matril

I've been rather remiss in blogging lately, both here and on my other blog, for a number of reasons. The first and most dramatic is that the frequency of Luke's aggressive episodes has spiked so abruptly that he went from perhaps one or two meltdowns a week to once or twice daily. It's exhausting, somewhat terrifying, and occupying a lot of my mental space even when he's at school. We're taking a number of measures to try to improve the situation, but as with most things in life, none of them are instantaneous. So, there's that.

Meanwhile, when I do have Luke-free time, I tend to bury myself in my Les Starwarbles hobby. Whether that's a healthy coping mechanism or not, I have no idea, but I'm almost done in any case. Episode VI should be finished in just a few days! Then, I don't know. I'm sure another time-sucking obsession will present itself. ;) Finally, as far as the other blog is concerned, I haven't had a topic grab me enough to write a whole entry about it, though I'm well aware that I've barely scratched the surface of exploring women in speculative fiction. When my brain's a little less fuzzed out, I assume more ideas will come.

But my Halloween costume ideas are ready-made, so here's a nice easy entry to write: the Halloween when Mark and I went thrift-store shopping to become Dwight and Angela from The Office.
( Read more... )

It's the fourth and final full week of April, so this will be my concluding post in this life-with-Luke series. I don't know that I can really tie everything up in a pretty bow. The story is ongoing, no tidy conclusion. Mostly, I've found that as soon as I think everything is settled, a new complication arises - but that's not always a bad thing. For better or worse, ( Change is the only constant. )

There are many events or changes that divide my life into sections - before and after high school or college, before and after marriage or becoming a mother. But the one that most defines the eras of my life has to be before and after Luke's diagnosis.

The changes didn't necessarily happen instantaneously, and in fact some shifts in our life began gradually before we had any notion of his autism. But I will always see my life in terms of Before and After. Where we live, how we live from day to day, our home and our possessions, are all deeply affected by Luke's autism. I'm not going to stick a label on it and call it either Good or Bad. As with most things, it's a complicated mix of positive, negative and indifferent, and there's no point in trying to pull out and identify every individual strand.

But ( here )

I figured after that fairly melodramatic post about Luke last time, I ought to give some manner of update. Oddly enough, though we haven't had much change either for better or worse, I'm feeling considerably more optimistic. Which goes to show that an attitude change is sometimes the greatest resource we have when the actual circumstances can't be altered much.

Why am I feeling better about this? I'm not sure. His teachers requested a meeting with us a few weeks back, and I was approaching it with dread, wondering if they were going to say they just couldn't handle him anymore and we needed to find another place for him to go to school. I tend to go straight for the worst possible scenario, however unlikely. I mean, it's not like they've never dealt with a 12-year-old boy struggling with puberty before, right? I knew that rationally but I couldn't help being paranoid.

In fact, they mostly wanted to talk about the various strategies they've been trying out to make sure we approved of them, as well as some observations they'd made on why he might be acting out. They noticed he was smiling during physical restraint, which indicated he just wanted intense physical attention and didn't know how to request it except by aggression! So they are trying to find safe ways for him to request it so it doesn't seem like he's getting rewarded for unacceptable behavior. They were also trying him out in different classrooms, since it's possible that other rambunctious students might have been setting him off. And we were only too happy to approve anything that might work. It's true that we didn't finish the meeting with a magical cure, but I just felt so heartened once again to sit with a team of people who are so invested in helping Luke.

Luke continues to have intense aggressive episodes at home, though I think I've started to have a stronger sense of the early warning signs, meaning I can sometimes redirect him before it escalates too much out of control. Of course this ridiculous winter has offered its own set of challenges, as we've yet to get through a full week of school without snow days. His schedule has been thrown awry and he gets quite restless being stuck in the house all day. He hates being cold, so playing outside doesn't usually offer much of an outlet. But on the other hand, when there's a snow day his dad is home as well (oh, how I love having a teacher husband at times like these) and Luke acts out much less frequently when he's around for whatever reason. Oh, I've pondered possible reasons, let me tell you. I've gone through the wringer of guilt about how I respond to stressful situations in a far more extreme manner than my husband, and it's all my fault that I've thus encouraged Luke to lash out around me because he knows he'll be rewarded with the Crazy Mom Show....but there's nothing good in that place. All that matters is dealing with the situation we're in now.

We were able to spend Luke's funding money on a bunk bed, which is fantastic. (And the delivery was on a rare snow-free day, so, hooray for good timing.) He doesn't settle down to sleep all that much easier so far, but at least Ryan can have his own space on the top bunk now. And the lower bunk offers Luke a more enclosed space, which is generally comforting to autistic kids. It's too early to see any long-term benefits, but I have to think it's helping him.

Truthfully, the majority of the time Luke can be found happily, quietly sitting somewhere as he spins his current preferred spinner. Emma and Ryan end up being far more exasperating with their more typical noisy, over-exuberant play (we're all suffering from a chronic case of cabin fever here), and then I wonder if I'd be better or worse at handling neurotypical children if I wasn't also handling one with autism. Another useless thing to dwell on. Let me come back to that attitude change. I still have moments of frustration, resentment, and fear. But at the bottom of it all, those feelings just aren't sustainable if I want to be at all functional. I have to actively decide to be positive. And it's starting to feel a little more natural to hope, a little less like I'm faking it. Maybe Harold Hill's philosophy wasn't all flim-flam after all: the Think System actually works.

Here's a confession: I hate Autism Awareness Month.

