I never thought I would make much of a leader, much less an advocate! I have never had the new and exciting ideas that others did. I enjoyed being one in a crowd following other people, doing things that someone else thought of first…how painfully boring!!
All that changed when I became the mother of a child with ASD. An initial wave of concern and stress clouded all of my thoughts after the news of my son’s diagnosis. Once that began to dissipate, I realised with some level of anxiety, that the lifelong path that I was going to walk with my son was not going to be the one that others moved effortlessly along, ours was not even on a map yet. The developmental milestones that were so neatly planned out in a book that we were offered at his birth are still, to this day, a work in progress. Some have been met, to a certain degree, at some stage, after years and years of therapy and hard, highly creative work. All of his hard-won victories, using a toilet properly, saying hello, doing up his seatbelt, being able to safely cross the road (ok, we are still working on this one), have been achieved by me doing things differently. I have had to lead my son through a world that he can find complex and challenging. I have had to lead friends, service providers and teachers in their interactions with Charlie to prevent both parties from dissolving in a ball of frustration. My job has been to be an advocate for my son and I have actively advocated on his behalf countless times; in airports, in schools, in restaurants, in shopping centres and on public transport. Who knew that there was leader hiding away for all those years, only to be discovered when I had to map out the uncharted waters for my precious first born.
Advocating for individuals on the spectrum is what I do for a day job now and I love it. Helping other parents and their children navigate their journey is the best part of my day, I consider myself to have the best job in the world.
I would love to hear your stories of advocacy or inclusion, achievements or successes. Please feel free to contact me to be part of my blog or podcast to share your experiences.