My youngest daughter got up this morning in a great mood. She’s always in a great mood when she gets up. I’m used to it by now, but always amazed because she gets up soooo early.
Anyway, I got on her about putting her hair pins in a box or bag instead of leaving them loose on the counter, where they regularly migrate to the floor, sink, drain, etc. I’ve been telling her to do this for a couple of weeks now, most recently last night, at which point she got up and went into the bathroom. I don’t think I was out of line in assuming that she went in there to put the pins in a bag. I was, however, mistaken, because this morning they were still all over the counter.
So I said, standing over her in the bathroom, with great drama, “Put your hair things in a bag!”
I got the look, and a highly indignant “I’m doing that right now!” as she grabbed a bag and started stuffing things into it. The shoulders turned away from me, the jaw clenched, the feet stomped. Silence deafening. Clearly I was so very out of line in telling her to do something she was obviously just about to do!
She stomped and huffed for a while, until she forgot to stomp any more.
Later this morning I went to the book store and bought a book she needs for class. She needed it today, or she would lose points for not bringing it. I ordinarily don’t run materials to school, but it was my fault she didn’t have the book, because she told me last Thursday she needed it for today and I promised I would get it.
I didn’t. I’m a forgetful mom sometimes.
Anyway, this morning when she asked for it I told her she would just have to say it was at home. She stuck her lip out a little bit, and said she would lose points anyway, but she didn’t even really get all that upset.
But I felt bad. She did what she was supposed to do. I was the one who needed points taken off.
So I went and got the book and delivered it to school in time for her English class. She threw herself at me with delight and told me “thank you thank you thank you” in that high pitched squealy voice she uses to denote extreme excitement and/or gratitude.
I need to point out that this is not my bipolar child. This is normal child bouncing wildly. How we tell the difference between normal and bipolar often escapes me. This is me, parenting teenager. They do grow up, don't they?
Monday, November 24, 2008
Friday, November 21, 2008
The magic of anxiety
Anxiety struck last night. My daughter was supposed to be inducted into an honor society at her school. I wasn’t able to go because of travel obligations with the other children, but her dad took her. She was excited about the event, and we had even rescheduled her therapy appointment so she could attend – turns out she needed the therapy more than the honor. She got all dressed up and looked lovely.
Then the ugly head of anxiety reared its head for some reason. She entered the room where the students were gathering and left about two minutes later. Her story to us was that it turned out she was supposed to be wearing black and white (which she wasn’t), that the kids were looking at her like she was a dork because she wasn’t dressed right, and that the teacher who was sponsoring the honor society gave her a disapproving look and sighed angrily. So she left, certain that if she had stayed the teacher would have “yelled” at her and was about to send her home anyway.
What I knew at the time was that the written note she had brought home told the students to dress “dressy” and gave some examples. It did not say they needed to be in black and white. I also knew – but only because I kept asking her until she finally answered – that my daughter had not actually spoken to either teacher in attendance, nor had either of them actually said anything to her.
Tonight I called the sponsor and asked what had happened. It turns out the kids were not required to be in black and white, although many of the band students had worn their band clothes, which are in fact black and white. And it further turns out that the sponsor hadn’t even seen my daughter in the brief time she was there. So not only was she dressed appropriately, there were other students not in black and white, and the teacher who was supposedly about to yell at her never even saw her.
Anxiety – the kind that psychiatrists treat, not the kind that makes me not sleep well before a big speaking engagement – is like that. Contrary to what it sounds like to those of who do not suffer from anxiety, my daughter did not lie about any of the events. She really truly believed all those things. But her “truth was made up of misinterpretations, incorrect assumptions, and added information that came completely out of her head to shore up the assumptions she had already made.
Her therapist calls this “distorted thinking.” So for example, when she saw many kids wearing similar outfits, she leaped straight to the assumption that they had done so because it was required. Then, based on that assumption, she “saw” the look of disapproval from the teacher. Then, based on the clear disapproval from the teacher, she jumped to the “logical” conclusion that she was about to be in trouble and banned from the event.
