Wednesday, October 16, 2013

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.” 

Wednesday, September 25, 2013

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?

Thursday, September 12, 2013

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.


Monday, September 2, 2013

Oh. Hi.

Hi again.  Cyd here, from the other side of insanity.  You'll be happy to know that yes, I did pass my test, and yes, I am still in one piece.  Relatively speaking, at least.  I now have just four more panic-inducing exams to take, and then I will happily refuse to ever take a standardized test again.

Did I mention that at the end of this rainbow is a commencement ceremony in Hawaii?  'Cause there is.  Also, lens spending money for said Hawaii trip.  Also, nights during which I will not wake up categorizing the legal ramifications of various bailee/bailor relationships (Don't understand what those words mean? ENJOY THAT FEELING FOR ME).

I have decided that upon completion of the last necessary test in this insanity, I will be purchasing a ukulele and a grass skirt to adorn my desk at the office, and tormenting absolutely everyone within ear and eye shot.  It may be the only thing keeping me going.

Just kidding...LENS MONEY!

Speaking of lenses, I sort of stumbled into a wonderful working relationship with another local photographer.  I second-shot for her on a wedding at a local (gorgeous) plantation, and the whole experience was absolutely amazing.  The photographer was laid back and happy to teach me her ways, and the wedding....dear Lord, the wedding.  There was an amphitheater, a chandelier, honor guards with crossed swords, and a dog as bridesmaid.  Every moment I wasn't actually taking a photo was spent looking around in dazed amazement, wondering how I got so lucky.  The lead photographer said she would love to have me back for the other weddings she has lined up, and I'm hoping to God that she was serious.  She uttered these words before she saw my photos, so I'm still a little anxious [read: terribly insecure].  If it works out, it'll be the perfect opportunity for me, so keep your fingers crossed.

On the autism home front, Little C is starting to venture into foods outside of his norm, which has been encouraging.  Predictably, this process is in no way proceeding along a reasonable path, but that in itself is becoming the norm, really.  Boiled peanuts? SURE, I'll take some of those.  Previously-looked-upon-with-horror cheese dip?  WHY NOT?

Chicken *strips*, rather than chicken *nuggets*?  Have you lost your mind, woman?

So maybe we'll ease into the chicken strips thing, I'm thinking.

Two more photo sessions this week (eek!), then it's prepping for exam #5, and a solo wedding in October.

Y'all pray for me.

Monday, August 12, 2013

I haven't forgotten about you

Okay, fine. Maybe I did forget about you.  A little.  For short periods of time.

But seriously, I have good reasons... Mostly.

My photography business has started taking off.  I have subsequently become terrified that I will fail miserably at this, but that's just how I roll.

Because I'm a sadist (and also in *need* of more lenses), I have embarked upon cramming for another Big Scary Test--which will, when all is said and done, reward me handsomely.

Assuming my nerves survive the journey.

So, between running here there and everywhere with my camera, editing photos and cursing my computer when they do not upload to my website correctly, and teetering on the brink of hysteria thanks to The Great Test Countdown, blogging has slipped my mind here and there.

In apology, I give you The Four Stages of Studying, a la Cyd:

Step 1: Read through material, first round.

Reaction: I got this.  I GOT this.  In fact, I've GOT this SO HARD that I'm going to commit myself to a billion other things in addition to this.  Because I am SO going to ace this.  Give me a week, maybe two, tops.  Easy peasy, baby.


Step 2: Read through material again, followed by perusal of study guide and flash cards.

Reaction: Hmm.  This may be more challenging than I anticipated.  Maybe I didn't understand the whole [insert deceptively easy-sounding material here] thingee as well as I thought I did.  Oh well, I've got plenty of time.  It's not THAT hard.


Step 3: Third pass of material, followed by practice exams.  Which I flunk.  Miserably.

Reaction: Omigod.  I'm going to fail.  I'm going to fail SPECTACULARLY.  I don't understand any of this.  It's all backwards.  WHAT DO THESE WORDS EVEN MEAN? I've only got X days left, and the clock is ticking SO LOUDLY.  And I have children wandering around, expecting to be FED and BATHED and HOW AM I GOING TO DO THIS?  I must spend EVERY WAKING MOMENT having panic attacks over this in a completely unfounded hope that freaking out will somehow make everything easier.

