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.
Friday, April 20, 2012
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."
 | |
| N's latest test of his ability to locate states and remember their capitals. His spelling. It slays me. Which one's your favorite? |
Monday, March 12, 2012
No Justifications
On her blog, the ever-thoughtful and always-inspiring Jennifer Byde Meyers writes about the horrible news making its way around the special-needs community at the moment: the murder of a young autistic man by his mother, who then took her own life.
I hadn't realized how close to home this was for Jennifer until I read her post today. That's what makes her ability to assess and summarize the key issues in such a clear-headed way even more remarkable, if you ask me:
For all the ways in which N struggles, for all his delays, the issues around this story--in particular, the issue of services for adults with autism who age out of the school system--are not the ones that keep me up at night. N will make his way in this world; he will graduate from high school in and around when his peers do, and I have hope that he will go on to college if that's where his passions take him.
But the more wide-ranging issue--the one that shows our society perceiving people with autism as tragic figures, worthy of pity but not quite equal to the rest of us; the one that shows our society expressing understanding of why a parent would or could kill his or her own child--is just as much ours to own as anyone else's. Not just because N is autistic. But because we are human beings, and what happened here was wrong, and terrible, and I will not, cannot, stand back and listen to anyone talk about why it may have been justified.
It absolutely was not. Thank you, Jennifer, for making that so obviously and abundantly clear.
I hadn't realized how close to home this was for Jennifer until I read her post today. That's what makes her ability to assess and summarize the key issues in such a clear-headed way even more remarkable, if you ask me:
If we let this story focus on the hardships of this woman, we are lost. The young man was killed, and it undermines that significance when we read in another article that one could understand what "would drive a parent of an autistic child to commit such a senseless act." Anyone who says they "understand" is reinforcing the idea that my son, and other people like him, are less valuable. It may be unintentional, but that sympathy starts to sound a lot like taking his life is somehow "understandable," because things were hard and the young man required a lot of help.
Yes, we need better services, but we have always needed better services. Yes, we need support for parents who are life-long caretakers, and better adult programs for that magic age when children become adults overnight. We need infrastructure and life-skills support for adults with autism. There was a program available for this family, but there really are not a lot of options when kids "age-out" of the education system. But these are all separate issues. These are the things we are working for. That's what we advocate for. And as for worry, there is not a single parent I know in this community that is not concerned about their child's future. Exhaustion, frustration, fear...
It is not a list of reasons why taking your child's life is justified.It is not a list of reasons why taking your child's life is justified. It absolutely is not.
For all the ways in which N struggles, for all his delays, the issues around this story--in particular, the issue of services for adults with autism who age out of the school system--are not the ones that keep me up at night. N will make his way in this world; he will graduate from high school in and around when his peers do, and I have hope that he will go on to college if that's where his passions take him.
But the more wide-ranging issue--the one that shows our society perceiving people with autism as tragic figures, worthy of pity but not quite equal to the rest of us; the one that shows our society expressing understanding of why a parent would or could kill his or her own child--is just as much ours to own as anyone else's. Not just because N is autistic. But because we are human beings, and what happened here was wrong, and terrible, and I will not, cannot, stand back and listen to anyone talk about why it may have been justified.
It absolutely was not. Thank you, Jennifer, for making that so obviously and abundantly clear.
Tuesday, February 21, 2012
It All Feels the Same, I Guess
My brother-in-law, the kids' beloved Uncle Stevie, was in for the long weekend, and left tonight on a red eye back home. After he'd gotten into PJs and brushed his teeth, N appeared by the side of my bed, looking somber, and handed me a note. It read:
I do know, however, that I love when he writes me notes. You just never know what's going to be inside one of those haphazardly folded missives. That boy. I say it all the time. That boy.
*This is how he signs ever letter or note or ANYTHING he ever writes to me EVER, and is the way he's done it since he was four years old. I do not know why. I do not really want it to stop.
