I saw someone today I simply detest. I detest her because she has a history of spreading calumny about my son and apparently still persists in spouting her manufactured ideas to anyone she can. I despise this woman with every fiber of my being, and I don't feel this negative about anyone else. For some reason, I have a weird capacity to look right through emotion at what makes people act the way they do, and that keeps me from feeling deeply negative about them. Everyone has some inner hell that drives their detestable behaviors. Often, if you can understand that hell, you can sow a few seeds of compassion in yourself on their behalf.
And I know that this woman has a special inner hell. In fact, I know a lot about her personal demons. And if she had slandered me, I don't think I'd care. At all. Because I'm a big girl, and if I need to, I can smack all of that right on down. But she has targeted my oblivious, undefended son persistently and appears capable of almost literally collaring every adult within reach if it will help her spread her misbegotten lies about him. We owe much of our anguish over TH in the last year to her efforts to malign him.
She's just one person. Pretty much everyone knows she's batshit crazy. I ought to have some kind of pity in my heart for someone who's so soul misshapen, so destroyed inside, so empty of compassion. I actually thought I did. It's been months since she's crossed my line of sight, thank God, but she was in it today. And the sight of her makes me set my teeth, fix a 1000-yard stare, and tune out the world just so I can keep my visceral disgust tamped down. If these were different times, perhaps more lawless, less civil, maybe I'd get a few good kicks in on what presents as an ample rear target instead of having this response. Oh, for the good old days when you could throw rotten fruit at people with impunity.
This kind of persistent anger is different for me. I don't like that a person like her can have such power over my emotions. But what is more relevant is that this woman has decided to use a seven-year-old boy as her scapegoat, her Golem, her bogeyman for the elementary school years, and that seven-year-old boy is my utterly unaware, innocent son. Tomorrow, I'll go to church, where they say a lot about forgiveness. And every time I hear that word, I think of her. She's the only person I have on my very short shit list who needs my forgiveness. She's been there a long time. Is what she has done--and persists in doing--unforgivable? Apparently, for me, it is.
A blog about parenting, working, worrying, science, writing, worrying, and autism.
Saturday, April 25, 2009
Thursday, April 23, 2009
A tremor in the force
I don't think it's a big deal, really. And I didn't even think it was a big deal when she pointed it out to me. Yet, even as I didn't think that, the part of me that doesn't think but instead just reacts, viscerally, seized up briefly in a state of complete panic.
Little Da, our youngest, is now just over two and a half years old. He's a gem of a child, cute and funny and smart as a little whip. In the midst of the sassy twos, no question--or, more accurately, he responds "no" to every question--but also the first child we've ever had who spontaneously hugs us and says, "I love you." We've never gotten that before, and I didn't actually know it was something that children his age could do. It's ineffably sweet. There are many ways to say "I love you," and TH and Dubya both have been saying it to us every day of their lives, but never in English, in their own voices, spontaneously. So, that's been pleasant to hear.
Is he doing this because of his almost two years of speech and occupational therapy? Dunno. Readers of this blog will recall (perhaps) his speech and motor delays. He still has motor delays, but his speech is beautiful in terms of articulation. We close so many circles of communication now that there's an enormous Venn diagram cloud over our heads at all times. Sure, he won't talk to most people without a 30-minute warm up, and sure, if he sees another person within 10 yards of his personal space, he'll turn on his heel and walk swiftly in the other direction.
He's just shy. Really. :-)
Today, his occupational therapist and his speech therapist came out with him for our usual after-therapy chat. He's doing great. He's shy with the other kids. Still uses one word at a time with others. But boy can he bear walk now! Oh, and by the way. That tremor he had in his right hand? He's got it now also in his left hand and his left arm.
That's when my mommy viscera seized up in a panic spasm. I carefully maintained my beautifully flat affect and asked, "Do you think that's just part of the essential tremor?"
You see, Mr. DMFP doesn't like to acknowledge it, but he's got essential tremor, and so does his father. TH had a bit of a tremor as a toddler, and Little unquestionably has one in his right hand. So my rational self spoke quite calmly even as my panicky mommy self tried to unspasm inwardly.
She wasn't sure. She thought so. We might want to ask his doctor the next time we're there. No rush.
I have to say, I agree. It makes sense and fits the overall picture of his family background and his own history. But there's been a tremor in the force. Even though my rational attitude now has the upper hand, that tremor has wrought a wee crack in it, through which worry whispers urgently. Naturally, tonight, I shall Google, anxious to obtain my Google U degree in Toddler Tremors.
Little Da, our youngest, is now just over two and a half years old. He's a gem of a child, cute and funny and smart as a little whip. In the midst of the sassy twos, no question--or, more accurately, he responds "no" to every question--but also the first child we've ever had who spontaneously hugs us and says, "I love you." We've never gotten that before, and I didn't actually know it was something that children his age could do. It's ineffably sweet. There are many ways to say "I love you," and TH and Dubya both have been saying it to us every day of their lives, but never in English, in their own voices, spontaneously. So, that's been pleasant to hear.
Is he doing this because of his almost two years of speech and occupational therapy? Dunno. Readers of this blog will recall (perhaps) his speech and motor delays. He still has motor delays, but his speech is beautiful in terms of articulation. We close so many circles of communication now that there's an enormous Venn diagram cloud over our heads at all times. Sure, he won't talk to most people without a 30-minute warm up, and sure, if he sees another person within 10 yards of his personal space, he'll turn on his heel and walk swiftly in the other direction.
He's just shy. Really. :-)
Today, his occupational therapist and his speech therapist came out with him for our usual after-therapy chat. He's doing great. He's shy with the other kids. Still uses one word at a time with others. But boy can he bear walk now! Oh, and by the way. That tremor he had in his right hand? He's got it now also in his left hand and his left arm.
That's when my mommy viscera seized up in a panic spasm. I carefully maintained my beautifully flat affect and asked, "Do you think that's just part of the essential tremor?"
You see, Mr. DMFP doesn't like to acknowledge it, but he's got essential tremor, and so does his father. TH had a bit of a tremor as a toddler, and Little unquestionably has one in his right hand. So my rational self spoke quite calmly even as my panicky mommy self tried to unspasm inwardly.
She wasn't sure. She thought so. We might want to ask his doctor the next time we're there. No rush.
I have to say, I agree. It makes sense and fits the overall picture of his family background and his own history. But there's been a tremor in the force. Even though my rational attitude now has the upper hand, that tremor has wrought a wee crack in it, through which worry whispers urgently. Naturally, tonight, I shall Google, anxious to obtain my Google U degree in Toddler Tremors.
Tuesday, April 21, 2009
A tale of lost lint
We went to a great place today near town called Westcave Preserve. As its name implies, there is a cave, and it is to the west, at least if you stand in a certain place to the east of it. It was a trip for TH's second grade class, and his teacher invited me along as (a) homeroom mom and (b) a scientist who might recognize some of the flora or fauna or do something sciency along the way. I did my best to oblige, spotting a beautiful little Anolis, a nest of phoebes, and an amazing cottonmouth making his way through his relatively untouched watery abode.
This is TH's element, the outdoors. Our grizzly guide--white hair, leathered skin, gruff manner, deep knowledge, a way with managing second-graders that really had them at attention--asked the class at one point to do something he'd "bet they've never done before." That something was to stand very still and just listen to nature. I guess that might apply to some kids, but not to TH. TH has had his ear to the ground, listening to Nature's heartbeat, since he could kneel.
His bestest friend ever was on the trip (they're in the same class), and they're still at that age where they can walk together, even hold hands without feeling self conscious, without any of their classmates noticing or commenting or making fun of them. It was really very sweet. But at one point, the bestest friend ever (I'd make this into the acronym BFE, but...well, that kinda means something else around here) bumped TH's hand and knocked something out of it. The group was moving, and we didn't have a chance to look for it, and anyway TH was a tad vague about what it was. Some kind of ball was all I could get out of him.
After our return, after we had lunch at the picnic tables in the increasing warmth of this April day, TH insisted that we go back to that spot and try to find "it." "What IS it?" I asked, completely lost. He put a hand in his short's pocket and pulled out...a tiny ball of lint.
