harold, Author at Canucks Autism Network

Every year, the City of Surrey hosts one of the largest Canada Day celebrations in BC. Presented by Coast Capital Savings, this past month’s Surrey Canada Day featured rides, fireworks and performances by Bif Naked and Our Lady Peace.

Thousands were in attendance, including Julia Langley and her family. For her 9-year-old son with autism, the crowds and noise of the festival environment can be overwhelming.

That’s why the City of Surrey partnered with us to offer CAN Sensory Friendly Spaces at all their major events. Featuring comfortable seating, sensory toys and quiet games, this was the first year that Surrey Canada Day featured the space for guests in need of a break.

“My son was not coping at all. I thought there had to be a sensory zone somewhere,” Julia shared with us after the event. “Sure enough, I see the CAN tent. And inside is a table of noise-cancelling headphones amongst all sorts of fidgets and sensory gear.”

“My son was desperate to go because he knows that CAN is somewhere he can go and feel better. We are so grateful they were there so that we could all enjoy the Our Lady Peace concert!”

After announcing CAN Sensory Friendly Spaces last year, City of Surrey has taken the lead in hosting this resource. It is thanks to them that families like Julia’s can enjoy major community events like Surrey Canada Day.

Visit City of Surrey’s Accessibility webpage to learn more.

Julia’s son with autism was struggling to cope with the noise of the festival environment until they found CAN’s tent with noise-cancelling headphones on loan.

“We are thrilled to provide a sensory friendly space at this year’s Canada Day. It’s a fantastic opportunity for us to encourage inclusiveness and increase accessibility for all of our residents,” said City of Surrey Mayor Doug McCallum in a pre-event press release. “We thank the Canucks Autism Network for their partnership in creating this welcome addition to Surrey’s Canada Day.”

There are many reasons to celebrate on Canada Day. At CAN, we have special reason to celebrate our country’s diversity and inclusion.

Noise-cancelling headphones and quiet activities in the Sensory Friendly Space.

With groups like City of Surrey, we can continue to make community spaces more accessible for all individuals and families living with autism.

To learn how you can partner with CAN to make your community organization or space more accessible, please visit canucksautism.ca/training or email training@canucksautism.ca!

The next day, they contacted our office to make an astounding donation of $30,000.

Larry’s former business venture, Realtech Capital Group Inc, made an additional donation. And when Vancouver Canucks Co-Owner Francesco Aquilini and his family filled out the remainder of the $60,000 required, we were able to share the good news with our families and supporters.

Instead of a reduced summer program plan, families with autism in the Lower Mainland could benefit from a full six weeks of CAN day camps.

Keara joined Stephanie Jull, CAN’s VP of Programs, Training & Community Engagement, to personally thank Larry and Lyn.

Keara baked the generous couple a tray of fresh cookies. In turn, Larry and Lyn handed over the cheque that will make an invaluable impact on countless families with autism in the coming months.

With the spring season quickly coming to an end, our first of six summer day camps in Vancouver is already scheduled to begin in mid-July.

Thanks to Larry and Lyn, twice as many families will benefit from those programs.

Giving twice as many children a place where they too are accepted.

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Jack is nine years old. He has been a Canucks Autism Network participant for six of those years.

During that time, he has learned to swim, play soccer and do gymnastics, while also enjoying summer camp and family events. More recently, he has donated his own chore money and bake sale profits to CAN. Why?

“So more kids like me can have opportunities to learn and experience new things.”

So when World Autism Month approached this past April, he asked his teacher at École Lord Tweedsmuir Elementary in New Westminster if he could speak to his class. Jack wanted to educate his classmates about autism. And ask them to give back and donate, like he did.

Wow.

His teacher went straight to the principal and asked if they could hold a school-wide assembly instead so that he could reach as many students as possible.

Jack is among several students with autism at his school — some of whom struggle to attend assemblies due to sensory sensitivities. When those students heard that Jack was speaking, they eagerly sat and listened to his entire speech.

When he was done speaking, teachers asked the students what they learned about autism. A sea of hands were raised. The best answer?

“They make good friends!”

Jack’s mom was on hand to see his special moment. “There were tears,” she told us. “Jack was aiming for awareness and acceptance. Mission accomplished.”

