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.

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.

The Hardest Thing

I'm a person whose mind never really stands still.  If I am waiting in a line somewhere, my phone is usually  handy, and I am browsing my news aggregator.  Rather than close my eyes and drift off at the end of the day, I have to read myself to sleep.  My Facebook and Twitter feeds are filled with family and friends, yes, but is overwhelmingly comprised of various sources of information - news, forums, groups of every sort.

I like to think that this information broadens my horizons, informing me and stretching my mind, exposing me to points of view I may never hear in my regular circle of acquaintances.

I came across this link today in my news feed.  In it, a pediatrician discusses their decision to not accept patients whose parents choose not to vaccinate them.

This may sound shocking at first blush, I know.  Shouldn't a physician be impartial, non-judgmental, thinking first of the needs of the child without standing in judgment of the adults who make the decisions for him?

The words rang true to me, though, and reiterate what I've slowly come around to in my own life.

There is little point in arguing with those who choose not to vaccinate.

Don't get me wrong - I understand that there are legitimate medical reasons for vaccination refrain in some cases - compromised immune system, tendency to severe reactions, and various others.  I'm not saying that vaccinations should never be refrained from.

I just don't believe in making uninformed decisions out of fear.  I believe that I have a responsibility to my child to choose a doctor in whom I can place my trust, and to respect the opinions of a professional trained in a field in which I am not.

If my child were born with cerebral palsy, or spina bifida, or contracted malaria, for goodness' sake, I would bring him to a doctor.  What I would not do, however, is patiently let the doctor lay out the facts and course of treatment, all learned during years of hard study and practice, then politely decline to acknowledge or implement any of it.  I would not bristle and accuse that doctor of ignorance of "studies" I'd read about on Wikipedia, or heard espoused from a celebrity's mouth.

I would look at this professional who had spent countless hours studying and putting in clinic hours, and shadowing, and learning the names of chemical compounds I would never be able to pronounce on my best days, and I would listen to the words he had to say.  I would acknowledge that although I know and love my child, this is the first time I have ever seen this illness--and that having seen countless children pass through his doors, it is possible that this professional's knowledge of it is greater than mine.

I would keep in mind that while I am an expert at my job, so too is he an expert in his.  And I don't read medical textbooks for mine.

It is difficult for me to understand, then, why parents choose to adopt this attitude when it comes to vaccines.  It is ludicrous for me to think that because I gave birth to my children, I then automatically understand the inner workings of their bodies and minds.  I love them, but there is not a day that goes by in which I do not look at them and feel hopelessly unprepared to parent them--unprepared for being the guiding light in their lives which helps to shape them into the adults they are to become.  And that's good, I think.  The moment we as parents think that we have it all figured out is the moment in which we fail.  I parent my children for who they are today.  And then I start over tomorrow.

All this is not to say that I do not understand the need we have as parents to know best and fix things for our children.  The hardest lesson I've had to learn as a parent is to let go, and realize that it's not about me.  I still remember the frustration of not understanding why Little C was crying, why he was so frustrated, why he could not tell me what was wrong.  Then I remember the relief that swamped me when we got him into therapy, and realized that they understand him here.  These people, trained to understand how the autistic mind works, got him in a way that I, as his mother, did not.

That was hard.  I struggled with guilt and depression at the realization that these strangers were better prepared to parent him than I was.  I was his mother.  Why didn't I understand?

Years later, I realize now that the relationship of parent to child has no givens.  I don't understand him because I gave him life, I understand him because I make the effort to.  I subscribe to news sources, and peruse articles, and patiently (sometimes painfully) listen to viewpoints that I may disagree with, in the effort to never make a snap decision based on uninformed sources.  I also listen to him, which is a slow process at this point, but is ever evolving.

Until he is able to make decisions for himself, my responsibility as a parent is not just to arbitrarily decide what is best for him, but to make every effort to make informed decisions on his behalf - and in the medical arena, that means choosing a doctor I trust, and listening to what he has to say.

I'm not sure how to end this post, really.  I'm a little sad that the parenting war is so often such a bitter one, and that children so often are the ones that suffer the most for it.


{Helpful Links}

-http://www.thedailybeast.com/articles/2014/01/30/the-real-reason-pediatricians-want-you-to-vaccinate-your-kids.html

-https://showyou.com/v/y-lhk7-5eBCrs/penn-teller-kill-the-antivaccination-argument-in-just-over?utm_source=facebook&utm_medium=social&utm_campaign=timeline

-http://www.reddit.com/r/videos/comments/1whbqn/an_infant_girl_in_intensive_care_with_whooping/ *

*including the reddit link because the commentary there is so often thought provoking (and sometimes not, but worth reading nonetheless).  Original video link here: http://www.youtube.com/watch?v=S3oZrMGDMMw&feature=youtu.be

Mine

Every time I log in here, I'm always shocked that there are even more visitors than there was the last time I posted, because honestly, I've been crazy busy and I know I've been like that annoying girlfriend you had in high school who you only really saw when she wasn't in a relationship, because the minute she'd get a boyfriend, she'd disappear and you'd kind of forget what she looked like for a while.

