Today I saw a video that told a story about autism. But it wasn’t my story, or my boys’ stories, or my family’s story. And it really pisses me off that people are going to watch this and possibly think (assume) that this is our story, our life.
I’ll let you watch it.
I couldn’t even get through the entire thing. I showed Hubby, who just stared at it gape-mouthed as we watched it in the kitchen so that the boys couldn’t hear. (Can you imagine them watching that? “Mommy, did I ruin your marriage?” “Mommy, do I make you cry every day?”)
Our life is not all roses, but it isn’t all gloom and doom either. One of the reasons we have not ‘failed’ is because we have made choices to balance us. Our life is meaningful. My boys’ lives are meaningful, and dare I say enjoyable! We certainly don't live the status quo, nor do we want to. We certainly aren't indistinguishable from other families, nor do we want to be. People's perceptions of our children negatively effect them and us much more than their disabilities do. And videos like this certainly don't make perceptions change for the better.
Our Autism Speaks walk is coming up soon. In the past I have had very conflicted feelings about this walk since I pretty much can’t stand the organization’s scare tactics. But I have walked to support my friends and their families more than anything else. I don’t know if can do it anymore. I can’t just write this off as “fundraising” anymore or ignore it while I support my friends. I can’t ask friends or family to donate to an organization that makes my children look like they have some deplorable, deathly communicable disease that is spreading through the air. Nor can I in good conscious make my children participate in the walk, enforcing a message that they had no part in creating.
I feel lost tonight, shaken, dejected, hollow, battered. I may cry. I may lose sleep. I may feel scared, overwhelmed, and helpless. But it’s not because of Autism. It’s because of Autism Speaks.