"It's a ball of lint?" I asked, obviously incredulous. "Yes," he said, and he did it with a look I'd last seen when his favorite fuzzy blanket was accidentally locked up in a Gymboree after a birthday party. I knew that look. I'd already recognized what was becoming a fine but increasingly rare example of his capacity for perseveration. We went back to the path to search for the ball of lint.
We did not find it.
TH became teary. He turned to me and clung to me and actually started to cry. He really really liked that ball of lint.
It's been awhile since I've seen that level of perseveration, and it's been a REALLY long while since I've seen that level of attachment to an inanimate object. His past includes strong attachments for things like eggs, acorns, and...more acorns...but he'd never indicated a yearning for a good ball of pocket lint. I think that for him, it was sort of like a comforting "fidget," something he did with his hands to alleviate anxiety. He does this still--as do all three of our children--with the edge of his fuzzy blanket, blindly feeling for that "perfect spot" to rub between his thumb and forefinger.
Our oldest son rarely cries. A girl in his class clocked him on the head with a large rock last week, and he related the story and said, almost with surprise, that it made him get a "little tear in his eye." This lost ball of lint drew out several very real tears. Obviously, the lint far outweighed the rock in importance and in its capacity to cause pain.
We never found the lint. I offered up some other lint from other pockets. We'll see if a suitable substitute ball of lint exists. In the meantime, we went after school to take advantage of today's Ben and Jerry's free scoop of ice cream offer. It wasn't a ball of lint, but the capacity of chocolate to soothe and heal is, I firmly believe, almost infinite.
**I am truly amazed that as I went to add labels for this post, I already had made labels for ice cream, acorns, and snakes. Obviously, our lives have their specific leitmotifs.
This is TH's element, the outdoors. Our grizzly guide--white hair, leathered skin, gruff manner, deep knowledge, a way with managing second-graders that really had them at attention--asked the class at one point to do something he'd "bet they've never done before." That something was to stand very still and just listen to nature. I guess that might apply to some kids, but not to TH. TH has had his ear to the ground, listening to Nature's heartbeat, since he could kneel.
His bestest friend ever was on the trip (they're in the same class), and they're still at that age where they can walk together, even hold hands without feeling self conscious, without any of their classmates noticing or commenting or making fun of them. It was really very sweet. But at one point, the bestest friend ever (I'd make this into the acronym BFE, but...well, that kinda means something else around here) bumped TH's hand and knocked something out of it. The group was moving, and we didn't have a chance to look for it, and anyway TH was a tad vague about what it was. Some kind of ball was all I could get out of him.
After our return, after we had lunch at the picnic tables in the increasing warmth of this April day, TH insisted that we go back to that spot and try to find "it." "What IS it?" I asked, completely lost. He put a hand in his short's pocket and pulled out...a tiny ball of lint.
"It's a ball of lint?" I asked, obviously incredulous. "Yes," he said, and he did it with a look I'd last seen when his favorite fuzzy blanket was accidentally locked up in a Gymboree after a birthday party. I knew that look. I'd already recognized what was becoming a fine but increasingly rare example of his capacity for perseveration. We went back to the path to search for the ball of lint.
We did not find it.
TH became teary. He turned to me and clung to me and actually started to cry. He really really liked that ball of lint.
It's been awhile since I've seen that level of perseveration, and it's been a REALLY long while since I've seen that level of attachment to an inanimate object. His past includes strong attachments for things like eggs, acorns, and...more acorns...but he'd never indicated a yearning for a good ball of pocket lint. I think that for him, it was sort of like a comforting "fidget," something he did with his hands to alleviate anxiety. He does this still--as do all three of our children--with the edge of his fuzzy blanket, blindly feeling for that "perfect spot" to rub between his thumb and forefinger.
Our oldest son rarely cries. A girl in his class clocked him on the head with a large rock last week, and he related the story and said, almost with surprise, that it made him get a "little tear in his eye." This lost ball of lint drew out several very real tears. Obviously, the lint far outweighed the rock in importance and in its capacity to cause pain.
We never found the lint. I offered up some other lint from other pockets. We'll see if a suitable substitute ball of lint exists. In the meantime, we went after school to take advantage of today's Ben and Jerry's free scoop of ice cream offer. It wasn't a ball of lint, but the capacity of chocolate to soothe and heal is, I firmly believe, almost infinite.
**I am truly amazed that as I went to add labels for this post, I already had made labels for ice cream, acorns, and snakes. Obviously, our lives have their specific leitmotifs.
Monday, April 20, 2009
Read, and recollect
Go to the comments part of this post. Scroll down to the last comment posted. There, you'll find a couple of letters. The first in order is a response from the person who perpetrated that travesty of an article (allegedly) about autism that describes autistic children as feces-exploding, seizing, toxic nightmares unable to rid themselves of poison or disease.
A reader of my blog and local mom of six kids, five who are autistic, contacted the author of this article. She has now posted the author's response and her own reply to that response. Read them for yourself. Read that original article, a clear shill for Thoughtful House. Remember that these are our children being described in this way, talked about in this way. Recollect that it's already an uphill battle to help people better understand what autistic really means. Most of all, fight this egregious misrepresentation of this neurological difference with whatever means you have in your arsenal: Loving your child, helping your child, treating your child like any other human being deserves to be treated, and insisting that others--teachers, parents, friends, and alleged writers--do the same. People who insist on misrepresenting autism are bullies, especially those who have a pulpit from which to preach and who misuse that pulpit.
I've described this blog as being about many things, and one of those includes writing. The writer of that article refers in her response letter to "reporting," as though what was produced here was in some way journalistic and adhered to the ethics of reporting. Yet her own letter clearly reflects again the inherent bias of that piece. That piece is so full of misinformation and so lacking in balance that it could and should be used in an introductory journalism class for how not to write feature articles. It shows many other things, as well, but I'll leave that for you to discover.
There's a reason people who earn journalism degrees have to take ethics classes. The power of the printed word is one of the greatest powers anyone can wield. The onus of maintaining clear ethics, of ensuring balance, of providing accurate, factual information, is one of the weightiest burdens a writer for a popular audience bears. It is not something to be handled lightly. Or falsely.
A reader of my blog and local mom of six kids, five who are autistic, contacted the author of this article. She has now posted the author's response and her own reply to that response. Read them for yourself. Read that original article, a clear shill for Thoughtful House. Remember that these are our children being described in this way, talked about in this way. Recollect that it's already an uphill battle to help people better understand what autistic really means. Most of all, fight this egregious misrepresentation of this neurological difference with whatever means you have in your arsenal: Loving your child, helping your child, treating your child like any other human being deserves to be treated, and insisting that others--teachers, parents, friends, and alleged writers--do the same. People who insist on misrepresenting autism are bullies, especially those who have a pulpit from which to preach and who misuse that pulpit.
I've described this blog as being about many things, and one of those includes writing. The writer of that article refers in her response letter to "reporting," as though what was produced here was in some way journalistic and adhered to the ethics of reporting. Yet her own letter clearly reflects again the inherent bias of that piece. That piece is so full of misinformation and so lacking in balance that it could and should be used in an introductory journalism class for how not to write feature articles. It shows many other things, as well, but I'll leave that for you to discover.
There's a reason people who earn journalism degrees have to take ethics classes. The power of the printed word is one of the greatest powers anyone can wield. The onus of maintaining clear ethics, of ensuring balance, of providing accurate, factual information, is one of the weightiest burdens a writer for a popular audience bears. It is not something to be handled lightly. Or falsely.
Sunday, April 19, 2009
Le Miserable
Dubya has been having quite a several weeks here lately. His antics, never under control, have pushed beyond bounds, especially in this last week. At school, he gets "tally marks" once he accumulates three "warnings" for behavior outside the rules. Usually, his warnings are for the usual: talking, violating body space, wiggling. Sometimes, he gets one for "dilly-dallying." I'm not quite sure how that manifests or where, but it sounds dire, doesn't it? Thou shalt NOT dilly dally, y'all.
Anyway, this week, he came home on Wednesday and told me his usual garbled interpretation of his days' defalcations, which included several warnings and a tally mark that was apparently going to hold over into the next two days. Naturally, I was somewhat alarmed to learn of this everlasting tally mark and queried him more closely about the behavior that generated it. Oh, he said, (note how I avoid using quotation marks, just like William Saroyan!)...anyway...Oh, he said, I just did something with my elbow and knocked over a lot of colored water, and so I got three days of tally marks in a row.
