When people see Benji and Giulietta's program today, what they are seeing is not how things have always been. This is the result of two decades of work that included failures, dead ends, and crises that made us question whether we could continue. The path was not straightforward. There were years when progress felt out of reach, when we were exhausted and desperate. The system offered no solutions, and we had to create something from nothing. There were crisis points that for

The following organizations offer guidance, education, advocacy, and direct services to individuals with developmental disabilities and their families in Ontario. The list is not exhaustive and there may be additional organizations that can provide support. Partners for Planning (P4P) Partners for Planning is a national non-profit organization, founded in 2009, that supports people with a developmental disability and their families to plan for the future. P4P provides indepen

What Is a Transfer Payment Agency? A Transfer Payment Agency (TPA) is an organization that receives government funding from the Ministry of Children, Community and Social Services (MCCSS) and delivers developmental services and supports to individuals with developmental disabilities. The ministry does not distribute funding directly to individuals or families without an accountability structure. Instead, funding flows from MCCSS to a TPA, which then administers or distributes

Ontario offers several government funded programs that provide direct funding to individuals and families to purchase supports and services in the community. These programs allow recipients to choose their own providers and direct how funding is used, outside of residential or group home settings. The programs listed below are organized by age group and ministry. Children and Youth Under 18 (Ministry of Children, Community and Social Services) Special Services at Home (SSAH)

Until Giulietta was eight years old, she had no reliable means of communication. We didn’t know what she understood. We didn’t know what she wanted to express. She had no tools to tell us. She seemed lost in a world with no connection to the people around her. And yet, her eyes lit up when she heard music. She smiled when we read to her. Her face came alive when she saw instruments. She watched videos transfixed, completely absorbed. Sometimes she would burst out laughing for

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 neighbourhood 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 ca

​ Giulietta was born on March 8, 2007, by which time we had moved back to Toronto. She was a beautiful, sweet baby that brought joy to our family. However, by six months of age, Giulietta had low muscle tone and developmental delay.

Our son, Benjamin (“Benji”) was born and immediately whisked to intensive care with numerous medical problems. Shortly after he was born, the diagnosis came: 22q13 deletion syndrome (now known as Phelan McDermid syndrome); a disorder so rare that only a few dozen cases had been reported worldwide. The geneticist's words were prophetic: "Take him home, love him, he will write his own story." Where It All Began: Our Journey Starts Here   The first year was constant medical cri

Giulietta soaking in the music in the village There was always something special about stepping away from our everyday routines and truly reconnecting as a family. For us, that place was always Blue Mountain. Over the years, it became more than just a getaway. It became a tradition we all looked forward to. It was where we relaxed, explored, and spent real, meaningful time together. Booking a room with a full kitchen is always important for our family. For some, that might ju

In 2015, following Sisi's cancer diagnosis, she was offered a Make-A-Wish trip. Make-A-Wish Canada is an incredible organization that "creates life-changing wishes for children with critical illnesses. We are on a quest to bring every eligible child's wish to life, because a wish is an integral part of a child's treatment journey. Research shows children who have wishes granted can build the physical and emotional strength they need to fight a critical illness." As the Make-A

First Day at MJDS What the kids needed from an education point of view was beginning to take shape for me in 2011. By that point, it became clear that what we envisioned was Benji and Giulietta immersed in a regular school with a customized program so that they could work and interact alongside neurotypical peers. I had searched far and wide for special needs schools, explored public schools, and hit barriers and limitations wherever I went. The public school system could not

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

Finding the Perfect Inclusive Nursery for Benji When we left Philadelphia in 2006, Benji was 18 months old. Upon our arrival in Toronto, I sought a nursery school that could accommodate and stimulate him so he could have social interactions and gain skills like any other child. We specifically moved into a neighborhood where a reverse integration nursery school supported children with diverse skills and needs. It was within walking distance from our home, and I could drop Ben

Benji had low muscle tone. This affected his ability to hold his head up, sit up independently, crawl, stand, or walk. From Day One: Supporting Benji Through Hypotonia Benji's low muscle tone (hypotonia) was present since birth, and we attempted every form of early intervention to help him meet motor milestones. We worked closely with numerous occupational and physical therapists. In the early days, we tried to encourage "tummy time" to increase his tolerance to being prone a

Hello! I am Neil. I grew up in the Philippines and graduated with a Bachelor of Science in Nursing in 2011. Soon after completing my degree, I worked in the BPO industry for two years. I then began a career in the pharmaceutical field as a Medical Representative, a role I held for six years. During this time, I developed strong skills in communication, client relations, and healthcare product knowledge. In December 2022, my family and I relocated to Canada. Upon arrival, I be

Camp Greenacres Summer Camp When Benji and Giulietta were younger, they had the chance to attend several summer camps, each offering meaningful experiences that supported their growth and confidence. Summer is such an important time in a child’s life, not just for fun and adventure, but for forming friendships, discovering new interests, and building a sense of independence. For Giulietta, camp became a space where they could explore, learn, and feel included alongside their