One Year Later

It’s been about a year since the school and pediatrician determined that Rosie’s autistic, and I at least seem to have gone through the process I expected. I knew there would be a wave of assimilation and identification with the new reality to go through, perhaps some anger… stages in the process. And so there has been, but I feel lately as though I’ve come through it and am looking at it in a more matter-of-fact way, so I conclude that this initial period is over.

At first, there was the initial surprise and rejection that I know Rosie’s dad and I both went through – the whole family, in fact. How could her character traits and behavior possibly be labeled autistic? She was just like her dad and I, just a little more so. Following an intense period of research, we realized that of course the traits we shared were actually characteristic in their pattern, and Rosie and her autism became the lens through which we scrutinized our family. Rosie’s dad acknowledged that for some time, he had recognized that she was exactly like he had been as a child, but without identifying it as autism. Since his childhood had been traumatic, he had been trying to protect her, and most of all, not treat her like his parents had treated him. (In this, he has been profoundly successful.) It took me longer to realize that my own childhood traits followed a similar pattern.

Looking at my wider family, for a long time, I had already been aware that the men in my father’s family had something a little odd going on that usually landed them in a great deal of trouble around adolescence. I had actually looked at the autism criteria several times over the years with my brother in mind, but kept dismissing it since his traits weren’t strong enough to be classic autism. Plus, my brother is athletic and I thought at the time that all autistics had motor control difficulty. I found autistic traits in so many of my relatives that I started to worry that I was overapplying the criteria and seeing everything as relating to autism. However, even with a cooler perspective, I can see that the pattern of traits is still there. It’s as much a part of my family’s genetic heritage as our shared bone structure or blood type.

In seeing autistic traits as part of a continuum of human behavior, I went through a period of anger at the way the rest of the world viewed autism that told me that I was identifying pretty strongly with it. I’ve always had this me vs. them resentment; in some ways, this was just another way to fuel it. I don’t think that this anger is over, to be honest, only that this week I’m not feeling it.

This week, this is what I feel: so what? Autism explains my eccentric family. Some of the family members have a diagnosis, some are not about to go get one, some are misdiagnosed, some are subclinical for Asperger’s and are only missing a trait or missing a matter of degree. To my knowledge, no one has a diagnosis of classical autism. Same for my husband’s family, and same for several other families I know where one or more members have an Asperger’s diagnosis, though classical autism pops up in other families with this pattern. To me, that is really a strong indication that the autistic pattern, in humans, is effing normal. It’s part of the range of possible characteristics, and once enough genetic research is done, we’ll likely find that there are other patterns of characteristics other than autism that are triggered by strong genetic combinations or by external factors, too. So… so what? Let’s just get on with being brilliant, and weird, and obsessive, and cranky, and antisocial.

3 Things to Think About

I am surprised, again. (By so many things, LOL, but here are the 3 for today.)

The other day, my older daughter failed to recognize her uncle, an aspie, in a public place even though she actually interacted with him. This was distressing to him, of course, but hardly less distressing to her! I related to her a couple of similar instances of my own; one where a programmer friend and I missed each other when we planned to meet, though we apparently sat next to one another while waiting; and reminded her of another frequent happening where my family members don't see me moving around the house, if I'm doing it when zoned out and intensely preoccupied. So today, in clicking through the links of a psych researcher in Wisconsin who is championing neurodiversity, I found a blog with a link reading "Autistic Superpowers: Invisibility." I clicked, and assumed it was referring to social invisibility or invisibility with regard to healthcare - something more political. But no, it was about exactly this phenomenon of being not present, or being overlooked...

http://aspergersquare8.blogspot.com/2007/08/autistic-superpowers-invisibility.html

The second surprise stemmed from an excited call from my father about a newspaper article that referred to measurable auditory processing delays being absolutely correlated with autism. He related it to his ability to take a continuous string of auditory input and process it accurately with a long delay period. I ran across a different article today that probably refers to the same research:
http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=20307

Dr. Roberts and his colleagues have found a slightly different pattern in the magnetic activity from the brain in children with autism spectrum disorders (ASDs) than normally developing children. “Children with autism respond a fraction of a second more slowly than healthy [sic] children to vowel sounds and tones,” Dr. Roberts was quoted as saying.

No comment on that "healthy children" business. No, wait, I am commenting.

The third surprise was another article, reporting on an upcoming publication from researchers who claim that a low frequency magnetic field around the brain can relieve hyperactivity and sensory overload in autistic people. (Interestingly, reported in a business journal first. A marketable therapy, of course.)

http://www.bizjournals.com/louisville/stories/2008/12/01/daily12.html

“Our results are preliminary, but they show a great deal of promise in reducing the severity of symptoms that people with autism find most distressing without affecting areas in which many autistic patients are gifted,” Casanova said in the release.

While I'm relieved to some extent to see this researcher's sensitivity, I have to still consider symptomatic treatment with some trepidation. There are areas where people who are hyperactive and hypersensitive have powerful advantages - read any of the business research on hyperactive entrepreneurs, for example. I worry that overzealous parents will rush to desensitize children who could learn to manage and benefit from their gifts.

Not that I've achieved anything appreciably beneficial with my own sensory sensitivities. (Unless you count being able to smell rattlesnakes, which I think has been a definite evolutionary advantage for my genetic line...) I wouldn't want to desensitize even my hearing, though, which is what gives me the most trouble. It makes a lot more sense to carry earplugs and avoid painful stimuli.

Post-Turkey Reflection

On the principle that I should not have to medicate myself to get through a holiday, we opted out of hosting or attending a family gathering this year. The most pleasant Thanksgivings I remember have been ones where we have enjoyed the holiday in some alternative fashion - turkey sandwiches and a bonfire, going to an amusement park, etc. We chose the amusement park option this year and had a pretty good time. My older daughter, who had to work and so stayed home, reported that my family members showed up at our house anyway, ate the turkey we had cooked for lunch, badmouthed us for a while, and left, but hey - at least Rosie and her dad and I weren't there.

I love the hypocrisy. It's OK, apparently, for my family members to opt out of attending stressful large family gatherings, but it's not OK for me to opt out of hosting a smaller, though equally stressful one.

Rosie rode the kiddie rollercoasters over and over, until I noticed she was toewalking and looking a little wild in the eye, and figured we needed to decelerate a bit. She had a good time.

Cranky and Reclusive is Just Fine

Well, Rosie was in a state of nervous exhaustion after the Scouting and art show events, and the poor kid kept crying out and shouting in her sleep. We let her retreat into her room for the morning and early afternoon the next day, and then, after that, she was fine. She popped out cheerful and interested in the world and ready to talk and play and learn. Contrast that with how it would have been if she had to get up early the next morning and meet the demands of six hours in the public school environment. A meltdown or two, a fight, a trip to the principal's office, a wasted day, more negative reinforcement regarding school, and another day or two or three of nerves and shouting - that would have been the minimum. You tell me what's more natural and healthy.

Anyway.