At that point, I found myself distracted by the exigencies of Everyday Math (which appears to be predicated on the idea that parents must do math homework Every Day, primarily by digging up household objects that have been buried in boxes through three moves and then measuring them with everyone's feet). And I sort of forgot all about Dubya's little story until...
His teacher emailed me that night. She's as sweet and kind and understanding as any human being can be. If I tell you that she's served for more than 25 years as a kindergarten teacher and is also very smart and witty and funny, well...obviously, she's some kind of candidate for sainthood. The first line of the email made my very short hair stand right up on end: Dubya urinated on the bathroom floor today.
Yep. My six-year-old peed on the bathroom floor at school. Apparently, some other little kid saw him and ratted him out to his teacher. So in Dubya's world, penis = elbow, and urine = colored water. I see.
OK. I know that boys have penises and it's probably completely irresistible to aim them at stuff and let fire. I know that. I don't get it because it would never occur to me and never has occurred to me to drop trou and cut loose on the floor. Nevertheless, had that been the sum total of his transgressions for the day, I'd've left it at the three school tally marks and the dressing down from the janitorial headmistress that Dubya got at school. But that little bugger came home and told me a bold-faced lie about knocking over colored water, for God's sake. I should've known he was lying because for once in his life, he was actually looking me right in the eye.
So, he's had to write "I will not lie" 100 times, in batches of 25. I have to admit a little spark of pride fired up when I saw that he'd figured out some of the age-old ways of getting this done faster, including making all of the L's in each word a straight line all the way down the page and speed writing one word 25 times before moving onto the next one.
Little Dubya's entire week has been like this, and the weekend was no exception. One thing after another. Almost knocked over the gumball machine in a restaurant, just being rowdy. Falling into the elderly, just being rowdy. Running into the path of oncoming cyclists, just being rowdy. Loud, rowdy, impulsive, and downright dumb behavior from morning to night. And the emotional rollercoaster ride rumbles right along there with it.
Today, we were at the zoo. For about the millionth time, I'd had to pull him to the side and bring him back down to Earth from the Planet Zany, where all things are possible. And I said to him, "You know, if you keep having trouble like this, we may have to get you some medicine that I'm worried might make you feel kind of like a zombie." And you know what he said?
"Good. Maybe that way, I won't feel so miserable all the time."
Oh. Sh**.
Anyway, this week, he came home on Wednesday and told me his usual garbled interpretation of his days' defalcations, which included several warnings and a tally mark that was apparently going to hold over into the next two days. Naturally, I was somewhat alarmed to learn of this everlasting tally mark and queried him more closely about the behavior that generated it. Oh, he said, (note how I avoid using quotation marks, just like William Saroyan!)...anyway...Oh, he said, I just did something with my elbow and knocked over a lot of colored water, and so I got three days of tally marks in a row.
At that point, I found myself distracted by the exigencies of Everyday Math (which appears to be predicated on the idea that parents must do math homework Every Day, primarily by digging up household objects that have been buried in boxes through three moves and then measuring them with everyone's feet). And I sort of forgot all about Dubya's little story until...
His teacher emailed me that night. She's as sweet and kind and understanding as any human being can be. If I tell you that she's served for more than 25 years as a kindergarten teacher and is also very smart and witty and funny, well...obviously, she's some kind of candidate for sainthood. The first line of the email made my very short hair stand right up on end: Dubya urinated on the bathroom floor today.
Yep. My six-year-old peed on the bathroom floor at school. Apparently, some other little kid saw him and ratted him out to his teacher. So in Dubya's world, penis = elbow, and urine = colored water. I see.
OK. I know that boys have penises and it's probably completely irresistible to aim them at stuff and let fire. I know that. I don't get it because it would never occur to me and never has occurred to me to drop trou and cut loose on the floor. Nevertheless, had that been the sum total of his transgressions for the day, I'd've left it at the three school tally marks and the dressing down from the janitorial headmistress that Dubya got at school. But that little bugger came home and told me a bold-faced lie about knocking over colored water, for God's sake. I should've known he was lying because for once in his life, he was actually looking me right in the eye.
So, he's had to write "I will not lie" 100 times, in batches of 25. I have to admit a little spark of pride fired up when I saw that he'd figured out some of the age-old ways of getting this done faster, including making all of the L's in each word a straight line all the way down the page and speed writing one word 25 times before moving onto the next one.
Little Dubya's entire week has been like this, and the weekend was no exception. One thing after another. Almost knocked over the gumball machine in a restaurant, just being rowdy. Falling into the elderly, just being rowdy. Running into the path of oncoming cyclists, just being rowdy. Loud, rowdy, impulsive, and downright dumb behavior from morning to night. And the emotional rollercoaster ride rumbles right along there with it.
Today, we were at the zoo. For about the millionth time, I'd had to pull him to the side and bring him back down to Earth from the Planet Zany, where all things are possible. And I said to him, "You know, if you keep having trouble like this, we may have to get you some medicine that I'm worried might make you feel kind of like a zombie." And you know what he said?
"Good. Maybe that way, I won't feel so miserable all the time."
Oh. Sh**.
Thursday, April 16, 2009
A family of letters
Today, as we drove along--yep, we were in our van (Dubya has decided he wants to have school in the van)--I called the driver in front of me a "bucket head" because, well, she was being a bucket head. TH, ever the inquisitive, piped from the back seat, "Mama, what does 'bucket head' mean?" I knew that in the various literal minds of my interlocutors, there were undoubtedly visions of heads with buckets on them, and I had no better explanation. (Although I've learned from Google U that it may be a sort of nickname for firefighters on the east coast. Why just those firefighters, I don't know).
Having not yet gotten my Google U degree in Bucket Head when we were having this conversation, I had to punt. "I think it's just kind of a satisfying thing to say when you're mad at someone," I finally came up with. "You know, I can't call them really bad names, but I feel like I need to call them something, so I say, 'bucket head.' It makes me feel better." It's true. I'd really like to say something worse that rhymes in part with "buck...," but, well, my kids are in the car and I sort of am trying to clean up my language. And please, no lectures on name calling. I'd rather get the steam out gently anathematizing a complete stranger who can't hear me for driving like an idiot than let it out later at my children or Mr. DMFP over unfinished dinners, crumbs on the floor, tumbled over folded laundry, or left-up toilet seats. Yes, that's the life of a glamorous, ivory-tower-dwelling, soon-to-be-former academic.
Anyway, I thought a bit more about "bucket head" and elaborated. "You know," I observed, "just about every word that makes you feel better when you're made has a 'b' or 't' or 'k' or 'd' sound in it. There must be something to that."
Think about it. It's true. All those seven words you can't say on TV? Like b******, b*****, f***, s***, the "c word" (can't bring myself to type that even with the asterisks), and even the ones you can, like "sucks," all have those satisfying sounds.
Dubya was on board immediately. "Like BARNACLES!!" he hollered, savoring his favorite "bad" word, courtesy of SpongeBob SquarePants. TH was on board, too. "Like SHOOT!" he squeaked, a favorite of his. "Or DANG!"
And there's my personal favorite, my best substitute for the s-word: "Monkeys." As in "Holy monkeys, that hurt like a mother!" or "Monkeys! You just ruined my manuscript! Monkeys, monkeys, MONKEYS!!!"
I bet if you pause and think on it a bit, you too will see the enormous benefits of those fabulous hard consonants. Those delicious and deliciously cathartic B, T, D, and the K sounds. Don't leave home--or drive behind idiot bucket heads--without them.
Having not yet gotten my Google U degree in Bucket Head when we were having this conversation, I had to punt. "I think it's just kind of a satisfying thing to say when you're mad at someone," I finally came up with. "You know, I can't call them really bad names, but I feel like I need to call them something, so I say, 'bucket head.' It makes me feel better." It's true. I'd really like to say something worse that rhymes in part with "buck...," but, well, my kids are in the car and I sort of am trying to clean up my language. And please, no lectures on name calling. I'd rather get the steam out gently anathematizing a complete stranger who can't hear me for driving like an idiot than let it out later at my children or Mr. DMFP over unfinished dinners, crumbs on the floor, tumbled over folded laundry, or left-up toilet seats. Yes, that's the life of a glamorous, ivory-tower-dwelling, soon-to-be-former academic.
