By Tracy Moisan, Supporter of loved ones with FASD, Program Director, FASD & Me: Strengthening My Community program with Adopt4Life

September 5, 2023

Life is often complicated, and it’s easy to feel like we’re going through the hard times alone. For individuals with Fetal Alcohol Spectrum Disorder (FASD), and their families and loved ones supporting them, life often means navigating unique challenges that can amplify feelings of isolation and disconnect.

Increasingly however, there is a recognition that peer support networks can spark hope, where the power in shared experiences shines through and environments are fostered where people with FASD and their families can find understanding and a profound sense of belonging.

I have seen first-hand the transformative impact of connecting with peers who understand the intricacies of FASD, both the challenges and the incredible strengths, and how these connections can reshape lives by reducing isolation and cultivating a supportive community.

At Adopt4Life, we created the bilingual FASD & Me: Strengthening My Community program to celebrate children and youth with FASD and their families, and enable members of their communities to better understand both their strengths and needs through the sharing of lived experiences. In doing so, we sought to reduce isolation and act as a catalyst for cultivating supportive communities. The program provides current facts about FASD, a hidden disability affecting an estimated 4% of Canadians, and serves to dispel harmful myths and stereotypes. The FASD & Me resources have become valuable tools throughout Ontario’s FASD community, frequently distributed by FASD diagnostic clinics, provincial FASD Workers, support group leaders, and front-line workers to their clients.

The difficulties in daily living that are often experienced by someone with FASD present a range of hurdles that can be overwhelming and isolating. From cognitive impairments to difficulties navigating abstract social situations, individuals with FASD (or any form of neurodiversity) often find themselves struggling to feel accepted in neurotypical social “norms”. Parents and caregivers grapple with a unique set of challenges in supporting their loved ones, which can become increasingly more complex as their child becomes a young adult – and frequently extend to grandparents, older caregivers, and adult siblings, who are supporting adult children. The resulting isolation can have far-reaching consequences to mental health, self-esteem, and overall well-being.

The Power In Shared Experiences – for Youth and Teens with FASD

With support from Kids Brain Health Network, we’re currently expanding the FASD & Me: Strengthening My Community program through a pilot project that builds on all that we know about the value of peer support networks, and asks how we can better support youth and teens with FASD. Teens and older youth experiencing daily challenges of FASD are frequently at a particularly vulnerable period in their life (considering school environments, social situations, etc.), and the FASD & Me: For Teens project aims to cultivate empathy and understanding while breaking down isolation and barriers to community. We’re currently partnering with 6 teens and young adults, all with direct lived experience of FASD, to support them to be peer mentors to other teens and youth with FASD.

Isolation often perpetuates a negative cycle that feeds loneliness. Peer connections disrupt this cycle by introducing a community of individuals who intuitively understand the experiences and challenges of the person next to them. We’re seeing through our current project that creating opportunities for shared experiences becomes a place where youth can freely express their concerns, share their triumphs, teach others about strategies that they’ve found successful, build transferable skills, and receive encouragement without judgment. Early insights from the program are highlighting that participants feel a sense of connection with their fellow peer mentors, feel validation of their common challenges, and can prompt them to see how their own experiences may provide a roadmap for other youth/teens with FASD.

The Power In Shared Experiences – for Families

Back to that transformative impact…effective peer support networks also enable parents, caregivers, and family members to build lasting friendships and impactful relationships with individuals who intimately understand the parallel journeys they’re on. As a fellow parent in an FASD peer support group once shared:

“I come into this room and I feel like I’m home. I can breathe again.”

The trusted ability to connect with others who are facing similar challenges, have taken similar steps before, who have fought the same battles – all create bonds founded on genuine empathy and shared understanding. These peer connections go beyond sympathy for challenging experiences; they can become a lifeline that pulls individuals and families out of the depths of isolation. Shame can’t live in the light – and it has no place in a space where we all deeply understand each other.

One of the most profound outcomes of connecting through shared experiences is the sense of genuine belonging that ensues. For individuals experiencing the adverse outcomes of FASD, finding peers who understand their struggles creates a space where they are seen, heard, and accepted. That innate sense of belonging, of being with people who truly “get it” inherently brings validation of their experiences and emotions, and establishes a foundation of trust that can open other opportunities for learning, shared strategies, and practical resources related to housing, employment, healthcare, education, and more.

I believe empathy is the cornerstone of shared experiences. When peers come together with shared connection and community, empathy thrives naturally. Whether as family members or individuals with FASD, peer mentors who have overcome obstacles bring hope, while mentees know they are not alone. Together, we see a profound understanding of each other’s journeys, creating an authentic foundation on which connections are built and people continue to discover their inherent strengths. The result is a collective empowerment that reinforces families’ ability to provide ongoing support. In a recent workshop session with our teen/youth peer mentors, one young person with FASD reflected on what has been the most helpful for her in her journey so far and shared this:

“My mom always believed in me and so now I believe in myself.”

Through the FASD & Me: Strengthening My Community projects, I’ve experienced how tapping into the magic of peer support connections, building community, and reducing isolation can be the spark that changes lives for the better. Our project team will be sharing more about what we’re learning, at the upcoming KBHN conference in October and the CanFASD conference in November.

We know for certain that building and nurturing peer support networks and communities amplifies the inherent strengths within the FASD community. Our shared experiences illuminate a path that leads towards a brighter, more inclusive future – where individuals and families can share their fears, find strength and support without judgement, and know they are never alone on their journey.