Thinking of Others First

An instructor has left one of N's after school programs under uncomfortable circumstances (the who, what, and where are not my story to tell, so I apologize for vagueness). This will affect N, since this person is both his instructor and has children in the program as well, including a boy named Keith in N's class. And so as we headed there today, I relayed the news to him.

I had, mind you, talked to several friends with children in the program as well, and we'd talked and discussed and dissected and gossiped, mostly about how it would affect us and/or our children, and how we ourselves felt about it. I, I, I, I said. Me, me, me.

N's first comment, on the other hand? "Oh, no. I feel really sad for Toni. Keith is her best friend. She's going to be very sad."

Once again, and please say it with me…Autistic people lack empathy MY ASS. *I* lack empathy; there are so many things, places, and people that I am simply OVER these days.

My kid, on the other hand, DEFINES empathy. I have tons to learn from him.

Same Old N

School started today. My first-born BABY started high school. I cannot say any more about that, or I will begin sobbing, and it's just unseemly to sob over your laptop keyboard when everyone's already asleep in the house. So yeah. High school, for the love of Pete. She's taking French, and modern dance, and a medical biology course that's somehow different from regular ninth grade biology, and is taught by a woman who works as a microbiologist on the weekend. She's taking algebra, and an English course in which she'll be reading Shakespeare, and a drama elective in which her TA is a guy who played Voldemort in a version of "A Very Potter Musical," which Em and her friends saw earlier this summer.

My baby's drama teacher is Voldemort. Can you tell we live in LA?

N started fifth grade today, which makes me much less likely to burst into tears. Especially since he got the same teacher he had in second grade, the teacher we all loved so very, very much. His assessment of the first day of school was that it was "perfect." Can't ask for more than that.

The story I want to tell about him, though, is really more about his friend A, a girl he's been more and more attached to as the years have gone by. She's the friendliest kid, sweet as pie. N had been worrying about her as school approached, because of a family situation he doesn't really understand enough to talk with me about, but which led him to believe she might not be returning to school this year. So, after we'd determined which class he was in (don't ask about the not-telling-until-the-morning-school-starts thing), and who his teacher was, the first thing we did was scan the class list (there's only one full fifth-grade class in our teensy little school of just over 400 kids) for this girl, and there she was. We all heaved a sigh of relief.

Which meant nothing when we arrived in front of the classroom and actually SAW her, of course. She was chatting with some of the other girls in their grade, but eventually saw us, and made her way over. N's response to her cheery, smiley, enthusiastic hello? He crossed his arms over his chest and turned his back to her.

I started to cringe, to apologize to this tiny 10-year-old. But before I could get even a whisper of a he's-just-nervous-because-of-the-first-day-of-school-but-he's-really-excited-to-see-you explanation out, she turned to Baroy and me, her smile not faltering one second. "Same old N!" she said, her grin possibly even widening some. And then she waited for him to collect himself, to peek around and smile back at her, if only for a second.

Would it be overly dramatic of me to say that I had a tiny little epiphany in that moment? It might be; but I did. And it was this: It's not all going to be about N learning to fit in with the other kids. It's also going to be about the other kids--not all of them probably, but some, enough--learning to appreciate N for who he is, quirks and all.

It was one of the first times ever that I saw in action what I often hear my special-needs-parenting peers talk about--advocating not for cures or the forcing of square pegs into round holes, but advocating for acceptance of our kids as they are. Making sure people see them as they are, as WHO they are, and hoping...no, EXPECTING...at least some of those people to smile and say, "Same old N," as if that were a good thing.

None of which is to say that I don't believe N needs to learn how to greet a person he hasn't seen in a long time, to figure out how to handle that rush of emotion--even positive emotion--and not need to shy away or shut down. I'm not implying that at all. But if he never quite gets all the way there? My hope for him is many, many more As in his life; people who will see that trait as something uniquely N, understand where it comes from, and simply accept it. Accept him. And perhaps, even, smile affectionately as they do it.

At the Dog Park

I vacillate on the autism thing, and how it applies to N. I use it around the school, because it is a strap, a grabbing-on point, a way for people to understand my son and--very much more to the point--to justify putting forth time, effort, and especially money to help him. I use it because doctors and therapists have used it to describe him. I use it because it's the primary disability listed on his IEP. But there are so many ways in which he doesn't seem, to me, to fit on the spectrum part of the spectrum. I describe him, often, as the triangular peg who not only doesn't fit in the round hole, but doesn't look all that much like the square peg, either.