Anyway, I thought a bit more about "bucket head" and elaborated. "You know," I observed, "just about every word that makes you feel better when you're made has a 'b' or 't' or 'k' or 'd' sound in it. There must be something to that."
Think about it. It's true. All those seven words you can't say on TV? Like b******, b*****, f***, s***, the "c word" (can't bring myself to type that even with the asterisks), and even the ones you can, like "sucks," all have those satisfying sounds.
Dubya was on board immediately. "Like BARNACLES!!" he hollered, savoring his favorite "bad" word, courtesy of SpongeBob SquarePants. TH was on board, too. "Like SHOOT!" he squeaked, a favorite of his. "Or DANG!"
And there's my personal favorite, my best substitute for the s-word: "Monkeys." As in "Holy monkeys, that hurt like a mother!" or "Monkeys! You just ruined my manuscript! Monkeys, monkeys, MONKEYS!!!"
I bet if you pause and think on it a bit, you too will see the enormous benefits of those fabulous hard consonants. Those delicious and deliciously cathartic B, T, D, and the K sounds. Don't leave home--or drive behind idiot bucket heads--without them.
Tuesday, April 14, 2009
A three-legged stroll
A year ago, I sent myself an email. In it, I had typed four capital letters, a prediction I was making based on what I knew about my own body, what I knew about physiology, what I knew about dermatomes and myotomes.
A month ago, I went to one of the top neurologists in the country, referred by my Home Neuro, to get a decision about what ails me. The choices weren't that great: one was primary lateral sclerosis (PLS), which is related to amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. PLS is not the death sentence that ALS usually is, but it's completely debilitating, rare, and can lead to drooling. I don't know why, but of those things, the drooling was what really got to me.
The other option was some kind of demyelinating disease (a.k.a., multiple sclerosis, MS). Being who I am with my background in science and medicine, blah blah blah, my money was on this horse. I actually had a pretty entertaining time during the three-day appointment, which involved the neurologist and his posse of residents, medical students, and research coordinator. It was just like doing my very fun and inspiring post-doc all over again, except this time, I was the mouse.
While Famous Neuro has yet to write his letter to my Home Neuro, the consensus when I left was demyelinating disease of the cervical spine (i.e., I've got scarred neuronal connections in the spinal cord in my neck). There are three differential diagnoses to explain this condition. Given that one is associated only with adolescent boys and the second would have likely incapacitated or killed me a year ago, I'm left with the third, which is MS. If it is that, it's the progressive form of MS (called PPMS), which, as the med books say, has an "insidious onset" that progressively worsens over the years.
Call it what you want. I just work with the day-to-day manifestations of it. Can't stand for more than five minutes before my lower legs plead mercy. I can walk, but on my less-than-2-mile walk, I eventually end up staggering along like one of the undead from a bad zombie movie (is there any other kind?). I've got a strange kind of fatigue that's not like what you get without enough sleep. It's as though something has tapped into my energy stores and drained them completely. The right side of my body is pathologically weak, and I have "pathological spread of reflexes." That means that if you hit my left knee with a reflex hammer, I'll kick you with both of my feet. If I teach, my legs hurt and walking is a struggle. If I type, my hands hurt and go numb at night. I've got the results of three EMGs to demonstrate that this numbness is not, as I had thought, carpal tunnel. Nope. It's the cervical spine.
I finally asked my mother for a cane. She has a closet full of them, having kept them there since the passing of my great-grandmother. My great-grandmother used them in her 80s and 90s. And now I'm using one. I took it on my walk yesterday. At first, I wasn't sure what to do. I wasn't even sure which side needed the most support and assistance. But I finally got the hang of it, and once I did, the damned thing did actually help. It helped me keep my body in better alignment, which cut down on after-walk pain. And it kept me from lurching down the road toward my house at the end of my walk, looking like an out-of-control zombie on some very bad street drugs.
There are new chapters unfolding before me here. We're still waiting on Famous Neuro's letter, the summary of the diagnosis. What I have right now is what he told me and Mr. DMFP in our final, eight-person gathering in the hospital room, right before I checked out. Cervical myelopathy, demyelinating. And on the much brighter side, it is not PLS. Thank God. Specifying the nature of the myelopathy doesn't really matter to me now because I've reached a point of needing--wanting? needing? must having?--a third support when I use my legs. I don't care what you call it. It requires a cane.
That email I sent myself a year ago, when I had not quite reached the age of 40? It said, PPMS. I don't know why I sent it except to demonstrate a certain surety of knowledge about myself that I felt the doctors must eventually come around to, also.
On Friday, I turn 41. And on some days, I require a cane. That's something to which I, myself, have had to come around.
A month ago, I went to one of the top neurologists in the country, referred by my Home Neuro, to get a decision about what ails me. The choices weren't that great: one was primary lateral sclerosis (PLS), which is related to amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. PLS is not the death sentence that ALS usually is, but it's completely debilitating, rare, and can lead to drooling. I don't know why, but of those things, the drooling was what really got to me.
The other option was some kind of demyelinating disease (a.k.a., multiple sclerosis, MS). Being who I am with my background in science and medicine, blah blah blah, my money was on this horse. I actually had a pretty entertaining time during the three-day appointment, which involved the neurologist and his posse of residents, medical students, and research coordinator. It was just like doing my very fun and inspiring post-doc all over again, except this time, I was the mouse.
While Famous Neuro has yet to write his letter to my Home Neuro, the consensus when I left was demyelinating disease of the cervical spine (i.e., I've got scarred neuronal connections in the spinal cord in my neck). There are three differential diagnoses to explain this condition. Given that one is associated only with adolescent boys and the second would have likely incapacitated or killed me a year ago, I'm left with the third, which is MS. If it is that, it's the progressive form of MS (called PPMS), which, as the med books say, has an "insidious onset" that progressively worsens over the years.
Call it what you want. I just work with the day-to-day manifestations of it. Can't stand for more than five minutes before my lower legs plead mercy. I can walk, but on my less-than-2-mile walk, I eventually end up staggering along like one of the undead from a bad zombie movie (is there any other kind?). I've got a strange kind of fatigue that's not like what you get without enough sleep. It's as though something has tapped into my energy stores and drained them completely. The right side of my body is pathologically weak, and I have "pathological spread of reflexes." That means that if you hit my left knee with a reflex hammer, I'll kick you with both of my feet. If I teach, my legs hurt and walking is a struggle. If I type, my hands hurt and go numb at night. I've got the results of three EMGs to demonstrate that this numbness is not, as I had thought, carpal tunnel. Nope. It's the cervical spine.
I finally asked my mother for a cane. She has a closet full of them, having kept them there since the passing of my great-grandmother. My great-grandmother used them in her 80s and 90s. And now I'm using one. I took it on my walk yesterday. At first, I wasn't sure what to do. I wasn't even sure which side needed the most support and assistance. But I finally got the hang of it, and once I did, the damned thing did actually help. It helped me keep my body in better alignment, which cut down on after-walk pain. And it kept me from lurching down the road toward my house at the end of my walk, looking like an out-of-control zombie on some very bad street drugs.
There are new chapters unfolding before me here. We're still waiting on Famous Neuro's letter, the summary of the diagnosis. What I have right now is what he told me and Mr. DMFP in our final, eight-person gathering in the hospital room, right before I checked out. Cervical myelopathy, demyelinating. And on the much brighter side, it is not PLS. Thank God. Specifying the nature of the myelopathy doesn't really matter to me now because I've reached a point of needing--wanting? needing? must having?--a third support when I use my legs. I don't care what you call it. It requires a cane.
That email I sent myself a year ago, when I had not quite reached the age of 40? It said, PPMS. I don't know why I sent it except to demonstrate a certain surety of knowledge about myself that I felt the doctors must eventually come around to, also.
On Friday, I turn 41. And on some days, I require a cane. That's something to which I, myself, have had to come around.
