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.


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.