There were a lot of big jumps in a very short time, and she made no effort to slow down and check any of the information she was assembling. She knows she gets things wrong, but because everything is absolutely believable to her, she hasn’t yet learned when to doubt herself and check with someone else. It’s hard for me to watch this kind of thinking, because it is so incomprehensible. I can’t imagine going so far off track that what I believe doesn’t make any logical sense. But I’ve seen her do it over and over and over. When you point out to her that what she is saying or doing or thinking doesn’t make logical sense, you can see the confusion on her face.
It’s like watching a character in a movie that sees some magical act for the first time. They know it is unlikely, and yet they are seeing it with their own eyes. In my daughter’s case, she understands the illogic when you point it out, but rather than take that as a cue to think maybe she got something wrong, she takes it as a moment of deep confusion as to how something so illogical could be true.
My daughter's world is full of magical moments, but it's not the good kind of magic.
Then the ugly head of anxiety reared its head for some reason. She entered the room where the students were gathering and left about two minutes later. Her story to us was that it turned out she was supposed to be wearing black and white (which she wasn’t), that the kids were looking at her like she was a dork because she wasn’t dressed right, and that the teacher who was sponsoring the honor society gave her a disapproving look and sighed angrily. So she left, certain that if she had stayed the teacher would have “yelled” at her and was about to send her home anyway.
What I knew at the time was that the written note she had brought home told the students to dress “dressy” and gave some examples. It did not say they needed to be in black and white. I also knew – but only because I kept asking her until she finally answered – that my daughter had not actually spoken to either teacher in attendance, nor had either of them actually said anything to her.
Tonight I called the sponsor and asked what had happened. It turns out the kids were not required to be in black and white, although many of the band students had worn their band clothes, which are in fact black and white. And it further turns out that the sponsor hadn’t even seen my daughter in the brief time she was there. So not only was she dressed appropriately, there were other students not in black and white, and the teacher who was supposedly about to yell at her never even saw her.
Anxiety – the kind that psychiatrists treat, not the kind that makes me not sleep well before a big speaking engagement – is like that. Contrary to what it sounds like to those of who do not suffer from anxiety, my daughter did not lie about any of the events. She really truly believed all those things. But her “truth was made up of misinterpretations, incorrect assumptions, and added information that came completely out of her head to shore up the assumptions she had already made.
Her therapist calls this “distorted thinking.” So for example, when she saw many kids wearing similar outfits, she leaped straight to the assumption that they had done so because it was required. Then, based on that assumption, she “saw” the look of disapproval from the teacher. Then, based on the clear disapproval from the teacher, she jumped to the “logical” conclusion that she was about to be in trouble and banned from the event.
There were a lot of big jumps in a very short time, and she made no effort to slow down and check any of the information she was assembling. She knows she gets things wrong, but because everything is absolutely believable to her, she hasn’t yet learned when to doubt herself and check with someone else. It’s hard for me to watch this kind of thinking, because it is so incomprehensible. I can’t imagine going so far off track that what I believe doesn’t make any logical sense. But I’ve seen her do it over and over and over. When you point out to her that what she is saying or doing or thinking doesn’t make logical sense, you can see the confusion on her face.
It’s like watching a character in a movie that sees some magical act for the first time. They know it is unlikely, and yet they are seeing it with their own eyes. In my daughter’s case, she understands the illogic when you point it out, but rather than take that as a cue to think maybe she got something wrong, she takes it as a moment of deep confusion as to how something so illogical could be true.
My daughter's world is full of magical moments, but it's not the good kind of magic.
Wednesday, November 12, 2008
I Can Do It - I Always Have
I'm hiding in my bedroom right now. I probably should say I'm taking a break, but the truth is I'm hiding. My bedroom has a lock, and I'm using it.
