Wednesday, March 23, 2011

The Dictatorship

The folks at Parents magazine, after being hollered at by a number of parents for NOT having an issue dedicated to Autism for April, have opened up a request for blog entries to describe life with Autism. You can follow that link here... so here was my attempt at 500 words. (yeah right)

I was trying to figure out how to describe our life with Autism, struggling to find the analogy that fits our life. Then I turned on the news and realized: living with Autism is like living in a country ruled by a crazy dictator.

Now, I won't name names here, but the headlines have been full of certain leaders with questionable wardrobes and domestic policies that make us all scratch our head in wonder and rage, “Who is this guy, and how can he have been in power for so long?!?”

You see, for the most part, our world seems like any other. We get up everyday and get ready for pre-school. My son greets the bus driver with a giant smile. After school he enjoys a classic PB&J and watches Blues Clues. Like any other kid, right?

Except that the morning routine must be adhered to with utmost strictness lest we fall prey to a near-nuclear meltdown, his bus isn't quite as long, his sandwich must be cut into exactly four squares, and there are only one or two episodes of Blues Clues he will actually endure.

On some days even the strictest adherence to this despot’s routine won’t make the frustrations, screaming, and violence go away. Other days can be a maelstrom of sensory overload, communication issues, and absolute frustration with life—a veritable crowding of the city square to protest this disorder and its inequities. And you never know when that dictator is going to open fire on his own people, terrorizing your world while leaving the rest of the planet gob smacked. One day is fair and sunny, with sweet, charming smiles and Lionel Richie concerts, and the next day you will be accused of adding drugs to your Nescafe and practicing sedition.

Seriously, you never know what Autism is gonna bring.

So you learn to live simply, in the moment, learning to rebuild quickly because you also know that each firefight will have an end, and you'll still be the wounded soldier making the hummus in the morning while HE wakes with a cheery smile, not even recalling last night’s uprising.

In those quiet moments when Autism finally sleeps or retreats, you sit and hope--hope that SOMEONE will recognize what you are living through and help. That if you wave your flag enough, the rest of the world will stand to attention and start launching their missiles to help get Autism under control. That if you make your struggles known to other parents, they might occasionally have enough empathy to stop building that new addition to their royal palace just long enough to help you keep one wall standing.

This is what we are fighting for, waiting for, praying for; that some sort of UN coalition will recognize our struggle and raise their voices as well. 1 in 110. That's how many American kids have Autism. And Autism isn't just something that will go away. Those diagnosed, like my son, will struggle with this for the rest of his life. This dictator will not be unseated by an invading force and a no-fly zone. But with the right supports, and worldwide awareness, we can get him under our own control. In the end, that's all we want--a few more hands to make easy this burden. A research donation is nice, but what we really need is empathy and offers to help just a bit; to arrange a play date with your neuro-typical kid or just drop by to help fold some laundry and share your war stories with someone outside your bunker…and to not judge us with disapproving glares and remarks when my child sometimes cries more than you find appropriate.

A little help can make a big difference to a parent who’s already digging deep to give more than they can. Enjoy the roof of your beautiful palace during the rain, just once in a while notice that we still only have one wall standing.