Saturday, January 01, 2011

a tangle of threads (and clearing a clog)

I think 2011 slipped in when I blinked - or possibly while I was lighting shabbat candles. Nonetheless, hiya! Time to flip that page in the calendar, eh?

I'm not calendrically aligned enough to have new year's resolutions, nor do I really have the will to rehash that goes with a year-in-review post. Still, I do have the collected points of determination, or fed-upness that compose my Change This, Dammit list. That list sort of blurs into my Things I Want To Do Daily list. Which combined, look something like this:
  • do less
  • sleep more
  • prioritizing is great, but first? learn how to estimate how LONG it will take me to do things. Remember that in so many things, I work slowly.
  • play with my sons. More.
  • learn to love Lego. (see above)
  • eat chocolate every day. (can I use chocolate as a bribe for getting up in the morning?)
  • make food that I want to eat
  • budget!!!!
  • remember that a tired child is tired. And can't do better, even if he tries. Remember that the same is true of me.
  • have dedicated home maintenance and writing days in each week - and be stubborn about them.
  • have dedicated time with my friends - and be stubborn about that, too.
  • get hugged. A lot.
  • start washing dishes with The Man. Talk about inconsequentialities. (is baseball an inconsequentiality?) Hell, talk about anything. Have I mentioned that the guy is wonderful and funny and generally fabulous? 
  • go on dates (note: find a babysitter?)
  • learn how to listen to podcasts.
  • every single day:
    • make something
    • write something
    • fix something
  • be loving and loved.
I've been working on my make/write/fix challenge for a little while now, and I'm loving it. But I have to admit that I've been making and fixing far, far more than I've been writing. To my chagrin, I seem to lack a crucial degree of recklessness, or possibly a degree of ruthlessness needed to write some stories down. Or, to put those particular posts up on the blog. And, that not doing the writing and putting up can clog up the rest of the works, so that I can't push past the things I'm not-saying, or not-writing, and silence ensues.

I am not good at silence.

So, I'm going to inaugurate 2011 with the first of the clogged posts. I suspect that the blog's current quiet state will serve me well here - this is going to lead to a subject that seems, oddly, to piss people off. Which makes the following all the more appropriate.
March, 2010

Peace, this month, is two hours of sitting on a nicely lichened rock by a lake, a glow of sunshine, and a suspicious mother duck herding her wee bits of fluff away from the two chatting persons.

I did go home and need to scrub bits of me, having noted all of that lovely, flourishing poison ivy - and later, admired the odd, itchy pattern on one leg. But all is well now, and the 80's style shocking pink arms (and nose) have faded to a merely retro hot pink shade. And, well, I may or may not have spent the past 40 minutes looking up bug bites, thanks to a casual hey, did you get bit? from the Man, glancing at the back of my neck. Solid, big swelling. Hot. Ow. (note to self: not brown recluse spider. Also not tick. Whew.)

With the Toddles leashed to the toilet by some really appalling GI virus, I've got a whole lot of indoors ahead of me. So I'm storing up that sunshine, the warmth of the rock and the patterns of the lichen. And the wry grin in her voice, as she narrated the odd rock and shoal of her days. Followed by a quiet thoughtfulness as I told her: the preschool wants us to get the Toddles evaluated. We had a meeting yesterday, and I've started making calls.

I tell this story badly, choosing details that can only prove how wrong we all are (your child sits on the toilet for 45 minutes? mine has sat there for an hour - and he's just fine) and how flawed our idea of 'normal,' or 'age appropriate' must be. We must need reassurance that the Toddles is fine. Or perhaps we need perspective on his age - or refocusing on his strengths, and the things that make our boy that wonderful twirl of light and joy. Or maybe we just need a nice barbituate and a glass of wine, hm?

I never thought that he was autistic, our pediatrician said. I nodded - but knew from her response that I'd told the story badly, said the wrong things, my chosen details pointing in the wrong direction. Oh, I don't think he is, either, I said.

Kids are just like that, said a lovely person. They grow out of these things. I shrugged, resisting the urge to degenerate into a defensive whine.

Oh - but my son/daughter/goldfish is just like that, said another, worriedly. I watched that parent reassessing their child/parakeet/magazine rack, looking for the cracks that suddenly might be there - particularly now that she's heard me worry that 'normal' has sidled away, excluding the Toddles. The gulping lump of sadness in my throat is sidelined, and you know what? I'm slightly irked by being upstaged. I'm going to focus on that, rather than on the familiar, edged fear and sadness that come from watching your child for fragile, ruthless flaws.

