Monday, September 30, 2002
September 30-October 4, 2002
SEPTEMBER 30, 2002
I always make a big effort to understand the stresses underlying my children’s behavior, and to deal with it accordingly. For my son especially, behavior is communication, and I try to always get the message. Many, many times I hand out “get out of bad behavior free” cards when it’s clear that factors outside the child’s control are making it impossible to get and keep a grip. So why can’t I ever get one of those cards myself?
Last week, I had terrible hayfever problems. If I didn’t take medication, I was constantly sneezing. If I did, I fell asleep where I stood. The inability to take a breath without serial sneezes took a toll on my temper, and I’ll admit, I was impatient with all around me. Now, if this was my son, wracked with sneezes, I would forgive him any amount of misbehavior. But does he return the favor? No! The more impatient I get, the more in need of patience is he; the shorter-tempered I become, the more temper-trying he gets. Then, of course, I have his meltdowns on my head.
I know, really, I do know and understand and accept that my son needs emotional equilibrium from me in order to keep his own. And most of the time, I am up to that task. Most of the time, it makes me feel good to be the one who sets the tone for our family life. But when I don’t feel good, it’s a heck of a burden. Certainly, nothing to sneeze at.
+ + +
OCTOBER 1, 2002
A fairly amazing thing happened last night when my daughter and I finished her nightly homework assignment of free reading: She liked it. She liked the first chapter of a new book so much she thought she might like the whole book, and she was interested to find out what was going to happen next. Not so much that she wanted to read the next chapter right then, but it's a start.
Her teacher this year in 5th grade is making these reading assignments in the hope of doing just that -- finding the book that will make a kid say, "Okay, maybe this reading thing isn't so bad after all." At least so far, this has been at the expense of a big comprehension push on the stories in the reading textbook, which is fine by me. My daughter is on her third novel since the start of the school year, and that's a bigger achievement than getting a good grade on an essay test.
Of course, by "novel," I'm not talking "Harry Potter" here. Her teacher steered her toward a couple of short books with short chapters and plenty of pictures, and seems to have hit it just right. I'm trying not to hope for too much, but it sure would be nice to see my girl get excited about reading -- or at least not face reading with unmitigated dread. We'll take it one chapter at a time.
+ + +
OCTOBER 2, 2002
My son is in love with one of his summer-camp counselors, which would be cute if she wasn't a married woman with children of her own, and if he wasn't so entirely obsessed. He has her picture by his bed and talks to it regularly, he has an invisible version of her who lives in his room, he insists on hanging around outside of school until he sees her arrive to drop off her son, he wants to know if she'll still be alive when he's a grown-up, and if he can marry her then. If he had a car, he'd be a stalker. ("And knowing him, it would be a very nice car!" said his love interest when I mentioned that to her; so at least he's got a girl with a sense of humor.)
It's a little creepy, but really, I guess I should be glad that my kids are targeting older, unavailable members of the opposite sex for their crushes instead of either harassing or hooking up with classmates. Obsessive attractions with classmates could be hazardous, however they play out; while the likelihood of my son getting into any trouble with that nice mom in the red Jeep, or my daughter with Regis Philbin (her particular crush object), is pretty slight. Still, I'll be glad when my guy stops bellowing the name of his beloved across the schoolyard every morning. Last thing I need is her son challenging him to a duel.
+ + +
OCTOBER 4, 2002
I went to a class parents’ meeting at my kids’ school this morning. It’s embarrassing to admit how much I live for stuff like this. Even though class parenting mostly just involves calling people at 6 a.m. to ruin their day with the news that the schools are closed, I love having any kind of role in my children’s school experience. I would hang around the school all day if they let me. I would even clean the classrooms (but don’t tell the custodians that, okay?) As it is, I count the days to the next meeting or the next library session or the next teacher conference. It’s true, I’m obsessed.
So it’s hard for me to understand why some parents might not be. You only have to take a look around half-empty classes at Back to School Night to know that some folks are, to put it nicely, disengaged from their children’s school experience. I mean, Back to School Night, people! They let you in the school! You get to sit at your child’s desk! You get to find out if their teacher speaks clearly, looks nice, smells bad. How can you resist? I suppose there are people who have conflicts -- work, child care, transportation -- that keep them from being able to show up. But, you know, if they asked me nice, I’d go to their kids’ classroom, too. I love this stuff!
Monday, September 23, 2002
September 23-27, 2002
SEPTEMBER 23, 2002
We had some excitement here on Saturday in the form of an ambulance, a police car, two paramedics and a policeman. The occasion of their visit was not, thankfully, a problem with my kids but with their grandmother, who lives with us. She was sick enough that her doctor had ordered me to call 911, but not so sick as to be in serious danger. So the whole spectacle of emergency vehicles coming to our home was more thrilling than chilling.
The men who came to our house were friendly, professional and efficient, but what impressed me most was how kind and understanding they were to my son, who was jumping around so excitedly he could easily have just annoyed them. Instead, one of the paramedics asked me for my son's name, and then called to him and asked him to go wait for the police car and show the policeman where to come. When the officer did arrive, he cheerfully answered my boy’s questions about the police car and allowed his keys to be examined. When they left, the ambulance driver gave the siren a blast at the kids’ request, and then they were gone, leaving my son with an exciting story to tell anyone who would listen: "Two Fords came to our house, an ambulance and a police car!"
Odd for a visit from emergency personnel to be, in the end, a good experience. (Not so good for Grandma, of course, but she is doing better now.)
+ + +
SEPTEMBER 24, 2002
I was sorry to hear the news that one of the few magazines I take the time to read regularly, "Rosie," is soon to be no more. Its namesake has apparently tired of fighting with editorial types to see her vision realized -- and having worked for a women's magazine and been an editorial type myself, I don't blame her one bit -- and is bowing out of her publication as she did her TV show. Some will take this as yet another example of the foolishness of depending on celebrities, and they may be right. I think it's yet another example of the impossibility of making real, radical changes in an established magazine format, and I may be right, too.
