Rosie and I went to a kids' adaptation of a wonderful symphony, complete with storyteller and visuals. It was a double orchestra, both youth and the regular, and it was a terrific introduction to "how to do a symphony/concert/musical event." When to clap, when it was ok to talk, how the first violin and the conductor are honored by walking on by themselves, the encore. I hadn't really thought about the formal pattern of the event until I saw it through the kids' eyes.
There were booths in the lobby of the hall afterwards so the kids could see and touch the instruments and ask the young musicians questions. It was all wonderful, until... the symphony's sponsor gave away a rather nice recorder to every single child there.
Every single child. Yes. Three hundred and more little kids with recorders, simultaneously tootling and shrieking, in a huge, echoing space. After about twenty minutes, I literally had shudders running up and down my back that I was doing my best to suppress. I thought I was going to cry. I was doing all I could to not burst into tears. And we stayed half an hour after that! because Rosie could not bear to leave all the fun. I know what my personal hell involves now.
Inexplicably, the incredible din bothered Rosie not at all. Or to be honest, if it did, I was too traumatized to tell. If I had remembered to put in the earplugs I keep in my purse it might have helped, but no. I couldn't remember that I had them. When we went home I looked in the mirror and saw that I was pale and waxy, with bruises under my eyes so dark I looked like I had been punched twice. Yeeg. I put in earplugs then, because my ears were - not exactly hurting, but they couldn't stand any more sound. Then I pulled pillows over my head and crashed for two hours.
When I came out of the bedroom, Rosie said, "Mom! I want to learn to play the recorder!"
Sunday, February 10, 2008
Friday, February 1, 2008
IEP
Well, nine hours since Rosie's IEP meeting at her old school, and her dad and I are still practically twitching with irritation. No doubt I'll be doing it every time I read the assessment report. That official language is pretty loaded: disability, maladaptive, impairment, at-risk, deficits. It's definitely not couched in terms of objective language - a child's strengths and weaknesses. An IEP meeting is where the results of the school assessment are presented and discussed and an individualized educational plan offered, which lists accomodations for disability and specific therapies the school district will offer.
One point of strain has been in recognizing some of the inconsistent behavior of the school team. They were pushing their agenda fairly hard, which is that they disapprove of our taking Rose out of a mainstreamed classroom. For the school psychologist, the main issue seems to be that he thinks that keeping her in school is what provides her with opportunities to practice social interaction and allows her access to social skills therapy. This from the guy who told her to try harder to make friends, resulting in her going out and attempting to play with kids who roundly rejected her. I'd like to know how he thinks keeping her in a pressure-cooker situation socially is going to help her. Everyone who is open to admitting it knows how vicious a passel of kids is, particularly on the playground. She's marked out as different already. How is forcing her into this on a daily basis going to help her cope with both learning how to socialize and how to deal with rejection and other situations? For that matter, how is the schooling model used over the last hundred years or so at all normal or positive? Oh, that's something for another rant.
Another inconsistency that has me grinding my teeth is that they kept dangling this offer of both group social skills therapy and individual help at making friends, using the buddy system - if we'd keep her in regular school. This was first brought up in mid September. They didn't do a damn thing to help her all the way through the end of December. If they could see perfectly well that she was unhappy and struggling and that she needed a buddy, why didn't they help her? That doesn't require a diagnosis or permission for therapy of any kind - which they also had by the beginning of November. Their intern told me they wouldn't have group social skills therapy because there weren't other kids who needed it. The team - psychologist, teacher, principal, speech therapist - saw that she was struggling to make friends and didn't do anything to help her, though they outlined from the beginning what they ought to do.
We were so grateful for the representative from the home school agency who came to explain the homeschool program to the team, and brought the report from Rosie's supervising teacher that she was thriving and that she thought Rosie would finish all her second grade work early. It countered wonderfully her classroom teacher's emphatic, bristling, angry comments about how Rosie couldn't finish work, melted down or refused to do work with a time limit, was defiant, and had produced very little work from the beginning of the term to the time when we took her out. If we have another IEP - say, at the county level, or if she ever returns to the regular classroom - I really want to have a psychologist who specializes in autism and an advocate present.
