The village helped to raise our son: A Smithers family reflects

By Vince Terstappen (This article first appeared in Northern Health’s Newsletter on October 18, 2016)

Caption

Anita Clegg says that community members, organizations, friends and businesses owners have all played an important role in her son Jesse’s inclusion in his community of Smithers.

When you walk into Sport Chek in Smithers and see Jesse Clegg unpacking garments and hanging gear, you may not realize the significance of that moment.

You may not realize the number of people, programs, time and advocacy that created that moment. You may not realize that moment wouldn’t have been possible just 10 years ago, or that it shines a light on some ongoing challenges facing families. You may not realize that what you’re seeing is a powerful example of a healthy family supported by a healthy community.

And this is exactly why Jesse’s story is so important to share

“When you have a child with a disability,” said Anita Clegg, Jesse’s mother, “there are no days off.” Jesse, now 21 years old, was born and raised in Smithers. Jesse has Down syndrome and throughout his life the Clegg family was committed to breaking ground in the community. “We put ourselves and Jesse out there,” shared Anita, “because it was important for us to show that everyone has abilities. As people learn more and connect with Jesse, we’ve seen shifts in thinking.”

When Anita says that “the village helped to raise our child,” this is not just a cliché. While Jesse’s parents continue to assume a strong advocacy role, the impact of community members, organizations, and businesses on Jesse’s life are profound.

Consider the local bowling alley …

“Anything round that moved, Jesse was on it!” said Anita. “So bowling was a good fit. Jesse couldn’t start with Special Olympics until he was a teenager so, when he was 10, we asked about joining the town league. The bowling alley was very supportive and Jesse joined a team with typical kids. In one year, he was the high scorer for the teen youth league! Jesse still loves to bowl and the bowling alley is a safe, welcoming, and familiar place for him.”

and the pediatrician …

“Our pediatrician truly went to bat for Jesse. He understood Jesse’s needs, made connections that others wouldn’t have made, and helped to advocate for Jesse from birth right until he turned 18.”

and the family friend …

“Safe and reliable respite is so important for families,” shared Anita. “We were very fortunate to have a family friend offer to take Jesse one day each week, starting in his last year of high school. They started out by just playing cards with me around but now they spend the afternoon together. Jesse has dinner with her family.”

and the local business owner …

With the support of a microboard and various community members, Jesse recently joined the workforce in Smithers.

With the support of a microboard and various community members, Jesse recently joined the workforce in Smithers.

“Jesse is now in the workforce,” said Anita, “and that involved a lot of people coming together. It was a lengthy process but well worth it. When we told Jesse that the employment plan was going to be possible, his exact words were: ‘Everything is perfect!’”

This process started with Jesse’s microboard (nine family members and community members) working with Jesse to create a picture of his skills, interests and strengths. Jesse shared that he’d love to work at Sport Chek – which came out of the blue to us since he’d never been there. Our local WorkBC office asked the manager if they’d be interested in a supportive employment opportunity. The manager instantly said yes and went even further, integrating Jesse as a full team member, without a support person. His colleagues trained him and have been fantastic. Many of them knew Jesse from school.”

What does this boil down to for Anita Clegg?

“Smithers is a wonderful place and an amazingly generous community. My son knows way more people than I do,” she laughed, “and people watch out for him. There are just a few missing pieces, especially for some of the day-to-day, nitty-gritty challenges of raising a child with a disability.”

Concepts like healthy and inclusive communities can be hard to define, but in Jesse’s case, they are clear and their impact is profound. It’s the friend offering respite, the welcoming bowling team and the local business eager to offer him work.


A family voice for CLBC

CLBC staff can help families to develop networks that will build a village of support around an individual so they can reach their goals.

“Our local facilitator, Shannon Moyle, was amazing at getting us to help Jesse develop his plan,” says Anita. “He developed a relationship with Jesse and others and was aware of the timing of what supports they might need. He and the CLBC analyst were helpful in getting funding, but the critical part was the relationship they developed with Jesse and how they listened to him as he expressed his needs. That was a huge support to us as parents, to know that your individual’s needs are being considered.”

Anita has been a member of CLBC’s North Community Council, one of 13 councils across the province that help build awareness for inclusion, for more than two years.  “I was asked to join council to represent my community and its various needs,” said Anita. “I was unsure at first how I would manage my time. We have a very busy life and I wanted to be sure that any information I gathered from council would get to the right folks and agencies.”

“Being on council is a very rewarding experience; I get to work with others who are strong advocates for inclusion in their communities,” says Anita.

Being proactive has always been a high priority for Anita. “My experiences in the early education world, the public and private school system, the community and workplace environment, have taught me that if your child or individual needs things, it is up to you as a parent or caregiver to make that happen.”

The North Community Council has been working hard to make communities more inclusive and helping recognize those who are. “One local business has just received a Widening Our World Award from CLBC for practicing inclusive employment for a decade and a half,” says Anita.

Consider joining your local council

If you are a family member interested in helping make your community more welcoming, consider joining your local CLBC community council. Find more information here.

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