The Other Mother

We were at Weeyum Wise's 9th birthday party.

It had been a difficult decision as to whether to go; it was being held at the Big Gym, which has always been a rough place for N; he loves it, he hates it, he wants to be there, he can't be there. And to make it worse, there wouldn't be a single other child, aside from Weeyum, whom N would know.

Weeyum's mom--my lovely friend J--suggested that, if N or I would prefer, we could do a special day with the boys another time, instead of putting him through this sort of potentially upsetting social scene. But N had seen the invitation, and he was dead set on going. So we went.

It was--if you use a neurotypical measuring stick--a complete disaster. N refused to take his socks off, refused to even enter the room where the other kids were playing. When they left the gym and went into the party room to have pizza and cake, N grabbed the chair right next to Weeyum, but soon abandoned it to come sit on my lap, insisting on having my hands over his ears while the rest of the kids sang happy birthday, refusing to eat any ice-cream cake, refusing to be in the group photos.

During the time the kids were in the gym, N wandered around the lobby, watching the others through the large windows, eventually talking to one of the mothers, one I didn't know, hadn't met. He was flirting with her, actually, as is his wont--chattering away, asking her to play with him. I had moved into the party room to help J set out plates and such, and also (no need to pretend otherwise) because I was embarrassed by N, by the way he was acting, by the way he was standing out. I was embarrassed because of what I assumed the other mothers were thinking about him. (I'm not even going to link here. If you've been around the special needs/autism blogosphere this past week you know why that was on my mind, why I was thinking about the other mothers' judgements of my son.)

And I was even more embarrassed by myself, by my embarrassment. (What kind of mother...I berated myself. Really, the only one behaving badly here was me.)

After I while, I noticed that this same mom was still interacting with N, handling him just fine, never once looking to me for help or intervention. At one point I saw J go over to N, trying to get him to join the group, and this mom just looked at her and smiled. "He's scared to take his socks off," she said. "He's fine here."

After the gym party was over, we moved to a nearby park to open presents. Again, N refused to join in with the other children, seeking the same mom out, asking if she would play ball with him. I was talking with another parent, watching; I saw her say a few words to her older son, a boy around N's age, then open a juice box for her younger, who was probably around five. Done, she let N spirit her away to play some game of his devising, with elaborate rules only he could possibly understand. But she never seemed rattled or upset, never sought my eyes, never seemed to want or need rescuing. So I stayed where I was, and turned my attention to the other kids.

And that's when I saw him. This other mother's older son, not too far off from the group of yelling, tumbling kids, but not part of it, either. Walking in circles around a tree; talking to himself; making spaceship sounds; gesturing with his fingers; entirely in his own world; absolutely happy.

I sidled up next to J, who was setting out some snacks. "That boy, M," I said gesturing to him with my chin. "He's one of N's people, right?"

J looked confused for a second, then realized what I meant. "Yes," she said. "Yes, he is. How did you know?"

I didn't answer, just watched him, watched J watch him, watched her see what I was seeing.

"I didn't see it until just now," I admitted. "At the gym, I couldn't have picked him out at all."

"That's his safe place," J said. "He goes to classes there all the time."

I turned to look at N and the other mom, still throwing the ball back and forth. "No wonder," I said, more to myself than to J. "No wonder she's handling him so well, so easily."

* * * * * * *

It's Autism Awareness Day today.

This last week has been one very long spate of awareness. In addition to the party, there was the Mother-Son Olympics at N's school, where he participated in most of the events, including the 'ski jump' (a leap onto a gym mat after running along a picnic-table bench). He went far on the jump, earning our team a bunch of points, and our teammates cheered him, loudly, when he landed. At which point he looked up, startled, burst into tears, shrieked loudly, and ran behind me to put his head under my coat. (That's him, after he'd recovered himself, in the photo up top.)

And then there was the Passover seder at our house on Monday, where N greeted my friend and work colleague, K--with whom he is unabashedly in love--by telling her "your hair looks weird" and refusing to offer any more of a greeting, then proceeded to completely lose his ability to deal, shrieking and wailing, when his friend C erased something he'd drawn on the whiteboard in our kitchen.

Oh yeah. I'm aware.

I'm aware of the ways in which N's place on the autism spectrum marks him as different, and the challenges that brings. I'm aware--once I've had a few days to regroup, at least--that there are and always will be good days and bad, and that that's par for the course with any kid. I'm aware that my son is special, but also that he's no more or less special than his sister. That he has special needs, needs special handling, but that the needing and the needing to be handled are themselves no different than with any child. It's just a little more challenging to meet those needs, is all. And sometimes it feels more fraught.

I'm also aware that N's interactions with the world mean that people will judge him for his differences. Sometimes, they will no doubt judge him harshly; this is, after all, a kid whose autism doesn't really look like autism, but often like shyness, rudeness, brattiness. He doesn't flap or toe-walk. His speech isn't obviously scripted or repetitive. His gross motor skills are fine--in some areas, they're even remarkable. Even parents who know what autism looks like might not always recognize N. (Though this weekend? You couldn't miss him.)

But I'm also aware that sometimes these people are not judging harshly. As I learned from the other mother at Weeyum's party, sometimes they understand, even if it doesn't seem like they possibly could. It may be because someone they love is "one of N's people," or it may be because they have a good and open heart.

Or it may just be because they are aware.

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 photographic explanation for the lack of surprise at his autism spectrum diagnosis

But, hey. He got an award--for classroom improvement!--and he went up and took it, high-fiving the (male) teacher (who I want him to have for fourth grade) who handed it to him. Last year, he refused to even go up and get the award in the first place. Baby steps, right?

Besides. Makes for an adorable, postable-on-my-blog-since-you-can't-see-his-face photo, so it's a win-win, methinks.

(And I know I haven't actually written about his diagnosis--PDD, to be specific--nor about the first part of his IEP, which was held earlier this week. It's just overwhelming. Not the diagnosis or the IEP per se, but life right now. And sifting through everything to get to the relevant information takes energy I just do not seem to have. I'll try. Soon. I will try.)

Edited to add following photo, of N before the award, surrounded by classmates, jacket over his head, and hat over it. Sorta makes me want to cry. But if there's anything that tells you things still aren't quite right in his world...