Life dawdling on...

A quiet early summer afternoon. Rosie and her sister are delicately, patiently snipping apart owl pellets at the kitchen table and sorting the bones. I'm trying to work, though not very successfully. There is a feeling of peace.

Early Warning Signs

It's been a while since I last posted, but we've just been chugging along. Dealing with early puberty... learning to tie shoes at last (much relief!)... learning to write multi-paragraph papers... etc..

Recently I spotted the "Red Flags" list at Autism Speaks for what are being called absolute indicators for atypical development in a young child. They are:

* No big smiles or other warm, joyful expressions by six months or thereafter

* No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter

* No babbling by 12 months

* No back-and-forth gestures, such as pointing, showing, reaching, or waving by 12 months

* No words by 16 months

* No two-word meaningful phrases (without imitating or repeating) by 24 months

* Any loss of speech or babbling or social skills at any age


Rose only missed one of these. She was a very early talker, and a happy, smiling baby. Granted, some of her early talk (complex sentences and big words) was parroted, but it always made sense in context, and little kids do that. She was making verbal jokes and puns at 12 months. No surprise that autism didn't occur to us.

The one thing that she was missing, in retrospect, was the reciprocal gestures. I do remember her reaching for things, and waving to people. But no gestures that would say to someone else, "Hey, look at this with me!" No pointing, and no pointing and then turning back to look at our faces to see our responses.

It still seems strange to label what we originally identified as a personality quirk as a "symptom." Rose only seemed a little self-absorbed and indifferent to our opinions - a very self-confident, opinionated little kid. We laughed, and shook our heads, and said that she was living in the vivid fantasy world that we remembered so clearly from childhood. I still hate to pathologize this, as it's also one of her - our - great strengths - the ability to become absorbed in thought, to concentrate and dismiss outside irrelevancies, and unleash a powerful creative capacity. But on the other hand, if we had realized that our family had these issues, we could also have arranged for help with social issues and speech difficulties at a much earlier age, and they might not be as much of a problem now.

Meeting & Greeting

Rosie is pretty stressed when meeting strangers, and I'm a bit at a loss as to how to help her with it. Today, we took her great-grandmother to the doctor. Rose is wonderfully patient and compassionate with someone who has confusion and memory problems, and was a terrific help. However, the trip entailed a lot of meeting strangers in the doctor's office. A direct greeting would make her startle and hide behind me, making a terrible face. We would explain that she was 'shy,' but it didn't lessen the difficulty. The most distressing thing is that nurses and other medical staff tend to be fairly social beings, who pursue contact with shy people rather than let them alone. I tried to encourage Rose to say something to deflect it, such as "I'm REALLY shy," or even "I'm autistic," but she explained that under the circumstances, she couldn't say anything at all - not a word.

Later in the day, Rose brought up the idea of humans as social animals, and we were talking over the differences between instinctual behavior and reactions to stimuli in this context. I explained to Rosie that it was part of normal human behavior to be worried about others in one's group, and that nurses in particular were very motivated to make sure that everyone was "OK," and often very socially oriented. We talked about how it was distressing for very social people not to make eye contact, that it was one of the ways that they checked to see if another person was "OK." If you hide behind your hair or me and make a face, I explained, you're sending signals that you're not feeling "OK" and their reaction is going to be to continue to try to make eye contact in order to comfort you. They don't know that eye contact makes you scared.

We talked about eventually creating an 'act' where she could use her fabulous fake eye-contact technique (look between someone's eyes instead of right in them) and say "Hello" in a light tone, but it's clearly beyond what she can do right now. So what to do? Her dad suggests autism awareness jewelry that she could point to, and maybe that could help, but it might also require more verbal explanation than is possible. I know other people have used "I Have Autism" business/info cards to explain things in times of stress or emergency. But she's not old enough to constantly carry something like this.

And then, I don't know in general whether this is the right way to go - constantly bringing autism-as-a-weakness to the forefront. I want her to own both sides of autism, the strengths as well as the weaknesses, but it's hard to imagine that taking this step of public labeling and self-advocacy won't overemphasize the weaknesses. Part of self-advocacy is owning up to the weaknesses, though, and I think it might be better to teach Rosie how to do that in a matter-of-fact way. I'm just not sure that literally carrying a label around is the best way to do it... but am also not sure what else to do.

