Saturday, August 24, 2013

Feelings: A Rabbit Hole of a Blog Post

Yesterday, Jess at A Diary of a Mom wrote a post called Trust, in which she talked about a post called Got Milk at Autisticook's blog. (See why I called this a rabbit hole of a blog post? If you're like me, you'll start following those links and I'll never see you again. It's OK; they're both amazing writers. So bye! See you later!)

For those of you who are still here or found your way back: Both posts touched me deeply. Jess's bologna story at the end of hers reminded me of something that happened just the other day with N (who is in MIDDLE SCHOOL now, you MIDDLE SCHOOL). I had meant to write it as a blog post here (as I've meant to do with at least one story a week since, oh, forever) but instead I left it as a comment on Jess's post.

Still, I think it's an important story for me to own here on my own blog, because it is, once again, about how my son teaches me more than I could ever possibly teach him. And while I want to kick myself for being so slow and/or so off so much of the time when dealing with him, I also want to give myself a pat on the back for at least being willing to be corrected and taught.

The other day, my 12-year-old ASD son came home from middle school and told me a story about a conversation with a boy in his class during school picture time, who had told him that he looked nice in his picture. N, who does not do well with even positive attention given directly, apparently told the boy to please stop saying that, and the boy, no doubt confused, told N that he was being “kind of a jerk.” 
In telling me the story, N looked at me indignant and said, “I feel like he was being a bully to me.” 
I tried to turn it into a social-skills lesson, pointing out that the boy probably felt attacked for giving a compliment, which is generally a GOOD thing, not a BAD thing. But N was having none of it; he kept insisting that it “felt like he was being a bully to me.” 
Note the exact wording of the quote. At the time, I was trying to press home my point, and ignoring the word “felt” for the word “bully,” trying to get him to realize he can’t go around accusing people of bullying him when they really are not. (He had gone to his teacher to complain about the boy, so that was a legitimate point for me to make; I felt badly for that kid, who has special needs of his own, and who had done something NICE for crying out loud and now was going to be put in a position of being talked to by the teacher? Sigh…) 
ANYWAY: Eventually, I just said, “All I can tell you is that that boy was NOT being a bully to you.” And N, angry now, started stomping to his room, only to turn around and say, “It FELT like he was. You’re not in my body, and you don’t know what it FEELS like.” 
And with that, I shut the hell up. Because YES. And because that was probably the first time he’d ever said something like that to me. And it was totally amazing. An amazingness that stuck with me, despite my also feeling like a complete idiot.
Remind me to tell you about this photo one day, OK? Because, OMG. Talk about teaching. Talk about grace under pressure. Talk about my amazing boy.

Sunday, April 21, 2013

Social Contracts

I'm sitting in my living room. My next-door neighbor is in his driveway, talking to his wife on the phone. They're bickering a little, over what to have for dinner. He sounds vaguely annoyed, and abruptly stops the conversation by saying, "Listen, I gotta go. Billy's gonna kill himself on his bike." Presumably, his wife calls bullshit, because he says, "No, really. He's trying some kind of stupid trick. I gotta go."

As he hangs up, I hear Billy say, "Well THAT was a total lie. I'm not even on my bike."

"Yeah, well," his dad says. "I can tell you were THINKING about doing something stupid." And they both laugh.

I'm laughing myself, though quietly, since they would obviously be able to hear me as well as I can hear them. I have half a mind to get up, go onto the porch, look at the dad with mock censure, and say, "Tsk, tsk, Frank. Lying to Lily. I may have to tell on you."

But I don't. Because there are rules around living in such close proximity to your neighbors, right? And one of them is that you don't talk about what you overhear due to that close proximity. You don't remind them that they have almost no real privacy, because then they'll feel like they always have to watch what they say--well, at least for a short while, until the embarrassment fades a bit.

Still, they don't have privacy. Nor do Baroy and I, when we have dinner out on our back patio and chat and laugh and gossip. Or when Em pulls back the curtains in her room, which is right next to the house on the other side of us. But we pretend we do. And we all silently agree not to use the information we gather--not to rib each other about the arguments we've overheard, not to comment on the new floor lamp we noticed in a living room we've never stood inside or the ankle-deep carpet of clothes strewn across a teenager's floor.

