Arne: Volunteer turned life-long friend

In 1985, when Arne saw an ad in the paper calling for volunteers to be a friend to an individual with disabilities in the community, he said to himself “I can do that.” ABLE2, then known as Citizen Advocacy of Ottawa, matched him with Norman, a person with a disability who shared similar interests with him. Who knew that that journey would last nearly four decades, showcasing the profound impact one dedicated volunteer can have on another’s life? Arne, now ABLE2’s longest-serving volunteer, has not only been a steadfast advocate and Ally to his Friend Norm but also a friend he can rely on and stand with through life’s challenges.

Their friendship started with a simple offer: “You can call me anytime you need to talk,” Arne told Norman. It was an open invitation that laid the foundation for a bond built on trust and understanding. Through the years, Arne offered much more than friendship; he opened the door for Norm to engage in the community, create connections and relationships, and embrace life beyond the confines of his home.

On one of their more memorable outings, Arne suggested a two-person kayak trip, hoping it would be a therapeutic escape for Norman. As they drove towards the park, Norman began to feel uneasy about the trip. Unsure of how to handle the situation, Arne stopped the car on a bridge and gently eased his concerns. The day turned into a beautiful experience of paddling, swimming, and sharing a meal on an island.

This outing was just one of many ways Arne helped Norman navigate his emotions. Whether it was a walk by the river, listening to meditation tapes, or simply enjoying a meal together, Arne was always there, providing Norman with the support he needed. Norman even had a room at Arne’s place, a safe space where he could retreat whenever life became overwhelming.

Despite the challenges, especially through the pandemic, Arne was steadfast in his commitment to his friend. He continued to check in on him, reminding him of the importance of staying active and engaged. Arne’s reflection on their relationship reveals a deep appreciation for the inspiration that Norman is to him and a profound appreciation of their bond. “Norman is a fantastic person. He did volunteer work too. When I met him, he wanted to do a couple of things… He wanted to leave his parents’ place, he wanted to find a place of his own, he wanted to work… And he achieved most of it. Norman is the kindest person you can imagine.”

When asked why he continues to be a volunteer Ally with ABLE2, Arne says “It’s very easy. [Volunteers] don’t have to change their life. They can continue living the way they do. They don’t have to work in a miracle, either. They just need to be a friend. And that’s something we all need, and most of us can be friends.”

Last April 20, 2024, Arne was awarded at the Volunteer Appreciation Event “Impacting Lives Together” for being the longest-serving volunteer of ABLE2.

Arne’s story is proof of the transformative power of compassion through volunteerism. Volunteers like Arne empower people with disabilities to develop meaningful connections, have opportunities to engage and be active members of the community, and ultimately lead fulfilling lives. Through his commitment to his Friend, Norman, we continue to witness the incredible difference one person can make in another’s life simply by being a consistent and caring friend. Arne embodies the essence of ABLE2’s mission of empowering people with disabilities to build lives of meaning and joy.

As ABLE2 celebrates its 50th anniversary, we are inspired by Arne’s compassion, empathy, and commitment. Many more individuals like Norman are waiting for their Allies. By becoming a volunteer, you, too, can make a significant difference in someone’s life, just as Arne has done for Norman. In a world that often moves too fast, sometimes, all it takes to change a life is to be there, to listen, and to care.

Michael overcomes Agoraphobia with his Ally, Mike

In the vast expanse of an arena, amidst the roar of over 17,000 hockey fans, Michael experienced something extraordinary. For someone who had spent much of his life confined within his home due to agoraphobia or fear of open and crowded spaces, attending a live Sens game was a monumental step towards recovery. Michael attributes his renewed confidence and trust to his dedicated Ally, Mike, and the support from ABLE2’s Matching Program.

Michael shared his remarkable experience just days after attending his first Ottawa Senators game with his Ally Mike, made possible by ABLE2’s donors. “I had a wonderful time at Canadian Tire Centre. I have never been in a place with so many people, but my Match kept me calm, and we stayed the whole time.”

