I’ve been putting my story and the story of Nicky “out there” for over 15 years. It is both an act of love and an act of selfishness.
It is critical to me that no one, as much as I can help it, ever feels alone in their journey with their loved one with autism. Even amidst the crazy stats of 1 in x, with x vacillating but remaining below 100; it is possible to feel like no one can possibly understand what we are living.
For me and Nicky, it has not been a journey of “neurodiversity worthy of celebration.” It has been a journey of heartbreak, violent episodes, early residential placement, lack of progress, hospitalizations, meds and interventions, therapies and even snake oil. This has not been for lack of commitment, resources, treatments or poor decision-making. As I like to say, it is what it is. And I know that I’m not alone, but I only know that because I talk. A lot. Online and offline.
Unfortunately the way autism has affected my son is ugly, and I’ve always felt like I’m not supposed to talk about it. I’ve been marginalized in the world of autism, globally and locally…although I’ve found that when I need my community, more and more they answer my call without question. I can’t put into words how grateful I am, and that’s why I keep doing what I’m doing. But I think it’s a product of putting myself out there again and again, for better or for worse, in sickness and in health.
I blogged for a long time on Tumblr and invite you to read about my adventures and opinions. I’m moving my blog soon to another site and I’m amassing a group of co-bloggers whose journeys have been similar to mine but will also provide different perspectives. I know that title will probably upset a few, but for others it will be a huge relief to find a space where what they are feeling can be discussed, and is being lived by someone else. At least, I hope it will be.