Catégorie : Our Stories FR

Jeff Snyder en compagnie de la nouvelle présidente de la SdlM, Danielle Demark, lors de la Soirée dans les Maritimes tenue le 1er mai 2024. Photo de Caroline Phillips

J’ai récemment eu la chance de discuter avec Jeff Snyder, un bénévole de longue date qui a toujours soutenu les activités d’ABLE2 et qui est connu spécialement pour ses nombreuses années de service en tant que président du comité organisateur de la Soirée dans les Maritimes. Si vous ne le saviez pas déjà, le succès de l’événement de collecte de fonds d’ABLE2 est dû en grande partie au leadership dont Jeff a fait preuve au fil des ans. Avec lui à la barre, ABLE2 a collecté des millions de dollars pour aider les personnes de tous les âges, quel que soit le spectre de leur handicap, ainsi que leurs familles.

Alors que Jeff quitte son poste de président, notre conversation a été l’occasion de réfléchir à tous ses efforts et contributions au cours des deux dernières décennies. C’était également l’occasion pour moi – au nom de tous les membres de la communauté d’ABLE2 – de reconnaître et d’offrir nos remerciements collectifs pour son dévouement et son excellent travail au fil des années.

La première chose que j’ai demandée à Jeff, c’est comment il s’est impliqué pour la première fois à ABLE2 et ce qui l’a poussé à assumer ce rôle de leadership. Il a répondu que cela remonte à 1994, alors qu’il était récemment diplômé universitaire et s’est installé à Ottawa pour son premier véritable emploi d’adulte à 23 ans. Originaire d’Halifax, Jeff cherchait à établir des liens dans sa nouvelle ville, mais il ne connaissait pas beaucoup de monde ici, à l’exception de la petite amie d’un ami dont la mère travaillait comme travailleuse sociale à ABLE2 (connue à l’époque sous le nom de Citizen Advocacy). Il a ensuite été présenté à Brian Tardiff, le PDG et compatriote d’Haligonian – et le reste, comme on dit, appartient à l’histoire.

Redonner à la communauté est quelque chose que Jeff a toujours su qu’il voulait faire – c’est une valeur qui lui a été inculquée par ses parents tout au long de sa vie. Sachant à quel point le bénévolat peut être bénéfique pour se faire des amis et créer des liens, il a demandé à Brian comment il pourrait s’impliquer. Jeff a fini par s’inscrire au programme de jumelage d’ABLE2 et a été jumelé à quelqu’un qui n’était techniquement pas éligible au programme de jumelage (un jeune homme sans handicap mais avec une famille malentendante). Les deux hommes ont rapidement noué une solide amitié, puis, quelque temps plus tard, ils se sont tous deux jumelés et sont devenus amis avec une personne ayant un handicap. Un match d’amitié à trois réussi ! Mais comme nous le savons, la vie arrive. Jeff avait fondé une famille et avait constaté qu’il avait moins de temps à consacrer à un mariage formel. Il souhaite toutefois demeurer impliqué et se joint donc au comité organisateur de la Soirée dans les Maritimes et finit par le coprésider pendant 11 ans.

J’ai interrogé Jeff sur certains points forts, points faibles et leçons tirées de ses expériences dans ce rôle.

Voulant peut-être mettre cela de côté, Jeff a d’abord parlé d’une « faible luminosité » qui lui est venue à l’esprit, mais elle s’est également accompagnée d’une leçon importante apprise. Il a ensuite décrit l’année au cours de laquelle l’équipe de vente a fait de gros efforts et a fini par être victime de son propre succès, vendant de manière inattendue près de 900 billets. Jeff et le comité organisateur ont rapidement compris que des chiffres aussi élevés enlevaient quelque peu l’ambiance de fête sur la côte Est et dans les sous-sols des églises. Les chiffres ont donc été plafonnés pour les années à venir, la perte de revenus étant compensée par des éléments de collecte de fonds plus ciblés au sein de l’événement lui-même. (par exemple, enchères silencieuses).

Lorsqu’on lui a posé des questions sur les points forts, avec un sourire, Jeff n’a pas tardé à répondre qu’il y en avait trop pour les mentionner, faisant référence à toutes les personnes incroyables avec lesquelles il a eu l’occasion de travailler. Pour n’en nommer que quelques-uns, il a parlé de l’engagement et de l’enthousiasme des présidents d’honneur, du sénateur Vernon White, de l’homme d’affaires local David Cork, de l’ancien maire Bob Chiarelli, de l’ancien défenseur de la LNH et défenseur des personnes vivant avec des handicaps Jim Kyte et, plus récemment, de l’entrepreneur et comédien Michael Lifshitz.

