Sunday, April 13, 2014


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?"


"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."

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.



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

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.

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?

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


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.

Sunday, March 2, 2014


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.

Thursday, February 27, 2014

So Much Better

"Mom," N called this morning from the bottom of the stairs, where our dining table is, up to my room, where I was getting dressed, "why is it that I'm getting so much better grades in middle school than I was in NameofElementarySchool?"

"Well," I said, wanting to address important questions in the moment, and yet reallyREALLY not wanting to have an 'important' conversation screaming from room to room, "I think it's because your teachers this year are so much better at teaching YOU, instead of just being good at teaching everyone."

He started to harrumph a little, because he loved several of his teachers from grade school, and rightfully doesn't like to hear anything that sounds negative about them. But it's hard to explain yourself while trying to put on a bra, so I mostly stumbled/screamed (to be heard)/muttered (so as not to be heard too well since what I was saying made no sense) through a vague explanation of how there are fewer kids in his class now, and the teachers are really great at teaching, and and and…

"But I was in RSP in NameofElementarySchool," he countered.

"Yes, but…" I really could not imagine how I was going to talk to him about the difference between the one-on-one remediation he was getting before, and how we thought that was the best thing for him, but now we're seeing that being taught at grade level, as part of a class, with his accommodations addressed right alongside the teaching rather than during a second pull-out session, really works better for him.

Luckily, he'd moved on.

"Will I be in special ed in eighth grade, too?"

Scrrrreeeeeeeeeeech. I came to a dead stop. But not for the reasons you may be thinking. Not because I think special ed is a bad thing, or that I want him out. Oh, no. To the contrary.

"I think so, kiddo," I said. "Right now, that's what Mr. T and the rest of your teachers think will work best for you. But if you don't agree, I'd love to hear about it."

No response. He took his plate to the sink and began talking to Baroy about somethingorother about golf or computers or Idon'tknowwhat.

But I stood there, despite running perpetually behind in the mornings, for at least 30 seconds, brow furrowed, wondering.

Because, you see, he'd said "special ed."

He's never said "special ed."

He used to get pulled out for RSP, and it was called that, so he knows that name, but he just thought of it as a place he went to get away from the chaos of the gen ed classroom. Where the ladies who fawned over him were. Where the kids who didn't bully him hung out. He always saw it as a good thing, but not…as special ed. So I don't know where that came from. Possibly, likely, from overhearing me talk with Baroy. Or maybe in school, hearing teachers talk to one another. Or maybe from one of his classmates. Or maybe from some kids in the non-sped classes, though deargodIhopenot.

He didn't say anything pejorative. It was just…not a word, and not a concept, that I'd ever thought he'd internalized. More to the point, he's been actively resistant to any conversation that suggests he's "special." So to hear this…to realize he DOES know what kind of program he's in…is interesting to me. More interesting would be to know what he THINKS about that.

And so when we got into the car to head over to the school (a two-minute drive from our house, mind you…three with local traffic), I tried to ask him a little more about it. And he looked out the window and changed the subject to Back to School night tonight, and how his friend C from Religious School, who's in sixth grade, might come, and could he show her his classrooms, and next year when we see them on the first day of school could we all walk around together? And...

Ah, there you go. Back to being N. Who is, really and truly, doing so much better this year than any before, in so many ways. Special ed for the win.

Friday, February 14, 2014

The Valentine Pushover

Cards from my funny, funny, Ravens-obsessed Valentine.
At about 8:45 last night, N came into the kitchen, breathless.

"Is the store closed?"

"What store?"

"The one where I can buy Jolly Ranchers."

"That would be the supermarket. It doesn't close until midnight or later."

"I really want to buy Jolly Ranchers for my friends. To give out to all my friends tomorrow, at school. Is it too late?"

If you're a special needs parent, you know what happened next. Even though it was 15 minutes before he should be getting into pjs and ready for bed, even though this kind of last-minute request from Em would have made me scoff and dismiss her with a "you need to plan better," even though I was dead on my feet from a long-ass week full of deadlines and stress and work and more stress…I picked up my bag (no coat needed, even well after dark, in LA this week), put on my flip flops, and told him to get his wallet. He skipped off to this room, clearly relieved, very excited, and chattered all the way to the store about who he wanted to give how many Jolly Ranchers too (his art and English teachers are in for a treat!), then debated the various-sized bags. ("I don't know if there's enough in here. I have a lot of people to give them to." Swoon.)

There are times when charges are leveled at me--sometimes by others, often by myself--that I am too easy on N, too willing to roll over to give him what he wants, too coddling; that I don't let him learn the hard lessons, or that I favor him over Em. But, really, I know that's not true. I'm a subscriber to the parenting dictum of giving a kid what he or she needs, not just what the other kid gets. N *needs* to be able to do nice things for other people when he thinks of them, and if heading to the supermarket late the night before Valentine's Day is needed to make that happen for him, so be it. Em? Does not. She has 16 billion friends (almost literally) and has the whole give-and-take of relationship building down pat. So had she asked me to drop everything just minutes before bedtime, I'd have said no, and considered it a lesson in planning ahead. Because that would have been what SHE needed.

And besides, I did make him pay for the Jolly Ranchers. And then he made a sad face when I wouldn't let him pay for the chocolate milk we got him for his lunches at the same time. Because he loves being generous, buying things for other people. He just doesn't get a lot of chance to do it, and doesn't always think of it on his own. When he does? Well, I'm going to roll right over. I'm that kind of mom, I guess. And proud of it.