"All these things I should keep to myself
But I feel somehow strangely compelled...."

- Neil Finn, Sinner

Lessee, what lately...

• I donated blood again Friday. When I pulled up to the park, the police helicopter was hovering directly overhead and shining its floodlights on the front door of one of the apartments in the complex across the street. It was really low, and people were standing outside the complex and the park building, shading their eyes in a "WTH?!" manner. There were no police cars on the ground or in the vicinity as far as I could tell. runsamuck tells me they will often focus the lights on one thing as a distraction while they are using the heat sensors (or whatever the hell they have) on something else.
  
  
  
  Lake Park
  Huntington Beach CA
  Casio EX-Z80A
  27 February 2009
  
  
  
  Another man and I were the last people there; although all the staff were polite and still trying to joke around, you could tell they were tired and anxious to get out of there. The nurse cleaning my arm was scrubbing so hard with the iodine swab it felt like she was using sandpaper. Then the jab seemed quick enough but my elbow felt sore for the rest of the evening. Equipment was being broken down and packed while we were lying there being drained. However, after we were done and had sat sipping juice for our requisite 10 minutes, they told us we could take as many snacks along as we liked as perqs for being last of the day. I grabbed a package of cookies for each of the kids. I wound up going to sleep much earlier than usual just because my arm was achy and I could not make it comfortable. I still have a bruise.



• Avalon came home from school last weekend with a temperature, and not really any other symptoms last weekend. It faded over the weekend, but then she started complaining of sore legs, so much so that she was barely able to walk. She thought she felt well enough to go to Dismalland Sunday evening, but after two rides she did not want to walk anymore, and kept wanting to sit down. runsamuck took her to the doctor again, and they couldn't find anything wrong, but had her bring back a urine sample to make sure of anything else. She couldn't manage it herself and he wasn't allowed to go in the restroom with her (this presaged a whole rant from him once home, on how if he were a single parent he wouldn't be allowed to help his daughter buy clothes - father's rights really being one of his sore points). Anyhow, she was nearly in tears walking to class the next couple of days; it finally faded but we're at a loss to figure out exactly what caused it - she swears she hadn't done any exercise to make her legs that sore. And really she's the most active and athletic of our kids, so stuff like that usually wouldn't bother her.



• I went by myself to Angus's IEP, because one of us had to get the other two fry ready for school - I wish we could both go, because runsamuck is much better at coming up with questions than I am. However, I take better notes than he does. Angus has been making progress on all of his goals, although he's still behind in math, which is frustrating because it used to be one of his better subjects. His writing has improved dramatically, which I noticed on a social studies project on Native Americans he had done (which really he only got marked down on because he didn't label some of his illustrations). One of the goals, using cartoon bubbles to describe what characters in a story were feeling, was not made by the teacher who was supposed to be applying it and she didn't really understand how she was to go about it, so that one was going to be modified. I know he reads better than he lets on; I know this because he knows all kinds of random facts on his favorite topics (notably Bionicles), which I know he's read off one website or other. However, at home he'll come and ask me to read something to him, when I know darn well he can read it himself; then he makes frustrated noises when I have him read it to me. Also, he often spends recess in the library (so he doesn't have to interact, so it's quieter?) and they are trying to get him to interact more - which makes me think of this blog entry by an autistic person and this one as well. I don't know that the same thing is occuring with him, but I know I sometimes feel like I'm slogging through syrup when I'm expected to be a part of a conversation - either things don't occur to me or some one else will get to it just before I open my mouth to say the same thing. It's better just to listen, sometimes. In any case, there is supposed to be another IEP before the end of the year to meet with his upcoming middle school teachers, since he'll be in sixth grade. I think it'll be nice that he'll be closer to home, and that there will be people from his old school that he knows, that he's missed, may make some things a bit easier for him.



• Been seeing Western bluebirds around the office again; I think this is the third year in a row. I didn't even realize we had them in this area before I saw them here, but I'm told they always have been. There were two great blue herons on the lawn as well, hunting gophers. One of them must have been a juvenile, as his plumage didn't look quite so sharply defined between gray and white.



• I have really got to get to work in the yard...(and the house, and our room, etc. ad nauseum...)

...returning you to your regularly scheduled ELJaying...

