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 GIGGLING...is possibly the sweetest sound on earth. I dare you to listen and not to smile. It's absolutely impossible.
Sunday, April 21, 2013
Monday, April 8, 2013
The Dog Warmed His Heart
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| 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. |
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 in...um...I 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 situations...so 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.
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 situations...so 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.
Wednesday, October 17, 2012
A "Good" Update
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| None of these photos from our summer vacation have anything to do with anything in these posts. They just make me smile. |
Baroy and I met yesterday morning with N's teacher about some behaviors (and peer responses) in class that we were worried about--some teasing, some work refusal, some things disappearing from his desk. It was a very productive meeting in which we were able to explain to his teacher, Mr. G, why trying to send N into another classroom with a note for that teacher--as a way to get N out of the classroom so Mr. G could tell the kids there to knock off egging him on with his silly behaviors--would never work. Still...he was trying to get N out of the room to tell the kids to knock it off. That's awesome. And next time, it will actually work, since we gave him much better options than sending our terrified-of-his-peers kid into a room of kids he doesn't know well.
But that's not why I'm writing. N's RSP teacher--who will be the leader on his IEP--joined us for the meeting, and afterward she and I and Baroy talked a bit more specifically about some of the learning issues he's having. Anyway, I asked her point-blank if she thought that he would have any trouble retaining services at all for next year, and she looked at me like I was insane. (Which is very good news, but always knocks me sideways a little.)
And then I said something about wanting to focus on reading, etc., and made a somewhat oblique reference to "and if that means we have to give up some of the current services..." and she stopped me DEAD and said, "I would STRONGLY recommend not giving up ANY of his current services for next year, especially as he moves into middle school. We're seeing such good progress, but he'll need the supports as he moves on."
So, um, yeah. That. Never mind?
(And thanks, you guys. All of you guys.)
Thursday, October 11, 2012
His Good, or the Greater Good?
(Let's pretend it hasn't been at least six months, OK? Let's pretend I was just here yesterday. And let's pretend I've updated you on everything that's happened. Which isn't much. Just regular life. Busy, busy, regular life. So...moving on...)
N's triennial IEP will be at the end of November or the beginning of December, depending on when everyone can make it.
I have a lot of concerns about what the evaluations will find this time around; I have even more concerns about which independent evaluations we should pay for and do. I have concerns about his transition to middle school. I have concerns about my concerns. I could go on, but I won't.
What I wanted to talk about here, to ask you all about--you being everyone, whether you have special needs, have a special needs kid, or just have an opinion--is just one of those concerns. The one about what I would like N to have from his school and his district in a perfect world, versus what I really have the 'right' to ask for in this very much imperfect world.
In short: Our school district is dying. There have been meetings every week about the increase in class sizes, the huge number of teachers (relatively speaking; this is a small district) who will be laid off, the 20 fewer days of school kids will attend next year and the year after that. This isn't about special education; it's a full-out, wholesale bloodbath.
Now, back to N. There are services he gets that are absolutely essential. If anyone even starts to talk about taking them away, I am going to scratch their eyes out. There are services he's not getting that he needs, like a reading intervention that will actually work for him. In that perfect world I've talked about, I would ask for a private school, because the dedicated professionals in public school still haven't quite reached him; because he's a sixth grader who still works way too hard to decode, much less really read; because he keeps testing at a third-grade level because he cannot both read and comprehend what he's read, and he certainly can't read, comprehend, and then make whatever comprehension he's acquired into the shapes of written or typed words and letters.
Frankly, though, I can't even imagine asking. Not now, not in this environment.
In fact, I wonder about whether we oughtn't be offering to let some things go, rather than insisting on more and more. There are, after all, one or two services the school provides that are great for him but, in reality, are not drop-dead critical. Not essential. Or, rather, things we could provide for him by paying out-of-pocket, or by taking on a weekly copayment.