I'm in a bit of an irritable mood myself, after listening to my aunt rant about how my father and her other sister are "wierd" for avoiding family gatherings and refusing to share every detail of their lives with family. The most maddening part is that she thinks there's 'something wrong' with her siblings for being reclusive, yet there's 'nothing wrong' with her and her daughters (all medicated for anxiety disorders), two of her grandsons (medicated for unspecific "psychosis"), three other grandkids (medicated for ADHD), and two great-grandkids (3 years old and not talking yet). What. The. Hell.

There are obviously a range of traits in this particular family, and combined with other traits from other families, they manifest in different ways, some of them disruptive, some pathological, and some not. This is not different than millions of families - from any human group.

I'm just infuriated. Where does anyone get off thinking that they can pick any set of characteristics - someone else's, not their own - and decide they're maladaptive? That goes equally for a school system which decides that a kid can't take a break from interacting with people in an overstimulating environment as a matter of course, and for an aunt who can't accept that another family member might not want to interact with people under a similar set of overstimulating circumstances.

I am not playing Thanksgiving this year, damn it. I WON'T.

Night and Day

Today, a very busy day, did a complete flip from my perspective. This morning, my head was really bad. I haven't been able to organize my way out of a paper bag all week, and levels of anxiety (everything!) have just been escalating by the hour. As I dashed around trying to put together last-minute critical supplies for a Scouting event, I wasn't sure what direction I'd take: scream? faint? cry? throw something? run in circles and smash on the wall? have a stroke?

No. All of those options seemed counterproductive and actually my head was thudding in such a way that I was actually a bit worried about that last possibility. .25 mg of xanax seemed in order.

An hour later, the Scouting event was still hectic and the noise level made tears come to my eyes, but it was manageable - no, more than manageable, it was very enjoyable. But a tad hectic, definitely. Imagine six girls and their siblings, with about two-thirds of the kids somewhere on the spectrum, desperately excited over an important Scouting event. That means three kids screaming either in excitement or distress or both, two kids under the table holding their hands over their ears, another two handflapping so hard I thought they might levitate, one totally checked out, humming to herself and spinning something (mine), and an older sister, theoretically neurotypical, quietly eating her little sister's floral bouquet in the corner (also mine). At that point we had also lost my husband; after two months of a gluten-reduced and nearly dairy-free diet, he was in the bathroom throwing up after eating a slice of pizza. That'll teach us to be the only family in the group who blew off dietary restrictions. Everyone else brought food from home. Fortunately, we had gotten through most of the ceremony before this was the scenario-at-a-glance.

I can't say that I was 100% at the Scouting ceremony; I started the proceedings, got the girls through the GS Promise, began to talk about why we were gathered... and promptly derailed the whole conversation into mathematics. I am still laughing. I don't know how it happened, exactly. I asked the girls how many badges they all had earned, and it turned out to be four each, which they all started to add up for a total, and suddenly the talk took this extreme left turn into multiplication, then factors of four, and then ... then there was shouting, and I was sitting there thinking, "Wow, I have really lost control of this situation," and then a couple of the other moms yelled "Time for the candles!" and got that going. Saved. Whew.

In the evening, there was an art exhibit and event. Rosie had wanted to look for her entry on the wall, do some crafts, listen to some music. But she was too wiped out from the earlier event to want to go at first. Eventually, she decided that she didn't want to miss out on music, and the two of us dragged ourselves there. It was a complete zoo, a total madhouse. About a thousand people crammed in a small space. She had a couple of mini-meltdowns, but we also enjoyed trying out new art techniques, and were able to leave with a tolerably good feeling.

Though we were both exhausted, Rosie and I wanted to eat some healthier food than the leftover pizza waiting at home. So, since Rose was having a craving for laad naa, we went to a Thai place we hadn't tried before. And this is where the evening smoothed out into the crown on a lovely day, as Rosie put it. The restaurant was quiet, with only murmuring conversations, the splash of a fishtank, and the tinkle of soothing music in the air. The seating was comfortable, the lights were low... we had each our favorite comfort food (laad naa for Rosie, tom kha khai for me) followed by luscious khao neeo mamuang. "I don't want to leave," said Rosie. "This is just so nice!" We just felt terrific ("A new me!" said Rosie.), and figured that the healthy food helped, but that the soft music was the best thing.

Ahhh. In any case, evening definitely 180 degrees from morning for me.

And Peaceful Days Too

A pleasant weekend day, at least. Model trains, a walk on the pier. The ocean was very soothing, even with the excitement of a fisherman managing to hook a thresher shark. The crowd's behavior was interesting; everyone trying to catch everyone else's eye and say something about the event. Everyone followed the fisherman up and down the pier as he worked on getting the shark in.

We were enjoying the excitement when a girl about twelve years old came up to us and said to us "It's a long tail!" There was a family pause, where I know we were all thinking something like Long tail? She sounds like a character in a movie about the Stone Age. "Thresher shark," Rosie's dad and I both blurted out. "The thresher shark has a caudal fin as long as its body," Rosie observed. The girl blinked at us for a moment and turned away.

Naturally.

I'm sure if one of us had known the scientific name for the thresher shark, he or she would have blurted that out, too. Sigh.

Girls & Asperger's

Posting while listening to Rosie and her grandmother have their morning argument. Very unpeaceful. It's always something. They're about equally pigheaded each in her own way.

Anyway. A quick post, since I'm out of time this morning.

A friend sent me a link to a Newsweek article "Why Girls with Asperger's Might Not Be Diagnosed." http://www.newsweek.com/id/168868/page/1 I'm glad to be seeing much more attention being given to the differences in thought.

And, I finally did get Attwood's book Asperger's and Girls, though writing about it will have to wait a bit. I had about the confusing reaction I expected - sometimes upset, sometimes grateful. There are a lot of things I'm going to need to remember to tell Rosie as she gets older, and I'm very glad to have some input there.

First Day of Holiday Wigging

Well, gosh, I'm on time. I tend to start to freak out about my least favorite holiday right around two weeks prior, so I'm right on track for a total meltdown around Thanksgiving.

Yay.

Last year, I Xanaxed my way through it and sharpened my teeth some (this was before I got my mouthguard to prevent my grinding all my teeth down in my sleep). I couldn't get my crap in one sack quickly enough to figure a way out of Having A Lovely Family Thanksgiving, so I capitulated and wasn't that nice. This year the sense of tension and obligation is already racked up pretty high for various reasons, and I figured unless I wanted to find myself freaking right the eff out, bolting out of the house, and finding myself in Alaska or even Siberia before I slowed down, I'd better make a plan.

So, escape plan in place, things have calmed a bit, but I still feel pretty jumpy. Rosie and I spent a quiet evening playing card games. One round of SET and two rounds of another game, Lie Detector. She can play through a round of SET now, but it still gets on her nerves a bit. Lie Detector is actually far more complex in its way, but she has a special interest in detection and mysteries, so... there you are. Rosie commented (for maybe the hundredth time) that she thought she might like to go into law enforcement when she grows up.