At any rate, I'm sad to see it go. Although unable to break out of the fashion-makeup-recipes-decorating women's magazine mold, I thought "Rosie" did some interesting new things with those old standbys. The appearance of stars of varying wattages in its pages was similarly unavoidable, but again, the celebs were employed creatively, and if that didn't always work (as it turns out, I don't really want to take parenting advice from actresses), I appreciated the effort. I thought the writing was generally good and refreshingly opinionated, a departure from the even-handedness most women's magazines apply so heavily that no conclusions can ever be drawn.
Most of all, though, I liked "Rosie" because it felt like a parenting magazine for *me* -- for a middle-aged mom with kids adopted well past infancy, who couldn't care less about diapers and breast-feeding and playgroup politics but is very interested in articles about adoption and kids with special needs and social issues affecting children. If the publishers of "Rosie" are going to turn it into yet another magazine (it was originally "McCall's"), I hope they'll keep that slant. Probably about as much chance of that, though, as of the magazine being rechristined "Caroline Rhea."
+ + +
SEPTEMBER 25, 2002
The recent story of a mom who was caught on a parking lot security camera beating her daughter has given me chills, but not for the reasons it should. Of course, on some level, I'm appalled that a mother would treat her child that way, and glad for the child to be brought to safety and the parent to justice. But at the same time -- man, would *you* like your worst parenting moments to be caught on tape and broadcast on the TV news? Without for a moment condoning child-beating in any venue whatsoever, I think I can say that the notion of security people scanning video screens looking not just for car thieves and muggers but for parents behaving badly makes me want very much to never leave the house. Anyone else getting the heebie-jeebies?
I guess it's true these days that security cameras are always with us, in the bank, in the convenience store, in the parking lot, in the dressing room. They're there when we drop embarrassing personal items into our shopping basket, they're there when we try on hideously poor-fitting clothing, they're there when we pause by a shiny piece of reflective metal to check our hair, they're there when we give the car next to us a door ding and then try to pretend we didn't, they're there when we lose our temper with a cashier or a spouse or a child. Most of the time we allow ourselves to forget that we're being watched; but stories like the one about the parking-lot mom make me remember, all too clearly. And personally, I'm not so ready for my close-up.
+ + +
SEPTEMBER 27, 2002
Last night was "Back to School" night at my kids' school, and I'm feeling cautiously optimistic. The new superintendant of our district, who happens to have kids at our school, made a speech in which he correctly identified the problems the district is facing, including my pet peeves of poor communication and lack of thoughtful long-range planning. Of course, as many a politician has discovered, there's a large and scary space between identifying problems and actually doing something about them. But identifying is good.
I was happy to see that my son's classroom was arranged appropriately for his particular special needs, and that the teacher was doing things like starting the morning with exercises and giving rewards throughout the day. His textbooks were at the right level and all the adults in the room seem pleased with him (and there are a *lot* of adults in the room -- a teacher, a classroom aide and two one-on-one aides vs. six kids). So far, so good, I guess.
I'd already been to my daughter's classroom and met her teacher, but it was nice to see where her desk was and notice the folder with two A tests on top of it. The year's starting out well. But we'll see. "Cautious" is about as high as my optimism meter goes these days.
Monday, September 16, 2002
September 16-20, 2002
SEPTEMBER 16, 2002
My son is fascinated with the idea that the MRI he had on Thursday took pictures of his brain. He's sure that when we see the doctor today, she's going to give him some snapshots that he can take to school and show around. He's been promising people that they'll be able to take a look at his brain soon.
He'll probably be disappointed when he actually sees what the camera took, if the doctor even has the results there to show. Clearly, he's expecting something along the lines of a nice little brain sitting on a tabletop, posing for Polaroids. His first words to me upon waking up were, "Where's my brain?" Although I tried to explain how the camera takes its pictures of the brain through skin and bone, I think he's still pretty sure we removed it for its screen test.
As for me, I know the MRI results don't look like anything a 9-year-old would consider to be a brain photo op, but my expectations are probably pretty unrealistic, too. In my dreams, those scans will unlock some secrets of my boy's lobes, illuminate his strengths and weaknesses, suggest ways to help or hinder. And of course, I'm hoping that those indications will match the ones I've cooked up in my own personal brain cells. Whether they'll answer any questions at all, much less the way I want, is for us to find out this morning at 10 a.m. I hope useful information isn't as unlikely as 8x10 glossies.
+ + +
SEPTEMBER 17, 2002
Well, the bad news is that my son really did have a seizure last week. The abnormal spikes on the EEG backed up with the inability to move his left arm and leg that I reported were enough to convince the doctor that he'd had one, and what I saw was the aftermath. Since this is only the second seizure in the eight years he's been with us, the doctor's advice was not to panic, but just to keep a closer eye on him. Hard to imagine we could watch him any closer than we already do, but I don't mind trying.
The good news, if you can call it that, is that I got a little validation for my observations. I was pretty sure that the EEG would show nothing, and I would be left with no relief for the vague feelings of guilt over making a big fuss over something that might have been nothing. Now I know that it was something after all. It's nice, once in a while, to know you were right.
That small feeling of triumph wasn't quite drowned out by the way my son behaved at the doctor's office, although he sure tried. What is it about doctors that make kids bring out their most extreme behavior? My son is never more wild than when he's being examined, and my daughter is never more shy and inarticulate. It makes me want to place secret cameras all around our home and school and compile videotapes of my kids being their funny, ineractive, wonderful selves. Then maybe I could leave the kids at home for the exams entirely.