And yet.

And yet, professionals of all stripes see him on a regular basis, and talk to me about him with concern about his disabilities, or with delight over his abilities, or with awe over the way he turns the former into the latter.  They never say to me, "You're a fraud. He's fine. There's nothing wrong with this kid. Get out of my office and stop wasting the taxpayers' money."

And yet, other moms of kids on the spectrum see him and smile at him and recognize him. They never say to me, "Get out of here. This kid doesn't belong with my kid. This kid isn't autistic. You're no longer welcome in our club."

And yet, when a girl from the school's Special Day Class was mainstreamed into N's classroom for one period a day last year, she was the one and only friend he had in class. When we go to a school function together, he looks shyly and somewhat longingly at the other kids in his class or grade, but ends up sidling over to that same girl and the other kids in her class, who he's gotten to know on the playground. When we go to a birthday party, he finds the one other autistic child at the event to hang on the outskirts and not-talk with, until they discover that they both don't mind being bopped over the head with a balloon, and then they spend half an hour doing that while the other kids do, you know, the actual party stuff.

That's what's always confused me. N doesn't identify as autistic, or even as special needs. He doesn't ask me about why he's different; despite the number of pull-outs and therapists and various other accommodations that the other kids clearly do not get, he never mentions being in any way unlike the rest of the children he spends his days with. He's never asked me why learning is hard for him, or why he needs speech therapy. (I've tried to bring it up many times, but he deflects, and I'm not going to force him into a conversation about it if he's not ready.) He doesn't even seem to realize that some of his behaviors are odd or unusual or babyish or even gross...even if I point them out as such. (His general response to any attempt to modify such behaviors is, "But I like it!") And yet? The kids he so often identifies with are all those things: autistic, special needs, different.

I don't get. Or, rather, I didn't.

Today, I read this amazing post about John Robison over at PLoS Blogs. It's worth taking the time to read every single word of it, truly. But it was this part of Steve Silberman's interview with John that stopped me cold, made me gasp with recognition, made me stop--for today, at least--wondering and worrying so much about the "fitting in":

I talked to Temple Grandin about this. I told her, “I’m afraid that when I talk to groups of people with really serious autistic disability, they’re going to think I’m a fake autistic person, because I can talk so well.” Temple said, “No one with autism is ever going call you a fake autistic person. People with autism are like dogs in the park — they absolutely positively know what’s a dog and what’s a cat. A German shepherd can come up to a dachshund and he will never mistake a dachshund for a cat.” And that turned out to be true for me.

So many times, I’ve seen it in myself going the other way. All these people come up to me at booksignings and stuff and I say, “Ah, I see you’re a fellow Aspergian,” and they say, “How do you know?” And I say, “You know, I don’t know.” Sometimes they’re insulted, because they worked so hard in school, and they look so good, and they have friends and stuff. They’re almost insulted that I picked it out. But I don’t always know what it is about them.

Whether he's Asperger's or PDD or even something else along the spectrum--something not quite clearly articulated in any DSM or even in my own mind--my kid knows he's a dog, and can find the other dogs to play with.

Nobody is going to kick him out of the dog park for being a chihuahua even if most of the other pups around are terriers and retrievers. I need to stop worrying about it, and just let him play.

I Am Aware

I am aware, these Autism Awareness days—though they're on the wane—almost entirely of the strides and gains.

It would be hard not to be, right now. They’re earthshaking. I’m surprised seismographs across California haven’t picked up on these events, or on the pride they’ve engendered in me.

I might have said it differently. I might have said that, recently, my boy has met almost every goal we've set for him. But the thing is, almost none of what has come up recently was even on our radar as a goal, because NOBODY thought he was ready for ANYTHING like this.

Here's just a taste, my friends, of the goodness that is moving forward:

1. There was a science fair, with projects required of all fourth graders. N came home early in the process, announcing that A—a girl who has long been one of the few kids he calls "friend," though there have never been any outside-of-class social overtures on either side—and he would be partnering for the project. Who picked who? How did this come about? We didn't dare ask. We just held our breaths when, a few days later, A called N on the phone to talk about the project sheet they had to fill out…and he got on the phone with her. GOT ON THE PHONE WITH HER. AND TALKED. There may even have been some giggling.

