Nausea set in hours before departure. As with so many events in my life, gastroenteritis decided to make an uninvited entrance. Nevertheless, I made it to Houston, Mr. DMFP driving, only to find that I'd booked reservations for us at the wrong hotel. Apparently, there are three Holiday Inns in the medical district. Three. We arrived at the one I hadn't booked, took about 15 minutes to find the one I had, and then had to walk by the window of a grossly obese man with a huge chest scar, which he was proudly flaunting, shirtless, from a chair in his ground-floor room. With the window wide open. Facing onto the parking lot. On purpose. We were sure of that. As if I weren't nauseated enough, buddy.
The Holiday Inn we were booked into does not have room service. It was 9 p.m. My vision had been to ameliorate the somberness of the occasion by making an "order in room service have some great quiet snuggling time without the kids with the A/C jacked up on high in the hotel room" kind of evening. Instead, it was a "no room service, A/C took awhile to kick in, damn I'm freaking tired and feel like I'm gonna throw up" kind of evening. Seriously. Story of my life. We punted, Mr. DMFP picking up the biggest serving of halibut I've ever seen from Pappadeaux. Me, a Sprite.
Then the people next door started screaming at each other. Loudly. I called the front desk at 11:30 p.m. He went to ask them to be quiet. Midnight, noises emanating from the room as though they were playing basketball in there. Called the desk again, and the poor beleaguered fellow sighed to me that they were going to ask these folks to leave tomorrow, hinting that they were troublemakers. Troublemakers, who, by the way, had left their children unattended in the room, hence the basketball game. Where were they, you ask? Apparently outside having a marathon smoking session.
Bad night, much intestinal discomfort. My only prayer was that I wouldn't hurl on Dr. Top MS Specialist at 9 a.m. the next morning. And I didn't.
The upshot of this entire adventure? He didn't say I'm crazy! (Yay!). He did say he'd talk to my home neuro about meds for pain and fatigue (Yay!). He's still reviewing my MRIs, so nothing definitive (yeah). And because of a certain little pesky list of criteria called the McDonald Criteria, I'll be going back to Houston for a last (I hope) round of tests, tests that measure the time it takes my central nervous system to respond to triggers (yep). Positives on these tests are highly indicative of MS. Negatives, not that much help either way. They don't rule anything out. (Sigh. Most testing for MS is like this.)
He talked a lot about PPMS, said that if there were drugs available for treatment right now, he'd call it that. But he wants to avoid doing that until he's got an objective clinical measure because once they slap that label on you, insurance won't have you. And I've already been rejected by private insurance for much less compelling reasons. Yes, I'm one of those people who has no choice thanks to "pre-existing conditions." All that can be done right now is what's being done: Meds for the symptoms, to alleviate distracting pain and fatigue.
And, as has been the case since October 2007...testing, testing, testing. Seemingly ad infinitum.
We now take you back to our regularly scheduled parenting blog. Thanks to everyone for their well wishes, thoughts, and prayers. It's a notoriously frustrating and slow road, this one.
A blog about parenting, working, worrying, science, writing, worrying, and autism.
Wednesday, September 30, 2009
Monday, September 28, 2009
Schooled by a preschooler
In the Great Order of Being, younger siblings are supposed to be, well, younger. But that Great Order doesn't take into account developmental delays or differences, and so it has already happened in our home that the three-year-old tells the eight-year-old How Things Are. Or, as my mother frequently says in her folksy, homespun way that does not quite mesh with her scholarly work as a medievalist and linguist, he told TH "how the cow ate the cabbage."
In this case, the cow was a writing implement. We've had an outbreak of eddymacationitis around here, with both Dubya and TH coming home from school, hell bent on schooling their baby brother. Little Da takes it in pretty good spirits, carefully answering all of Dubya's over-his-head math problems with a hopeful, "Two!" and applying himself diligently to the tracing of geometric shapes. I draw the line when Dubya tries to give me "homework" that I'm supposed to do with Little. I've got enough elementary-school work I'm repeating around here, thanks.
So, yesterday, a "day of rest" in which some of us did much resting, TH got the teaching bug, too. He rounded up Little and some paper and pens and got to work, trying to get him to write some letters. And that's when the teacher became the taught. TH still holds all writing implements in an impossible-seeming fisted grasp. We don't understand how he writes that way--it does not seem physically possible. Given that we have yet to break any laws of physics around here and that TH does, in fact, write (although almost completely illegibly), we must accept that it is.
Little is already engaged in the Handwriting without Tears program at his preschool. There are songs about how to hold a pencil. I don't know the song, but it involves the behavior of a thumb, an index finger, and a middle finger (not that kind of behavior). TH's grasp involves all five digits and a wrist perpendicular to the page. We've tried, for years, with all kinds of grips and shorty pencils and crayons and OT, all to no avail. In fact, he intellectually argues against changing his grip because to him, it's part of what makes him unique. He gets teary if we try to make him change it. That's kind of hard to resist, especially given that in a year or two, it's all gonna be keyboarding anyway. I happen to type at warp speed using two hands and six fingers (no thumbs, no pinkies! So overrated), so I feel that he's gonna be OK.
But Little Da lacks this foresight, and when his big brother and tutor TH started writing out the letters for his pupil to practice, the pupil had a little teaching of his own to do. He seized the pen from TH's fisted grasp and admonished, "THAT's not how we hold our pencil! We hold it like this!" And he executed a perfect tripod grasp.
TH was highly amused, as he is about most things. But I wonder if, with age, this amusement at their relative places on the developmental track, sometimes a reversal of the Great Order of Being, may not be quite so entertaining to him. We'll see.
In this case, the cow was a writing implement. We've had an outbreak of eddymacationitis around here, with both Dubya and TH coming home from school, hell bent on schooling their baby brother. Little Da takes it in pretty good spirits, carefully answering all of Dubya's over-his-head math problems with a hopeful, "Two!" and applying himself diligently to the tracing of geometric shapes. I draw the line when Dubya tries to give me "homework" that I'm supposed to do with Little. I've got enough elementary-school work I'm repeating around here, thanks.
So, yesterday, a "day of rest" in which some of us did much resting, TH got the teaching bug, too. He rounded up Little and some paper and pens and got to work, trying to get him to write some letters. And that's when the teacher became the taught. TH still holds all writing implements in an impossible-seeming fisted grasp. We don't understand how he writes that way--it does not seem physically possible. Given that we have yet to break any laws of physics around here and that TH does, in fact, write (although almost completely illegibly), we must accept that it is.
Little is already engaged in the Handwriting without Tears program at his preschool. There are songs about how to hold a pencil. I don't know the song, but it involves the behavior of a thumb, an index finger, and a middle finger (not that kind of behavior). TH's grasp involves all five digits and a wrist perpendicular to the page. We've tried, for years, with all kinds of grips and shorty pencils and crayons and OT, all to no avail. In fact, he intellectually argues against changing his grip because to him, it's part of what makes him unique. He gets teary if we try to make him change it. That's kind of hard to resist, especially given that in a year or two, it's all gonna be keyboarding anyway. I happen to type at warp speed using two hands and six fingers (no thumbs, no pinkies! So overrated), so I feel that he's gonna be OK.
But Little Da lacks this foresight, and when his big brother and tutor TH started writing out the letters for his pupil to practice, the pupil had a little teaching of his own to do. He seized the pen from TH's fisted grasp and admonished, "THAT's not how we hold our pencil! We hold it like this!" And he executed a perfect tripod grasp.
TH was highly amused, as he is about most things. But I wonder if, with age, this amusement at their relative places on the developmental track, sometimes a reversal of the Great Order of Being, may not be quite so entertaining to him. We'll see.
Saturday, September 26, 2009
And now, about neurological disorders
And by that, I mean a genuine neurological disorder, not something I was born with, not something that I'd use to identify myself. Not something that I'd proudly bear as being a part of me. Indeed, something I might melodramatically refer to on bad days as a manifestation of the devil if I didn't really know that it's a manifestation of a degraded and scarred myelin sheath that's not doing its job right any more.
