I have kept the specific blog, post and commenter who I refer to in this piece anonymous because my point is not about any particular person, but about a larger issue. But first, a little background… I was alerted to some negative comments left on a friend’s blog. She had written a post about learning to accept her Autistic child. It was a beautifully written, honest and loving post detailing what things had helped her find her way to acceptance and how that journey had changed her and her relationship to her child. The path she describes was similar to my own, except mine took much longer and was more circuitous, but I could completely relate to her process. It was my journey, only on speed.
I went to the blog to read the comments and read this: “”You accepted autism, I fought it.” I stopped breathing. I felt as though someone had taken a 2 X 4 and rammed me in the solar plexus. I became aware of the fluttering in my stomach with the simultaneous sensation of dizziness in my head, starting just behind my eyes and then a prickly feeling at the back of my skull. I could feel my heart pounding. I swallowed. I read on. The words are no longer important. She related how she had “recovered” her child as though it were scientific fact and then said that her thinking would one day be common knowledge and any other view would be considered “archaic.”
I had to stop reading. I stood up. I left the room, walked around, drank some water and came back. I could feel tears welling up. I swallowed again. I was aware that my hands trembled as I read “Seems to me a thinking person would keep an open mind and once you accept autism…there is no more thinking that occurs…just the acceptance.” I couldn’t work out what that meant as there was no logic that I could get a firm handle on, but the feeling those words evoked was one of failure and shame. I had to make a conscious effort to take a deep breath. I felt the sting of her words, like a knife cutting me open. I sat there and read the other comments and another from her, reiterating her stance, her position. Her story, no longer a personal tale, but one given forth as though evidence in a court of law. And her love shining through it all, triumphant, jeering, condemning. Her actions and the outcome of her actions worn like a medal of honor, the purple heart of parenting, pinned to her chest, evidence of her supremacy.
I could no longer hold back my tears. My tears, physical expressions of my inadequacies. As I cried, as the tears ran down my cheeks, dripping off my chin on to my shirt, I closed my eyes and felt all those feelings of pain, of sadness, of shame that had nothing to do with autism, but are feelings I carry around, despite how hard I try to get beyond them, feelings I have had my entire adult life, long before I became a mother. Those feelings of not being good enough, not being worthy, not being pulled together, not having all the answers. Those feelings of being “less than” all of them came bubbling to the surface. Those biting words from that commenter cut through the fragile dam I so carefully constructed for myself.
“You accepted… I fought…”
I am better than you. My love is stronger, better… I love my child more than you do.
This is bullying. Words used to personally attack or intimidate another person. It makes us think we are not as good as someone else. For me, her words took me back to all those years when I believed all those parents who spoke with assurance, with superiority, without doubt about something that could not be proven or even replicated, stories that are not based in any science, but are “one offs”. All those false hopes I had and mistook for the real thing. False promises that lead me down a path of tremendous pain, ultimately harming my daughter far more than helping her. The biggest strides I’ve made that have positively impacted my daughter are when I was able to completely accept every aspect of Emma and put down the whip beating me to change her neurology. This is not to say we do not do everything in our power to help her learn, teach her to care for herself and try to give her tools she can use to flourish.
Richard said to me the other day, “Parents are spending all this time and energy trying to teach their kids to be normal, when they should be teaching their kids how to be themselves.”
My husband is brilliant.
Emma – September, 2012