Sunday, April 12, 2009
In which a career change--or is it end?--occurs
I've officially decided to leave academia. It's not because of autism or anything like that, although there are factors of autism involved. At the university where I currently teach, I've requested schedules that fit into the needs of our family life. As I've blogged here, TH cannot--or at least, we will not let him--ride the bus. It's too much unstructured time. To hear other children tell it, he's a giant in a fairy tale, bent on malevolence, blackening and bruising. The reality is, of course, different.
As it happens, I'm available to teach between a specific set of hours spanning six hours of each day. Otherwise, I work at home, planning and grading and writing class notes, reviews, and tests, corresponding with my students until midnight each night. I can't get to campus earlier because I take my three young children to school. I can't leave later because that would mean doing again what we did this semester: having my near-octogenarian father-in-law pick up our two older sons two days each week and drive them home. That's a semester-long commitment and a major imposition, among other things. We will not put them in after-school care because it's an unstructured free-for-all in the charge of young people who don't look old enough to drive. It's like the bus except bigger and less protected.
This semester, I was as clear as I could be about those six daily hours that would be best. And once again, I received a class that ran beyond the school pickup time. I can't ask my in-laws to once again commit to an entire semester of after-school pickups, and not just because I'm reluctant to ask people for that kind of commitment. There are other, very good reasons. And my husband's job does not allow the necessary flexibility, and it would be a 15-mile round trip for him as it is.
The frustrating thing for me is seeing that other people--adjuncts, older faculty with either no children at all or grown children--get time slots, sometimes just an hour earlier, that would make this all fit. There is, of course, a sense of place about these things. When you're long-time tenured faculty, you get the class times you want. I can't fight that tide. I've done what I could as courteously and straightforwardly as I could, and it just hasn't worked.
I'm a great teacher. That's immodest, I know, but it's simply one of the things I do best. It's not just that my students and faculty reviewers consistently give me extremely high rankings. It's what they say, both in the Likert scale responses and in their own comments. Students say, "Makes me think." "Opens my mind to new ideas." "Difficult, but worth it." "Tough, but fair." In other words, they don't like my class because it's a cakewalk. They like it because it's interesting to them, and they learn. Both students and faculty reviewers say quite often--to the point that I'm afraid someone's going to think I'm suggesting it--"Give Dr. DMFP a raise!" And much of this from students who come into the physics/chemistry/biology course I teach as nonmajors who think they loathe science and can't "do it." They find that they can.
Unfortunately, as it stands right now, I cannot. It's not just about the hours--I guess we could hire a nanny to pick them up, but I also don't like the idea of someone else driving them around blah blah blah. It's about many things, including what is likely simply not a fit for me and the institution, and lately, some health developments.
So, I say goodbye to teaching and to academia. I don't see an avenue to returning. Luckily, I'm a woman of many pursuits, among them long-time work telecommuting as a scientific editor and writer. I'll continue that. I have a book contract for a biology book I'm writing. I'm working on other book contracts. My goal is to work from home in a way that I can fold my work hours around my mommying hours, spend my time with my children as they and I please and as we need. In a way, I'm looking forward to finally not having to worry with each semester whether or not I'll have a schedule that fits our family's needs. On the other hand, two nights ago, I had a dream that I was forced by fiscal exigencies to take a job at Stein Mart.
And I truly also see it this way. Yes, I'm walking away from a 4/4 load teaching the same class again and again, teaching 100 students or so a semester, changing the world one neuron at a time. But I'm turning more fully to teaching my 24-7 load, teaching many different things in many different ways to three students who live with me, changing or reinforcing or promoting their growth one neuron at a time, many many nuerons at a time.
I can think of no better teaching challenge than that.
As it happens, I'm available to teach between a specific set of hours spanning six hours of each day. Otherwise, I work at home, planning and grading and writing class notes, reviews, and tests, corresponding with my students until midnight each night. I can't get to campus earlier because I take my three young children to school. I can't leave later because that would mean doing again what we did this semester: having my near-octogenarian father-in-law pick up our two older sons two days each week and drive them home. That's a semester-long commitment and a major imposition, among other things. We will not put them in after-school care because it's an unstructured free-for-all in the charge of young people who don't look old enough to drive. It's like the bus except bigger and less protected.
This semester, I was as clear as I could be about those six daily hours that would be best. And once again, I received a class that ran beyond the school pickup time. I can't ask my in-laws to once again commit to an entire semester of after-school pickups, and not just because I'm reluctant to ask people for that kind of commitment. There are other, very good reasons. And my husband's job does not allow the necessary flexibility, and it would be a 15-mile round trip for him as it is.
The frustrating thing for me is seeing that other people--adjuncts, older faculty with either no children at all or grown children--get time slots, sometimes just an hour earlier, that would make this all fit. There is, of course, a sense of place about these things. When you're long-time tenured faculty, you get the class times you want. I can't fight that tide. I've done what I could as courteously and straightforwardly as I could, and it just hasn't worked.
I'm a great teacher. That's immodest, I know, but it's simply one of the things I do best. It's not just that my students and faculty reviewers consistently give me extremely high rankings. It's what they say, both in the Likert scale responses and in their own comments. Students say, "Makes me think." "Opens my mind to new ideas." "Difficult, but worth it." "Tough, but fair." In other words, they don't like my class because it's a cakewalk. They like it because it's interesting to them, and they learn. Both students and faculty reviewers say quite often--to the point that I'm afraid someone's going to think I'm suggesting it--"Give Dr. DMFP a raise!" And much of this from students who come into the physics/chemistry/biology course I teach as nonmajors who think they loathe science and can't "do it." They find that they can.
Unfortunately, as it stands right now, I cannot. It's not just about the hours--I guess we could hire a nanny to pick them up, but I also don't like the idea of someone else driving them around blah blah blah. It's about many things, including what is likely simply not a fit for me and the institution, and lately, some health developments.
So, I say goodbye to teaching and to academia. I don't see an avenue to returning. Luckily, I'm a woman of many pursuits, among them long-time work telecommuting as a scientific editor and writer. I'll continue that. I have a book contract for a biology book I'm writing. I'm working on other book contracts. My goal is to work from home in a way that I can fold my work hours around my mommying hours, spend my time with my children as they and I please and as we need. In a way, I'm looking forward to finally not having to worry with each semester whether or not I'll have a schedule that fits our family's needs. On the other hand, two nights ago, I had a dream that I was forced by fiscal exigencies to take a job at Stein Mart.
And I truly also see it this way. Yes, I'm walking away from a 4/4 load teaching the same class again and again, teaching 100 students or so a semester, changing the world one neuron at a time. But I'm turning more fully to teaching my 24-7 load, teaching many different things in many different ways to three students who live with me, changing or reinforcing or promoting their growth one neuron at a time, many many nuerons at a time.
I can think of no better teaching challenge than that.
Friday, April 10, 2009
What is autism? Well, it ain't this.
While waiting for the ignominy that we call "mammogram" yesterday, I picked up one of the free mags in the waiting room. It's name is Austin Woman Magazine. Being a woman and in Austin, I felt I must be a member of its target audience. After paging through about 50 ads for plastic surgery and anti-aging treatments, I figured that my age and gender were its target audience, but that I myself was not.
Then, I came across this story, entitled "What is Autism?" I quote here for your delectation the lede:
"What is autism? Autism is a complex medical illness that affects a person's behavior as well as many of the body's systems, most notably the neurological, gastrointestinal and the immune systems. Children with autism have impaired ability to detoxify themselves. When exposed to environmental chemicals, instead of the body getting rid of them through its natural defenses, the substances build up and cause massive disruption of the metabolism and bodily functions. Children with autism often have seizures, copious foul diarrhea and are prone to recurrent infections because of their impaired ability to detoxify."
Oh. My. God. Let's overlook the crappy prose, the lack of parallelism, the AP style. No. Don't look at that. Look at that description of autism. For God's sake. What? WTF? Impaired ability to detoxify? Can I see the damned peer-reviewed, unretracted citations on that one? Environmental chemicals? What other kinds of chemicals are there? Non-environmental? Heavenly? Other-worldly?