Nobody has said anything to me, yet, about reducing his services. They may try to do so at this IEP; they may try to do it in ways that I'll object to. But I wonder if it's maybe a little bit my civic duty to offer to take on the things that I as a parent am able to do, am able to pay for. It's clearly better for all his services to go through one portal, for all his providers to be connected and to talk to one another and to advocate on his behalf together. But if the kids in gen ed--including Em--are going to get screwed (and they are, there's no other way to describe it), is it my duty at all to try to lighten the burden where I can? Would I be doing a disservice to my kid? Am I doing a disservice by not insisting on a special private school? Am I doing a disservice by not dumping every dollar I have as well as those I can borrow into figuring out what really would be the best way to educate him and/or paying for that education? Is it possible to NOT do a disservice to my kid? Is it possible to do this "right"? Because if there is, just tell me how that's done. I'd give anything to know how to do the right thing.
Shit. I'd give anything to just know what the right thing is.
 |
| N during summer vacation trip to Morro Bay. It was cold. It was great. |
I have a lot of concerns about what the evaluations will find this time around; I have even more concerns about which independent evaluations we should pay for and do. I have concerns about his transition to middle school. I have concerns about my concerns. I could go on, but I won't.
What I wanted to talk about here, to ask you all about--you being everyone, whether you have special needs, have a special needs kid, or just have an opinion--is just one of those concerns. The one about what I would like N to have from his school and his district in a perfect world, versus what I really have the 'right' to ask for in this very much imperfect world.
In short: Our school district is dying. There have been meetings every week about the increase in class sizes, the huge number of teachers (relatively speaking; this is a small district) who will be laid off, the 20 fewer days of school kids will attend next year and the year after that. This isn't about special education; it's a full-out, wholesale bloodbath.
Now, back to N. There are services he gets that are absolutely essential. If anyone even starts to talk about taking them away, I am going to scratch their eyes out. There are services he's not getting that he needs, like a reading intervention that will actually work for him. In that perfect world I've talked about, I would ask for a private school, because the dedicated professionals in public school still haven't quite reached him; because he's a sixth grader who still works way too hard to decode, much less really read; because he keeps testing at a third-grade level because he cannot both read and comprehend what he's read, and he certainly can't read, comprehend, and then make whatever comprehension he's acquired into the shapes of written or typed words and letters.
Frankly, though, I can't even imagine asking. Not now, not in this environment.
In fact, I wonder about whether we oughtn't be offering to let some things go, rather than insisting on more and more. There are, after all, one or two services the school provides that are great for him but, in reality, are not drop-dead critical. Not essential. Or, rather, things we could provide for him by paying out-of-pocket, or by taking on a weekly copayment.
Nobody has said anything to me, yet, about reducing his services. They may try to do so at this IEP; they may try to do it in ways that I'll object to. But I wonder if it's maybe a little bit my civic duty to offer to take on the things that I as a parent am able to do, am able to pay for. It's clearly better for all his services to go through one portal, for all his providers to be connected and to talk to one another and to advocate on his behalf together. But if the kids in gen ed--including Em--are going to get screwed (and they are, there's no other way to describe it), is it my duty at all to try to lighten the burden where I can? Would I be doing a disservice to my kid? Am I doing a disservice by not insisting on a special private school? Am I doing a disservice by not dumping every dollar I have as well as those I can borrow into figuring out what really would be the best way to educate him and/or paying for that education? Is it possible to NOT do a disservice to my kid? Is it possible to do this "right"? Because if there is, just tell me how that's done. I'd give anything to know how to do the right thing.
Shit. I'd give anything to just know what the right thing is.
Friday, April 20, 2012
Backstage
As Em left the house this morning, Baroy said to her, "Break a leg today."
Something about that--not "Have a great day at school," or "See you tonight"--sent sparks of joy through my soul. I can't exactly explain. But I sort of want to try.
Em is a freshman in high school, and started taking drama as an elective this year. And it has simply and totally electrified her. So when auditions for the first play of the year were announced, she tried out. And got called back. But didn't get a role.
"I just wanted to be part of it," she said to us that night, sadly.
"So ask how you can be," we both told her.
That next day, she went up to the head of the drama department and asked, "How can I help?" And he thanked her profusely, since she was one of only two kids who went from the director's "No, thanks" to "I'm sure there are other ways I can be useful."
And thus a star was born.
She worked that show, learning more about theater than she would have as a cast member. When they announced the spring theater schedule (there were two musicals and one play), she tried out for them, too, but still didn't get a role. And so she became the Assistant Director for "You're a Good Man Charlie Brown." And when that was finished? The head of the drama department asked her if she would pleasepleaseplease help out with the play, which was about to go up. He called her magnificent. She joked that she's never going to get a role in a play at the school because they're always going to want her on the crew. She may be right.
