matril: (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... )


Dec. 16th, 2015 12:01 pm
matril: (matril)
Many years ago, a boy named Luke was born. His parents were very excited as they prepared for his birth. He was their firstborn, and they rejoiced in that. They also worried and wondered if they would be able to take care of him properly. He was born at a time of great uncertainty in their lives. But his mother named him Luke, a name that always filled her with hope.

Read more... )

The Force is strong in this one.
Read more... )
matril: (matril)
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. )


Apr. 13th, 2015 11:53 am
matril: (matril)
As I said before, everything in our lives was affected by Luke's diagnosis, and continues to be. Some of those effects are obvious, like having him in school full time since age three, but there were other, broader changes, rippling outward pretty much indefinitely.

For instance... )


Apr. 7th, 2015 12:18 pm
matril: (matril)
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 )


Apr. 2nd, 2015 01:27 pm
matril: (matril)
So it's Autism Awareness month, and we all know what that means for me. Okay, maybe not. I'd like to hope I'm in a little better place this year. Maybe it's because I already got my rant out of the way in January.

The truth is, writing long soul-wrenching rants is very therapeutic for me. While my readers might come away from such a post thinking I'm broken, I actually feel much better after getting it all out in semi-eloquent prose. This month, though, I want to do something more than use LiveJournal as a kind of electronic therapist, by offering what little I can offer regarding this nebulous concept of Autism Awareness. I don't know what it's like to be autistic, and I don't know what it like for every parent of an autistic child. I only know what it's like to be Luke's mother. For whatever that's worth, I'm going to tell you what I know about that, in the form of weekly entries throughout this month. I'm going to be honest and thorough, and even more long-winded that usual. In order to more accurately capture some of the feelings I had over time, I'll include excerpts from my journals. I'll start with the beginning.

A long, long time ago (well, almost thirteen years) )
matril: (matril)
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.
matril: (matril)
I knew this was coming.

Read more... )
matril: (matril)
Here's a confession: I hate Autism Awareness Month.

Here we go )


Nov. 13th, 2006 05:19 pm
matril: (Default)
I'll get to my drabble in a minute, but first of all, I've had a rather interesting day. This morning I finally got to a support group for parents of autistic children. I've been wanting to go, but having no car during the day made it pretty well impossible. However, today my mother-in-law was able to drive me up there. It was a good meeting. Only four other people there, which kind of surprised me - I'm sure there's more parents than that in the area who need support. Most of them had some pretty challenging situations - single parenthood, multiple children with disabilities of some sort of another - it was illuminating. I know I have many challenges ahead of me with Luke, but there's always hope that he'll progress to some extent. And just seeing Emma learn to talk at the typical age is a blessing, knowing that she could just as easily have faced the same delays as her brother.

Then I got home and found two messages from the school nurse. Darn. Luke has a minor cold, but more than that he woke up far too early and was so tired he fell asleep on the way to school. He was too cranky when he woke up. So I picked him up, brought him home, and actually got him to take a nap. Emma napped too. I could have gotten many things done then, if I hadn't also fallen asleep myself. :P This afternoon was naptime for everyone, I guess. It's already dark now, which is kind of a bummer. What happened to my day? Oh, well. Time to write my drabble. Lucky 13!
matril: (Default)
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.


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