I could see her doing that. Detective work! Anything that requires analysis, really. I remember Easter several years ago, when she gathered evidence quietly for a week or two, then presented it to us in a verbal bullet-point style to prove definitively that her dad and I had to be the Easter Bunny. She detailed each item with chopping motions of her hands.

1. She saw a box of Peeps through the doubled plastic of a bag I brought home a day or two before Easter. The Peeps didn't show up later, but there were Peeps in her basket.
2. Her dad and I were acting funny.
3. The Easter Bunny left a toy for her cousin, but it was in a package, which meant it had been purchased.
4. The Bunny left a green pawprint on a napkin, but she spied a white spot in the pawprint she thought should not be there.

Put that all together, and it pointed to: my parents are possessed by the spirit of the Easter Bunny.

We've worked on logical conclusions since then, of course.

Autism Hangout

I forgot to post this link, which I found interesting. http://www.autismhangout.com

It even has a job board.

It seems to be supportive in the right way - day to day living rather than focusing on some mythical cure - but I'd feel a bit better about it if it weren't part of a suite of support sites (hearthangout, cancerhangout). Seems a bit two-faced - both helpful and exploitative - because of that.

Life stuff - BFFs and babies

Rosie just loves little kids. One of her goals in the next few years, she says, is to be able to babysit. Yesterday, she was playing at the park with her BFF, who had two baby dolls with her, and the girls were holding them and pretend-baby-playing. It was a little surprising to see Rosie baby-playing, since she's never had the faintest interest in baby dolls. Human ones, anyway. She always plays with stuffed animals and pretends she's an animal mother. I'm reminded of some of the information that has drifted out onto the net and people's conversation about Tony Attwood's book on girls with Asperger's, and how he notes the differences in girls' presentation. Girls are more able to take social cues from another person to follow along.

On the other hand, some of the other things he's apparently noted is that girls tend to 'suffer in silence' and become very shy. This runs counter to my experience with the women friends I've known with Asperger's and HFA, who have been, on the contrary, very in-your-face and belligerent. But then, I'm attracted to that, so perhaps that's my personal sample bias, heheh. Maybe I've just never gotten to know a quiet woman aspie.

One of our local Asperger's/autism support groups has regular support meetings for young women; but nothing yet for girls. I keep hearing that in social skills groups, the ratio of girls to boys is low enough to be uncomfortable for the girls. Maybe that's where I need to focus some organizing effort, rather than in the more general homeschooling for aspie kids area. Personally, I always got along better with boys, but I can see that Rosie does need the company of other girls though she insists that she is a tomboy. One of her aspie friends, a boy, always gives her this incredulous look when she wants to pretend or role play anything but pirates. LOL!

On a side note, I know I should read Attwood's book on girls, but I have now noticed - and am willing to admit at this point - that reading the excerpts makes me nervous. Not for Rosie - I look forward to reading it for her. No, for me. I know already that I'm not exactly NT. But nearly every excerpt I read from an adult woman sounds like something I've thought or said or experienced. I look at the diagnostic criteria, and I don't meet them. But just barely. The criteria are there, it's a matter of focus and control for me. Objectively, I can take a step back and recognize that if there were such a thing as a diagnosis when I was a kid, and if anyone were actually looking, I probably would have had one of PDD-NOS or NLD. Maybe even a light Asperger's, if they were looking carefully, but probably a strong PDD-NOS. [Nah. Upon reflection, if they had to dig that hard we're talking something lighter.] I was fortunate (??) enough to be both intelligent enough to compensate for my behavior and have a parent who forced me to recognize and correct some of my behaviors. The ones that embarrassed her. (Although I am trying my damnedest to keep her from doing the same to my kid, because it was incredibly demeaning and freaking traumatic. For example, how the hell did she think making fun of my monotone speaking voice was a positive way to change it?)

OK, see, this is why I'm a little apprehensive about reading it. I know I'm going to be upset.

Relevance Rates Rising

A Google search turned up this blurb from California:
http://autism.freedomblogging.com/how-common-is-autism-in-orange-county/

"According to data collected by the California Department of Education, autism rates continue to rise, with about 1 in 68 of this year’s kindergarten students being reported autistic. In 2000, that figure was 1 in 293."

I think that in these numbers, which cover a much wider range of the autism spectrum than previously, we're looking at the very beginning of a long-term shift in thinking about cognition and behavior: 'Wait a sec, a rather large portion of people perceive and think in a different way.' At least, that's the direction I hope it will eventually go in. It'll be decades in the making if so. Currently, of course, cognitive differences that have been there all along in the population are marginalized and pathologized. Perhaps with more recognition, that will eventually change. The parallel with homosexuality eventually being removed from the DSM comes to mind, though there's oversimplification in that.

And I have to ask: how much of pathologizing the new recognition of the range of the autism spectrum is driven by a pervasive, notoriously rigid institution like the public educational system? Is it possible that children are being identified in droves as autistic not because there's a rise in autism, but because the current educational system is broken? If that's driving it, the system as a whole is struggling to patch cracks that have been there all along, cracks children have been falling through for decades. If you add up just all the kids with school-diagnosed ADD/ADHD and autism, you're looking at a rather large percentage of kids for whom the current school system does not work.

Deconstruction

It turned out that I'd actually written about constant mental deconstruction of the environment elsewhere, about a year and a half ago, six months before we had a diagnosis for Rosie (or even dreamed that we needed one) and the Great Revelation descended on us. But I'll quote myself here:

I have a weird thing anyway, that I can't think about anything at all without this sub-surface line of thought about how it was built. If I see a couch, I'm thinking about how much padding was used, whether the frame is solid wood, whether it was joined or nailed or what. If I see anything of plastic or clay, there's always this sub-thought about how it was cast or thrown or molded and the process of it hardening and being popped out of the mold and etc. Anything I read, I automatically deconstruct into functional passages and the framework of the article or the arc of the story. With labels on things I end up musing over the glue that holds them on (and how the glue might have been developed) and the decisions that went into the positioning of the label and who researched the facts and whether it's printed on paper or a paper-plastic blend. I literally can't look at anything without imagining how it was put together. Half the time I'm awake, that's probably what I'm thinking about.

I ask me, what the hell is that? The only thing I can tie it to is when I discovered as a kid that I could write to manufacturing companies and ask for a brochure about their products. Goodyear and Peter Pan peanut butter each sent me these booklets that showed how tires and peanut butter were made. Fascinating! But somehow it doesn't seem to be something that would fuel a lifelong obsession. You'd think I'd have been an engineer at that rate.

Reasonable Explanations

A few posts back or maybe last year, I mentioned this thing I have where I can't think of an object without thinking of the process that created it. It's likewise with other processes, so I'm completely sympathetic to Rosie's need to clearly understand exactly how something works, and how it can paralyze her if she doesn't have that understanding.

