Meet Benji and Giulietta

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.

Benji is thoughtful, kind, and happiest when he has a purpose. He enjoys helping others, working at IKEA, volunteering at the hospital, and spending time at the farm caring for animals. He thrives when he has meaningful responsibilities and opportunities to contribute to his community.

Giulietta is energetic, funny, and full of personality. She brings enthusiasm to almost everything she does and has a wonderful sense of humour that keeps the people around her smiling. She loves music, books, learning new words, and finding creative ways to communicate. When she is interested in something, her determination is impossible to miss.

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.

Supporting Blogs:

• Building A Purposeful Life

• Understanding Phelan-McDermid Syndrome: Benji and Giulietta’s Journey

• The Teacher I Never Expected: Meeting Benji

• Meeting Giulietta

• Benji's First Steps

• Giulietta’s First Steps

• Benji's First Day at a Reverse Integration Nursery School

• Giulietta’s First Day of School

• Benji’s Journey Through Surgery: Courage, Care, and Community Support

• Benji's Make-A-Wish Trip

• Giulietta’s Make A Wish Trip

• Benji’s Bar Mitzvah Celebration: Milestones, Memories, and Community

• Family Traditions and Adventures at Blue Mountain

• Sisi’s Impact: Supporting Her Siblings Today and in the Future