Michael has lived with agoraphobia, mental and physical health issues, and has struggled with developing social connections and isolation. “People often come and go in just a blur to me, not knowing who they were or what they came for,” shares Michael about having limited interactions with other people in the community. Health Links then connected Michael to ABLE2 and signed him up for the Matching Program. “I was skeptical that they would be able to help someone like me, or find me a match that would be compatible, but I decided to take one step to recovery at a time,” says Michael.

In the middle of the pandemic, ABLE2 called and said they had a Match for Michael. But with the lockdown restrictions in place, Michael and Mike were only able to connect over Zoom calls. As months progressed and restrictions were lifted, Mike would visit Michael at his home. Mike would encourage him to go for a walk for a few minutes outside, which turned into a quick coffee stop, and eventually a trip to the mall. “We tried to increase what I could do; go to a coffee shop, then the mall, and even Costco, which pushed my limits to the extreme,” says Michael. Little by little, Mike would encourage Michael to go on outings for longer periods and promoting physical activities to strengthen his legs and back. Michael slowly gained confidence and comfort in being in the community and experienced the recovery and transformation that this friendship encouraged.

On that day in March, the Ottawa Senators may have lost, but the biggest winner was Michael. He overcame the anxiety, the overwhelming noise, music, the number of people; something he never thought he would be able to do. “In the last 12 years, I’ve seen only a handful of people. Sometimes months would go by when I haven’t spoken a word to anyone. I am thrilled to see my accomplishments – how far I’ve come on my journey with the help of ABLE2 and Mike.”

Michael’s newfound confidence and trust are a result of the meaningful connection and friendship he has built with Mike. Reflecting on this journey, Michael has expressed profound gratitude for Mike. “I was amazed and had so many better experiences. Looking forward to more outings if opportunities present themselves again. Thanks to my match, I’m getting healthier and better with each event he’s taken me on. I still can’t believe it – over 17,000 people in the arena and I didn’t have a panic attack. Thank you again to my match for his time to volunteer and becoming a great friend helping me overcome agoraphobia.”

Michael’s story is a testament to the impact of ABLE2’s Matching Program. It shows the transformative power of compassion and dedication in helping others overcome their challenges and lead fulfilling lives. Dedicated volunteers like Mike prove that just being there, showing up, and being a friend can make an incredible difference in another’s life.

Finally, Michael describes his Ally Mike as his Hero: “Not all heroes wear capes. A hero to me is someone who can show up no matter the outcome, and still, they come and can be counted on and trusted to do the right thing. I hold Mike in the highest regard. It’s not easy to deal with someone like me. Each and every day, I strive to be like him, to be a positive and giving person.”

Dennis Blenkin

(Dennis Blenkin (second from left) and his Golden Book Tribute, with ABLE2 Executive Director Heather Lacey (on the left), Cathy Hall, and ABLE2 Founder David Hall) 

Dennis Blenkin

We featured Dennis in our 2016 Annual Report and were delighted to learn about his recent award by the Y’s Men International. 

In May 2024, Dennis was recognized for the positive impact he has made in the Y’s Men International communities. He received a Golden Book Tribute, which is a record for posterity of the “Golden Deeds” of Y’s Men. The Golden Book is housed in Geneva, Switzerland. Congratulations Dennis! 

For ABLE2, Dennis Blenkin exemplifies the goals of the Matching Program; he is someone who with support, has led an independent life of meaning and joy.

In 1974, Dennis was one of the first Friends to be matched to a volunteer Ally. In fact, Dennis, along with another young man, was the catalyst for the formation of ABLE2, at that time known as Citizen Advocacy. Dennis and his match were together for many years and his Ally supported him through many life changes such as finding a new place to live, a job and getting married to the love of his life, Cathy. 

However, life has a funny way of flipping things around. Back in 2016, it was Dennis who was visiting his former Ally. At that time, John had been in a nursing home for 10 years and Dennis was one of only two visitors he had each week. To Dennis these visits were a completely natural thing for him to do; John supported him when he needed someone and when John was the person in need, Dennis was his support.

Sadly, Dennis’ wife, Cathy, died about twelve years ago but the now-retired Dennis has been matched again to a new Ally, Peter, since 2020. 