I think I'll be snorting steam from both nostrils over this for a while yet, even considering that I have nothing to sustain that anger at this point. The attitude that Rosie was a nail sticking up that must be hammered down is just infuriating. No true sense of accepting or accommodating differing abilities or cognition.
The home school representative asked us on the side why we went ahead with the IEP at all, since we had already decided to pull her out of the classroom. Three reasons, really: firstly, her pediatrician, who's a specialist in developmental disorders, is relying in part on the assessment to help him get a baseline, and I want to see if any therapies are available to us through the agencies he's a part of; second, getting this broad assessment helps us understand where her difficulties are so that we can help her better; and third, if she does ever return to a regular classroom, I want to be sure that she does get accomodations that she needs in that environment.
One point of strain has been in recognizing some of the inconsistent behavior of the school team. They were pushing their agenda fairly hard, which is that they disapprove of our taking Rose out of a mainstreamed classroom. For the school psychologist, the main issue seems to be that he thinks that keeping her in school is what provides her with opportunities to practice social interaction and allows her access to social skills therapy. This from the guy who told her to try harder to make friends, resulting in her going out and attempting to play with kids who roundly rejected her. I'd like to know how he thinks keeping her in a pressure-cooker situation socially is going to help her. Everyone who is open to admitting it knows how vicious a passel of kids is, particularly on the playground. She's marked out as different already. How is forcing her into this on a daily basis going to help her cope with both learning how to socialize and how to deal with rejection and other situations? For that matter, how is the schooling model used over the last hundred years or so at all normal or positive? Oh, that's something for another rant.
Another inconsistency that has me grinding my teeth is that they kept dangling this offer of both group social skills therapy and individual help at making friends, using the buddy system - if we'd keep her in regular school. This was first brought up in mid September. They didn't do a damn thing to help her all the way through the end of December. If they could see perfectly well that she was unhappy and struggling and that she needed a buddy, why didn't they help her? That doesn't require a diagnosis or permission for therapy of any kind - which they also had by the beginning of November. Their intern told me they wouldn't have group social skills therapy because there weren't other kids who needed it. The team - psychologist, teacher, principal, speech therapist - saw that she was struggling to make friends and didn't do anything to help her, though they outlined from the beginning what they ought to do.
We were so grateful for the representative from the home school agency who came to explain the homeschool program to the team, and brought the report from Rosie's supervising teacher that she was thriving and that she thought Rosie would finish all her second grade work early. It countered wonderfully her classroom teacher's emphatic, bristling, angry comments about how Rosie couldn't finish work, melted down or refused to do work with a time limit, was defiant, and had produced very little work from the beginning of the term to the time when we took her out. If we have another IEP - say, at the county level, or if she ever returns to the regular classroom - I really want to have a psychologist who specializes in autism and an advocate present.
I think I'll be snorting steam from both nostrils over this for a while yet, even considering that I have nothing to sustain that anger at this point. The attitude that Rosie was a nail sticking up that must be hammered down is just infuriating. No true sense of accepting or accommodating differing abilities or cognition.
The home school representative asked us on the side why we went ahead with the IEP at all, since we had already decided to pull her out of the classroom. Three reasons, really: firstly, her pediatrician, who's a specialist in developmental disorders, is relying in part on the assessment to help him get a baseline, and I want to see if any therapies are available to us through the agencies he's a part of; second, getting this broad assessment helps us understand where her difficulties are so that we can help her better; and third, if she does ever return to a regular classroom, I want to be sure that she does get accomodations that she needs in that environment.
