Discovering the Right Learning Path for Benji

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 could find the right experienced teachers to implement them.

With each passing day, the gap between Benji's skills and those of his peers grew wider. His delays were global: gross motor, fine motor, and communication. We were desperate for Benji to learn to speak, still believing that "if only" we found the right method, the right teacher, the right program, he would "catch up." I spent all my free time, late nights and weekends between working and childcare, combing through the internet and corresponding with therapists and educators, looking for ways to advance Benji's skills. I literally couldn't imagine a life where Benji wouldn't be independent and would have challenges. That was my own limited thinking at the time, which took me many years to overcome in favour of a framework where Benji could live his best life meeting his full potential, whatever that was.

We finally found a talented teacher who had started a small school that seemed to share our values, understand Benji's learning needs, and was responsive to all my requests, including integrating therapists into his learning program. The highly skilled and kind teachers, personally hired by the director, would pick Benji up in the morning and bring him home after school. There were only two to three other children in the program, and it seemed like a warm and loving environment, the best-case scenario to enrich Benji's learning and emotional needs. The program was extremely expensive, and with every additional request I made, the costs increased. The teachers and director were initially highly engaged, sending me frequent updates and pictures, and claiming progress. All the things I wanted to hear.

We tried every form of speech therapy, including Kaufman and PROMPT therapy. After an unfortunately unsuccessful two-week trip to Santa Fe, New Mexico, to jumpstart an intensive speech therapy program, I hired PROMPT-trained speech-language pathologists to integrate the method and teach the teachers at the school how to implement it. I believed this was our only hope for Benji to learn to speak and wasn't ready to give up on verbal communication. I was becoming increasingly despondent and burnt out as I had to work to support the costs of the school and therapies, again with limited gains. By this point, Giulietta had been born, and I also had to hire a full-time nanny to care for her. She required significant therapies and teaching as well. As the burnout mounted, the school offered us a "Saturday program" so there could be brief respite.

We enrolled Benji in a private school with one-to-one support. The original staff were warm and cared for him, but when they left and new staff were hired, the fit was not good. Over time I had growing concerns about the mismatch between what the school was telling me regarding progress and the gaps I continued to see. My desperation to help Benji and my difficulty accepting the extent of his challenges led me to suppress my instincts and defer to the school's "experts" and their rigid teaching methods. The less successful Benji was with these approaches, the more frustrated he became and the less engaged he was with trying. He was at risk of being seen as having behavioral problems when the real issue was that the methods were not suited to his needs. We eventually terminated the relationship.

The experience taught me an important lesson about trusting my instincts over deferring to "experts" when something was clearly not working.