David Hall: A Lifetime of Service

David Hall at Evening in the Maritimes on May 1st 2024 – Photo by Caroline Phillips

(Story published in the 2013 Annual Report)

David Hall is a life-long community activist. For more than 50 years, this self-described “shy man who likes to stay involved,” has rallied, inspired and organized volunteers to lend a hand in their community. At least three Ottawa-based organizations, most notably ABLE2 (formerly Citizen Advocacy of Ottawa), have David Hall to thank for their creation. At age 75, he’s now working on a fourth.

When he first moved to Ottawa from P.E.I. in the late 60s, he saw a need to rebuild the local brand of the Y-affiliated Service Club. In search of a cause around which he could mobilize support, he didn’t need to look further than where he was working at the time, the Silver Springs Farm Agricultural Training Program.

Two young participants in Hall’s agricultural training program were residents of the home for the intellectually impaired located across the road. They approached Hall to ask for his help leaving the residence. With the support of volunteers willing to raise the fund required, and the commitment of a dedicated advocate, Edgar Quellette, the two young men went on to lead happy, independent lives. And Citizen Advocacy of Ottawa (CAO) was born. 

After a couple for years selling Christmas trees and raising enough funds to support several other successful matches, CAO received a provincial grant. With that funding, Hall’s group hired one part-time employee and increased the number of matches made from fewer than five to more than twelve. By 1974, CAO could afford full-time staff and was established officially as a charitable agency. 

“Community outreach has always been a big part of my life,” says Hall. Recipient of a national community building award in 1986, Hall isn’t slowing down. He’s in the process of mobilizing support for a new program modeled after CAO— this one, for vulnerable people living in poverty. Asked what keeps him motivated, Hall replies that it’s all about “cutting through the isolation, loneliness and feeling people have that no one cares about them.” At the end of the day, says Hall, “We’re all equal.”

In May of 2024, United Way East Ontario awarded David Hall, founder of ABLE2 the Community Builder Award! The organization recognized David’s dedication to community-building efforts, and empowering vulnerable members of the community! 

Congratulations, David!

My EiTM24 Experience by Stacey Bielaski

Music, Lobster, and East Coast vibes in the Capital; Evening in the Maritimes 2024 (EiTM24) was so much fun. It was my third time attending; what a night for an incredible fundraising event for ABLE2!

When I got to the event, I checked out the Silent Auction items and had a complimentary drink to start off the night. Then I found my table in one of the East Coast province’s sections.. 

When the program began, there were East Coast province flags and bagpipes playing. The auctioneer did an amazing job getting the tables engaged with dream-of-a-lifetime trips you wouldn’t believe could be possible. We had a special host, Graham Richardson from CTV Ottawa Evening News. There were two people in ABLE2’s Matching Program who shared about how this program is very important to them. I enjoyed every moment, especially the food, during the event. 

If you are able to come to EiTM 2025, you should. This fundraiser event is for a good cause for people with disabilities. 

Stacey is a Program User, the chair of the Consumer Advisory Committee (CAC) and Board Member of ABLE2. 

A chat with Maelle and Karlene: If you smell what the Rock cooking

I was looking forward to my chat with Maelle and Karlene, a somewhat recently established friendship formed through ABLE2’s matching program. We were to meet at a local Subway, a location that I understood held meaning for the pair as it was where they first met some 6 months or so ago.  

As I opened the front door, after being hit with a waft of the all too familiar Subway fresh bread smell, I scanned the room. I was not sure what they looked like, but I made my best guess and mumbled in their direction “Karlene and Maelle?” Seeing their responsive smiles, I knew I found them. 

My first impression: they looked natural and comfortable with each other, just two human beings sitting for a sandwich on an otherwise unremarkable late Sunday afternoon. 

With introductions out of the way, I got right into it. I asked Maelle what compelled her to get involved with ABLE2. With a smile, she described her busy professional life as a high school vice principal but that she had recently taken on revised duties that gave her a bit more time and flexibility in her life. She knew she wanted to make a difference in someone’s life, and ABLE2’s matching program stood out as a chance to have direct, meaningful and personal experience based on a one-on-one connection. 