BRB, gonna go study obsessively.


Step 4: The Give Up Phase

Reaction: #$%^# it.  Just !@#&^ it.  I've been over and over and OVER this material, and there's no room in my brain for anything else.  Either I know it, or I don't.  No amount of further obsession is going to change the outcome of this whole debacle, so let's just get it over with so that my kids can stop looking at me like I'm a lunatic, already.


I'm currently in stage 3, with stage 4 rapidly approaching.

It's a wonder I've made it this far in my life sans-medication, really.


Tuesday, July 23, 2013

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?







Saturday, July 13, 2013

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?




Wednesday, July 3, 2013

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.




Saturday, June 29, 2013

Conversations with my husband

I sorta have the most amazing husband ever.  I know, I know.  You've heard that line before.  

For real, though.

Not only is he a dad that puts my own meager parenting skills to shame, he spoils me to an embarrassing degree.

Even while the house is pretty much carpeted with children's toys, the last action my oven saw was frozen pizza, and I've declared the "The-Kids-Went-Swimming-Today-So-That-Means-They-Don't-Really-Need-Baths" argument totally valid.

Lord knows why the man not only puts up with me, but by all appearances seems to love doing so--I'm not arguing, though.

He's not only been humoring my new-found hobby/business venture, but he's been very encouraging in it.

Hence, the following conversation:

Him, presenting me with the means and permission to obtain a gizmo I would likely never have gotten myself:

"Just get it.  It makes you happy, so get it.  Here."

Me: "Really?  You're sure?  I mean, really?"

Him: "Yep.  Really."

Me:..."Can we just pretend that I was all altruistic, and turned you down in a graceful display of self-sacrifice, and then you insisted, and I demurred, and then you insisted again until I gave in and finally agreed?  Because that's what's happening in my head right now--but we both know how this is going to end, right?"

Him: "Yep."

Me: "I love you."

THE END

Friday, June 28, 2013

Updates Galore

The past few weeks have seen me turn into a crazy woman, trying to get this photography thing off of the ground.  Shockingly, it's going pretty well.  You can now find me on Facebook, and on my website.

I know, right?

There's still a lot of work to be done all around, but I must say that I've kinda surprised myself with this one. I really enjoy doing this, and other people seem to find my services appealing...at least so far.

I'm not killing myself over it at this point--no plans to quit my illustrious day-job, or anything.  If the market turns out to be too saturated in my area, or my particular skills just not enough in demand, I'm okay with not getting big paydays out of this.  It's rewarding enough on a personal level that I just love doing it, and that's enough for me.

I hope this is okay to share, but this is a photo that sort of encapsulates what this whole thing has been meaning to me.  The special needs event I photographed a few weeks back affected me in a lot of ways, but I just keep remembering this kid.

Let's call him A, hmmm?

His mom is an incredible woman, who does a lot of great things for a lot of people.  Photography is his passion, and he spent the greater part of this event wheeling after people with his camera, snapping away.  He and his mom are one facet of disability--unique, like all of the others, and one that many may not get the chance to see.  

I only spent a short amount of time with A, but it was enough to convince me that he was not the type to feel sorry for himself, or let anything stop him from doing the things he wanted to do. I love, LOVE that attitude--the Move-Or-Get-Run-Over outlook.  

He had things to do, places to go.  Who cares about a little old wheelchair?

I'm enjoying portraits, and kids, and bridals, and landscapes--but people like A are what really fascinate me.  I wish more people would have the outlook on life that this kid did in the scant thirty minutes I spent with him.  I want to take photos that make people see the camera and the passion first for people like A--and see the wheelchair as just an accessory.


Wednesday, June 12, 2013

Weddings are HARD, y'all

Whew.  My first wedding as a photographer is DONE.  Well, sort of.  There's another round of editing to be done before the final photo delivery, but I have now shot bridal photos, couples photos, macro shots, "getting ready" shots, ceremony shots and reception shots.  ALL IN THE SAME DAY.  Then, I went home and edited for what seemed like an ETERNITY.