Case in point: sleeping with the light off. After some alarm over 'the dark' completely typical of most kids, we'd gotten in the habit of leaving the hallway light on when Rosie went to bed. Problem is, she has trouble getting to and staying asleep because it's a bit hard to wind down. Yesterday, I told her that I was going to turn the hall light off.

"What? No! I always have it on!"

"It'll help you sleep if I turn it off."

"NO! I don't want it off! Don't touch it!" Shrieking.

"It'll help you sleep! You know how you have trouble sleeping?"

"NO! NO! It won't! I want it on!" Hysteria.

"Look... the fewer photons from the light that strike your optic nerve, the less your pineal gland will be stimulated and you'll sleep better."

Silence. "What?"

"Photons from the light bulb strike your optic nerve and stimulate the pineal gland in your brain, and the pineal gland regulates sleep."

"Oh. Well, turn it off, then."

Asleep in minutes.

Socializing & Homeschooling; Evils of Public School

Don't let anyone ever drag out that hoary old protest against homeschooling, "Oh, but your child won't have an opportunity to socialize with other kids." There are more social opportunities for homeschoolers available than we can possibly handle. And in far better social environments, too.

For instance, there's Scouting, where, despite any other objection you could make about it, the primary purpose of the organization is to learn how to develop friendships and place yourself in context with the wider community in a supportive environment. You can earn badges in conflict resolution and social manners - in addition to ones in elementary physics and computing. Or, there's martial arts classes, which give you exercise, physical skills, and humility while teaching you how to operate in a formal hierarchical social institution... and defend yourself against bullies. For that matter, there are chess schools/clubs, Lego classes, language classes, 4-H, sports, music, environmental groups and the entire range of service organizations. And church, if you're into that kind of thing. That's a freaking smorgasbord of social opportunities without having to add into it being imprisoned for six long hours each day into the same environment (essentially a pack of young animals vying for dominance) without the support of your family, with no way to retreat or take a break.

I'll save my screed against brainwashing and the origins of compulsory education for later. This may be a tricky topic for an educator to write about.

Public school is a snake pit, even for ordinary kids. I routinely hear or read people excuse this by claiming that kids won't learn how to handle adult life without learning how to endure abuse from peers in school; "oh, that's just part of growing up," I read. I'd like to know: to what adult life experience is this experience supposed to pertain? Aside from (possibly) the military or other institutions, in what other situation is an adult required to remain in the company of his or her age cohort with no ability to make choices about remaining, no way to avoid bullies, and no recourse for abuse? None. Not in this country. You are allowed to change jobs. You can leave your lunch table if you need to. And, I'd like to point out that this was not part of growing up for most of the history of humans. Psychologically and socially, we've evolved to be raised by an extended family unit or small group. This is also another pet topic... I'm on a roll with issues that have been simmering for decades, I believe.

One thing that school does teach well depends partially on the psychology of the kid. In learning how to deal with an unreasonable and legal-bound system, you can learn either powerlessness, how to control your frustration, or how to bully others. That middle possibility is obviously the best, if it can be achieved, but to anyone paying attention to the major K-12 educational issues, it's clearly the least possible.

I don't know if my older daughter will ever forgive me for not homeschooling her. I hear the note of resentment sounded at least once a week.

Back-to-Park Week

This short week was jam-packed with meetings in parks to launch the school year - homeschooling park day, the county homeschool back-to-school picnic, scouting... after all the stress of meeting new people in new situations, it was a definite dud as far as schoolwork was concerned. Rose couldn't focus on anything. Fortunately, we had a very productive school week last week and could afford to take it easy. She got a lot of exercise and social practice in! It's one of those times when I'm again very, very glad that we chose to learn at home so that we have that flexibility.

And, Rose pulled on her 'safety net' tags for each excursion by herself - without my actually even remembering about them. So I do feel that it was ultimately a good choice to have them made. I suspect that just wearing them as a backup plan has given Rose some confidence - sort of like Dumbo's magic crow feather, a sort of talisman as well as a safety net. About a week ago, Rose got "lost" in the library - I was actually only a few aisles away, but she was focused on finding books and didn't notice where I was. I came out of the aisles to see her standing by the librarian's desk and talking to the librarian. She had remembered to do exactly the right thing, and while she was anxious, she wasn't in a desperate panic. "A little anxiety, Mom," the librarian said, and she gave me a look to tell me that she'd noticed that it was a little unusual. I nodded, yep, and praised Rose for remaining calm and remembering where to go for help. It's a big step forward!

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."

Meeting New People

I took Rosie to my old workplace today and in the rush, forgot to consider that she'd be meeting some of my former co-workers. It would have been better if I had prepared her - she doesn't distinguish faces very well, so that's one reason greeting is frightening for her. She hid behind me and made agitated noises somewhere between whimpers and squeals. I got her calmed down, and then someone tried a little peek-a-boo to cheer her, and of course it had the opposite effect. "I want to go hooooommmme!"

I think we need to create a formal plan for how to handle this. A social story can probably help. Plus maybe suggesting that she pick out a feature on each person's face that looks unique. She can do individual features. Must think...

Magpie

Today was a particularly good day. Rosie's been going around for the last couple of days with that content and satisfied look that results from a job well done followed by a treat. In this case, she's finished with her second grade work and was promoted to third grade on Monday. Yesterday we went to the library and she's been absorbed by something interesting and new to read practically every conscious minute.

So today, we got up in a leisurely fashion, and then Rose decided to start working on her summer projects. She got out her microscope and notebook and started going through her new slides and drawing out her observations. Her dad punctured a finger and I made a slide smear for her. After six pages of notes and drawings - this from a kid who would rather jump off a cliff than complete a page of handwriting practice in school - she quietly put away her microscope and tidied up completely without any prompting.

Next, she decided she wanted to help out, and put a load of dishes into the dishwasher for the first time - nearly perfectly. "I felt I wanted to do something useful," she said. Darn straight that's useful! I'm glad to know that I can try to put this into a regular range of chores.

Overall, a very satisfying day for everyone. Though she was a bit distressed by her dad's reaction in the afternoon, when it turned out that she had been so attracted to the tiny screws in his computer case that she gathered them all up and secreted them in a dresser drawer. "They're so shiny!" she wailed. "I couldn't help it! I didn't know!" It's ok, I told her, you're just like a magpie. She loved that. Magpies came up in conversation all day. I had no idea there were so many literary phrases that included magpies.

What to do when you worry too much

We've found a fantastic kid's book titled What To Do When You Worry Too Much. It gives kids a great cognitive tool to use to help control worries that spiral out of control, objectifying the worry into a pesty creature that you imagine forcing into a box and locking up away from the nourishment of your attention, so that it instead of growing, it starves until it's small enough to take out and look at when you're ready.

In just a couple of weeks, Rose has been able to reduce the impact of various anxieties and uncertainties, which is fantastic. It's not that the worries don't happen (ants! moths! germs! new experiences! unfamiliar procedures!), because the world is still full of worries; and it's not that the box metaphor gets used deliberately every time a worry arises. It seems that it's the very idea of knowing that you can objectify the worry and refuse to "feed" it that works. She has that much more control and ability to back off the escalation of anxiety and her reactions aren't as severe.