That was rambling and a little incoherent, but I'm sorry I've neglected you for a new boyfriend, dear readers.

Things have been a little hectic.  I got into this photography thing thinking Who in the world is going to pay me money for this?  Aren't there photographers on, like, every corner now?, and it turns out that yes, there are photographers on every corner, but it's still pretty hard to be a good one, so the demand is more than one would think.  There's a fair possibility that my recent craziness will die down in a few months when I'm no longer the new girl, but for now it's all weddings-and-seniors-and-homecoming-and-bright-shiny-new-lenses-oh-my!

It's been a lot of fun playing and learning and metamorphosing - I've gotten very lucky in finding some great people and opportunities along the way.

One thing about this photography thing, though, is that you tend to take fewer photos of your own life, while you're so busy capturing everyone else's.  I'm not sure if it's lack of time, or perfectionism (grainy Instagram snaps make me shudder now.  SHUDDER, I SAY), but my kids--who were the instigation for all of this lunacy--are now logging fewer and fewer hours in front of my camera.  Using a photo challenge as an excuse tonight, though, I managed to sneak in some snaps of them.

Since implementing an eye contact protocol at the age of two, little C has been relatively good at making (and maintaining) eye contact, for the most part.  When I got my camera, though, I began to notice that the camera's eye was somehow more intimidating than the human one.  He is game, upon prompting, for squinting, saying cheese, and baring his teeth for me...but that's about all that I get.  Maybe part of the reason I don't take as many photos of the two of them is that I dread being forced to face how difficult photos still are for Little C.  After two or three clicks of the shutter, he inevitably declares, "No more pictures, okay?"

It's not really a request, but he has the tact to frame it as one, at least.

For the photo challenge "Eyes" tonight, I couldn't help but be struck by the juxtaposition of my two children.  For one, attention is a natural attraction.  He craves it--is on a constant, inexhaustible quest for it.  Positive, negative, doesn't matter.  Look at me, look at me! is proclaimed in every skip of his feet, every flashing grin.

Little C, though, wants to do his own thing - Things to do, Mom, things to do.  The camera comes out, and while Big C is leaping in front of it, Little C retreats...and my heart breaks a little.  It's a constant balancing act between stretching his boundaries, and respecting his need to feel comfortable in his own home, for me.  In the end, I get photos of him doing what he does--and these are the images I'll have in my head for years to come, anyway.  He is happy here--working hard all day to make the progress he has, I tell myself he deserves to kick back with his iPad and run from the camera when he gets home, dammit.

I guess a photo of my baby's big, beautiful green eyes is going to remain sort of my great white whale for a while, though.

“It is not down on any map; true places never are.” 

― Herman Melville, Moby-Dick; or, The Whale

Dear Cub Scout Leader

Dear Cub Scout Leader Guy,

Hi.  I know were a week late signing up for this whole shindig.  Sorry about that--I'm usually pretty crazy about details, and being on time, and following the rules and stuff.  You'll probably learn that the hard way, so strap in.

But things happened, tonight was our first pack meeting, and I know you were a little blindsided.  True, there were other siblings tagging along on this adventure, but somehow I think you were just a tiny bit unprepared for Little C.  See, what you saw as just another field trip to a fire station was, in reality, sort of this mom's definition of the third circle of Hades.

I really, really wanted this for Big C.  He's great with his brother, really, but he deserves his own space.  As heartbreaking as it is for me to explain to Little C that this is something his brother is doing without him...well, I know Big C needs it.  Time with his friend, B, time (somewhat) away from my own neurotic presence...time to just be Big C, instead of Little C's big brother.

That whole independence thing kinda went out the window when circumstances dictated that I'd have to bring Little C tonight.  It wasn't planned, really, and to be honest, I was dreading the drama of leaving him behind.  Things worked out the way they did, though, and so he came.  To a fire station.  Where there are lots of loud things, and also lots of overwhelmingly exciting things.  Too, lots of children swarming in different directions, and all dressed in the same colored clothing. (Can we talk about that later?  Because really, maybe that could use some reconsideration).

