New and re-recognized stuff

Every once in a while, I see something that Rose does that gives me a fresh sense of dismay that I didn't recognize what was going on with her earlier in her life. If only I had realized her difficulties earlier, I keep thinking, I could have helped her along over some sticky parts of life, taken steps to make sure her public school experiences were less overwhelming or negative. At least that's what I keep thinking, realistic or not.

She's been a little high-strung the past couple of days, as I've mentioned. Just a little while ago, a piercing shriek alerted me to the fact that she'd found a spider on her pillow. She came running into my room with an expression of complete internal focus, grabbed the edge of my robe as it was laying on the bed, and began rolling the edge of it with her fingers in a ritualistic way while she explained the spider situation. She did not look at me.

That gave me a slight shock. When she was a toddler, she used to rub her fingers along the edges of her blanket in just the same intense way. I just had thought, well, that's how she is, and made sure that she could get her blanket when she needed it. I never thought for a moment that it was some kind of sensory ritual, or rather, I never thought of it as something unusual. So is it, really? How is it unremarkable at two and eye-opening at eight? And further, is it really eye-opening at eight? Do neurotypical eight-year-olds not do this? I suspect not for any number of reasons, but I'm not completely sure.

Rose's grandmother keeps asking if Rose is "getting worse," because to her, it seems that's so. I keep trying to explain that it just appears to be that way since behaviors that were OK for a young kid aren't for an older one. I keep finding situations or behaviors like this one where she has not essentially changed since babyhood, and I keep being shocked at their new interpretation in light of her autism.

I do think the toewalking I mention in the last post is new, though. I don't really remember her toewalking at any point in childhood prior to this. Sometimes I really don't know what to think - or what to do, if anything.

Back to (Home)School

Today has had so much packed into it that it feels like it's been at least two days. We've had a fairly quiet summer. We've done some art projects and had some low-key fun, including a fantastic picnic with the local Asperger's society. And now we've had a hectic couple of days, with a visit from Rose's cousin yesterday and the official start of the school year today for both Rose and her sister.

Rose's quirks all rise to the surface when she's stressed, of course. Some of them are relatively innocuous, like finger-flicking and toe-walking, others become more obvious, like withdrawing or not being able to register someone talking. Then there's the panic attacks and emotional explosions over things like... clicking the link to the wrong video on YouTube, or the fact that the screensaver went on.

But overall, I have to say that this is really damn mild anxiety compared to say, starting a new school year at a public school. And in fact, some of the anxiety Rose is experiencing now, I believe to be linked to the emotional triggers of "starting school" from the past couple of years. She freaked out over clicking the wrong link to a video because she felt as though "everyone" (?) knew that she messed up again.

Very, very fortunately, this particular video we were about to watch was Phil Plait's piece for kids on scientific methodology - and how science is about trying things out, including being wrong and correcting oneself. It made for a great support to say, "It's OK, even scientists (like you want to be!) make mistakes or are wrong, it's completely expected, and in fact mistakes are great, because you get to learn from them."

We ended the school day with a distinct sense of satisfaction. And some ice cream, of course.

Medical ID Tags

Today, Rose and I went to the county fair. What a blast! But entirely a hairy experience - crowded, noisy, overstimulating, full of unpredictability both good and bad. Rosie was having a ton of fun but was also pretty agitated. She kept darting in different directions in the crowd and could not hear me at all. If I put a hand on her to guide her, she flinched or skittered away because her senses were so keyed up it felt like I was clawing her. She's gotten too big to hold her hand, partly because I can hardly hold her - she's too strong.

It was getting pretty grim, but I spotted a set of dog tags in an engraving stall and wondered - why on earth hadn't we done this before? I had them put the usual name and number on it, then on the bottom line, "PANIC ATTACKS / AUTISM" should she find herself lost and freaky and incoherent.

She seems a little embarrassed but also relieved, saying they were like a safety net. Now I feel guilty and unsure. Was I right to put "autism" rather than "asperger's" so that emergency personnel would treat her according to a - hopefully - more familiar protocol if she was having the screaming heebie-jeebies? She does seem OK about it - but I worry about the more subtle effect of what I've done. Did I just hand my otherwise articulate and capable kid a big metal "incapable" label?

oh, augh.

Pros and Cons of School at a Distance

Yesterday, I found Rosie making imaginary friends. She was coloring pictures of kids and giving them names. "These are the students I hope to have, when I'm a teacher," she said. I thought about it, and it seemed to me that when I'm a teacher sounded more like if I had status in school. "What about schoolmates?" I asked. "Yes," Rosie said, "these are the students I hope I would have in my class." "If you went back to school?" I asked. "Yes, if I ever go back to school."