But we've heard, and we've seen, and we know. It's all just pretend, our privacy.

And I'm perfectly happy to keep it that way. As long as I can write about it in my blog.

An aside: N's friend B is over again today, and I have just one thing to say: The sound of boys giggling...really possibly the sweetest sound on earth. I dare you to listen and not to smile. It's absolutely impossible.

Monday, April 8, 2013

The Dog Warmed His Heart

N at the Mother-Son Dance last Friday night. Which has nothing to do with this post; I just love the pose. Also, it's possible that I cried when they played Donna Summer's Last Dance at the end of the night, and I realized that it really was our last dance in that auditorium, since N graduates in June. OK, fine. It's possible I sobbed. Shush.
I'm all stopped up these days, blogwise. Trying to say what I want to say, tell the stories I want to tell, all the while keeping up with the kids, and my job, and the house, and my's too much.

So this entry almost didn't get written. And even written, it's not what I wanted it to be. But it's here. And the reason it's here is to tell those of you who are listening that writing this stuff matters. It makes a difference. You may never know where, and you may never know how, but it does.

In this case, today, when a little miracle occurred, it was Jess's writing that made the difference, that mattered. Specifically, this post, from well over a year ago, which she linked to on her Facebook page yesterday, about how our kids shouldn't be made to feel "wrong" all the time, pushed to do what's expected by and acceptable to the rest of the world.

It was also Shannon, and Jenny, and Jean, and Mir, and probably a dozen other bloggers, some of whom are no longer writing, alas, but all of whose voices ring in my head and my heart, telling me to meet N where he is (rather than where I might want him to be), to recognize that behavior is communication, and to look at him, to listen to him. Carefully. With an open mind and an even more open heart.

Yesterday, N had a boy over from his school; a kid from the grade below his, the first "school friend" playdate he's had want to say five years. It may only be four. But something like that. (How it came to be is partly a story of how teachers really can make a difference in kids' lives, but I'll have to save that for another day.) When the boy's mom came to pick him up, both kids asked if they could play again today, and N was invited over to the boy's house. That is definitely something that hasn't happened in five years. Maybe more.

Later, N started telling me about how he thought maybe one playdate in a weekend was enough; he would see B in school next week, and that was fine. He was fiddling a lot; not looking at me

"You're nervous about going to B's house, aren't you," I said.

"You know I don't like to go places without you," he said.

"That's not true. But it is true that you don't like to go new places without me," I replied.

I was seconds, then, from launching into a semi-lecture about how he's in sixth grade, and he needs to stretch himself, needs to try new things; how people expect him to reciprocate visits and if he wants to have friends, he needs to learn how to be a friend, and friends don't... And that was when I heard Jess--and Shannon and Jenny and Jean and Mir and you--chiding me. This is how he feels; this is where he is; this is WHO he is. Don't make him feel wrong.

"I have an idea," I said. "How about if we ask if I can stay at B's house with you for a little while tomorrow? I'll hang out with his mom a bit if she has time to do that, and then when I'm ready to leave, I'll let you know, and if you're comfortable, you can stay, but if you're not, you can just leave with me. What do you think?"

"I won't want to stay without you."

"That's fine, if that's how it turns out. Better than not getting to play with B at all, right?"

And so we had a plan. I should note that it was a big deal...for me. I don't know this mom; I met her for the first time when she dropped B off yesterday. Asking her to let me hang out with her? So that my 12-year-old wouldn't be scared? That hits several of my own personal discomfort buttons; what if she judged me? Him? What if she didn't understand? But I resolved to do it; to be up front, to tell her why I needed to do this without making excuses. And if it wasn't convenient? That would be fine; we would just make a plan for another time.