I haven't blogged about it much (no pity parties, please), but it's with me every day. It walks with me and makes it hard for me to walk after just a few steps. It sleeps with me and wakes me with pain. It types with me until my arms and hands feel like collapsing from the keyboard. It tries to pin me to the chair as I attempt to rise. It leaves me helplessly supine on the couch at night, robs me of my energy, saps my strength from all four limbs, and makes my eyes cry for no reason. I don't think it will ruin my marriage, but it has done that to other people. It has ruined my digestion, leaving me permanently on heavy-hitting GERD drugs. It does kind of embarrass me, the way I now walk with no grace, lurching along like a younger, female Boris Karloff. It may be taking away my youth, my hopes for an active old age, my secret dreams (OK, I do dream sometimes) of hiking through retirement with my soul mate by my side.
It also makes me second-guess myself in ways that drive me crazy. It's hard for me to accept that sheer willpower won't push me through that fatigue or weakness the way it used to. If you've relied on willpower to achieve when all else fails, and now that fails you, too...you start to wonder if you've just given up or what. You start to think, "Wow, DMFP, you're just getting really really lazy or something. Just TRY!" But yelling doesn't seem to help. And people look at you oddly when you yell at yourself.
Before I got to a diagnosis of "cervical myelopathy possibly because of multiple sclerosis," I went through some interesting times. These included having one neurologist--who is still my neurologist, our having achieved detente--accuse me of having a partial conversion disorder. In real people terms, that part of it was "all in my head." I had a second neurologist decide, based on zero clinical or symptomatic evidence, that I had restless leg syndrome (!). Then, I had MRIs with spine lesions, which kinda rules out those two things, and some people started paying attention and then one of the country's top neurologists in Houston gave me that latest: cervical cord myelopathy (at C3) possibly multiple sclerosis."A cervical spine myelopathy and thoracic cord lesions don't have other causes than demyelinating disease (i.e., multiple sclerosis). All other causes have been ruled out. For reasons that are esoteric to the profession, no one has said, unequivocally, "You have multiple sclerosis." To a certain point, you get "possible," "probable," and "confirmed."
Next week, I have an appointment with a specialist in primary progressive multiple sclerosis (PPMS), and I'm scared shitless about it for so many reasons. Will he tell me I'm crazy, too? Will he blow me off, as so many doctors have done to patients in my situation (time to diagnosis from symptom onset with PPMS can be years)? Will he say I have PPMS, sealing the fate that somewhere at my core I sealed for myself a year ago? Will this be a huge waste of time and money leaving me with no real answers and no real options? In reality, I expect to leave with what I take in: myelopathy, possible PPMS. Which leaves me right where I am now. So, why am I doing it? I'm trying to trust my doctors, which is difficult for me. It's part character-building exercise, part self torture, part a sense of duty, all angst inducing.
Fear. I hate fear. But I'm afraid. Even if he says "PPMS," he can't do much about it. There are therapies for other types of MS, but not for this one, not in women. It just is. Sorry.
So, for the last couple of days and for the next few days, I have resigned myself to living inside this little bubble of fear. Fear of being dismissed. Fear of being diagnosed. And as much as I try not to peer into the future--what's the point?--a fear of the future. Will I be able to hike with my children in a few years? Drive? Walk? Sleep a full night without pain? Type, the core of what I do for a living? Will I have "cognitive issues" that sap me of the only real thing I've got going for me in the long term? Will I start peeing on myself? Gah!
When I reach that point, I usually stop trying to see into the future and re-focus my energies on today. Usually, that works. But this time, today is just a few days before That Day, and all I've got all around me is fear. And I don't see a choice of resolutions here that's going to make that go away. Unless, of course, whatever the hell this is just suddenly packs up and wanders off, leaving me to walk along without it, which would be just fine by me.
I haven't blogged about it much (no pity parties, please), but it's with me every day. It walks with me and makes it hard for me to walk after just a few steps. It sleeps with me and wakes me with pain. It types with me until my arms and hands feel like collapsing from the keyboard. It tries to pin me to the chair as I attempt to rise. It leaves me helplessly supine on the couch at night, robs me of my energy, saps my strength from all four limbs, and makes my eyes cry for no reason. I don't think it will ruin my marriage, but it has done that to other people. It has ruined my digestion, leaving me permanently on heavy-hitting GERD drugs. It does kind of embarrass me, the way I now walk with no grace, lurching along like a younger, female Boris Karloff. It may be taking away my youth, my hopes for an active old age, my secret dreams (OK, I do dream sometimes) of hiking through retirement with my soul mate by my side.
It also makes me second-guess myself in ways that drive me crazy. It's hard for me to accept that sheer willpower won't push me through that fatigue or weakness the way it used to. If you've relied on willpower to achieve when all else fails, and now that fails you, too...you start to wonder if you've just given up or what. You start to think, "Wow, DMFP, you're just getting really really lazy or something. Just TRY!" But yelling doesn't seem to help. And people look at you oddly when you yell at yourself.
Before I got to a diagnosis of "cervical myelopathy possibly because of multiple sclerosis," I went through some interesting times. These included having one neurologist--who is still my neurologist, our having achieved detente--accuse me of having a partial conversion disorder. In real people terms, that part of it was "all in my head." I had a second neurologist decide, based on zero clinical or symptomatic evidence, that I had restless leg syndrome (!). Then, I had MRIs with spine lesions, which kinda rules out those two things, and some people started paying attention and then one of the country's top neurologists in Houston gave me that latest: cervical cord myelopathy (at C3) possibly multiple sclerosis."A cervical spine myelopathy and thoracic cord lesions don't have other causes than demyelinating disease (i.e., multiple sclerosis). All other causes have been ruled out. For reasons that are esoteric to the profession, no one has said, unequivocally, "You have multiple sclerosis." To a certain point, you get "possible," "probable," and "confirmed."
Next week, I have an appointment with a specialist in primary progressive multiple sclerosis (PPMS), and I'm scared shitless about it for so many reasons. Will he tell me I'm crazy, too? Will he blow me off, as so many doctors have done to patients in my situation (time to diagnosis from symptom onset with PPMS can be years)? Will he say I have PPMS, sealing the fate that somewhere at my core I sealed for myself a year ago? Will this be a huge waste of time and money leaving me with no real answers and no real options? In reality, I expect to leave with what I take in: myelopathy, possible PPMS. Which leaves me right where I am now. So, why am I doing it? I'm trying to trust my doctors, which is difficult for me. It's part character-building exercise, part self torture, part a sense of duty, all angst inducing.
Fear. I hate fear. But I'm afraid. Even if he says "PPMS," he can't do much about it. There are therapies for other types of MS, but not for this one, not in women. It just is. Sorry.
So, for the last couple of days and for the next few days, I have resigned myself to living inside this little bubble of fear. Fear of being dismissed. Fear of being diagnosed. And as much as I try not to peer into the future--what's the point?--a fear of the future. Will I be able to hike with my children in a few years? Drive? Walk? Sleep a full night without pain? Type, the core of what I do for a living? Will I have "cognitive issues" that sap me of the only real thing I've got going for me in the long term? Will I start peeing on myself? Gah!
When I reach that point, I usually stop trying to see into the future and re-focus my energies on today. Usually, that works. But this time, today is just a few days before That Day, and all I've got all around me is fear. And I don't see a choice of resolutions here that's going to make that go away. Unless, of course, whatever the hell this is just suddenly packs up and wanders off, leaving me to walk along without it, which would be just fine by me.
Friday, September 25, 2009
The state of the science
My little seven-year-old empty shell turned into a sunny little fellow when it came to his assignment for "Sun Facts!!!"
Translation: "The sun is a star made of gas. The sun gives global warming to the Earth. The sun is a star. Without the sun, the Earth wouldn't have any life."
That last sentence isn't exactly true, but hey...it's first grade. We'll clarify later.
His picture is a sunset. And those little tiny things on the mountain on the left? That's us, the DMFP family. I'm pretty sure I'm the one coming in dead last, thinking about turning back with every incremental increase in altitude. I mean, look at the angle of the slope on that thing.
I have a feeling a child headshrinker type could have a field day with this picture.
An SLP might also have a good time with it. I'm pretty sure the invented spelling is a direct reflection of how he hears these words. It certainly reflects how he says them. And I wunt haf it ine udder way from my favorite seven-year-old on this Urf.