My autistic teenager was in full autistic bloom when he got home from school today. Not the loud, raging, scary kind of autistic, but the inconsolably obsessive kind of autistic. In a way it was sweet, because the thing he is obsessed about is the fundraiser for Autism Speaks that we are going to this coming Saturday. But even as sweet as that is, his need for me to read the poster to him and say that we are going on Saturday again and again and again ( by which I mean about every 30 seconds, aka constantly without a breath in between) outwore my very practiced patience.
My family has been fundraising for this event. The organization funds research and services for autism, and I have seen first hand the benefits of our ever increasing knowledge about autism. My son is 14, was diagnosed right around his second birthday, and in the 12 years we have been doing autism things, the information about how they think, how they learn, and how they act has increased exponentially, much to his - and our- benefit. There is still a long way to go, but here's a brief rundown of then and now in the life of my son. I warn you - if you do not live in close proximity to a severe autistic, the details are brutally unglamorous, but this is real life for many families. We don't talk about some of these things to "outsiders," because they are almost unbelievable unless you've lived them, but here I speak uncensored.
Then - he slept about three hours a night. Total, not consecutive. Needed to be supervised constantly or either destruction or disappearance into the dark of night would result.
Now - he sleeps eight hours most nights, and on the 2-3 nights a week he is up for extended periods of time, he mostly will stay in his room (a hard fought battle to teach him that) and while an adult still needs to be semi-conscious if he is up "just in case," it can be done without getting out of bed most nights thanks to deliberately un-oiled door hinges that let us track his movements through the house.
Then - constant supervision was the goal. Taking your eyes off him for even 30 seconds meant everything in the pantry might be on the floor, or the curtain rods would be pulled from the walls, or something like a candle, magic marker, or crayon would be in his mouth with big chunks eaten out of it. Two adults needed to be home in order for one of them to take a shower. We went to the bathroom with the expectation that we would spend the following 20 minutes cleaning up something in the house.
Now - He rarely gets into forbidden things anymore, and does not need to be watched constantly. He will still break things or make messes, but that is now rare rather than our daily life. Adults can go to the bathroom with returning to disaster.
Then - Anything colorful, liquid, soft, foamy, or not food that would fit in a mouth would be eaten. This includes all bath products, all glue products, chapstick, lip gloss, glitter, playdoh, snowglobe insides, baking powder, uncooked pasta, pillow stuffing, and pots of houseplant dirt. My girls spent their early years having to ask me unlock the cabinet in their bathroom whenever they needed soap, lotion, shampoo, etc. They loved lipgloss like all little girls, but generally only got to use it once before their brother would sniff it out and eat it. They learned to feed themselves later than most kids because all food was kept in a locked pantry.
Now - he will still occasionally eat a bottle of lotion or some shampoo, but if they forget to lock it up right away he usually won't touch it. The only thing we still can't keep in our house at all is glue and playdoh.
Then - screaming, running at top speed, jumping and flailing were his only form of communication. You can imagine how stressful the house was not only because he was constantly doing those things, but because he stayed so frustrated when we (understandably) failed to know what he was trying to tell us.
Now - he communicates with a few words, which are mostly difficult to understand, but he supplements with pointing or spelling, and also will write out words on a keyboard most of the time. He stays calm when he "talks" to us, and doesn't get very frustrated if we don't understand immediately. He'll even try different ways to tell us if we're not getting it.
Then - His one and only goal for school was to stay attentive long enough to be able to learn something.
Now - he can read many words, do simple arithmetic, write his name (not legibly, but still . . . ), follow instructions, complete routine tasks, and help out with chores.
Then - toileting was a nightmare. As with many autistic kids, he pooped constantly. Six, seven times a day most days, sometimes more, often very loose and runny. Many times it ran out of the diaper and he'd continue to do whatever he was doing. If it wasn't totally runny, he would often play with it or eat it. Since he also refused to keep clothes on at home, we would have to clean poop several times a day from couches, floors, walls, bedding, switchplates . . . Mornings were incredibly stressful because we had to race to try and get up before he did. If we didn't, we'd often have to mop, wash walls, clean upholstery, etc first thing. Between poop cleaning and the general mess cleaning mentioned earlier, we rarely had time to do ordinary cleaning. Keeping up with the crises was about all we could do.
