Wiggling

At the Tower of London, June 2014

Last night, we watched the Wiggles on YouTube. An entire episode. N made the dogs dance to "Fruit Salad" (yummy yummy). We did the motions to "Hot Potato." When it was over, N said, "Awww. I wish we had time for another one. But we can watch more tomorrow, right?"

N is 13. Thirteen and a half, this weekend. Going into eighth grade, next month.

I wonder, sometimes, if this is the wrong thing to do, to indulge these moments. They're frequent. They're often what we do together, when it's just the two of us. We watch Dragon Tales. We watch Curious George. We watch Blues Clues. We read Go Dog Go. (We play Go Fish, and War, and Nok Hockey, or we play frisbee in the park. It's not all passive. Just had to say that, even though it's not relevant here!)

The Wiggles is new (again; he was a huge fan as a preschooler), but it's just another Dragon Tales, just another Curious George.

Each time, I wonder: Should he realize that this is 'baby stuff'? That this is young? He doesn't seem to. Does he realize that there are some--though I'm not really among them--who would think this is inappropriately young? If I say something, if I make sure he would know not to suggest this kind of viewing in front of his peers--dear god, please not in front of his peers, the few who are still with him, most having outstripped him, many starting to peel away from him--won't I make him feel ashamed? I don't want him to feel ashamed at feeling joy. But I also don't want him to walk out in front of the bus that is middle-school social life without shouting a warning to him, either.

Not to mention the constant reminders I get from the 'experts' that I need not to hold him back, maturity-wise. He still sucks his thumb (as I did, right up to this age, so I know the comfort therein, as well as the oddness of keeping up that comfort at this age), and I fight to not make that an issue, because there are things more harmful, I believe. And yet they tell me that it will taint the way other see him, that it makes him a target for bullying and, more subtly, it makes it harder for other kids to connect to him or want to connect to him, if they see him as younger, as a baby. That I need to realize that he's 13, and needs to learn how to take care of himself. He's still not comfortable turning on or taking a shower by himself; he worries when asked to cut his own meat with a sharp knife. I tend not to even think before I do these things for him. I need to think. Especially about the shower and the knife. I need to make those things easier for him to take on by himself, to support him without carrying him.

But the Wiggles? Are they a comfort I should allow him? Or are they a dull knife that I'm handing him, making it difficult for him to get through a meal without assistance?

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Then, there's the flip side.

My son loves guns. It's a subject I try not to talk about much, because if there's anything that brings out the hidden judgment of other parents, it's boys who love guns. Still, he does. He owns every model of Nerf he can possibly get his hands on. He has marshmallow guns, rubber-band guns, water guns, cap guns. He literally dreams of an AirSoft gun and/or a BB gun. (And I squash those dreams; not at my house. Not with a kid whose impulse control is less than perfect.)

He decides which movies to watch with his dad based on whether or not the movie will have guns in it. Top Gun? It has guns in the NAME, duh. James Bond? Oh, yeah. Die Hard? EVEN BETTER. Bring it on. The more bad guys that go down--and the more spectacularly they do so--the better. There is almost nothing in this genre he won't watch, and he and his father are twins in this, loving the time together seeing movies I don't even want to hear the names of.

Keep in mind that this is the kid who got nervous last night when the Wiggles heard a growling noise and went out into the night to investigate with Wags the Dog, only to (spoiler alert) realize it was Jeff's tummy growling, a noise that was squelched when they gave him an apple to eat.

"This is making me scared," he said at first, starting to turn away from the screen.

"Phew," he said, when the mystery was solved.

But entire office buildings full of people going up in flames after a series of explosions? He's glued to the screen.

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I'm not sure where I'm going with this, except that these different sides of my boy lead to an extreme case of whiplash.

I guess I'm just trying to play all of this out. I have to let him grow up. I have to, in some cases, push him out of his comfort zone, out of the nest, even if it makes me uncomfortable.