I asked them both what they liked to do together. Karlene chimed in first: watching movies, going for coffee / tea, and having lunch.  Recognizing that it will be their first summer together as a match, she also added that she is very much looking forward to having a picnic. Maelle clarified that their friendship is very much a two-way situation. They love to laugh and talk things out, about everything and nothing at the same time – all of the small and big things that make up life. In referencing my own match, I mentioned that after a while such relationships can become just like family. Karlene nodded in agreement: “She is like my grand-daughter!”.   

The conversation flowed as I uncovered more about both of them. In addition to her duties as vice principle, Maelle is an avid camper and loves dogs (she has a Rottweiler rescue and a dachshund). Karlene is a retired hairdresser and loves Reggae music and dancing. 

On to the most controversial topic we covered, Karlene mentioned how much she is looking forward to seeing the new Bob Marley biopic, and I responded that I recently took in the Barbie film and was surprised at how much I enjoyed it. To my dismay, Karlene did not share my positive review – at all. Perhaps flustered by this friendly disagreement, or perhaps in a vain attempt to justify my opinion, I then started to gush about Ryan Gosling. I did not expect that.

Moving along, we ended up talking about what a great job ABLE2 does in matching people and in this context, Maelle described how quickly they clicked together, referencing the fact that Karleen was dancing the first time she saw her – what a first impression! 

The most surprising part of the conversation was finding out that Karlene likes pro-wrestling. We had a nice laugh as we almost simultaneously quoted the famous tagline of the former wrestler turned movie star, Dwayne “the Rock”: Johnson: “If you smeeellllllll what the Rock is cooking!!!”. While it is true that I never know to expect when I sit for these chats with ABLE2 matches, I can say with absolute certainty that I did not expect to reminisce about the late 1990s pro-wrestling scene. 

As our chat began to wind down, I asked my usual concluding question: what would you say to someone considering getting involved in ABLE2? 

Karlene was quick with her response:  Just go for it – you won’t regret it, especially if you get a match like mine – she is a dream friend! Maelle added that even though people may seem different on the outside there are always opportunities to connect and find common ground (like pro wrestling!). 

This confirmed (again) to me that differences in people are often superficial. All you need is an open heart, and to spend a bit of time shooting the breeze about the mundane, day-to-day things that make up life.   What a boring world it would be if only people that were the same could be friends. 

And with that, our conversation wrapped up.  It my pleasure a to get to know Karlene and Maelle, and I look forward to seeing them at various ABLE2 events. 

Get to know ABLE2’s CAC Members: Stacey Bielaski (CAC Profile)

ABLE2’s Consumer Advisory Committee (CAC) was organized in 1991 in an effort to provide client-centered input to the board, that represents the interests of people living with disabilities. The committee also engages in opportunities for its members to be involved in ABLE2’s advocacy work. Currently sitting as Chair is Stacey Bielaski, a long-time program beneficiary and supporter of ABLE2, and an inspiring force to be reckoned with. 

Stacey, who grew up in Barrie, Ontario, was discovered to have a learning disability when she was in grade 1. Her parents enrolled her in a school that offered special education, where she was able to successfully learn how to read and write. However, that was cut short as their family moved to Ottawa Valley, and Stacey was enrolled in a public school where special Education was inclusive. She had mixed experience in the public school system; in high school, Stacey was able to take classes she was interested in and had some freedom to enjoy learning activities. When her family moved again, the new school she was placed in no longer offered the same freedom. She was not able to take classes she was interested in, and her year in grade 9 from the previous year was not credited, so she repeated the grade again when she should have been in grade 10. Stacey says, “I am glad we have a special education system, but I think they need to work better in the school system.” From her experience, she felt that her educators did not see her potential and was disengaged with the kind of treatment she received from her school. “Students in the special education [program should be seen] as people that have [abilities] to learn, and grow into incredible, smart, valuable members of society. We deserve education as much as the other students in the school system,” says Stacey.

Nevertheless, she overcame the challenges, and “…pushed myself knowing that I could do it, [knowing that] people believed in me,” says Stacey. When she moved to Ottawa and changed to a different school once more, Stacey persevered and received her Highschool Diploma. 

