Saturday, February 7, 2015

A Thousand Ways I Love the Autistic You

A Letter to 18-year old Little C:

Hey, baby.  You're so little now that it's hard to wrap my brain around the thought of you reading these words someday - sitting in front of a computer, or whatever the world is using to consume information then.  You'll be an adult (or mostly one, anyway) by that point - a fully-formed human being that your father and I had the almost sole control of forming. That's a scary thought, kid - one that you'll understand when you're a parent one day yourself.

By the time you read this, we'll have made many, many decisions in the raising of you - some good, some not so good, and some that turned out better than expected despite us just doing the best we could, while having no idea what we were doing at the time.

A lot of parenting consists of that latter bit, by the way.  Just for future reference.

You're getting older now - second by second, it seems - and with your increased understanding of the world around you comes the urge on my part to get some things down on record, just in case you should ever doubt them. Hopefully we've made enough good decisions collectively that the reminders in the following paragraphs won't be necessary, and you'll be shaking your head in amusement at me by the end of this.

It still startles me sometimes, how you are always listening and observing the things that go on around you, even at five - and even when I think you're not paying attention.  Sometimes your brother and I or your father and I will be having a conversation with you sitting right next to us, and you're playing with cars or are absorbed with one of the various electronic devices of yours that I'm forever tripping over (I do hope that you've gotten better about picking up after yourself by now, by the way), and I'll think you're not listening.

Days later, though - weeks and months, YEARS later, even - you'll circle back to that conversation, sometimes recounting it with uncanny detail.

You're always listening, always absorbing.

For the most part, that's a good thing.  Right about now, though, it's pretty scary for me. It's scary because for the last few weeks, the media has been consumed with a recent outbreak of measles in un-vaccinated children, and the resulting conversation has lead, inevitably, to the topic of autism.

It's been a roller-coaster ride for me, babe. I am glad of the shock value the case numbers are having, while at the same time being saddened by the fact that it is has taken innocent children becoming sick to force parents to re-evaluate their decisions on vaccinations. I'm frustrated that science and doctors and all kinds of people a whole lot smarter than the the dissenters have been proving over and over and OVER again that vaccines don't cause autism, but parents have still chosen to plug their ears and la-la-la their way through critical medical decisions in their children's lives.

I'm frustrated and angry and sad because they are so scared of autism that these parents are saying - in actions if not in words - that despite all research and common sense indicating that vaccines and autism have nothing to do with one another, they would rather their child die or be debilitated than have autism.

I worry that all of the work that your father and I have done to build your confidence in yourself and pride in your differences will be for naught the second you hear someone - on TV, in passing conversation in the grocery store, SOMEWHERE - say that their child wasn't vaccinated because they heard that vaccines cause autism.

We can't really blame them, baby, for the way that they say the word. The world is still in large part ignorant of the intricacies of autism right now, so people usually say "autism" in one of two ways: in hushed tones, as if it is a mysterious, communicable disease; or in horror, with visions of the scare tactics that are the Autism Speaks commercials in their heads. They say it this way because they don't know any better, baby - not because any of their fears and prejudices are true. They haven't met you, or giants like Temple Grandin, or Sarah Kurchak, who based on this bit of writing is pretty much my favorite person ever right now.

They don't say it the way you do - with casual acceptance, in a matter-of-fact tone that makes me smile every time. The way you say that word is as unique as you are - "Au-TIZUM", you say, the same way every time. I sometimes feel as if you've staked your claim on your own interpretation of the word when you say it, linguists be damned.

You'll never hear a correction from my lips.

Anyway, kid, your rambling mom is going to come to the point now, and this is the important part - the part I want you to always, always remember:

I love your autism as much as I love you, and I wouldn't change it for the world.

It's not a dirty word, it's not something that's "wrong" with you - it's the magic that makes you you.

I love the way that it makes you confront the things that are hard for you with dogged determination, and the way the possibility of failure at hard things doesn't even occur to you.

I love the way it makes you just a little bit smug about how good you are at the things that autism makes easy for you.

I love that although it makes it difficult for you to understand WHY you need to thank Mom for cooking something you didn't like, you say thank you anyway because you love me with enough ferocity that being "right" doesn't matter as much as it otherwise might.

I love that everywhere we go, you are always the friendliest person in the room, and are one of the kindest people I know - preconceived notions of social awkwardness be damned.

I love that not a day goes by that you don't make me think, and challenge my perception of the world around me.

I love the way that autism makes you love patterns, leading to a bedtime cover-up routine that hasn't changed since you were a baby - making the smell of freshly diapered bottoms and visions of a sleepy baby face come back to me every night.

I love the way that you sometimes can't quite find the word you need, so you pull the next best thing out of thin air - often resulting in hilarity.

I love the way that you tell me goodnight with the level of passion that indicates you are about to go off to war - every single night.

I love that your literal mind has made me recognize the absurdity of the English language, and made me laugh countless times.

I love that the way you look at the world is fodder for social media posts that change the perspective of people who otherwise would remain uninformed about autism.

I love that last part most, baby - that you change people.

You're only five now, and there may be rough times ahead, as there would be for any kid - but I hope that you never stop changing minds, and that you never stop challenging perceptions.

There are more than a thousand reasons I love the autistic you, kid, although I've named only a few here.

But I'm still counting.