Normally, Mr. Cub Scout Leader Guy, I would be right there with you.  I'd chat, and I'd ask questions, and I'd listen to your patiently explained instructions with a smile on my face.  But when we're in a fire station, with loud noises that could sound omigod-any-second-now, and my kid is so excited about the real life fire truck right there in front of him that he can't decide between omigod-noises-are-scary and omigod-firetrucks-are-awesome-can-I-hug-it-right-now, well...I get an little on edge.

I'm sorry I'm just murmuring vague agreements and nodding distractedly at you, but you see--inside I'm constantly formulating disaster relief plans.  If he screams when the siren goes off, I am ready to snatch him up like a maniacal linebacker and run for the nearest doorway.  Would the one to the right be best?  Or the one behind us?  What would cause the least amount of distraction?  By the time I've worked out that plan, he has risen to his feet while I'm distracted, and his hands are flapping happily.  I can tell by the way that he's eyeing the fire suit that he's decided it's completely acceptable to get up during your little talk and go investigate it.

Normally, he's very good at reading social cues and listening to directions, but there's just too much happening right now.  At my gesture, he returns to his seated position on the designated line next to the well-behaved siblings, but his hands are hovering over his ears again, and I can tell that the possibility of sudden noises has re-occurred to him.  I know I should be beaming proudly at Big C right now, like all of the other parents surrounding me, but I am incapable of anything except shifting nervously from foot to foot, wondering how much longer this will last.

We head out to investigate the truck, and I breathe a sigh of relief thinking, Great.  Open space.  They can walk around now, and he doesn't have to be still and quiet.  The relief is short-lived, though, as he darts from end to end, first investigating the hood, then the bumper, then back again.  All while cars are periodically cruising through the parking lot, by the way.

I alternate between pinning Little C down to walk him back to where he's *supposed* to be, and eyeing Big C in an attempt to ensure manners are being observed.  Fortunately, he is behaving, and I relax just in time for your partner to promise Little C solemnly that if he can find the key to the fire truck, he can drive it.  When she winks at me as he scampers off, confiding that there is no key to the fire truck, I don't have the heart to explain that he thinks too literally to get the joke.  I'm sorry I can't quite concentrate when you explain about the various fees involved, but I'm too busy contemplating how much hysteria would ensue if I started crying at this point.

When the meeting is over, Big C is sweaty, happy, and oblivious...and me?  I'm just tired.  We exchange information and confirm plans for the next event.  I half-heartedly attempt an explanation, and you are very nice, but obviously a little lost.

Um, better luck next time?

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.

Presumptions and Consequences

One of my favorite online people passed this video on today. One minute I was idly scrolling through my Facebook feed, the next I sat stunned, with tears rolling down my face, as I watched that story.

Carly Fleischmann isn't just another individual with autism--she's my child, she's your child, your neighbor's or your best friend's sister's boy, or your cousin's niece. She's as brave as any of them, and all of them put together. She's the adult down the street, living alone and never looking up as you drive by and wave. She's the three-year old at your child's daycare who just wants to stack blocks all day, never playing with others.

Also? She's this kid. The kid for whom--deservedly--standing ovations are given. She is Barb Rentenbach, autistic author extraordinaire. She is Temple Grandin--autistic author, professor, activist, and agricultural world-changer.

Carly Fleischmann's father is me. As he speaks of the long hours spent on methods and therapy and skill-sets and motivation, he is me. When he chokes up as he talks of really hearing his daughter for the first time, long outside of what is considered a "typical" time-frame, he is me.

When his voice breaks as he remembers the time he wasted talking *around* his daughter rather than *to* her, he is me. How much time did I waste, doing things for my son, while hiding behind my fear that he wouldn't be able to do it himself? How many times did I assume that because he wasn't looking, he wasn't listening?

Too many times. I'm still guilty of it, if I'm going to be honest. He is sucked into his iPad--intent on reading, or watching videos, or playing games--as I call his name, and he doesn't look up. I hesitate, assuming he did not hear me, or is just ignoring me. He's not. He pulls his eyes away from the screen--slowly, reluctantly--and meets my eyes.

He would not have done so just a year ago, and certainly not two years ago. TWO years ago, he did not know his name. 

 Today, he is a champion, masquerading as a miracle.

We--all of us--have grown a lot in two years. The therapy, the supports, the routines, the methods were as much for us as they were for him.

As I watched that video once, twice, three times tonight, I kept thinking, This is how it should be.

Help, therapy, learning, accommodation, challenging--repeat.

I live in a state, though, where the Carlys are getting left behind. In the past year, I have spoken with more people than I care to count whose young children needed the kind of help Carly benefited from. All of them thus far have been denied it, in one way or another. Late last month, our governor dealt an even bigger blow to services for the Carlys, and the neighbor's kids, and the 3-year olds in daycares. Our legislators couldn't even be bothered to show up to reconsider it.

