The Power of Relentless Advocacy

Supporter of a grandchild with a learning Disability. 

A Personal Story By S. Demers:

When my child was diagnosed with dyslexia, my first thought was, Did I do something wrong? It was an unexpected reaction, yet one that surfaced almost immediately, intertwined with memories of my own childhood. I had long suspected that I, too, had a learning disability, dating back to around 1991, so in many ways, I understood the challenges that lay ahead. Still, hearing the diagnosis applied to my own child was deeply overwhelming.

Years later, in 2011, history repeated itself when my granddaughter was diagnosed. Although the town had changed, our purpose was unmistakable: we were determined to secure the support she deserved. This time, we enlisted the help of an advocate, a decision that proved to be pivotal.

Prior to the diagnosis, our understanding of learning disabilities was limited. We conducted extensive research and reached out to a family we knew who had navigated a similar experience. While we wanted to be as prepared as possible, we also recognized that much of this journey would require learning as we went. When the diagnosis was confirmed, my immediate thought was, Here we go again. In first and second grade, my granddaughter began working with tutors and was pulled out of class for reading support. The pattern was familiar, but this time, our prior experience gave us clarity and direction.

Although there was uncertainty, we did not panic. With guidance from family friends who had faced similar challenges, we learned what steps needed to be taken. The most difficult aspect was not the diagnosis itself, but rather navigating the school system. Despite being organized and proactive, we encountered unexpected resistance from the school liaison, which became a significant hurdle.

Unlike many parents, we did not experience guilt or self-blame. Our focus was on action. The greatest challenge was identifying appropriate resources and advocating effectively. We requested an outside evaluation, which was provided at no cost, and reviewed the results with the town’s teachers and hospital staff. The conclusion was clear: the local school could not adequately meet our granddaughter’s needs. This realization marked a turning point. A comprehensive team meeting followed, involving teachers and the school liaison. While the process was intimidating, we remained steadfast in our resolve.

Ultimately, finding the right support required us to become strong self-advocates. We explored two specialized schools and ultimately selected one located in Massachusetts. A woman was recommended to us, and we contacted her immediately. Although our first impression was unassuming, she arrived slightly late and disheveled, her expertise quickly became evident. She guided us through every step of the process. Eventually, we met with the Special Education Director and formally requested our granddaughter’s transfer. While the meeting was daunting, the outcome exceeded our expectations. Not only was the transfer approved, but the once-challenging liaison became an ally, even recommending that our granddaughter consider residing at Landmark for high school. That level of insight and support was invaluable.

In retrospect, there is very little I wish I had known at the outset. The journey involved countless hours of driving, medical appointments, and coordination with town transportation. Emotionally, however, it was far less overwhelming than the first time. By then, we were seasoned advocates, prepared, informed, and unwavering.

The advice I offer to any parent beginning this journey is straightforward: stay organized and proactive. Do your research. Understand your child’s rights. Advocate relentlessly. Do not accept “no” as the final answer. Ensure that your child, or grandchild, receives the support they deserve. With preparation, persistence, and the right guidance, it is possible to navigate the challenges and secure the education and opportunities necessary for a child to truly thrive.