Moral dilemmas continue to plague… I have never seen myself as one of those mothers who poured all of her competitive spirit into shamelessly promoting her child. A kind of stage mom gone rogue, using her kid’s exuberant charm and/or talents to gain recognition from thousands of strangers. A kind of warped narcissistic mirror of neediness, an adult version of a child’s plea, Look at me! Look at me! Yet, in light of recent events with parents blogging about their children, posting photos, using their real names, telling excruciatingly personal stories, many not kind or endearing, while supposedly illuminating their child’s and their struggles for all the world to read, judge and comment on as a way to advocate for better services, it’s impossible for me not to reflect on what exactly am I doing here and how is what I’m doing so dissimilar?
I began this blog as a record, of what I hoped and expected would be, Em’s progress after a series of radical stem cell treatments. I didn’t think or expect this would be read by anyone other than family and friends and those who might be thinking of embarking on similar radical treatments to “cure” their Autistic child. At the time, April 2010, I wasn’t thinking ahead, I didn’t consider the broader implications, I thought of this space, this blank page, as a place I could come to record what I saw and hoped for, while believing that whatever it was, it would be “miraculous”.
What I didn’t know, couldn’t have known, was that the miracle that occurred ended up having nothing to do with stem cell treatments or any other treatment or therapy. The miracle has been my own evolution, a kind of 180 degree turn from where I once was in my thinking, in my attitude and in my expectations about autism and what it means to be autistic. And while there is no doubt that my daughter continues to make wonderful, steady progress, it is not as the result of various remedies and treatments we embarked upon, but rather as a direct result of NOT engaging in those various so-called “therapies”. What harm we may have done to our daughter because of those treatments, bio-medical and otherwise, is something we will never know, but must live with the uncertainty for the rest of our lives.
So why write about all of this? Does the world really need another parent blog about their kid? Probably not. However, and here is where things get muddy for me, every time I think about ending this blog, every time I think I can’t keep doing this, it’s not right, it’s not fair to my daughter, it’s not for me to write about her, it’s not for me to broadcast what she says and/or does, it’s not for me to post photos of her, these are not my truths, they are hers to tell if and when she can, every time I think along these lines I wonder if I would have done things differently had I read a blog of someone’s journey that was similar to mine? Would I have still gone to such drastic lengths?
Is it possible a child’s life might be made just a little easier because of something I write or say here? Is that just ridiculously grandiose to even think in these terms? And yet, I have to go back to my own history of having an eating disorder for more than 2o years and the help I was given from hearing others candid, uncensored stories of hope and recovery. Those stories that resonated were the ones I clung to so desperately during those first painful and terrifying years as I tried to change my life. Years when making it through a single day without binging and puking was considered a “good” day. I needed those stories. Had those people NOT told them I doubt very much I would have gotten through. I don’t mean that to sound self-congratulatory, it’s actually the opposite, I could not have gotten to where I am without all those people, all those stories, all those people who reached out to me and said, “it’s okay, you can do this. Here’s my number, give me a call if you’re in trouble.” I learned to lean on people, I learned that I didn’t have all the answers, I learned that there were more things I couldn’t control than I could. I learned what it meant to accept what is, the here and now. I learned about being present and that I hold my breath when I’m fearful and I learned that I wasn’t alone.
So in the end, this blog is no longer a document of “my daughter’s journey through a childhood of autism” as I once described it. This blog is a document of my journey as a parent and as a human being and how autism has changed my views. It is a far more beautiful and complex world than I ever imagined or dreamed possible. It is a world that is evolving, far too slowly for my taste, but I have seen glimmers of what is possible. A world where we do not segregate, where ALL people are treated as equals, not just as an idea, but in reality, a world where everyone is fortunate enough to have an Autistic person in their life. A world where autism is no longer feared, but is embraced.