Day Three

Today I slept in. Today I painted my toenails. Today I wrote three pages, finishing a chapter. Today I--most shocking of all--took a nap.

Freakish things like this just *don't* happen in my world. Ever.

Nick had a good day. A wonderfully uneventful day spent playing, sitting up against mom on the couch, reading books, and eating.

Ahhh.

Nick is calmer, more content. But he's still Nick. Retaining his "Nickness" is something I was thinking a lot about today when I was writing. I was working on a passage about Ari Ne’eman and the rhetoric of war in the autism debate. On one side we have Ne'eman speaking of his concern that "curing" autism is a form of genocide, and on the other side we have Jenny McCarthy and Autism Speaks waging war on autism. I know that by choosing to medicate Nicholas that I've jumped into a battlefield.


I don't want to erase who Nicholas is. His autism is part of him and it has a unique beauty. I love the way he gets things he's interested in right in front of his eyes and deeply examines them. I love that he wants to drink in every sensory experience far more deeply than most of us ever imagined possible.


But I also like that during the past two days it's been my eyes that he's been drawing close to his and absorbing every minute detail. I like that he'll squeeze me to get the sensory input that he needs, but not squeeze so hard that it hurts.  


Ne'eman says we should focus on quality of life instead of cure, and I hoping my choices will do just that for Nick, give him the quality of life he deserves. 

I'm going to step into the vaccine mess

Sometimes being in the autism community is like living in Port Charles or Salem--we've got as much drama as a soap opera.

Maybe you heard the news a couple of weeks ago, the news that stirred up all the drama and fighting all over again. Dr. Andrew Wakefield, the British researcher who published an article linking the MMR vaccine to autism, had his work retracted by The Lancet because of some unscrupulous research practices.

The publishing of the retraction might as well have been a bell ringing at a boxing match because as soon as many people within the autism community heard it, they were ready to rumble.

The community has been polarized, and viciously so. People on both sides are calling their opponents ignorant nutjobs. And it's everywhere I go in the autism community--on blogs, on listservs, on Facebook. People everywhere are writing angry, impassioned messages about how stupid the other side is.

I think, perhaps, the way this is playing out is demonstrating something about the roots of autism that Wakefield's research didn't address--that autism has genetic links. In these autism moms and dads, I see mindblindness, black and white thinking, and social impairment that are all indicative of the autism spectrum.

I can understand the people on both sides of the debate. Wakefield's research practices run contrary to all the ethical principles I adhere to as a researcher, and I am deeply concerned that medical journals do not require the authors of studies to disclose their financial stake in the research. (Ethics are incredibly problematic in medical journals: click here and here for stories from NPR.) And, honestly, before autism hit my boys, I thought that parents who assumed their children's autism was linked to vaccines were just grasping at straws to try to explain away (and blame away) their children's illness. Then my little Nick was born and had some auto-immune issues. He was on antibiotics pretty much constantly throughout his first year of life. Then he went to his one-year check up. He got all of his one-year shots, plus a flu shot . . . plus all of his nine-month shots all over again because the float pool nurse who got pulled in to cover that day didn't know how to read an immunization chart. About a week later, Nick had a dangerously high fever that even had the doctors scared, and then he lost so many of the skills he'd gained in his first year--waving hello and goodbye, kicking a ball, speaking a few words. About two years later, when I took him to a specialist who ran every test imaginable on him, I found he was *still* fighting an active measles infection.

Here's the thing that makes me sad: so many people will only read half of the above paragraph. They will see my critique of Wakefield's research practices and assume I'm one of the evil people after their savior, or they will see my narrative about Nick's post-immunization horrors and call me a loon for even thinking the shots and the regression could be related (even if medical tests showed an active measles infection).

As a scholar, I am passionately committed to what Krista Ratcliffe calls "rhetorical listening" or what Mark Osteen calls "empathetic scholarship." I believe that in order for us to make any progress, we need to listen to one another and understand one another's positions. In my scholarship and in my pedagogy, I make strong calls for such rhetorical listening; I demand that the neurotypical listen to and respect the neurodiverse. I find it sadly ironic that the neurodiverse and their advocates are failing to listen to one another.

And so here is what I propose: shut the hell up. Everybody. Stop calling each other names and listen, truly listen, to what others have to say. That is the only way that we can find a shared common ground that can be a true basis for change.

Putting the key in the lock

Our world is based on words. They are the way we share our feelings and fears, our hopes and needs. Whether they are signed, written, or spoken, they are the way we communicate with one another.

But imagine that you never understood that words were communicative. You spent your life around them, and maybe even used them to label things in your environment, but you never understood that they could be used to convey your wants and emotions to others.

Imagine that, and you know what life has been like for Nick.

Nick is almost five years old, yet he'd never made the developmental leap that infants master: understanding that the sounds one makes are a way to influence those in the world around him.

The irony isn't lost on me; here I am, the writing teacher who believes in the ultimate rhetorical power of words to shape and change the world, and my own son is oblivious to the power I preach.

But Nick got it today.

It started on Thursday when Jerrud was working with Nick. Nick usually uses PECS cards to communicate, but when Nick was wanting chips, Jerrud was pushing him to say the word. "Chhhh-ip," he modeled for Nick.

For some reason, Nick decided to go ahead and copy Jerrud. And magically he was rewarded with the chip he wanted and lots of praise.

Nick didn't think that was so bad, so he played along again. And got his chip.

He started putting the pieces together: "I say this group of phonemes, and someone gives me a chip. Cool."

Friday, Saturday, and Sunday we practiced the word "chip." Sometimes I'd manipulate the situation, getting chips and then asking him what he wanted as he drooled over my stash (actually, that's also how I taught him to use his first PEC, which was a chips card). Other times he'd request chips all on his own, bringing me his chips PECS card but saying the word when he made the exchange.

Today, though, Nick learned to transfer the skill he learned with the word chip to other contexts.

First it was "pretzel." But the cutest imaginable version of the word *ever*. It was more like two words, actually: "Pweh. Zil!" After some frustrations, he deftly navigated through the linguistic landscape, saying "chip" when that was what he wanted and "pretzel" when he wanted something different.

Of course, salty snacks make a child thirsty, so how about some juice? I filled his cup with apple juice . . . and he said the word when he wanted Jerrud to give him the cup! Awesome!

So we spent the early afternoon cycling through these three words when I got curious. What else would he say?

I brought in a 16-ounce bottle of Coke, which he loves. I gave him a choice between the apple juice and the Coke. "Nick, what do you want?"

"Co," he answered.

Sweet!

I hunted down a bag of M & Ms, and my child asked for the candies, over and over and over again, by saying "M" (this worked for me; I mean, there's just one "m" on the candy so why should I make him say two of 'em?).

Next I brought him some cookies, and again, success.

Nick has had some language since he was one year old, back when he'd read the letters and numbers off the license plates of cars. He's babbled in his own language, and he's labeled things in his environment as he attends to them. But his words only reflected context. Today, though, my son became a rhetor and learned about audience and purpose. He realized that he could guide his audience (me) to a specific purpose (to get him stuff he wanted).

How many times I have drawn that tired old triangle on the board in my writing classes, telling my students how important it was that their message take into account audience, context, and purpose? I preached it for years . . . but I never really understood its significance until today, when my child finally put all three together and opened a door to a new world.