Sing Like a Bird

An afternoon aspie-jaunt to the local zoo turned up not only birds and animals, but kids on the playground who SOUNDED like birds and animals. There was a kid there (not of our party) who had the most shocking and amazing voice - like an emergency siren or a shrieking water bird. The volume she could achieve was incredible. She was pretending to run from monsters, which was a game that most of the kids on the playground seemed to be participating in, but of course this meant she had to scream. Rosie's pal was trying to be one of the monsters, but eventually had to hang back and keep his hands over his ears. Rosie simply faded out of the game after enduring a couple of those shrieks, and went to go play on her own in a quiet corner. The girl happened to be standing a few feet from me (about ten!) when she let out one of these ambulance noises, and I swear for a moment I thought I might need an ambulance myself. My eyes did this weird jittering thing and I'm pretty sure I actually blanked out for a second. Took a couple of minutes to recover from, too.

But it's not the first time I've had that reaction - a memorable other time was when Rosie herself let out a corpse-raising shriek as a toddler, when at a friend's house for dinner. So I found myself slightly concerned about what the heck that was. After a little poking around in medical articles it seems that it's probably sound-induced nystagmus, which appears to be related to inner-ear issues. (That would certainly explain the nausea afterwards.) Doesn't explain my blipping out for a moment (though stress would!) but could explain my lifetime sound sensitivity.

Rosie is looking forward to learning an instrument next school year, since fourth grade is the year they let you start band in public schools. Our homeschool, being also a public school, follows this pattern. She wants to learn a wind instrument - saxophone or clarinet or flute. Though I do like how those sound, I think I'm going to be in for a rough ride for a few years. Seriously!

Good thing I have a set of the best earplugs ever. SilentEar are just the best I've ever used. You have to get a starter set in all 3 sizes so that you can fit them correctly - it turns out for instance that one of my ears is bigger than the other, so I use two different sizes - but that's under $20 so it's WORTH IT.
http://earplugstore.stores.yahoo.net/silnatrubear.html

I'm sure that sounds like a commercial, but I can't not rave about them. Total relief for someone with sound issues. I haven't fitted Rosie with a pair yet, but I keep a pack of the squishy ones for her until she's old enough to take care of a reusable set.

Anxieties

What with several elderly family members in and out of the hospital, plus our strained economic and living situation, Rosie's been absorbing stress and is rather wound up. We've resorted to 1mg of melatonin and a dropperful of "Kid's Mellow" at bedtime, in addition to the backrub, soothing music, and strawberry scented relaxing spray routine. Getting her to take the melatonin was a bit of a production at first. She was interested in the recent research showing that 3mg of melatonin helped autistic kids with sleep, but insisted that she "doesn't take pills at night; only in the morning."

"But sweetie," I tried, "I take pills at night."

"You and I have a different pattern," she explained somewhat haughtily.

Indeed. Well, a friend whose kids also need melatonin mentioned that there was a liquid form of it as well, and that Rosie needn't know about it. I knew that wouldn't do - she needs to know what is being given her and why; I won't dose her without her awareness at this age. But I was about to despair, until after one night where Rosie finally capitulated after being so overwhelmed with anxiety that she could not sleep until the wee hours of the morning.

It's helped, but still - nightmares about bugs have persisted, and a hundred other jittery things during the day keep her pretty jumpy. Last night she sobbed that she didn't want to grow up and have to worry about taxes. Admittedly my first internal reaction was something of amusement, but then of course, I did realize that not only is this a legit concern related to life as she's experiencing it, but that her mind is subconsciously using multiple metaphors to express her anxieties. It's said that there are only two certainties in life, after all: death and taxes. I'm sure it's too much for her to face the impending demise of the relatives she loves - taxes is an acceptable deflection.

Poor kid, approaching her first experience with death of loved ones. I can't say I'm not stressed either, and it's been increasingly hard for me to cope with her outbursts.

"Turning Point in My Life History..."

Rosie proudly says that today's been a turning point in her life history... her hair has been 'rescued from the clutches of brown.'

Yep. My kid has purple hair, courtesy of her older sister.