Thursday, January 31, 2008
Family Trip to Fry's
Oh, what a nerd family joy - I got a contract check in and we had a shopping spree at Fry's. Yes, the echoing noise and the crowd and the hard floor make us all crazy, but still! Geek heaven. (Then an hour or two of very necessary quiet retreat for all of us when we get home.)
We lingered in the robot kit aisle. Rosie has been negotiating for a long summer break from school starting in July, which I don't think is a great idea. I suggested that we spend the summer building a robot instead. Rapture! She was spinny with joy. It will take no convincing to get her to write or do math revolving around robots. She was nutty on the subject even before she saw Asimo in person at Epcot.
I talked myself out of getting a wireless signal detector since I just picked up a widescreen monitor, but now I'm sorry. Phooey.
We lingered in the robot kit aisle. Rosie has been negotiating for a long summer break from school starting in July, which I don't think is a great idea. I suggested that we spend the summer building a robot instead. Rapture! She was spinny with joy. It will take no convincing to get her to write or do math revolving around robots. She was nutty on the subject even before she saw Asimo in person at Epcot.
I talked myself out of getting a wireless signal detector since I just picked up a widescreen monitor, but now I'm sorry. Phooey.
Monday, January 28, 2008
All too familiar...
I had to laugh, the last couple of days, over yet another new realization about how strong family traits can be. I've always had a bit of difficulty in social situations, but generally plow through OK once I brace myself. But I've been realizing that maybe my difficulty is a bit specific - maybe related to that shadow spectrum in the family.
Yesterday, I had a project kickoff meeting with a new project team, and I pulled a communication mistake I remember having made in the past many times - the vague self-introduction that leaves out my relevant background and anything else anybody might want to know about me, and includes at least one unintentionally cryptic reference that leaves puzzled looks on people's faces. I realized halfway around the introductions that I'd done it again, and tried to mend it once I got a chance. The rest of the meeting, I kept getting odd enough looks from the others that I knew something wasn't coming out right. I don't actually know what, though. It was a sort of a smut-on-my-nose, is-my-underwear-showing kind of feeling, but I think it was something about what I was saying or how I was saying it. I tried to make the rest of my comments extremely to the point, which took a little mental practicing.
And today, my older daughter was asking me to go on a short group trip with her, and cautiously asked, "Lot of new people to meet and talk to... are you OK with that?" I was a bit taken aback until I realized that she must actually have a reason for asking me in that way: I guess I avoid meeting new people. I don't think of myself as particularly avoiding people - I mean, I do presentations, I run meetings, I join groups, I have friends over - but heck... I guess I also avoid crowds, new people I haven't approached myself, and making phone calls. (For that matter, upon reflecting, I guess I have trouble with greetings and goodbyes, too - they make me tense enough so that I often avoid them. Including hiding when I recognize someone in public I would need to greet. Which I know is rude, but sometimes I'm too wiggy.)
Well, there's a training I'll be attending on how to do social skills training. I'd better not miss that, hehe.
Yesterday, I had a project kickoff meeting with a new project team, and I pulled a communication mistake I remember having made in the past many times - the vague self-introduction that leaves out my relevant background and anything else anybody might want to know about me, and includes at least one unintentionally cryptic reference that leaves puzzled looks on people's faces. I realized halfway around the introductions that I'd done it again, and tried to mend it once I got a chance. The rest of the meeting, I kept getting odd enough looks from the others that I knew something wasn't coming out right. I don't actually know what, though. It was a sort of a smut-on-my-nose, is-my-underwear-showing kind of feeling, but I think it was something about what I was saying or how I was saying it. I tried to make the rest of my comments extremely to the point, which took a little mental practicing.
And today, my older daughter was asking me to go on a short group trip with her, and cautiously asked, "Lot of new people to meet and talk to... are you OK with that?" I was a bit taken aback until I realized that she must actually have a reason for asking me in that way: I guess I avoid meeting new people. I don't think of myself as particularly avoiding people - I mean, I do presentations, I run meetings, I join groups, I have friends over - but heck... I guess I also avoid crowds, new people I haven't approached myself, and making phone calls. (For that matter, upon reflecting, I guess I have trouble with greetings and goodbyes, too - they make me tense enough so that I often avoid them. Including hiding when I recognize someone in public I would need to greet. Which I know is rude, but sometimes I'm too wiggy.)