I've started using it myself; as a visual metaphor it's a bit more effective than the more verbal reasoning of adult cognitive therapy. ("Now, what's the worst that can actually happen?") And I need it - I've gone off my anxiety / depression meds, so I'm right back where I am, except better-rested.

Ironically, Rose came in while I was writing this, flipping out about the possibility that there might be a moth in the bathroom. "Don't feed that worry, " I said. She thought about this but still twisted her mouth up and jumped from foot to foot.

I tried another tack. "You're borrowing a worry - do you know what I mean? You don't see a moth in there, but you think there might be one and you don't know for sure, so you've gone down to the worry bank and asked the teller for a worry, since you're all out." That got a grin, and at least a change in breathing. "What could you do about it?"

"I could go use your bathroom," she said.

"If that works for you," I said.

"OK!"

Just a month of chaos

Wow. Just a complete month of chaos, as Rose's great-grandmother had to come live with us for a few weeks before getting settled into a retirement community. All of our homeschooling dropped away. Rosie was a trooper, though, giving up her room to Great-Grandma, and quietly amusing herself while we couldn't give her the level of attention she was accustomed to. Great-Grandma enjoyed talking with Rosie, too, since she can't hear well and Rosie had no qualms about getting right up next to her and shouting in her ear. She told many stories of her childhood that Rosie just loved.

On the plus side, things have calmed so much over the last month or so, even given the high levels of complete family chaos of which Great-Grandma's visit was a part. Rose is just so much more relaxed, and she has very good eye contact with us, which I've found is a strong indicator of her anxiety level. The more she can hold eye contact, the less anxious she is in general.

Rosie's older sister gave her a rabbit for Easter, and we were fairly apprehensive about how she would react, but she went right to the rabbit to pet it with very little fear. Later that same day, she actually held a moth. Given that animals and insects have elictited hysteria in the past, I'd say this is a powerful step forward.

Today, we finally recieved the Chewy Tube that Rosie had requested and she loves it. The only down side, she says, is that it lacks a flavor. I'll have to look into that... in the meantime, just not chewing fingers and hair is great.
We got the chewy from http://www.affordabletherapysolutions.com/ or rather, from their eBay storefront. I like that it's a family business. They ought to have quite a lot of familiarity with the products. Very fast shipping, too!

Challenges to the ABA Industry

I found a fantastic article on the dubious ethical approach of ABA. "The Misbehaviour of Behaviorists," by Michelle Dawson. Also found her blog!

In the Swing (or maybe the swim) of Things

Well, we've spent the last few weeks really getting into the day-to-day and week-to-week of homeschooling, and we're starting to put other plans in motion. Finally! There are still some hitches with the schooling schedule and timing, but I think we'll be able to work these out. We're also trying to meet new friends, start to work on identifying emotions, and have been talking together about some sensory issues.

Rose has had one playdate with a new friend who also has Asperger's. It was a blast. We went to the city zoo with him and his mother the other day and had a great time. The kids ran about holding hands and helped one another with fears (like noise and animals). Now they're agitating to go to a larger zoo together (one with a better crocodilian selection), but of course this takes more planning. Rosie's working on learning typing, since handwriting is so frustrating, and she's making fast progress, so she should be able to email her new friend soon.

We've talked about some sensory issues together too - Rose and I watched a video of Temple Grandin's together and the idea of the cattle squeezer just lit her on fire. She's extremely excited and wants to write to Dr. Grandin and talk to her about squeezing. I found plans for a squeeze machine on Dr. Grandin's website (well, one of them), but it's a bit more than I think we can manage to build right now. I was hoping for something simpler and perhaps slightly less intense that can be used at home and not necessarily 'under the direct supervision' of an OT. We might try a weighted blanket first.

I've ordered an exercise ball so that Rosie can sit on it and bounce a bit when doing schoolwork. We'll see if that helps her to sit for longer periods. Plus, Rosie's asked for chew toys - I looked up special sensory chewies at various websites and described them to her, but then she asked if she could just have a doggie chew toy with a lot of small nubbles and a squeak. I can't think why not - I mean other than my initial reaction ("dog toy!"). I imagine I can find one safely made to chew for a person - so we'll try that this weekend.

Things are advancing nicely!

Social Skills Training & ABA

I've started attending a social skills training workshop for parents; so far I'm not too crazy about it. Even before I started to sort out what the different therapies were, I didn't care for the techniques I was reading about, or the specific "social skills" that seem to be required.

I don't see the value, for instance, in forcing kids who find eye contact alarming to make eye contact. Or forcing them out of comfort-oriented behavior like stimming. Why the hell are these "target skills?" I really have a problem with that. For god's sake, teach your child to fake the eye contact if you want to improve how people perceive him or her. Likewise, the reward system is a bit appalling. I have a thinking person to raise, not a dog.

The way in which the social skill set for training is presented to parents is repulsive. It's essentially to try to train an autistic kid to blend in and be exactly like all the other kids. It's that old square peg, round hole business. Why would you want your unique little person pounded down to fit? I have news for them anyway: your unique little person is never going to be like all the other kids no matter what training torment you put her through. Leave her alone!

I can see behavior observation and therapy being effective if a kid has a truly problematic behavior, one that is dangerous to himself or others. I can see it being helpful, with an older child's awareness and consent, if there are moderately problematic behaviors, or ones that the child him/herself wants to work on. The worst thing about a parent or therapist deciding to train a child out of anything other than a dangerous behavior or without the child's permission is the damage to the person - the child's autonomy and dignity. Not to mention the long-term effects of stress - you're talking about kids who have a lot of stressors. If the actual stress response can't be controlled, but only the external behavior to make people around them more comfortable, what you're training a child into doing is bottling up stress.

I'll continue in the class for now, see how it goes, see if there's anything helpful. We'll take the opportunity to work on a skill the ABA way and see how it is - being able to identify the pauses and gaps in conversation, so that Rose can tell when not to interrupt, if she can. With her full consent, of course. I know it's hard for her to identify these things, and without a clear understanding of exactly why it's hard, it's a little difficult to know how to approach improving it. It seems to me that if you're going to try to improve a specific behavior, you ought to know the mechanism behind the behavior in order to approach it in a humane and respectful way. Autistic kids get even less respect for their personhood than the typical kid gets, which isn't much in most families as far as I can see.

I believe this topic makes me cranky.

Family Traits

I was chatting with a cousin of mine yesterday. He's under a tremendous amount of stress right now, and he was telling me about the effects it was having on him. "It takes me half an hour to get socks on in the morning," he complained. "The heels - I can't get the sock straight, and the seam on the toe hurts, and when I finally get it all straightened out, the sock is too stretched out and I have to start again with another one."

Hm. That sounds like someone I know.

Later, he went on: "The freaking lights are screwing me up. Can't you see that flickering? I don't know what's wrong with everybody that you can't see it."

Hm.