Naturally I am squirming. This is my fault. At this point I am doing exactly what I didn't want to do - isolate her. And it's not necessary, either, since there are so very many homeschool groups. I just have been struggling to balance the new pattern and have not stepped out to find social opportunities fast enough.

I asked Rosie if she thought she would ever want to go back to regular school, and what the good and bad parts of school were. "I miss the playground," she said. "All the kids playing at once." This surprised me, since she typically played on the edges of the playground without anyone. "And I miss my friend." This is the one friend she made, a kindergartener. I haven't tried to maintain the friendship for her because the other child is so young. "The bad parts are that I have to concentrate, and I get distracted all the time." Yes, I tell her, if you're distracted a lot, then it's hard to concentrate.

"Also I hate math." This one makes me grin - so typical a kid's comment, even from someone who was getting awards in math despite everything - but then I realize it's related to the other bad parts - being distracted and having a hard time concentrating. At home, she studies math hanging off the couch upside down, sometimes in Japanese. Which... helps her concentrate. Math is an enormous pleasure for her when approached without stress, and she does very well. I don't see the elementary school putting up with that.

Rosie's dad insists, and I still do agree, that we have done the right thing in removing her from the ultra-stressful environment of public school. What we haven't done right YET is make sure the social bases are covered, and the theraputic bases.

Asperger's in Higher Ed

As a higher ed developer and instructor I'm naturally interested in, and concerned about, that transitional period into adulthood. I may not like all of the direction of the coverage about the 'rise in autism,' but I am definitely glad it's raising the awareness level of instructors everywhere. I found an article by a professor at the University of Alabama with an interesting slant - without working with the school's disability service, and without any declaration from his student, he perceived that his student needed a different approach and attempted to adjust his teaching accordingly. Not all instructors can be bothered. Kudos to Stephen Yoder!

http://www.insidehighered.com/views/2008/07/07/yoder

Anxieties

I've been concerned about Rose's anxieties, which I'm realizing really impair her day-to-day functioning more than anything else does. Whether it's a bug, or a new game, an automatically-flushing toilet, or some idea she latches onto, these anxieties whip up into nervousness and agitation and then she starts to cry or tic or otherwise panic. Even if the initial trigger appears to settle down, she's already in a state where she cannot concentrate - every noise, every sensation gets blown out of balance - and everything distracts her.

It gives me some insight into why she's done much better being homeschooled. What concerns me about that, though, is knowing that she probably isn't getting enough exposure to situations that enable her to practice functioning despite her anxiety. Right now, school is far too much; homeschool is probably too little. Where can I find a medium, without currently being able to afford insurance and therapy? This is a real dilemma.

I recently have been hearing from parents who either do or do not medicate their kids on the spectrum for anxiety. The idea of medicating her makes me panic. How, again, will she learn to cope with her own emotions, even a little bit, if she's medicated? How will she be able to use the powerful creativity she has, if her brain is dulled? What are the long-term effects of this kind of medication on kids' development? It makes me ill to contemplate it.

Parents I hear from say that kids have to want to learn to deal with their anxieties for cognitive therapy to work. I'm not sure she has that kind of insight yet, but if she doesn't, she's close. We've been trying to work to objectify and control "worries" but this doesn't work during an episode. She does not want to breathe, or count, or visualize stuffing worries in a box.

And, though I dislike myself for saying it, it is getting increasingly difficult for me to cope with her anxiety attacks. Her reactions appear to be perfect triggers for me to get agitated - which, intellectually, I know is a normal response for everyone, but it makes it very difficult to help her if I'm agitated. My ability to respond calmly depends almost entirely on my own anxiety level and hormone cycle. I think I need to find some assistance in finding ways to help her, somewhere, somehow.

Careers

"You know what I say about business?" Rose asked me over lunch. "Everybody is a consumer, but not everybody is a producer."

"Wow, that's pretty insightful," I said. "Did you just think of that yourself?"

"Yep," said Rosie. "I always try to look on the bright side."

"So what do you want to be when you grow up?" I asked.

"The direction I'm leaning in right now is trapeze artist," she said.

"But then you wouldn't be a producer," I said, "unless you consider that producing entertainment for others to consume is being a producer."

"No," she said thoughtfully. "I'm also leaning towards directing movies or stage plays, though."