And then. THEN. Over spring break, A came over to our house to work on the project. TWICE. They worked together, and then played together afterward, and she DIDN'T WANT TO LEAVE WHEN HER MOM CAME TO PICK HER UP.

(I'm sorry about the caps. BUT DUDE. YOU HAVE NO IDEA how exciting, how…WOW.)

And then again. THEN AGAIN. At the science fair, they stood, side by side, and talked to people about their project. OK, mostly she talked. But he stayed. And he handed the kids the wave bottle they'd made together, and watched them play with it. Like that was REGULAR for him. Like it was NOTHING.

BOGGLE.

2. Then there was the annual synagogue trip to a family camp, where he hung with this counselors, and slept in his bunk, and didn't even want to spend the couple of hours on Saturday morning designated as "family time" with me; he wanted to play bball with his boys. Fine by moi. I just grinned and waved as he went off.

But that's not the boggling part of this story. Before I get to the boggling part, remember: My child's main "issue," socially, has been a form of selective mutism. He doesn't often like being looked at or noticed by large groups of people, but he can stand it. But to speak to people? Especially under pressure or duress? When called on, and not volunteering on his own? Just not something N does.

So: The tradition is that, at the end of the weekend, everyone stands in a circle and shares their feelings about the trip. It was the first time in the four years we've gone that Noah had even been willing to stand in the circle (with his counselors, not anywhere near me). When it was his turn to speak, he turned away for a second, and the rabbi started to speak on his behalf, knowing N as he does, and that trying to push him would not be useful. But then, suddenly, N was talking. In front of, oh, 40 or 50 people! Just a few words ("I just wanted to say...counselors ROCK!"), but loud and clear. I caught my breath, and heard sharp intakes all around me. And afterward, at least two other members of our congregation came up to me, tears streaming from their eyes: "Did you see him? Did you HEAR him? I can't believe it!"

3. But wait. It only gets better: To top it all off, at golf class the other day, there was one boy who was mouthing off to another boy, and it was getting ugly. And then…there was N, stepping between, telling the first boy he needed "to stop it."

Stepping between. Talking to a kid he doesn't know well. A belligerent kid. Who wasn't even picking on him. I'm…I'm…

But the best part was that, when N heard Baroy telling me the story, he grinned half-shyly, half-proud of himself and gave his shoulders a half-shrug. "I was just trying to protect my friend H," he said.

Just trying. To protect. His friend.

Not a goal. Not even a vague, half-formed hope. I wouldn't have dared.

I am aware, these Autism Awareness days, that my kid rocks.

What She Said

Don't you just hate it when someone else takes the words right out of your mouth, leaving you with nothing to say?

Don't you just love it when someone else takes the words right out of your mouth, leaving you with nothing to say?

Thanks, Kristen.

The Club

I was spending the weekend with three of the world's most amazing women; Baroy was spending the weekend helping film a documentary that involves special needs kids. (More on both of those in more detail in the not-too-distant future.)

On Sunday, they were filming--among other people--N's occupational therapist (who is, if you ask me, a not-so-minor deity). Because Em has expressed interest in seeing how filmmaking works, and since I wasn't at home, he ended up taking both of them for a full day of filming.

By the end of the day, I'm told, N was done. D. O. N. E. He began to whine and suck his thumb and just generally get under everyone's feet...and skin. So, Em told me later, during the last interview of the day, pulled him onto her lap and held him tight, giving him the oh-so-calming sensory input that, really, almost all of us would do well with when things are just more overwhelming than we can handle. But, I digress.

They were, by this time, filming the family of a boy from Em's middle school who has autism; at one point, the boy was talking about going to a Galaxy soccer game, and how he felt about it. He said he felt nervous, and the interviewer asked him why. "I get nervous being around people I don't know," he admitted.

It was then, Em says, that from her lap came the barely audible sound of her brother's whisper. "Join the club," he said. "Join the club."

----
I recently pulled aside the aforementioned OT after a session in the clinic, to ask if it was unusual that N really never acknowledges his differences in any real way; doesn't seem to notice that not every child goes to RSP twice a day, has clinic and at-school OT sessions, gets pulled out for speech, gets pulled out for a little weekly psychotherapy.

