Hard Work

You know all those posts I haven't been writing? Here's why: Back in January, early January, N (finally, FINALLY) got his "official" M.D.-certified autism diagnosis (PDD, to be specific), with a nice little side order of Generalized Anxiety Disorder to go along with it.

And for some reason--some truthfully unfathomable reason--I've struggled with how to tell you about it.

Which is insane, since I've spent the last howevermany years I've been blogging talking about his differences, my deep-down knowledge that he's Not Like Other Kids, no matter what anyone has in the past or will in the future say about him. This was no shock. I've fought for this. Hard. Long. And hard. (It was really hard. So it bears repeating.) And I was...gosh, happy seems the wrong word. I felt hopeful. Vindicated. Not only because I knew for sure that we've been going in the right direction, but that now we might get some help from the outside, from others. I announced it on Twitter with exclamation marks and received congratulations. Lots of pats on the back. Go, warrior woman. Go, mama bear.

And so it's been a shock to find my fingers faltering every time I try to write about it here. Just like it was a shock when I got the official diagnosis letter and suddenly felt scared, and sad, and way less victorious than I'd been when we'd sat in the doctor's office and talked the words out loud, me saying, "Yes! Yes! That's what I've always thought." It wasn't like it was NEWS to me, for crying out loud. It was just a strongly worded missive to the school district that laid out the psychiatrist's concerns about N's future should he not receive adequate supports. And when I say strongly worded, I mean sledgehammer-slammed-onto-a-pinkie-toe strong. I mean OUCH, is what I mean. But it was nothing I didn't already know. It was nothing I hadn't already dreamed, tossed and turned over, cried about.

It was a good letter. And it worked. It worked really, really well.

It was, in fact, what led to me sitting dazed through not one but TWO three-hour-long IEP meetings--one in late February, the other just a couple of weeks ago--with Baroy and our advocate on either side of me. It was what led to me sitting there, wondering why it was that listening to all those people (somewhere between 8 and 10 of us were in the room, coming and going, throughout the times we met) saying exactly what I've spent at least the last two years BEGGING them to say made me want to pull my shirt over my head and hide under the table. We checked off boxes: Primary special-ed qualifying disability, autism (which covers the PDD diagnosis). Secondary special-ed qualifying disability, OHI (other health impaired, which covers the anxiety diagnosis). Tertiary special-ed qualifying disability--and this one required an added sheet of paper, because the official IEP form only has room for TWO qualifying disabilities--specific learning disability.

"He's hit the trifecta!" one of the district administrators said, jokingly, smiling at me, knowing I should have been happy, knowing this is what I'd fought for. Hard.

He was right. I should have been happy. I wasn't.

I felt hopeful, especially once I saw the list of additional and/or enhanced services they were willing to give him. (Not nearly as many as the psychiatrist recommended, but when they didn't even blink at doubling the OT hours they'd previously fought to decrease, I knew we'd made significant strides.) I felt vindicated. (It's not just me! I'm not just some kind of developmental Munchhausen by proxy mom!) I felt exhausted. But I wasn't happy.

Autistic. Anxious. Learning disabled.

But still N. No different than the N of three days, three months, three years before.

And yet hard to talk about. Not because I was embarrassed or ashamed or in any type of denial. But because I felt like I owed you something significant, something transcendent, something important to repay you for all the time and back-patting and support you've given me. There I was, sort of sad and vaguely disspirited, feeling like I needed to buck up, to rise above. To figure out the graceful, thoughtful, meaningful words--the absolute right words--to put down here. To write something that moms of special needs kids could read and hold on to. To make this count. To make the struggle and joy and pain and hard work--did I mention the hard work?--mean something.

It didn't happen. Not in January, or February, before it had all been settled, but that was OK, because I figured I just needed time to digest, to know what happens in the end. But then came March, and with it the closure I was looking for, IEP-wise at least, diagnosis-wise for sure, but I still haven't figured it out.

The only thing I know is that if I were to wait until I've figured it out, you'll never hear from me again. And so you get this. And hopefully more of this. And maybe a little of that. And some of the other stuff, too. It's not what I wanted to give you, but it's what I have to offer.

It's hard work. All of it. Hard work. But worth it.

A Haiku, by Em

Em is a writer. At 12, she has a much more mature 'voice' than I did at her age. It's in the vocabulary and--I think more interestingly--in the innate sense of humor, of irony, of sarcasm that she's developed.

(Her spelling and grammar, on the other hand, are atrocious. She gets that--along with a good amount of her talent--from her dad, whose ability to write dialogue is astonishing, but who, for instance, puts arbitrary questions marks at the end of statements. Drives me insane.)

Last night, as just a small part of her English homework, she had to write a poem. It wasn't five minutes between the time she told me she was going to do a haiku and when she came out, grinning, to read me what she'd come up with:

I enjoy talking.
I probably talk too much.
Just ask my teachers.

Self-awareness. It's a key writerly trait, don't you think?

These Kids Slay Me

From Em's Facebook account:

Em Lastname: I am REALLY REALLY glad that my English project is done!

Friend of hers: Changed it from Englidh?

Em: Yeah...kinda had to! ;p

A Public Service Message from N

Dear Family,

You know the heater near the bathroom? I accidentally dropped some H2O on the heater by accident. It smells bad. Don't go in the hallway!

P.S. It smells bad!

You know, I had written a whole post about this note, which I found on the white board in the kitchen the other night, right before N went to bed. It talked about the challenges he's had in writing, and why this one note is a real breakthrough.

But you know what? It took all the fun out of it. (H2O! He slays me!) And so, instead, I'm going to say only this:

It really did smell bad.

Hope and Wonder

We're in the garden; it's a beautiful Sunday after a torrentially rainy Saturday. Em's helping me weed; N's playing in the dirt, which is somehow supposed to be helping me, but isn't at all. Still, it's making him happy, so it's all good.

Suddenly, a bee buzzes past N's head. He jumps, startles, freaks out. This is what he does when there's a bee. It's OK. He retreats into the house, gathers himself.

A few minutes later, he comes back into the garden.

"Was I ever stung by a bee when I was a baby?" he asks.

"Nope," I answer. "Not that I can think of."

He ponders for a moment. "I hope my friends were stung by a bee when they were a baby," he says. (He's referring to our Sunday Gang of friends, who are on their way over.)

Now I'm startled. "Why would you hope that your friends were stung by a bee?" I asked.

He looks confused, and just as he says it, I get it. "I don't hope that," he says.

"I think you mean you wonder if any of your friends were stung by a bee when they were babies," I say.

"Right," he says. "I wonder."

I wonder if he knew what he'd said. When he heard me repeat the sentence with the word 'hope' in it, he didn't seem to recognize it as his own. But if I hadn't supplied the word 'wonder' for him, he wouldn't have come up with it on his own, not right away.

Still, he knew what he meant; he knew what he meant to say. That's not what I'm worried about. I worry about the fact that, so often, the sentences that come out of his head all mixed up and jumbled sound like real sentences. Like this one. People think he means what he's saying. But his yes can mean no; his up, down; his black, white; his hope, wonder.

I wonder whether I'll ever really get the people who are supposed to help him to see these so-hard-to-see deficits in a reliable way. I wonder whether he'll ever be able to make himself really, truly understood, to find his way to words that don't dance away and around him all the time.

I hope so. I hope he will. It's what keeps me going.