Jeff Snyder avec la nouvelle présidente de l’SdlM, Danielle Demark, lors d’une soirée dans les Maritimes le 1er mai 2024. Photo par Ashley Fraser

Quant à sa partie préférée, Jeff a souligné sans hésitation la tradition selon laquelle un match réussi est profilé et interviewé lors de l’événement pour aider les participants à mieux comprendre l’impact que de tels matchs peuvent avoir. Jeff a noté que cette partie de l’événement a tendance à vraiment toucher les participants. Il a même vu quelques larmes au fil des années lorsque les gens ont appris à quel point ces matches peuvent être significatifs – les gens sont souvent surpris d’apprendre que ces amitiés sont dans les deux sens et peuvent profiter également aux deux parties.

Jeff et moi avons fini par discuter de l’efficacité du programme de jumelage d’ABLE2, de sa simplicité et de son efficacité. Comme pour toutes les amitiés, la chose la plus importante est de se présenter, d’être présent – ​​même s’il s’agit simplement de s’enregistrer pour avoir une conversation téléphonique rapide, ou peut-être que quelqu’un dans la communauté a besoin d’aide pour la plus petite des tâches, des choses que beaucoup d’entre nous pour acquis. Cela peut être aussi simple que d’aider à payer les factures, de commander ParaTranspo ou de faire du shopping – une aide aussi modeste peut faire toute la différence pour quelqu’un dans la communauté qui est autrement trop isolé.

Nous sommes tristes de voir Jeff quitter son poste de président du comité de la Soirée dans les Maritimes après toutes ces années, mais quel héritage à laisser derrière lui ! Au nom des employés d’ABLE2, des membres du conseil d’administration, des amis, des clients, des alliés – et de toute la ville d’Ottawa – merci Jeff !! La communauté vous sera éternellement redevable.

En 1985, lorsqu’Arne a vu une annonce dans le journal appelant des bénévoles à être un ami pour une personne handicapée dans la communauté, il s’est dit « Je peux le faire. » ABLE2, alors connu sous le nom de Citizen Advocacy of Ottawa, l’a mis en relation avec Norman, une personne handicapée partageant des intérêts similaires. Qui aurait pu imaginer que ce parcours durerait près de quatre décennies, démontrant l’impact profond qu’un bénévole dévoué peut avoir sur la vie d’une autre personne ? Arne, maintenant le bénévole le plus ancien d’ABLE2, a non seulement été un défenseur et un allié fidèle pour son ami Norm, mais aussi un ami sur qui il peut compter et avec qui il peut affronter les défis de la vie.

Leur amitié a commencé par une simple offre : « Tu peux m’appeler à tout moment si tu as besoin de parler », a dit Arne à Norman. C’était une invitation ouverte qui a jeté les bases d’un lien fondé sur la confiance et la compréhension. Au fil des ans, Arne a offert bien plus que de l’amitié ; il a ouvert la porte à Norm pour qu’il s’engage dans la communauté, crée des liens et des relations, et embrasse la vie au-delà des limites de sa maison.

Lors d’une de leurs sorties les plus mémorables, Arne a proposé un voyage en kayak à deux, espérant que ce serait une évasion thérapeutique pour Norman. En route vers le parc, Norman a commencé à se sentir mal à l’aise à l’idée du voyage. Ne sachant pas comment gérer la situation, Arne a arrêté la voiture sur un pont et a doucement apaisé ses inquiétudes. La journée s’est transformée en une belle expérience de navigation, de baignade et de partage d’un repas sur une île.

Cette sortie n’était qu’une des nombreuses façons dont Arne a aidé Norman à gérer ses émotions. Que ce soit une promenade au bord de la rivière, l’écoute de cassettes de méditation ou simplement le plaisir de partager un repas ensemble, Arne était toujours là, fournissant à Norman le soutien dont il avait besoin. Norman avait même une chambre chez Arne, un espace sûr où il pouvait se retirer lorsque la vie devenait trop accablante.

