A "Good" Update

None of these photos from our summer vacation have anything to do with anything in these posts. They just make me smile.

Remember all that angst from the other day?

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.)

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 during summer vacation trip to Morro Bay. It was cold. It was great.

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.

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.

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." 

And if that, my friends, isn't the best example ever of the war between humor and the ingrained literalness of an ASD kid, I don't know what is.


-------

N's latest test of his ability to locate states and remember their capitals. His spelling. It slays me. Which one's your favorite?

-------
Happy April, folks.

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:

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.

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:

Dear Mommy,

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 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 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.

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.