I got some REALLY great stuff, and I was so excited to do this.  It went as well as could possibly be expected--the "first" shooter and I worked well together, the couple was super fun, and the bride had not one bride-zilla moment.

But y'all, I am TIRED.  Even though this wedding was on the small side, it turns out you still have to take the same shots of the main events that you would at a larger wedding, just while covering (slightly) less ground.

I know, right?

I even got paid, even though the money has already been spent on (more) equipment.  It's so much fun doing something so personally fulfilling, and I can't WAIT for the bride to see the photos!

Now, time for a little break.  I'm about one Photoshop layer away from going cross-eyed.



Monday, June 10, 2013

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.

Monday, June 3, 2013

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?

Saturday, June 1, 2013

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.

Friday, May 31, 2013

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.






Tuesday, May 28, 2013

A Few Updates

Strap in, folks.  This is gonna be a little schizophrenic (I know.  Contain your shock, K?)

1) The "1 in 50" Parenting project has been sidelined, perhaps permanently.  I got a letter from the editor last week, announcing that the company had been bought out by a rival, and the magazine would be discontinuing publication after their July issue.  Aside from my initial disappointment at my article going *poof*, I really was pretty saddened by all of this.  This was a great company, with editors who had been kind and encouraging during my interactions with them, and with employees that had apparently all been given very little notice before being let go.  Yet another casualty of the digital age, I supposed, but a sad one.

2) Facebook is an even bigger @sshole than I thought.  Not only will it still not allow me to create a business page, it's locked down my personal account because it's pissed at me for trying too many times to create a business page.  I now have limited Facebook access for the next 30-days.

3) I refused to accept did not realize how addicted I was to Facebook until said lock-down.  It has not been a pleasant 24-hours.

4) Google+, however: Not an @sshole.  I was able to create a business page there with almost zero effort.

5) I kinda <3 Google+.  It's much easier to navigate and interact with, and the photos are gorgeous compared to Facebook's compression-riddled mess.  It is, however, still kind of a ghost town.  But, my page gets prioritized search results, so there's that.

6) 48 hours of working on logos and watermarks makes me realize that graphic arts designers earn every penny that they make.

7) I need a website.  No, strike that, I need someone to make a website for me.  I've just dipped a toe in this overwhelming pool thus far, but I am already feeling extremely ill-prepared for this.  I haven't touched HTML since the days of Geocities.

GEOCITIES, folks.

8) Bubbly, effusive, grateful moms of kids you've photographed are the best.  I recommend that everyone get one, really.  Huge morale booster.

9) I've discovered the "scheduled post" option in Blogger.  Something happened with Little C tonight that I want to blog about, but I don't want to include it in this schizophrenic mess, so I'm going to employ this new button I've discovered.  This means you'll get another post from me this week, in a much more coherent format.   So, um, yay?

  Schizophrenic me, signing off.

Monday, May 27, 2013

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.



Thursday, May 9, 2013

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.
 
 

Sunday, May 5, 2013

Sibs

I've thought for a while now that we may have a major problem on our hands with food sensitivity in this household.  Never a phenomenal eater, the list of foods little C will eat has gradually become more and more restricted.  We've tried the if-you-don't-eat-what-we're-having-you-don't-eat-at-all thing, we've tried bribery, we've tried positive reinforcement--you name it.  All failures.  Method and consistency have worked in pretty much every area save this one.

Mainly, his issue seems to lie with meat.  Specifically, any meat other than chicken nuggets.  Nuggets, mind you.  Not tenders.  Not fillets.  Nuggets.

There is some flexibility with other foods--carbs, predictably, are generally winners (with the exception of pasta, which he seems to have a particular horrific aversion to).  Red sauces are blacklisted, but ketchup, somehow, is the nectar of the gods.

Meat, though, is completely locked down.  As in, this-is-the-mountain-I-am-willing-to-die-on locked down.