This was his speech:

Autism is a neuro-developmental disorder. It means it affects brain development. Autism affects 1 in 66 children in Canada.

Someone with autism can have challenges with social interactions, communication and can have repetitive behaviour. It is not contagious. You are born with it. There is no cure, but there are studies to find out what causes it and how to help people with autism.

I was diagnosed with autism when I was 2 ½ years old. For me, having autism means I do things differently from others. I like to arrange my food and dishes in a certain way when I eat.

My brain sometimes takes a while to understand what is said to me. That is why I don’t respond right away when someone is talking to me. I need extra help and time between activities. I forget instructions if there are too many steps to follow.

But I have a good memory when it comes to music or songs. I can teach myself to play a song on the piano just by trying out the notes. I remember a lot of information about space and elements just from books I read.

When I was little, I liked to spin toys. I liked to run and follow the lines on the floor. I didn’t know how to play with others, but I learned to read when I was 2.

That is why I am raising awareness about autism and asking kids and teachers for $2 donations. The money will go to Canucks Autism Network. This organization helps kids and their families participate in programs in supportive environments. They also provide training in communities across BC.

I have benefited from their programs – I’ve participated in swimming, gymnastics, soccer, camp and family festivals. I would like to give back to them so more kids like me can have opportunities to learn and experience new things.

I also want to raise acceptance about autism. I want people to understand that if they see someone who is doing something that is unexpected, like flapping their arms — this is called stimming — or talking about the same thing over and over, there is nothing wrong with them.

Those with autism are just like anybody. We just think and do things differently. And we want to have friends too.

Thank you to everyone who donated! Thank you to CAN, who provided help for me. And most of all, thank you to my Mum and Dad.

As a young self-advocate, Jack has already educated hundreds of kids about inclusion, acceptance and support.

With young men like Jack leading the way, the future is so, so bright!

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At the 2019 Canucks Alumni Charity Golf Tournament, Sylvain Formo delivered this speech in front of a room of former NHL players, tournament participants and guests.

My name is Sylvain Formo and I am 23 years old. I’ve been a member of Canucks Autism Network (CAN) since it was founded in 2008. During that time, they have completely changed my thoughts about having autism. And what a person with autism can do in their community.

Growing up was difficult. When I was younger, I had problems talking and being understood by others. Except for my mom, who always knew what was going on. At school, I struggled the most, where social interactions and speech were the most important.

But I always loved hockey and goaltender was my favourite position growing up. It was hard to participate in sports too. I seemed to learn and interact with my teammates a little differently. In a dressing room of 20 or more people, I never really knew how to talk to the other players.

Then in 2014, Canucks Autism Network started a hockey program — the Vancouver Orcas. The difference was huge in the support I received. There were more than 20 staff and volunteers with us. And they understood everything we were going through.

Sylvain (goalie; third from right in back row) on CAN’s inaugural hockey team in 2014.

At 18, I aged out of the program. And as CAN didn’t have an adult program yet, they asked me to volunteer. That is when I found my calling to be a goalie coach.

Learn more about volunteering with Canucks Autism Network

At first, it was just a way to stay involved with the team and be with the guys that I liked playing with. It was challenging. I wasn’t sure how to support these guys that once were my teammates.

But just like when I was a participant, the staff and volunteers carried me along. They gradually gave me the responsibility to lead activities, like team stretches and other drills.

I began to work with the Vancouver team’s goalie. Then, two goalies. I began helping out at the Surrey location a little bit too. After each practice, I started doing my own research on goalie drills through the Hockey Canada, USA Hockey and Finland Hockey websites.

Sylvain instructs one of the Vancouver Orcas’ goalies during a CAN hockey scrimmage at Rogers Arena

After a couple years as a volunteer, one of the CAN staff approached me and said, “You know you’re doing the job of a staff member now? Working one on one with the kids and developing lesson plans?”

This encouraged me to think of the possibilities. CAN offered me a position as goalie coach in the hockey program. And this past April, I just completed my second full season as a a staff member.

From participant to volunteer to staff, my involvement with Canucks Autism Network has changed my life profoundly. They have supported and encouraged me for over a decade and have pushed me to strive for greater things and better things in my life.

With every CAN program I participated in, volunteered in or worked at, I have learned more about myself. I have gained skills that have carried me forward not only in my employment with CAN, but into my personal life.

