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 favor 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 highly engaged, sending me frequent updates and pictures.

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 I could have a little respite.

While we spent considerable money on therapies and the school and were truthfully seeing very little progress, the staff was friendly and warm and genuinely cared for Benji. However, as time passed, the original teachers moved on and a new one-to-one aide was hired to support Benji. It was not a good fit. She was neither kind to Benji nor understanding of his needs. The director refused to acknowledge the mismatch, and our relationship grew increasingly adversarial. Benji had to be removed from the school after a particularly egregious situation where the teacher refused to drive him, claiming he was "dangerous." She alleged that Benji, in his car seat and with literally no fine motor skills, could unlock the car door and open it. The director refused to arrange suitable transportation for Benji or refund our tuition. The school was far away and I was not able to drive Benji back and forth given my other commitments.

It became clear in retrospect that the escalating tuition for diminishing returns was a cynical exploitation, something parents of children with disabilities are often subjected to, given their desperation to support their children and their reliance on the good faith of people ostensibly hired to help them.

The conflict ended in small claims court, where we were ultimately refunded our tuition. This experience reminded me once again of the danger of not listening to my parental instincts and deferring to "experts." I had increasingly suppressed my instincts as I noted the discrepancy between reported skill attainment and the lack of any actual gains. My desperate clinging to wishful thinking and my own difficulty fully accepting the challenges Benji was dealing with had led me to believe that rigid teaching methods could work. But trying to fit Benji into these methods only resulted in greater frustration: a catch-22. The less successful Benji was with failed programs, the more frustrated he became and the less engaged he was with trying. He was at risk of being labeled a behavioural problem.