We've now successfully made it through the first week of school without major trauma. My daughter settled down after her first dreadful day of middle school and is now down to simply not liking it, from hating it with every fiber of her being. I've had enough contact with school personnel to feel that she'll probably be okay. My son's teacher has been conscientiously following through on every note I send her and every discussion we've had. She sent me the report that finally came through from the behaviorist who saw him last year, and it's pretty hilarious stuff -- apparently, among other things, my guy took off his shoes 21 times in the course of two hours of observation (and apparently was nagged to put them back on again 20 times by his aide, which may explain some of the problems he was having). Yesterday she reported that a behaviorist saw him again, and that we'd discuss it at our meeting on Tuesday at 8 a.m. I've got my IEP tote bag all loaded up and ready to go. And in the spirit of getting back to a school year of advocacy, here's an IEP List of serious sites that have been lurking around my e-mail inbox:
1. A page from the LDPride Web site that offers explanations of learning styles and multiple intelligences, including a quiz that can help you figure out your or your children's styles. I personally learn best in short intense bursts of concentration between long fitful bouts of procrastination. I wonder if that's an official style?
2. An article on "Explosive Outbursts in Children With Tourette's Disorder" from the Journal of the American Academy of Child and Adolescent Psychiatry.
3. "Measuring the facial phenotype of individuals with prenatal alcohol exposure: correlations with brain dysfunction" looks interesting and very promising, but I was not able to get past the point where I'm supposed to measure all this stuff on my kid's face. He's supposed to sit still for this? For years, his head circumference would vary greatly from doctor visit to doctor visit because he put up such a fight, and these were professionals. I'm just as liable to prove he doesn't have FAS with all this measuring, and then we'll be back in "what the heck is wrong with this kid?" land again. Maybe I'll leave well-enough alone.
4. The Apraxia-Kids site, with lots of good information, publications, and message boards.
5. And, okay, one frivolous one, for when you're home from the child study team meeting and just want to crawl into your jammies, curl up in bed, and think about how simple life used to be — Kermitage.com is a site that gives complete rundowns of every episode of every season of "The Muppet Show." The amount of free time it must take to put something like this together astounds me, but I'm grateful just the same. Everything's better after a visit with Fozzie Bear.
Saturday, September 06, 2003
Thursday, September 04, 2003
The day after
I'd like to report that my reassurances to my daughter all summer long that middle school would be fine were prophetic, and that everything was indeed okay. Alas, she came home crying and saying she didn't like middle school at all and dreading the fact that she ever had to go back again. I'd hoped that, since she's in an inclusion class and is supposed to have a special-ed teacher to help her, someone would be making sure throughout the day that she was okay and knew what to do. I'd hoped that, since her IEP specifies that she has auditory processing problems and needs visual aids and reinforcement, someone would understand that a day spent listening to rules and regulations and instructions of all sorts would be beyond stressful. And maybe they did -- once my girl gets panicky, she can't explain what's going on with her very well, to people at school or to me, either.
I spent the evening calming her down, setting up what routines I could with limited knowledge of the school day, getting her a notebook big enough to hold what she'd need to get through the day in case she couldn't figure her locker out, writing notes to teachers in the hope they'd give a little aid and comfort. It's not the way I'd like to start out; I spend a lot of time convincing people that my daughter doesn't need hand-holding, and that she should be given the opportunity to do anything the other kids are doing. I believe that's true, and that once she gets comfortable she will be fine in middle school. But for this first week? A little hand-holding would probably be good.
Meanwhile, back at elementary school, my son had a good first day. They did manage to scare up an aide for him, and his teacher did set up a meeting with me within the first week as promised, and all in all the prognosis is good. Just so there's no crisis with him until I settle the crisis with his sister. One disaster at a time, is all I ask.
I spent the evening calming her down, setting up what routines I could with limited knowledge of the school day, getting her a notebook big enough to hold what she'd need to get through the day in case she couldn't figure her locker out, writing notes to teachers in the hope they'd give a little aid and comfort. It's not the way I'd like to start out; I spend a lot of time convincing people that my daughter doesn't need hand-holding, and that she should be given the opportunity to do anything the other kids are doing. I believe that's true, and that once she gets comfortable she will be fine in middle school. But for this first week? A little hand-holding would probably be good.