"He's ten," I said, twisting my mouth a bit. "Shouldn't he recognize what's going on by now?"

"Well," she said. "by ten you might expect him to recognize his differences, maybe be concerned about them. Or, at least, you would if...you know...he didn't have a developmental delay." She emphasized the last two words, raising her eyebrows at me slightly, ever-so kindly, but meaningfully. "Which is, of course, why he's here in the first place."

I got it. I dropped it.

But now, I think, it may not be a delay. It may just be that recognition comes in many forms. It may just be that--despite the fact that he never cries about being "different," never asks about his quirks, never really talks about them as quirks--he sees himself clearly nonetheless. It may just be that he sees himself in others, that he gravitates toward 'his people,' and that he recognizes likenesses instead of differences.

It may just be that he sees himself as part of a club. Club Quirky. Club Spectrum. Club N.

Whose Child is This?

I was picking up N at his OT social-skills group yesterday, and he went--as he always does--to hug the various therapists who work with him there. And, as she's lately been doing, the lead OT reminded him to give "sideways hugs" rather than approach from the front and sort of bury his face into their bellies.

I've been meaning to ask about this, and since there were no other parents clamoring for attention at that very second, I brought it up.

"Hey, L," I said, "why sideways hugs?"

"Oh," she said, "we're trying to teach him a little bit more about appropriate touches...like putting your hand on someone's upper arm to get their attention, and stuff like that."

I grimaced a little. "You think he's getting to an age where it's not appropriate for him to be hugging grown women like that?"

"Oh, no," she said, looking surprised. "It's actually more about the kids. You know how he is...he keeps hugging his friends in the middle of group, or wrestling, and we're trying to work with him on that."

You know how he is? Yes, I do. Or I thought I did. The child I know has pretty much never initiated body contact with his peers. I'm fairly certain that he's never even touched another child in his class. But at group he's hugging? So often it needs to be addressed?

I stood there and grinned...and grinned...and grinned at L, who looked confused. When I explained why to her, she smiled. "He did tell the group today that he likes coming here after school, because this is where his friends are," she said.

Can a heart swell and break simultaneously?

* * * * * * *

My friend A often joking chides me about my laser-sharp focus on N's social deficits to the exclusion of everything else. "If he was found in a heroin den," she'll say, "your response would be, 'He was sharing needles? Appropriately? With his peers? Cool!'"

I can't really deny it. He's hugging and wresting his friends and disturbing the group? Cool.

* * * * * * *

There are times, many times, when--despite my all-encompassing quest to get N diagnosed on the autism spectrum--I still feel isolated from the autism community. I read books, descriptions, and they don't fit my kid, they don't fit my experience. I'll flip from feeling like I have no right to complain, because so many have so much more to deal with than I do, to feeling like N's getting the short end of the autism stick--all deficits, no gifts. (If you missed my self-pitying rants on this subject last week on Twitter, you are lucky. I'm embarrassed for myself.)

I've been trying to find books in which he might 'see' himself--books that might explain why he struggles, and that he's not alone. He seems like he's on the cusp of understanding, but yet, he's not quite there. (Sometimes, my life is nothing but a Parenthood episode.) But I can't find the book that speaks to me, which I fear means none of them will speak to him, either.

Sometimes I even wonder if this diagnosis is right. Sometimes I feel like we're out here all alone, like there's no one who can share our experience, because our experience is that unique. Like we're going to have to figure this out on our own, without the community that supports so many. Not because they won't support us, but because we have no right to ask for it. Because we're frauds, interlopers, pretenders.

(The ASD apple doesn't fall far from the tree, if you know what I mean.)

But then, despite my doubts, and despite his lack of intellectual understanding of his challenges and what they mean, N shows me the truth. He's made a friend at school--a girl from the special day class who is mainstreamed into N's classroom for a couple of subjects. He's starting to become close with another boy who is in RSP with him. And he embraces the group of kids he spends his Monday afternoons with at the occupational therapy center. In fact, as it turns our, he embraces them literally.

He's found his comfort zone, his people, his community. And, if watching N and his friend T say goodbye to each other while I talked with L yesterday was any example, they embrace him as well.

Cool.

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.