There's so much here to stomp into the mud that I won't even bother. As my brain tried desperately to recover even as I read on (masochism, anyone?), I noted the photo credit. Dr. Bryan Jepson, Thoughtful House Center for Children. I turned the page. There was a "sidebar" that included a plug for and picture of the cover of Jepson's book, Changing the Course of Autism: A Scientific Approach for Parents and Physicians. And the "expert" quoted throughout the article? Why, the good Dr. Jepson himself. Oh. This is not an article. It's dressed like one. It's bylined like one. But it's really one big long advertisement for Jepson and Thoughtful House. Hope they paid good money for it.
Good Lord. It quotes the good doctor as saying, "Many people say that autism is genetic. But studies show that is not the case. Autism has been studied extensively in genetics, yet only 3% of those affected have a genetic component." WHAT? And then, in the very next quote, he says, "Autism appears to have a genetic predisposition that is triggered by the environment." Dr. Jepson, do you always argue with yourself like that? How do you feel about arguing with actual scientists who are working in the genetics of autism, like, say, these folks at MIT? What have you got to say about the findings of twin studies that directly contradict these unsupported statements? These, by the way, are rhetorical questions. I'm not interested in such a conversation.
I understand that this "magazine" relies completely on advertising dollars, given that it is a free, four-color glossy pub. But that's no excuse for parading nonsense and misinformation in the guise of a bylined, allegedly "journalistic" article that begins with a string of false, unsupportable assertions and relies solely on one "expert" who's got a big, fat, moneyed dog in this hunt. This piece is a huge disservice to so many stakeholders in autism. I encourage anyone who reads this to contact the editors of this magazine at editor@austinwomanmagazine.com and let them know what a gross misrepresentation of autism this is. One question you might ask is, Why aren't the full-page ads for liposuction and breast enhancement enough?
Then, I came across this story, entitled "What is Autism?" I quote here for your delectation the lede:
"What is autism? Autism is a complex medical illness that affects a person's behavior as well as many of the body's systems, most notably the neurological, gastrointestinal and the immune systems. Children with autism have impaired ability to detoxify themselves. When exposed to environmental chemicals, instead of the body getting rid of them through its natural defenses, the substances build up and cause massive disruption of the metabolism and bodily functions. Children with autism often have seizures, copious foul diarrhea and are prone to recurrent infections because of their impaired ability to detoxify."
Oh. My. God. Let's overlook the crappy prose, the lack of parallelism, the AP style. No. Don't look at that. Look at that description of autism. For God's sake. What? WTF? Impaired ability to detoxify? Can I see the damned peer-reviewed, unretracted citations on that one? Environmental chemicals? What other kinds of chemicals are there? Non-environmental? Heavenly? Other-worldly?
There's so much here to stomp into the mud that I won't even bother. As my brain tried desperately to recover even as I read on (masochism, anyone?), I noted the photo credit. Dr. Bryan Jepson, Thoughtful House Center for Children. I turned the page. There was a "sidebar" that included a plug for and picture of the cover of Jepson's book, Changing the Course of Autism: A Scientific Approach for Parents and Physicians. And the "expert" quoted throughout the article? Why, the good Dr. Jepson himself. Oh. This is not an article. It's dressed like one. It's bylined like one. But it's really one big long advertisement for Jepson and Thoughtful House. Hope they paid good money for it.
Good Lord. It quotes the good doctor as saying, "Many people say that autism is genetic. But studies show that is not the case. Autism has been studied extensively in genetics, yet only 3% of those affected have a genetic component." WHAT? And then, in the very next quote, he says, "Autism appears to have a genetic predisposition that is triggered by the environment." Dr. Jepson, do you always argue with yourself like that? How do you feel about arguing with actual scientists who are working in the genetics of autism, like, say, these folks at MIT? What have you got to say about the findings of twin studies that directly contradict these unsupported statements? These, by the way, are rhetorical questions. I'm not interested in such a conversation.
I understand that this "magazine" relies completely on advertising dollars, given that it is a free, four-color glossy pub. But that's no excuse for parading nonsense and misinformation in the guise of a bylined, allegedly "journalistic" article that begins with a string of false, unsupportable assertions and relies solely on one "expert" who's got a big, fat, moneyed dog in this hunt. This piece is a huge disservice to so many stakeholders in autism. I encourage anyone who reads this to contact the editors of this magazine at editor@austinwomanmagazine.com and let them know what a gross misrepresentation of autism this is. One question you might ask is, Why aren't the full-page ads for liposuction and breast enhancement enough?
Wednesday, April 8, 2009
Let's talk about it
TH knows that he has Asperger's. We talk about it openly, he was privy to the whole Circle of Friends process, including what I showed in the slides and talked about in class, and he himself often brings up Asperger's. He knows I write this blog, and I don't write about things here that we're not comfortable talking about. His observations lately have been sometimes a little poignant but often just downright funny. They're even funnier if you know TH and can imagine the loud, always-shocked voice, the crinkly faces, the sunny smiles that go with them.
A few weeks ago, he informed me that his life was a misery because he has Asperger's. I tried to get him to articulate more, but what it really came down to was his favorite pet peeve about Asperger's: he hears the word "ass" in it, and that disturbs him deeply.
His brother, Dubya, will sometimes point out to TH that TH's annoying behavior of the moment is because of "the way his brain is made." Even as he makes this point and recognizes it, Dubya still requires that TH cease and desist from the behavior. Sometimes, the behavior is just simple vocalizing, loudly, while, as Dubya says, "not making any sense, General Nonsense!" Other times, it's physical, and if we don't intervene soon enough, Dubya will be the one off in a tailspin.
In public, TH really lets it all hang out sometimes, vocalizing, making this incredible series of distorted faces, flapping. Some people may disagree with this approach, but we are really trying to get TH to distinguish between appropriate and inappropriate situations for these behaviors, especially the loud vocalizing. To wit: sitting in a fairly quiet restaurant? Not the best time to make loud, startling "Wheeeeeeeeeee! Eeeeeeeee! Bawwwwk!" noises. We wouldn't address this with him if we didn't know that he really can shut those off, at least for a short time, and "save" them for later.
So, we've talked to him about those behaviors. We've asked him why he does them. He thinks it's his Asperger's, and we've told him that we think that's right. And we've talked to him about autistic behaviors as a shorthand way of letting him know that a specific behavior might be one he wants to try to save for a more private time. He's curious to identify these because he's more interested than we are in not sticking out as "weird." (Honestly, I don't care if he's weird for the sake of himself, but we have the rest of the world to contend with, too, not just for what they think, but to respect their right to a comfortable space, as well).
And we were driving in the car the other day when he cut loose with a long string of VERY loud vocalizations. As long as the decibel level stays where I can stand it, he has free rein to do this. But he'd also asked us to help him ID these behaviors, so I said, "TH, I think that's one of your autistic or Asperger's behaviors."
Lately, TH has had some difficulties with words--especially hearing and saying them right. A recent example was when he and Dubya were discussing a newly arrived Victoria's Secret catalogue, and TH informed Dubya that the woman in the bikini on the cover was "saxy." I just let that one go. I don't feel that the time is exactly right to correct that to sexy, much less try to explain what exactly "sexy" means. My definition likely differs from theirs anyway. Dubya, much taken with the idea, however, asked TH, "What does 'saxy' mean." And TH replied succinctly, "Hot." Starts early, doesn't it?
When I pointed out in the car that day that his vocalizing was likely one of his autistic manifestations, TH paused in mid-bawk and said, "I thought it was good to be artistic! Dubya is artistic! We're both artistic!"
After a brief clarification, I started thinking about it to myself. TH is artistic, in a unique, inimitable way. That's a manifestation of who he is, of something that is integral to himself, and we never discuss whether or not he can express that in certain situations. Of course, he has yet to try to express it with a can of spray paint on someone's office building, so perhaps that day awaits.
And he is also autistic, something that is integral to himself. Is it right or is it wrong to make him aware of appropriate places and times for expression of this part of himself--assuming that he CAN manage that expression? As with art and spray paint tagging, when the expression infringes on others, is it right to work on modulating it, saving it for a more "appropriate" setting? Even "saxy" people presumably must occasionally seek to modulate their inherent (or surgical) saxiness for specific occasions.
What say ye, all? Let's talk about it.
A few weeks ago, he informed me that his life was a misery because he has Asperger's. I tried to get him to articulate more, but what it really came down to was his favorite pet peeve about Asperger's: he hears the word "ass" in it, and that disturbs him deeply.