But I also want to--have to--accept him. Celebrate who he is. I don't want him to ever feel ashamed to be N, in all his remarkable N-ness. I want him to know how spectacular he is, and to just be ever so much MORE himself. The Nerf guns are part of that, for sure. The whole lust for a feeling of control over the world around him makes sense, and if a bunch of soft darts give him that, I can deal (though I constantly, relentlessly tell him why I hate guns, never so much more than right now).

So where are the Wiggles in all this? Are they the comfort zone, the nest? Or are they part of his N-ness? Do I push him past them, or do I celebrate the part of him that still loves them?

To Wiggle, or not to Wiggle? That is the question.

Time Keeps on Slipping Slipping Slipping...

I've talked a lot about N's pragmatic language issues, and that they are especially acute when it comes to various types of measurements; he doesn't really seem to get the difference between an inch and a foot or how many of one goes into the other, for instance. But the most obvious and frequent issue involves time. Quantities of time. Tenses of time.

"Remember when we went to the store tomorrow?" he might say.

"You mean when we went to the store yesterday?"

"Oh, right," he'll reply. "Yesterday."

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Trying to find actual real examples of what I'm talking about, though, that's harder. So when I come across one, especially one that keeps getting repeated, I'm wont to write it down, so I can use it, so I can be specific when I ask people to help us figure out how to address it.

Recently, we've been listening to Wonder on audiobook. I mentioned it before, and at some point I'll likely mention it again, because it's been this wonderful (ha!) experience for both of us. It's eliciting so much conversation, and so much emotion.

It's also eliciting a perfect example of N's issues with time.

See, we listen to the book on my iPhone; the iPod function there has a 15-seconds-back function on it; you touch a little clockwise or counterclockwise arrow with the number 15 in it, and that makes the audio skip forward or backward 15 seconds. Because we only get to listen to the book a few times a week, there are long periods in between when life gets in our way, so whenever we turn it back on, I always instruct N to hit the 15-second-back once or twice.

Lately, because my son is nothing if not a creature of habit, he's beating me to the punch when I pull out my iPhone and hand it to him to get us started while I drive.

"Should I turn it back 15 minutes?" he said the other day.

"Seconds, and yes," I said.

"Right. Seconds," he replied.

Two days later:

"I'll turn it back 15 minutes."

"15 what?" I said, prompting.

"Hours?"

"Seconds."

"Oh, right. Seconds," he said, embarrassed, dismissive.

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On the way to school the other day, when we'd been late leaving the house every morning this week (I adoreADOREadore Daylight Savings, but it sure does take me some time to catch up to the mornings), I bemoaned our tardiness.

"This isn't OK," I said. "We're so late. It's already 7:50!"

"Yeah," he said. "I'll have to remind you to leave a few minutes later tomorrow."

"Later?" I said, momentarily confused, until the coin dropped. "Do you mean earlier?"

"Oh, right. Earlier," he said.

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That "oh right"? The one that comes with each of these corrections I give him? If you were sitting there, you'd know that they are not "oh, right"s. They are, rather, "isn't that what I just said?" They are, "I'll use repeat your words so you'll leave me alone." They are, "we just aren't speaking the same language."

I can see the disconnect, but I can't see how to cross that divide. I don't know where it's rooted. In language? In something deeper, some quirky biological sense that isn't, an actual inability to know the difference between 15 seconds and 15 minutes? Somewhere else?

Is it fixable? Does it need fixing? Can it be worked around? Is it the sign of some gift instead? Am I looking at it from the wrong perspective, from my time bound world, trying to tie him down?

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When N was little, he used to talk about something happening "in a couple of whiles." I loved that turn of phrase, and I still like to use it. But, really, I think that's what time is for him. Just some whiles, all piling up in one direction or another. A couple of whiles here, a couple of whiles there. It's all the same. It's life.

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.

Priorities

An email from my brother-in-law:

Last night N told me that when the time comes, he and Em will be the ones to scatter my ashes. “Unless Em has rehearsal that day. Then we’ll do it a different time.”