Dear Mommy,I don't know whether to laugh (because ohdeargodinheaven he met Grandpa Jack--my father, who passed away in 2007, when N was six years old--maybe four times in his life, tops, for a couple of hours at a time, and so I have no idea why he's so attached to his memory, but I guess someone ought to be) or cry or fly back East and strangle Uncle Steve for letting him watch shows I have explicitly forbidden. I also don't know how to teach him how to differentiate between different kinds of feelings of sad. "I'm sad about Grandpa Jack," is what he falls back on almost any time he starts to cry about anything, from a skinned knee to a disappointing golf game, when he's asked to explain why he's so upset.
I am very sad that Uncle Steve left and that reminds me about Grampa Jack and he left us and now I'm about to cry.
Love N to Mommy or to Mommy love N*
P.S. I watched Family Guy with Uncle.
I do know, however, that I love when he writes me notes. You just never know what's going to be inside one of those haphazardly folded missives. That boy. I say it all the time. That boy.
*This is how he signs ever letter or note or ANYTHING he ever writes to me EVER, and is the way he's done it since he was four years old. I do not know why. I do not really want it to stop.
Tuesday, January 17, 2012
Bravery, by N
N had to write a
personal narrative tonight. This is what he wrote, on his own, without
any assistance. That never happens. Ever. In fact, the insight, the independence...it's all pretty much
unprecedented. I just had to share.
(Tiny bit of back story--for those who didn't live through it with me on Twitter in July--is that he went to a six-week inclusion program at a local elementary school last summer. The first day he was so terrified he was practically frozen. I was devastated by how he was--clearly and unequivocally--the most impaired kid in the room that day, despite many of the kids being "his people." I was convinced he would never go back. By the third day, he didn't want it to end. By the second week, he was not only excited to go, but excited to ride the bus home, despite the fact that he's never ridden a school bus in his life. That, too, was unprecedented. He's right. He was so brave.)
When
I first went to summer school I was scared. Then after a little while I
was not scared anymore. After a few days I started to make some friends
even though I am scared of making friends.
I met two new friends named C and G. When we had recess I was scared to sit with C and G but, I did it anyway.
The first time I went on the bus I felt scared but, then I sat with C and I felt much better. There was a bus driver that I did not like. So they changed the bus driver called A who I like very much. That is why I am so brave.
(Tiny bit of back story--for those who didn't live through it with me on Twitter in July--is that he went to a six-week inclusion program at a local elementary school last summer. The first day he was so terrified he was practically frozen. I was devastated by how he was--clearly and unequivocally--the most impaired kid in the room that day, despite many of the kids being "his people." I was convinced he would never go back. By the third day, he didn't want it to end. By the second week, he was not only excited to go, but excited to ride the bus home, despite the fact that he's never ridden a school bus in his life. That, too, was unprecedented. He's right. He was so brave.)
I met two new friends named C and G. When we had recess I was scared to sit with C and G but, I did it anyway.
The first time I went on the bus I felt scared but, then I sat with C and I felt much better. There was a bus driver that I did not like. So they changed the bus driver called A who I like very much. That is why I am so brave.
Saturday, December 3, 2011
The Half of It
He's working on a project for school right now. It's 9 pm on a Saturday, but let's put that aside. And although it was a project that was supposed to be almost completed at school and only 'enhanced' at home and we actually ended up doing more than 75% of it here, let's put that aside, too. Because he's just spent the last 15 minutes "decorating" the cover of the project, despite the fact that he doesn't ever DO that. And he's working on the cover by himself, which he doesn't ever do either. That's why I'm all about the putting of that other stuff aside.
But the reason I'm writing, and the reason I'm giggling, is that he just called up the stairs to let me know that I'm going to love it when I see it.
"I'm sure I will," I reply. "I always love things you do when you put so much hard work into them."
"Well, you'll also love it because it's like a rainbow, except with black and brown."
"That sounds lovely," I say, smiling to myself.
"Oh, you don't know the half of it," he responds. With exactly the right tone. I don't know where he gets these phrases, but what I really don't know is how he learns to say them with such pitch-perfect aplomb.