“I wanted to prove them wrong; I believe that I can do anything I put my mind to do.”

When asked about the bigger challenges she has faced as someone living with a disability in the community, Stacey says, “People could be more understanding and respectful. Sometimes they don’t understand what I’m going through. I try to understand where they’re coming from as well.” She also encounters obstacles like learning a new bus route for work and trying to get to the right place on time, managing her finances and paying her bills on time, and eating healthier. 

Despite these, Stacey keeps an open mind and continues to overcome the hurdles, armed with a positive attitude and happy disposition. She joined the CAC in 2018 and has been involved with ABLE2’s programs since then. Stacey says that she is grateful for the chance to meet other people with disabilities who also want to make a difference in the community. She says that being involved with ABLE2’s work inspires her, as it is “an organization that makes a difference in people with disabilities, [and] see their value in our society,” says Stacey. She is proud to be part of the ABLE2 community, especially after being invited to the Senate of Canada, with Senator Chantal Petitclerc recognizing ABLE2’s work in her statement for International Day of Persons with Disabilities on November 30, 2023. 

A group of people posing for a photo

Description automatically generated

When asked why more people should get involved with ABLE2, Stacey says, “ABLE2 is a good organization. They want to help people with disabilities live their best lives.” 

Stacey’s dreams and aspirations include becoming a great leader. “[I’ve] always felt [that] I wanted to make a difference in other people with disabilities, showing that their lives are valuable. [I want to] make our voice [be] heard in the community. I am very passionate about [letting] other people with disabilities know that their voices matter, that they are valuable, and worthy of an incredible life,” says Stacey. She also looks forward to being independent, having her own place to call home, and getting a college diploma in Journalism. 

“I am excited for my future; the sky has no limit. I am looking forward to doing some college courses. Education is very important to me. I am realizing [that] I deserve and have a right to make my dreams come true,” says Stacey.

A Fireside Chat with the Walkers

By Rick Burns (as published in the January 2024 ABLE2 Monthly Moments Newsletter)

It was an unseasonably mild, late December afternoon as I was preparing to meet with David and Mary Walker to speak about their experiences with ABLE2. 

As I approached their front door, I was met by Mary’s welcoming, smiling face as she invited me into their warm, cozy home. The fireplace, the Christmas cards strewn about, the lights of their tree – a stark contrast to the otherwise grey, gloomy day outside. 

With quick introductions and formalities aside, David had already begun to pour us all a drink as we sat for our chat.  With such warm introductions, I was quickly at ease, which is not all that surprising considering that they had previously been described to me as “a dynamic duo” and “bright lights in our ABLE2 family”.  

As we took our first sips, Mary and David described their experiences with ABLE2 and what incented them to get involved over ten years go now. Without hesitation, they pointed to their Catholic faith and desire to be a positive, loving force in the world. Wanting to do good for others and the community, they began searching out volunteering opportunities online, eventually coming across ABLE2 and its matching program. Already fully employed, they were seeking something personal and rewarding – not something that would feel like a second job. They were immediately drawn to the idea of a personal, one-on-one experience to help someone in need – helping people just by showing up and being themselves, which is all that it usually takes to let an otherwise isolated member of the community know they are valued and not alone. 

As I came to learn, Mary had several matches and connections over the years.  She described her current match to Barbara, a woman in her 70s with an intellectual disability, who she sees every Sunday for an hour or so at her long-term care home.  Mary connects with Barbara through art; they like to colour together and then hang up their pictures on the wall to decorate and brighten up Barbara’s room. Without much family, Mary acts as Barbara’s lifeline to the outside world and helps get her out of her shell.  Although their conversations are limited sometimes, Mary has found that there is a relaxing, almost meditative aspect to making art side by side with someone without any pressure or expectations to entertain. The only real requirement for her is to be present and to share space and time doing an enjoyable activity.  She has discovered that there is something uniquely rewarding about having someone in your life that is truly and genuinely happy to see you each and every time without fail. 

