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.