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.

Blessings Counted

Feeling so humbled and grateful to have had the right people in my child's life, at all of the right times. I spent two hours in a council with some very brave parents tonight, discussing all of the ways that our state is failing our children, and facing the overwhelming question of how to turn things around. The possibilities are still nebulous, but you've got to have at least a little spark of hope when a council head has the humility to look at a room full of autism parents and say, "I'm not the expert in this room. You all are."

Two hours is time enough for a lot of sad stories to be told, though. Each parent's testimony was both heartbreakingly similar, and miles away from the next one--and worlds away from my own.

Hug your babies a little tighter tonight, guys. There is always--ALWAYS--someone in a worse place than where you are now. And to all of the teachers and therapists in C's life - thank you. Every second mattered.

School

My Facebook status last night:  

The Great School Open House event of 2014 is done. 

1. Thank the good LORD for a kindergarten teacher who remembers me (and my anxiety about [Little C]) from TWO YEARS ago, and demands that he be transferred to her class at the last minute. I almost cried all over her, y'all, and it's way too early in the year for that much crazy. 

2. Note to self: increase budget for teacher appreciation week. See #1.

3. Next year, I am strapping school supplies for two kids to my back like a SHERPA, rather than staggering into school, in a dress and heels, carrying multiple overstuffed bags...then wandering around in search of two classrooms located in polar opposite directions. Better yet, I shall train my kids as tiny sherpas.

5. Moving from here to there to everywhere else with two kids constantly in motion and going in completely different directions is very overwhelming.

5. This was just PHASE ONE, and it's gonna be a small miracle if I survive this week...but so far, so good.

Now, somebody get me cake.

It was sort of the epitome of an autistic kid's nightmare, although ironically, I was the one who had the biggest anxiety issues.  For an event organized by *teachers*, the whole thing was remarkably unorganized, but I suppose there's always something to quibble about.  We checked the teacher assignment board, my heart sinking as I saw that little C's assigned teacher was not who I'd hoped she'd be.  I was praying that we'd get Big C's kindergarten teacher, a woman I already knew and was able to talk freely with - a woman I'd discussed Little C with eons ago.  No such luck, apparently.

Still, we made our way to Big C's classroom first, only to find that he was (temporarily) teacher-less as the school was working on hiring a replacement for his class.  Okay, fine.  I can deal, he knows the sub, we're gonna be fine.  Breathe.  Supplies were (thankfully) dropped off, chat and well wishes were exchanged, and we soldiered on, one school supply load lighter.

Our second stop was Little C's classroom.  We'd talked about this, y'all.  We'd talked buses and classrooms and lunchroom behavior and bathroom breaks and staying in line, and now he was *finally* strolling through the halls of this much anticipated place, wide-eyed and bursting with excitement.  We arrive at his classroom, meet his teacher...only to find that she's not his teacher at all.  He belongs in the class *across the hall*, we were informed.

Immediately, I am miffed.  This was SUPPOSED to be well planned, and prepped-for, and special for him--and yes, he was perfectly fine, but *my* blood pressure was climbing by the second, because this is a mess, I thought.

So imagine my relief and chagrin when the teacher "across the hall" turned out to be Big C's kindergarten teacher.  The one I'd talked to TWO YEARS ago about little C.  She'd remembered our conversation, and she'd requested him for her class, but an administrative mix-up in the chaos of last-week-before-school time had resulted him being placed on another teacher's list.  When we talked, she told me laughingly that ten minutes before the doors opened, she'd run across the hall and asked the teacher there to simply send him her way when we arrived.  

I've never come so close to crying all over a grown woman, y'all.  She'd remembered.  And he mattered.  We mattered.  In the end, that's all we needed.

I stumbled through the "here's what's in store and here's your small mountain of paperwork to fill out" preliminaries, we shuffled through the remaining lines and paperwork drop-offs, and headed home.  

The chaos I feared never came to fruition - little C remained calm, (relatively) focused, and chipper about the entire process.  His mom remained frazzled, but all in all, I'm feeling very positive about this year.  Especially with people like his teacher on his team.

Five

Dear Little C,

You're five now.  Five, as in "the age of school" five; five as in, "no longer a toddler" five.  This milestone feels less a milestone as it does a crossroads, now.  Three years ago, I couldn't have fathomed what five would look like on you - I wouldn't, in fact, have been able to push aside the panic to think on it.  Five was too much--too BIG--to handle when you're taking autism one day at a time.