Thursday, September 24, 2009
An empty shell
No, it's not about another new and offensive autism video. It's something my son said to me yesterday. And no, not my son with autism, who never feels like an empty shell, for the record, who is almost preternaturally good humored, who has such a rich inner life that he wouldn't feel empty if he were Charlton Heston's character in The Omega Man. No, this empty shell is Dubya.
Who turned seven yesterday.
He had a great birthday party after school, shared with a buddy of his who was born on the same day. Our school has this fantastic offering of after-school parties in the gym that the phys ed teacher leads. No fuss, no muss. Show up with cake, let her do the rest. It's a parent's party dream, and the kids LOVE it. They had a great time, and each of the boys went home with Santa Claus-sized bags full of gifts. Dubya's already built four of the smaller Lego sets he received.
But after the party, as we drove home, I had the boys recap their days, as usual. And Dubya told me that they'd had to have inside recess (thanks to this interminable, blessed blessed, drought-relieving cool rain we've been having). During that recess with another class, the kids at one point had to self group into threes. Dubya found himself wandering, alone, unable to find a group. He asked a few and they rejected him. On his birthday.
What do you say? All I could say to my son, whose self esteem on a good day is not the sturdiest, was, "Sweetie, you can always be in my group, any time. I'll always let you in." And he actually thanked me sincerely, bless his courteous little heart.
After TH had reported on his day, I reverted to Dubya and said, "So, did you have a good birthday day overall?" And he said, "Well, at school, I really just felt like an empty shell most of the day." That's the kind of thing that just...well, it's hard to even keep driving the car home when your child says something like that. On his birthday. When he's just turned seven.
I asked him why, knowing the answer. Yes, it was about that episode at recess. I wish there had been some observant adult around who could have seen that, facilitated his admission into a group. But there wasn't. And I had already noticed, without wanting to, that when the two birthday boys were choosing teams in the after-school gym party, the kids excitedly wanted to be on the other boy's team, but not on Dubya's.
When I got home with my little empty seven-year-old shell, I called his dad and asked him to get home from work as soon as he could. And we had a little party of our own at home where we tried to fill up the little shell as much as we could with love and attention and cake and ice cream and enormous boxes of Star Wars Legos as we had tucked away for him in the closet.
But that's not going to protect our most fragile child from the crushing weight of social rejection at school. Do we have to learn this early how little we can really do for our children out there in the great big world? After all, he's only seven.
Who turned seven yesterday.
He had a great birthday party after school, shared with a buddy of his who was born on the same day. Our school has this fantastic offering of after-school parties in the gym that the phys ed teacher leads. No fuss, no muss. Show up with cake, let her do the rest. It's a parent's party dream, and the kids LOVE it. They had a great time, and each of the boys went home with Santa Claus-sized bags full of gifts. Dubya's already built four of the smaller Lego sets he received.
But after the party, as we drove home, I had the boys recap their days, as usual. And Dubya told me that they'd had to have inside recess (thanks to this interminable, blessed blessed, drought-relieving cool rain we've been having). During that recess with another class, the kids at one point had to self group into threes. Dubya found himself wandering, alone, unable to find a group. He asked a few and they rejected him. On his birthday.
What do you say? All I could say to my son, whose self esteem on a good day is not the sturdiest, was, "Sweetie, you can always be in my group, any time. I'll always let you in." And he actually thanked me sincerely, bless his courteous little heart.
After TH had reported on his day, I reverted to Dubya and said, "So, did you have a good birthday day overall?" And he said, "Well, at school, I really just felt like an empty shell most of the day." That's the kind of thing that just...well, it's hard to even keep driving the car home when your child says something like that. On his birthday. When he's just turned seven.
I asked him why, knowing the answer. Yes, it was about that episode at recess. I wish there had been some observant adult around who could have seen that, facilitated his admission into a group. But there wasn't. And I had already noticed, without wanting to, that when the two birthday boys were choosing teams in the after-school gym party, the kids excitedly wanted to be on the other boy's team, but not on Dubya's.
When I got home with my little empty seven-year-old shell, I called his dad and asked him to get home from work as soon as he could. And we had a little party of our own at home where we tried to fill up the little shell as much as we could with love and attention and cake and ice cream and enormous boxes of Star Wars Legos as we had tucked away for him in the closet.
But that's not going to protect our most fragile child from the crushing weight of social rejection at school. Do we have to learn this early how little we can really do for our children out there in the great big world? After all, he's only seven.
Tuesday, September 22, 2009
What if someone did this with, say, Down's Syndrome?
New, from Autism Speaks. Autism as a devil personified, promising to destroy your marriage and "move faster than pediatric AIDS," whatever the hell that means. This is horrific. I cannot believe that these people thought it was OK to demonize a developmental disorder in this way, behaving as though autism were something separate from the people who have it, like a wart or a blight or a boil that should be burned off or lanced and drained before it infects someone else or destroys your marriage, rather than what it really is, a differential neural construct that is just as much a part of the people who have it as their eye color.
Is there any other developmental difference or genetic disorder that could be vilified in this way with an assumption of impunity? Dyslexia? Schizophrenia? Tourette's? Depression? Chromosomal disorders? Doubt it. I get that people have enormous struggles with autism in their children and want improvement or cure. I think that Autism Speaks thinks that this is some kind of shock fundraising gambit for their "cause." But I can't think of a moral justification for this offensiveness. It is simply offensive.
Is there any other developmental difference or genetic disorder that could be vilified in this way with an assumption of impunity? Dyslexia? Schizophrenia? Tourette's? Depression? Chromosomal disorders? Doubt it. I get that people have enormous struggles with autism in their children and want improvement or cure. I think that Autism Speaks thinks that this is some kind of shock fundraising gambit for their "cause." But I can't think of a moral justification for this offensiveness. It is simply offensive.
Friday, September 18, 2009
Hebby
Things have gotten a bit heavy...or, as Little would say, "Hebby"...around here lately, so I bring you, Dear Reader, a few Little-isms of recent vintage (speaking of hebby and "Dear Reader," I just started a 1300-page biography of Dickens. I'll see you in a few months). The child who couldn't speak a word at 18 months and instead grunted like a deranged chimpanzee is now voluble (with us) and has a nice little vocab for a three year old. Of course, take him to the pediatrician he's had for his entire life, ask him to stand on the innocuous-looking scale, a small, flat square on the floor, and you get a silent, floor-wallowing meltdown that lasts 30 minutes. Other than that, though...very chatty.
His favorite thing to say when told "no" is "Darnit!" This is a word that, like "shoot" has become OK for a child to say. When I was a child, it still was close cousin enough to dammit to warrant a warning glance and an admonition to "watch my language." I was watching my language, dammit, and I watched it say "darnit."
Anyway...Little also has awareness of other people and emotions that I don't recall his brothers exhibiting at this age. Of course, TH was on the border of his diagnosis at this point and freaking out small children all over the Bay Area, and Dubya has always resided primarily on Planet Dubya, maintaining only a pied a terre here on Earth (kind of literally, there). So Little's awareness of the world around him is a new thing for us. For example, that parent speak you use when you're talking about something right in front of your kids that you don't want them to know you're talking about? TH, still oblivious. Dubya, same. Little? That kid doesn't miss a beat. We've had to resort to Spanish to get around him.
He also pays attention to what you say and will inform others of it later. We have a particularly onerous stoplight at the exit from our neighborhood, one I must drive through many times a day, and certainly every morning driving my three offspring to school. I must express my lack of love for this light frequently, because last week, Mr. DMFP drove the boys to school and as he stopped dutifully at the endlessly red and mercilessly short green illuminated devil, Little informed him helpfully that "Mama hates this light." And it's true. I do. TH and Dubya probably don't even know there's a light there.
He's making friends, another new development for us with a child this age. He's got two, and he blurted to me the other day after school that they are his "best buddies." I almost needed a tissue. And then yesterday, in the middle of an unusual and rare silence in the car, he stated, "I made a new friend today." After recovering from the near-faint that the novelty of the various elements of this statement almost brought on, I said, "What's his name?" "He's not a boy," Little stated. Confusing, but I forged on. "Well, is he a girl?" Now, I was confused, too. "Not a gweeeelll," he muttered, getting annoyed. "He has vanilla hair, like me. We both have vanilla hair."