The Carlys of the world are not just important to their families. Her progress, and the skills she has fought hard for do not just benefit her--they benefit an ever-growing community that is desperate for change, and even more so for understanding. Carly was able to find her voice--in her own way--and as a result we now have the ability to hear her. Therapists have a better idea of strategies that may work, doctors are able learn first-hand what it feels like when your body rebels against you, and parents--Mr. Governor--parents get to hear their child say "I love you."

Budget concerns seems sort of paltry in comparison to that, don't they?

Gaming the System

All of the sudden, little C is GROWING on me.  Between his youth and the struggles that his autism has brought to the table, he has been dependent on me for a long time.  Part of me relished this, honestly.  His needing me made me feel essential to him in a way that his older brother has long since grown out of.

As little C is my baby, I find myself clinging to his youth, sometimes.  I'm not ready to let go of my baby's baby-dom just yet, although I know it's unfair to him to cling. I've been using his autism as a crutch--a reason to do things for him, to put off teaching him new things, to excuse behaviors.

Luckily, I married a man who's very good at keeping me in check, and even better at raising children with me--an exhausting proposition, at best.  In our renewed effort to treat little C as normally as possible, we've been fighting a lot of battles lately.

Dressing, for example, has been a constant source of stress.  One morning, little C will dress himself from top to bottom without a peep, others we'll be in full melt-down mode because he couldn't get his socks on.  Socks SUCK.

[Enter: Crocs.  God bless you, Mr. Croc Company Founder Guy.]

We've mostly won the dressing battle, although there have been a few mornings when we've had to strap him into his car seat in his underwear, in an effort to follow-through on the If-You're-Not-Dressed-In-The-Hour-We-Give-You-For-Dressing-You're-Going-To-School-Half-Naked threat.

We're nothing if not consistent.

(And yes, he did get dressed once we arrived at school.)

The eating battle, though, we're losing.  Horrifically.

The kid is a slap in the face to the very laws of physics.  You know, the ones that state that food is converted into energy and humans need energy and hence food to survive?

Or something to that effect.  I dunno, it's been years and three kids ago since I was in school.

Whatever.

The POINT is that the kid doesn't eat.  He lives in horror of foods other than processed chicken nuggets (NUGGETS, mind you--not FINGERS, for the LOVE OF GOD), pizza and peanut butter and banana sandwiches.  He will literally starve himself rather than eat something that's not in his lineup of Acceptable Options.

"Oh," you chuckle.  "I remember my little darling going through the picky eating phase."

To which I say, bullsh!t.  I can stand tough on many a things, but seeing my kid burst into stress-tears at the dinner table and planting his hands over his ears kills me.

So many things are going to be hard for this kid in the years to come.  Why the !@$%& does eating have to be one of them?

On the other hand, though, some things are getting better as he gets older.  The independent "Ima do it myself" attitude (you know, the one present in just about every 2-year old in the known world?) has come roaring forth.  It feels largely like something he picked up from kids at school (yay!), and then ran with (boo!).  This behavior asserts itself in very selective ways.  Apparently getting himself dressed is not something that qualifies for said attitude.  Opening the bottle of his nightly vitamins, however, does.

How the hell do you explain the concept of potentially sickening vitamin overdose to an autistic 4-year old?  Anyone?

You see the dichotomy, here.

Mama is tired.  Mama is proud, and stressed, then proud some more, and worried, and so, so bewildered.


Ima start over tomorrow, K?

Home Again, Home Again

As excited as I get about how this photography thing seems to be working out for me, now and again I have a moment that grounds me a bit, and reminds me why I really pick up my camera as often as I do.

You know how when you get a diagnosis, you go through all of those stages of denial, and you start listing all of the reasons he couldn't be autistic to make yourself feel like there is absolutely nothing wrong here?  And then, as you start reading things and meeting other people who deal with the same issues that you do, things start clicking and you're left staring numbly into space because you start realizing that all of the "little" things that you've brushed off for so long actually mean something, and then you feel horribly guilty about everything and you should have known all along?

Just me?

(Nope.  Pretty sure it's not just me.)

Photos were one of those click-y things for me.  Little C's eye contact, when evaluated by therapists, flunked the test--but not horribly so.  With patience and therapy, it came around, and he started really looking at us--checking our reactions when an unexpected situation arose, smiling at us when we'd pick him up at the end of the day.

