Tuesday, July 22, 2014

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.

Friday, July 11, 2014

Included

N skipping a stone across a small river in the Yorkshire Dales during our recent trip to England and Scotland.
On Monday, I got a call from N's middle school. They wanted to tell me about a program he's eligible for, one where he would be one of two or three special ed kids in a regular gen ed classroom (with a 'consulting' special ed teacher and a classroom aide) for one of the four academic periods he was in a special ed classroom for last year.

It's optional, they said. But then they said this: We're doing this because this is the model they use at the high school, and we need to move toward it.

Shit. That's what I was afraid of.

Seventh grade was exceptional for my kid. After seven years (K-6) in a general education classroom with varying amounts of support and pullouts, he was over the whole inclusion thing. Last year, he was in classes of 12 (with one class of 16) with a trained sped teacher in each one, plus one or more aides. He thrived. It wasn't perfect, but he thrived. He still got lower-than-I-think-he's-capable-of grades (Bs and Cs, mostly, with an A in math the first semester), but had certain test scores and--more importantly--an ability to recall what he was learning and to work independently that were remarkable.

After thinking the program over a bit and talking with Baroy and N, I wrote the following email to the school. I'm proud of it, mostly because I didn't just go gentle into that inclusive night…though that's ultimately where we wound up. I said what I needed to say. I'd like to think that they not only read it, but that they forwarded it to the sped coordinator for the district. Maybe *I* will forward it to her.

The email started with a paragraph about why we weren't giving them an answer when I said we would, which was because N said he wanted to talk to his favorite teacher, the one whose class he won't be in if we do this program (but who will be the consulting teacher in that case). I said that I was actually thrilled about that, because, "if there's anything that's even more important to my husband and I than our son's education, it's giving him the ability to speak up and advocate for himself." And then I wrote this:
All of that said, I do want to go on record as saying that I think that the consult model is a terrible direction to go in--or, rather, to have as the only option for a kid like N--and even moreso at the high school level. Inclusion/a chance to be with his "peers" may be a much-ballyhooed concept, but in reality, the one thing I've learned these past four or five years is that my son's true peers are the kids who are like him, the kids he can relate to--i.e., the kids in his RSP classes. What the district is talking about when they say peers is N's grade-mates. Nothing more. 
I attribute the success N had in seventh grade--or, I should say, successES--entirely to his feeling safe and supported and accepted for who he is, rather than mocked and bullied and physically pushed around. The RSP program, to me, is the best kind of inclusion; that sense of safety and support are what we're after for N, and that is what we got last year. I'm willing to give this new model a try in eighth grade, mostly so that I can determine if OurHighSchool will be an appropriate placement for Noah in the end, something I hadn't realized I might have to worry about. But having done gen ed from kindergarten through sixth grade with Noah, I have to say that I'm highly skeptical about his ability to learn in a general education environment, with all the social and attentional demands it places on him, and the enormous developmental gap between him and the other children in the class. 
I realize that none of this larger-issue stuff is in your hands, nor is it your decision. But I wouldn't have felt right not stating it for the record. Your RSP program--and its teachers--are wonderful. I hope this new program will be able to measure up.
I did get a response, in case you're wondering, thanking me for my "candidness and honesty." And the assistant principal I sent the note to made a point of stopping N on the playground at snack that day and answering all his questions; he then decided he didn't need to talk to Mr. T, and gave me the go-ahead to sign him up for the program.

Really, I'm doing this for the reason stated above: I want to be sure that this is something that CAN work for N. He desperately wants to go to OurHighSchool, where there will be kids he's known all his life, plus several of Em's friends who are a year behind her, who've promised to watch out for him. But if this is the best they can do for special ed--shoving him in a general education classroom with people making sure his accommodations are being met…but not necessarily making sure he's TAUGHT IN A WAY THAT ACTUALLY REACHES HIM--then I don't know whether that's going to happen.

We'll see. As I said, I'm skeptical.

And, also, frustrated. There must be people for whom inclusion is important, for whom inclusion works. But ohdeargod, not my kid. I want him included, of course. I want him included in the learning that goes on at school. I want him included in the opportunities for growth and development. Last year? He was, for the first time in a long time. Their plan? Is more likely to move those things out of his reach than to make them ever more possible. But I'm keeping my mind open. Because, hey. Maybe everything is different now. Maybe the other little shits his peers won't pull his chair out from under him, or refuse to take a pen from him because it has "N cooties." Maybe they won't taunt him when he exhibits behaviors that are, let's say, young for a boy his age. Maybe they'll try to connect with him rather than ignoring him when they're not mocking him. And, more to the point, maybe he'll now be able to listen to a lesson in a room of 30+ kids, rather than spending all the time trying not to be seen, worrying that he'll be called on, trying to block out the shuffling and snuffling noises, trying to figure out what page they're on, find his pencil, put the right heading on his paper, keep up. Maybe he won't be completely shut down by trying to control all the input and the stress. Maybe some small amount of information will leak in along with all the rest of that stuff. Maybe.

Did I mention that I'm skeptical? And looking for a good special ed advocate, in case I need to find a different high school for him in the next year? Because I am. Though I'd hoped I wouldn't have to.

Wednesday, April 30, 2014

Social Calculations

There was to be a group photo of the five kids graduating in a couple of weeks from our temple's religious school. There was some concern about whether N would agree to be in the photo; there was some concern over how I'd feel if he refused and they took them without him. (My temple friends are smart and empathetic.) I noted that I thought the chaos of dismissal time would be a bit of a problem for him; too much going on, definite overload time; I also said that having me there might help. So my friend who was taking the photo came a little early and got me from the Starbucks where I work while he's in class, and we went early to the shul.