( Here we go )

Today is exactly one year since Luke was officialy diagnosed with autism. It's been a tumultuous year, to say the least. A flurry of referrals and IEPs and a veritable dictionary of new terminology. PDD-NOS, Asberger's, Sensory Intetgration Dysfunction, Non-Verbal Learning Disorder... It's too much to absorb all at once, but I've had time. What has changed? I'm more used to the idea now, though of course I'll never be happy about it. I know not to expect that Luke will suddenly just burst into fluent speech or initiate play with others without any prodding. I haven't given up hope that he'll improve, though.

And he has improved, even after just a year. Socially, he's very friendly and sweet, though he still prefers play on his own. He makes eye contact and responds more often to his name. His language....I don't see much change. That's the really rough thing. Language can take a long, long time for autistic kids. I have to be patient. If there's one quality I've had to develop this year, it's been patience. And I have a long, long way to go.

Here's hoping next year will find us a little farther along, and a little more capable of being Luke's parents.

This bit here is something I'd like to eventually expand into a sprawling fic, a counterpart to Another Point of View. (Oh, I'm not over-ambitious, not at all.... ;) Apologies if the Gungan isn't perfect. :P
( Exile )

So today we're starting the Big Step of potty training for Luke - of course we don't expect to see results right away, or even after a month or a year or ten years or - all right, so I'm feeling a bit bleak. The system, which is directed at near non-verbal kids, involves putting him on the potty every half hour, and checking his pants every fifteen minutes, with incentives for pointing to the "potty" picture and saying potty, for having dry underwear, and for actually going in the potty.

Well. It's tedious, to say the least. So far Luke has wet his pants three times and done nothing in the potty. He'll sit pretty willingly on the potty for the full five minutes, smiling pleasantly and repeating "brownie" when I remind him what he'll get if he goes in the potty. But of course he hasn't had a single taste of a brownie. Yes, I didn't expect him to catch on in the first day, but a part of me is thinking "So, this is my life for the next...how long?" Blech. Since the schedule is so demanding, I've been refraining from doing much else. The dishes are piling up in the sink. I picked up a tangled mess of yarn to try to sort out, the kind of mindless activity that I can drop at any moment to get Luke to the potty. Same with a book of Sudoku puzzles. But the result is a feeling of absolutely zero accomplishment, hitting my head against a brick wall at every turn. Add to that the nice little letter from a school district that my husband had interviewed with and was really feeling pretty positive about: "You're very well qualified and skillful, and we were quite impressed. Therefore, we hired someone else." It's all that stupid ugly monster Lack of Experience. Yeah, and just how does he get that experience, praytell? Not from you people, apparently. I feel like kicking someone in the head. I'll have to find an inanimate object instead...I guess...preferably something that will explode.

Just finished reading The Speed of Dark by Elizabeth Moon, the book about the autistic man in a sort of "Flowers for Algernon" vein. I liked it very much. I was deeply, personally affected by it because of my son, particularly because in the future world it's set in, he could be someone very much like the main character. But personal interests aside, it's a good book on its own merit. The protaganist is real, three-dimensional, someone who can be sympathetic without being pitied; who is strong and smart and insightful, and also happens to be autistic. The autism is a very integral part of his character, though, so it's heart-breaking to see him struggle with whether he wants to be "cured" or not. The meaning of "normal" is brought up again and again, and my favorite quote of the book is the subject title. I want to make an icon or a button out of it. It's so expressive. Well, the plot is pretty gripping, what with a scummy executive who's trying to exploit the autists in his group, and the tension between the protaganist and both those who care for him and those who resent him. No one is perfect, neither "normal" people nor autistic, and everyone is believable. The ending is satisfying, but very thought-provoking. I'm still not sure whether I'm happy about what happens or not, but it is a satisfying and fitting conclusion, and I won't soon forget my experience reading this book. I'm going to recommend it to everyone who asks me about books about autism, because it was more affecting for me than any non-fiction text. Which is ironic, because an actual autistic person would be much more likely to want non-fiction than fiction. I'm not autistic. But I hope I can understand, to some extent, those who are.

Well, we have Internet access at home now, so I can frivol away my time browsing the web from the comfort of my own room without a time limit, except for the fact that being a mother is more demanding than a full time job. ;) I find myself having a bit more free time lately, though, because my son is now attending an intensive pre-school espcecially for autistic and PDD kids. All day long. Five days a week. It's pretty jolting. I wasn't expecting to send him away that long until he was six. I guess a lot of my expectations have been turned on their heads. But you know, you can't go into this saying, "Sure, I'll have a kid, but if he has any problems or abnormalities, forget it." No, you get what you get and you don't change your mind. And I believe that God doesn't give me more than I can handle. I do firmly believe, however, that He'll push it right up to my very limit. *sigh*

So anyway, I've been revising my first and second novels to make the whole series smoother and more in line with what I did in the third book. I've developed the series very haphazardly, plunging ahead without really alwas knowing where I'm headed. Probably not the wisest way to write, but I've certainly been enjoying it. Now I just need about ten other readers (my husband and sister are admittedly biased) to critique it and prod me into submitting this stuff to be published. Or...maybe I'll finish the series first and then revise the whole thing all over again. I imagine if I ever get aything published, I'll be making revisions in the margins. :D

As for fanfic, I'm currently working on two long pieces, my first AU and my final Jar Jar fic taking place during and after Episode III. I've kind of stalled on both of them, partly because I've been focusing on my original work, and partly because the scope of both of them is a little overwhelming. However, I have a bunch of small ficlets that I'd like to post here, if anyone's interested. Mostly Anakin-related, Episode III-inspired - big surprise there, eh?