As you can tell, rehearsal always takes priority in our house.

The Half of It

He's working on a project for school right now. It's 9 pm on a Saturday, but let's put that aside. And although it was a project that was supposed to be almost completed at school and only 'enhanced' at home and we actually ended up doing more than 75% of it here, let's put that aside, too. Because he's just spent the last 15 minutes "decorating" the cover of the project, despite the fact that he doesn't ever DO that. And he's working on the cover by himself, which he doesn't ever do either. That's why I'm all about the putting of that other stuff aside.

But the reason I'm writing, and the reason I'm giggling, is that he just called up the stairs to let me know that I'm going to love it when I see it.

"I'm sure I will," I reply. "I always love things you do when you put so much hard work into them."

"Well, you'll also love it because it's like a rainbow, except with black and brown."

"That sounds lovely," I say, smiling to myself.

"Oh, you don't know the half of it," he responds. With exactly the right tone. I don't know where he gets these phrases, but what I really don't know is how he learns to say them with such pitch-perfect aplomb.

And it's true, besides. I don't know the half of it. I may not even know the quarter of it. Except I was right. It is lovely.

(The IEP went fine, by the way. There was the heartbreaking moment, but it was brief, and I got past it. Mostly, there were the "we're very lucky" moments, as different members of his team began to play off of one another, getting excited by the ways they could back up each others' goals. My favorite moment was when the psychologist who works with him heard about the plans the OT has to get him to access the school cafeteria's hot lunch line, which he has never once looked at, much less used. She literally squealed at one point, saying, "Ooooh, and I could..." Even the brand-new SLP, who is very possibly one of N's people from what little I've seen of him, came up with some ways to back up his social skills goals during their speech sessions. We are, indeed, very lucky. There are things that are not happening, and may never happen, which I would like to see happen...but it won't be for lack of caring or passion for my boy. Not everyone can say that.)

Still OK

This is what it's like to be the mom of a special-needs boy:

I park the car in the usual spot, which is about a block uphill from the school. This allows me to get out of the area easily after I walk him to The Stairs, rather than getting stuck in the carpool dropoff line. (My boy? Not so much into the dropoff line.) As I pull over, I notice a few kids--including a boy from N's class--walking down the hill from their homes.

"Do you mind if I just wait until M passes to open the car door, Mommy?" N asks.

And just like that. Heart in my throat. Why is he afraid to open the door as this boy passes? What is that little fucker doing to him? Is it physical? Or just name-calling?

We wait the 30 second until the boy and his friends are past, at which point N opens his door and hops out, all smiles. I'm less smiley.

"N," I say in a quiet, confidential voice as we begin to walk toward the school, a good 20 yards behind the child whose back is being stabbed by the arrows shooting from my eyes. "What does M do to you?"

He looks genuinely confused. "Do to me?"

"Why didn't you want to open the door when he was walking past? Is he threatening you? Making fun of you? Hurting you?"

"Uh, NO!" he said, with real vehemence. "I'm shy of him. I didn't want to have to say good morning, or walk in front of him or next to him. I like being behind better."

If he were a kid who understood sarcasm just a little better, he would instead have simply stuck his hand out and said, "HELLO? Have you MET me?"

Of course. This was about N, not M (who, isn't a little fucker, it turns out, and sorry about the arrows in your back, kiddo).

You'd think I would have known. You'd think.

So, in case you were wondering? School's going just fine. Everything is still OK. Once Mommy got her head out of her ass, that is.

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.

One Liner

At the circus, sno-cone cup in hand, N looks into the plastic tiger's eyes, then over at Baroy and me. "I think I'll name him Newspaper," he says.

It takes us two or three full beats before we both start howling.

It's Not Possible

It's not possible that my first baby, the one who made me a mother--who literally made me who I am today--was promoted into high school this morning. (She's in that photo, somewhere....) These kids came walking in, looking for all the world like actual young adults, as if this was real, as if they were really growing up.