I drove in to work today (school starting and getting the kids ready in the morning this week has thrown me off my bus schedule), and listened to Kevin & Bean on radio. I only get to hear them once or twice a month anymore, and frankly, don't always want to listen because, like many morning shows nowadays, rudeness and crassness are mistaken for funny - this mostly comes from Ralph Garman (and before him, Adam Carolla, before he moved on to bigger and better[?] things), although Kevin usually joins right in with it. They were talking about how Bean had been boring everyone with talk of his upcoming vacation to Finland, and on the day he was supposed to leave he got the the airport and discovered he had an expired passport, so they wouldn't let him on the plane. Whereupon, Ralph said, "This is where Bean's Asperger's kicks in," and talked about him obsessing over every tiny detail of his trip - not the least picking Helsinki as a destination, because who in their right mind wants to go there (not even his wife)?! -and then spacing on the major detail of having a valid passport.

I was a little taken aback to hear Asperger's mentioned. Six years ago I had never heard of it, until someone mentioned it in a blog, and then a few years later, my son is in special education because of it. Has Asperger's really become so mainstream? Bean (so nicknamed because he's a beanpole of about 6'6") and his partner Kevin have been doing this radio show for more than fifteen years, and the constant running joke among the morning crew has been Bean's quirky behavior and odd interests; anti-social (he actually does the show from his home in the Seattle area because he can't stand crowded Los Angeles), surrounds himself with animals, has fascinations with things most people would consider rather strange (visits every 7-11 in every city he can possibly get to and studies their floor plans, and has a curious admiration for the postmaster general). He's in his forties and still signs his name with an accompanying smiley face. The rest of the crew give him a hard time for (sporadically) keeping a blog, because who could possibly be interested in what he has to write about? FYI - the domain is named for the discoverer of Pluto, another obsession of his - I read it, and it's no more or no less normal or obsessive than most other bloggers, probably less because for the second time now, he's given up on it.

I found some archived bits of the show, and listened to them; Bean is in complete denial, which I guess I can understand, however, I really don't see it as a bad thing. I always kind of identified with Bean, because I've been considered to have some strange interests and not considered really normal by most of my friends, too. And I suppose I have a soft spot for him, because he hugged me once.* I wonder how much is real and how much is affected, because he makes a good foil for a morning drive time radio show. I also wonder how a supposed Aspie, notable for social difficulties, got into broadcasting - although VT pointed out to me, it's radio, fairly scripted, and he has partners who support him. And he seems to be valuable enough to the show that they let him move to a totally different part of the country and pretty much telecommute. I'd say he's doing pretty well.

I guess this could also be filed under an "It's not an epidemic..." tag.
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*Before I got a permanent job where I work now, I took a job as a fisheries observer and lived in Portsmouth NH by myself for about eight months. I came home to my parent's over the holidays, and spur of the moment, decided to go to one of their signing events for the holiday cassette they used to put out (it was still a cassette at that point, not a CD). When I finally got up to see them, I blurted out "I had to move to New Hampshire six months ago and I have missed you guys SO MUCH!" Where upon Bean said "Aww, now that deserves a hug," came around the table and gave me a big one. As someone single and a bit lonely at the time, a hug from a tall, somewhat cute, locally-famous guy felt pretty good.

For the first time, the fry and I attended an "Event Cache" - where a bunch of local geocachers get together at a certain point, and some bring things call "travel bugs" and "geocoins" to exchange - these are items or coin-like things with unique number codes, which are supposed to be moved from cache to cache, sometimes with a specific goal in mind ("get Nemo the Fish from the Atlantic to the Pacific"). I got to meet quite a few people who I'd previously only known by username.

Wherigo hint
Newport Beach CA
Sharp VE-CG30
12 September 2008

The above was a major hint from a new kind of cache called a ( Wherigo... )

Parallel Play - A lifetime of restless isolation explained

Great article on living with Asperger's in The New Yorker.

I especially like these quotes:
~

In the years since the phrase became a cliché, I have received any number of compliments for my supposed ability to “think outside the box.” Actually, it has been a struggle for me to perceive just what these “boxes” were—why they were there, why other people regarded them as important, where their borderlines might be, how to live safely within and without them.

~

Caring for inanimate objects came easily. Learning to make genuine connections with people—much as I desperately wanted them—was a bewildering process. I felt like an alien, always about to be exposed. Or, to adapt another hoary but useful analogy, not only did I not see the forest for the trees; I was so intensely distracted that I missed the trees for the species of lichen on their bark.

