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.