They came fast and furious, one right after the other. Two comments on an old blog post titled Why Autism Sucks: A Parent's Perspective.
“You are so anti-autism!” they cried. “How dare you?”
I had just posted a piece on the many alternative treatments we have used to help our daughter with her sensory processing disorder. People were commenting left and right, "You're such a great mom" and e-mailing asking for information on how to help their own children. I was feeling pretty good?
I published the first comment. It took a few beats for my brain to register what this person was trying to convey? Was this a joke?
It wasn’t a joke.
I deleted the second comment, but was I ever in for an education?
In my quest to share our experience with others, I had offended someone, possibly many.
It never occurred to me not to try to rid her of the debilitating anxiety that holds her back. It never occurred to me not to help her improve her delayed fine and gross motor skills. It never occurred to me not to help her with her sensory bombardment issues or her messed up bowels. I was truly shocked.
Mulling it over and over in my head, I finally was able to ask myself how it might feel, if I were autistic, to come across a mother who is working her butt off to make her kid, “not like me?” My stomach dropped and tears welled in my eyes.
When I was a young reporter in DC, the deaf students at Gaudulet University were up in arms about the new cochlear implants. With fury and hurt in their eyes they held up protest signs telling the world, “We’re okay the way we are!”
In my efforts to help her am I sending Riley a message that I don’t accept her?
My friend Kirby has cerebral palsy. She is also a recovering addict, sober for over 20 years. She is an addictions counselor and a peer on the spiritual path that I travel. Kirby is one of those people who “get” Riley. No need to explain, just total love and acceptance of her. I knew I needed to talk with her about all this.
When I tell her what’s going on she says, “I don’t think you are trying to rid Riley of autism, are you? It’s one of the things that makes her so amazing. She’s so wise, unlike any six year old I’ve ever met? You don’t want to rid her of that, do you?”
I have to think for a second.
Finally I say, “I want to rid her of the anxiety she experiences so that she can get through the day. So that she can share who she is. I want to rid her body of mercury poisoning so that she isn‘t run down and weak. I want her to be healthy, but I don‘t want to change who she is or how she thinks.”
“You’re trying to get rid of the symptoms, not the autism itself.”
“Like my alcoholism. Alcoholism is good, if you aren‘t using. It’s a gift that forces me to seek spiritual growth every single day of my life. There is no way I’d be doing that if not for my addictions.”
I think back a few months, I’m sitting with Riley at the kitchen table, while she eats her favorite snack. A wooden bowl full of peanuts, raisons and pumpkin seeds sits in front of her and she asks,
“Mommy, am I autistic?” The question takes me back, but I shouldn’t have been surprised. She hears everything.
I tell her about autism as best I can.
“Some autistic kids can’t talk. Many are super smart. Most have very sensitive ears. Sometimes they have a hard time because they get overwhelmed.” I list all the things I can think of and then ask her, “What do you think? Are you autistic?”
In true Riley form she takes a long pause and then says, “ I think I’m a little bit autistic.”
Shaking my head, I smile, amazed at this tiny person in front of me.
Since these blog comments a couple of weeks ago, I've been thinking about language and the intention we put behind our wishes. The DVD The Secret does a great job of explaining that what you fight against persists. We should never be “anti” what we don’t want, but “pro” what we do want. I think about our association with DAN! (Defeat Autism Now).
If I’m autistic, even just “a little bit,” do I want to be defeated?
I am a work in progress and I am learning. Many gifts come from it, but autism IS very hard on a child and on their family. Every parent has to make the decisions they feel are best for their children. I don’t believe we would change anything we have done to help our daughter but I am truly sorry that what I’ve written has caused you pain. I will surely be more sensitive and I thank you for opening my mind and my heart to these questions.