~

The class work, hardly less humiliating, was at least more private. If I wasn’t deeply interested in a subject, I couldn’t concentrate on it at all—those dreadful algebra classes, those Bunsen burners, the mystifying and now deservedly extinct slide rule! Late in each semester, when it became obvious to me that I had no idea what I was supposed to have learned, I’d attend some makeup classes and try desperately to pay attention. As the teacher rattled on, I would grind my teeth, twirl the tops of my socks around my index finger—once I poked myself repeatedly through my pocket with a pin—anything to keep my mind engaged. But it was impossible: a leaf would fall outside the open window, or I’d notice the pattern of the veins on a girl’s hand,or a shout from the playground would trigger a set of irresistible associations that carried me back to another day.

And then the dream was ruptured by the sound of a bell; the class was irrevocably over, and I knew no more about quadratic equations or beryllium than I did an hour before. Failure was now assured, and the count down began to the Dies Irae, when my report card would land me in trouble again, for my father was incredulous that a boy who blithely recited the names and dates of the United States’ Presidents and their wives couldn’t manage to pass elementary math and science.

Dear senoritafish,

www.autism2006.org

Just to let you know that all the papers in our online autism conference are now open for viewing to give you a chance to read them before the authors come on line when the conference opens tomorrow, October 4.

Please tell all your friends about this invaluable, free opportunity to put questions to more than sixty of the world's top autism experts.

Best wishes,

Adam Feinstein

________________________________________


AWARES Conference Centre
http://www.awares.org/conferences

The All Wales Autism Resources (AWARES) is sponsoring their second annual Online conference on the Autism spectrum for target audiences of:

People with autism or Asperger Syndrome (or people living with them)
Parents
Teachers
Social workers
Probation officers
Police officers
Medical professionals
Care professionals
Researchers

Basically for anyone who may have dealings with autistic people - and given the rise in autism diagnoses recently, that could be almost anyone! Topics include:
( Read more... )

Darn, meant to post about this awhile ago.

There's an online conference on Autism/Asperger's starting tomorrow at:

http://www.awares.org/conferences/

One of the "speakers" is Tony Attwood, who wrote one of the first books I heard of about Asperger's. All the speakers will be available at certain times to answer questions.

Angus got extremely upset last week when he heard the school library was closing down for the summer. John got a bright idea that he suggested to the principal and the librarian, and they were all excited about it. He called me at work, and had me make up a "Junior Librarian" card, which he had laminated with Angus's picture. Then they had a little get-together in the library and presented him with his card and let him pick out a book to take home over the summer (we paid a deposit on the book in case something happens to it). I came home yesterday and he was all excited to show me a book about Egyptian mummies that he had chosen. I told him he needed to keep it on the bookshelf when he's not reading it, and away from his sister. He's very excited to be reading it over the summer, although, sometimes I wonder if his interests aren't a little morbid.

Yesterday, I could not get him to let go of me when dropped him off at his classroom. He had been looking in the American Science and Surplus catalog, and seen this scorpion, and wanted to show me a tarantula in his classroom that was similarly mounted. However, he didn't say that, he just kept holding on to my arm as I was trying to leave, and getting more and more agitated. Luckily, the thing was right inside the door on a table, so he grabbed it and showed me. Then he was fine to go into class.

Two meetings recently about Angus - one on Tuesday with Angus's IEP team, luckily a short one. Because of Angus's difficulty focusing, they are going to try a part time aide for 2.75 - 3 hrs per day. There is another child at the school who can use one, and they think is a good time to hire a person. The person will kind of interact with the entire class but is there to keep Angus on track when he needs it and redirect him at recess when he starts going off by himself to gallop back and forth at the far end of the playground. Mr. A., the pricipal, told John what was going to be discussed ahead of time, so John was grateful that he had some idea what the meeting was going to be about - something he's had issues with since this special ed process started. He's always felt all the educational staff know exactly what the meeting is about and have agreed on everything before it starts, and we're just in there to sign a paper and go along with it. Luckily, much less stressful this time.

About a month ago, we attended meeting with the West Orange County Consortium for Special Education for parents with a newly diagnosed child, and I think a conversation John had there helped too. One of the other parents attending was not only a mom with an autistic child, but also a special education teacher. I really felt for her; she just gotten this diagnosis, her husband had been laid off, and she was faced with possibility of the school she worked at closing. John put to her some of his ideas about the IEP meetings, and she responded with "You are the type of parent who frightens us." She continued with, "Believe me, your son's teacher and the staff at the school are doing everything they can to get more help assigned to him. The teacher is the last person to want to throw roadblocks in the way. If it was me I would be lobbying as hard I could, because it's very difficult for me to teach a class when I have stop every five minutes to get little Timmy out from under the desk, and put Jennifer back in her seat when she starts wandering around the room and waving her arms." I think that made him see things from a slightly different perspective. And as I said before, most people with AS children have a problem getting schools to see their child does need extra help.