Blond, vanilla. Obviously, along with his advanced powers of observation and burgeoning circle of friends, this child possesses the soul of a poet. I just hope it's a poet I like, like cummings or Yeats. Lord, please don't be Bukowski. He's just a tad too hebby for me.
His favorite thing to say when told "no" is "Darnit!" This is a word that, like "shoot" has become OK for a child to say. When I was a child, it still was close cousin enough to dammit to warrant a warning glance and an admonition to "watch my language." I was watching my language, dammit, and I watched it say "darnit."
Anyway...Little also has awareness of other people and emotions that I don't recall his brothers exhibiting at this age. Of course, TH was on the border of his diagnosis at this point and freaking out small children all over the Bay Area, and Dubya has always resided primarily on Planet Dubya, maintaining only a pied a terre here on Earth (kind of literally, there). So Little's awareness of the world around him is a new thing for us. For example, that parent speak you use when you're talking about something right in front of your kids that you don't want them to know you're talking about? TH, still oblivious. Dubya, same. Little? That kid doesn't miss a beat. We've had to resort to Spanish to get around him.
He also pays attention to what you say and will inform others of it later. We have a particularly onerous stoplight at the exit from our neighborhood, one I must drive through many times a day, and certainly every morning driving my three offspring to school. I must express my lack of love for this light frequently, because last week, Mr. DMFP drove the boys to school and as he stopped dutifully at the endlessly red and mercilessly short green illuminated devil, Little informed him helpfully that "Mama hates this light." And it's true. I do. TH and Dubya probably don't even know there's a light there.
He's making friends, another new development for us with a child this age. He's got two, and he blurted to me the other day after school that they are his "best buddies." I almost needed a tissue. And then yesterday, in the middle of an unusual and rare silence in the car, he stated, "I made a new friend today." After recovering from the near-faint that the novelty of the various elements of this statement almost brought on, I said, "What's his name?" "He's not a boy," Little stated. Confusing, but I forged on. "Well, is he a girl?" Now, I was confused, too. "Not a gweeeelll," he muttered, getting annoyed. "He has vanilla hair, like me. We both have vanilla hair."
Blond, vanilla. Obviously, along with his advanced powers of observation and burgeoning circle of friends, this child possesses the soul of a poet. I just hope it's a poet I like, like cummings or Yeats. Lord, please don't be Bukowski. He's just a tad too hebby for me.
Wednesday, September 16, 2009
A gut feeling
I have a gut feeling. As much as rely, as heavily as I rely, on analysis and rational thought and other stuff related to my frontal cortex, I can't ignore my strong intuitions, either. My inability is actually rooted in logic: My gut, like the turtle's butt tingle in Over the Hedge, doesn't often lead me wrong. Especially when it comes to TH.
For the last couple of weeks, something has chewed on me, distracted me even in the midst of some kind of jungle fever affliction that has almost incapacitated me for days. It has weighted my mind, left me a mental jumble of wandering thoughts and ideas, unsure about what to do. That something is what to do about TH's education.
I'd ascribe all of this to my own personal distaste for mass-produced eddymacation, to my own experiences with the dull boredom of a worksheet-plastered classroom, but I've got a control group: Dubya. He's flourishing. He engages with the worksheets and little projects and endless "Draw this" and "collect this for math" assignments. He squeezes out of these every little bit of creativity and learning that they have to offer. He's happy. He's engaged. He's learning.
So much of learning--all of learning?--is really autodidactic in the end. You decide, "I want to learn this," and you learn it. Dubya is there. His acquisitive and inquisitive mind takes him sideways and up and down and over and under everything he encounters in class. That child could find something interesting to learn even from a Dickensian schoolmaster wielding a lash.
TH, not so much. As we may all recall, he has Asperger's. With that comes the fixation, the subject obsession, the monomania. His is so deceptively "of the norm" in some ways that people may not realize or remember that for him, it's his sole interest. By "people," I mean "his parents." But it sticks. It remains. All he thinks about, the only things he really, truly learns, are details and facts related to science and nature, plants and animals. Berries. Acorns.
I don't think he's ever going to change. I don't think he's going to become a polymath, someone who finds deep interest in numerous paths of learning, the way Dubya seems to be doing. I think TH found his calling when he was about six months old, and it will remain his calling. That, and Pokemon. This is a child who informed me apropos of nothing the other evening that black mambas can reach lengths of 14 feet. I was skeptical, knowing that they're usually around 8 or 9 feet. So, we looked it up. And he was right. That kind of thing happens to me a lot, and I'm the biologist here. Well, one of them, apparently.
And I've known for a long time that the best way to reach TH is through his love of science and nature. Yet now, we're immersed in four-letter spelling words that we have to practice while bouncing balls and spelling them with household goods that cost money and playing hangman. We have math that involves digging the Sunday paper out of the recycling bin at the street so that we can clip ads out with prices on them and arrange them in order of cost. It involves rote learning, worksheets, rote learning, and worksheets. It involves a completely disengaged TH who also keeps forgetting to take his snack from homeroom to language arts and doesn't eat his lunch at lunch because he "forgets."
TH came home two days ago and announced to me that if he were teaching third grade, he'd use things from "the real world" because, he asserted, what they're studying now never has anything to do with the real world. He wants to learn about cells and plants and animals and berries, he said. If he were teaching, he said, he'd do math through these real-world things, do vocabulary related to them, do social studies related to them. He actually described an entire unit focused on a geographical area with associated flora and fauna, using math and vocabulary related to it, incorporating its history and "famous people." Yes, he devised a comprehensive teaching unit in ways that only the cleverest teachers can manage.
And it happens to be exactly the way I'd teach this particular child of mine if I were his teacher. Which takes me to the thing that has been roiling around my intuition, alerting my mom radar, leading me to ask myself with unassailable logic: Is TH in the learning environment that is best for him? Would homeschooling be better? I've asked it before, last year, when things hit a nadir. We upped throttle at the last minute, and he ended up having a great year. But my intrusive and annoying intuition is not feeling so sanguine this time.
My reinforcements arrived last night when TH came to me for the fifth night in a row after lights out--a sure sign that something is on his mind--and babbled aimlessly and anxiously for 30 minutes before I finally had to send him to bed. And as he said goodnight and started to turn away, there were tears in his eyes. From my child who almost never cries. He couldn't say why.
Crap. There's that stupid gut feeling again.
For the last couple of weeks, something has chewed on me, distracted me even in the midst of some kind of jungle fever affliction that has almost incapacitated me for days. It has weighted my mind, left me a mental jumble of wandering thoughts and ideas, unsure about what to do. That something is what to do about TH's education.
I'd ascribe all of this to my own personal distaste for mass-produced eddymacation, to my own experiences with the dull boredom of a worksheet-plastered classroom, but I've got a control group: Dubya. He's flourishing. He engages with the worksheets and little projects and endless "Draw this" and "collect this for math" assignments. He squeezes out of these every little bit of creativity and learning that they have to offer. He's happy. He's engaged. He's learning.
So much of learning--all of learning?--is really autodidactic in the end. You decide, "I want to learn this," and you learn it. Dubya is there. His acquisitive and inquisitive mind takes him sideways and up and down and over and under everything he encounters in class. That child could find something interesting to learn even from a Dickensian schoolmaster wielding a lash.
TH, not so much. As we may all recall, he has Asperger's. With that comes the fixation, the subject obsession, the monomania. His is so deceptively "of the norm" in some ways that people may not realize or remember that for him, it's his sole interest. By "people," I mean "his parents." But it sticks. It remains. All he thinks about, the only things he really, truly learns, are details and facts related to science and nature, plants and animals. Berries. Acorns.
I don't think he's ever going to change. I don't think he's going to become a polymath, someone who finds deep interest in numerous paths of learning, the way Dubya seems to be doing. I think TH found his calling when he was about six months old, and it will remain his calling. That, and Pokemon. This is a child who informed me apropos of nothing the other evening that black mambas can reach lengths of 14 feet. I was skeptical, knowing that they're usually around 8 or 9 feet. So, we looked it up. And he was right. That kind of thing happens to me a lot, and I'm the biologist here. Well, one of them, apparently.