Well, there's a training I'll be attending on how to do social skills training. I'd better not miss that, hehe.
Sunday, January 27, 2008
Sensory Issues... Weighted Blankets and Foam
I had to read the "sleep problems" questions several times over the last few weeks while filling out assessment forms for the IEP before realizing that maybe the difficulty Rosie has getting to sleep is actually a "sleep problem" and not just a kid who hates going to bed. So that's what all that complaining about the bed being uncomfortable was probably about! A combination of sensory issues and a busy mind, I think. I knew she was sincere about being uncomfortable and I was starting to think that we had a 'princess and the pea' situation going; I couldn't find a thing wrong with the bed and it's fairly new.
After getting Rosie a two-inch tempur-pedic foam mattress topper (set of two at Overstock.com! what a bargain!), she's been able to relax better when trying to sleep. It hasn't solved the problem completely, though, so when I ran across the weighted blanket idea a little while ago it sounded ideal. It looks as though these are really relaxing and helpful for autistic folks and kids with ADHD. It sounds pretty snuggly - heck, I want one.
I'm trying to decide whether to buy a weighted blanket or try to construct one myself. Most of the commercially made blankets seem to be filled with poly beads, which seem as though they'd be unwieldy to work with; my aunt suggested drapery weights, which come either in long strings or chains, or metal shapes prepackaged in a sewable fabric. Drapery weights might be a little stiff and difficult to wash, though. My aunt suggested sewing pockets into the top of the blanket so they'd be removable, but who wants velcro or other lumpy fastenings in a blanket that's meant to be soft and soothing?
After getting Rosie a two-inch tempur-pedic foam mattress topper (set of two at Overstock.com! what a bargain!), she's been able to relax better when trying to sleep. It hasn't solved the problem completely, though, so when I ran across the weighted blanket idea a little while ago it sounded ideal. It looks as though these are really relaxing and helpful for autistic folks and kids with ADHD. It sounds pretty snuggly - heck, I want one.
I'm trying to decide whether to buy a weighted blanket or try to construct one myself. Most of the commercially made blankets seem to be filled with poly beads, which seem as though they'd be unwieldy to work with; my aunt suggested drapery weights, which come either in long strings or chains, or metal shapes prepackaged in a sewable fabric. Drapery weights might be a little stiff and difficult to wash, though. My aunt suggested sewing pockets into the top of the blanket so they'd be removable, but who wants velcro or other lumpy fastenings in a blanket that's meant to be soft and soothing?
Saturday, January 26, 2008
"I'm glad I have Asperger's"
A direct quote from Rosie.
Because it makes her different, she says, and she likes being different. Although I think the smirk on her face when she turned away secretly said: better, not just different.
I contemplated quickly taking the opportunity of reinforcing different, since thinking oneself better is betrayed in so many ways to other people that it's definitely not any advantage in getting along to think so, not to mention that it's a false way of thinking - there's always going to be someone better than you are at something, no matter how intelligent or capable you are. It undermines one's sense of goal-setting and necessary work, too - I'm not expressing this terribly well, but having fallen into the same ego-trap as a child and young adult, I don't want her to make this mistake. I still fight a tendency towards intellectual arrogance; I'm hardly a dolt, but I'm as prone to making a mistake as the next person, and it's been one of the enormous lessons of my life. (Old dogs DO learn new tricks, thanks!)
However, I didn't correct her at this time. It's the first time I'm hearing pride in her difference instead of worry or confusion, and the last thing I want to do is squish that. Her unique gifts will take her far, I think, and there's time enough to seek a balance.
Because it makes her different, she says, and she likes being different. Although I think the smirk on her face when she turned away secretly said: better, not just different.