Now - he still wears diapers and will not use the toilet, but I haven't bought upholstery cleaner in over a year, morning is not a race to beat him to his diaper, and he doesn't smear poop anymore at all, though there is sometimes a little leakage from the loose stools he still has. But since he will keep clothes on all day now, a change of clothing will usually take care of the mess. And yes, he still eats his poop, but not all the time. And as gross as that sounds, it is a vast improvement.
Our lives are not "normal," and much of our day is still dictated by what our autistic son will and will not tolerate. But we find now that with preparation, we can do many things we never thought we would be able to do with him, and this is all thanks to the influx of information about autism that has come in the last ten years. I have hope that he will be able to live a useful life outside of a residential center, which did not seem possible even five years ago.
So our family has been raising money for autism research. Because it is making a huge difference. And I'll be out of the bedroom in a few minutes, because that's just my life.
My autistic teenager was in full autistic bloom when he got home from school today. Not the loud, raging, scary kind of autistic, but the inconsolably obsessive kind of autistic. In a way it was sweet, because the thing he is obsessed about is the fundraiser for Autism Speaks that we are going to this coming Saturday. But even as sweet as that is, his need for me to read the poster to him and say that we are going on Saturday again and again and again ( by which I mean about every 30 seconds, aka constantly without a breath in between) outwore my very practiced patience.
My family has been fundraising for this event. The organization funds research and services for autism, and I have seen first hand the benefits of our ever increasing knowledge about autism. My son is 14, was diagnosed right around his second birthday, and in the 12 years we have been doing autism things, the information about how they think, how they learn, and how they act has increased exponentially, much to his - and our- benefit. There is still a long way to go, but here's a brief rundown of then and now in the life of my son. I warn you - if you do not live in close proximity to a severe autistic, the details are brutally unglamorous, but this is real life for many families. We don't talk about some of these things to "outsiders," because they are almost unbelievable unless you've lived them, but here I speak uncensored.
Then - he slept about three hours a night. Total, not consecutive. Needed to be supervised constantly or either destruction or disappearance into the dark of night would result.
Now - he sleeps eight hours most nights, and on the 2-3 nights a week he is up for extended periods of time, he mostly will stay in his room (a hard fought battle to teach him that) and while an adult still needs to be semi-conscious if he is up "just in case," it can be done without getting out of bed most nights thanks to deliberately un-oiled door hinges that let us track his movements through the house.
Then - constant supervision was the goal. Taking your eyes off him for even 30 seconds meant everything in the pantry might be on the floor, or the curtain rods would be pulled from the walls, or something like a candle, magic marker, or crayon would be in his mouth with big chunks eaten out of it. Two adults needed to be home in order for one of them to take a shower. We went to the bathroom with the expectation that we would spend the following 20 minutes cleaning up something in the house.
Now - He rarely gets into forbidden things anymore, and does not need to be watched constantly. He will still break things or make messes, but that is now rare rather than our daily life. Adults can go to the bathroom with returning to disaster.
Then - Anything colorful, liquid, soft, foamy, or not food that would fit in a mouth would be eaten. This includes all bath products, all glue products, chapstick, lip gloss, glitter, playdoh, snowglobe insides, baking powder, uncooked pasta, pillow stuffing, and pots of houseplant dirt. My girls spent their early years having to ask me unlock the cabinet in their bathroom whenever they needed soap, lotion, shampoo, etc. They loved lipgloss like all little girls, but generally only got to use it once before their brother would sniff it out and eat it. They learned to feed themselves later than most kids because all food was kept in a locked pantry.
Now - he will still occasionally eat a bottle of lotion or some shampoo, but if they forget to lock it up right away he usually won't touch it. The only thing we still can't keep in our house at all is glue and playdoh.