Photos were something weird, though.  When I was taking snapshots of him, I never noticed that he didn't look at the camera.  It was only after our diagnosis that I became stunned, looking through photo after photo taken since his birth, and ached--because I had an album full of photos with his face turned away, or down, or with him giving me his back.  He was included in one memorable Christmas photo only because the techs at the local studio Photoshopped him in.

They had to snap a picture of him while in my arms, hands planted firmly over his ears.

Since I picked up my "big girl" camera for the first time, I've been attempting to get really memorable photos of him.  While he is comfortable around my camera, he's still not overly enthusiastic about looking into the lens for me.  His eyes dart up and down, left and right, and while I know that if I set up a protocol for him--set parameters for success, and all of that--I could probably get him to smile and say cheese...I don't really want to.

While it still kind of breaks my heart a little bit to see the contrast of his brother dancing a jig and shooting a cheesy grin at me the second my lens cap comes off, I know that that's just not him.  The prospect of forcing it feels wrong, and in the end, I don't want an awkward pose and forced smile out of him.

This weekend, though, I got what I hadn't been able to quite place my finger on.  I got what I had wanted to capture, without having quite the words for it.

This is him.  Pure, unadulterated him.  Face forward, full-on grin in all it's breathtaking glory, captured forever in twenty glorious megapixels on a camera that is proving to be one of the best purchases ever made for me.

You just don't get this kinda stuff on a smart phone.

Annnnd, SCENE

It is dinner time.

Little C: "Dad.  What do you love?"
Dad: "What?"
Little C: "What do you love?"
Dad: "What do I love?"
Little C: "No."
Dad, catching on to the script now: "Oh.  What do you love, [Little C]?"
Little C, promptly: "Peanut butter and banana." *

And that, ladies and gentleman, is how an autistic kid goes from non-verbal to manipulative in just two short years.

The end.


*Side note: Peanut butter and banana sandwiches are one of the only foods my kid will consistently eat.  He loves them like an addict loves crack, and they're pretty much all that sustains him on the nights when he is not refusing to eat a single crumb of whatever we've cooked.

Community

Wow.  I posted this over the weekend, and sent an email to Glennon over at Momastery to pass along our little story.  She posted it on her Facebook page today, and I quickly became overwhelmed at the flood of comments in response.

The internet is a scary place, sometimes.  With all of the communities I lurk in, over time I've learned to always stay out of the comments section, for the most part.  Nothing dents my faith in humanity faster than an open forum on...well, just about anything.  People are human, I know--they want to be right and they want to know better than the next guy.  Comment sections so often make me sad, thinking of all the people who feel the need to put others down solely due to their own insecurities.  Plus, I'm SUPER sensitive to criticism, so hearing mean things always makes me want to crawl in a hole and cry, even if those things are not about me.

As of now, 4,341 people have "liked" that post, and 88 people have shared it.  I've lost track of the comments, but every single one has been positive.  Mamas chimed in their own autism success stories--not in competition, but in solidarity.

Do you hear that?  they asked.  That's the sound of us cheering for [Little C].

THAT comment was the one that started the crying.

Such a small story, just a window into our daily lives, but who knows how many people saw it today--who knows how many got to see a happy side of autism when so often the crying, fretting and self-injurious behaviors are what make for more interesting news stories.

Earlier today, the company I worked for decided to run a little blurb about the 1 in 50 article publication on our intranet homepage.  The company I work for happens to be quite large, and I got several emails throughout the day, commenting on the article.

I usually never read these things, they said.  But I read this one, thank you so much for sharing.  

There were several iterations on this theme, and I couldn't help but wonder--will they remember this article when they, or someone they love, is affected by autism?  What if the words I've used have repercussions much farther than I ever thought they would when I wrote them?

A little intimidating, that.

I guess you never know what's going to reach someone, or how.

So I guess I'll just keep chattering, K?

Toast. I AM TOAST.

Y'all.  Remember that water park I told you I was going to photograph for our local special needs family support center?  Well, that was tonight, and I'm still reeling.  This is probably not even going to be coherent, but here we go.

I've been to walks, I've been to fundraisers, and I kinda thought I was a little inured to the special needs community by this point.  You know, settled in--like this was becoming old hat.  Comfortable, even.

No big deal.

Tonight, though, turned all of that on its head.  I showed up drained from a hot day spent in New Orleans, thinking I would just wander around with my camera, get some practice in, maybe catch up with some people, and hopefully get home in time to hit the sack a little early.

From the first, though, it was just different.  I've gotten a little hyper-sensitive to people's reactions to special needs kids, particularly my own.  I'm always looking for the puzzled frown, the rolling eyes, the impatience at the struggles with simple tasks so easy for everyone else.  There was NONE of that from the staff at this water park.