After those three almost-back-to-back theater experiences, we had a week off for spring break. There are two MORE plays going up; one of them starts tonight, the other in two weeks. So perhaps it shouldn't have surprised any of us to get a call from Em on the second day back to school, which was Wednesday: "Mr. B wants to know if I can stage manage the play going up this week," she said. "And he says they'll probably need me for the next one, too."
Tonight is opening night; she's been working on this play for just two days...but they've been long days, after school, into the late evening. When we realized that she has a soccer game that will interfere with her being there in time for the Saturday performance, she went to the director of the play and talked with him about how she would make sure that someone was ready to handle her jobs that day. Two days in, and she is IN CHARGE.
Remember, Em is 14 years old. A freshman. New to this large suburban LA school, which is a big pond by any definition. And yet, she has already become the go-to girl for the theater department's backstage needs.
Recently, the department held what were essentially auditions for the next-level drama classes; everyone who could fit it into their schedule for the next year would get in, but they were creating a new four-tier system. Instead of classes for sophomores, juniors, and seniors each, they are mixing the grades, creating small groups of 'players' based. I could brag about the fact that Em skipped a level and was placed higher than expected. But that's not what stood out for me when she told me about the auditions. What stood out was that, when she went up to do her monologue, the department head used her as an example to the group, asking her how many plays she'd tried out for ("all of them," she said), how many she'd gotten into ("uh...none") and how many she'd worked ("three" at that time). This, he told the class, though I can't quote him because I wasn't there, is what theater is about. This, he told the class, is the kind of commitment and passion he wants to see.
And from what I heard, she beamed. She had every right to. I sure did, hearing about it.
But that's not entirely why the "Break a leg" lit me up this morning. It's part, but not all. The other part is just how proud her father is of her. Remember, he's an actor and playwright. He loves theater. LOVES theater. Whereas everyone else in LA talks about their screenplays--and he has written more than one of those, for sure--he's all about his plays. He takes theater very seriously. He does not suffer theatrical fools gladly.
And so the fact that he practically glows with pride over his daughter, and that he shows it by treating her like any other professional in the theater, by talking with her about the shenanigans backstage and giving her advice on how to handle people who don't live up to her standards, by telling her to "break a leg" as she leaves the house in the morning, despite the fact that the play doesn't start until tonight and there's a whole day of school in between...Something about it. Something. She's so grown up. She's earned the respect and the accolades.
There's been a change in her, and it's been dramatic. She's a shining star, that girl.
Something about that--not "Have a great day at school," or "See you tonight"--sent sparks of joy through my soul. I can't exactly explain. But I sort of want to try.
Em is a freshman in high school, and started taking drama as an elective this year. And it has simply and totally electrified her. So when auditions for the first play of the year were announced, she tried out. And got called back. But didn't get a role.
"I just wanted to be part of it," she said to us that night, sadly.
"So ask how you can be," we both told her.
That next day, she went up to the head of the drama department and asked, "How can I help?" And he thanked her profusely, since she was one of only two kids who went from the director's "No, thanks" to "I'm sure there are other ways I can be useful."
And thus a star was born.
She worked that show, learning more about theater than she would have as a cast member. When they announced the spring theater schedule (there were two musicals and one play), she tried out for them, too, but still didn't get a role. And so she became the Assistant Director for "You're a Good Man Charlie Brown." And when that was finished? The head of the drama department asked her if she would pleasepleaseplease help out with the play, which was about to go up. He called her magnificent. She joked that she's never going to get a role in a play at the school because they're always going to want her on the crew. She may be right.
After those three almost-back-to-back theater experiences, we had a week off for spring break. There are two MORE plays going up; one of them starts tonight, the other in two weeks. So perhaps it shouldn't have surprised any of us to get a call from Em on the second day back to school, which was Wednesday: "Mr. B wants to know if I can stage manage the play going up this week," she said. "And he says they'll probably need me for the next one, too."
Tonight is opening night; she's been working on this play for just two days...but they've been long days, after school, into the late evening. When we realized that she has a soccer game that will interfere with her being there in time for the Saturday performance, she went to the director of the play and talked with him about how she would make sure that someone was ready to handle her jobs that day. Two days in, and she is IN CHARGE.