Then - screaming, running at top speed, jumping and flailing were his only form of communication. You can imagine how stressful the house was not only because he was constantly doing those things, but because he stayed so frustrated when we (understandably) failed to know what he was trying to tell us.
Now - he communicates with a few words, which are mostly difficult to understand, but he supplements with pointing or spelling, and also will write out words on a keyboard most of the time. He stays calm when he "talks" to us, and doesn't get very frustrated if we don't understand immediately. He'll even try different ways to tell us if we're not getting it.
Then - His one and only goal for school was to stay attentive long enough to be able to learn something.
Now - he can read many words, do simple arithmetic, write his name (not legibly, but still . . . ), follow instructions, complete routine tasks, and help out with chores.
Then - toileting was a nightmare. As with many autistic kids, he pooped constantly. Six, seven times a day most days, sometimes more, often very loose and runny. Many times it ran out of the diaper and he'd continue to do whatever he was doing. If it wasn't totally runny, he would often play with it or eat it. Since he also refused to keep clothes on at home, we would have to clean poop several times a day from couches, floors, walls, bedding, switchplates . . . Mornings were incredibly stressful because we had to race to try and get up before he did. If we didn't, we'd often have to mop, wash walls, clean upholstery, etc first thing. Between poop cleaning and the general mess cleaning mentioned earlier, we rarely had time to do ordinary cleaning. Keeping up with the crises was about all we could do.
Now - he still wears diapers and will not use the toilet, but I haven't bought upholstery cleaner in over a year, morning is not a race to beat him to his diaper, and he doesn't smear poop anymore at all, though there is sometimes a little leakage from the loose stools he still has. But since he will keep clothes on all day now, a change of clothing will usually take care of the mess. And yes, he still eats his poop, but not all the time. And as gross as that sounds, it is a vast improvement.
Our lives are not "normal," and much of our day is still dictated by what our autistic son will and will not tolerate. But we find now that with preparation, we can do many things we never thought we would be able to do with him, and this is all thanks to the influx of information about autism that has come in the last ten years. I have hope that he will be able to live a useful life outside of a residential center, which did not seem possible even five years ago.
So our family has been raising money for autism research. Because it is making a huge difference. And I'll be out of the bedroom in a few minutes, because that's just my life.
Tuesday, November 11, 2008
Not All Holidays Are On Monday
But most are.
My kids' schools were closed yesterday - I thought for Veteran's Day. And I guess it could have been for Veteran's Day, but then it turns out that today, Tuesday, everything else is closed for Veteran's Day. So the bank and post office chores I put off yesterday in favor of staying home and playing with my kids won't get done today, either.
Yay! A kind of vacation day just for me, since my kids are at school. After all, it's not my fault I can't get my work done, right?
My kids' schools were closed yesterday - I thought for Veteran's Day. And I guess it could have been for Veteran's Day, but then it turns out that today, Tuesday, everything else is closed for Veteran's Day. So the bank and post office chores I put off yesterday in favor of staying home and playing with my kids won't get done today, either.
Yay! A kind of vacation day just for me, since my kids are at school. After all, it's not my fault I can't get my work done, right?
Wednesday, November 5, 2008
Is That Mist On The Lens?
Lots of stuff to think about today. The decade long presidential campaign is at an end. What? It wasn’t a decade? Well, it seems like it’s been going on forever. But this election, as Obama keeps saying, was a defining moment in American politics. This election busted down the gates of leadership, and recreated our collective view of who can be a leader.
I’m glad about the outcome, I definitely want the Democrats back in control of the White House. I can’t say I was an “Obama supporter,” exactly, because I think that term has taken on a particular meaning infused with a bit of zealotry, but I did support Obama in this election. I am not pleased with the level of experience in political business he has, but now that we can look back at the way he ran his campaign, I do see some signs of hope for his ability to accomplish major policy goals.