+ + +
SEPTEMBER 18, 2002
So a new TV season is beginning yet again, and again I'll probably miss most of it. It's hard to watch TV before my daughter and son go to bed, because they've got our two sets locked onto the Disney Channel and the Food Network, respectively; and it's hard to watch it after they go to bed, because I tend to fall asleep the moment I sit down. I have a couple of old favorite shows I make time for, but they're getting fewer and fewer as my stamina decreases and cancellations increase (okay, so I'm still not entirely over the fact that "Once and Again" got the hook). There's not much this year that looks so wondrous as to remake my schedule of kids and sleep.
The one show I did set my clock for was Bonnie Hunt's new sit-com, called "Bonnie" or "Bonnie Hunt" or "The Bonnie Hunt Show" or something original like that. I'm a big enough fan of the actress that I'm putting my self-imposed ABC boycott (see "Once and Again," above) on hold for half an hour on Tuesdays to see if she can survive on the "Now You See It, Now You Don't" network. I was even able to convince my daughter to turn off Disney's other channel long enough to watch it with me, since she's seen "Return to Me" with me a dozen times and was up for watching "that blond lady" in something else.
Turns out a large slice of the cast of "Return to Me" is in the sit-com with her, and it was fun for my daughter to see all those actors in new roles (and confusing, since she hasn't completely grasped the fact that the characters in a show and the actors who play them are two separate entities, and I know she was secretly wondering why Charlie the Veterinarian and the waitress and the "water lady" were all doing different jobs and wearing different hairstyles). She liked it all enough to watch it again next week, and so did I. Any family show that can make my family seem calm and organized by comparison is going to keep me coming back.
+ + +
SEPTEMBER 19, 2002
Lovely news this morning from European researchers, who report that the germs in dust actually protect kids from developing hay fever and asthma. Don't you love it? All of us slovenly housekeepers have been magically transformed into health-minded moms, just like that. Put down the feather duster, girls, and have another cup of coffee.
I'd be feeling really good about this news except that, alas, my mother did keep a dust-free house, and now I am beset by horrible hay fever. Clearly, Mom did not pass the Need to Clean down to me, and so I may be able to keep the Need to Sneeze 10 Times in a Row from my own kids. The Need to be Lazy, though ... ah, it may be too late for that.
+ + +
SEPTEMBER 20, 2002
My son put himself to bed last night. That's a remarkable occurrence, because we're talking about a boy who usually has to be lassoed, wrestled, and forceably restrained to get him under the covers. But last night, Mama and Papa both fell asleep themselves well before kiddie bedtime -- me, because of an allergy medication that was not kidding when it said it would make you drowsy, and my husband, because, well, because falling asleep in front of the television is what he does -- and the little ones were left to fend for themselves. Our daughter used that freedom to watch a Disney Channel movie all the way to the end, then sit in her room listening to music and combing her hair and waiting for someone to stir. But our son, we found in his bed, all tucked in and sound asleep.
Now, of course, the system's not perfect. He was tucked in with the blanket under his chin on a warm night, and so was covered with sweat. And he hadn't gone to the bathroom pre-tuck-in, so we had to wake him up and go through the whole bedtime routine anyway. And of course, it wouldn't have hurt either of these young people to just GO AHEAD AND WAKE US UP when bedtime came and went. But if we can refine things a little, get the little guy to remember his pre-bed bathroom trip and the big girl to stop combing her hair and go to sleep, maybe we could just go ahead and stop pretending and set the adult bedtime in our house a half-hour or so earlier than the children's bedtime. Goodness knows we're the ones who are really tired at the end of the day.
My son is fascinated with the idea that the MRI he had on Thursday took pictures of his brain. He's sure that when we see the doctor today, she's going to give him some snapshots that he can take to school and show around. He's been promising people that they'll be able to take a look at his brain soon.
He'll probably be disappointed when he actually sees what the camera took, if the doctor even has the results there to show. Clearly, he's expecting something along the lines of a nice little brain sitting on a tabletop, posing for Polaroids. His first words to me upon waking up were, "Where's my brain?" Although I tried to explain how the camera takes its pictures of the brain through skin and bone, I think he's still pretty sure we removed it for its screen test.
As for me, I know the MRI results don't look like anything a 9-year-old would consider to be a brain photo op, but my expectations are probably pretty unrealistic, too. In my dreams, those scans will unlock some secrets of my boy's lobes, illuminate his strengths and weaknesses, suggest ways to help or hinder. And of course, I'm hoping that those indications will match the ones I've cooked up in my own personal brain cells. Whether they'll answer any questions at all, much less the way I want, is for us to find out this morning at 10 a.m. I hope useful information isn't as unlikely as 8x10 glossies.
+ + +
SEPTEMBER 17, 2002
Well, the bad news is that my son really did have a seizure last week. The abnormal spikes on the EEG backed up with the inability to move his left arm and leg that I reported were enough to convince the doctor that he'd had one, and what I saw was the aftermath. Since this is only the second seizure in the eight years he's been with us, the doctor's advice was not to panic, but just to keep a closer eye on him. Hard to imagine we could watch him any closer than we already do, but I don't mind trying.
The good news, if you can call it that, is that I got a little validation for my observations. I was pretty sure that the EEG would show nothing, and I would be left with no relief for the vague feelings of guilt over making a big fuss over something that might have been nothing. Now I know that it was something after all. It's nice, once in a while, to know you were right.
That small feeling of triumph wasn't quite drowned out by the way my son behaved at the doctor's office, although he sure tried. What is it about doctors that make kids bring out their most extreme behavior? My son is never more wild than when he's being examined, and my daughter is never more shy and inarticulate. It makes me want to place secret cameras all around our home and school and compile videotapes of my kids being their funny, ineractive, wonderful selves. Then maybe I could leave the kids at home for the exams entirely.