NONE.

The head honcho of the park chatted with me casually as I snapped away at the long (LONG) line of people waiting to get in.  He joked around with kids waiting impatiently.  He smiled at frazzled mamas.  He and the army of life guards who were on duty for this thing never batted an eye at anything or anyone there that night.  The facility didn't make a penny of profit from this, although they closed the park early to admit a group of almost 500 people--all individuals or family and friends of those with special needs.

There were specially designed water wheelchairs to allow those with physical handicaps to navigate through the water.

Aside from the amazing-ness of the staff, there were the families, guys.  Parents were able to relax and just let their kids play, without having to bristle at judgmental looks from other people, or worry about whether or not what their child was doing was socially acceptable.  Siblings were able to just have fun and not feel pressured to constantly run interference for their brothers and sisters.

I was struck again tonight by the feeling of privilege in belonging to this community.  I left humbled tonight, guys.  Neurotypical siblings giving their special needs brothers and sisters piggyback rides, helping them down slides, really ENJOYING their company in a non-judgmental environment--without a shred of discomfort or impatience.

I can't wait to go through these pictures.

Aspects of this special needs community can be HARD.

But good GOD, does the fire of it forge some amazing people.

Little Nugget

A little nugget this morning:

We've been working on Little C's motor skills, which are still a bit laggy here and there.  Dressing himself is one of the lags.

We are MAKING him dress himself every morning, and he is less than enthused about this new process.  He often whines, "I can't.  It is hard for me."

I have taken to responding, a la Momastery, "Yes, you can.  You can do hard things."

Then we work on it

This morning, we laid out his clothes for him, intending to work on them with him once we were done with our morning routine.

Baby boy dressed himself, then came to me and said solemnly, "Mom.  I can do hard things."

Yes you can, kid.  Yes you can.

Linear Thinking at its Best

Speech is a thing that is almost universally hard for those on the autism spectrum.  Some of those with autism  never speak, some speak in ways we would not expect, some start speaking in the expected time frame as children, only to find as they grow that speech is not the same as communication.  

Others, like little C, need to learn to speak--need to pick their way deliberately through the maze of communication skills that most children master at an early age, and with ease.

He's come a long way, this kid.  I sometimes forget just how far, and how much of an effort communication still is for him, in some ways.  It amazes me, really, when I get small glimpses into what his process is for communication.  It humbles me, too.  He's fought so hard to get where he is, and although he has every right to be grumpy and frustrated and angry sometimes, he almost never is.

Seriously, some days I'm in a bad mood and even I couldn't tell you why.

I got one of those glimpses into little C's head tonight.  When I came in the front door from a run, he was crying--brokenhearted--in the middle of the kitchen.

When I asked him what was wrong, he slowly, haltingly sputtered out, "I want them inside."

"Who do you want inside, baby?"

"They're outside."

"What's outside, baby?  What do you want?"

"They're outside and I want them inside," he wailed.

At this point, he was spun up.  It's heartbreaking, when he struggles like that.  Generally, we've learned to get past this point and help him articulate what he needs, but he still stalls when he's particularly upset.

Tonight, he was particularly upset, but I knew we had to hang in.  We didn't get this far by letting him skate.  So I tried again.

"[Little C].  Tell me what you need, baby."

Tears streaming down his face, he took a deep breath and hiccuped the words, building them painstakingly in his head as he went.

"Lightning McQueen...and Mater...are outside, and I want them inside."

After congratulating him for doing such a great job in letting me know what he needed, we walked through putting on his shoes and socks, I took his hand, and we went outside to retrieve his friends.  Sure enough, they rested peacefully underneath our slide in the back yard, waiting for him.

It turns out that at some point while I was out, he realized he wanted his toys, and remembered where he had left them.  In order to get them, he needed to go outside.  In order to go outside, he needed to put on his shoes and socks.

Shoes and socks are our latest battle here lately.  Motor skills have been lagging for a little while, but so often it is easier--and quicker--just to dress him than to work with him in dressing himself.

So, he's been a little spoiled, this kid.  This has resulted in a rather traumatic transition to having him dress himself every morning.  Shoes and socks have become sort of a mascot for this daily frustration he feels.

Once he realized he would need to put on his shoes and socks to retrieve his toys (and knew his daddy wasn't going to do it for him), he started melting down.

He pulled it out, though.  Although it's hard for me to realize how much of an effort this type of thing still is for him at times, I was so, so proud to watch him realize what the problem was, and then take the steps needed to get through it. 

Moments like this are the ones that get taken for granted by typical parents every day.  As hard as the hard times can be, I don't know that I would have known the depths of pride and gratitude that this kid has introduced me to, were it not for autism.