I contemplated quickly taking the opportunity of reinforcing different, since thinking oneself better is betrayed in so many ways to other people that it's definitely not any advantage in getting along to think so, not to mention that it's a false way of thinking - there's always going to be someone better than you are at something, no matter how intelligent or capable you are. It undermines one's sense of goal-setting and necessary work, too - I'm not expressing this terribly well, but having fallen into the same ego-trap as a child and young adult, I don't want her to make this mistake. I still fight a tendency towards intellectual arrogance; I'm hardly a dolt, but I'm as prone to making a mistake as the next person, and it's been one of the enormous lessons of my life. (Old dogs DO learn new tricks, thanks!)
However, I didn't correct her at this time. It's the first time I'm hearing pride in her difference instead of worry or confusion, and the last thing I want to do is squish that. Her unique gifts will take her far, I think, and there's time enough to seek a balance.
Friday, January 11, 2008
Wotta Week
So, this week we've been shifting from district public elementary school to county public homeschool, while trying to finish the assessment for the IEP. Today was really challenging - 2 appointments with the speech and language therapist and OT for Rosie and a meeting with the new homeschool teacher who'll oversee our work. Three new people to meet, two new locations, and a whole new routine approaching!
Rosie held up like a champ the whole day, though she was pretty nervous. By the evening, though, the strain started to tell and she was extremely reactive and emotional. She asked me to hug and squish her when I tucked her in, and pretend that she was a pillow, and I suddenly realized that this was the same kind of thing that Temple Grandin mentions about her squeeze machine. Rosie had a stressful day, and needed full-body squeezing to calm down. So I did, and it helped her tremendously. Wow! I'll have to look into getting a weighted blanket and see if that helps Rosie's stress levels.
I'm just starting to notice sensory issues with Rosie that I hadn't before. She's noticed and mentioned strong odors a few times in the last couple of days - maybe it's a heightened level of anxiety, or maybe she's more communicative than she used to be in the past. (She's always been talkative, but communicative - not so much.)
I keep wondering if these things I'm seeing for the first time are really "new" or if I'm just now knowing what I'm seeing. But then, I remember Rosie as a toddler. Another parent wrote on his blog about how his son lacked the "elastic band" that keeps typical kids coming back to their parents every few minutes when playing. He described how he followed his young son for more than half a mile down the beach, and the boy never looked back for his parents. Well, Rosie was like that. I followed her down the length of an entire mall once, also around half a mile, just to see if she would ever turn around and look for me, and she never did. So I reassure myself that yes, it was always there - the newness is mine.
Rosie held up like a champ the whole day, though she was pretty nervous. By the evening, though, the strain started to tell and she was extremely reactive and emotional. She asked me to hug and squish her when I tucked her in, and pretend that she was a pillow, and I suddenly realized that this was the same kind of thing that Temple Grandin mentions about her squeeze machine. Rosie had a stressful day, and needed full-body squeezing to calm down. So I did, and it helped her tremendously. Wow! I'll have to look into getting a weighted blanket and see if that helps Rosie's stress levels.
I'm just starting to notice sensory issues with Rosie that I hadn't before. She's noticed and mentioned strong odors a few times in the last couple of days - maybe it's a heightened level of anxiety, or maybe she's more communicative than she used to be in the past. (She's always been talkative, but communicative - not so much.)
I keep wondering if these things I'm seeing for the first time are really "new" or if I'm just now knowing what I'm seeing. But then, I remember Rosie as a toddler. Another parent wrote on his blog about how his son lacked the "elastic band" that keeps typical kids coming back to their parents every few minutes when playing. He described how he followed his young son for more than half a mile down the beach, and the boy never looked back for his parents. Well, Rosie was like that. I followed her down the length of an entire mall once, also around half a mile, just to see if she would ever turn around and look for me, and she never did. So I reassure myself that yes, it was always there - the newness is mine.
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