Lining Up Toys

One of the things I kept dismissing the past few months in thinking about any of the early indicators of autism with Rosie was this thing about kids playing with their toys by lining them up instead of using them as the manufacturers intended. I don't remember her doing that (though I remember it in my brother!) and so I figured it was one of those things she didn't ever manifest. After all, she plays imaginatively with toys, incorporating them into little stories. (Though it was always really hard, if sometimes downright impossible, to get her out of her imaginary world before age 6 or so.)

We were looking at the family picture album, though, and I saw that she did line toys up to some extent, more than I thought, though I don't know what would be considered a "typical" amount of lining up. We gave her stickers a few times when she was little, until we learned what she would invariably do with them. She would always line stickers up on her legs, the carpet, or the furniture or walls, and that was that. Trying to get her to create scenes with them or put them into a book or otherwise preserve them was pointless. We couldn't get her to understand where appropriate places for stickers would be. She didn't care about whether they were pretty or interesting at all. I remember that being a bit puzzling, since her older sister always wanted to save the pretty stickers when she was that age. Somehow, I identified that disinterest in keeping stickers with how Rosie always let helium balloons go instead of trying to keep them.

Likewise, I also noticed/remembered in the family pictures that Legos were generally geometric arrangements for Rosie, not representations of buildings or animals or whatever, until age 6 or so. But that makes at lot of sense, doesn't it? Legos lend themselves to geometric arrangement, especially symmetric arrangement. Do "neurotypical" kids always, always create "things" out of Legos instead of arranging them aesthetically? Rosie creates "things" out of Legos nowdays, though I do notice some "perseveration" - really extensive airports with a dozen or more airplanes and long runways, fleets of ships and boats that make their way into drawings and chants and poetry.

When I notice myself starting to use "quote marks" a lot, I think it's a hint that I'm starting to wonder... what's so darn unusual about this way of thinking, anyway? Er, it's just all that engineering and accounting blood in our family.

Sensory issues

I'd thought that Rosie didn't have many sensory issues, but a recent spate of them has proven that thought wrong. Before a holiday gathering at someone's house, she grew very agitated, worried about the crowd of people, the family's dogs, and obsessed with the idea that no one would want to play with her. She found the car seat too hard, her shoes too tight, and her fur-lined sweatshirt jacket unwearable because of the hard plastic zipper. She couldn't wear her jeans and had to switch to sweatpants; the tags in her underthings were too scratchy. We could not wash her face at all and the light was too bright. We ended up not going. On Christmas day, overwhelmed by guests and noise, she finally withdrew and sat on the couch hypnotically rubbing a soft piece of foam across her nose and cheeks. Which looked soothing even to me, actually. She tried to use the foam to settle her young cousin down by rubbing it on his face, but he wasn't having any of it.

I have to consider whether it's holiday excitement overall that is raising her level of sensitivity (on just about everything, not just sensory issues) but I find myself wondering if she is, as her grandmother asked us, "getting worse." It certainly seems as though last year we didn't encounter these things - or perhaps if we did, I dismissed them as overexcitement and whinyness in a somewhat high-strung kid. I think that school is much more stressful for her this year than last, though, even without the bullying, and perhaps it can contribute to her overall tension even during the holiday break.

On the up side, relatives are encouraging her interests, and she got an avalanche of science-related gifts for Christmas. She's in absolute nirvana, growing tadpole shrimp in a tank (though she had to read the directions to be convinced that they were not, in fact, sea monsters per the box), looking at blood cells and live bacteria under her new microscope, taking digital time-lapse photos of the cat, putting together electrical circuits to light a bulb. She even steeled herself to play Operation despite the horrible buzzer, once she realized that it was an electrical circuit that closed the buzzer connection.

Routines and resources

Well, the school assessment is still dragging on, so it'll probably be January before there's anything recommended or concluded. In the meantime Rosie plays by herself at recess: "As usual," she says when asked. She feels a little lonely throughout the day, she adds. Sometimes she tells me that she plays with one of the kindergarten children who is her friend, but I'm not sure if this is imaginary or not.

There was a garbled tale of the school psychologist getting her to destroy her imaginary friends in some therapy session, so I've been trying to get hold of him to hear what this means. If it's true, I'll be pretty damn ticked off. She's quite clear on her imaginary friends being imaginary and if it helps her get through the day, good for her. It's adaptive.

We've worked a massage into the going-to-bed routine, which seems to help settle her down for the night. "Ow," she said tonight. "Don't press too hard over my radius."

"Your what?" I asked.

"Radius," she said. "The smaller bone in the arm."

"Yes, OK," I said. "Are you memorizing all the bones?"

"Yes," she giggled.

"Good for you," I said.

"Make sure my blanket covers my femurs," Rosie said.

"Oh, your femurs are well-covered," I said. "I'm just trying to tuck in your phalanges."

Much laughter.

A few days ago, someone uploaded a rather great talk by Temple Grandin to YouTube.
http://youtube.com/watch?v=bgEAhMEgGOQ Highly recommend it!

