This Is

I did something scary tonight.

I submitted an essay.

Parenting.com 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.

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?

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 still...um, 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.

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?

Freida. Because she just looks like a Freida.

After yesterday's uber-cheerful post, today I give you Freida. Or approximately 1/4 of Freida, whatever.

Let's just pretend I bought the head and not the rear end, shall we?

Who is Freida, you ask? Freida is a goat that I (mostly) bought through Heifer International, and she's going to change the lives of her recipients, along with her partner in crime for a child here in the States, Paul-The-Night-Night-Package.  Rather than blow that money on things I think I need, I decided to use it on something I know people less fortunate need.

In the wake of the Newtown tragedy, I thought a lot about what I could do.  Unlike a national disaster, there are very few concrete things to do to help in this type of situation.

Thanks to the magic of social media, though, I came across this article, and got inspired.

Here's what we can do.  We can put a little more love out there in the world, in memory of those lost, one small act at a time.  It's what I would want for my child, because acts of kindness last so much longer than just writing a check.

Join me, and pass it on.
#26Acts


*To donate to Project Night Night, providing comfort for a homeless child, click here.

*To buy a surprisingly useful farm animal for a family struggling to feed their children, click here.

*If you're too poor to afford 1/4 of a goat, or just all gift-ed out, click here to find out how you (and your kids) can create a winter wonderland for the kids of Sandy Hook.

No words

I have thought long and hard about adding my voice to the many who have cried out for the victims of the CT school shooting in the last few days.  Part of me wanted to keep silent, for so many reasons.  Others have done it such justice (what justice can be had), how could I have more to say?  A more honest part of me simply did not want to dwell on the details of the horror.  Addressing it meant thinking about it, and I was not ready for that.

It did not happen to me--to ours--but it could have.  Newtown, CT is no more or less random a location than where we are, and mental illness certainly no less prevalent.  Although our television has remained firmly tuned to either children's programming or Christmas specials in the last few days, details have nonetheless leaked through to me.

I gave in yesterday, and wept at my computer for children who pleaded for Christmas while a stranger stalked them in halls that should have felt safe for them.  As I tucked our Christmas elf into yet another hiding place last night, I wondered how many of the parents of the children killed that day had done the same, never dreaming that it would be the last time they would see Christmas joy on their babies' faces.  My husband and I held each other last night in a rare moment of quiet, and I reflected on the six adults who would never go home to their loved ones again--the woman who wouldn't get her Christmas Eve marriage proposal, the mother who wouldn't get to see her own children grow, the psychologist and principal and brave, brave teachers who should have had the rest of their lives to pass on to others the selflessness they displayed that day.

Like other parents all across the country, I held my babies a little bit tighter last night, let them have that extra piece of Christmas candy, and shrugged off those clothes left lying on the floor.

It's amazing how little the small things matter when they're put into such large perspective.  My kids didn't know what was going on, but I enjoyed the look of hitting a gold mine on their faces, as they shoveled gingerbread-shaped marshmallows into their mouths.

I wondered, too, about the remaining family of the shooter--about the father that grieves both for a son that he could not save, and for the horror that he left in his wake. For the brother that must wonder what he could have done for his sibling, and when.  I don't know this family, or the dynamics of their relationship, but I know pointing the fingers of blame in their direction now helps nothing and no one.

My perspective is a little different here, as I'm the child of mental illness, you see.  It was on a night similar to this one that I ran out into the living room of our home when I was a child, to find my father brandishing a shotgun and screaming of "those people" coming for him.  I remember the alternating rage and panic that flitted across his face, and--only moments later--the calm conviction and earnestness in him as he detailed his delusion for us.  I remember the biting cold of the car that I sat in after my mother hustled me out of the house, and the vivid red of the ribbon on the Christmas bell that hung around my neck.

So, too, I remember an older brother, similarly afflicted, and the sight of him slowly, methodically removing a healthy tooth from his mouth.  I remember the look on his face as he did it--no pain, no fear, just a look of intense concentration that remains with me to this day, all because he was angry over something I can't even remember.  The sight of that tooth calmly left lying in a pool of blood on a night-side table is forever etched in my mind.

Since the shooting, my social media feeds have been filled with those crying out for more gun control, less gun control, first blaming Asperger's for the violence, then decrying the link.

