Saturday, February 23, 2013

This Is

I did something scary tonight.

I submitted an essay. is hosting an essay contest entitled, "This Is What Autism Looks Like."  It's an effort to make the voices of parents and autists alike heard, instead of letting their stories be told through statistics (and 25-year old movies starring Dustin Hoffman).  It's a noble effort, and exactly what I want the media to be looking for: less alarmism, more understanding.  Less discussion of "causes" and more celebration of differences.

So, I had to submit.  It's scary for me, because I've never really submitted anything before.  I've daydreamed and vented and whined here in my safe little haven, but have never really had the guts to put myself out there--beyond my little circle of family and friends and Twitter followers, who are unfailingly nice to me.

I had to, this time.

So, for the parent whose child has just been diagnosed and is desperate for a "cure," for the friend, neighbor or family member who feels they are always on the outside looking in, or simply for the curious: this is our autism.


So many people think they know what autism looks like.  The word conjures images of all of the stereotypical symptoms and challenges - the rocking, the humming, the meltdowns.  The words that never come, or - worse - arrive, only to vanish in the wind.

Our autism was at first more about what wasn't, rather than what was.  There was no rocking, no humming, no head-banging.  But neither were there words - any words.  No "Mommy," no "Daddy," no baby talk or babbling.  There were no typical play skills, no following directions, or even responding to the call of a name.

But then, as we began therapy, the "was"es inched out of their hiding places, one by one.  First, there was good eye contact.  Then, halting and timid, came speech.  There was the joy of hearing "Mommy" for the first time at more than two years old, and the heartbreaking gratitude at the words, "I love you" by nearly three.  There was shock and celebration at the first sign of pretend play - the words "I'm a pirate!" were never more precious, nor did two parents ever make more fools of themselves at the sound.

No one knows hard like an autism parent, but no one knows joy and pride in quite the same way, either.

In the time since we received our son's autism diagnosis, we've learned that the things that ARE matter so much more than the things that are NOT.  Our autism has revealed to us the strength in family, the support of community, the value of patience, and the payoff of hard work.

Our autism is different today than it was last year, and even more different than the year before.  Two years post-diagnosis, our baby boy defies expectations, has a mind like a steel trap, and slays the hearts of family, therapists, and preschool teachers alike.

This is love.  This is our autism.

Friday, February 22, 2013

There's a post brewing

I'm gonna post something real soon, promise.  I have a bunch of cool (does anyone say "cool" anymore?) photos that I took on an outing last weekend that I want to bore you with share with you.  AND, my children have been doing lots of interesting things lately.  LOTS.  I plan on enumerating on the things they've been doing in enough detail that it will thoroughly humiliate them as adults one day.

WHAT?  I'm a parent.  IT'S WHAT I DO.

But it's not bedtime yet, and I only have approximately three minutes before someone starts screaming about something inconsequential, so I'm just going to post this photo (pic? shot? I'm still mulling that one.  Photography lingo is very confusing).

I caught sight of this guy while I was out for a run, and just knew he was going to be gone by the time I looped back around and was (conceivably) able to grab my camera in time to get a shot of him.  He stayed put, though, so I snapped away for a good twenty minutes, long after it was too dark to get anything halfway decent.

It was only after I got home that I realized that he did not move the entire time I was out there.

To my neighbors: If he's fake, nobody tell me, K?

Saturday, February 16, 2013

Bah Humbug. Or whatever phrase is appropriate for "I hate birthday parties."

So, my initial photography lesson got rained out, then rescheduled for tomorrow, and may now be rescheduled again, but we're not going to talk about that right now.  Tomorrow, I will (hopefully) have some decent shots to post one way or another, but for now I want to talk about how much I hate birthday parties.

I know, I sound like the worst person on the planet, right?  Might as well kick a puppy and be done with it.

We attended a party today thrown by people we love and who do everything possible to make us and our kids feel comfortable, but it was, a less-than-uplifting experience.

I was tasked with getting social skills video for an upcoming therapy checkup, and there's just something depressing about watching your kid through a viewfinder NOT doing the things all of the other kids are doing.  He's come a long way, that kid, but sometimes I forget that there are still skills we need to work on.  He's doing much better even since last year's party at the same venue, but it still broke my heart a little to be watching him through that viewfinder, silently coaching him to talk to this kid, or that kid, or put the Cars 2 toy down, already, and GO PLAY.