I refuse to accept it. It's just not possible.

It's also not possible that my baby baby was promoted into fifth grade today, too. With comments on his report card that are as different from last year's teacher's final words (even though in many ways they were similar in content) as his first day of school was different from the entire previous year's horrible experience.

N occasionally shares answers with the entire class. His comfort level with others continued to expand this trimester to include even more students and situations. He was able to work more independently more often than in the past. ...

The growth--personal, if not physical. It's incredible. How can he be so heading-toward-grown-up already? How is that possible?

Summer is on. That, too, seems impossible. And Southern California seems to agree with me, since it keeps producing winter-like weather--clouds, drizzle, temps in the 60s.

See? Time doesn't march on. It stays still. Still, I say. Be still, my babies. Stop moving so fast. Stop moving away from me so fast.

(I'm so proud of you, both. So proud.)

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.

More N Deliciousness

It was just after Religious School, and I'd run into our rabbi outside his office; he'd stopped to chat with me. Once N's friends had all dispersed, N joined us. Somehow, the topic turned to fruit; I think N was eating a tangerine.

"What kind of fruit has its seeds on the outside?" N asked suddenly. It's a 'riddle' he likes to bring up any time the word fruit arises in conversation; he learned it in his PE class, where the teacher throws them one or two word/logic type puzzles a week.

"A strawberry," Rabbi answered promptly.

I laughed; N is used to stumping people with that one. "Ah, see? Rabbi knew, N!"

N turned to me, rolling his eyes. "Duh, Mom. He's a rabbi. He's supposed to know everything."

Rabbi literally roared with laughter. Wiping his eyes, he patted N on the head. "Hate to break it to you buddy, but I don't know everything."

N looked at him levelly, then shrugged. "But you know God's name," he said. That, clearly, settled the issue; he turned and walked away, while Rabbi and I just looked at each other and grinned.

Dear name-of-God. That kid.

Your Son: An Email Exchange With N

[Verbatim. Because if this doesn't translate on its own--and it may not, I may be the only one guffawing here--no amount of embellishment or explanation is going to help.]

From: N
To: TC
Subject: your son

ples writght me back

love
your
n

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From: TC
To: N
Subject: Re: your son

Hi, my son! ;-)

I love you.

Love,
Mommy

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From: N
To: TC
Subject: Re: your son

ok wright more complents

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From: TC
To: N
Subject: Re: your son

I'm not sure what "complents" are. Do you mean compliments? Do you want me to tell you how much I love you? Or how good you are at golf? And how much I enjoy reading stories you write?

Love,
Mommy

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From: N
To: TC
Subject: Re: your son

to many questins

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.

He's Got Skills, All Right

There's ugly stuff going on at our tiny little synagogue. Political, maddening, saddening stuff. Where it will end, no one knows. I'm not sure there's a way back, but I'm not calling the game over quite yet. Where there's faith, there's hope. Or something like that.

But all that's too much for me right now. Too hard, and too long, and too complex, and not really all that much my story to tell. I'm pretty much peripheral to it, though it's been at the center of my thoughts for weeks now.

Which is why, instead, I want to tell you a light little shul story. One that focuses on our temple family, and not on its dysfunction. One that involved laughter to the point of tears, instead of just tears.

This weekend was the bat mitzvah of one of Em's closest friends, the daughter of one of my closest friends there. That meant that all of the key players in my part of our temple's little world were at services on Friday night. And as we are wont to do when we're all together, there was a lot of musical pews going on. Em was in the front row with her posse, all of them cheering on their friend as she led parts of the service. Baroy settled himself a few rows back. I flitted a bit--first next to Baroy, then to quickly whisper to the mother of the bat mitzvah, then to another friend who'd recently arrived. N has never sat in one place for more than 30 seconds during any service. Never. So he was doing his thing, too.

At one point, two of my mom-friends, C and F, were sitting near the back, and N plopped himself down between the two of them. C started idly rubbing his back. After a moment or two, N looked over at F and said, "This feels sooooo good. But you know what would feel better? Two hands!" And then just smiled brightly at F.