Databases and Favorite Things

This evening, I was working on an informatics course I'm helping to write and opened up one of my database design texts to review some stuff. Rosie climbed up in my lap and started asking questions about data flow, read part of a section, and then asked if we could make a database of our own. Um... sure, I said. "We need a REALLY huge piece of graph paper," she said. Her dad jumped in and explained why we have computers - they can do really huge imaginary sheets of paper. Fantastic! says Rosie. Let's go make a database on Mom's computer!

I have to admit I was somewhat bemused, since I was trying to imagine whether this would have been remotely interesting to me as a child. Possibly not, no, but data flow was always interesting. I remember those vacuum tube things that the old-style drive-through bank tellers used were utterly maddening/fascinating to me due to the idea that information went through the tubes. I imagined them expanding exponentially in massive recursive patterns till I went nuts with it. Teh tubes! No wonder I work on the net.

So we made a database of people in the house, listing names, hair and eye color, favorite color, and 3 top fears. When we got all the data in, I tried to show Rosie how to sort the data, but unfortunately I'd somewhat automatically created a key field with sequential numbering. The sorting disarranged the sequence and Rosie had a litter of kittens and a near-meltdown. Well, OK. We'll get into the beauties of data manipulation later. In the meantime, the gaps in some of the fields bug her (the cat's cell phone number, for instance, is a necessarily blank field). Ah, a child after my own heart!

We went to one of the teacher stores as a treat and I got Rosie a big tub of the only toy she's been willing to play with the past three weeks. Her homeschool teacher had given her a very small set of pattern blocks for conceptual math manipulatives - only 30! Rosie kept saying. So now she has 250 pattern blocks and can create huger and more complex symmetrical patterns out of the blocks. I said musingly to Rosie's dad, "I think most people make pictures with these things instead of patterns, which seems really weird," and he laughed and said that's why we were married.

Vitamins... hm...

Based on a comment I'd read on a forum (you can see the probable mistake here), I wondered if B-vitamins and fish oil would help Rosie focus and settle down a bit. After one day of a megavitamin B and that popular fish oil I can't bring to mind right now, she was incredibly easily frustrated and regressive emotionally. I mean, yow.

Now, that could be overdosing the poor kid on B vitamins or it could be total overstimulation due to a play we went to (not the symphony, another event), but in any case it was a marked difference. Vitamin deficiencies - this was the kind of thing I was hoping to get her pediatrician to help with, but no. When we saw him last week, it was pretty much, "Well, congratulations, she has Asperger's, she'll be fine, here's a list of therapists." Well, crap. Of course she'll be fine, but I know I have vitamin deficiencies that make me muddy-headed if I don't keep up on the supplements, so knowing if she does too would be damn helpful I would think. I thought since he was a bloody researcher, he'd have some ideas on best things to do. Bah!

A friend of mine says I expect this cooperative collaboration from people that just isn't there most of the time. That is probably true. I do sort of expect that.

Play Something Nice for Mom!

Rosie and I went to a kids' adaptation of a wonderful symphony, complete with storyteller and visuals. It was a double orchestra, both youth and the regular, and it was a terrific introduction to "how to do a symphony/concert/musical event." When to clap, when it was ok to talk, how the first violin and the conductor are honored by walking on by themselves, the encore. I hadn't really thought about the formal pattern of the event until I saw it through the kids' eyes.

There were booths in the lobby of the hall afterwards so the kids could see and touch the instruments and ask the young musicians questions. It was all wonderful, until... the symphony's sponsor gave away a rather nice recorder to every single child there.

Every single child. Yes. Three hundred and more little kids with recorders, simultaneously tootling and shrieking, in a huge, echoing space. After about twenty minutes, I literally had shudders running up and down my back that I was doing my best to suppress. I thought I was going to cry. I was doing all I could to not burst into tears. And we stayed half an hour after that! because Rosie could not bear to leave all the fun. I know what my personal hell involves now.

Inexplicably, the incredible din bothered Rosie not at all. Or to be honest, if it did, I was too traumatized to tell. If I had remembered to put in the earplugs I keep in my purse it might have helped, but no. I couldn't remember that I had them. When we went home I looked in the mirror and saw that I was pale and waxy, with bruises under my eyes so dark I looked like I had been punched twice. Yeeg. I put in earplugs then, because my ears were - not exactly hurting, but they couldn't stand any more sound. Then I pulled pillows over my head and crashed for two hours.

When I came out of the bedroom, Rosie said, "Mom! I want to learn to play the recorder!"

IEP

Well, nine hours since Rosie's IEP meeting at her old school, and her dad and I are still practically twitching with irritation. No doubt I'll be doing it every time I read the assessment report. That official language is pretty loaded: disability, maladaptive, impairment, at-risk, deficits. It's definitely not couched in terms of objective language - a child's strengths and weaknesses. An IEP meeting is where the results of the school assessment are presented and discussed and an individualized educational plan offered, which lists accomodations for disability and specific therapies the school district will offer.

One point of strain has been in recognizing some of the inconsistent behavior of the school team. They were pushing their agenda fairly hard, which is that they disapprove of our taking Rose out of a mainstreamed classroom. For the school psychologist, the main issue seems to be that he thinks that keeping her in school is what provides her with opportunities to practice social interaction and allows her access to social skills therapy. This from the guy who told her to try harder to make friends, resulting in her going out and attempting to play with kids who roundly rejected her. I'd like to know how he thinks keeping her in a pressure-cooker situation socially is going to help her. Everyone who is open to admitting it knows how vicious a passel of kids is, particularly on the playground. She's marked out as different already. How is forcing her into this on a daily basis going to help her cope with both learning how to socialize and how to deal with rejection and other situations? For that matter, how is the schooling model used over the last hundred years or so at all normal or positive? Oh, that's something for another rant.

Another inconsistency that has me grinding my teeth is that they kept dangling this offer of both group social skills therapy and individual help at making friends, using the buddy system - if we'd keep her in regular school. This was first brought up in mid September. They didn't do a damn thing to help her all the way through the end of December. If they could see perfectly well that she was unhappy and struggling and that she needed a buddy, why didn't they help her? That doesn't require a diagnosis or permission for therapy of any kind - which they also had by the beginning of November. Their intern told me they wouldn't have group social skills therapy because there weren't other kids who needed it. The team - psychologist, teacher, principal, speech therapist - saw that she was struggling to make friends and didn't do anything to help her, though they outlined from the beginning what they ought to do.

We were so grateful for the representative from the home school agency who came to explain the homeschool program to the team, and brought the report from Rosie's supervising teacher that she was thriving and that she thought Rosie would finish all her second grade work early. It countered wonderfully her classroom teacher's emphatic, bristling, angry comments about how Rosie couldn't finish work, melted down or refused to do work with a time limit, was defiant, and had produced very little work from the beginning of the term to the time when we took her out. If we have another IEP - say, at the county level, or if she ever returns to the regular classroom - I really want to have a psychologist who specializes in autism and an advocate present.