He's climbing mountains - slowly, methodically, but one damned mound of dirt and rock at a time.

Presto Change-O

So.  I am tired, y'all.  The good kind of tired, mind you, but damned tired.

I had my first official photo session yesterday, and I got paid for it.

Shocking, right?

I've come to the conclusion that I'm apparently incapable of going at anything at less than the speed of obsession.  Seriously, who knows if I'll end up being a whole lot of good at this photography thing, but damned if I'm not gonna know every nook and cranny of it eventually.  At least in theory--putting theory into practice is a different animal all together.

I put it out into Facebook land a few weeks ago that I needed guinea pigs.  You know, the hapless, furry and defenseless little creatures previously used for lab experiments before PETA got all huffy?

Yeah, those.  (DISCLAIMER: I LOVE GUINEA PIGS.  PLEASE DON'T THROW PAINT AT ME, PETA).

Anyway, it seems that people are perfectly willing to be hapless guinea pigs, if the price for being such is free.  I was flabbergasted, really.  Facebook comments and messages started coming in from people I barely remembered I knew, and I was all, "Are you sure?  I mean, I'm new at this.  And by 'I'm new' I mean 'Please don't get made at me if I screw up your pictures, K?'"

And then the people that said they wanted me to take pictures for them actually scheduled sessions with me.

I kinda thought they were bluffing, really.

So the first session was "booked" and as soon as I got over the giddiness of "booking" and me in the same sentence, I was all Joe Photographer.  Seriously, I went out there with my bag, and my light stand, and my off camera strobes...and then as soon as the guy showed up, I promptly forgot how to use all of the things.

All of them.  Except the point and shoot camera-thingee, so we actually ended up getting some pretty good photos.  Even if I did try to blind the poor guy with my reflector at one point.

Oh well, I'm sure his LinkedIn profile is very GQ, now.  Plus, there was last minute Mexican food afterward with a friend/stuff holder, so: WIN!

Then came the magical engagement session.  Well, "engagement session" is probably a bit glorified, since it was initially booked as a regular I'll-stand-still-and-let-you-take-my-picture session, but then the girl got engaged, so then it turned into a I'm-so-excited-about-my-new-ring session.

I planned, I Pinterest-ed, I packed a (little) lighter for this one...and forgot to check the weather.  So we ended up eventually arriving on location (which, incidentally, have I mentioned that I have no sense of direction?  Apparently this is important for finding the locations you would like to use for shoots), shortly before a monster lightning storm.  As in, I looked up at one point, and this chick's hair was standing literally straight on end.

At which point we decided that Hey, maybe we can take shots of the ring INDOORS!

Which we did.  And I got some hella nice macro shots out of it.

So if I were to tell you at the beginning of this week that I had one adult male who acts like he's been modeling all his life, one up-for-anything adult female with an exciting recent life event, and a family of five, including three kids under ten, one of which was a baby lined up...which of these would you have said were going to go down the proverbial drain?

Yeah, I had pretty much guessed the kids, too.

But wait, there's more!

This wasn't just any family, folks.  These were some of the most laid back parents ever, and the cutest and most cooperative kids--together in one absolutely beautiful location.

I'm almost kinda mad at them now, because really, they're setting me up for failure on my next session.  It's not at all reasonable to expect that kind of experience to ever happen again.

They were cute.  They mugged.  They stood still when I asked them to, Glory to God.

What the hell?  My own kids don't do that.  Ever.

(Okay, fine.  The cuteness and the mugging happen from time to time.  Mostly when other people are looking.)

Anyway--I had fun, the family had fun, I [mostly] remembered how to work my camera, and the dad insisted on paying me for what I had offered as a free, experience-building session, just based on what he saw on my camera's LCD screen.  And I've got at least one referral already lined up from them, and the dad wants my card to pass around.

I DON'T EVEN HAVE CARDS, Y'ALL.

What I do have now, however, is a logo.  A logo created with excruciatingly poor Photoshop skills, while brainstorming with a friend over Facebook, and in between editing photos in Lightroom.

BAM. 

It looks like I'm totally good at this, right?

I sure hope so, at least, because in the next two weeks, I've got one [thankfully small and informal] wedding to second-shoot, one special-needs water-park/luau event (How the hell does one shoot a water-themed luau? Anyone?), and a horse-therapy center that is supposed to call or email at any time regarding some pro-bono promotional shots.

See?  Full throttle, that's me.