C was telling me this story later that evening, and I stopped her at this point. "So how long did it take F to start rubbing his back too?" I asked.

"Twelve milliseconds," she replied. And then started laughing, the kind of laughter that turns into painful gulps of air, tears streaming down your face.

"The thing is," she said, "at that moment, I just sort of flash forwarded about ten years..." And that was all she could get out, until she'd gained enough control to choke out, "I think it's possible that he doesn't really need those social skills therapies, you know? I think it's possible that he's going to be more than just fine."

A Big Bear Miracle

We've been coming up to Big Bear every year for the past nine years.

Each year, N has been terrified of sledding down the hill across from the house we stay in.

Most years, he has refused to even get on a sled once the entire weekend.

Every now and again, he's agreed to go on with Baroy. Once. Only.

Last year, just days before we came up here, he had surgery for an undescended testicle. Obviously, he wasn't allowed to sled. In classic contrary kid fashion, he spent the entire time complaining about the restriction. We just rolled our eyes.

This year, freed from the threat of popped stitches and uncontrolled bleeding, he insisted he was planning to spend the entire weekend making up for what he missed last year. Again, we rolled our eyes. We knew better.

We were so very, very wrong.

Neither crash, nor 62^nd crash, nor sled washed out to sea (OK, lake...sticklers) could stop this child.

(Yes, that is specifically why we couldn't let him sled last year. Can you imagine?)

Somehow or other, they managed to get that sled back. I'm not sure i want to know.

 

He was the first over the father-built moguls, the first up the hill after each run, and the last in the house after each excursion out. 

His sister had a blast, too. But that's par for her course.

But for him? For us? It was a Big Bear Miracle.

Hand Holding

On Christmas Eve Eve (aka December 23), we were on our way to the home of our friends, where we spend Christmas every year, helping them celebrate their holiday as they often help us celebrate ours. I would make latkes and applesauce, and chicken soup with matzo balls; my friend would make eggplant parmesan with homemade marinara sauce, and pasta with a homemade meat sauce. We would feast. We did feast.

But before that, it was me and N and our dog Snug in the car, battling traffic while Baroy and Em were at a soccer meeting for her All-Stars team, readying themselves to join us later. I was transitioning from one freeway to another when...BAM. I was, it would later turn out, the third car in a three-car collision. I should say right out: Nobody was hurt, and my car sustained the least damage of them all. It was a blip, more than anything. Likely to be an expensive blip, but just a blip nonethess.

And yet, I still can't talk about the accident without shaking; just typing this is making my legs tremble, though I actually am not freaked out about it any more in my conscious mind. It's odd, and I don't know where it's coming from. But this blog post isn't about me. It's about N, who at first seemed more than fine about the whole thing--there was a POLICEMAN involved, after all, one who was on his way to dinner when he saw the three cars pulled over to the side of the road and came to our aid. There is nothing more exciting than a policeman in N's world.

And yet, I noticed--as we discussed it over dinner with our friends, and then with another friend when she arrived the following morning--that N stayed uncharacteristically quiet. When I asked him about it, he just hid under a couch pillow. He doesn't like to talk about hard stuff, my boy. And so I handed him this laptop, and asked him to write about it. The following, in all its misspelled and oddly worded glory, is his story.

(The only info you need is that the bumper was, originally, still attached, hanging by almost a thread, so the policeman pulled it off for us; and that it had a "Student of the Month" sticker on it, and the "Stu" is no longer there, so a friend pointed out to us that now it ironically reads "dent of the Month." Which, yes, it is. At least, it's the dent of OUR month.)

Oh, and the other thing you should know? The second-to-last line just about killed me.

My accident story

I felt scared and sad when the accident happened. My mom's car got hit and I never been in a car accident. Happy because I saw a police car yesterday and he pulled off my mom's bumper and now the sticker saids dent of the month. I thouht that I was going to get hrut and go to the Hositipl and have to do sugry on me with out my mom holding my hand. That is my story.  