That particular meeting was helpful to me because I was finally able to get an answer about the difference between the school district's evaluation and a medical diagnosis. We've been to a neurologist once, but it seems it takes several visits to make a conclusion. We're not supposed to go back again until June. When I asked the meeting facilitator what the difference was, she told me that the district's evaluation is mainly a criteria for providing services. A medical diagnosis may or may not conflict with it (I want one mostly for some confirmation - it's not like there's a medical treatment for it), but even if it does, services will still be provided. That was a bit of a relief. It was also a relief (a somewhat guilty relief) knowing that Angus's condition is relatively mild compared to many others whose children are not even talking.

Went out at lunch to get the book for my book group; typical of me, buying it the day before we're supposed to be talking about it. John seems to begone every time I think about going, and I just haven't felt like chasing three 6-n-unders all around Barnes & Marmoset. Every time we all go, I have a difficult time prying one or more of them away from the trains in the kid's section. This month it's Green Rider by Kristen Britain. Looks like typical escapist fantasy, which is fine by me.

The book for December was The Sparrow by Mary Doria Russell. Man, was this a rather harrowing read, since the book starts out telling of a first contact mission gone horribly wrong, and a Jesuit priest is the only survivor. As his superiors try to wrangle the story out of him,the tale is told by alternating chapters between the present and the mission. Since you know at the beginning that only Father Emilio survived, you are waiting the entire book for the inevitable to happen. I'm not sure it's worse to be taken by surprise. There is a lot of speculation on faith as well - the author describes the book as her coming to terms with her own experience of being raised Catholic, spending 20 years as an atheist, then converting to Judaism. As an agnostic (I don't quite have the courage to declare myself atheist), I was bothered a bit by most of the characters motivations, i.e. "this is so obvious, it can't possibly be coincidence - God must want us to do this thing." However, the author said it was sort of an experiment into how modern, intelligent people could still manage to screw up a first contact mission, just as Europeans did in the past with native peoples. Anyway, it was interesting.

Also picked up Pretending to Be Normal by Lianne Willey. Hmmm, she has a variation of my name. I have been looking for books on Aspergers every time I go to the bookstore, but when they arrange them by author instead of subject, then author, it makes them really hard to find unless I have titles right in hand. I really should make time to go to the library to find these things.

Ol' Deadwood Bob was generous this weekend. He took Gareth off to the grocery store with him and came back with a bicycle, something I'd been thinking it was about time for, but we haven't had the cash for. He put it together on the patio, and after John made a few final adjustments, took it out front and let Gareth try it out. This one came with training wheels, but the way he's been zipping around on it, I have feeling they're not going to be on there very long.

( Gareth )

The grandmas dropped Angus off about this time so he had to try it too, but he couldn't find his regular bike helmet, so he grabbed the one he wears for riding to school with Dad on the scooter. The seat was too low for him, so it was pretty awkward.

( Angus )

We had thought the boys were going share this bike until we could get another one, but Dad decided Angus need his own, I guess. When I got home from work on Monday, there was another sightly larger bike of the same style sitting on the patio. This one didn't come with training wheels, so John took off immediately to get a pair, which he spent most of the evening installing with much accompanying cursing (kids would not stop pestering him).

Last night I went with them so Angus could test drive his new bike, and went around the block and up and down the alley. Some of it may be that the bike still needs adjusting, but he's having a much harder time getting his feet coordinated with the pedals. Most of the time, we hardly even think about his differences, but with something like this it shows up more; he gets frustrated easily and we have to be extra patient. Oh well, he's just going to need more practice than Gareth. I did too, for things like this.

This is a worry of mine. Though Gareth is younger, he seems likely to outstrip Angus in physical things, anyway. Although he's not inacapable, I'm afraid Angus is going to see his brother doing better and more quickly than him, and get discouraged. By the same token, I don't want to belittle any of Gareth's efforts just because of Angus's abilities. How to balance it?

Oh well, let's not burn that bridge before we come to it, hey?