And I've known for a long time that the best way to reach TH is through his love of science and nature. Yet now, we're immersed in four-letter spelling words that we have to practice while bouncing balls and spelling them with household goods that cost money and playing hangman. We have math that involves digging the Sunday paper out of the recycling bin at the street so that we can clip ads out with prices on them and arrange them in order of cost. It involves rote learning, worksheets, rote learning, and worksheets. It involves a completely disengaged TH who also keeps forgetting to take his snack from homeroom to language arts and doesn't eat his lunch at lunch because he "forgets."
TH came home two days ago and announced to me that if he were teaching third grade, he'd use things from "the real world" because, he asserted, what they're studying now never has anything to do with the real world. He wants to learn about cells and plants and animals and berries, he said. If he were teaching, he said, he'd do math through these real-world things, do vocabulary related to them, do social studies related to them. He actually described an entire unit focused on a geographical area with associated flora and fauna, using math and vocabulary related to it, incorporating its history and "famous people." Yes, he devised a comprehensive teaching unit in ways that only the cleverest teachers can manage.
And it happens to be exactly the way I'd teach this particular child of mine if I were his teacher. Which takes me to the thing that has been roiling around my intuition, alerting my mom radar, leading me to ask myself with unassailable logic: Is TH in the learning environment that is best for him? Would homeschooling be better? I've asked it before, last year, when things hit a nadir. We upped throttle at the last minute, and he ended up having a great year. But my intrusive and annoying intuition is not feeling so sanguine this time.
My reinforcements arrived last night when TH came to me for the fifth night in a row after lights out--a sure sign that something is on his mind--and babbled aimlessly and anxiously for 30 minutes before I finally had to send him to bed. And as he said goodnight and started to turn away, there were tears in his eyes. From my child who almost never cries. He couldn't say why.
Crap. There's that stupid gut feeling again.
Saturday, September 12, 2009
The day after
I woke up on September 11, 2001, amazed at the time I read on the alarm clock. 9:39. I was amazed because we had a four-month-old, and I'd been up with him much of the night and fully expected to see him again long before 9:39. So, I got out of bed, wearing a white nursing nightie, and stumbled down our hallway, where I encountered Mr. DMFP. Just as I began to say, "Wow, you really let me sleep in," he said, "Planes have flown into some buildings in New York."
How he found out was by email. His company's main offices were in Manhattan. Mr. DMFP had opened his email that morning to read that the offices would be closed that day because of planes crashing into the twin towers.
The rest of the day was a surreal swirl of horror, collapsing buildings, a trip to my eerily quiet, empty college campus, usually teeming with the largest student body in the nation. I wrote a quiet, low-key note on the chalkboard: "BIO 309F will resume next week." I didn't really need to do that, as it turned out, because the campus had been placed on lockdown.
And then that night. We laid in bed. I remember the book I was reading, the page I started on that evening, the page I read again and again as I tried and tried to process the events of that day. One thing I knew was that the world in which our four-month-old son was growing up had just changed in huge and horrific ways.
When we were growing up, it was under the shadow of The Bomb. We worried every day that the Russians would blow us all to hell. We watched the TV movie, "The Day After," intended to be a realistic depiction of what would really happen if The Bomb came. I dreamt apocalyptic dreams of a post-nuclear wasteland, something that Cormac McCarthy brought in an uncannily accurate reflection of my psyche to The Road. What had Cormac McCarthy been doing there in my young adult head?
Then that Wall fell. It seemed at the time like an unpredictable, unlikely, dreamlike miracle, one that came too late for all of those people who were shot, in the back, desperately scrambling for a better life.
And now, people--brutal, murderous, sadistic, evil people--had no compunction about flying planeloads of innocents into buildings packed with innocents. Innocents like our son. Like Nazis, they'd kill someone like our son without blinking an eye.
With the weight of that day pressing on us, we wandered through the next day, eight years ago today, September 12. We watched 24-hour news, obsessively, watching the death counts as they changed, learning more and more horror stories, starting to hear about the courage of the passengers on flight 93, about phone calls they'd made to loved ones, having become aware of the evil that now flew their plane.
And that evening, again as we laid in bed, trying to read, while our baby--our firstborn--slept unknowing, trusting, innocent in his crib, I turned to Mr. DMFP and said, "I just wonder now if we should even try to bring anyone else into this world." We'd planned--with that blitheness of people who've never had to "try" for a pregnancy--we'd planned on having more, and soon; I wasn't getting any younger. "It just seems like it wouldn't even be right now to bring more people into a world like this." I spoke from fear, from sadness, from the weight of 24 hours of national horror.
Surprisingly, especially from a man who has always been ambivalent about the seriousness of bringing new life into the world, Mr. DMFP turned to me and said, "Yes. Let's have our babies." It was a small, brave, personal stand against the evil that had just poisoned everyone's hearts and minds.
Let's have our babies.
And we did. In fact, almost exactly a year later, on September 23, 2002, Dubya emerged, fat and on his due date after four hours of labor at home, pleased and trusting and innocent and hungry. Four years after that, on August 18, 2006, Little Da joined us. We strive to raise all three of our children to be brave, responsible, honest, caring, thoughtful people who will, in ways that may be big or may be small, make this world a better place. A place where good, in increments large and little, continues through the generations, where we face up to evil in our quotidian ways and keep on living our lives.
So, up yours, terrorists.
September 12, 2009
How he found out was by email. His company's main offices were in Manhattan. Mr. DMFP had opened his email that morning to read that the offices would be closed that day because of planes crashing into the twin towers.
The rest of the day was a surreal swirl of horror, collapsing buildings, a trip to my eerily quiet, empty college campus, usually teeming with the largest student body in the nation. I wrote a quiet, low-key note on the chalkboard: "BIO 309F will resume next week." I didn't really need to do that, as it turned out, because the campus had been placed on lockdown.
And then that night. We laid in bed. I remember the book I was reading, the page I started on that evening, the page I read again and again as I tried and tried to process the events of that day. One thing I knew was that the world in which our four-month-old son was growing up had just changed in huge and horrific ways.
When we were growing up, it was under the shadow of The Bomb. We worried every day that the Russians would blow us all to hell. We watched the TV movie, "The Day After," intended to be a realistic depiction of what would really happen if The Bomb came. I dreamt apocalyptic dreams of a post-nuclear wasteland, something that Cormac McCarthy brought in an uncannily accurate reflection of my psyche to The Road. What had Cormac McCarthy been doing there in my young adult head?
Then that Wall fell. It seemed at the time like an unpredictable, unlikely, dreamlike miracle, one that came too late for all of those people who were shot, in the back, desperately scrambling for a better life.
And now, people--brutal, murderous, sadistic, evil people--had no compunction about flying planeloads of innocents into buildings packed with innocents. Innocents like our son. Like Nazis, they'd kill someone like our son without blinking an eye.
With the weight of that day pressing on us, we wandered through the next day, eight years ago today, September 12. We watched 24-hour news, obsessively, watching the death counts as they changed, learning more and more horror stories, starting to hear about the courage of the passengers on flight 93, about phone calls they'd made to loved ones, having become aware of the evil that now flew their plane.
And that evening, again as we laid in bed, trying to read, while our baby--our firstborn--slept unknowing, trusting, innocent in his crib, I turned to Mr. DMFP and said, "I just wonder now if we should even try to bring anyone else into this world." We'd planned--with that blitheness of people who've never had to "try" for a pregnancy--we'd planned on having more, and soon; I wasn't getting any younger. "It just seems like it wouldn't even be right now to bring more people into a world like this." I spoke from fear, from sadness, from the weight of 24 hours of national horror.
Surprisingly, especially from a man who has always been ambivalent about the seriousness of bringing new life into the world, Mr. DMFP turned to me and said, "Yes. Let's have our babies." It was a small, brave, personal stand against the evil that had just poisoned everyone's hearts and minds.
Let's have our babies.