And it's true, besides. I don't know the half of it. I may not even know the quarter of it. Except I was right. It is lovely.
(The IEP went fine, by the way. There was the heartbreaking moment, but it was brief, and I got past it. Mostly, there were the "we're very lucky" moments, as different members of his team began to play off of one another, getting excited by the ways they could back up each others' goals. My favorite moment was when the psychologist who works with him heard about the plans the OT has to get him to access the school cafeteria's hot lunch line, which he has never once looked at, much less used. She literally squealed at one point, saying, "Ooooh, and I could..." Even the brand-new SLP, who is very possibly one of N's people from what little I've seen of him, came up with some ways to back up his social skills goals during their speech sessions. We are, indeed, very lucky. There are things that are not happening, and may never happen, which I would like to see happen...but it won't be for lack of caring or passion for my boy. Not everyone can say that.)
But the reason I'm writing, and the reason I'm giggling, is that he just called up the stairs to let me know that I'm going to love it when I see it.
"I'm sure I will," I reply. "I always love things you do when you put so much hard work into them."
"Well, you'll also love it because it's like a rainbow, except with black and brown."
"That sounds lovely," I say, smiling to myself.
"Oh, you don't know the half of it," he responds. With exactly the right tone. I don't know where he gets these phrases, but what I really don't know is how he learns to say them with such pitch-perfect aplomb.
And it's true, besides. I don't know the half of it. I may not even know the quarter of it. Except I was right. It is lovely.
(The IEP went fine, by the way. There was the heartbreaking moment, but it was brief, and I got past it. Mostly, there were the "we're very lucky" moments, as different members of his team began to play off of one another, getting excited by the ways they could back up each others' goals. My favorite moment was when the psychologist who works with him heard about the plans the OT has to get him to access the school cafeteria's hot lunch line, which he has never once looked at, much less used. She literally squealed at one point, saying, "Ooooh, and I could..." Even the brand-new SLP, who is very possibly one of N's people from what little I've seen of him, came up with some ways to back up his social skills goals during their speech sessions. We are, indeed, very lucky. There are things that are not happening, and may never happen, which I would like to see happen...but it won't be for lack of caring or passion for my boy. Not everyone can say that.)
Wednesday, November 16, 2011
Prepping
N's annual IEP meeting is Monday.
I've been prepping. Like crazy. Emphasis not on the 'like,' but very much on the 'crazy.'
I've talked to his OT, and I know what she's planning on recommending. It involves a reduction in services, but not an annihilation of them. I'm OK with it.
I've talked to his psychologist, and I know what she's planning on recommending. It involves more social-skills related goals, and no reduction in services.
I haven't talked to--or met--his SLT, though Baroy has. From his report, I'm not sure I really care what happens there. (He's not impressed.)
Neither of us has talked to his RSP teacher recently, but I know she won't be suggesting a reduction in his time with her, and that she'll be open to the ideas I want to bring up.
And I also know that his classroom teacher will bring ideas and thoughtful experience with her, having worked with him not only these past few months quite successfully, but as his classroom teacher in second grade.
I've written out a list of questions. I've printed out blog posts and emails to remind me of what I want to say. I have five days, and I'm already pretty much ready.
So why the emphasis on the crazy?
I don't know. That's why it's crazy.
But also, I do know, a little. I know that no matter how well Baroy and I prep for this meeting, something's going to blindside me, and probably not in a good way. Some comment; some thought. Maybe just the putting into words of where he is and/or isn't. That's what IEPs do. They hurt.
I also know that no matter how well Baroy and I prep for this meeting, the plan we put together won't be perfect. Not even close. What N needs doesn't exist at this school, and possibly not in this school district. I say that as if I know what he needs; I don't. But I know that whatever it is, it's not what he's getting, and he's getting pretty much the best of the best they have to offer. He's getting all sorts of services, and some of them have been exceptional, and some of them are just "the best they have to offer," but not the best thing for him.