There were several little twists that almost derailed it today, including the part where B announced on the phone that another friend of his--someone N doesn't know and who doesn't go to their school--would be joining their playdate. And then there was the point in their phone conversation when B said that since we didn't know where he lives, maybe he and his mom could come pick N up. (N's response: "Uh, dude. I really don't want that to happen." Heh.) And his mom wasn't around for me to check with beforehand re my hanging out for a while. But eventually, after a couple of pep talks, we made it over there...only to be greeted by B's very sweet, very affectionate, but very physical dog at the door. Who sat herself at N's feet and nudged him and licked him and jumped up on him, then sat back down at his feet and stared up into his eyes.

And that, according to N, is when everything changed. Later, when I told him how proud I was about all he had accomplished that day, he said, "It was the dog. The dog warmed my heart."

What followed is a little convoluted, but in essence: We ended up hanging out for less than 10 minutes at first (B's mom was the shower, so I didn't even get to talk with her at first), then driving back home to get N's Nerf gun so that the boys could have a "battle." By the time we got back to B's house, maybe 15 minutes later, it was no longer a strange place to N, but somewhere he'd been before, and he told me I could leave for a little while. There's a TJ's right nearby, so B's mom and I talked, and I suggested I go there, do some shopping, then check in with N to see if he was ready to go home; when the time came, about half an hour later, he was most definitely not ready to go home, so we discussed a pickup time and he dismissed me with a wave. When that pickup time came, he was STILL not ready to go home, so I sat in the living room with the mom and the three boys and watched as they all played Mario Somethingorother for about half an hour. It was only with promises of a repeat playdate very very soon that I was finally able to drag him out of there. Out of a house he'd never been to before, with a mother he'd never met before, and after playing with a kid he'd never met before.

If that's not miraculous, I don't know what is. Ultimately, N (and that sweet dog) did the hard work, but we--you and I--put the supports in place that let him feel safe enough to give it a go. And so I need to thank you; all of you. For the support and the advice and the girlfriend-to-girlfriend talking-to you didn't even know you'd given me. It means more to me, and to N, than you could possibly know.

Sunday, February 24, 2013

Coming Out as Me

This year, I made a rather unusual New Year's resolution. I resolved to be myself. Maybe that's overstating. Really what I resolved to do was to stop fighting myself in those areas where fighting myself is a losing battle.

I did not make a resolution to lose weight (though I'm certainly giving it a shot). Not to read X number of books. Not to exercise more. Not to stop procrastinating at work until I drive myself and various of my coworkers insane. (Sorry 'bout that, coworkers.)

I made a resolution to let myself be me, even when that's not really a comfortable thing for everyone around me.

It'll make more sense, maybe, if I explain a little about where my head has been a lot for the past, oh, six months or more. It's been thinking about the best ways to advocate for N as he moves toward middle school. (It's a hard one: Middle school, to me, marks the beginning of the "it's not so cute to be quirky" part of life. It's not-so-coincidentally also the time when six times as many kids will be in N's grade, meaning 5X or more kids who have never met N, don't know him and how he ticks, and don't have any protective instincts towards him. I do not heart the idea of middle school for this child. At all.)

I've also been thinking back to my own middle school and high school experiences, which I was able to navigate somewhat eerily without major incident, considering that I had some quirks of my own...including a tendency to still suck my thumb (in eighth grade. in class. HOW did I survive?) and to chew on ballpoint pens until they exploded all over me.

Somewhere along the way, I read some of Stimey's posts about her recent Asperger's diagnosis. (Someday, when I'm a better writer, I'll be able to put into words just how amazing it is to have so many people in my life who have had such a significant impact on how I think, even if I don't really 'know' them in the usual senses of that word. I don't even want to think about the kinds of mistakes I'd be making every day if I didn't have the enormous special-needs community to wander about in. It's like sipping from a never-abating fountain of wisdom. Sometimes, I feel like I'm drowning in choices and possibilities, but oh, how much better than drowning in fear and uncertainty.)