I was in the running for parent of the year last week when I decided it was taste-the-meat-or-go-to-bed-early night.  He *genuinely* gagged on the minuscule piece of ground meat that made it onto his tongue, though, so we settled for swallowing a spoonful of sauce that accompanied said meat.

Winning, right?

We'd pretty much given up on this food group, honestly.  He'll put it on his tongue because he knows the routine by now, but no matter how savory the selection, he always either A) gags, or B) spits it out with a moue of distaste and mentally adds it to his list-of-things-I-will-panic-at-the-sight-of-later.

Tonight, though, I all but gave myself whiplash walking through the living room, as this extremely picky kid strolls past me with a half-eaten stick of beef-jerky in his hand.  And breath that smelled like teriyaki, y'all.

Me, incredulous: "[Little C], where did you get that?"

Little C, calmly: "[Big C]."


SIBLINGS FOR PRESIDENT, FOLKS.

Sunday, April 28, 2013

Whirlwind

The past few weeks have been some of the most personally fulfilling ones I can remember in my short (shut up, 29 years is TOTALLY SHORT) life.  I'm becoming increasingly engrossed in photography, and finally seem to be getting past the frustrations of figuring out settings and ratios and calculating hyperfocal distance (except I still don't really know what that means), and am able to really enjoy it.

Every time I post a new album on Facebook, I can almost hear the collective click of friends muting me.  It's quite likely I'm driving them all insane.

So, I was coasting along in my little learn-as-you-go groove, taking a class here, reading a new article there, when I got an email from Parenting magazine, regarding my essay.

So hey, it's possible you'll be featured in our magazine.  And it's possible we'll need a bunch of high resolutions photos to choose from of you and your family.  By Friday.

So, as per my usual modus operandi, I promptly commenced Freak Out Mode.

Both my writings and my photos are likely going to be published.  As in, out there for the whole world to see, in bright glossy color.  I've spent the ensuing day-and-a-half fretting, wondering how our story will resonate.  It's important--so important--that I get this right, although I guess for the most part it's out of my hands now, the writing already done.  When I first wrote what I did, I really thought only a handful of people would see it.  My only thought was that maybe it would strike a chord with someone, be it editor or janitor...or random Twitter follower.  Our autism is so unique, I felt the need to put our perspective out there into the ether, in hopes that someone would read what I had to say and think, "Hey, that sounds familiar."

The irony of anything I have to say making it into Parenting magazine is striking me, now.  As tied-up-in-a-neat-little-bow as I'm sure that essay came across, the truth is that we still have struggles.  Different struggles than before, perhaps a little bit fewer from month to month than we did, but we still have them.

Just this weekend, Big C spent a solo night at his grandmother's, and we were dreading the impact of the change in routine this would have on Little C.  He does everything with his brother these days, and we were sure that the night would go down in flames once he realized his brother wasn't gone for a quick outing.  Surprisingly, though, it went really, really well.

Until it didn't.

While it could have gone worse, the night did end with a crying, fretful, discombobulated little boy, searching for the words to articulate what was wrong.  I'm not entirely sure he completely grasped it himself, and that uncertainty was hard.

But it was a different struggle than those in the past, and baby boy is back to his sunny little self this morning.

It feels like success, so I'll take it.

I'll post again once I know any more particulars, but in the mean time I'll be frantically trying to cobble together photos.

Wish me luck.




Sunday, April 14, 2013

This is how we do it

Today was an autism-packed day, friends.  Our annual 5K for autism started obscenely early this morning, and I put in the 3.2 miles, followed by another 1 walked, as I have for three years now.  While wonderful, these events are always a little sad at the same time, too.  Old friends are greeted once again, with apologies made for life having gotten in the way of get-togethers over the last year.  New friends are made, and I am glad to fill the roll of One with Experience--glad I can be that someone for another parent, as one was once for me.

Putting in the miles provides a time for reflection, as this run is something I often think of as my ground zero--it was here that I first really came to grips with my child's autism, three years ago.  It was here that I identified myself, with hand raised shakily in the air, as a special needs parent for the first time.  So much has changed since then--we are in no way in the same place now as we were--but I always remember that trembling, reluctant hand, and take a moment to appreciate what mind-blowing ground we have covered since then.