Malgré les défis, surtout pendant la pandémie, Arne est resté fidèle à son engagement envers son ami. Il continuait de prendre des nouvelles de lui, lui rappelant l’importance de rester actif et engagé. La réflexion d’Arne sur leur relation révèle une profonde appréciation pour l’inspiration que Norman lui apporte et une gratitude profonde pour leur lien. « Norman est une personne fantastique. Il faisait aussi du bénévolat. Quand je l’ai rencontré, il voulait faire quelques choses… Il voulait quitter la maison de ses parents, il voulait trouver un endroit à lui, il voulait travailler… Et il a réalisé la plupart de ses objectifs. Norman est la personne la plus gentille que l’on puisse imaginer. »

Lorsqu’on lui demande pourquoi il continue à être un allié bénévole avec ABLE2, Arne répond :

« C’est très simple. [Les bénévoles] n’ont pas besoin de changer leur vie. Ils peuvent continuer à vivre comme ils le font. Ils n’ont pas besoin de faire des miracles non plus. Ils ont juste besoin d’être un ami. Et c’est quelque chose dont nous avons tous besoin, et la plupart d’entre nous peuvent être amis. »

Le 20 avril 2024, Arne a été récompensé lors de l’événement de reconnaissance des bénévoles « Impacting Lives Together » pour être le bénévole le plus ancien d’ABLE2.

L’histoire d’Arne prouve le pouvoir transformateur de la compassion à travers le bénévolat. Les bénévoles comme Arne permettent aux personnes handicapées de développer des liens significatifs, d’avoir des opportunités de s’engager et d’être des membres actifs de la communauté, et finalement de mener des vies épanouies. Grâce à son engagement envers son ami Norman, nous continuons à être témoins de la différence incroyable qu’une personne peut faire dans la vie d’une autre simplement en étant un ami constant et attentionné. Arne incarne l’essence de la mission d’ABLE2, qui est d’aider les personnes handicapées à construire des vies significatives et joyeuses.

Alors qu’ABLE2 célèbre son 50e anniversaire, nous sommes inspirés par la compassion, l’empathie et l’engagement d’Arne. De nombreuses autres personnes comme Norman attendent leurs alliés. En devenant bénévole, vous pouvez également faire une différence significative dans la vie de quelqu’un, tout comme Arne l’a fait pour Norman. Dans un monde qui bouge souvent trop vite, parfois, tout ce qu’il faut pour changer une vie, c’est d’être là, d’écouter et de se soucier des autres.

Dans l’immensité d’une arène, au milieu des acclamations de plus de 17 000 fans de hockey, Michael a vécu quelque chose d’extraordinaire. Pour quelqu’un qui avait passé une grande partie de sa vie confiné chez lui en raison de l’agoraphobie, ou la peur des espaces ouverts et bondés, assister à un match en direct des Sens était une étape monumentale vers la guérison. Michael attribue sa confiance renouvelée et sa confiance en son Ally, Mike, et au soutien du programme de jumelage d’ABLE2.

Michael a partagé son expérience remarquable quelques jours après avoir assisté à son premier match des Sénateurs d’Ottawa avec son Ally Mike, rendu possible par les donateurs d’ABLE2. « J’ai passé un moment merveilleux au Centre Canadian Tire. Je n’ai jamais été dans un endroit avec autant de gens, mais mon Match m’a gardé calme, et nous sommes restés tout le temps. »

Michael a vécu avec l’agoraphobie, des problèmes de santé mentale et physique, et a eu du mal à développer des relations sociales et à lutter contre l’isolement. « Les gens viennent souvent et repartent sans que je sache qui ils étaient ou pourquoi ils étaient venus », partage Michael à propos de ses interactions limitées avec d’autres personnes dans la communauté. Health Links a ensuite connecté Michael à ABLE2 et l’a inscrit au programme de jumelage. « J’étais sceptique quant à leur capacité à aider quelqu’un comme moi, ou à trouver un match compatible, mais j’ai décidé de faire un pas vers la guérison à la fois », dit Michael.

Au milieu de la pandémie, ABLE2 a appelé et a dit qu’ils avaient un Match pour Michael. Mais avec les restrictions de confinement en place, Michael et Mike n’ont pu se connecter que par des appels Zoom. Au fil des mois et à mesure que les restrictions étaient levées, Mike rendait visite à Michael chez lui. Mike l’encourageait à faire une promenade de quelques minutes à l’extérieur, ce qui s’est transformé en un arrêt rapide pour un café, et finalement une sortie au centre commercial. « Nous avons essayé d’augmenter ce que je pouvais faire ; aller dans un café, puis au centre commercial, et même à Costco, ce qui a poussé mes limites à l’extrême », dit Michael. Petit à petit, Mike encourageait Michael à sortir plus longtemps et à promouvoir des activités physiques pour renforcer ses jambes et son dos. Michael a lentement gagné en confiance et en confort dans la communauté et a expérimenté la guérison et la transformation que cette amitié encourageait.