+ + +
SEPTEMBER 18, 2002
So a new TV season is beginning yet again, and again I'll probably miss most of it. It's hard to watch TV before my daughter and son go to bed, because they've got our two sets locked onto the Disney Channel and the Food Network, respectively; and it's hard to watch it after they go to bed, because I tend to fall asleep the moment I sit down. I have a couple of old favorite shows I make time for, but they're getting fewer and fewer as my stamina decreases and cancellations increase (okay, so I'm still not entirely over the fact that "Once and Again" got the hook). There's not much this year that looks so wondrous as to remake my schedule of kids and sleep.
The one show I did set my clock for was Bonnie Hunt's new sit-com, called "Bonnie" or "Bonnie Hunt" or "The Bonnie Hunt Show" or something original like that. I'm a big enough fan of the actress that I'm putting my self-imposed ABC boycott (see "Once and Again," above) on hold for half an hour on Tuesdays to see if she can survive on the "Now You See It, Now You Don't" network. I was even able to convince my daughter to turn off Disney's other channel long enough to watch it with me, since she's seen "Return to Me" with me a dozen times and was up for watching "that blond lady" in something else.
Turns out a large slice of the cast of "Return to Me" is in the sit-com with her, and it was fun for my daughter to see all those actors in new roles (and confusing, since she hasn't completely grasped the fact that the characters in a show and the actors who play them are two separate entities, and I know she was secretly wondering why Charlie the Veterinarian and the waitress and the "water lady" were all doing different jobs and wearing different hairstyles). She liked it all enough to watch it again next week, and so did I. Any family show that can make my family seem calm and organized by comparison is going to keep me coming back.
+ + +
SEPTEMBER 19, 2002
Lovely news this morning from European researchers, who report that the germs in dust actually protect kids from developing hay fever and asthma. Don't you love it? All of us slovenly housekeepers have been magically transformed into health-minded moms, just like that. Put down the feather duster, girls, and have another cup of coffee.
I'd be feeling really good about this news except that, alas, my mother did keep a dust-free house, and now I am beset by horrible hay fever. Clearly, Mom did not pass the Need to Clean down to me, and so I may be able to keep the Need to Sneeze 10 Times in a Row from my own kids. The Need to be Lazy, though ... ah, it may be too late for that.
+ + +
SEPTEMBER 20, 2002
My son put himself to bed last night. That's a remarkable occurrence, because we're talking about a boy who usually has to be lassoed, wrestled, and forceably restrained to get him under the covers. But last night, Mama and Papa both fell asleep themselves well before kiddie bedtime -- me, because of an allergy medication that was not kidding when it said it would make you drowsy, and my husband, because, well, because falling asleep in front of the television is what he does -- and the little ones were left to fend for themselves. Our daughter used that freedom to watch a Disney Channel movie all the way to the end, then sit in her room listening to music and combing her hair and waiting for someone to stir. But our son, we found in his bed, all tucked in and sound asleep.
Now, of course, the system's not perfect. He was tucked in with the blanket under his chin on a warm night, and so was covered with sweat. And he hadn't gone to the bathroom pre-tuck-in, so we had to wake him up and go through the whole bedtime routine anyway. And of course, it wouldn't have hurt either of these young people to just GO AHEAD AND WAKE US UP when bedtime came and went. But if we can refine things a little, get the little guy to remember his pre-bed bathroom trip and the big girl to stop combing her hair and go to sleep, maybe we could just go ahead and stop pretending and set the adult bedtime in our house a half-hour or so earlier than the children's bedtime. Goodness knows we're the ones who are really tired at the end of the day.
Monday, September 09, 2002
September 9-13, 2002
SEPTEMBER 9, 2002
It's beginning to look as though I have enough personalized address labels to last me well into the next century. I didn't buy them, of course; they come daily, unbidden, free but with a catch. I suspect that everybody who has ever donated to so much as one charity is in the same boat, and that that boat is about to sink under the weight of tiny slips of sticky paper. Donate to one charity and you'll hear from ten more, and all will want you to enjoy their lovely gift of return address.
I don't know when address labels became the charity come-on to end all charity come-ons. My parents certainly had to buy their address labels, and there are still catalogs that offer them as though they were something to spend money on. But the idea to give them away for free-ish is sure a good one, for they put the potential donor in a potentially beneficial bind. It seems wasteful -- and maybe dangerous, in this day and information age -- to throw out something useful with your name written all over it; and while it seems coercive to pay for something you didn't ask for, it also seems dishonest to use something provided by a charity without providing something in return.
And so, good-hearted sucker that I am, I usually do send a donation. But it's starting to get out of hand. I have more of these things than I can possibly use, and still they come and come and come. It's about to the point where I'll challenge any charity to send me a come-on without address labels, and I'll double my donation. Wouldn't surprise me if threats of that nature -- "Donate immediately, or we'll send you 500 address labels!" -- start cropping up in dunning letters any day now.
+ + +
SEPTEMBER 10, 2002
In honor of the new health guideliness issued by the National Academies' Institute of Medicine (see today's Hot Health Headline), I started yesterday morning with a little bit o' fitness in the form of following an early-morning exercise show. I was pretty proud of myself for getting up early, and pretty glad that the workout wasn't hard, until I realized that perhaps this was a workout show in name only; the exercises were few, and the shots of the bikini-clad female instructors shaking their anatomy at the camera were many. I'm thinking that lumpy middle-aged women trying to trim down are not the demographic for this show; I'm thinking it's guys who've been up all night drinking or studying and want to look at jiggly babes before falling into a coma.
Of course, even if the half-hour workout had been vigorous, it wouldn't have been enough to get me off the hook with the National Academies' Institute of Medicine. The new recommendations propose an hour or more a day of moderately intense physical exercise, and ... an hour? a day? are they NUTS? They're saying it will give me good cardiovascular health, but I'm pretty sure it would cause full cardiac arrest. Besides, who has an extra hour lying around, or the energy to fill it with exercise? And what counts as "moderately intense"? Probably not a walk with my son, which involves momentary bursts of speed broken by long minutes of staring at leaves or interacting meaningfully with bits of trash by the side of the road.