His Beautiful Mind?

[Walking to school.]

Mom, you forgot to put the Vaseline on my lips, and they were really hurting last night.

Did you tell me?

No.

Well, then how was I supposed to know. Do I live inside your head?

[Laughs.] No, but that would be really cool if you did.

[We have a conversation about why that might or might not be cool, having me be able to control him from inside his head. Then...]

Does anyone have someone that lives inside their head?

Well, that's a difficult question to answer, because there are some people who kind of feel like there are people in their heads in one way...in a way where they know those people aren't real. Like, writers can sometimes hear the characters speaking. I can do that sometimes when I'm writing. It helps me know what someone would or should say in a story. I may 'hear' someone talking to me, but I know that they're not real. They're not talking to me the way you're talking to me. And I can make them stop any time I want.

What about other people?

Well, there are other people who sometimes hear voices or think that there are people inside their heads who are telling them what to do, who they can't stop, and they can't do anything about. But most of the rest of the people in the world think that people like that might have something wrong in their brain, something that makes it difficult for them to stop those voices or realize they're not real. People think of that as a kind of mental illness.

But what is that called?

That's called schizophrenia.

And what do they do for that?

There are medications, and doctors will give those people different medications until the people say they can't hear the voices any more.

[No comment; he looks unhappy, agitated, waves his hand at his head.]

I don't want to talk about this anymore.

[Because by this time we'd gotten to the school and were surrounded by a large group of kids, I waited until we got to the top of the stairs to say anything more. Then I turned him around to face me, and got close to him.]

I'm wondering if the reason you look so upset about this is because of your imaginary friends.

[He nods slightly.]

Your imaginary friends are imaginary. You don't think that they're real. That's one of the reasons nobody's worried about your imaginary friends. Another reason nobody's worried about your imaginary friends is because, while sometimes they talk to you a lot, whenever you need to, you can make them stop. And they're not telling you to do bad things. And if they did, you'd still have a choice about whether you do them or not. So that's not what I was talking about. OK?

[Another slight nod.]

I'm door monitor today for my class, Mom. Bye!

[Did he buy what I was selling? I hope so. I can't swear, though.]

[And also? Really, Monday Morning? Really? THIS is what you hit me with, out of nowhere, from a kid with whom normal conversations go no deeper than how many police cars he saw that afternoon? You're mean, Monday Morning. Cruel. I don't like you very much today.]

Letter to the Soldiers

(Taken directly from an email I sent my friend S this morning. Sometimes these entries just write themselves, don't they?)


We had Mitzvah Day at the temple yesterday; one of the mitzvot--in this case, it means good deeds--we do is create care packages for soldiers overseas.


The kids write holiday cards to the soldiers to include in the packages; lots of "we love you" and "come home soon" and hearts and flowers ... 


... except for N's, which read, "Dear Soldier, Hope you win the war. Beet the bad guys with your guns. Love, N."


The woman in charge of that table and I laughed until we cried. Well, after we fixed the handwriting so it didn't look so much like it said "Beet the bad GAYS with your guns."

The Difference a Year Makes

[Part II of Beginnings is coming, I promise. It just needs time. It's a both more- and less-heartwarming story than Part I, and it's taking time and emotional energy, neither of which I have much of right now. Instead, let me tell you about my afternoon, via my Twitter feed...]

tinycoconut

  

The difference a year makes: Got note from RSP teacher asking if it wd help if they sent home extra sci/soc studies books for N to keep home


tinycoconut

  

W/in two hrs, emails back and forth between RSP, classroom tchr, principal, and we'll have books in hand on Monday.


tinycoconut

  

Not my idea; not something I asked for; creative, proactive problem-solving on school's part. I'm stunned...and grateful.


tinycoconut

  

And, yes, I effusively thanked all parties. Hard to believe it's the same UNIVERSE, much less the same school, though.