“You thought my autism was hurting me and that you needed to remove it, but you did not understand that it is a neurological difference and fear caused you to behave with desperation.” ~ Emma on the topic of the three stem cell treatments we did in 2010
This post had to begin with Emma’s words.
I’ve written enough to fill a book on fear and where that took us. Stem cell treatments, spending all night on the internet searching for the next great “miracle” cure, taking my child from one specialist and doctor to the next, this is where fear took me. I’ve deleted a great many posts where I express my tortured fear, but if you go to the first post, the post that began this blog almost four years ago, you will see in excruciatingly slow detail where fear took me. Fear caused by those “alarming statistics” used ad nauseam by organizations like Autism Speaks, drives many like me to go to incredible lengths to “help” our child. Blinded by abject fear we pursue things that can cause our children real harm, both physical and emotional. The toll our fear can take on our children cannot be overstated.
I abhor Autism Speaks. As the single largest organization claiming to know what autism is and is not, and worse, suggesting they “speak” for autism and those who are Autistic, Autism Speaks does more damage to my Autistic child than any other. They have done a brilliant job marketing fear. For transparency’s sake they should rename their organization ~ Fear Autism. Donations pour in, large companies lulled into believing they are “helping” give their support. Autism Speaks uses so much of their vast resources to hurt my child and Autistic people with that fear; what little good they accomplish in other areas in no way can counter the long-lasting and devastating damage they have done and continue to do to families who live in the kind of fear we once did.
I’ve written a great deal about fear on this blog, such as this post where I wrote about what I once believed:
“What did the future hold for my daughter? How was she going to get through life? How would we be able to keep her safe? How would she fend for herself? Would she be able to fend for herself? Who would take care of her once we were gone? Fear. Fear. Fear and more fear. And then, without even realizing it, I would find myself furious. Enraged. And my rage found the perfect target. Autism. Autism was what I was furious with. Autism was what the problem was, so it stood to reason that if I could remove it, all would be well. So this is what I set out to do. Except that my daughter happened to be Autistic. But if I didn’t say it that way I could continue to separate the two. I could continue to tell myself I was fighting the autism and not her. I could continue to believe that my anger with autism would not affect her.”
And this post where I wrote:
“When my daughter was diagnosed with autism, my fear of institutions was the one fear, outstripped by any other, that brought me to my knees. For years it was this vision, that horrifying gothic institution, dark and forbidding that I became convinced would be the inevitable conclusion of not my life, but hers once my husband and I died. It was this looming image in my mind that made me hurl myself headlong into various remedies and treatments. For years I felt sure that anything we could do to save her from such a bleak future was surely a worthy goal. It just never occurred to me that what I thought was inevitable was not. And this is where I thank my Autistic friends for courageously sharing their stories with the world. Because of them, their lives, their stories, I no longer believe this is my daughter’s inevitable future.”
Richard and I live a very different life than we did just three years ago and it is all because we stopped being afraid. If you think, even for a second that we stopped finding ways to support our daughter, encourage her, cheer her on to be all she can be, then I encourage you to read the last six months of this blog. These last six months, specifically, show how Emma has increasingly taken over this blog, just as I once did not dare dream possible. It is her voice that sings out, every day a bit louder, every day more powerfully, every day…
A few more posts on Fear:
Love Not Fear. Tomorrow is the Love not Fear Flashblog.
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