So forget those guidelines; if I make it out of bed for thirty minutes of televised calisthenics, I'm going to call that a darn fine fitness commitment. And tomorrow, I'm going to try the TV show that comes on half an hour later. I don't know if the workout's any more intense, but at least there's a muscular guy among the instructors.
+ + +
SEPTEMBER 12, 2002
As a mom to kids with special needs, I sometimes feel as though I'm always doing the wrong thing: If I react to everything and try to micromanage their care or their education, I feel like I'm doing too much; but if I sit back and assume that things will be okay and everybody will do their jobs, I feel neglectful and foolishly trusting. I've been having those feelings about the start of the school year -- wondering if things weren't getting done because people resented my overinvolvement, and then noticing that they still didn't get done if I stayed out of it -- and now, in a different way, I'm feeling it about a health issue.
Yesterday morning, when I went to wake my son up, I found him on the floor. I asked if he fell out of bed and he said yes, and shook off my attempts to help him up. But it soon became apparent that he couldn't get up by himself. Every effort found him flopping back down on his left side. He didn't seem to be able to move his left arm and leg, which were if possible looser than their normal loose muscle tone. At first I thought he might have injured them in the fall, but he denied any pain (although, since he doesn't feel pain very well, I couldn't be too sure). With great effort I got him up on the bed, and after about 20 minutes he was able to move the limbs again, and after about an hour any residual weakness was gone, leaving only an extra helping of silliness in his behavior and some extra slurriness in his speech.
I probably could have sent him to school, since he was ambulatory by school time. I probably could have just added this to the list of things to mention to his neurologist when he sees her next Monday. I could have taken a calm, wait-and-see view. But instead, I kept him home and took him to the doctor, who on the basis of my account scheduled an MRI and EEG for today. And there, I think, is the root of the problem: On the basis of my account. Everything I do for my son has to be based only on my observation and articulation. He can't say what's going on, and I can't trust his report if he does, because it's liable to be either fanciful or an echo of what I've said to him. I can't even entirely trust that he couldn't move his limbs because he says he didn't. He seemed scared, and I put weight on that; but the rest is guesswork. And because of my guesswork, my guy has to be sedated and put through tests. What if I'm just making too much out of nothing, turning every little thing into a crisis to manage?
That same problem -- excessive reliance on my own observation and guesswork in the face of communication disabilities -- seems to face me everywhere I turn with my kids. Doctors grill me on my observations but share precious few of their own, and what they do share seems so heavily based on their interpretations of my interpretations that it's hard to put much credit in them. School teachers and officials seem to distribute honest information on a need-to-know basis, and even when you can prove your need to know, there's always spin, even from the very best, most concerned teachers. So I'm left to create scenarios in my head, and act accordingly, without knowing if I'm solving problems or making them. It's enough to make me want to crawl under the blankets and hide ... if I thought anybody would do anything in my absence.
+ + +
SEPTEMBER 13, 2002
Three things I learned from my son's visit to the hospital for an MRI and EEG yesterday:
• Never accept an afternoon appointment for a test that requires a child not to eat or drink anything. Because my guy was being sedated, he was on strict orders not to eat anything for six hours before the test. Last time he had an EEG, it was first thing in the morning, and no eat/drink was no problem. This time, the test was at 1 p.m., which meant no eating and drinking through a very long morning of "Mooom, I'm staaaaarving." Never mind that there are many mornings in which I have to force my son to eat breakfast and drink something with it. You always want what you can't have.
• Never accept an appointment that falls around lunchtime. Did I say the test was at 1 p.m.? That might have been true had the entire staff of the hospital not apparently taken their lunch break from 12:30 to 1:30. The woman in admitting didn't really want to find out why nobody could find record of our appointment or the referral our pediatrician's office had faxed; she just wanted us to go away so she could go to the cafeteria with her girlfriends. And once we did get to the MRI front desk, we gave our names to the just-about-to-go-to-lunch receptionist and then saw nobody else for an hour. The anesthesiologist showed up about the same time the receptionist came back. Folks, if you have an appointment with McDonald's at 1 p.m., make your appointments with patients for 2.
• Never forget that one or two competent people can make the difference. I was in a panic by the time the doctor arrived, because if this hospital couldn't even register people competently, how were they going to sedate and test my boy? But in fact, while the little things in our visit were frustrating to the extreme, the big things went fine. The actual medical professionals in charge of his care were confident and competent and ran us through the two procedures smoothly and expertly. Once they showed up, I had no complaints about the process whatsoever. Too bad we had to slog through two hours of bureaucracy to get to them.
It's beginning to look as though I have enough personalized address labels to last me well into the next century. I didn't buy them, of course; they come daily, unbidden, free but with a catch. I suspect that everybody who has ever donated to so much as one charity is in the same boat, and that that boat is about to sink under the weight of tiny slips of sticky paper. Donate to one charity and you'll hear from ten more, and all will want you to enjoy their lovely gift of return address.
I don't know when address labels became the charity come-on to end all charity come-ons. My parents certainly had to buy their address labels, and there are still catalogs that offer them as though they were something to spend money on. But the idea to give them away for free-ish is sure a good one, for they put the potential donor in a potentially beneficial bind. It seems wasteful -- and maybe dangerous, in this day and information age -- to throw out something useful with your name written all over it; and while it seems coercive to pay for something you didn't ask for, it also seems dishonest to use something provided by a charity without providing something in return.
And so, good-hearted sucker that I am, I usually do send a donation. But it's starting to get out of hand. I have more of these things than I can possibly use, and still they come and come and come. It's about to the point where I'll challenge any charity to send me a come-on without address labels, and I'll double my donation. Wouldn't surprise me if threats of that nature -- "Donate immediately, or we'll send you 500 address labels!" -- start cropping up in dunning letters any day now.