CAN has changed my attitude towards the goals I had set for myself. They have given me a newfound sense of confidence that anything is possible. And for that, I am eternally grateful.

But there are so many other kids, teens and young adults who need the continued support of CAN programs. In BC, 1 in 46 children have autism. That is over 16,000 children province-wide.

With your support, you can help us grow our programs and reach out to the autism community. You can help Canucks Autism Network impact lives, like they did for me.

Changes Made to Program Offerings

In direct response to the voices of our members, Canucks Autism Network reached out to community partners to develop new opportunities throughout the 2018-19 program year.

In Surrey, we connected with Avia Employment Services and WorkBC to host two resumé building workshops. Participants made valuable first contact with two employment services, created or improved their resumes, and learned about how to access further services as needed.

Six youth and young adults work in pairs at computer cubicles — CAN and WorkBC staff work with youth & adult members to build their resumes.

CAN’s Explore Volunteering program continued to provide the opportunities our members had requested in our meetings — to gain volunteer experience, work skills, communication and social skills and to sample job opportunities.

Every Saturday morning, participants visited community organizations like Rogers Arena, Vancouver International Airport and Science World. Participants practiced their skills with a range of tasks, including food and beverage services, customer service, administrative work, custodial duties, and gardening.

In addition to work skills, the program also addressed member interest in developing interpersonal skills at work. “I’ve discovered that I’m more capable and compatible with others than I thought,” Brayden shared after volunteering in the Union Gospel Mission (UGM)’s thrift store this past April.

A male young adult organizes a clothing rack at a thrift store — Read more about Brayden’s experience volunteering with UGM through CAN.

To diversify job sampling opportunities, CAN reached out and secured an opportunity for participants to explore trades. Tradeworks hosted a session for our members to learn basic woodworking skills this past September.

In addition to these employment-focused events and programs, CAN added more opportunities focused on mental health. These have included a mindfulness and yoga session and an intro to cooking class in collaboration with Coast Mental Health in Vancouver.

Finally, to address requests for support accessing public transportation, CAN has initiated conversations with BC Transit and Translink. We are currently in the process of developing transit accessibility events in Vancouver and Victoria.

There are still many more exciting program options to explore! During the process of sampling new programs this past year, the CAN team and its Leadership group members have decided on new areas of focus for youth and adult programs:

Social and life skills
Employment and volunteering skills
Physical and mental health
Arts and technology

Youth and Adult Members as Leaders and Advocates

In addition to new programming spearheaded by our members’ suggestions, the CAN team has been proud to support many of our youth and adult leaders in positions of leadership and advocacy.

Last fall, CAN member Sylvain shared his story with the Presidents Group about finding a successful inclusive employment placement with CAN. In total, we currently employ 12 individuals on the autism spectrum across our programs and events. Meanwhile, an additional 42 are giving back as volunteers.

In the community, CAN members Keara, Kayla, Tyell and Tilman have represented the organization at various events hosted by partnering organizations. They have promoted the inclusion of autistic adults in various community spaces at events with the City of Surrey, Vancouver Opera and MEC.

A male and two female young adults at an info table — Tilman (left) with CAN and Power To Be staff members at a MEC rock climbing event.

Kayla (left) and Keara (2nd from right) joined our office staff to represent CAN at the Vancouver Opera’s first-ever relaxed performance this past spring.

As CAN members continue to grow their education, experience and skill set, it is our hope that many more will begin to apply for positions with the organization. We are so excited to see the diversity of our team continue to grow as representation of individuals across the spectrum increases in leadership positions at CAN.

We can’t wait to engage with our members to do more to make our communities more inclusive.

Next Steps

To all our CAN members aged 13+ — if you are interested in getting involved in CAN leadership or community advocacy, we want to hear from you!

For those in the Lower Mainland, our next CAN Youth Leadership Committee Meeting is scheduled for Wednesday, June 19 from 6:00-7:30pm at the CAN office (1788 West 8^th Ave, Vancouver). CAN members can RSVP online or email sarah.armstrong@canucksautism.ca for more details.

For those in our Vancouver Island, Kelowna or Kamloops regions, please get in touch with us for ways to get involved. Email sarah.amrstrong@canucksautism.ca.