David has been matched now with Sheldon, a man with a visual impairment, for the last 10 years and sees him on a weekly basis, noting that his Tuesday afternoons would not be the same without him! David helps Sheldon with things like shopping and banking, but mostly is there just to chat, listen and be present – as good friends do.  Over the course of their friendship, David has also become increasingly close with Sheldon’s extended family, who together act as invaluable pillars of support in his life.  Over the years, their relationship has evolved, from a friendship enabled by ABLE2 to a relationship that is more like family. David affectionately refers to Sheldon, who is now in his eighties, as his uncle. He also confirmed that even if ABLE2 ceased to exist tomorrow, they would still be a big part of each other’s lives – which is the ultimate testament to the power of the ABLE2’s matching program.  

As the interview (and my delicious beer) was coming to an end, I asked my standard concluding question: what would they say to someone who is considering getting involved in ABLE2? 

David pointed to the direct “pay off” one can receive in engaging in such a personal experience, getting to know someone else and seeing first-hand the difference one can make in someone’s life.  He underlined that there is no catch – only an opportunity to do a bit of good in the world. And, you may even be surprised that it will do as much good for them as it does for you!

Mary, nodding her head in agreement, was quick to point out how well-supported she felt by ABLE2 every step of the way, during of the matching process itself and afterwards once the relationship began.  While she understands why someone may feel apprehensive about getting involved and engaging in someone else’s life in this way, she referred to the caring and professional team at ABLE2 who are always there to offer support and advice every step of the way, no matter what challenge may come up as the relationship unfolds. 

The Walkers are such friendly, pleasant people and we are all better for having them as active members in the community.  There was no better way to enjoy the strange liminal time between Christmas and New Year’s than connecting with such good people over a drink and good conversation – I look forward to our paths crossing again! 

By Rick Burns

Caring for Joey’s “Zoo Crew” ABLE2 Brings Families Hope Through Its Fetal Alcohol Program

By Frank B. Edwards (as published in the November 2023 ABLE2 Monthly Moments Newsletter)

Joey Desormeaux lovingly calls his three kids “the Zoo Crew.” His Stittsville trio – Aidan, 12, and 7-year-old twins, Hunter and Lily – are well-known free spirits in the neighbourhood and at school.

Until a few years ago, Joey, a congenial 44-year-old nurse, assumed that the kids shared his own attention-deficit/hyperactivity disorder (ADHD). Certainly, they were loud, unruly, and given to emotional meltdowns. 

Joey recalls, “We knew something was up with their various early childhood milestones. They were slow to start talking and they had low reasoning skills. But they were hyper-accelerated at walking and running. At first it just seemed to be ADHD, but eventually we started thinking it could be a fetal alcohol disorder.”

Fetal alcohol spectrum disorder (FASD) is often mistaken for ADHD. So, when the children did not respond to typical treatment, their doctor referred them to the FASD team at Ottawa’s Children’s Hospital of Eastern Ontario (CHEO).

By then, Joey and the kids’ stepmother, Jamie, a healthcare worker, were convinced of FASD so they were relieved in early 2022 when CHEO staff made its “suspected FASD diagnosis” for Aidan and Hunter. Almost a year and a half later, in August 2023, the CHEO team confirmed FASD and began testing Lily. (She has exhibited fewer FASD behaviours than her brother and is doing math several grades ahead of her age.)

While alcoholic beverage bottles today carry warning labels about the dangers of drinking when pregnant, few people seem aware of how insidious FASD is – more than 1.5 million Canadians have been identified with the disorder. At 4% of the population, diagnosed FASD is more common than autism, cerebral palsy and Downs syndrome combined. 

Alcohol can disrupt fetal brain development which in turn causes a wide range of serious physical and intellectual disabilities. The syndrome affects everything from intellectual and social function to motor skills and memory. An 18-year-old with FASD might appear physically similar to their peers but have the life skills of an 11-year-old and the social maturity of a six-year-old.

After CHEO’s “suspected” FASD diagnosis in 2022, the Desormeaux family was referred to ABLE2’s Fetal Alcohol Resource Program (FARP) and within a month received support from a social worker to help them bring order to their household.