Tonight, my mom and I attended the opening of an art gallery little C was featured in.  The photographer whose work was on display gave a wonderful talk before the opening, describing the bond he formed with his autistic son through the shared creation of those images.  His words resonated with me, in a way I hadn't really expected.  I'm not usually the art-gallery-going type, really, so I expected to show, take few pictures of however Little C featured, and leave.  Instead I found myself wondering what that thing would be for us.  I want that bond--viscerally--that cooperation on a common goal, sans the step-by-step instructions for new things that he still needs at this stage in the game.  Maybe it's age, maybe it's that creative thinking just hasn't arrived yet, but I think, as I often do, that I can't wait to really share something with him.

Parenting an autistic child has taught me no greater lesson thus far than the value--and payoff--of patience, though.

It'll come.

I was able to talk to the photographer a bit after the gallery opening, and it was an interesting experience.  Somehow, he had found my blog, and in meeting me, exclaimed, "You're that writer!" (Or maybe it was, "You're that writer...?" Whatever.)  He asked, motioning to Little C's photograph, "So where are you going with that?  Are you writing a book?"

Recovering from the shock of someone actually referring to me as a writer, I fumbled for a response.  "I don't really know," I managed.  "I'm just experimenting right now."

We talked for a while after that, though, and I found myself reflecting on where I was going with any of this.  An experiment in personal expression, maybe?  Using this--all of this--as a way of exploring the intricacies of my children's minds?  Stretches of time go by that I almost forget Little C has autism.  A combination of how well he's doing in school, an ever-increasing grasp of language, whatever it is--sometimes we're so wrapped up in our daily chaos that I just forget, as silly as that sounds.  Then I'll trip over a train after the kids are finally--blissfully--asleep for the night, and I'll look down to find a nice neat line of Thomas characters, all positioned just so, as if to say, "Yep.  This is autism, and I'm still here."

It's in that moment that I'll take out the camera, and try to capture that.  I have dozens of photos like this--little moments of remembrance that I'm sure will only ever resonate with me.  As I snap, I wonder what it is that makes this ritual so fulfilling for him.  He doesn't need his trains to remain in place, as some kids do.  They're like his own little message in a bottle sometimes, saying, "I was here.  This is me.  Maybe it's not everyone's idea of normal, but this is still me."  As long a way as he's come, and as varied as his other interests are now, too, I want him to always understand that I value all of his interests, whatever form they may take.












Saturday, April 6, 2013

Let's back to the lighthearted, shall we?

I'm not sure if anyone was aware of this, but APPARENTLY my children and I are rock stars.

Big news in our household over the last few days - first a local organization selected Little C's photo to feature at an apparently-big-name photographer's opening art gallery.  He's opening an exhibit entitled "Echolalia" here and--barring the obvious confusion involved with a photo gallery about a verbal stim--it looks so cool.  The criteria for submission was that the photo had to express the way your autistic child looked at the world.  Apparently, this qualified.

Super interested in Lightning? Or preparing for high tea?

For all I know, this photo "feature" will involve thumb tacks and a bulletin board, but I am so pumped.

THEN, I get an email this morning which I sort of almost deleted because I sort of almost assumed it was spam, telling me that MY ESSAY MADE THE FIRST CUT ON PARENTING.COM'S I AM 1 IN 50 CONTEST.  

Aside from the panic induced by realizing that something I wrote is now posted on a website that an untold number of people see each day, I am completely humiliated that the "family photo" that I submitted was essentially a photo-bomb.  I was CERTAIN that this essay was going to go exactly nowhere, so I set up my camera on a tripod, hit the self timer, and jumped into the picture with my kids at the last second.  So yes, if you're surfing to that link, I am the one midway down the page, looking photo-bomb-fabulous among all of the nice, pretty professional photos.

Holy cow, people.  How in the world did THIS happen??