And we did. In fact, almost exactly a year later, on September 23, 2002, Dubya emerged, fat and on his due date after four hours of labor at home, pleased and trusting and innocent and hungry. Four years after that, on August 18, 2006, Little Da joined us. We strive to raise all three of our children to be brave, responsible, honest, caring, thoughtful people who will, in ways that may be big or may be small, make this world a better place. A place where good, in increments large and little, continues through the generations, where we face up to evil in our quotidian ways and keep on living our lives.
So, up yours, terrorists.
September 12, 2009
Thursday, September 10, 2009
Circle of Friends, redux, reduced
Today, I presented a truncated, free-flowing Circle of Friends to TH's classes. It's "classes" this year not because of grade-wide concerns but because he's in third grade: He's got separate groups for math, language arts, and homeroom. I went in with no notes, no slides, just me and a half-page explanatory letter for parents so that they'd know someone had taken over class time for 10 minutes that day to talk about autism and specifically about a student in the class. And no, there was no "opt-out" for this one, and I'm not even the president.
The upshot? I love these kids. They were so listening, so intuitive, so kind. Several were curious to know what behaviors would indicate that TH is anxious so that they could help him. The ones who'd been with him since kindergarten exhibited a knowledge about him that was almost as deep as our own--one little girl raised her hand and said, "TH starts making those faces when we're standing in line to go to recess. I think he does that because he's excited about recess." And she's right on the money with that. There were many similar insightful observations.
I started each talk by asking the kids about things that they find difficult to do. After a few of them gave input--some on target, some delightfully off-subject, rambling, and hilarious--I then asked them to interpret the face I was making, and presented them with the flattest affect I could conjure (which is pretty damned flat). They stared and said, "We can't tell!" Then, I glared--"You're mad!"--and then I smiled--"You're happy!"--and then we talked about how faces to TH look a lot like that first one, how difficult it is for him to tell what a face is saying to him, even though for many of them, it is easy. I think they Got It. A few even said that they themselves have trouble with that.
We also talked about autism, how it happens--"You were made before you were born with brown eyes, and TH was made with blue eyes. TH's brain was built differently from yours before he was born, too." We talked about how difficulties can be overcome--not just for someone with autism, but for anyone as they get older, learn, adapt. I invited the children to contribute their own experiences with improving, and they did so excitedly, if sometimes not entirely on point. I love this age group.
After all of this exchange, one child--a child who last year contributed in a useful and lasting way during our Circle of Friends presentation by voicing his negative experiences with TH and really listening to my suggestions about handling them--this child raised his hand and said, "I really like TH. He's a good friend to me and really nice to me." I almost died from a pleasantly broken heart right there in the middle of that language arts class. What a sweetie.
The real heartbreak of today came not from our discussions of TH, which were all positive, sharing, and understanding ("I like nature, too!" "I'm scared of crowds, too!" "I feel anxious, too!"), but from something that several children voiced. The question at hand was, "How would you feel if your parent came to your classroom to talk to the other kids about you?" I expected some "anxious" or "nervous," but instead I got two responses from kids who both said, "Happy." Why? Because that would mean that they would get to see that parent, a parent they otherwise, in their words, "never get to see" because of work demands. The next time Mr. DMFP starts maundering on about how he should have gone into something more high-powered, I'll remind him of this and of how he himself has commented on never really having his father around. No circle of friends is going to be able to replace that sense of longing.
The upshot? I love these kids. They were so listening, so intuitive, so kind. Several were curious to know what behaviors would indicate that TH is anxious so that they could help him. The ones who'd been with him since kindergarten exhibited a knowledge about him that was almost as deep as our own--one little girl raised her hand and said, "TH starts making those faces when we're standing in line to go to recess. I think he does that because he's excited about recess." And she's right on the money with that. There were many similar insightful observations.
I started each talk by asking the kids about things that they find difficult to do. After a few of them gave input--some on target, some delightfully off-subject, rambling, and hilarious--I then asked them to interpret the face I was making, and presented them with the flattest affect I could conjure (which is pretty damned flat). They stared and said, "We can't tell!" Then, I glared--"You're mad!"--and then I smiled--"You're happy!"--and then we talked about how faces to TH look a lot like that first one, how difficult it is for him to tell what a face is saying to him, even though for many of them, it is easy. I think they Got It. A few even said that they themselves have trouble with that.
We also talked about autism, how it happens--"You were made before you were born with brown eyes, and TH was made with blue eyes. TH's brain was built differently from yours before he was born, too." We talked about how difficulties can be overcome--not just for someone with autism, but for anyone as they get older, learn, adapt. I invited the children to contribute their own experiences with improving, and they did so excitedly, if sometimes not entirely on point. I love this age group.
After all of this exchange, one child--a child who last year contributed in a useful and lasting way during our Circle of Friends presentation by voicing his negative experiences with TH and really listening to my suggestions about handling them--this child raised his hand and said, "I really like TH. He's a good friend to me and really nice to me." I almost died from a pleasantly broken heart right there in the middle of that language arts class. What a sweetie.
The real heartbreak of today came not from our discussions of TH, which were all positive, sharing, and understanding ("I like nature, too!" "I'm scared of crowds, too!" "I feel anxious, too!"), but from something that several children voiced. The question at hand was, "How would you feel if your parent came to your classroom to talk to the other kids about you?" I expected some "anxious" or "nervous," but instead I got two responses from kids who both said, "Happy." Why? Because that would mean that they would get to see that parent, a parent they otherwise, in their words, "never get to see" because of work demands. The next time Mr. DMFP starts maundering on about how he should have gone into something more high-powered, I'll remind him of this and of how he himself has commented on never really having his father around. No circle of friends is going to be able to replace that sense of longing.
Friday, September 4, 2009
Vive la difference: Case studies
May as well resign ourselves to living with it because it's probably going to last for awhile.
Last night, Dubya had homework. He's a great big first grader now, so he has reading homework every night and math on Thursdays. Last night was our first Thursday math homework. And I experienced a striking contrast that left me more aware of how the other half or 75% or 90% or whatever it is lives. In other words, I experienced what it's like to do homework with a child who does not have learning differences. Some people think that to really understand what it's like to have a child with "special needs," you have to have a child with special needs. My special needs son came first, so I'm discovering now what it's like to have a child whose special needs don't include academic supports. Apparently, one could conceivably cook dinner while one's child does homework under these conditions.
We learned on back-to-school night what fun, great, wonderful things our school does in third grade. And it does look fun: lots of science stuff, dioramas, hands-on activities, projects. But mostly what I sat there thinking was, I sure do have a lot of homework coming up this year. And that's not because I do TH's homework for him. It's because at home, I'm his aide, his support, his cattle prod, his Dickensian schoolmaster, his amanuensis, his timekeeper. This is a child for whom "project" is a concept light years away. Project completion? On his own? Maybe if he were inspired by the opportunity to film Pokemon cards. Otherwise, we're talking a universe away, somewhere in an alternate universe where he'll also stop pulling his white socks full length up to his calves every morning, requiring one of his parents to perform a fashion fix on what we've started to call his "MIT socks." Then, we remind him to zip his pants.
Onward to a Variation in Homework Experiences: A Case Study by Daisymayfattypants
Case description 1, Dubya: Mother provided participant a nicely sharpened pencil, sat him down at the table with his two worksheets, read the brief directions, and walked away. Participant, age almost seven, neatly and tidily completed the first worksheet--counting by twos--with all numbers formed in the correct orientation and order, all correctly answered, neat and tidy. The child also used a classic tripod grasp in forming his tidy letters. The second page was slightly more challenging and involved a bit of multiplication and division, for which the child expressed great enthusiasm. Within five minutes, the participant had completed the assignment, placing the finished work in his backpack and returning the pencil to its original receptacle, which appeared to be an enormous catch-all basket full of unidentified miscellany.
