Meet Benji and Giulietta
Updated: Jun 23
Before there was a program, a framework, a Microboard, or a Circle of Care, there were simply two children named Benji and Giulietta.
Like many parents, their family started with hopes, dreams, and expectations for what the future might look like. What they could not have predicted was the journey that lay ahead, or how much creativity, persistence, and determination it would take to build a meaningful adult life for both of them.
Benji and Giulietta live with Phelan-McDermid Syndrome (PMS), a rare genetic disorder. PMS affects communication, learning, and development and is often accompanied by significant medical and support needs.
Although they share the same diagnosis, Benji and Giulietta are very different people.
Introducing Benji
Benji is thoughtful, kind, and happiest when he has a reason to get up and go. He loves being around people and enjoys spending time in the community, watching what is happening around him and seeing people at work. Whether he is at IKEA, Baycrest, Starbucks, or out running errands, Benji is always paying attention. He enjoys watching people work, helping where he can, and being recognized by familiar faces.
Benji takes a lot of pride in the work he does. He enjoys his job at IKEA, volunteering at the hospital, and helping out at the farm caring for animals. He likes tasks that have a clear purpose and enjoys working alongside others. At WindReach, one of his favourite parts of the program is participating in heavy work activities and jobs where everyone works together toward a common goal. Being able to contribute in a meaningful way gives him a real sense of accomplishment.
Family is also a big part of Benji's life. He loves going for walks with his mom, especially in the evenings when things are quieter. He enjoys spending time outdoors with his family and their dog Charlie. Weekends with his dad are another favourite, often spent visiting local cafes, exploring the community, and enjoying each other's company.
More than anything, Benji enjoys feeling connected to the people and places around him. He likes having somewhere to be, people to see, and something meaningful to do.
When those pieces come together, he is at his best.
Introducing Giulietta
Giulietta is full of energy, personality, and determination. She is curious about the world around he and when she is interested in something, she puts her whole heart into it.
Learning has always been one of Giulietta's strengths. She loves working on sight words, spelling, and building her vocabulary. She is proud of what she learns and enjoys showing others what she knows. Many of her learning opportunities happen in the community, where she can connect new skills to real-life experiences and situations.
Communication is something Giulietta works hard on and genuinely enjoys. She loves using her iPad to share her thoughts, talk about things she likes, and connect with the people around her. As her communication skills have grown, so has her ability to express her opinions, make choices, and participate more fully in everyday life.
Music is one of Giulietta's favourite things. She loves listening to songs, watching videos on YouTube, and especially enjoys hearing people play guitar or ukulele. One of her favourite sounds is listening to her younger sister Sisi play the piano. Music captures her attention and often brings out her biggest smiles.
Giulietta also enjoys spending time with family and friends. She loves swimming, going bowling with Gia on weekends, and getting out into the community. One thing everyone who knows Giulietta learns quickly is her love of benches. On walks, she is always on the lookout for a good bench and is often the first one to spot it. She enjoys sitting, taking in her surroundings, and spending time with the people she is with.
Finding a Path Forward
Like many families raising children with complex disabilities, Benji and Giulietta's family spent years searching for services, therapies, programs, and professionals who could help support their development. The expectation was that if the recommended pathways were followed closely enough, progress would naturally follow.
But over time, it became clear that something was missing.
Many traditional services focused on isolated goals rather than building a meaningful life. Skills learned in one environment often did not transfer into everyday life. Programs were frequently disconnected from one another, making it difficult to create consistency across home, school, work, and community settings. Too often, the focus was on deficits rather than strengths, compliance rather than independence, and services rather than outcomes.
As Benji and Giulietta grew older, another challenge began to emerge. The transition into adulthood revealed how few opportunities existed for meaningful work, genuine community participation, and long-term planning. Like many families, there was growing concern about what life would look like after school ended. Simply filling time was never the goal. The goal was to build a life filled with purpose, relationships, contribution, and belonging.
Instead of asking, "What program is available?" they started asking, "What kind of life does Benji want?" and "What kind of life does Giulietta want?"
Rather than building life around services, the focus shifted toward building services around their lives. Their interests, strengths, goals, relationships, and community connections became the starting point. Work experiences, communication systems, life skills, recreation, volunteering, and social opportunities were intentionally connected so that learning in one area could support growth in another.
Over time, this evolved into the framework that now supports Benji and Giulietta. A structure built around person-centered planning, individualized goals, community participation, meaningful work, communication, and long-term stability. It is not a perfect model, nor is it intended to be copied exactly. Every individual and family is different.
What Benji and Giulietta's story demonstrates is that meaningful adult lives are possible when supports are built around the person rather than expecting the person to fit into existing systems.
Today, Benji works, volunteers, contributes to his community, and continues developing greater independence. Giulietta is building communication skills, workplace skills, and community connections while pursuing activities she genuinely enjoys. Their journey continues to evolve, but the foundation remains the same: a belief that every person deserves a life filled with purpose, belonging, and opportunities to grow.
This website exists to share that journey, what has been learned along the way, and the framework that helped make it possible. The hope is that other families can take ideas, adapt them to their own circumstances, and continue building purposeful lives of their own.
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