The eventual goal is to get proficient enough to actually do this, and do it well--making my services (such as they may ever be) available to special needs families and organizations as much as possible.  Every time I am able to take a photo of Little C in which he makes good eye contact, or engages the camera with a smile, I am ever so grateful that I have picked up this camera.  Until I did, I hadn't gotten a frame-able shot since before we took him into a studio when he was around eighteen months old.  I can still remember the paint-peeling screams coming out of him at the pop of the strobes, the panic at the attention of the camera-man.  I remember tiny toddler hands clenched so hard to his ears that they were bright red when I tried to pull them away.

The thought of overwhelmed kids in crowded studios, and sad parents with empty picture frames depresses me.  More than that, though, it motivates me.

So.  Bayou Rose Photography for the win, K?

--

PS- I am Cydley99 on Flickr.  Also, the new Flickr is awesome.  Follow me?  Please?

PPS- I will [hopefully soon] have a Facebook business page.  As soon as Facebook stops being an @sshole, anyway, because apparently they think I'm doing something shady and won't let me create a page right now.

STOP BEING AN @SSHOLE, FACEBOOK.

Anyway, follow me at Bayou Rose Photography, eventually?  Please?

PPPS - Given all of the social media mentions in these post scripts, I feel obligated to inform you that I am Cydley on Instagram, although I should probably also warn you that I am extremely boring.  And, I'm not sure that I understand filters.  Or hash tags. Or Instagram.

There.  I'm done.

Watershed

From the very beginning, haircuts have been a nightmare for us. It's not uncommon, really, among kids on the spectrum, but knowing all these years that we weren't alone hasn't made it any easier.

 

His first haircut was supposed to be such a special memory. We strolled into the cutesy kids salon, strapped him into the colorfully painted airplane chair, and ensured our camera was at the ready.

 

Things went downhill quickly from there, as you can probably imagine. I wouldn't understand then what the clutching at the ears meant, that the shrieking was just a tad out of proportion to be just typical fear of a new experience. Just a year later, though, I WOULD understand... And would feel horrible for subjecting him time after time to the noisy, meltdown-inducing clippers on these visits with the expectation that he would one day just "get over it."

 

It's silly, really, that I would later pick THAT thing to agonize over, but it seemed at the time to be the embodiment of the moment when I SHOULD HAVE KNOWN.

 

His hands were GLUED to his ears, his body FRANTIC to squirm away.

How could I NOT know that it was so hard for him? How could I not understand that it was TOO HARD?

 

I'm sorry, baby, I wanted to tell him. I just didn't know.

 

Post-diagnosis, we would try again, armed with positive reinforcement and therapists on speed-dial--with no success. Over time, and with the help of very patient salon workers, he stopped crying the moment we turned into the parking lot, and became willing to sit still and allow hand-cuts. Every visit, we'd bring out the clippers, though, to push just a little. To try for a little tidy-up in the back, a little desensitization, whatever we could get, but NOPE.

 

Baby boy was NOT HAVING IT.

 

As a family, we pushed for other things, FOUGHT for other things, but a haircut just didn’t feel like a mountain we were willing to die on.  I decided I was completely fine with him looking like a disheveled urchin for the rest of his natural life if it meant that I could make at least one thing a little bit easier for him.

 

So, hand-cuts it was.

 

As usual, though, baby boy had his own schedule for these things. Not ours, but HIS, and when he was ready, he was ready.

 

We casually suggested that maybe he was ready for the "big boy" clipper haircut this time--not really expecting much, honestly. His reaction to this, though, was surprisingly open. We settled on keeping expectations low, encouraging him to try to be "big and brave," for this adventure, and figured, hell... Couldn't hurt to try, right?

 

I allowed myself to hope, then. Over the years of therapy, we've more or less learned the rhythm of how his mind works. I knew that if we could get just ONE success, one shining moment when he did something that turned out to be less scary than expected, and he could be made to feel PROUD of himself, we'd be GOLDEN.

 

Just one, I prayed. We just need ONE perfect storm.

 

And hot DAMN if this kid didn't deliver.

 

We pumped him up at every opportunity throughout the day.

 

Big and brave, we chanted. Big and brave.

 

The time came, and I'm not gonna say his eyes didn't widen, his hands didn't creep toward his ears.

 

They did.

 

But one swipe with those clippers, a hunched shoulder...and the light dawned.

 

Not a day at the park, these clippers, but NOT THAT BAD.

 

He DID it. A milestone that we've had to wait a while longer for than most, but baby boy DID IT. We cheered, we clapped, and God knows that I will never forget how PROUD of himself he was after that haircut.

 

I couldn’t be prouder, myself.

 

So screw your typical curly-locked, airplane-riding "first haircut."

 

I'll take this one for the win.