We look forward to hearing from you!

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May 22, 2019

Terri Neish has been a CAN mother since 2010. In front of a room of 200+ guests, she delivered the following speech at the ICONNBC Shine A Light Gala in support of CAN (River Rock Casino in April 2019).

***

My name is Terri Neish. My husband and I have a son and a daughter, both of whom have multiple diagnoses. My oldest, Ayden, is 13 years old and he has autism.

Our journey has included countless struggles. But because of generous donors who give to Canucks Autism Network (CAN), it has also included incredible triumphs.

We welcomed Ayden as a baby boy in May 2005. He was so perfect and beautiful. Like any new parents, we experienced sleepless nights and feeding struggles. But as time went on, we encountered some really unique challenges.

By 18 months, Ayden had just barely started crawling and spoke just half of a word — “wa-wa”, for water. As he continued to grow, he still couldn’t speak to us and would rather scream in frustration for all his needs. To this day, he still cannot truly tell us what he’s thinking.

After a long process in the public system, we received Ayden’s autism diagnosis just before he turned five.

With the diagnosis came a thick folder of instructions on accessing resources. We had so many dreams and desires for Ayden. Peer interactions. Social and physical development. The joy of sports that every child should have and is entitled to.

But we encountered so many organizations that turned Ayden away. I will never forget the day his pre-school asked him not to come back until they could find more support. He wasn’t violent. Believe me. He just wasn’t attentive.

In addition to autism, Ayden also ended up being diagnosed with Tourettes, sensory processing disorder and severe ADHD. He needed a lot of support in order to participate in the same things that a typical child could. But he deserved to experience the same joy that other children could.

It was overwhelming. I felt scared and completely alone.

Then our government case worker came along. She sat with us and passionately recommended Canucks Autism Network.

Her words exactly: “You HAVE to register Ayden for their programs.”

When the day came for Ayden’s first soccer session, I honestly don’t know who was more nervous. Him or me. I went through all the same fears that I had with other organizations that we had enrolled Ayden in.

“Are they going to accept him? What if they can’t support him? Are they going to turn us away too?”

But when our nervous little Ayden walked into the gym that first day, his world – our world – forever changed. He saw a group of children just like him on every level. He saw compassionate volunteers and trained coaches who could be assigned for just him — one on one.

When Ayden gets anxious, he flaps his arms or puts his hand to his mouth to rub his lips. He won’t make eye contact. As a young child, he would never go outside without this one specific hat and a fuzzy little bracelet. They were almost like his security blanket for whenever he was feeling uneasy.

These traits might seem strange to others, but the staff and volunteers at Canucks Autism Network accepted him for who he was. No judgement. Just unconditional inclusion.

Within five minutes of his first session, you could see his whole body language change. He wasn’t timid. He wasn’t flapping his arms as much. He wasn’t putting his hand up to his mouth. He took off that hat and bracelet.

For the first time, we truly saw our special guy open up and be comfortable with himself. Ayden went from an anxious little boy who would rarely tell us how he felt – to literally bouncing from excitement and talking about how fun CAN was.

I still lose my breath out of the pure joy of seeing him like that. You could see it so clearly on his face.

That unbelievable experience on the first day has been the same each and every session at CAN. For the past 9 years, Ayden has learned to swim, bike and play basketball.

CAN programs have opened up so many possibilities when so many others told us they didn’t have the resources or the time.

Learn more about CAN sports and rec programs.

Ayden goes beyond his boundaries and commits to the people who work there because he truly trusts them. The staff and volunteers at CAN have become real life superheroes in his eyes. They empower each child to accomplish so much more than anyone thinks they can. They have shown me what Ayden is capable of.

Because they taught him to swim, we can now go to the lake in the summer and we don’t have to be afraid that he will wander and drown.

Canucks Autism Network has become a pillar of strength, comfort and acceptance for us. Because of CAN, Ayden has made some of his best childhood memories with them. His bedroom is covered with photos of him at CAN summer camps. And all the medals that he’s received in their sports programs.

I don’t know where we would be without Canucks Autism Network. The variety of programs, the level of support and the consistency of quality – there are no other programs out there like CAN. Period. There just aren’t.