Ce jour de mars, les Sénateurs d’Ottawa ont peut-être perdu, mais le plus grand gagnant était Michael. Il a surmonté l’anxiété, le bruit écrasant, la musique, le nombre de personnes ; quelque chose qu’il n’aurait jamais cru possible. « Au cours des 12 dernières années, j’ai vu seulement une poignée de personnes. Parfois, des mois passaient sans que je ne parle à qui que ce soit. Je suis ravi de voir mes accomplissements – jusqu’où je suis arrivé dans mon parcours avec l’aide d’ABLE2 et de Mike. »

La confiance et la confiance renouvelées de Michael sont le résultat de la connexion significative et de l’amitié qu’il a bâties avec Mike. En réfléchissant à ce parcours, Michael a exprimé une profonde gratitude envers Mike. « J’étais étonné et j’ai eu tellement de meilleures expériences. J’attends avec impatience d’autres sorties si les opportunités se présentent à nouveau. Grâce à mon match, je deviens plus sain et meilleur à chaque événement auquel il m’emmène. Je ne peux toujours pas le croire – plus de 17 000 personnes dans l’arène et je n’ai pas eu de crise de panique. Merci encore à mon match pour son temps de bénévolat et pour devenir un grand ami m’aidant à surmonter l’agoraphobie. »

L’histoire de Michael est un témoignage de l’impact du programme de jumelage d’ABLE2. Elle montre le pouvoir transformateur de la compassion et du dévouement pour aider les autres à surmonter leurs défis et à mener une vie épanouie. Les bénévoles dévoués comme Mike prouvent que le simple fait d’être présent, de se montrer, et d’être un ami peut faire une différence incroyable dans la vie d’une autre personne.

Enfin, Michael décrit son Ally Mike comme son héros : « Tous les héros ne portent pas de capes. Un héros pour moi est quelqu’un qui peut se montrer, peu importe le résultat, et ils viennent toujours, peuvent être comptés et font ce qui est juste. Je tiens Mike en haute estime. Ce n’est pas facile de gérer quelqu’un comme moi. Chaque jour, je m’efforce de lui ressembler, d’être une personne positive et généreuse. »

(Dennis Blenkin (2^ème à partir de la gauche) et son hommage au Livre d’or, avec la directrice générale d’ABLE2 Heather Lacey (à gauche), Cathy Hall, et le fondateur d’ABLE2 David Hall) 

Dennis Blenkin

Nous avons présenté Dennis dans notre Rapport annuel de 2016 et avons été ravis d’apprendre qu’il a récemment reçu le prix décerné par le Y’s Men International. 

En mai 2024, Dennis a été reconnu pour son impact positif dans les communautés Y’s Men International. Il a reçu un hommage au Livre d’or, qui est un record de la postérité des « Golden Deeds » des hommes de Y. Le Livre d’or est hébergé à Genève, en Suisse. Félicitations Dennis!

Pour ABLE2, Dennis Blenkin constitue un exemple vivant des objectifs du programme de jumelage. Il est une personne qui a mené une vie indépendante pleine de sens et de joie, avec du soutien.

En 1974, Dennis a été l’un des premiers Amis à être jumelé à un allié bénévole. En fait, de concert avec un autre jeune homme, Dennis a été le catalyseur de la formation d’ABLE2, connu à l’époque sous le nom de Citizen Advocacy. Dennis et son partenaire ont été ensemble pendant de nombreuses années et son allié l’a soutenu à travers de nombreux changements de vie tels que trouver un nouvel endroit à vivre, trouver un emploi et se marier avec l’amour de sa vie, Cathy.

Cependant, la vie a une drôle de façon de renverser les choses. En 2016, Dennis était celui qui rendait visite à son ancien allié bénévole. À cette époque, John était dans une maison de retraite depuis 10 ans et Dennis était l’un des deux seuls visiteurs qu’il recevait chaque semaine. Pour Dennis, ces visites étaient une chose tout à fait naturelle pour lui. John l’a soutenu quand il avait besoin de quelqu’un et quand John était la personne dans le besoin, Dennis était son soutien.

Malheureusement, Cathy, la femme de Dennis, est décédée depuis douze ans, mais Dennis, maintenant à la retraite, est à nouveau jumelé à un nouveau bénévole allié nommé Peter depuis 2020.

David Hall at Evening in the Maritimes on May 1^st 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!

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. 

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.

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. 

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. 

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.

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