I think I'll be snorting steam from both nostrils over this for a while yet, even considering that I have nothing to sustain that anger at this point. The attitude that Rosie was a nail sticking up that must be hammered down is just infuriating. No true sense of accepting or accommodating differing abilities or cognition.

The home school representative asked us on the side why we went ahead with the IEP at all, since we had already decided to pull her out of the classroom. Three reasons, really: firstly, her pediatrician, who's a specialist in developmental disorders, is relying in part on the assessment to help him get a baseline, and I want to see if any therapies are available to us through the agencies he's a part of; second, getting this broad assessment helps us understand where her difficulties are so that we can help her better; and third, if she does ever return to a regular classroom, I want to be sure that she does get accomodations that she needs in that environment.

Family Trip to Fry's

Oh, what a nerd family joy - I got a contract check in and we had a shopping spree at Fry's. Yes, the echoing noise and the crowd and the hard floor make us all crazy, but still! Geek heaven. (Then an hour or two of very necessary quiet retreat for all of us when we get home.)

We lingered in the robot kit aisle. Rosie has been negotiating for a long summer break from school starting in July, which I don't think is a great idea. I suggested that we spend the summer building a robot instead. Rapture! She was spinny with joy. It will take no convincing to get her to write or do math revolving around robots. She was nutty on the subject even before she saw Asimo in person at Epcot.

I talked myself out of getting a wireless signal detector since I just picked up a widescreen monitor, but now I'm sorry. Phooey.

All too familiar...

I had to laugh, the last couple of days, over yet another new realization about how strong family traits can be. I've always had a bit of difficulty in social situations, but generally plow through OK once I brace myself. But I've been realizing that maybe my difficulty is a bit specific - maybe related to that shadow spectrum in the family.

Yesterday, I had a project kickoff meeting with a new project team, and I pulled a communication mistake I remember having made in the past many times - the vague self-introduction that leaves out my relevant background and anything else anybody might want to know about me, and includes at least one unintentionally cryptic reference that leaves puzzled looks on people's faces. I realized halfway around the introductions that I'd done it again, and tried to mend it once I got a chance. The rest of the meeting, I kept getting odd enough looks from the others that I knew something wasn't coming out right. I don't actually know what, though. It was a sort of a smut-on-my-nose, is-my-underwear-showing kind of feeling, but I think it was something about what I was saying or how I was saying it. I tried to make the rest of my comments extremely to the point, which took a little mental practicing.

And today, my older daughter was asking me to go on a short group trip with her, and cautiously asked, "Lot of new people to meet and talk to... are you OK with that?" I was a bit taken aback until I realized that she must actually have a reason for asking me in that way: I guess I avoid meeting new people. I don't think of myself as particularly avoiding people - I mean, I do presentations, I run meetings, I join groups, I have friends over - but heck... I guess I also avoid crowds, new people I haven't approached myself, and making phone calls. (For that matter, upon reflecting, I guess I have trouble with greetings and goodbyes, too - they make me tense enough so that I often avoid them. Including hiding when I recognize someone in public I would need to greet. Which I know is rude, but sometimes I'm too wiggy.)

Well, there's a training I'll be attending on how to do social skills training. I'd better not miss that, hehe.

Sensory Issues... Weighted Blankets and Foam

I had to read the "sleep problems" questions several times over the last few weeks while filling out assessment forms for the IEP before realizing that maybe the difficulty Rosie has getting to sleep is actually a "sleep problem" and not just a kid who hates going to bed. So that's what all that complaining about the bed being uncomfortable was probably about! A combination of sensory issues and a busy mind, I think. I knew she was sincere about being uncomfortable and I was starting to think that we had a 'princess and the pea' situation going; I couldn't find a thing wrong with the bed and it's fairly new.

After getting Rosie a two-inch tempur-pedic foam mattress topper (set of two at Overstock.com! what a bargain!), she's been able to relax better when trying to sleep. It hasn't solved the problem completely, though, so when I ran across the weighted blanket idea a little while ago it sounded ideal. It looks as though these are really relaxing and helpful for autistic folks and kids with ADHD. It sounds pretty snuggly - heck, I want one.

I'm trying to decide whether to buy a weighted blanket or try to construct one myself. Most of the commercially made blankets seem to be filled with poly beads, which seem as though they'd be unwieldy to work with; my aunt suggested drapery weights, which come either in long strings or chains, or metal shapes prepackaged in a sewable fabric. Drapery weights might be a little stiff and difficult to wash, though. My aunt suggested sewing pockets into the top of the blanket so they'd be removable, but who wants velcro or other lumpy fastenings in a blanket that's meant to be soft and soothing?

"I'm glad I have Asperger's"

A direct quote from Rosie.
Because it makes her different, she says, and she likes being different. Although I think the smirk on her face when she turned away secretly said: better, not just different.

I contemplated quickly taking the opportunity of reinforcing different, since thinking oneself better is betrayed in so many ways to other people that it's definitely not any advantage in getting along to think so, not to mention that it's a false way of thinking - there's always going to be someone better than you are at something, no matter how intelligent or capable you are. It undermines one's sense of goal-setting and necessary work, too - I'm not expressing this terribly well, but having fallen into the same ego-trap as a child and young adult, I don't want her to make this mistake. I still fight a tendency towards intellectual arrogance; I'm hardly a dolt, but I'm as prone to making a mistake as the next person, and it's been one of the enormous lessons of my life. (Old dogs DO learn new tricks, thanks!)

However, I didn't correct her at this time. It's the first time I'm hearing pride in her difference instead of worry or confusion, and the last thing I want to do is squish that. Her unique gifts will take her far, I think, and there's time enough to seek a balance.

Wotta Week

So, this week we've been shifting from district public elementary school to county public homeschool, while trying to finish the assessment for the IEP. Today was really challenging - 2 appointments with the speech and language therapist and OT for Rosie and a meeting with the new homeschool teacher who'll oversee our work. Three new people to meet, two new locations, and a whole new routine approaching!

Rosie held up like a champ the whole day, though she was pretty nervous. By the evening, though, the strain started to tell and she was extremely reactive and emotional. She asked me to hug and squish her when I tucked her in, and pretend that she was a pillow, and I suddenly realized that this was the same kind of thing that Temple Grandin mentions about her squeeze machine. Rosie had a stressful day, and needed full-body squeezing to calm down. So I did, and it helped her tremendously. Wow! I'll have to look into getting a weighted blanket and see if that helps Rosie's stress levels.

I'm just starting to notice sensory issues with Rosie that I hadn't before. She's noticed and mentioned strong odors a few times in the last couple of days - maybe it's a heightened level of anxiety, or maybe she's more communicative than she used to be in the past. (She's always been talkative, but communicative - not so much.)

I keep wondering if these things I'm seeing for the first time are really "new" or if I'm just now knowing what I'm seeing. But then, I remember Rosie as a toddler. Another parent wrote on his blog about how his son lacked the "elastic band" that keeps typical kids coming back to their parents every few minutes when playing. He described how he followed his young son for more than half a mile down the beach, and the boy never looked back for his parents. Well, Rosie was like that. I followed her down the length of an entire mall once, also around half a mile, just to see if she would ever turn around and look for me, and she never did. So I reassure myself that yes, it was always there - the newness is mine.