What I think is rather wonderful about it is how deeply overjoyed she is - she really, really hates being thought of as ordinary in any way and is in ecstacy over such a reaffirmation of her self-image. I'm seeing this upsurge of pride and confidence that I hadn't expected.

"If she'd been a rabbit," said her sister, "she'd have been doing 'helicopters' on the lawn." For anyone without a pet rabbit, that's when they're so overjoyed about something that they jump vertically and spin in the air with their ears whipping 'round like helicopter rotors.

I just asked her to do two pages of handwriting practice, which usually results in a good deal of carrying-on and moaning... she didn't bat an eyelash. Grabbed the pages and found a place to work. LOL!

Still Sorting It Out Sometimes

I've had one of those dismaying realizations about myself - the kind where the idea is not new, but the implications suddenly become much more clear. A friend of mine, who works in the same field as I do, was talking to me about a deep insult delivered to her in the workplace by the management. As she's telling the story and pauses for my comment, I latch onto the part that would insult me - that the perpetrator is making an error and is forcing a stupid and wrong business process on my friend for which she will then be responsible. "No," she shouts, "don't you see what an insult this is to me in my position? How could they do this to me? They don't respect me at all." It turns out she's much more upset about their treatment of her in forcing something on her at all, rather than the fact that it's a flawed process with damaging consequences.

I realize that the timbre of my response, and her reaction, is connected to a couple of other times when a (female) friend has been annoyed or angry with me. Situations where I've focused on the problem rather than on the emotional response of my friend. I did realize (slowly) after the incidents I remember in the past, that my friends had NOT wanted me to help solve the problem, but just to listen. Or so I thought. Apparently it's taken me another twenty years to realize that I have to also be sure to respond to the emotional content that drove them to need to talk in the first place. My husband does this very well. Why am I only figuring this out now, and what am I supposed to do about it? How the hell do I know when the emotional content is more important? And, more importantly for the relationship, how am I supposed to show this? I do feel for my friends when they're upset, but I guess I'm not showing it correctly.

In response to this, my husband pointed out: "There are two parts to a problem like that. (1) the thrown stone, the cause of the problem. and (2) the broken window, the emotional effect. The latter can be addressed by saying to your friend, "And you feel.... fill in the blank with the emotion she is describing. Or usually your friend will do it herself."

Ah, I see how he has better command of this. It's that he's more analytical in his approach. So maybe in the argument we had yesterday morning, where I told him, infuriated, that he sounded exactly like a psychology textbook, the accusation was (a) perfectly true and also (b) not a valid criticism since it obviously works well.

It's as I pointed out to my friend yesterday. I'm really, really good at analyzing a situation or interaction and seeing motivations and reactions and implications - behaviors. I am not so good at acting appropriately within one. Or, I suppose, it's what another friend told me, that I shouldn't be a field anthropologist because I analyze people like they're bugs, and nobody's going to like that. Well, thank god I never intended to do ethnography in the field, which always struck me as a damned uncomfortable position to put everyone into. I was always more interested in the biological basis of behavior and social network analysis.

Character insight, theory of mind

One of the researchers on ASDs I had read said something about social skills, communication, and theory of mind having a swiss-cheese quality for aspies. Here are a couple of exchanges over the last day or so that I think might illustrate this. I post this because it was helpful to me to read accounts like this when I was first trying to figure out what was going on with Rosie's AS diagnosis.

Yesterday, I was reading The Princess Bride to Rosie. It was a section about the character of Prince Humperdinck; how he loved to hunt and kill things, and how he called his sweet, loving stepmother "E.S." for "Evil Stepmother" because the only stepmothers he knew were the evil ones in fairy tales.

"Huh." said Rose about the stepmother. "He sees her through, he calls her E.S. because he can only... he can see her through his..."

"Experience?" I said.

"Yes," said Rosie.

"Wouldn't his experience tell him that she was really nice?" I asked.

"No, no, not experience then, I mean... he only sees her through himself. He judges her by his own evil."

I was a bit speechless.

"What?" she asked. "You have the expression on your face of being surprised because I said something unexpected."

"Well," I said slowly, "that's an... um... unusually sophisticated insight into his character."