Case description 2, TH: Mother provided participant a nicely sharpened pencil and sat him down at the table with his single worksheet, instructing participant to read the directions and complete what appeared to be a brief and review-level assignment. After a significant interval [data not shown] in which the participant, age 8 years, expressed in English and other utterances serious reservations about the work, executed numerous erasures, and required one pencil-sharpening break, the homework assignment remained uncompleted. Further instruction by the mother, complete with various applicable examples both gesticulated and written, did not produce a final outcome. Ultimately, the work was completed, although generally illegible, executed throughout with a fisted grasp, and littered with erasures. Both parties conceded partial defeat, with the mother spending the next 15 minutes guiding the participant through the three steps involved in clean up.
Conclusions: Yes, homework without learning differences is undoubtedly a different experience, with a P < 0.000001 (based on comparison of two data sets over eight consecutive trials; student's t tests).
So, now I kind of know how that feels. We'll just continue working on these things on a case by case basis. And vive la difference!
Last night, Dubya had homework. He's a great big first grader now, so he has reading homework every night and math on Thursdays. Last night was our first Thursday math homework. And I experienced a striking contrast that left me more aware of how the other half or 75% or 90% or whatever it is lives. In other words, I experienced what it's like to do homework with a child who does not have learning differences. Some people think that to really understand what it's like to have a child with "special needs," you have to have a child with special needs. My special needs son came first, so I'm discovering now what it's like to have a child whose special needs don't include academic supports. Apparently, one could conceivably cook dinner while one's child does homework under these conditions.
We learned on back-to-school night what fun, great, wonderful things our school does in third grade. And it does look fun: lots of science stuff, dioramas, hands-on activities, projects. But mostly what I sat there thinking was, I sure do have a lot of homework coming up this year. And that's not because I do TH's homework for him. It's because at home, I'm his aide, his support, his cattle prod, his Dickensian schoolmaster, his amanuensis, his timekeeper. This is a child for whom "project" is a concept light years away. Project completion? On his own? Maybe if he were inspired by the opportunity to film Pokemon cards. Otherwise, we're talking a universe away, somewhere in an alternate universe where he'll also stop pulling his white socks full length up to his calves every morning, requiring one of his parents to perform a fashion fix on what we've started to call his "MIT socks." Then, we remind him to zip his pants.
Onward to a Variation in Homework Experiences: A Case Study by Daisymayfattypants
Case description 1, Dubya: Mother provided participant a nicely sharpened pencil, sat him down at the table with his two worksheets, read the brief directions, and walked away. Participant, age almost seven, neatly and tidily completed the first worksheet--counting by twos--with all numbers formed in the correct orientation and order, all correctly answered, neat and tidy. The child also used a classic tripod grasp in forming his tidy letters. The second page was slightly more challenging and involved a bit of multiplication and division, for which the child expressed great enthusiasm. Within five minutes, the participant had completed the assignment, placing the finished work in his backpack and returning the pencil to its original receptacle, which appeared to be an enormous catch-all basket full of unidentified miscellany.
Case description 2, TH: Mother provided participant a nicely sharpened pencil and sat him down at the table with his single worksheet, instructing participant to read the directions and complete what appeared to be a brief and review-level assignment. After a significant interval [data not shown] in which the participant, age 8 years, expressed in English and other utterances serious reservations about the work, executed numerous erasures, and required one pencil-sharpening break, the homework assignment remained uncompleted. Further instruction by the mother, complete with various applicable examples both gesticulated and written, did not produce a final outcome. Ultimately, the work was completed, although generally illegible, executed throughout with a fisted grasp, and littered with erasures. Both parties conceded partial defeat, with the mother spending the next 15 minutes guiding the participant through the three steps involved in clean up.
Conclusions: Yes, homework without learning differences is undoubtedly a different experience, with a P < 0.000001 (based on comparison of two data sets over eight consecutive trials; student's t tests).
So, now I kind of know how that feels. We'll just continue working on these things on a case by case basis. And vive la difference!
Thursday, September 3, 2009
Parallel play
Mr. DMFP just forwarded me a link to a piece in the New York Times about Tim Page, who just authored an autobiography, Parallel Play: Growing up with Undiagnosed Asperger's (I refuse, refuse I say!, to bend to this newfangled trend of putting book titles in quotation marks. Italics for me, thank you).
You might think that we read this and mutually discussed similarities between this man and our oldest son, or talked about how great it would be if our son grew up to translate his obsessions into Pulitzer Prize-winning work. But no, that's not what we did.
I read it and came across this quote from Mr. Page: "it would be easier for me to improvise an epic poem before a sellout crowd at Madison Square Garden than to approach an attractive stranger across the room and strike up a conversation." Immediately upon reading that, I IM'd Mr. DMFP that this quote sounded just like him. I'm always afraid that if I kick the bucket, the man will stay alone forever, just for this very reason. He IM'd me back that he'd thought exactly the same thing.
And then there was the quote that cut straight to my own confusions with life: "Tirelessly logical, sometimes agonizingly so, he lives life in an extra dimension...."
I've always wondered, is it a problem with "theory of the mind"? Why does it always seem to me like people are so emotional when I don't feel that way? Why can't people just be practical, dammit, logical, see the clear path to rationality? Frankly, it is agonizing, irritating, confusing, and I've always felt like I just don't get it, whatever it is. That doesn't mean I don't have real friends whose real emotions I can't understand; I do. It's the irrational emotions that confuse me.
Then there's this: "But for him thinking inside the box is at best a mechanical exercise based on mimicry; at worst it’s an impossibility."
Mr. DMFP and I both identify with that, me more so, I think. Just the other day, I learned a new social skill, having to do with a reciprocal behavior that I saw someone exhibit. And to this day, if I have a visitor to my home--often someone I know well, like my in-laws--I'll become so distracted trying really hard with my small talk that I'll forget the other things that I've learned I'm supposed to do, like offering them a seat, or something to drink. Thus, the poor things might stand there for minutes, thirsty and yearning for a chair while their dullard daughter-in-law tries awkwardly to engage in chat.
And we love the title of the book. As I've described here before, Mr. DMFP and I spend most evenings in parallel play, together, quiet, each doing our own thing. Even as we eat at the same table, we do so with our respective reading material. Yes, we talk, often. We laugh. We engage and we enjoy one another's company. But we're also in many ways like two-year-olds who never quite mastered the social-engagement aspects of play. We just move together through life, side by side, enjoying ourselves with each other. And we like it that way just fine.
And yes, we're going to be buying this book. Perhaps we'll need two copies, given our tendencies to living in parallel--in more ways than one.
You might think that we read this and mutually discussed similarities between this man and our oldest son, or talked about how great it would be if our son grew up to translate his obsessions into Pulitzer Prize-winning work. But no, that's not what we did.
I read it and came across this quote from Mr. Page: "it would be easier for me to improvise an epic poem before a sellout crowd at Madison Square Garden than to approach an attractive stranger across the room and strike up a conversation." Immediately upon reading that, I IM'd Mr. DMFP that this quote sounded just like him. I'm always afraid that if I kick the bucket, the man will stay alone forever, just for this very reason. He IM'd me back that he'd thought exactly the same thing.
And then there was the quote that cut straight to my own confusions with life: "Tirelessly logical, sometimes agonizingly so, he lives life in an extra dimension...."
I've always wondered, is it a problem with "theory of the mind"? Why does it always seem to me like people are so emotional when I don't feel that way? Why can't people just be practical, dammit, logical, see the clear path to rationality? Frankly, it is agonizing, irritating, confusing, and I've always felt like I just don't get it, whatever it is. That doesn't mean I don't have real friends whose real emotions I can't understand; I do. It's the irrational emotions that confuse me.
Then there's this: "But for him thinking inside the box is at best a mechanical exercise based on mimicry; at worst it’s an impossibility."
Mr. DMFP and I both identify with that, me more so, I think. Just the other day, I learned a new social skill, having to do with a reciprocal behavior that I saw someone exhibit. And to this day, if I have a visitor to my home--often someone I know well, like my in-laws--I'll become so distracted trying really hard with my small talk that I'll forget the other things that I've learned I'm supposed to do, like offering them a seat, or something to drink. Thus, the poor things might stand there for minutes, thirsty and yearning for a chair while their dullard daughter-in-law tries awkwardly to engage in chat.
