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.

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.

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?

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?

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.