Five, standing on the cusp of your future.  It doesn't seem real, but every day I feel time barreling onward, faster and faster, and I realize that you are no longer the infant depending on me for everything vital in your life.  Nor are you the fretful, overwhelmed toddler in need of our guidance in a strange and frightening world that doesn't speak your language.

You're you now, sweet boy.  You always were, really, but you're coming into it now.  You're more comfortable with what you like--and what you don't--and every day there seems to appear another tool in your toolbox to communicate your what's and why's.  Instead of crying in distress, you pull words from your hard earned arsenal to tell me not just that you don't like something, but what it is about it that irks you.

As frustrating as it sometimes is when you glare and harrumph at me, glaring is precious--it's hard-fought communication.  I treasure your glares with as much fervor as I once prayed for answers as to why--why--my poor baby was crying, without knowing the reason why.

It makes me sad when you declare you no longer want kisses anymore - you request Eskimo kisses instead, and for as hard as you've worked to make yourself understood, I push aside my sadness and replace it with pride in your ability to express yourself, now.  I quietly thrill, though, when you place a gentle kiss upon my cheek in return, though you won't allow me to touch your own.

There are--and will almost always be--times in which I must be Parent, Teacher, Coach - there to push you beyond your self-imposed limits, prod you past your fears, insist upon the Trying instead of Fearing.

Now that Five has arrived, though, I watch the feathers of your wings inch out, bit by bit, and realize that the days of those decisions being solely mine are numbered.  My responsibility to push you to stretch your boundaries is equaled by that of the need to respect your decision when Enough has become Enough.

I don't understand why the smell of meat makes you so upset, but because you pushed yourself to try it anyway, I'll learn to cook your favorite meatless foods.  Peanut butter's practically as good as meat anyway, right?

Three years ago, I took a photo of you similar to this one, and the emotions that filled me at the sight were overwhelming.  I worried for you - we hadn't yet learned you were autistic, and I didn't know what that word did - and did not - mean.  I just knew that  I didn't understand why you did this, and it made me feel helpless.

Three years later now, though, and while you're still doing this--the same "quirk" that first alarmed me--now the sight fills me with wonder.  Your mind is fascinating to me, and a constant treasure.  I am proud that you see things that I don't, however you see them.  I don't need to understand to be proud.

Five

Little C turned five today. Birthdays have always been hard for an emotional mama like me, but this one was a little more momentous than most. He's five. The age at which children go into kindergarten, the age at which he's no longer considered a toddler. He's a kid now, which is hard for me to wrap my brain around.

Raising any child is a bit of a roller coaster, and Little C has brought us a few dips that were scarier than others.

The thing about roller coasters, though? The drops are nerve-wracking, but the view from the top is pretty damned spectacular.

He is funny and vivacious; kind, loving, and demonstratively affectionate. He is smart and bubbly and makes a friend of anyone he meets. He has confronted mountains, dazzled them, and left them bewildered in his wake. He is mine, and I am so proud of him.


Happy birthday, sweet boy. If it's possible to be any prouder of the kid you've become, I can't imagine how.

More than you ever wanted to know about me. No, really.

Tomorrow's my baby's 5th birthday, and I'm trying really hard to distract myself to keep from dwelling on this fact, so BEHOLD. I give you, Things You Never Really Had Any Desire to Know About Me:



What is the last thing you watched on TV? NBC's "Parenthood." I love that show with a passion that borders on irrationality. I spend every episode thinking to myself, "OMG, that is so me." Except I say that about every character in just about every scene, so I'm pretty sure this favorite show of mine may be a strong indicator of multiple personality disorder.


When did you last step outside? What were you doing? I went for a run this afternoon, making a 3.2 mile loop around my neighborhood. I always get a little fluffy in the winter time when it's too dark to run when I get home, so spring is always get-your-butt-back-in-gear time for me. As I have a couple of 5K runs coming up, the desperation level is a little higher than normal these days.


What is on the walls of the room you are in? Paint. And, um, a shadow box with visual rope-tying guides (which seems a little creepy when I say it out loud, like that. IT'S NAUTICAL, DON'T JUDGE ME). I edit and *computer* in my teenager's room while he's away, and his room basically looks like a guy's dorm room. I'm too lazy to care. Go, me.


If you became a multi-millionaire overnight, what would you buy? A new house (preferably with an editing room NOT resembling a dorm room), as well as every L lens ever made.