And we love the title of the book. As I've described here before, Mr. DMFP and I spend most evenings in parallel play, together, quiet, each doing our own thing. Even as we eat at the same table, we do so with our respective reading material. Yes, we talk, often. We laugh. We engage and we enjoy one another's company. But we're also in many ways like two-year-olds who never quite mastered the social-engagement aspects of play. We just move together through life, side by side, enjoying ourselves with each other. And we like it that way just fine.
And yes, we're going to be buying this book. Perhaps we'll need two copies, given our tendencies to living in parallel--in more ways than one.
Wednesday, September 2, 2009
Why we like our school
1. I got to talk to TH's teacher about the humming today. It went really well. She had already realized that TH will do best with a visual, rather than a verbal, reminder about his humming, and he has a little sign on his desk. If he's humming and it's disturbing others, she will just be able to quietly point to the sign, and he'll get the message. While we understand that humming is a stim, as I said before, we really want TH to try to have some realization of when his stims may intrude on other people's ability to, say, concentrate in class and to try to modify his expression accordingly. One of the teachers even asked if there was another, quieter stim to do so that he could still stim when he needs to. Really. These folks get it.
2. There is some confusion among the kids about what they heard during the autism discussion in class. While they came away with the idea that autism could be cured and some other misconstructions, the parent appears really to have said that there is no cure. Yes, this is the kind of school where I can have this concern, and the teachers will be aware and address it for me. The take-home lesson here is simply that when we're presenting information, we need to be careful about what we present. I myself will be keeping this in mind when we have our chat with TH's classes--he's in homeroom, math, language arts with three different sets of kids--and I will strive to be as basic and accurate as I can be. It won't be a full-blown circle of friends, but a more informational session with a letter home. TH and Mr. DMFP both lean to this more low-key approach this year, and it feels right for me.
I got the chance this morning to explain a few of TH's differences to his teachers. For example, he can take a spelling test and do fine reproducing the correct spelling of most words, singly. But it he's asked to use those same words in a sentence or story...well, spelling, spacing, capitalization, punctuation...it all goes out the window because he simply cannot at this time coordinate all of that. They were all over it, immediately suggesting accommodations for him, but I actually asked that we try things the "regular" way at first, just to see how he does. Then, accommodations can grow from what they observe.
The way the teachers reacted to every single thing we discussed just reminds me all over again of the fabulousness of this school. Professional, caring, interested, engaged, creative, at work at the ungodly hour of 7:45 to meet with me, smiling, cheerful, not remotely burned out...I've been a teacher, and I know how significant every single one of these characteristics is. Each of the teachers I met this morning manifested them all. Moving to where we live, having TH start out his career at this school...we couldn't have done better by our son if we'd planned it.
2. There is some confusion among the kids about what they heard during the autism discussion in class. While they came away with the idea that autism could be cured and some other misconstructions, the parent appears really to have said that there is no cure. Yes, this is the kind of school where I can have this concern, and the teachers will be aware and address it for me. The take-home lesson here is simply that when we're presenting information, we need to be careful about what we present. I myself will be keeping this in mind when we have our chat with TH's classes--he's in homeroom, math, language arts with three different sets of kids--and I will strive to be as basic and accurate as I can be. It won't be a full-blown circle of friends, but a more informational session with a letter home. TH and Mr. DMFP both lean to this more low-key approach this year, and it feels right for me.
I got the chance this morning to explain a few of TH's differences to his teachers. For example, he can take a spelling test and do fine reproducing the correct spelling of most words, singly. But it he's asked to use those same words in a sentence or story...well, spelling, spacing, capitalization, punctuation...it all goes out the window because he simply cannot at this time coordinate all of that. They were all over it, immediately suggesting accommodations for him, but I actually asked that we try things the "regular" way at first, just to see how he does. Then, accommodations can grow from what they observe.
The way the teachers reacted to every single thing we discussed just reminds me all over again of the fabulousness of this school. Professional, caring, interested, engaged, creative, at work at the ungodly hour of 7:45 to meet with me, smiling, cheerful, not remotely burned out...I've been a teacher, and I know how significant every single one of these characteristics is. Each of the teachers I met this morning manifested them all. Moving to where we live, having TH start out his career at this school...we couldn't have done better by our son if we'd planned it.
Tuesday, September 1, 2009
Hmm. No hum?
Yesterday, TH got into the car after school and announced that he'd gotten "in trouble" twice that day. The first instance was his being relieved of his scissors during some project because he was using them to cut at his pencil, rather than whatever was really the target cuttee. According to his (likely abbreviated) report, the teacher summarily took the scissors from him and told him he would not be cutting anything that day.
And then, it turns out that one of his teachers does not like humming. As anyone who reads here knows, TH is autistic. As anyone who knows autistic kids knows, humming is a big thing. BIG THING. TH hums a lot. He hums to self regulate. He hums because he's happy. He hums...well, to express a lot of different things. The thing is, the boy hums. A lot.
Apparently, he's been called out three times now for humming, and the third time, the teacher told him that if he did it again, she was going to sign his "Pride Folder," which is like sending a note home to the parents saying, "Your child is misbehaving a bit."
I understand that humming is distracting. I also know that humming ain't the only distracting, self-regulating sound that goes on in classrooms at TH's school. There are many many more distractions that I've witnessed, some of which kind of bothered even me, She Who Understands Tics and Self-regulatory Behaviors.
And I admit that my first (internal) response to hearing, "She's going to sign my Pride Folder," was "whoopteedoo." I'm just sort of knee-jerkily sassy that way. But I also tend to introspection, and after a bit of that, I asked myself: If my son were not autistic, if humming weren't to him what breathing is to some people, what would my response be? Of course, it would be, "Well, you'd better bloody well stop humming."
But, my son is autistic. And this episode leads me navigating a maze of confusing questions. Do we use this as an opportunity to try to work with TH to control his self-regulatory behaviors at inappropriate moments, which we already do? Is the classroom an inappropriate moment? Does this teacher "get" autistic kids? If she does, is this her way of working to help him control his self-regulatory expression? Or is she just...ahem...aurally sensitive?
Mr. DMFP and I discussed it all. We ended by telling TH that he needs to try not to hum in class. Obviously, we came down on the side of, "You need to try to do what your teacher asks you to do." We've always said that his autism is no excuse, it's just a difference. I guess now we're getting to test the courage of that conviction in actual application. We hadn't, however, anticipated that the test of our convictions would come to us via a hum, rather than some sort of roar.
And then, it turns out that one of his teachers does not like humming. As anyone who reads here knows, TH is autistic. As anyone who knows autistic kids knows, humming is a big thing. BIG THING. TH hums a lot. He hums to self regulate. He hums because he's happy. He hums...well, to express a lot of different things. The thing is, the boy hums. A lot.
Apparently, he's been called out three times now for humming, and the third time, the teacher told him that if he did it again, she was going to sign his "Pride Folder," which is like sending a note home to the parents saying, "Your child is misbehaving a bit."
I understand that humming is distracting. I also know that humming ain't the only distracting, self-regulating sound that goes on in classrooms at TH's school. There are many many more distractions that I've witnessed, some of which kind of bothered even me, She Who Understands Tics and Self-regulatory Behaviors.
And I admit that my first (internal) response to hearing, "She's going to sign my Pride Folder," was "whoopteedoo." I'm just sort of knee-jerkily sassy that way. But I also tend to introspection, and after a bit of that, I asked myself: If my son were not autistic, if humming weren't to him what breathing is to some people, what would my response be? Of course, it would be, "Well, you'd better bloody well stop humming."
But, my son is autistic. And this episode leads me navigating a maze of confusing questions. Do we use this as an opportunity to try to work with TH to control his self-regulatory behaviors at inappropriate moments, which we already do? Is the classroom an inappropriate moment? Does this teacher "get" autistic kids? If she does, is this her way of working to help him control his self-regulatory expression? Or is she just...ahem...aurally sensitive?
Mr. DMFP and I discussed it all. We ended by telling TH that he needs to try not to hum in class. Obviously, we came down on the side of, "You need to try to do what your teacher asks you to do." We've always said that his autism is no excuse, it's just a difference. I guess now we're getting to test the courage of that conviction in actual application. We hadn't, however, anticipated that the test of our convictions would come to us via a hum, rather than some sort of roar.
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