+ + +
SEPTEMBER 10, 2002
In honor of the new health guideliness issued by the National Academies' Institute of Medicine (see today's Hot Health Headline), I started yesterday morning with a little bit o' fitness in the form of following an early-morning exercise show. I was pretty proud of myself for getting up early, and pretty glad that the workout wasn't hard, until I realized that perhaps this was a workout show in name only; the exercises were few, and the shots of the bikini-clad female instructors shaking their anatomy at the camera were many. I'm thinking that lumpy middle-aged women trying to trim down are not the demographic for this show; I'm thinking it's guys who've been up all night drinking or studying and want to look at jiggly babes before falling into a coma.
Of course, even if the half-hour workout had been vigorous, it wouldn't have been enough to get me off the hook with the National Academies' Institute of Medicine. The new recommendations propose an hour or more a day of moderately intense physical exercise, and ... an hour? a day? are they NUTS? They're saying it will give me good cardiovascular health, but I'm pretty sure it would cause full cardiac arrest. Besides, who has an extra hour lying around, or the energy to fill it with exercise? And what counts as "moderately intense"? Probably not a walk with my son, which involves momentary bursts of speed broken by long minutes of staring at leaves or interacting meaningfully with bits of trash by the side of the road.
So forget those guidelines; if I make it out of bed for thirty minutes of televised calisthenics, I'm going to call that a darn fine fitness commitment. And tomorrow, I'm going to try the TV show that comes on half an hour later. I don't know if the workout's any more intense, but at least there's a muscular guy among the instructors.
+ + +
SEPTEMBER 12, 2002
As a mom to kids with special needs, I sometimes feel as though I'm always doing the wrong thing: If I react to everything and try to micromanage their care or their education, I feel like I'm doing too much; but if I sit back and assume that things will be okay and everybody will do their jobs, I feel neglectful and foolishly trusting. I've been having those feelings about the start of the school year -- wondering if things weren't getting done because people resented my overinvolvement, and then noticing that they still didn't get done if I stayed out of it -- and now, in a different way, I'm feeling it about a health issue.
Yesterday morning, when I went to wake my son up, I found him on the floor. I asked if he fell out of bed and he said yes, and shook off my attempts to help him up. But it soon became apparent that he couldn't get up by himself. Every effort found him flopping back down on his left side. He didn't seem to be able to move his left arm and leg, which were if possible looser than their normal loose muscle tone. At first I thought he might have injured them in the fall, but he denied any pain (although, since he doesn't feel pain very well, I couldn't be too sure). With great effort I got him up on the bed, and after about 20 minutes he was able to move the limbs again, and after about an hour any residual weakness was gone, leaving only an extra helping of silliness in his behavior and some extra slurriness in his speech.
I probably could have sent him to school, since he was ambulatory by school time. I probably could have just added this to the list of things to mention to his neurologist when he sees her next Monday. I could have taken a calm, wait-and-see view. But instead, I kept him home and took him to the doctor, who on the basis of my account scheduled an MRI and EEG for today. And there, I think, is the root of the problem: On the basis of my account. Everything I do for my son has to be based only on my observation and articulation. He can't say what's going on, and I can't trust his report if he does, because it's liable to be either fanciful or an echo of what I've said to him. I can't even entirely trust that he couldn't move his limbs because he says he didn't. He seemed scared, and I put weight on that; but the rest is guesswork. And because of my guesswork, my guy has to be sedated and put through tests. What if I'm just making too much out of nothing, turning every little thing into a crisis to manage?
That same problem -- excessive reliance on my own observation and guesswork in the face of communication disabilities -- seems to face me everywhere I turn with my kids. Doctors grill me on my observations but share precious few of their own, and what they do share seems so heavily based on their interpretations of my interpretations that it's hard to put much credit in them. School teachers and officials seem to distribute honest information on a need-to-know basis, and even when you can prove your need to know, there's always spin, even from the very best, most concerned teachers. So I'm left to create scenarios in my head, and act accordingly, without knowing if I'm solving problems or making them. It's enough to make me want to crawl under the blankets and hide ... if I thought anybody would do anything in my absence.
+ + +
SEPTEMBER 13, 2002
Three things I learned from my son's visit to the hospital for an MRI and EEG yesterday:
• Never accept an afternoon appointment for a test that requires a child not to eat or drink anything. Because my guy was being sedated, he was on strict orders not to eat anything for six hours before the test. Last time he had an EEG, it was first thing in the morning, and no eat/drink was no problem. This time, the test was at 1 p.m., which meant no eating and drinking through a very long morning of "Mooom, I'm staaaaarving." Never mind that there are many mornings in which I have to force my son to eat breakfast and drink something with it. You always want what you can't have.
• Never accept an appointment that falls around lunchtime. Did I say the test was at 1 p.m.? That might have been true had the entire staff of the hospital not apparently taken their lunch break from 12:30 to 1:30. The woman in admitting didn't really want to find out why nobody could find record of our appointment or the referral our pediatrician's office had faxed; she just wanted us to go away so she could go to the cafeteria with her girlfriends. And once we did get to the MRI front desk, we gave our names to the just-about-to-go-to-lunch receptionist and then saw nobody else for an hour. The anesthesiologist showed up about the same time the receptionist came back. Folks, if you have an appointment with McDonald's at 1 p.m., make your appointments with patients for 2.
• Never forget that one or two competent people can make the difference. I was in a panic by the time the doctor arrived, because if this hospital couldn't even register people competently, how were they going to sedate and test my boy? But in fact, while the little things in our visit were frustrating to the extreme, the big things went fine. The actual medical professionals in charge of his care were confident and competent and ran us through the two procedures smoothly and expertly. Once they showed up, I had no complaints about the process whatsoever. Too bad we had to slog through two hours of bureaucracy to get to them.