Remember, Em is 14 years old. A freshman. New to this large suburban LA school, which is a big pond by any definition. And yet, she has already become the go-to girl for the theater department's backstage needs.
Recently, the department held what were essentially auditions for the next-level drama classes; everyone who could fit it into their schedule for the next year would get in, but they were creating a new four-tier system. Instead of classes for sophomores, juniors, and seniors each, they are mixing the grades, creating small groups of 'players' based. I could brag about the fact that Em skipped a level and was placed higher than expected. But that's not what stood out for me when she told me about the auditions. What stood out was that, when she went up to do her monologue, the department head used her as an example to the group, asking her how many plays she'd tried out for ("all of them," she said), how many she'd gotten into ("uh...none") and how many she'd worked ("three" at that time). This, he told the class, though I can't quote him because I wasn't there, is what theater is about. This, he told the class, is the kind of commitment and passion he wants to see.
And from what I heard, she beamed. She had every right to. I sure did, hearing about it.
But that's not entirely why the "Break a leg" lit me up this morning. It's part, but not all. The other part is just how proud her father is of her. Remember, he's an actor and playwright. He loves theater. LOVES theater. Whereas everyone else in LA talks about their screenplays--and he has written more than one of those, for sure--he's all about his plays. He takes theater very seriously. He does not suffer theatrical fools gladly.
And so the fact that he practically glows with pride over his daughter, and that he shows it by treating her like any other professional in the theater, by talking with her about the shenanigans backstage and giving her advice on how to handle people who don't live up to her standards, by telling her to "break a leg" as she leaves the house in the morning, despite the fact that the play doesn't start until tonight and there's a whole day of school in between...Something about it. Something. She's so grown up. She's earned the respect and the accolades.
There's been a change in her, and it's been dramatic. She's a shining star, that girl.
Thursday, April 12, 2012
For Autism Awareness Month
I've been so remiss; it's not even worth explaining. And this isn't even going to make up for it; it's not going to be some deep discussion of autism or the awareness thereof or whether we ought to be past all that (we ought). I'm here only because I've been putting a bunch of N-isms on Facebook lately, and that means there are some of you--if you're still out there--who haven't seen or heard these yet.
-------
I told N that I'd gotten him some of the frozen french-bread pizzas
he likes so much. "You knew I like those," he said, nodding his head
sagely. "You know me pretty well."
It is damned near impossible to keep a straight face around that child sometimes...
-------
N lost his favorite blue fleecy jacket at the golf course today. Losing things he loves is hard for our boy. I was trying to explain to him that it wasn't as bad as he was making it out:
Me: It's just a jacket. It's a thing that you lost, not a person. It's not like someone died. It's just a lost thing.
N: But it IS like someone died. Jacket, Jack...Grandpa Jack?
And he crumbled to the floor in dramatic fashion.
(Usually, I can hold it together, but this time I burst out laughing. I think he bought my explanation that it was because he made a connection I would never have thought of, but it was touch and go there for a few moment. That child.)
-------
Last night, walking past as I was putting food on his plate, N says, "Oooh, Fwench fwies!"
I look at him with a smile, and he stops and says, "What? I was just using my baby voice. Or, actually, the voice I use when i say something in a silly way."
-------
It is damned near impossible to keep a straight face around that child sometimes...
-------
N lost his favorite blue fleecy jacket at the golf course today. Losing things he loves is hard for our boy. I was trying to explain to him that it wasn't as bad as he was making it out:
Me: It's just a jacket. It's a thing that you lost, not a person. It's not like someone died. It's just a lost thing.
N: But it IS like someone died. Jacket, Jack...Grandpa Jack?
And he crumbled to the floor in dramatic fashion.
(Usually, I can hold it together, but this time I burst out laughing. I think he bought my explanation that it was because he made a connection I would never have thought of, but it was touch and go there for a few moment. That child.)
-------
Last night, walking past as I was putting food on his plate, N says, "Oooh, Fwench fwies!"
I look at him with a smile, and he stops and says, "What? I was just using my baby voice. Or, actually, the voice I use when i say something in a silly way."
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| N's latest test of his ability to locate states and remember their capitals. His spelling. It slays me. Which one's your favorite? |
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