*UPDATE**

MY PHOTO-BOMB-FABULOUSNESS IS THE TITLE PHOTO FOR A HUFFINGTON POST ARTICLE.  The worst selfie in the history of selfies is now (or was, briefly--whatever) a front page feature. 

Also?  I AM NOW A PIN.  Somebody pinned me.

Does this mean I've made it?






Thursday, April 4, 2013

My Brother's Keeper

It is late - thirty minutes past bedtime, and prime stall-tactic time.  Big C shuffles into the kitchen, where I am mopping, rushing my house-cleaning routine in preparation for company tomorrow.

When I hear his footsteps, my first reaction is exasperation, God forgive me.  I love him, but he is five years old, and sometimes I feel as if I will scream if I hear one more "What's that?" or "How do you spell...?"  His mind never stops, this one, and in consequence, seldom do I.

I ready my best stern "Go to bed, son," admonition, but hesitate.  There is something in the rhythm of his breath, the stillness of his body as he makes his way to me.  I bite my tongue, and am glad of it when he warbles brokenly, "I don't want you to die."

In the heartbeat it takes to swing him up into my arms, he is crying, and my heart is breaking.  I don't know what exactly is going on in his head, or what prompted this tearful declaration--not yet--but the tenseness in his body and my mother's instinct tells me that my baby is genuinely distraught.  I just cling to him and let his tears run their course.

"When you're one hundred," he hiccups, finally, "are you going to die?"

I want to tell him no, so desperate am I to comfort my baby.  I can't, though.  Lies do neither of us any favors, ultimately.

"We all die, baby," I answer.  "Nobody lives forever, but Mommy and Daddy aren't going to die for a long, long time.  You'll be an wrinkly, cranky old man by the time we are ready to go."

I am trying to cheer him, surprise a smile onto that tiny, precious face--but he is having none of it.  I fumble my way through an explanation of the hereafter, how bodies just get tired and worn out, and one day God decides He wants people in Heaven with Him, and they get to go home.

Positive by this point that I am scarring my poor child for life, I am unprepared when he drops the bomb on me.

"When everybody dies one day, who's going to take care of [Little C]?"

His shaky five-year-old voice asking such an adult question hits me like a ton of bricks.  My mind races, trying to make sense of this.  Where did this train of thought come from?  Does he mean what I think he means?

Then I realize: Of course he does.  We'd hoped that Big C was too young to think too deeply about his brother's differences, we'd hoped that given their closeness in age, Little C's quirks would seem normal, since Big C had known nothing else.  We'd hoped to shelter our baby from the uncertainties in his brother's future for at least as long as it took us, his parents, to find a way to articulate them.

But here it was.  Maybe my baby didn't understand that it was autism that made his brother a little different--even though we've broached the topic before--but he knew something did.  All of the circular conversations, patient explanations of what was going to happen and when, the hard work on self-care skills...none of that had gone over this child's head.  In his frank, five-year old way, he voiced the very thing that lurks in the back of my mind, always: Who will be there for him?

I knew, just then, that this was one of those moments for Big C.  He would forever remember what came next--I could feel the strain in his body and read the earnestness in his eyes that told me this is important.

Carefully--oh so carefully--I picked my way across this uneven ground.  I explained that when people grew up, they learned to take care of themselves, and each other.  Taking care of each other was JUST as important as taking yourself, I told him.  He and Little C would grow up, and learn to take care of themselves, but they would always take care of each other, too.  I tried to couch it in terms that he would understand (remember when Mommy was sick that one time, and Daddy had to bring her medicine, and food, and he took good care of Mommy until she was better?).  Husbands and wives, siblings--even people who weren't family at all--we all take care of each other, I told him, because we love each other.  Even when Mommy and Daddy were gone, neither one of them would be alone. They would have each other--maybe even wives and kids of their own, too.

I don't know that I did a wonderful job of reassuring him.  I hope I did a halfway decent job, at least-- and he did finally crawl into bed in a bit less of a worried state than when he'd gotten out of it.  What I pray that I did tonight was to impress upon him the knowledge that his brother will always need him in a way that no one else will--just as he will need little C in a similarly unique way.  Brothers need each other all over the world, in one way or another.  Maybe their bond will be a little different than the next guy's, but so be it.