Tuesday, September 03, 2002
September 3-6, 2002
SEPTEMBER 3, 2002
Today is the last sweet day of summer vacation for my kiddos, who start school tomorrow morning promptly at 8:45 a.m. My daughter has been calling friends to find out who's in her assigned class, my son's been completing the immense packet of worksheets his teacher asked him to bring back in the fall for a prize, and I've been quietly obsessing over whether the proper preparations will have been put into place for my two to have an appropriate academic experience. After two months of almost daily phone calls to the special education office, I finally have something of a satisfactory answer as to whether my daughter's instructional aide will really be qualified to instruct, and whether my son's teacher will be experienced enough to handle him. But I've been misled before, and I won't relax until I've seen, met, and consulted with said personnel. A pursuit which also begins tomorrow.
When my daughter groans about how hard fifth grade is going to be and my son sighs about losing the freedom of summer, I tell them that they should think good thoughts, and expect their experience to be wonderful. I suppose, then, that I should take my own advice. But being a good special-ed advocate can be emotionally wearing; so rarely is the outcome actually anything approaching wonderful, and it's hard to get those hopes back up another time. Whenever I try to micromanage my kids' educational set-up, I regret it; but whenever I take a hands-off approach, I regret it, too. Finding the middle ground between those two is a perilous thing, fraught with offended teachers and appeasing administrators and poor choices hastily made. I'll do it again -- I have to do it, because it's pretty sure that nobody else will -- but I'm looking forward to it about as much as my daughter is fifth-grade swimming.
+ + +
SEPTEMBER 4, 2002
Today, after my kids get home from the first day of school, begins the paper chase. Or rather, the notebook chase, the ruler chase, the pencil chase, the folder chase. For today's the day we finally get the list of the school supplies their teachers expect. And, like seemingly every other family in town, we descend upon Staples.
No dancing down the aisles like that man in the ad for me; I'm elbowing down the aisles, pushing aside small children to get to that last glue stick. Why the school doesn't give us these lists at the end of the previous school year -- or at least with the class assignments that come a couple of weeks before the start of the new one -- I'll never know. It seems downright sadistic. I suppose I could get an early start by picking up some basic supplies, but even the basics are often subject to the specifics of teacher preference in ways I could never guess. Not any spiral notebook, but one with a specific number of pages. Not any pen, but ones in specific colors. Not any ruler, but one made of a specific substance. If I tried to shop ahead of time, not only would I still have to shop on the first day of school, I'd have to make exchanges.
So I'm waiting, credit card at the ready. Why is it that all the homework that comes home on the first day is really for the parents?
+ + +
SEPTEMBER 5, 2002
Well. It's never easy, is it?
I spent the summer calling the special education department on a near-daily basis, trying to wrest from them three pieces of information: Would my daughter get a proper instructional aide this time; which class would my son be in; and would my son have the same one-on-one aide he has had for three years now, the aide who knows him and handles him so well and whom he adores. For two months, I was told to call back, call back, call back on the first two -- but on the last one, I was assured that they'd never switch. That was always the thing I could count on.
So you can guess what happened.
It happened fast, and out of my sight. When I called the school on Tuesday to make sure everything was in place, his usual aide was there and waiting for him. When I dropped him at school Wednesday morning, ditto. But some time between 8:45 a.m. and about 2 p.m., when the child study team leader (God bless her) called to warn me that a change had been made, our long-known and trusted aide was spirited away and replaced by somebody else.
I called the special ed department again -- again! -- to complain, but it turned out the change had been made by the school principal, who had been left in the lurch when a classroom aide quit and had poached my son's aide to fill the hole. And I can't blame him. She's wonderful. She'd make a fine classroom aide, and I hope they give her the job for good. She knows the kids in the classroom she's filling in for, which makes her a natural choice. The principal has to put the good of many kids above the good of one, and I understand that. But none of it means I don't want her back, bad.
It's always like this, one way or the other, with special education. Every time I feel like I have my ducks in a row, somebody knocks them over. Sometimes I wonder why I even try. And sometimes I wonder whether somebody's staying up late trying to think of ways to screw things up.
+ + +
SEPTEMBER 6, 2002
I'm ending our first half-week of school here with an extreme case of "Mommy remorse," wondering -- anguishing really -- over whether I did the right thing in allowing my son to be skipped up a level to a self-contained class with kids he doesn't know as well and a new teacher who doesn't know him. There were good reasons to go along with the idea -- last year's teacher was pushing it, the kids in his former group were rowdy and rambunctious, he could use a little extra academic stimulation, the teacher he would have had if he hadn't skipped seemed a little stern to me -- and good reasons not to -- those rowdy and rambunctious kids were his buddies, his emotional development is so behind that it makes more sense to hold him back than push him forward, he'd be mainstreamed for art, music and gym with older kids who might give him a hard time -- but in the end I let the special ed department decide, and they did what the teacher suggested.
So now, of course, not only are all of his buddies in the class behind, but so is his longtime aide, having been moved to the position of the classroom aide for that group (see yesterday's dispatch). There's nobody in his new class who knows him at all now. The teacher sent home a rules sheet yesterday and included among the consequences removal of recess time, which I thought everybody knew by now is a really bad choice for hyperactive kids. The rules include things like "listen carefully" and "be polite and respectful" which are infinitely open to teacher interpretation and infinitely difficult for a child with FAE to get a handle on. So right off the bat, I'm worried. And I see his friends from last year running around together and wonder why I ever thought it was an acceptable idea to pull him out of that and put him in a more challenging situation.
I could probably get him put back with his old group. But then, of course, I'd kill myself worrying that *that* decision was wrong. I'll meet with his new teacher next week and see what she has to say for herself. Maybe she can convince me that she understands how to handle my guy -- not just handle him but nurture him, bring him along academically and behaviorally in a way that will make me end the year bursting with "Mommy pride." I'll believe it when I hear it.