I can't tell the story well, and I'm not going to try to do it here. It's all tangled up, each thread complexly looped and knotted somewhere on that complex spectrum** of kid. I can't imagine picking the right threads, can't figure out where I'd need to start, but I also can't stop trying. And being told not to worry, to read a book, to get perspective, to get a life, a hobby, some sleep, or to learn how to parent without slapping diagnoses on everything. Or heck, just learn how to parent. Wouldn't he be easier to manage, if I were only better at my job? Which may be fair, and I hope that you'll excuse me if I start throwing things. While shrieking.

Don't you think that I've already asked those questions? Don't you think that those questions have weighed in my reasoning, etching their bitter shapes on my answers? The translation to 'but he's so normal' might just be, 'don't diagnose him for your convenience,' or 'don't label him for your failures.' I know that. It might even be true.

Mine is the sweet kid, who loves to be carried - but doesn't want to hug you. Not yet. Maybe not ever. He's a crackling bundle of energy, but doesn't want to leave the house - even to go to the park. He's the friendly kid, who helps you find a chair at circle time, but he doesn't know how to say hello, and definitely doesn't know how to join a game. Or what to do, if invited, but if you could read the script that he's worked out for this interaction, then maybe it'll all be okay.

He's the caring kid, who asks me if I need a hug on the tough days, but is shocked by your tears when he kicks over your sandcastle, draws slashing lines across your carefully lettered homework. He's still waiting for me to explain why it's not okay to bite, or scratch when angry, or that a pinch isn't just a different kind of handhold.

True, he's the silent kid at music time, but he knows all of the words to the songs, and sings them to himself when we're alone in the car. The bloodmobile is a silly idea, he says, criticizing the lyrics. It's confusing! You have blood and it moves through you, but it's not a bloodmobile. But his favorite books are the simpler board and picture books, more rhythm than language, more picture than narrative. And many days, he asks me to shut the music off, because it's too much sound. Unless, of course, you let him listen to the same song over and over and over.

He's the kid who makes the same, simple, two-dimensional shapes with Lego - until he's built one, and then he adorns it elaborately. He's a lover of complex kinetic puzzles like this one, plotting complex, counter-intuitive routes to his goal - and also can't figure out which article of clothing to put on first in the morning. Or what to put on his toothbrush first, the paste or water. But he'll light up with pleasure if you show him.

He's the oh-so verbal kid, eloquent and fascinating, but his words can spill out, shocking him. I'll hiss at an insult, then realize that he's near tears. I said the wrong words, he wails, and his distress is so sudden and raw that I pull him into my lap. Slowly, he tells me what he meant to say, or what tangled around his words, and I thank my lucky stars for my insightful, communicative son. But that flow of thought and language vanishes three, four times daily, when he shuts down so absolutely that he cannot speak. Doesn't know that you've spoken, even if you stand in front of him.

You can try talking to him, maybe say his name, or even put a hand on his shoulder, but his eyes are wide and distant, and they don't really see you. He's somewhere else, his mouth sucking and his skin focussed on the specific touch of a specific, worn fabric, brushed just so over his cheek.

When the Eldest does that, feeling for the rub of my skin over bone, he's balancing himself. But he's there. I can crack a joke, catch his eye, lift a wry eyebrow, and he'll respond. The Toddles goes deeper, maybe, to balance himself. My boys are points on a spectrum, but I couldn't tell you where the center lies. Not sure it matters.

I'm not afraid of your child, someone told me, gently. He looked me in the eye. But my tongue tangled, remembering the OT, the Eldest's rebellion, and my belief in that damned bucket. And the Toddles' face, earnest, bewildered, intent, gleeful, or lost in a need for balance.

I am, I wanted to say, but it wasn't true - was too melodramatic to be true. Besides, fear is just one thread in this story, and couldn't possibly be the right one to choose.

** often, when people talk about a "spectrum" in relation to children, they are, of course, talking about the autism spectrum. I think people should talk more about autism, but I wince at the casual use of "on the spectrum" for autism-specific descriptions. Autism has a spectrum, hemophilia has a spectrum, metabolisms have a spectrum, temperaments....etc. So, when I say, "spectrum of kid," I mean exactly that.


Joy said...

I love you.
So, let's start with the hugs.
Then a nap.
For about three weeks.
And that long nap, my dear cousin, is on the spectrum. Of what, eh, trying not to care anymore. Maybe the spectrum of what we need being just *that* much different than what someone else needs, right *now*. As if any of the many spectrums is only linear, as if everything isn't just as complex as we fear. As if the complexity isn't beautiful and mighty and awesome and great and terrible.

Let's try that hug again, k?
It's a good place to begin.

Libby said...

A very happy New Year to you, too.

I'm trying to figure out what part of this may tend to piss people off. Is it the subject of autism and spectrum? Or the whole idea of diagnosis and dismissal, whether something is a quirk or a stage or something that needs to be fixed?

Wherever this thought process leads, I will be happy to follow, since your posts help me sort out my own thinking about my son.

Yours are very fortunate to have you.