His brother, Dubya, will sometimes point out to TH that TH's annoying behavior of the moment is because of "the way his brain is made." Even as he makes this point and recognizes it, Dubya still requires that TH cease and desist from the behavior. Sometimes, the behavior is just simple vocalizing, loudly, while, as Dubya says, "not making any sense, General Nonsense!" Other times, it's physical, and if we don't intervene soon enough, Dubya will be the one off in a tailspin.
In public, TH really lets it all hang out sometimes, vocalizing, making this incredible series of distorted faces, flapping. Some people may disagree with this approach, but we are really trying to get TH to distinguish between appropriate and inappropriate situations for these behaviors, especially the loud vocalizing. To wit: sitting in a fairly quiet restaurant? Not the best time to make loud, startling "Wheeeeeeeeeee! Eeeeeeeee! Bawwwwk!" noises. We wouldn't address this with him if we didn't know that he really can shut those off, at least for a short time, and "save" them for later.
So, we've talked to him about those behaviors. We've asked him why he does them. He thinks it's his Asperger's, and we've told him that we think that's right. And we've talked to him about autistic behaviors as a shorthand way of letting him know that a specific behavior might be one he wants to try to save for a more private time. He's curious to identify these because he's more interested than we are in not sticking out as "weird." (Honestly, I don't care if he's weird for the sake of himself, but we have the rest of the world to contend with, too, not just for what they think, but to respect their right to a comfortable space, as well).
And we were driving in the car the other day when he cut loose with a long string of VERY loud vocalizations. As long as the decibel level stays where I can stand it, he has free rein to do this. But he'd also asked us to help him ID these behaviors, so I said, "TH, I think that's one of your autistic or Asperger's behaviors."
Lately, TH has had some difficulties with words--especially hearing and saying them right. A recent example was when he and Dubya were discussing a newly arrived Victoria's Secret catalogue, and TH informed Dubya that the woman in the bikini on the cover was "saxy." I just let that one go. I don't feel that the time is exactly right to correct that to sexy, much less try to explain what exactly "sexy" means. My definition likely differs from theirs anyway. Dubya, much taken with the idea, however, asked TH, "What does 'saxy' mean." And TH replied succinctly, "Hot." Starts early, doesn't it?
When I pointed out in the car that day that his vocalizing was likely one of his autistic manifestations, TH paused in mid-bawk and said, "I thought it was good to be artistic! Dubya is artistic! We're both artistic!"
After a brief clarification, I started thinking about it to myself. TH is artistic, in a unique, inimitable way. That's a manifestation of who he is, of something that is integral to himself, and we never discuss whether or not he can express that in certain situations. Of course, he has yet to try to express it with a can of spray paint on someone's office building, so perhaps that day awaits.
And he is also autistic, something that is integral to himself. Is it right or is it wrong to make him aware of appropriate places and times for expression of this part of himself--assuming that he CAN manage that expression? As with art and spray paint tagging, when the expression infringes on others, is it right to work on modulating it, saving it for a more "appropriate" setting? Even "saxy" people presumably must occasionally seek to modulate their inherent (or surgical) saxiness for specific occasions.
What say ye, all? Let's talk about it.
Tuesday, April 7, 2009
Another good ARD
I don't know exactly how many people in the world of autism blogs or special needs blogs get to write titles like that, but we simply have never had a "bad" ARD at TH's school. Once again, it was a room full of dedicated people all intensely focused on and knowledgeable about our son. We just walk out of there practically high on all of the professionalism and good feeling.
Third grade promises to be a doozy of a year. It's the time when the kids start splitting into different classrooms for different subjects. It's a time when all of that laid-back, good-feeling, stretched-out learning process they've had up to that moment comes to a halt and the real work of learning learning learning kicks in. Very little "free" time, we hear. They work a lot. There's TAKS testing--ye olde standardized test that all Texas schoolchildren allegedly must pass to move to the next grade. TH will have his "accommodated," meaning that he takes it in a quiet place and can have motor breaks when needed.
He'll be in "collaborative" language arts, a room with half the student/teacher ratio of the regular classroom where the two teachers are both certified, one in subject, one in special ed. They will accommodate the students as needed. For math, we had a brief and mind-blowing discussion about TH's being placed in accelerated math--yikes!--but settled for "regular" math instead. He's an odd duck when it comes to math. Processes are not his forte--he forgets almost daily how to "carry" when we're doing pencil and paper subtraction homework. But when it comes to fairly complex calculations in his head, he does pretty well. The problem is breaking down how he does it so that he can apply that to other problems. So...as usual, a split personality for a subject, showing great promise in some ways but needing a continued boost in others.
Math will be "regular" math, then, rather than accelerated. But that's a huge advance over where we were at the beginning of the year when math was behind grade.
Finally, he will receive continued aide support, continued social skills practice and support, and continued support during unstructured time. In other words, he will continue to receive exactly what he needs, when he needs it. We've really come to rely on this as a fact in the three years we've been at this school.
I first met this exact same group of people when I was pregnant with Little, in the summer of 2006. I'd never been to an ARD, had heard horror stories about what happened in ARDs, how people had to fight for their IEP needs. So much has changed since that first meeting, in which I wore a yellow-flowered mumu dress of the kind that women must resort to in the final weeks of pregnancy when their only concern is avoiding flashing netherregions to the world while not binding any part of their body in any way and checking constantly for signs that the burden is finally about to be lifted.
Since that time...2.75 years or so...these same people have worked diligently day in and day out with our son and other people's children to produce an environment where they can learn and meet their fullest potential. Safely. Trustingly. Comfortably. Our son has flourished (with a few bumps we smoothed out), he has learned, he has been nurtured, he has been appreciated and loved, and I'm not just talking about Mr. DMFP and me when I say that.
And we haven't had to raise one voice, make one threat, write one letter, or even think about putting the gloves on, much less taking them off. I often sort of mock Texas and its suburbs and highways and politics and heat and...well, just about everything--as a seventh-generation Texan, I feel I have the privilege (even as I often cry inwardly, why, oh why won't people in my family move somewhere else?). But with the safety and security of a close family here who loves and cares for our sons and this blessed, blessed group of dedicated professionals in our amazing school district, I find nothing whatsoever to mock and oh so much to be thankful for.
Third grade promises to be a doozy of a year. It's the time when the kids start splitting into different classrooms for different subjects. It's a time when all of that laid-back, good-feeling, stretched-out learning process they've had up to that moment comes to a halt and the real work of learning learning learning kicks in. Very little "free" time, we hear. They work a lot. There's TAKS testing--ye olde standardized test that all Texas schoolchildren allegedly must pass to move to the next grade. TH will have his "accommodated," meaning that he takes it in a quiet place and can have motor breaks when needed.
He'll be in "collaborative" language arts, a room with half the student/teacher ratio of the regular classroom where the two teachers are both certified, one in subject, one in special ed. They will accommodate the students as needed. For math, we had a brief and mind-blowing discussion about TH's being placed in accelerated math--yikes!--but settled for "regular" math instead. He's an odd duck when it comes to math. Processes are not his forte--he forgets almost daily how to "carry" when we're doing pencil and paper subtraction homework. But when it comes to fairly complex calculations in his head, he does pretty well. The problem is breaking down how he does it so that he can apply that to other problems. So...as usual, a split personality for a subject, showing great promise in some ways but needing a continued boost in others.
Math will be "regular" math, then, rather than accelerated. But that's a huge advance over where we were at the beginning of the year when math was behind grade.
Finally, he will receive continued aide support, continued social skills practice and support, and continued support during unstructured time. In other words, he will continue to receive exactly what he needs, when he needs it. We've really come to rely on this as a fact in the three years we've been at this school.
I first met this exact same group of people when I was pregnant with Little, in the summer of 2006. I'd never been to an ARD, had heard horror stories about what happened in ARDs, how people had to fight for their IEP needs. So much has changed since that first meeting, in which I wore a yellow-flowered mumu dress of the kind that women must resort to in the final weeks of pregnancy when their only concern is avoiding flashing netherregions to the world while not binding any part of their body in any way and checking constantly for signs that the burden is finally about to be lifted.
