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.

Sweet, sweet dreams

"Drop me on the bed," he begs.  It is a ritual that has remained constant since he was able to utter the request.  I snatch him up in my arms, and--as I have done for more than the two years since those blessed words have come--hold him in wriggling anticipation over his mattress.

A knuckle finds his mouth--an action that, for him, signals excitement, and he giggles.  The sound makes my heart happy.

I hold him suspended for a second longer than is necessary, knowing that these days are numbered. Soon, his lengthening limbs and increasing height will finally overpower my maternal urges, and I will no longer be able to lift him.

That day is not this one, though, and when anticipation has turned giggles into belly laughs, I drop him onto his bed, laughing with him as he bounces.

He settles himself into position for the night ahead, with nary a protest.  My baby loves his sleep, and always has.  

"Just blankie," he declares, and I cover him lightly with the baby blanket that he has remained attached to for as long as I can remember.

When winter comes, he will allow the colorful sheet and comforter that make up the rest of his little nest, but even then only in one order - blankie, sheet, covers.  No deviation.

Because I know how hard he works to acclimate in the rest of his daily life, I don't push, and follow along with the routine.  Social expectations are one thing, but I am determined that he will feel free to find comfort and security in whatever routines he needs to when he is home.

I kiss he and his brother goodnight, and he declares solemnly, "I won't wipe your kisses off, Mom."

As I turn off the light and let the door latch snick closed behind me, I hold those words close.  They don't sound like much to most--but I know how precious they are.  I know how hard communicative speech was to learn, and how precious spontaneous speech was when it came.

I can start my own winding down now, and pick up my tablet to browse the news of the day.  Sifting through Hollywood gossip, photography articles and the various detritus in between, I stumble on a Reddit post discussing the recent rise in measles cases due to declining vaccination rates.  This does not come courtesy of the various autism news feeds I subscribe to, it's just there--on the front page of a crowd-sourced news site that millions visit each day. 

It's gladdening to see these articles come to public attention--I sometimes wonder how much my own little bubble actually has to do with the "outside" world.  This is important to me, but does anyone else see this?  Is the significance of a horrifying number of children being needlessly affected by a preventable and serious disease lost on the rest of the world?

As the current top comments on the article are pretty vitriolic concerning anti-vaccine advocate Jenny McCarthy, I have to think that my sentiments are shared.

While it is good to see the public outcry, it is also saddening.  Comments rage against McCarthy and Wakefield and "stupid hippies," and all I can think about is the significance of those numbers as they relate to autism hysteria.  Although measles is a potentially life-threatening disease, and the rate of contraction is higher than the supposedly-vaccine-related autism case numbers, 92% of cases were found in children with no history of vaccination, or unknown vaccination history.

The parents of those children, at some point, chose not to vaccinate.

Autism has, in essence, become such a horrifying prospect that it pales in comparison to a disease that once killed children en masse.

My son's autism is not horrifying.  It can be confusing, frustrating, even scary sometimes, but it is not horrifying.  In fact, it is sometimes just as confusing, frustrating, and scary as parenting my typically developing child. 

Different, perhaps, rougher in patches--but by no means so horrific a prospect as to risk death or life-long medical ramifications.

I know my child is only one child, with one unique version of autism.  I know there are parents of disabled children who struggle mightily every day, much more than we do, and wish that they could go back in time and change something--anything--that may make their baby's life less of a struggle.

I get that desperation, that fear.  I do.

But here, on the other side of our autism, I'd take my healthy child with autism struggles exacerbated one hundred times over against even the remote possibility that I wouldn't have one heartbreakingly beautiful little boy, promising to never wipe his mama's kisses off at night.