The very fact that the campaign ran so long was likely a calculated move on Obama’s part. He was a fairly new politician, mostly unknown, with racial baggage and a “scary” name. He needed time to let the country become accustomed to him, and then familiar with him, and then unfazed by him. That was not something that could have happened in a short period of time.
Most politicians in his position, with the White House as a goal, would have used their Senate seat as a platform to create the needed familiarity, but for whatever reason he wanted to make his run now. He was brash enough to think he could condense the experience factor, but smart enough to know he needed something more than the traditional campaign. And he pulled it off.
So maybe the hope of universal healthcare – or at least some major reforms to the broken system we have now – has moved past hope into possibility.
And even if we don’t get health care reform, I do believe we’ve reformed the picture of a leader.
I’m glad about the outcome, I definitely want the Democrats back in control of the White House. I can’t say I was an “Obama supporter,” exactly, because I think that term has taken on a particular meaning infused with a bit of zealotry, but I did support Obama in this election. I am not pleased with the level of experience in political business he has, but now that we can look back at the way he ran his campaign, I do see some signs of hope for his ability to accomplish major policy goals.
The very fact that the campaign ran so long was likely a calculated move on Obama’s part. He was a fairly new politician, mostly unknown, with racial baggage and a “scary” name. He needed time to let the country become accustomed to him, and then familiar with him, and then unfazed by him. That was not something that could have happened in a short period of time.
Most politicians in his position, with the White House as a goal, would have used their Senate seat as a platform to create the needed familiarity, but for whatever reason he wanted to make his run now. He was brash enough to think he could condense the experience factor, but smart enough to know he needed something more than the traditional campaign. And he pulled it off.
So maybe the hope of universal healthcare – or at least some major reforms to the broken system we have now – has moved past hope into possibility.
And even if we don’t get health care reform, I do believe we’ve reformed the picture of a leader.
Sunday, November 2, 2008
Scented Shower Gel
Grandmotherly women (who come in all ages, by the way) love scented bath products. I'm not sure what the physiological connection is between a grandmotherly personality and a nose that craves scented bath products, but there is one as surely as my cat will want to be on the other side of a closed door.
Which is all a lead-in to the news that I got a gift of a scented shower gel the other day. So I dutifully took it into my shower this morning, at which point I realized I have no idea what the heck a shower gel is. Is it soap? Because it sure doesn't say that anywhere. I looked all over the label, and there was no information on it's purpose. There were directions for usage - "Lather generously over wet skin" - but nothing that actually said what the point was.
I even looked at the ingredients, hoping to get a clue, but that was even less helpful than the label. The list of ingredients, long and chemical sounding, included some things that I could tell were scent-related or color-related, but nothing that looked like a soap or other cleaning agent. Or a moisturizer, or an anti-fungal, or anything else that seemed useful.
The only ingredient that I clearly recognized was "citric acid," but unless the shower gel is intended to strip your skin from your body, which seems unlikely, I still don't know why I was generously lavishing it on my skin.
Oh well. It was pretty and has a bow on the bottle. Maybe that's the point.
Which is all a lead-in to the news that I got a gift of a scented shower gel the other day. So I dutifully took it into my shower this morning, at which point I realized I have no idea what the heck a shower gel is. Is it soap? Because it sure doesn't say that anywhere. I looked all over the label, and there was no information on it's purpose. There were directions for usage - "Lather generously over wet skin" - but nothing that actually said what the point was.
I even looked at the ingredients, hoping to get a clue, but that was even less helpful than the label. The list of ingredients, long and chemical sounding, included some things that I could tell were scent-related or color-related, but nothing that looked like a soap or other cleaning agent. Or a moisturizer, or an anti-fungal, or anything else that seemed useful.
The only ingredient that I clearly recognized was "citric acid," but unless the shower gel is intended to strip your skin from your body, which seems unlikely, I still don't know why I was generously lavishing it on my skin.
Oh well. It was pretty and has a bow on the bottle. Maybe that's the point.
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