She made the noise that ends up being written "Pshaw!" and said "He's just an evil man, that's all. Come on, keep reading!"

For nine, that's a pretty damn complex analysis. So yeah, I was surprised.

Today, though, she had a meltdown in her writing class because she had not understood the teacher's expectations or instructions, and had been unable to realize that she could or should ask for clarification and help. I was massaging her back to relax her while she told me about it. "Can you scratch my shoulder?" she asked. I skritched at it. "Scratch where it itches!" she exclaimed.

I paused. "Rosie," I said.

"Mm?"

"Rosie, how do I know where it itches? How do I know that?"

She turned her face to me, a complete blank of puzzlement.

"Rosie, I don't know where it itches, because I'm not you. I don't know unless you tell me."

"Oh!" she said in a slightly embarassed tone. "Right. I forgot."

Which tells me that while she usually does remember that another person has a different perspective - and usually I see this play out in very insightful ways - it is definitely something that she has to work to remember.

I do recall that Rosie's older sister did not think this way, but I wish I could remember my own thinking at this age. Or read other examples like this of kids both NT and AS.

IEP Redux!

We received a phone call half an hour ago from Rosie's old school - it seems that since we're homeschooling through a county program ("technically" still public school) that the district requires an IEP every year. Wow. It was like my head exploded and flew around the room. My tension level just about hit the 36,000 foot mark, like a thermometer stretched up to clear the Himalayas. After spending the last half hour raging at everything that provides the remotest sense of tension or unpleasantness in my life, I think I've brought myself back down to a hover... oh, say about ten thousand feet maybe.

Gosh, it would be great to take a stack of cream pies to the IEP and pitch one into the face of every district clown that's going to show up.

Got Through the Holidays!

Well! The usual blend for Christmas - stressful, happy, peaceful, contentious. No great miseries and a good amount of fun, so I call it successful. Hopefully I'll find a day to take down the decorations this week!

Today was the kicker, though - I had a panic attack on the freeway, the first one I'd had in a while. I had commuted long distances daily on crowded freeways for several years, a few years ago, and after a while I just could not cope. In my disbelief over this "weakness" I continued commuting until I manifested all kinds of physical and psychological symptoms, and really have not ever gotten over this. I gather that this was just about literally my neuroreceptors burning out from the stress hormones. It took this period in my life to recognize that the tendency to anxiety issues on both sides of my family actually applied to me, too. I've avoided freeway driving since, especially into the city.

But this panic attack today caught me by surprise. I'd driven into the city twice last week as well as yesterday, and I was fine, though it was a little tiring. Today, I started to notice a stressed state of mind before I left - mostly manifesting as anger leaking out onto available issues, but I could tell that it was related to the anticipation of driving. While driving I had a short burst of despair/depression that I was able to connect to the freeway trigger, but it was brief. I was just telling myself a few minutes after that, that because I could observe these things, I should be OK as long as I didn't drive this distance more than two days a week, when the traffic started to slow and close in, and that's when I just completely lost my hat and freaked right the hell out. Wow.

I got home in fits and starts and a long stop in a bookstore. I took a 'nice cup of tea' there because I know that black tea reduces the cortisol levels in the bloodstream. Got home eventually, but was still feeling pretty clenched up (could not swallow!) until I downed that old standby, the .25 mg of xanax. I have extraordinarily conflicted feelings about the xanax. On one hand, it has been a godsend the last couple of years once I got over my initial reluctance to take anything, because I have not found relaxation techniques I have used in the past to be at all effective. It would have helped me through the Bad Commuting period of my life if I had been willing, though it also might have prolonged it. But I hate - hate! HATE! the idea that I go running for a chemical remedy, even in tiny controlled doses. I'm not even sure it's the chemical I object to - because it does stop the cycle of stress damage; in that sense it's not much different than taking a 'nice cup of tea.' (More effective though!) It's the idea that I am, in any sense whatsoever, dependent on a "drug" to control my state of mind. (Though xanax is addictive, I'm not worried about that kind of dependency. I've hoarded forty .5 mg pills over the last year and a half without making much of a dent in them; physical dependency is clearly not a problem I have.) Maybe I'm making too big a deal, but OK, let me just register my opinion on this thing: I don't like it, damn it.

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.