Now when I encounter new families who are also struggling with autism, I tell them just as passionately and urgently as our case worker did nine years ago. “You HAVE to register for CAN.”

I have personally paid for other families’ $25 memberships because I want them to experience what we had — and that we still have to this day.

Learn more about CAN membership,

Today, Ayden is more confident. On the verge of entering Grade 8, he is more social. He is happier. Ayden would not be the person he is today if not for Canucks Autism Network.

But there are still so many families like mine that need support. Approximately 1 in 46 children is diagnosed in BC. Ayden is one of over 16,000 children and youth with autism province-wide that need your support.

My most heartfelt thanks to all those who support Canucks Autism Network. Because of you, CAN will continue to make a lasting impact on the lives of families like ours.

On every level of my gratitude — thank you.

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Kerry and her husband Ryan have a son with autism and a younger daughter. Last month, her family participated in the 5th Annual CAN & YVR Autism Accessibility Tour.

Held on April 18, the tour is offered to decrease anxiety often associated with air travel. Individuals and families with autism were invited to familiarize themselves with the pre-flight process, including check-in, security, finding their gate and boarding a plane.

In addition to the tour, each individual with autism was given a YVR Resource Kit, which features an activity storybook, step-by-step checklist, airport map, tips for travel and a tote bag to carry each item.

By increasing expectations and providing a simulated airport experience, the goal of the annual event is to build confidence for future travel.

It was Kerry’s first time at a Canucks Autism Network event. That same night, she shared this feedback with us:

***

Yesterday night, I was front-loading my oldest for the tour. He announced: “I don’t want to do it. But I’m ready to do it. I will use my courage.”

To prep himself on the way there, he requested that we play “Brave” by Sara Bareilles on repeat.

With his visual schedule in hand, he put that song into action at the airport—conquering check-in and security. He fearlessly filed onto the Air Transat Airbus A330, filled with families just like ours.

Travelers with autism can obtain the YVR Resource Kit, including the Activity Storybook (pictured above), at any YVR info desk.

The beautiful thing about this whole experience was that it provided a safe place for nervous fliers and their supporters to just be, without apology.

Meltdowns, earmuffs, iPads, fidgets, and endless questions about every step—it was all okay. There were no dirty looks or hurry-ups, because everybody there just “got it.”

To be honest though—when I signed up for this event, I was thinking mostly of myself. I wanted to have a picture of what traveling with a child who is fearful of crowds, machines, noise, and new things would look like.

And I left with not only that, but also with this sense of feeling deeply loved by countless kind strangers. To the service agents, security and customs officers, airport volunteers, flight attendants, and to the many, many genuinely smiley helpers sporting Canucks Autism Network t-shirts—why do you care about my family so much?

The tour also included an opportunity to sample the YVR Customs Declaration kiosks.

This week, spectrum-related struggles had me feeling extra lost & lonely, and ready to resign from this parenting gig. Tonight felt like the gigantic hug I needed. Thank you Canucks Autism Network and YVR for allowing me and my family to feel seen & safe.

***

We launched this program with YVR in 2014, because we had individuals and families with autism like Kerry’s in mind. Air travel can be a significant challenge for those on the spectrum who have anxiety or sensory sensitivities. But with the correct supports in place, they can accomplish so much.

We have always recognized that the entire family that shares the struggles and successes of an individual with autism. That’s why the tour allowed for the entire immediate family to join in on the experience.

Kerry’s husband & daughter were also able to experience the entire CAN & YVR Autism Accessibility Tour.

The larger the community of support, the better we can all support those on the spectrum. In addition to YVR, this year’s tour was also made possible by collaborations with Air Transat, Canadian Air Transit Security Authority (CATSA), Canada Border Services Agency (CBSA) and US Customs & Border Protection (CBP).

Author: harold

“My son was not coping at all. I thought there had to be a sensory zone somewhere,” Julia shared with us after the event. “Sure enough, I see the CAN tent. And inside is a table of noise-cancelling headphones amongst all sorts of fidgets and sensory gear.”

More CAN stories

“There was nothing else for her,” Anne said. “There was nowhere for her to go and feel accepted.”

The next day, they contacted our office to make an astounding donation of $30,000.

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Changes Made to Program Offerings

Youth and Adult Members as Leaders and Advocates

Next Steps

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