Life Journey

Like her brother Benji, we recognized that Giulietta had low muscle tone at birth. By three months of age, she was already behind in milestones, she had difficulty simply holding up her head. We had learned through trial and error of many different physical therapy, that MEDEK physical therapy was the most effective approach for advancing motor skills. So we enrolled Giulietta in MEDEK at just three months old. The exercises looked unusual to the untrained eye, like hanging h

Giulietta was about eighteen months old when she first attended a neighborhood program, accompanied by a nanny. At that age, she couldn’t communicate, walk independently, or participate in any activity without physical support and facilitation. Despite these constraints, Giulietta loved school. She loved desk activities that challenged her, puzzles, books, anything that engaged her mind. She especially loved circle time, particularly when there was music, which has always cap

In 2011 we heard about the STEPs program summer camp. It was a special needs camp and I wanted to explore it to find out if it would be a good fit for the kids. I suggested that I would shadow for a day and then decide. However, I was informed that the staff at the program were well versed in navigating the teaching of disabled children. Given that my kids were medically fragile, I wasn't comfortable sending them to a camp without ensuring that the setting would be suited for

When Benji was an infant, from the time he was about three months old, we would take him to coffee shops. There he was mesmerized by baristas making coffee. We would either prop him up on the counter or stand on the side of the counter holding Benji while he gazed tirelessly at all the activity, from the making of the coffee to the paying. He was mesmerized. As he got older, while he had little interest in playing or watching videos, he remained focused on kitchen tasks and a

Following the nursery school experience and after researching other programs in the city, I realized that Benji would not fit into a traditional schooling model. What he needed was a small school with customized learning that would help him build foundational skills: basic things that others took for granted, like walking, pointing, holding a utensil, simple communication. At that time, we still believed there were off-the-shelf approaches that could benefit him if only we co

Camp Greenacres Summer Camp When Benji and Giulietta were younger, they had the opportunity to attend several different summer camps, each offering meaningful experiences that supported their growth and confidence. These camps became important spaces where they could explore new activities and feel included alongside their peers. Camp Green Acres stood out as a particularly positive experience, especially for Giulietta. She loved spending her days outdoors and moving through

School trips at MJDS have always been planned with inclusion in mind, and Benji and Giulietta have been active participants in every outing. From local excursions to trips to Montreal and Quebec City, the goal has always been for them to be fully involved alongside their classmates. Teachers, support staff, and peers worked together to make activities accessible and engaging. Classmates also played an important role in inclusion, offering help when needed and welcoming Benji

A Bar Mitzvah is a significant milestone in the Jewish faith, embarking on a  transition into adulthood at the age of 13. Everyone at the school, from the Principal, Teachers, classmates, and parents of friends, and guests, came together to create a truly deeply meaningful  celebration of Benji. By hosting this significant milestone at his school's synagogue, the event created a unique bridge between educational and cultural spaces where Benji had grown up.  A Day of Recognit

In 2017, Benji underwent bilateral derotation osteotomy surgery, a significant procedure that required him to take months off from his regular activities. This surgery was not just a physical challenge; it was a journey that encompassed much more than just recovery. Benji essentially had to relearn many of the basic skills we often take for granted, including how to walk. This process was undoubtedly daunting, but Benji faced it with remarkable bravery and resilience.   Throu

Benji has found a meaningful way to contribute to his community by volunteering at Baycrest, where he helps keep the cafeteria clean. Each Tuesday, Benji approaches his tasks with focus and enthusiasm, using his checklist to gather items like spray bottles and cloths. The checklist provides a clear, visual guide, helping him know exactly what to do and in what order, which keeps him organized and confident in completing each task. Volunteering also gives Benji opportunities t

Shovel to Ground: Benji's Laneway Suite For the past few years, Galit has been working closely with a builder to design the perfect laneway suite for Benji. Now 20 years old, Benji is ready for a space that reflects who he is and supports the life he deserves, one with purpose, dignity, and independence, while still ensuring he has the assistance he needs. The suite is being built in the backyard, allowing Benji to have his own home while staying connected to his family and f

"Eighteen-year-old Benji Fisman was born with a rare genetic disorder yet despite his complex medical issues Fisman recently celebrated his first anniversary working at IKEA. A personalized plan was set in place to help Fisman achieve workplace goals. Today he's enjoying a life of remunerated employment, increased independence and a sense of belonging with a large and cohesive workplace team. Susan Hay has the story." - Global Celebrating Work and Growth Benji has been making

Phelan-McDermid Syndrome (PMS), also known as 22q13 deletion syndrome, is a rare genetic condition caused by the loss or dysfunction of the SHANK3 gene, along with other genes essential for building neural networks. SHANK3 plays a vital role in brain development, and its absence is one of the known genetic causes of autism spectrum disorder (ASD). While PMS affects each individual differently, Benji and Giulietta share this genetic diagnosis but experience it in their own uni

Giulietta has always loved music. She lights up whenever she hears a guitar, ukulele, or piano, and she’s happiest when there’s music playing around her. Whether it’s a live band at a festival or someone strumming a tune at home, she’s completely captivated by the sounds and rhythms. Music brings her so much joy, it’s a big part of who she is. Giulietta developed a deep love for music from an early age and enjoyed listening to anyone play the guitar and her mom play the piano

Benji and Giulietta attended Montessori Jewish Day School (MJDS) in North York, Ontario, until age 16. Their educational journey was supported by dedicated 1:1 care educators who were instrumental in their development within the school system. This personalized arrangement provided complete oversight of their programming, establishing MJDS as a strong foundation for both academic learning and social development. Inclusive Learning Environment MJDS’s educational model set a p

This guide outlines how we built a purposeful, balanced life for Benji and Giulietta, one rooted in vision, connection, growth, and empowerment. Each step reflects a lived process: lessons learned, strategies refined, and goals that continue to evolve. Step One: Clarifying Our Vision It began with a simple question: What does growth look like for Benji and Giulietta? Once we understood that, everything else fell into place. Our choices, goals, and supports started aligning ar

A day in Benji’s life at Windreach Farm. Every Friday, Benji takes part in a social program at Windreach Farm, where he engages with peers his age in a variety of hands-on activities that promote skill development, independence, and community connection. His responsibilities at the farm are diverse and meaningful. He contributes to maintaining the property through cleaning, raking, and weeding, keeping the farm environment safe and welcoming for everyone. Benji also works in