What do you think of when you read the word activist?
Pre-autism the only thing I had ever activated was a credit card account. I’m pretty sure they used activator in my hair dye too, if that counts for anything. I wasn’t a total joke-I was an executive at a Fortune 500 company with clients all over the country- but I had lost touch with the really important things. Back then when I read the word activist it made me think of a lone woman living in a tree so it wouldn’t be chopped down, or those folks who stand in front of Saks and attack people who exit wearing furs with cans of spray paint. Certainly not me, right?
Of course, post-autism I became a bit more open-minded…funny how that works. I read a book by a celebrity-activist. I started reading blogs by moms-turned-activists. I quickly came to appreciate the efforts of the parents who came before me and stomped out a path from nothing so that I might move more quickly down the road to recovery with Harry (and by the way moms-that-came-before-me: I think of you guys and thank you silently every.single.day. What you guys had to go through without yahoo groups or facebook to connect you boggles my mind. The Thinking Moms know you are the real heroes…know that. You are appreciated, admired and loved here.)
Anyway, as months turned to years and we became veterans of Autism conferences, treatments, practitioners, I found more and more people being referred to me for help. One of my passions has always been mentoring people and developing talents…helping them grow professionally. I shifted focus from the corporate world to the autism world. My husband shared our precious evening hours with strangers and old friends alike who had gotten the dreaded diagnosis and wanted to know what to do next. Some friends and I started a secret newbie board on facebook, with 25 or so of us and 2 newbie parents. That number quickly doubled, quadrupled and ten-times-ten-folded. Helping people one by one was good, but there were too many that we weren’t reaching, and couldn’t in that type of forum. Even though by this time I understood what was really going on with our government, the medical field, and the pharmaceutical companies, and even though I took the time to read pubmed studies and every book written about new treatments by doctors I respected, and even though I talked candidly to folks in restaurants, malls, bars and playgrounds about autism and environmental toxins including vaccinations, I still did not think of myself as an activist. I still shaved my legs and wore platform heels on date night, so obviously I was just a mom, talking to other moms about what had happened to us, and how to prevent it from happening to their child.
The idea behind TMR was born at AutismOne last year and really, the original idea was one of support. (By the way–you’ve heard by now we are hosting karaoke but if that is not enough to compel you to get your butt to Chicago, let me tell you–you will find support there. Game-changing.) Too many people face Autism without family support, which is shameful—I’ll get to this in another blog post–or as single parents because we all know about the divorce rate, without a solid group of people to lean on who really, really get what it is like to be up from 1 to 4 a.m., exhausted, with a child who is compelled to run and scream, smearing feces on the walls, hurling objects, hitting and biting you. I will never condone the actions of parents who take first their autistic child’s life and then their own, but I try to understand the depths of despair one must be in to get to that point. I feel it is my life’s mission to try to prevent that from happening. From even getting close to happening. So, we thought, we’d write a book. Sharing our individual stories in depth, our experiences, our particular types of Autism to reach more people and lend, as best we could, the support and knowledge to keep moving forward. But still, I felt I was mentoring, educating. Certainly not an activist. I mean, I was not sleeping in a tree collecting puzzle pieces for the cure or anything. (I know. I’m accidentally judgmental too. I have a lot of crunchy friends who will be whacking me on the back of my head with my platform heel later.)
The book is written and being edited. Its coming; hopefully soon. The original idea behind the blog—before we started writing it–was to get out there and build a following. We realized after the first few days that we had unleashed something different than what we’d anticipated, that hadn’t existed in quite this form before, and suddenly the blog was front and center, our baby. A baby that will not have anything toxic injected into it, for sure and certain. Twenty-five people who are friends first, forming a company, egos aside, to share knowledge and support on a daily basis for the thousands and thousands of parents out there just learning about their child’s diagnosis. Doing what it takes—and man, we’re learning it takes an awful lot—to reach out and connect families. So I’m an accidental blogger as well. OK, I can accept that one. I’ve always liked writing. But activist?
It was a comment on the blog complimenting our activism one day that made me think that maybe I was. That maybe I had been all along. That maybe, just maybe, the narrow-minded version of activism in my head was a caricature and that the definition of an activist is what we are all doing, each and every day. Spreading the word, not taking NO. Educating, mentoring, supporting other parents, showing them the way.
Maybe we didn’t know exactly where we were headed when we started TMR, but we’ve got a pretty good direction now, and some great surprises coming soon. I’m embracing it. All of it. I mean, my original plan was to have one perfect kid, and I got three perfect ones instead…including Harry. I was a lit. major who ended up a successful banker. God laughs at our plans, right? So…Thinker. Revolutionary. Activist. Maybe it wasn’t so accidental after all.
Founding President, The Thinking Moms’ Revolution