It kills me a little to see him approach an adult (yay!), only to say something they don't understand, and have them then turn that puzzled look on me (boo!).  Then I have to go through the should-I-explain-or-should-I-not-explain internal debate, which usually ends in me mumbling something equally incoherent as my kid, and just wandering off.

Socially awkward penguin, that's me.

Birthday parties are, for us, like some sort of sadistic showcase of all of the neurotypical skills in the world, spanning all age ranges, and I can't help but keep a running catalogue of the ones my kid does not possess.  And worry.

A real barrel of laughs at social get-togethers, I know.

Little C had his good moments, too, though.  He did (briefly) engage one of the birthday kids in an observation about (what else?) a Cars 2 figure.  He later cheerfully handed a toy to another kid, and I hoarded those moments like a miser for the rest of the afternoon.  I'm trying to remind myself of all of the positive progress my kid has made over the last year, how people who haven't seen him in a while constantly remark on how different he is now, how much happier he seems.  That's all that really matters, right?

That he's happy, whether the definition of that happy is his perception of it, or mine.

Sunday, February 3, 2013

I'm still alive

According to Blogger, it's been a long time since I've logged in to post.  In fact, I'm pretty sure Google glared at me accusingly after I entered my password.

We have a very complicated relationship, me and Google.  Mostly, Google just runs my life and I'm all, "Okay, fine.  I'LL GO PICK UP THE KIDS, GOOGLE NOW, SHEESH.  I TOTALLY DIDN'T FORGET."

In all fairness, Google (YOU BULLY), I have had a lot on my plate.  I studied like a crazy person (and passed) a third test for work, among other things.  Don't ask me how to calculate a base rate using the pure premium method, because the hell if I know.  Apparently there were more questions on that test that I did understand than ones I just stared at in total bewilderment, so I passed.  Which is totally good enough for me.

I've got to take another one in another two months or so, so look for another bout of abject panic, followed by total blogger silence around that time.  Fair warning.

I've also begun semi-renovating our house, possessed by some mad urge to install new flooring and decorate a little.  You know, since we've been in the house almost six years now, I figured it might be nice for it to look decent, and all.  Apparently hanging things on walls does a lot for aesthetics.

Really, though--we moved into our freshly-built house and had a baby six days later, so decorating was pretty low on the priorities list at that point.  Add in an autism diagnosis a little over two years later, and I was all, "What do we need stuff on the walls for, again?"  Now that I'm not completely consumed with therapy twenty four hours a day, I finally feel relaxed enough to buy a damn picture frame once in a while.

It's a nice feeling, that.

In addition to studying while consuming massive quantities of caffeine, and wandering around Pier One with what is apparently a large blinking "I DON'T KNOW WHAT I'M DOING" sign over my head, I have also recently become consumed with photography.

I know, right?  I think it's a sickness.  Apparently I'm completely incapable of learning new things like a normal person--I have to eat, sleep and breathe them until I get everything figured out to my satisfaction.  I mean, I'm starting to critique lighting in every random Facebook cellphone picture.  I notice bokeh in commercials.

It's BAD.  And I'm not even halfway decent at it yet.

My first official lesson is tomorrow, after which I will post all of the pictures my instructor frames and sets up for me, and shamelessly take credit for them.

What?  I'm pressing the button, sheesh.

In the mean time, know what else consumes me pretty much totally, in addition to photography?  My kids.  And autism--that fickle bastard that's never far around the corner.  Sometimes (as in the recent crop-up of echolalia that is driving me to the brink), I hate it with a passion.  It leaves me worried, stressed out, and bewildered.

Other times, though?  It's almost beautiful, the symmetry that my child just inherently feels.  I can't find my shoes most mornings (and apparently neither can he), but every single Cars 2 and Thomas the Train toy he has is constantly accounted for.  I'm pretty sure he could give me each one's GPS coordinates, if I asked.

I don't ask, but I am trying to capture this ghostly beauty that autism has brought into our lives.  On the days when I think I'm going to cry if I hear the same string of words come out of his mouth one more time, these few snapshots have been centering me, somehow.

This is what autism looks like in our house.

Cars 2 - Tractor Tipping.  No joke.

Everywhere.  Trains are everywhere in my house.  
Also: BOKEH!

A rare full-on face shot.

Who loves reading about Cars 2?  WE DO!

The troops.  Every last one of them.

Seriously, Memory played the NORMAL way is for suckers.

Lightning McQueen's number is 95.  WHO KNEW?