Homeschool Decision

Well, I've thought for years (knowing from an early age that Rosie was "quirky") that the homeschool decision would come up, and I was trying to put it off until after Rosie's IEP is complete. But here we are, after the holiday break, and Rosie has been melting down for days thinking about the return to school. So that's that. We're doing it now.

The school psychologist and principal and her teacher have been distressed; they believe wholeheartedly in the high value of the IEP and the theraputic effort of the adults at the school. They were also afraid at first that we were simply reacting to her emotions and pulling her out of school in a 'mistaken' desire to protect her. Words were used like "truant" and "removing her from school." It was hard to explain enough to them so that they were satisfied, yet only give them the amount of information appropriate for a family's private decision.

I do believe in their desire and capability to help, and that's saying something, considering that my family tends to be suspicious of bureaucracy in any form. If this essential sense of fierce individualism did not run in our family (from both sides!), we would be working with this IEP team and no doubt feeling glad for it. However, there it is - we are not a family with particularly mainstream views, and we feel that nurturing her individualism and particular mode of cognition is superior to being trained to fit into the herd. And yeah, I'm afraid I do see how terribly arrogant that sounds. It's not meant that way, if you can believe it. One of our top family values - if not the top one - is valuing the unique qualities of people. So, the realization that the IEP team's idea of what would be helpful is not just social skills training (for instance) but how to be like everyone else fills us with horror. Every time Rosie's older sister mentions a class assignment that requires her to watch some TV show, I break out in hives. We don't do TV in our household.

We believe in the value of homeschooling, we know Rosie and her needs, and we're a family of quirky, intelligent, and successful geeks, who know what she's going through - partly from experience. I don't have any worry that we'll do well once we get into a good routine.

Nonverbal cues

Rosie and I went to the library and checked out a kid's book on nonverbal communication. It was pretty general, but it served to introduce the idea, which fascinated her. "I had no idea people did most of their communicating this way!" she exclaimed. (Factoid from the book.)

"Tell you what," I said, "watch carefully, and every time you can see me or someone else talking without words, and you can tell me about it, I'll give you a quarter." She got a money-counting bank for Christmas.

"REALLY?!" Oh, total excitement.

So, she's concentrating on eyebrows; frowning, waggling, etc., and has earned a dollar so far. She can't tell what is meant by the expressions she sees, but she's learning to recognize that one's going on. Some of them I've been a bit stumped to explain - ok, example. In The Princess Bride, there's this one scene where Buttercup finally knows the Dread Pirate Roberts is really Westley. He's explaining to her why she should not have doubted him, and he waggles his eyebrows at her, first lifting them high and then creasing them together. Sheesh! It took me a few rewinds to figure out what the hell that meant and explain it. I think it was that he wanted to show that he was earnest and sincere, but was worried that she wouldn't believe him. But I'm not 100% sure. Complicate that with the fact that the expression is an exaggerated one in a funny movie, by an actor. Dang.

Well, at least we're having fun and learning.

Finally letting her know!

It turned out that Rosie's anger (last post!) was due to her thinking about the conflict between what she understood her school psychologist to have said a few weeks ago, and what I told her when I heard about it. Or at least that's what she said it was about. I'm never quite sure, when I try to get to the bottom of something like this- sometimes I suspect she's coming up with something just to have a plausible answer so I'll stop asking. It had been bothering her anyhow, so it's just as well.

Her school psychologist hadn't launched any kind of therapeutic effort, he explained when I called him, but was trying to engage her in conversation during the assessment process. He told her something along the lines of it being easier for her to make friends at school if she could act like the other kids do, and Rosie took it as meaning that she has to stop being herself and be like everyone else. When she told me about it, I was a little distressed and said that was wrong. Apparently she was mad at me for saying this. So, I explained to her that I'd talked to her school psychologist the other week and that what he had meant was acting only - that she didn't have to give up her true self.

She digested this for a moment and then said, "So I don't have to be like everyone else? I can think my own thoughts? I just have to appear like everyone else?"

"Yes, exactly," I said. "Learn what they do or say."

"It's pretend," she said. She was radiant.

A second later, she was eyeballing the cover of a book left in my room on Asperger's. "What's this about?" I thought the timing was good, so I told her that her qualities of special thinking had a name, Asperger's, and this book was all about that. "Really? Cool!" she said. (Hey, my kind of thinking's in a book!) I went on to remind her of things I'd mentioned before, without using the term: that Asperger's meant that she had a unique and valuable way of seeing things and that she had a fantastic memory, but that it also meant that she had some trouble understanding what people were saying or doing sometimes. She nodded eagerly, and so I also reminded her that Mom and Dad hadn't had many friends when young either, but that it got easier to find other interesting people to be friends with as you got older. She liked that, too.

After our nice chat we went madly shuffling around the house, round and round, faster and faster, trying to build up enough of a static electricity charge to light a tiny neon light. (Five bucks at Edmund Scientific!) It was hilarious. We couldn't get it to discharge with just one of us holding it, but it glowed beautifully between us, so it was a nice interactive, too.

I was really glad that the opportunity to broach the subject came up and that it went well. I was fretting about waiting to get hold of one of the kid's books on Asperger's and if any of them were worth it for her - and rather blindly wishing that there was a video out on YouTube by other aspies that could tell kids her age what it was about and not to worry. Maybe I'll write a few videobloggers and ask!

Holiday Stress, Definitely

A little over two weeks of higher stress due to the holidays and a change in family schedule (now that I'm working from home), and yes, it's definitely what Rosie's struggling with. She had a hard time meeting my gaze for even a fraction of a second and couldn't tolerate frustration at all, blowing up (melting down?) at the least stress.

But yesterday, (after staying up for New Year's eve and, typically, having difficulty with the presence of guests and the change in routine) I noticed a shift - she became calmer, more communicative, more focused, and was able to meet my gaze clearly and for a long period. She even quoted the school psychologist to her cousin, who was having a tantrum, telling her that it was nicer to face someone and look at them when talking.

Today, she was able to meet my gaze entirely WITHOUT looking away - at all! This took place, however, as she was being reprimanded for pinching me hard as I was giving her a hug - something also completely unprecedented.

I'm a bit shocked - she's never done anything remotely like that that I'm aware of. She wasn't able (or willing?) to tell me what prompted the impulse, wasn't inclined to be sorry about it, and when I was trying to get to the bottom of it, held my gaze with a mean expression. I was slightly inclined to get lost in the wonder of looking her in the eye and feeling connected, but that's my issue, not hers, hah. I told her I wasn't about to tolerate that kind of behavior, and got a clear, if snippy, acknowledgement that she understood me. Not a good development. I am going to try to get to the bottom of what's going on... help her sort out what she might be angry about.