Since that time...2.75 years or so...these same people have worked diligently day in and day out with our son and other people's children to produce an environment where they can learn and meet their fullest potential. Safely. Trustingly. Comfortably. Our son has flourished (with a few bumps we smoothed out), he has learned, he has been nurtured, he has been appreciated and loved, and I'm not just talking about Mr. DMFP and me when I say that.
And we haven't had to raise one voice, make one threat, write one letter, or even think about putting the gloves on, much less taking them off. I often sort of mock Texas and its suburbs and highways and politics and heat and...well, just about everything--as a seventh-generation Texan, I feel I have the privilege (even as I often cry inwardly, why, oh why won't people in my family move somewhere else?). But with the safety and security of a close family here who loves and cares for our sons and this blessed, blessed group of dedicated professionals in our amazing school district, I find nothing whatsoever to mock and oh so much to be thankful for.
Friday, April 3, 2009
In which TH makes a pretty good joke
We were watching the Arbor Day Charlie Brown movie. Little Da is obsessed (uh-oh) with Charlie Brown and wants to watch one every day. We don't do that, but thanks to the seasonality of the movies, we do have a good excuse to break them out around Christmas, Easter, Thanksgiving, Halloween, the Fourth of July, and um...Arbor Day?
Anyway, at one point, a character (I think it's Schroeder) is urging Charlie Brown to just grit his teeth and pitch in the baseball game even though the other kids have planted a large tree on his pitcher's mound. In an effort at encouragement, Schroeder says, "Come on, Charlie Brown! Give it a try! Beethoven never gave up!"
We were all watching this together. As I sat there, myself pondering what it was Beethoven had never given up on and whether or not it would be true that he had never given up, TH piped up from the other end of the couch, "Well, Beethoven never had a tree growing out of his piano!"
Well played, Sir TH. Well played.
Anyway, at one point, a character (I think it's Schroeder) is urging Charlie Brown to just grit his teeth and pitch in the baseball game even though the other kids have planted a large tree on his pitcher's mound. In an effort at encouragement, Schroeder says, "Come on, Charlie Brown! Give it a try! Beethoven never gave up!"
We were all watching this together. As I sat there, myself pondering what it was Beethoven had never given up on and whether or not it would be true that he had never given up, TH piped up from the other end of the couch, "Well, Beethoven never had a tree growing out of his piano!"
Well played, Sir TH. Well played.
Wednesday, April 1, 2009
Does anyone know the way to Common Ground?
I've mentioned here before that I live in Texas. Yes, we're the state that bred George W. Bush, even if we didn't birth him, and yes, we're a house divided about him. We're the state that will now replace Kansas as the United States' official backassward backwater anti-science icon thanks to the fact that the guy who's in charge of educational decisions for the state thinks the Earth is 6000 years old (I always wonder--have these people ever been to Wupatki? Well, that's not all I wonder, but it's a start). Yet, not all Texans are in line with his belief, not by any stretch.
Our elected officials appear to be ready to vote to allow guns on college campuses (OK Corral U, anyone?), guns locked into cars in workplaces (???--Hold on a minute, Mass Murderer, while I grab my keys?), and--this is a really good one--absolve people who carry guns into places where it's an offense to have a gun, like bars, from any guilt if said establishment doesn't have the appropriate signs posted warning that carrying a weapon in said establishments is illegal. I'm gonna try that one the next time I run a red light. "But officer, there was not a sign explaining that running that light was illegal!"
Add to that the increasing desertification of where we live and the encroaching drug violence from Mexico, and...really, who wouldn't want to live here?
All of this is a preamble to observing that lately, I've been feeling really really misanthropic. More so than usual, which is really saying something. Irritated. Annoyed. Ready to start believing that the human species is diverging along two different evolutionary paths (one's red, one's blue? One doesn't "believe" in evolution, while the other accepts it as a scientific fact, and regardless, both are evolving? Wonder which one of us will be the chimps and which will be the orangs in this new planet of the apes). Is it just me, or do we seem more divided than ever, more implacably split into two, around the globe? For every culture I read about, there's this split, this divide, and it's not between the haves and have nots as much as it is between the Big Endians and the Little....I mean, between those who see in black and white and those who visualize in halftone. Foxes vs. hedghehogs. Literalists vs. equivocationists. Moralists vs. pragmatists. Even when people who can find common ground offer it up, both sides scuttle away as though it were toxic territory and refuse to engage.
What sort of world will our sons grow up to find? I'm individually torn myself between wanting them to have a broad understanding of this planet and its peoples and wanting them to experience only what's directly relevant to their lives. In fact, I've considered just finding a cave for us to live in. How else to deal with the battles--some directly deadly, some more akin to soul killing--in which no one really has a clean stake yet no one can see the other side? A fight between "Let everyone sweep in front of his own doorstep, and the whole world will be clean" and "Hey, you know what? You've got dirt on your doorstep. Let me help you with that." A struggle between the individual good and the common good. Between insularity and outreach. I tend to be insular as an individual while still yearning to reach out and help others. Can we embody both? Where, whether in ourselves or in our culture or among one another, can we find the common ground between the two?
If there's no common ground left, or if that ground is shrinking so rapidly that no one can find a mutual foothold, what lessons can we teach our children--autistic, artistic, opportunistic, whatever--about how to navigate the future? I've looked a bit into that future, and all I can see from here right now is an ever-widening chasm. How are we going to rear children who know how to find the bridges? And when they're adults, will there be any bridges left? Or will we all have returned to living in caves--literal or otherwise?
Lots of questions, and as usual, I don't have good answers. Got one more, though: Does anyone know of a good cave up for grabs, preferably with broadband?
Our elected officials appear to be ready to vote to allow guns on college campuses (OK Corral U, anyone?), guns locked into cars in workplaces (???--Hold on a minute, Mass Murderer, while I grab my keys?), and--this is a really good one--absolve people who carry guns into places where it's an offense to have a gun, like bars, from any guilt if said establishment doesn't have the appropriate signs posted warning that carrying a weapon in said establishments is illegal. I'm gonna try that one the next time I run a red light. "But officer, there was not a sign explaining that running that light was illegal!"
Add to that the increasing desertification of where we live and the encroaching drug violence from Mexico, and...really, who wouldn't want to live here?
All of this is a preamble to observing that lately, I've been feeling really really misanthropic. More so than usual, which is really saying something. Irritated. Annoyed. Ready to start believing that the human species is diverging along two different evolutionary paths (one's red, one's blue? One doesn't "believe" in evolution, while the other accepts it as a scientific fact, and regardless, both are evolving? Wonder which one of us will be the chimps and which will be the orangs in this new planet of the apes). Is it just me, or do we seem more divided than ever, more implacably split into two, around the globe? For every culture I read about, there's this split, this divide, and it's not between the haves and have nots as much as it is between the Big Endians and the Little....I mean, between those who see in black and white and those who visualize in halftone. Foxes vs. hedghehogs. Literalists vs. equivocationists. Moralists vs. pragmatists. Even when people who can find common ground offer it up, both sides scuttle away as though it were toxic territory and refuse to engage.
What sort of world will our sons grow up to find? I'm individually torn myself between wanting them to have a broad understanding of this planet and its peoples and wanting them to experience only what's directly relevant to their lives. In fact, I've considered just finding a cave for us to live in. How else to deal with the battles--some directly deadly, some more akin to soul killing--in which no one really has a clean stake yet no one can see the other side? A fight between "Let everyone sweep in front of his own doorstep, and the whole world will be clean" and "Hey, you know what? You've got dirt on your doorstep. Let me help you with that." A struggle between the individual good and the common good. Between insularity and outreach. I tend to be insular as an individual while still yearning to reach out and help others. Can we embody both? Where, whether in ourselves or in our culture or among one another, can we find the common ground between the two?
If there's no common ground left, or if that ground is shrinking so rapidly that no one can find a mutual foothold, what lessons can we teach our children--autistic, artistic, opportunistic, whatever--about how to navigate the future? I've looked a bit into that future, and all I can see from here right now is an ever-widening chasm. How are we going to rear children who know how to find the bridges? And when they're adults, will there be any bridges left? Or will we all have returned to living in caves--literal or otherwise?
Lots of questions, and as usual, I don't have good answers. Got one more, though: Does anyone know of a good cave up for grabs, preferably with broadband?
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