Support meeting

Well, I attended an asperger's/HFA/PDD support group meeting this evening, which I didn't really get much out of. I was hoping for something a bit more proactive and informative - I'm not really looking for a group of parents sitting around objectifying their children and comparing behavioral notes. I mean, there's a thread of interest in hearing how other kids are manifesting their differences, but I was a bit shocked at how some of the parents view their own kids, or view people on the spectrum. "Those people," they were saying, talking about their own kids - not to mention the adults around them - as though they belonged to some other species with absolutely incomprehensible thoughts and motivations and emotions. It was totally weird and really offputting. I wanted to shake one or two of them.

But then, I think it's possibly a result of the dilemma in which I find myself. I don't particularly want the school district's assessment of Rose, or their "help." The problem is that the condition of thinking differently in this way is medically diagnosable. Sometimes it's caused by, or related to, things that 'go wrong.' So, other than the potential medical complications, why does it need to be quantified and treated in order to be accepted, to deal with it? Why (in an idealized world) can't people just note that So-and-so has these particular cognitive traits, which explain certain behavioral differences and certain strengths and weaknesses, and move along?

I don't know that I'm being particularly coherent, or logical. Mostly I'm shocked at seeing how some parents distance themselves from their kids on the spectrum. I mean, many of Rose's traits look a lot like mine, somewhat enlarged. I have several relatives who also have these traits, even more so, actually. Have these parents never looked at themselves? Or do they feel it's too stigmatizing? That just makes me mad.

school difficulties

Sometimes I don't know if I'm doing the right thing. After a week off for T-day, Rose cried so much when we tried to get her up to go to school that we let her stay at home. I missed a day of work. She hates school - alienated from other kids, stressed by "too many tests," time limits on work periods and by a noisy classroom - and because she's also very bright, utterly bored and frustrated by the everyday grind of school.

"I hate the stupid natural resources," she said. "There aren't any natural resources in school. Why can't we go to a real forest? I'd be able to see it much better." Er, good point. I tried to point out some of the natural resources near our home, but "That was last month!"

She also feels like homework is like school chasing her home - more stress just when she's reached her refuge. Well, it is, I can't disagree. She wants to be homeschooled, and we've been thinking that we'll get to that point sometime this year. I'd rather it was sooner, but I've been holding out hope that the school district's assessment of her will be helpful - in what way, I don't know. If I think I can do a damn sight better 'equivalent education' at home, then what is the point? Counseling? Resources?

Rose did some great diagrams of an idea she had for a human-powered helicopter today - left, right, top, bottom views and a closeup view. I loved them. "I can tell you're happy," she said. "How?" I asked. "Your mouth is smiling a look at me," she replied.

Perseveration

Rosie's cousin observed out loud that Rosie 'talked funny' today, but as far as I could tell, the family festivities went well for her. She played with her cousin for hours and it seemed to work out well. It helps that her cousin's younger - just turned 5 - and Rosie at nearly 8 can take a somewhat bossy role - the play goes 'her way.' I don't know that this will work in the years going forward, but in the meantime it does and she got some much-needed socialization.

The difficulty of course is that it was completely overstimulating for her, and so when we finally got her packed off to bed it took two hours for her to unravel all the strain of the day. After four courses of weeping and a wrangle about the fan being off and a lost 'lucky' bead, she finally dropped off. The fan, of course, goes round and round most soothingly, but it's freezing cold. The bead was more difficult - she's been clutching 'lucky' objects lately, usually bits of ribbon or small shiny things like quarters or in this case a silver bead. She kept losing it in the bed, setting off another storm of weeping and desperation, until her dad and I finally got some clear packing tape and taped it to her pajamas. Fantastic - all better. Asleep in five minutes, once she didn't have to worry about it.

I can envision a night in the not-distant future where the kid goes to sleep covered head to toe in 'lucky' beads, ribbons, and small sticks and rocks, stuck with tape. Like a juvenile what do you call it, katamari.

Lip-stiffener

Well, 2 half-Xanax got me through Thanksgiving, and that's something I never in my life thought I'd say. I never thought I'd ever agree to taking meds for stress under any circumstances - hell, everyone has stress, so you just buckle down and get through it, right? I'll have to reflect more on this later. I kept a stiff upper lip for 8 years and then suddenly I was out of lip-stiffener, like running out of gas on the highway. Some days I feel like such a whiner and such a complete dip for relying on these drugs. I've been on Effexor and the occasional Xanax for about two months.

Two months - maybe I should actually give myself a break there, come to think of it. The problem being that now that I'm feeling stronger, I want to dump the drugs, of course. Considering that I just got the news that I'm losing my job to a layoff at the end of the year - or perhaps in March if one more project can be squeezed out - maybe I should just hold tight.