Now, I don't think I'm an Aspie. But I do think that I'm diagnosable with...I don't know; maybe not with something on the spectrum, but with sensory integration issues that in many ways mimic at least some of the characteristics of ASD. When I was a teenager, back when all I knew of autism was Rain Man, I used to not-completely-jokingly joke that I had a subclinical form of autism (like I said, 'spectrum' wasn't even close to being in my vocabulary) because I had always, for as long as I could remember, not only sucked my thumb but rocked back and forth to soothe myself. I did it so violently in first grade when I needed to stand and read or recite that my teacher would put her hands on my shoulders to root me in place. (At which point I would lose my place, unable to think about anything except needing to rock.) I did it in high school during a public speaking course I took. When I got my first magazine job, my boss (a spectrummy guy if ever I met one) and I used to rock in unison when we talked; we worked on the 31st floor of a building and our colleagues used to joke that if we didn't cut it out, we'd start the whole building swaying.

Add that to the thumb sucking, and the pen chewing, and a nail biting habit that frequently has me bleeding from my fingertips, and an inability to wear socks because they 'squish' my feet and I can't concentrate, and any of a hundred other similar habits...and you've got something. Something that, had I put my finger on it before my 49th year, might have made it easier for me to get through life. Something that, as I near 50, or maybe just as I spend more time trying to make the world fit my son a little better, rather than forcing him to do all the changing to fit the world, makes me wonder whether I really have to keep trying so hard to be what everyone else is. Whether I have to keep forcing myself into places and situations that make my heart thump in fear and anxiety.

And so, my resolution. To not always force myself any more. To realize that it's not getting easier for me to go places I've never been before--because my anxiety over how to drive there and where I will park (seriously, that's the bulk of the fear) is so overwhelming. To realize that I will never EVER enjoy being in crowds, and that the density of people that defines "crowd" for me is increasingly decreasing. To accept that I don't like loud restaurants, and that I really don't like loud bars, and that I will never enjoy roller coasters, and that I really do hate scary movies, because I'm missing whatever it is that gives other people the post-scary-movie-or-ride rush, and I only get the scary.

I could go on and on. But you get the drift.

My resolution has a catch, however. I am now allowed to simply say no to any of the above long as I don't lie about it, as I have been wont to do in the past, making excuses for not wanting to go to concerts or movies or new places rather than being honest about why I wasn't going. Now, I can just say no, so long as I fess up about why. "I'd love to hear that concert," I might say, "but it's going to be too loud for me." "That's a movie I simply won't enjoy; you should go without me."

Because, you know what? I've learned these past several years to be proud, rather than apologetic, about who my son is, to talk about the ways autism permeates his life, and to thereby subtly insist that people accept him for who he is. And it's time for me to model that same kind of self-advocacy for him by also doing it for myself. To take a deep breath and convince both myself and the world around me that there's nothing wrong with being anxious, or overwhelmed by noise or temperature or the sensation of socks on my feet. And to do so without lying to anyone about it, without being ashamed of being a 49-year-old woman who still chews on pens and can't get a manicure because she has no nails and won't call the Chinese or pizza delivery numbers because she's scared of talking to strangers on the phone.

And I'll tell you, it's been ridiculously freeing. As is so often the case, not only do I feel better because I'm not pushing myself to 'man up' in situations that never end up well, but half the time, just saying what my concerns are means that a solution can be found. When I recently turned down an offer for a lunch from a friend at work because she wanted to go to an area I knew would be hard to find parking in, she simply asked, "How about if I drive?" Done. When a friend was enthusiastic about a special-occasion dinner at a restaurant I knew has live music and gets crazy crowded, I asked her if we could go somewhere else on a different night; she got to do both, and I got to gracefully bow out of what would have been an anxiety fest for me without hurting her feelings.

None of this, sadly, is going to save my pens or my nails. But it has saved a very small piece of my sanity. It even allowed me, tonight, to reply to a friend's thank you email after the Oscar party we had at our house with an acknowledgment of the fact that I took a number of "shut myself in my room for five minutes and chill out on Facebook" breaks. "I always love having everyone over," I wrote, "even if I can only handle the full-on sensory assault in smallish batches."

And I do love it. Even more when I can take breaks. When I let myself enjoy it my way, without beating myself up about being who I am.

It's only taken 49 years, but I'm getting there. And, hopefully, blazing a trail wide enough for N to be able to follow now, TODAY, rather than after years of unnecessary accommodation in the hopes of making himself be who he isn't.