ABLE2 is an Ottawa non-profit group charitable organization that offers important supports to people with disabilities in the region. It is the only local organization helping families facing the challenges of FASD.

“The ABLE2 program recognized what we had been doing right,” says Joey. He and Jamie had already established the consistent routines important to their youngsters, but they still had a lot to learn. “The program helped us guide our own responses to situations.”

Today, the homes of many ABLE2 FASD clients are decorated with reminder signs and family schedules to help reinforce daily routines that are second nature to other families. Repetition and consistency help impulsive children who lack flexibility and have trouble understanding the intricacies of social norms.

This summer, Joey’s “crew” welcomed a new FASD support worker from ABLE2 — Donna Douglas, a child and youth counsellor with 16 client families in the Ottawa region. Her most recent home visit focused on helping the family establish a consistent morning routine so everyone could start their day on a more positive note. 

She also discussed how Joey and Jamie can deal with the frustration and constant pressure they face — and temper their own interactions with the kids. Listening to a typical exchange between parent and child, she observed an edge of adult sarcasm and reminded both Joey and Jamie to keep their corrective voices neutral. Joey jokes that he and Jamie are being coached on their “bad habits.”

“Yeah, we’re under the microscope now,” Joey laughs. “But the kids are ‘super feelers.’ They detect voice tones that we might not, along with a lot of other things.” 

“I said to Aidan, ‘Dude, what are you doing? You’re 12 years old, you should know better.’ But, of course, he doesn’t because of his neural pathways. We have to constantly remind ourselves about that.”

Even minute changes to routine can cause major problems, such as when a new brand of detergent created a laundry revolt. The kids refused to wear some of their clothes because they smelled and felt different. They were even convinced the clothes no longer fit properly.

In her job at ABLE2, Donna does a lot of educational outreach, with both families and their community, explaining just how sensitive FASD children are. Sights, smells, sounds, touch, and even tastes can trigger unexpected reactions.

“A taste as common as broccoli can be very upsetting. Or a bad smell,” she says. Part of her job is to work with teachers, explaining the nuances of FASD and helping them set reasonable expectations and develop strategies to achieve them.

Teachers, like parents, get upset when students repeatedly “misbehave” but “it’s because they don’t remember what they are supposed to do,” she explains. “They are slow to respond and have poor attention spans. You have to repeat something four times to them… and then say it a fifth time.”

“People have to reframe their perceptions of behaviour and move from a punishment mode to a supportive mode,” she says.

This school year, with the FASD diagnosis in hand, Joey is focussing on social and education impacts. “We’re putting things in place now that we know why they’re doing what they do. It’s a continual learning journey.” He explains the children’s FASD diagnosis is considered a physical disability, essentially a brain injury, that will make them eligible for more support within the classroom.

Working in health care, both Jamie and Joey had a head start on many FASD families because they had heard of the disorder before. And they both knew the children’s biological mother may have consumed alcohol during her pregnancies, something she confirmed with the CHEO team.

“She was absent from the time the twins were one,” says Joey. “But I’m proud of her admitting to drinking.” Such confirmation makes a FASD diagnosis easier, and it supports the children, but is a hard step for mothers to take.

“It carries a lot of stigma for mothers,” says Donna. Medical histories of absent birth mothers are difficult to assemble so the CHEO team must rely on adoption and social agency records to complete a developmental profile that starts at pregnancy. 

In her early client visits, either in person or on a video call, Donna gathers a child’s history before starting a conversation about the family’s goals and how she can help parents achieve them.

“FASD is very complex,” she says. “There are various levels of disability, and each child is different.”

Part of her job is to work with the changing expectations of parents and caregivers, helping them establish realistic goals, especially around emotional regulation at home, in public and in school. In September, she will be visiting Aidan’s and Hunter’s teachers to discuss the boys’ needs and find them supports. 

Part of her educational arsenal is a slide show on her laptop with which she can give a thorough overview of FASD – to parents, caregivers, and teachers – in less than an hour. It is a sobering lesson on the lifelong effects of even small amounts of alcohol on a fetus.

