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.
Monday, November 26, 2007
Friday, November 23, 2007
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.
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.
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.
Wednesday, November 21, 2007
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.
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.
Friday, November 16, 2007
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?
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?
Wednesday, November 7, 2007
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.
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.
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