Wednesday, March 31, 2010

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.


Anonymous said...

It is, yes, so very hard. I'm glad N will get the support he needs at school. I understand why you have such mixed feelings, I think it's the same for all of us--or it is for me, at least.

Niksmom said...

Oh, TC, I think so many of us could've written something like this at some point. Having answers, resolution, doesn't mean you're happy about it. Relieved and having a clearer sense of how to help N IS a good thing. But the diagnoses are still tough no matter how anyone spins them.

I remember the relief we felt when someone finallly gave us a diagnosis for Nik. In the waves of relief which washed over us, a tsunami of grief snuck in. It surprised me since I'd been vindicated. Years later, it still sneaks up on me from time to time.

Your N IS still the same boy he was all those months, years, days ago. The only difference is that now you have other people who will help you help him. THAT is a good thing and worth celebrating.

The bitter and the sweet. Just in time for Passover, eh? xo

pixiemama said...

Yes. After Foster was evaluated - and I had already known for months that it was, indeed, autism - after the neuropsych had already told me the results of the test... I sat in the car with the official letter of diagnosis keening and wailing.

It's good to get them the right diagnosis, which, hopefully, will get them the right help, but no, it is not easy. It's not the celebration we thought.

Big, big hugs, my friend. Big hugs.

Anonymous said...

I didn't have to fight for Charlotte's diagnosis, but it didn't come right away, and when it came, although I knew it was coming, it still sucked.

I totally understand how you're feeling. I'm very hopeful that the supports at school will help N.

zb said...

Cut yourself a thousand breaks. I read here, but never, ever, feel like you have any obligation to include. I'm an anonymous reader. I read because I like reading about kids, Em and her haikus, as well as N's triumphs & tribulations. My reading helps me understand kids, both my own and other people's.

But, you have no obligations to me. None.

Ambre said...

Aw, you know I asked you about that. And you tried to deny that it all hit you like a ton of bricks, and I could tell it had.

Of course it did. It always does. No matter how much you try to convince someone that your child has x disability, it always sucks when you find out you're right.

I don't know, I guess before that, there's always the "maybe I'm wrong" in the back of your mind. "Maybe I'm being silly. He's probably just a normal kid and I'm being a crazy psycho mom." And no matter how small that voice is, having it silenced is like... a ton of bricks.

Hugs. You did the right thing. He did need this to keep progressing.

Ambre said...

p.s. don't listen to zb, you must tell us EVERYTHING!

Leila said...

I so hear you. Because I've not been able to write about Linnea, or even fully READ the whole report the psychologist sent us. I don't understand everything that is going on because during the meeting with said psychologist, I quietly, without making a sound, fell apart. You know, the whole panic thing, buzzing, shaking, and all the while I was pretending to listen.

So yeah.

I'm glad you have the words, the letters now. It will, as Niksmom said, bring help from other people, and that's important.

You did good. You're helping.

siamese said...

Yes. Lots of hugs. When Alex was diagnosed, even though I knew what the answer would be, it felt like a sucker punch to the stomach. I gave myself a couple days to grieve then went straight to the school district, papers in hand. Leila can vouch for how far he's come since then. :)

Scott said...

I think I know exactly what you mean. My N has developmental dyspraxia, and, while I'm pleased to finally know with certainty that that is his dx, I still find it EXTREMELY hard to somehow "post" that for all to see. In an understanding community like this blog, sure...but to the outside world? I actually want to start a developmental dyspraxia foundation, since there doesn't seem to be one here in the US...and I personally know someone who could use his existing therapy practice to help out in the effort...but somehow something is preventing me from "going public" with it all.

AB said...

I love you and am here for you...