In times like these, we all want to pinpoint a reason for the horror, something or someone concrete to blame, so that we can feel as if something like this can be avoided in the future, if we just enact one more law, if we just know what to look for next time.

Mental illness comes in so many different forms--some born of trauma, some born of genetics, and we may never know what truly went on that day in Newtown.  We'll certainly never understand it. Maybe someday minds greater than mine will come up with something to prevent this sort of horror, I don't know.

Until then, I'll focus on doing the only thing I do know how to do: raising my children to know that they are loved, every second of every day, and that there's nothing on this earth that they cannot come to me with.  In so doing, I hope that they will do the same for their children, and maybe eventually we can all populate the earth with more of the types of people who shepherd children into closets before taking bullets for them, and less of the madmen themselves.

Pippa. And not the royal one.

It's situations like this that give me a good chuckle at my agnostic husband.
Also, they make me a little smug, and I kinda enjoy being smug, as I don't actually GET to be smug with good reason very often.
This week was a hard one. After losing our girl, we were all a little out of sorts. Big K especially had a hard time of it, and the kids could definitely tell. As groundbreaking as the words were, it still broke my heart to hear little C tell his daddy, "Don't cry. It's gonna be okay."
Never having had much use for any of the dogs, he himself was fine--but he was determined to comfort his daddy in any way he knew how.
We discussed the possibility of (eventually) getting another dog. We're big fans of rescue animals, so to us it's not about getting another pet as much as it's about saving a life, and enriching ours in the process. We agreed to take things slow, just start looking around and getting the lay of the land.
Big K found a dog on a rescue site that was going to be at a local pet store for adoption last weekend. He liked the look of him, his description seemed to mesh with our base criteria, so we agreed to go look. Just look, we decided. If it felt like it would be too soon, we'd let the kids play with the dogs a little, maybe get our name on a mailing list, and leave.
What followed was an almost magical situation, the kind in which I feel God knew exactly what we needed, and proceeded to drop it into our laps with a tidy little bow.
We showed up to see "Jasper," but couldn't find him amongst all of the other various canine candidates. A little disappointed, we were about to leave when we decided to ask the very busy looking lady at the table, just to make sure he wasn't there somewhere.
Turns out, ol' Jasper's foster mom was taking a smoke break outside with him, so out we went to check him out. We were disappointed again, initially. Jasper was on edge, marking his territory and barking agitatedly at passing dogs. We'd had in mind a more docile, friendly female, and we could tell he wasn't QUITE what we had in mind. Again, we turned to go.
Just then, we heard one volunteer talking to another about some horrible person who'd just DUMPED this poor little dog off with them, minutes before. The dog had been found wandering around a neighborhood, begging for scraps and bone thin. Attempts had been made to find any possible owners, but by all accounts she had been wandering, abandoned, for weeks.
When the workers explained to the woman that they were a non-profit organization completely dependent on volunteers and foster homes, and didn't have anywhere for this dog to GO just now, she snapped irritably, "Fine. Tell me where the nearest pound is."
Knowing that the pound would mean a death sentence for this dog, the wonderful volunteers took her, no questions asked.
Listening to their story, I had it in the back of my mind that surely the dog wasn't what we were looking for. She would be old--and we couldn't go through losing a dog again any time soon. Or she would be big--too much for our small-ish house and small-er kids. Worse--she would be short-tempered, and not at all suitable for a family with rambunctious children still learning the difference between roughness and play.
But we asked anyway.
She was small, we learned. A chihuahua-daschund mix, only ten months old or so--and initial reports were that she was very, very sweet. She was getting her shots just then, but would we like to stay and check her out? Even if it was just for the weekend, until they could find someone to foster her with?
Of course, we had to. How could we not?
She landed in my husband's arms, shaking like a leaf but pitifully eager for attention, and he looked at me and simply said, "Okay."
She's been with us for three days now, and Pippa (or "Hot Mess" as I've come to think of her) has made herself at home. Initially skittish, she is now bossing around our Italian greyhound, hoarding children's shoes the size of her head, and eating like a truck driver. In between, she has lavished affection on every one of us (even little C, who is decidedly NOT IMPRESSED with the little whirling dervish intent on stealing his shoes and determined to snuggle with him against his will).
There are few feelings more satisfying than rescuing an animal--watching them go from terrified and suspicious, to adoring and spoiled rotten.
And all for just the price of a little love.
Thanks for bringing that back to us, Pip.