“The alcohol enters the fetus through the blood and dehydrates brain cells. Those cells are the building blocks of development,” she explains. “Alcohol affects different cells in a fetus, disrupting its proper development. 

“If a dehydrated cell dies, it can never do what it was supposed to do.” 

For example, alcohol consumption in the first 19-22 days of gestation — before a mother even knows she is pregnant – can result in the facial features commonly associated with FASD. Yet, the reduced eye openings, flat midface and smaller head characteristics are found in only about 3% of people diagnosed with FASD.

Joey remains upbeat about the challenges that lay ahead for his family.

“Luckily, they are the sweetest kids in the world. They have the biggest hearts. But everything in our day is a situation…”

Remembering how overwhelming life seemed before help arrived, Joey offers three pieces of advice to FASD parents.

“Place yourself first, mentally, emotionally, and physically. You can’t give care if you don’t care for yourself. You’ll become too exhausted and emotional.

“Don’t be afraid of labels. Don’t be ashamed. Shout out loud and proud: My kid is special.

“And build a good family and support network.”

Certainly, ABLE2 is a key part of the Desormeaux strategy. “Without ABLE2, people like us would be lost,” he says.

Adrian and his friend with great tastes in movies (John)

By Rick Burns as published in the September 2023 ABLE2 Monthly Moments Newsletter

It was a beautiful August day, sunny and warm, I was chalk full of the “Friday feels” – it was a perfect time for a casual lunch with my soon-to-be new friends, John and Adrian. 

I sat waiting for my two lunch companions in a corner booth, flipping through my phone, checking in on the Blue Jays, bit of the news, getting a handle on the latest celebrity scandal.  

I looked around, I knew who to look for as I had met Adrian and John before. I knew Adrian as a fellow board member of ABLE2, and I had the pleasure of meeting his friend John at last year’s Christmas party.

Then I heard it.  An excited voice sounded out my name “Rick Burrrrrnnnnsssss”.  Turning to my left, there they were.  What a great first impression of John.  It does not matter who, where, when or why – nothing feels better than being greeted by someone with such energy and enthusiasm.  

John and Adrian had barely settled into our booth before we jumped right into a delightful conversation. I had brought my notebook along with a set of pre-selected questions I could ask.  I had these alongside me for my own comfort in case the conversation lagged.…in case my chit-chatting skills would fail me. Alas, my old school pen and paper proved to be mostly unnecessary as the conversation flowed naturally and easy.  The lunch flew by, the real question here is what we didn’t talk about. 

First matched in 1999, I was so impressed with how Adrian was with John. It was nothing specific he did, just a comfortable, caring presence. He was not John’s caretaker, he was his dear friend. I was not surprised to learn later on in our conversation that John shares Christmas time and other holidays at Adrian’s place. With no immediate family in the Ottawa area, Adrian is John’s rock, his family. As the one consistent person in his life, Adian was a pillar of stability in helping John adjust to his move into his current assisted living residence. 

As the conversation flowed, it turns out Adrian and I had a lot in common, perhaps not surprising considering we have established long term friendships through ABLE’s matching program and are both members of the Board of Directors. 

What was surprising, however, is the commonalities I found with John. I learned so many interesting things about him. I heard about how he swam, hiked, and went to Bluesfest this summer. We both love coffee, but each of us has had to make at least a partial transition to decaf in the last few years (too much caffeine make us both spin like a top).  John was also born in Manhattan, arriving in Ottawa via Oshawa many years ago.  I don’t think I have ever met a real New Yorker before! 

I learned that John is a movie buff and I enjoyed hearing about his various tastes.  As he listed some his favorites, I could not believe what I heard: “Titanic”. 

Reader, of course you would not know this, but Titanic is in my tip five list of all time favourite movies and it has been recently been made available on Netflix.  Upon excitedly telling people in my social circles of this great news, I was disappointed to discover that it is not as popular as I once thought. My wife, nieces, friends, relatives – no one seems to be interested.  John – I am so glad I met someone else with such strong movie taste. I could not agree with you more – it is an all-time classic. 

Overall, the lunch was great, I really enjoyed getting to know Adian and John and I look forward to seeing them again. 

By Rick Burns