Who's to say it won't be better?

Tuesday, April 2, 2013

Today's the Day

This is our third go-around on this Autism Awareness Day ride.  Every year I experience so many mixed emotions on this day.  I spend most of it reading blog posts by other parents, other individuals with autism, and wrap myself up in their words--I love how this community is a never-ending evolution.  As there is no one autism, so too there is no one perspective on it.  There is always a new outlook to contemplate, a new voice to be heard. As cringe-worthy as speeches proclaiming intent to "eradicate" autism and mourning the "loss" of our children to this "disease" are, they speak a viewpoint that is it ours to influence.  I am a part of that club now.  On my first Autism Awareness Day, I wished fervently to not be a part of that elite group of people.  Now, two years later, I am proud to count myself amongst them.  Members who write posts such as this one and this one - oh, sweet Lord, this one--they remind me that for every puffed up politician or research scientist that only sees the worst of autism, we--the ones on the front lines--we get to see the best.

It is our right to show those around us that for every epic meltdown, there is also a marathon cuddle session with a sibling, catching up on a favorite television show.  For every panicked reaction to an unexpected noise, there is also the soft, hard-won "I love you" at the end of the day that made every screech worth-while.  I never would have appreciated all of the things that most people take for granted in their children, were it not for autism.  Two years later, I treasure that "I love you" above anything else, and I feel sorry for parents who don't have that.

There is a lot of talk about responsibility to educate and fighting for rights today.  Braver people than I skirmish on that front year 'round, and my hat is off to them.  One day, after enough Autism Awareness Days have passed, I have faith that we'll be "there"--in that place where those with autism can (easily and affordably) receive help for their challenges, yet still be respected for their individualities.  Where voices of autistics are heard at the same volume as those we now label "typical"--and their oftentimes incredible strengths are celebrated.

Today, though, for me...I'm just grateful that I get to be this autistic child's mom.




Monday, March 18, 2013

Thresholds

I kissed my baby boy good it tonight for the last time as a 3-year old. My eyes pricked as my hand hovered over the light switch in his room, and I found myself hesitating--reluctant to flip the switch and end the nightly ritual.

I felt as if I were closing the door to his baby-hood, as silly as that seems. Other kids his age have seemed so OLD to me, for so long now. Maybe it was the lingering speech delay, the frustrated play skills, the periodic struggles that would rear their ugly heads that kept him a baby for me. Whatever it was, it was SHOCKING to see my little boy settling cheerfully into bed tonight. He was excited about his birthday dawning, and was eager for sleep.

EXCITED. My baby boy was EXCITED for his birthday--a future event, one that he has grasped fully for the first time, only this year. For the first time, he has dictated how HE wants his day to go, from the blue Thomas the Train cake with his name on it, to the presents he wants--and, thanks to parents and grandparents still desperately grateful for speech, will certainly receive. As I made his cake tonight, he even licked the spoon and reminded his brother that HE got to lick the spoon because it was HIS birthday.

Smugness is new, and (apparently) fun.

I feel as if I am constantly staring at this kid, stunned that he is so quickly evolving into a tiny, complete HUMAN BEING--becoming so much more complex and independent, moment by moment. Gone are the days of me dictating every moment of his day, first because he was too young to express his opinions, then--later--because he COULD not do so.

When did this happen? I wonder. When did picking out his clothes every morning become "I WANT TO WEAR MY GAP SHIRT!"? When did me planning birthday parties based on color schemes become, "I WILL HAVE THOMAS HAT AND THOMAS PLATE AND THOMAS CUP, MOM."?

I'm not ready for him to stop being a baby, but I have to be. Because I'm so, so proud of the kid he's become.

My hand hovers just a moment more, saying a sad goodbye to diapers and Super Why and the complete DEPENDENCE my sweet boy had on me for so long.

And I take just a moment to be proud that my voice does not wobble with my "Goodnight, baby," as I turn out the light.