walk for Autism visit

http://www.walkthewalkforautism.ca/team/748

 

If you go: The walk will be held at Central School, Yarmouth, on June 10 from 9 a.m.-12 p.m.

 

Did you know?

An education day will be held June 17 at NSCC Burridge campus with keynote speaker Dr. Robin McWilliam, a professor and department head at the University of Alabama. McWilliam will speak about routine-based interventions for children with ASD.