This blog was written by Barbara Domingue, M.Ed., ATP — Executive Director of Community Autism Resources
With my son turning 34 years old this November, I’m at an age where I think back on the many moments that took us to this point in our lives. From the very beginning, there have been people in our lives, those who experienced autism long before my experience, who generously shared their experiences, their wisdom, their journey.
2 of my first phone calls would not be considered warm and fuzzy conversations. They were with women who knew that I was struggling, not only to understand my son, but also with trying to make sure that, at his young age, he was getting the best possible services. The first woman I spoke to was Barbara Cutler, Ed.D. She wrote the book “Unraveling the Special Education Maze.” I called her in a panic and she calmly asked me if I had read her book. I confessed that I had not. She suggested I read it, make notes and call her with my questions. While I was surprised by this, I later realized that she was helping me to get focused and teaching me the beginning steps of effective advocacy. She has been a life-long mentor to me. No nonsense, clear thinking, and a passionate advocate. She taught me how to advocate effectively for my son. Barbara has never been judgmental or critical of my efforts. She has always been a source of strength and comfort. Standing on her shoulders, I knew that helping each other was a necessary path in our journey. She invited me to join the Northeast Regional Conference on Autism and later, to be part of the Autism National Committee (AUTCOM). This group is dedicated to “Social Justice for All Citizens with Autism” through a shared vision and a commitment to positive approaches. I met wonderful people in this group. These early advocacy endeavors helped me to feel connected to others and provided me with wonderful information to assist my son. It also taught me how powerful we can be when we work together!
I also spoke with Norma Grassey. Norma was living in Cohasset and was the I&R person for the MA Chapter of the Autism Society. This was long before there were autism support centers. Norma began by asking me how old my son was, I tearfully told her he was not quite 3. She told me that her son was 8 years old & that I would make it. What she actually said was, “You’ll live.” She went on to explain that this was the first stage – getting to understand him and how autism affects him; getting to know the system and what I needed to do to prepare myself.
I joined the MA Chapter of the Autism Society and had the privilege of working with Norma through that group. Standing on her shoulders enabled me to see how I could assist other parents on their journey.
The last person I wanted to mention, whose shoulders I’ve been fortunate to stand upon, is Dr. Barry Prizant. My husband Bob & I were really at loss in knowing what our next steps should be when Nick was diagnosed. I felt we were being pulled in many directions. But in our gut, we knew that we wanted him to be treated with respect and kindness. We wanted to work with individuals who acknowledged the many facets of autism seen in Nick. We knew he was so much more than the behavior we were seeing and wanted people know this as well. A dear friend introduced me to the work of Dr. Barry Prizant. Immediately my husband & I knew that he was a kindred spirit. I confess we took to stalking him – in the nicest of ways. We would find out where he was presenting and make sure we were there. Through these workshops, we began to understand Nick in a deeper way. We started to figure out the “why” when he reacted to things. Nick was enrolled in a program where Barry was the Director of the Communication Program. All these many years later, long after Nick left that program and moved on, Barry continues to teach us the importance of sharing what we know; looking at and treasuring our son for the “uniquely human” being that he is.
Nick is now an adult and I continue to learn from those who came before me and hope that, in some small way, I can repay the kindness of those who helped us and continue to help us along the way.