Today is the last sweet day of summer vacation for my kiddos, who start school tomorrow morning promptly at 8:45 a.m. My daughter has been calling friends to find out who's in her assigned class, my son's been completing the immense packet of worksheets his teacher asked him to bring back in the fall for a prize, and I've been quietly obsessing over whether the proper preparations will have been put into place for my two to have an appropriate academic experience. After two months of almost daily phone calls to the special education office, I finally have something of a satisfactory answer as to whether my daughter's instructional aide will really be qualified to instruct, and whether my son's teacher will be experienced enough to handle him. But I've been misled before, and I won't relax until I've seen, met, and consulted with said personnel. A pursuit which also begins tomorrow.
When my daughter groans about how hard fifth grade is going to be and my son sighs about losing the freedom of summer, I tell them that they should think good thoughts, and expect their experience to be wonderful. I suppose, then, that I should take my own advice. But being a good special-ed advocate can be emotionally wearing; so rarely is the outcome actually anything approaching wonderful, and it's hard to get those hopes back up another time. Whenever I try to micromanage my kids' educational set-up, I regret it; but whenever I take a hands-off approach, I regret it, too. Finding the middle ground between those two is a perilous thing, fraught with offended teachers and appeasing administrators and poor choices hastily made. I'll do it again -- I have to do it, because it's pretty sure that nobody else will -- but I'm looking forward to it about as much as my daughter is fifth-grade swimming.
+ + +
SEPTEMBER 4, 2002
Today, after my kids get home from the first day of school, begins the paper chase. Or rather, the notebook chase, the ruler chase, the pencil chase, the folder chase. For today's the day we finally get the list of the school supplies their teachers expect. And, like seemingly every other family in town, we descend upon Staples.
No dancing down the aisles like that man in the ad for me; I'm elbowing down the aisles, pushing aside small children to get to that last glue stick. Why the school doesn't give us these lists at the end of the previous school year -- or at least with the class assignments that come a couple of weeks before the start of the new one -- I'll never know. It seems downright sadistic. I suppose I could get an early start by picking up some basic supplies, but even the basics are often subject to the specifics of teacher preference in ways I could never guess. Not any spiral notebook, but one with a specific number of pages. Not any pen, but ones in specific colors. Not any ruler, but one made of a specific substance. If I tried to shop ahead of time, not only would I still have to shop on the first day of school, I'd have to make exchanges.
So I'm waiting, credit card at the ready. Why is it that all the homework that comes home on the first day is really for the parents?
+ + +
SEPTEMBER 5, 2002
Well. It's never easy, is it?
I spent the summer calling the special education department on a near-daily basis, trying to wrest from them three pieces of information: Would my daughter get a proper instructional aide this time; which class would my son be in; and would my son have the same one-on-one aide he has had for three years now, the aide who knows him and handles him so well and whom he adores. For two months, I was told to call back, call back, call back on the first two -- but on the last one, I was assured that they'd never switch. That was always the thing I could count on.
So you can guess what happened.
It happened fast, and out of my sight. When I called the school on Tuesday to make sure everything was in place, his usual aide was there and waiting for him. When I dropped him at school Wednesday morning, ditto. But some time between 8:45 a.m. and about 2 p.m., when the child study team leader (God bless her) called to warn me that a change had been made, our long-known and trusted aide was spirited away and replaced by somebody else.
I called the special ed department again -- again! -- to complain, but it turned out the change had been made by the school principal, who had been left in the lurch when a classroom aide quit and had poached my son's aide to fill the hole. And I can't blame him. She's wonderful. She'd make a fine classroom aide, and I hope they give her the job for good. She knows the kids in the classroom she's filling in for, which makes her a natural choice. The principal has to put the good of many kids above the good of one, and I understand that. But none of it means I don't want her back, bad.
It's always like this, one way or the other, with special education. Every time I feel like I have my ducks in a row, somebody knocks them over. Sometimes I wonder why I even try. And sometimes I wonder whether somebody's staying up late trying to think of ways to screw things up.
+ + +
SEPTEMBER 6, 2002
I'm ending our first half-week of school here with an extreme case of "Mommy remorse," wondering -- anguishing really -- over whether I did the right thing in allowing my son to be skipped up a level to a self-contained class with kids he doesn't know as well and a new teacher who doesn't know him. There were good reasons to go along with the idea -- last year's teacher was pushing it, the kids in his former group were rowdy and rambunctious, he could use a little extra academic stimulation, the teacher he would have had if he hadn't skipped seemed a little stern to me -- and good reasons not to -- those rowdy and rambunctious kids were his buddies, his emotional development is so behind that it makes more sense to hold him back than push him forward, he'd be mainstreamed for art, music and gym with older kids who might give him a hard time -- but in the end I let the special ed department decide, and they did what the teacher suggested.
So now, of course, not only are all of his buddies in the class behind, but so is his longtime aide, having been moved to the position of the classroom aide for that group (see yesterday's dispatch). There's nobody in his new class who knows him at all now. The teacher sent home a rules sheet yesterday and included among the consequences removal of recess time, which I thought everybody knew by now is a really bad choice for hyperactive kids. The rules include things like "listen carefully" and "be polite and respectful" which are infinitely open to teacher interpretation and infinitely difficult for a child with FAE to get a handle on. So right off the bat, I'm worried. And I see his friends from last year running around together and wonder why I ever thought it was an acceptable idea to pull him out of that and put him in a more challenging situation.
I could probably get him put back with his old group. But then, of course, I'd kill myself worrying that *that* decision was wrong. I'll meet with his new teacher next week and see what she has to say for herself. Maybe she can convince me that she understands how to handle my guy -- not just handle him but nurture him, bring him along academically and behaviorally in a way that will make me end the year bursting with "Mommy pride." I'll believe it when I hear it.