Tell me something about you that most people don’t know. Well, I think most people I know already know (and make fun of me about) this, but probably the strangest thing about me is my pathological fear of biscuit cans (although I am not alone, I swear). My anxiety issues and fear of random noises combine into a perfect storm of Oh my God, husband, stop chasing me with the Pillsbury doughboy every time I have the misfortune of being near one of those bastards. This is usually at a party or some other random place, as I absolutely refuse to allow anything in a pressurized can inside my house.


Who made the last incoming call on your phone? My husband. Probably. I'm not even really sure, it's pretty much a Facebook/Reddit/Calendar/Email machine for me that I occasionally remember is useful for phone calls now and again.


If you could change something about your home, without worry about expense or mess, what would you do? Redecorate entirely. We built the house, had a baby 6 days after moving in, had another baby, got an autism diagnosis, and then put off decorating indefinitely, so it's kind of a hodgepodge mess. Every trip to crafty friends' houses leaves me with smoldering resentment at my lack of inner Martha Stewart, so my first call would be to an interior decorator to say, "SOS, b*tch."


What was the last thing you bought? Drinks for a friend at a concert. I got to watch her get buzzed, which was basically all of the fun without the worry of addiction or hangover. WIN.


Would you go bungee jumping or sky diving? Hells to the no. I'd prefer my last words to not be "WHAT THE HELL WAS I THINKING?", thankyouverymuch.


If you could eat lunch with one famous person, who would it be? Serious answer: Kate Winslet. She's done a lot of wonderful work for autism, seems very down to earth and not at all full of herself, and I think I'd genuinely enjoy getting to know her. Not so serious answer: Jennifer Lawrence. Pretty sure we'd burn something down. More realistic answer: I am the quintessential socially awkward penguin, so it's probable that anyone I went to lunch with would end up extremely uncomfortable in my presence, as I spent the hour blinking at them and panicking inside.


Which store would you choose to max out your credit card? Amazon: seller of all wonderful things.


Is the glass half empty or half full? Half full, and preferably containing coffee.


What’s the farthest-away place you’ve been? I don't geography well. Is Washington DC further away than Colorado? What about Chicago? One of those is a safe bet.


What’s under your bed? Workout weights. And dog hair.


What is your favorite time of the day? Sunset if I'm outside, night time if I'm inside. The way the house just hushes when everyone is peacefully asleep makes me feel like I'm caught up for about five seconds.


What Inspires you? Brave bloggers. I follow so many who fill my newsfeed every day with personal stories, helpful instructional posts, motivational discourses, or just plain hilarity, but all of them put themselves out there in the wide, wide world of internet scariness on a regular basis to touch others in some way or another. Check out a few of my favs, and maybe write one of your own?


***


Stimeyland, inspirator (is that even a word? Nevermind, I just made it one) of this post, rockin' fellow autism mom, and brightener of many of my days.


Jess, at Diary of a Mom, who has helped me fumble my way through parenting a child on the spectrum, and toucher of the minds and hearts of autists and those who love them.


The Bloggess, who needs no introduction, but whose words both inspire and delight, as well as resonate deeply with me in so many ways. (Also, Knock Knock, Motherf*cker.)


Glennon at Momastery, who's just indescribable. Funny and irreverent, but also reverent and flawed and oh-so-much-me. Check her out!

The Birth of a Future Marriage

Last weekend, Big C had a Cub Scout event to attend with his friend B, which meant Little C tagging along and playing with B's little sister to pass the time.  Luckily, he and said little sister are fast friends.

Said little sister is ALSO a little bit of a diva-in-training, and loves to do all things girly.  She's forever hauling Little C off to play this or come see that, and talks his ear off along the way.

Generally, Little C is a good sport.  He loves everyone, and just about everyone loves him, so he's willing to go along with just about anything.  He humors Little Sister a lot (tolerance is something he mayhap learned out of self-preservation in this house.  Who knows about these things, really?)

So I was happily snapping photos at the event last weekend, and noticed Little C and Little Sister sitting and happily talking, being all friend-ly.  I still get a little choked up sometimes, seeing him play with actual friends, that I sort of habitually snap photos when I see the magic in action - partly to preserve the  memories, partly out of some irrational paranoia that his social skills will one day go poof and I'll need hard evidence that they ever existed (I didn't say I was a particularly rational person, now did I?).

Y'all.  I didn't realize the gold I had obtained with these photos until later.

BEHOLD: The funniest and most true-to-life photos I have ever taken.

 











You're welcome.