The last week has been rather hellish at work. Motivation is a little hard to come by and I'm having these frequent intensely depressive dips during the afternoon. I should make a point to remember what these were like before I started taking the Effexor - hours of sitting in my cube fighting to remain focused and not break down sobbing - and keep the drugs on board for now.

Dr Visit

Our third trip to see the psychologist. Rosie didn't want to go - first because it was Wednesday, when Monday was 'supposed to be' her day. Then changing clothes was problematic. Her socks wouldn't go on perfectly straight which nearly caused another meltdown. Shoes - I didn't have the ends of the velcro match up perfectly (because matching them up makes the shoes too tight!) and that was terrible. Then her favorite jacket was still in the dryer and she had to wear a different one. At last all these things were overcome, though she had to bring a stuffed animal to make the ride OK.

During the visit Rosie enumerated things that she hated, #9 being "Being taken against my will to places I don't want to go." We established the ways in which she tries to avoid talking about uncomfortable things like school and whether she has friends, or confusing interactions with people. She explained that she really disliked being interviewed in this way. The dr gently kept bringing the topics back around - and Rosie became more and more agitated until she was in constant motion, flinging herself around the room and on the floor and holding her hands over her ears. After she'd approached the doctor a couple of times, going up to her to grimace and express herself or make noises at her and then retreating and returning, I suddenly recognized that this was threat behavior - she was working herself up to being aggressive with the doctor. I sort of flashed back to a couple of months ago when she spat lemonade in her aunt's face after having been pursued for hairbrushing, and we ended the session.

Medical ...

Finally got my daughter to her pediatrician, who has a special research interest in developmental disorders. I have no idea why it didn't occur to me right off the bat; instead I was talking to a psychologist first.

Yes, he thinks it's Asperger's, preliminarily based on her eye contact avoidance, repetitive hand motions, and repetition of phrases. He's waiting for the school's workup, since they have a better opportunity for observation, and in the meantime he ordered a slew of tests. Diabetes, lipids, metabolic panel, CBC - and high resolution chromosome and fragile X DNA tests.

That seemed like an odd array, but I didn't get the chance to ask him about it, since he was squeezing us in between other patients. So I went web-hunting to see what he was up to, and it looks to me that he's trying to rule out some things like childhood disintegrative disorder, which appears to sometimes be caused by toxic lipid buildup, and fragile x, which can look like autism when partially expressed. I feel relieved that he's looking.

I worry about that CDD business; her thinking - or at least her communication - the past few days has been disorganized to the point where I started a creeping worry about childhood schizophrenia. A lot of what she was saying seemed to make no sense whatsoever - utterly random half-thoughts. She also appeared at one point to be talking to someone not there - not in the usual way, where she talks intensely to herself about whatever story, play, or fantasy she's inventing, but in a way where she was actually addressing someone. I asked her about it and she said she was talking to her cousin. "But she's not there," I pointed out, and Rosie appeared to be confused.

Do the intensity of autistic symptoms wax and wane in asperger's kids? I don't even know. Rosie has been especially asperger-y the past few days and I'm obsessing over trying to figure out what might have triggered it. Stress? emotions? Something she ate or didn't eat? What do I do?

Adjusting

A lot of the initial panic / distress has died down over the last few days, and facing a diagnosis is looking more manageable. We're looking at Asperger's for my seven-year old. We've had one appointment with a psychologist, who hasn't been able to draw any conclusions yet, and have set up an assessment to be done at her school. But we know what we're seeing. It's only really a degree of "how much" and what areas she'll need help with.

Looking at the genetic factors, I'm hardly surprised. Engineers and programmers on both sides of my family and her father's, too - and several undiagnosed relatives we suspect are on the autism spectrum. We thought about the possibility that she might have the same issues when she was younger, but she was so very verbal that we ultimately missed the other cues. We have a high tolerance for quirky personality traits in our family, so it just seemed that she had a more strongly defined personality than most... which of course is still delightfully true, it's just that there's the getting-along-at-school factor and the developing-friendship factor that she'll need help with.

I had a hilarious moment this evening listening to my daughter and her dad - he was holding forth on some topic at length, going on in his own pedantic vein, and she interrupted him with "Could you stop talking now? I'm not really interested in what you have to say on this subject." Oh, man. That was great. I find everything she says so terrific that I'm afraid that I sometimes miss opportunities to help her adjust her outspoken behavior. Uh, I guess it's rudeness to everyone else. :/ Perspective adjustment in order for me, I guess.

The obligatory Hello World

Not that I think I have anything particularly special to say - but mostly, because I've read the blogs of perfect strangers that in the reading, helped me feel less isolated though I never let them know or struck up a dialogue.

Plus my handwriting is illegible, so forget that special leatherbound handcrafted paper journal nonsense.

We've just started the process of diagnosing our youngest child with some kind of developmental disorder, and it's terribly alarming and confusing. In a way, it's like the other shoe has finally dropped - she was six weeks premature and I was surprised to not see something more than asthma as a result. But here it is at last. I have suspected something with her sensory input for some time - eyes and ears.

RuthX