I also ALSO know that pretty much every single word Stimey wrote here could have been and still could be written about N rather than Jack; in fact, I said so in the comments. And that makes me sad. It makes me wonder if the choices I've made, and the choices I'm about to make, are the right ones, the best ones, all things considered.
Yesterday, in a meeting with my boss that (clearly) veered very much off-topic, I was talking about this very subject. She understands; she has a nephew on the spectrum, and a niece who needs evaluating for some kind of learning difference.
"The problem," I told her, "is that I spend my working life writing about science. But this? This parenting thing? It's blind faith. No way to make a different choice, see how that would have come out. No way to explore the N-related data for various outcomes, and use that information to inform what I do going forward. I know how this particular arm of the experiment is turning out, so far. But I'll never know if he would have thrived in the special day class, or in a private school for special needs kids. I'll never know if he would have been destroyed in that setting, either. I will, simply, never know if what I did was the right thing."
And so on Monday Baroy and I will go in and make some more decisions. We'll push on some things; we'll back off on others. We'll trust, and we'll question. We'll smile, and we'll break a little inside. But we won't know the one thing I need to know. We'll never know if this is the right thing, the best thing, for N.
No matter how much I prep.
I've been prepping. Like crazy. Emphasis not on the 'like,' but very much on the 'crazy.'
I've talked to his OT, and I know what she's planning on recommending. It involves a reduction in services, but not an annihilation of them. I'm OK with it.
I've talked to his psychologist, and I know what she's planning on recommending. It involves more social-skills related goals, and no reduction in services.
I haven't talked to--or met--his SLT, though Baroy has. From his report, I'm not sure I really care what happens there. (He's not impressed.)
Neither of us has talked to his RSP teacher recently, but I know she won't be suggesting a reduction in his time with her, and that she'll be open to the ideas I want to bring up.
And I also know that his classroom teacher will bring ideas and thoughtful experience with her, having worked with him not only these past few months quite successfully, but as his classroom teacher in second grade.
I've written out a list of questions. I've printed out blog posts and emails to remind me of what I want to say. I have five days, and I'm already pretty much ready.
So why the emphasis on the crazy?
I don't know. That's why it's crazy.
But also, I do know, a little. I know that no matter how well Baroy and I prep for this meeting, something's going to blindside me, and probably not in a good way. Some comment; some thought. Maybe just the putting into words of where he is and/or isn't. That's what IEPs do. They hurt.
I also know that no matter how well Baroy and I prep for this meeting, the plan we put together won't be perfect. Not even close. What N needs doesn't exist at this school, and possibly not in this school district. I say that as if I know what he needs; I don't. But I know that whatever it is, it's not what he's getting, and he's getting pretty much the best of the best they have to offer. He's getting all sorts of services, and some of them have been exceptional, and some of them are just "the best they have to offer," but not the best thing for him.
I also ALSO know that pretty much every single word Stimey wrote here could have been and still could be written about N rather than Jack; in fact, I said so in the comments. And that makes me sad. It makes me wonder if the choices I've made, and the choices I'm about to make, are the right ones, the best ones, all things considered.
Yesterday, in a meeting with my boss that (clearly) veered very much off-topic, I was talking about this very subject. She understands; she has a nephew on the spectrum, and a niece who needs evaluating for some kind of learning difference.
"The problem," I told her, "is that I spend my working life writing about science. But this? This parenting thing? It's blind faith. No way to make a different choice, see how that would have come out. No way to explore the N-related data for various outcomes, and use that information to inform what I do going forward. I know how this particular arm of the experiment is turning out, so far. But I'll never know if he would have thrived in the special day class, or in a private school for special needs kids. I'll never know if he would have been destroyed in that setting, either. I will, simply, never know if what I did was the right thing."
And so on Monday Baroy and I will go in and make some more decisions. We'll push on some things; we'll back off on others. We'll trust, and we'll question. We'll smile, and we'll break a little inside. But we won't know the one thing I need to know. We'll never know if this is the right thing, the best thing, for N.
No matter how much I prep.
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