When we got there, I went to the ladies' room while she and the others gathered the kids from class about 15 minutes before dismissal. By the time I'd come out, N was already among his friends, posing for the photos. When the moms suggested the kids sit boy-girl-boy-girl-boy, N immediately volunteered to be the boy in the middle of the two girls, while the other two held back. When we told them to stand on a bench and jump off as a group, he was the first one up on the bench, legs bent, ready to go.

To say I was surprised would be an understatement, though a mild one; he is very very comfortable at religious school, among the not-even-a-dozen kids in his age cohort. (See: graduating class of five.) Still, photos are an issue for him, second only to speaking in front of a group, which is second only to reading out loud to almost anyone. So, yes, I was surprised and pleased.

Fast forward to last night, when I was showing him some of the photos on Facebook. He rolled his eyes at them, pretending to be embarrassed, but he was really pleased. Then he said, "You know what's great about graduating from religious school? You get pulled out of class early to take photos!"

Aaaaaand explanation received. It wasn't the lack of chaos or the fact that I was there. It was, rather, the fact that early dismissal trumps general hatred of being the center of attention. Good to know.

[I'd put a photo here, but I didn't manage to get one with faces obscured. My apologies. They really are super cute, though.]

Sunday, April 13, 2014

Safety

When I went to get N from his religious school class today, two girls from his class came running up to me.

"If it's OK with T's mom, can N come with us for a playdate this afternoon?" C asked.

N was looking at me intently.

"Sure," I said, only to feel N start slightly. Clearly, this was not what he'd thought I would say.

As the girls ran off, I looked at him. "You don't want to go?"

"I don't know," he said, immediately whiny, which immediately makes me annoyed. "I might be scared."

I took a deep breath. T's house is somewhere N has never been before, and I know that new environments are tough for him.

I tried reasoning. "You know how, when we finished reading Wonder, we talked about how Auggie's mom made him go to school even though he was scared, and you said that that was just like you, and you usually are happy I made you do something?"

"But…"

"I think you need to do this, honey."

"But…" He took a shaky breath. "I just don't feel safe about this. I want you to go with me."

And there he had me. Because we've talked, before, about how he has to trust his instincts, and that while he should usually try things he feels scared about, he should NEVER do something he feels isn't right, or isn't safe. And that I will never make him do something that he thinks isn't safe.

The question, of course, is whether he really didn't feel safe, or whether he was just so scared of going in a strange car to a strange house (although with people he knows perfectly well, including the parents) that he pulled out the one phrase he knew would trump any plans I might have had to 'force' him to try something new.

In case it's the former, I dropped the subject, and told the mom (and the girls) that he was too nervous about going somewhere new; the mom suggested I bring him by a little later.

So now we're home, and I'm making him wait a bit, but then I'll probably drive him over there for a while, let him get used to the house while I'm there to keep him 'safe,' and see how that goes. Even though I have a majillion things to do for Passover tomorrow, and even though I sort of want to scream.

I can't decide if he just played that well, or if he truly advocated for himself well. I guess, either way, I sorta gotta hand it to him. As I find myself doing more often than not. He's smart, that kid. Smart and safe.

Friday, March 14, 2014

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.

Friday, March 7, 2014

Hardness

Parenting is hard.

My kid, the one to whom the word 'hard' is not usually applied, is having a hard time. She is 16. 16 is hard. What she's going through are her own things, and none of them are tragic, and none of them are horrendous, and none of them anything close to the sort of shit that too many other 16-year-olds (or 26-year-olds, or 56-year-olds) deal with daily. If I told you--if I thought it was appropriate to tell you--you'd scoff at me. Some of you already have. But for her, it's hard. She's having a hard time.

And that. That kills me. Which is why parenting is hard. Uniquely hard, even. Because I can't fix it. I want to. I can't. Not just shouldn't (which, yeah, shouldn't, because this person is getting closer and closer to ready-to-launch), but can't. I can't fix it, but everything in me wants to believe I can help. Or that I can try to help.

Did I mention parenting is hard? Because here's what makes it even harder. That trying to help part. That makes it even harder. Because I can feel it, the ways in which my trying isn't helping, and maybe is even hurting. I can feel myself flailing. I can see the boundaries, the places where I should stop. And then I don't. I want to, I want to say, "I trust you. You don't need to tell me anything or do anything or say anything." I want to say, "This really isn't such a big deal. It's OK." And I do. But then I think about some article or another, about a tragic ending for some child or another in which a parent inevitably says, "I never thought it would be my kid," and says, "If only I had gotten more involved," and suddenly there I am, asking a question that implies she DOES have to do or say something, or lay down a law that implies it really IS a big deal, or generally imply that I don't approve…of her choices, of her. I end a hug with a lecture. I go back into a room where I'm probably not wanted. I can't shut the fuck up, no matter how much I tell myself to do so.

I approve. I adore her. I just want to help. I don't want to destroy the incredible person she is, but I also don't want to be quoted in a newspaper article or on my blog here saying, "If only I had gotten more involved." I don't want to have to live with having ignored some kind of warning sign. I also don't want to have to live with having crushed my kid's sense of self or her joy or her passion.

And all this from 'just a hard time,' and not from tragic or horrendous or the shit that too many other 16-year-olds deal with daily.

Parenting is hard. I'm not sure I'm up to it. Actually, today, I'm sure I'm not.

Tuesday, March 4, 2014

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.