Meanwhile, back at elementary school, my son had a good first day. They did manage to scare up an aide for him, and his teacher did set up a meeting with me within the first week as promised, and all in all the prognosis is good. Just so there's no crisis with him until I settle the crisis with his sister. One disaster at a time, is all I ask.
Tuesday, September 02, 2003
First day of school, minus one
Now, here's the kind of thing that drives me crazy: I called the principal at my son's school this morning, the day before the first day of school, to see if I could find out who would be my boy's individual aide this year. There were three aides at the school that were likely possibilities, one much hoped for, the other two problematic, and I thought if I could get a name, I could prepare my kid and maybe myself. And surprise! The principal reported that he had talked to the special ed office, and they claimed that my son's IEP indicated no need for an individual aide. So, never mind worrying about which aide it would be -- there was no aide for him at all.
I did a quick double-check of his IEP, and "individual aide" was listed there, big as life. I called the special ed office and was told by a secretary that she knew nothing, nobody who knew anything was available, and I had to talk to the child study team leader. Called the child study team -- nobody there, left a message. Fumed for a while. The child study team leader, I will say, called me back pretty promptly, having straightened things out as well as they can be straightened on less than 24 hours notice. There will be an aide. It will be someone entirely new. Perhaps someone just hired. Maybe the aide will be in place tomorrow. Maybe not. But soon. I've made it clear that if my boy gets in trouble before he gets his aide, I will blame the school district. It's not like this aide is a new thing -- he's had one for the past three years. Why does everything have to be so hard?
So now I'm trying to figure out if this is a bad omen -- the beginning of a chain of screw-ups -- or a good omen -- the one messed-up thing that always has to happen, gotten out of the way early. Tomorrow may tell. I'll report back.
I did a quick double-check of his IEP, and "individual aide" was listed there, big as life. I called the special ed office and was told by a secretary that she knew nothing, nobody who knew anything was available, and I had to talk to the child study team leader. Called the child study team -- nobody there, left a message. Fumed for a while. The child study team leader, I will say, called me back pretty promptly, having straightened things out as well as they can be straightened on less than 24 hours notice. There will be an aide. It will be someone entirely new. Perhaps someone just hired. Maybe the aide will be in place tomorrow. Maybe not. But soon. I've made it clear that if my boy gets in trouble before he gets his aide, I will blame the school district. It's not like this aide is a new thing -- he's had one for the past three years. Why does everything have to be so hard?
So now I'm trying to figure out if this is a bad omen -- the beginning of a chain of screw-ups -- or a good omen -- the one messed-up thing that always has to happen, gotten out of the way early. Tomorrow may tell. I'll report back.
Monday, September 01, 2003
Pushy doctors and murderous millionaires
An IEP List of recent items in the news.
1. Another case of doctors trying to take away parents' rights to decide on their child's treatment. I don't know if the parents are right or wrong here, but the idea of losing custody for trying to get a second opinion is pretty scary.
2. A health report suggests that too much inactivity, TV and sunscreen may be leaving teens deficient in Vitamin D.
3. I've worried a lot about what being the oldest kid in class, by a year or two, might be doing to my daughter, but according to this report, being the youngest isn't a bowl of cherries either.
4. Kid's Health News offers pointers on finding a doctor for your child, and although it's aimed at parents of new babies, it's just as applicable to new adoptive parents. In our case, with our kids with special needs and especially our hyperactive son, we found that the most important things were a) a practice in which you see the same doctor every time, so you don't have to go through the whole involved history again and again; and b) a practice where you don't have to spend an hour in the waiting room.
5. A fairly bizarre story about the questions being posed to potential jurors in the trial of Robert Durst, a millionaire in NYC who alledgedly shot his neighbor, indicates that, among other things, his defense may include a claim that he has Asberger's syndrome.
1. Another case of doctors trying to take away parents' rights to decide on their child's treatment. I don't know if the parents are right or wrong here, but the idea of losing custody for trying to get a second opinion is pretty scary.
2. A health report suggests that too much inactivity, TV and sunscreen may be leaving teens deficient in Vitamin D.
3. I've worried a lot about what being the oldest kid in class, by a year or two, might be doing to my daughter, but according to this report, being the youngest isn't a bowl of cherries either.
4. Kid's Health News offers pointers on finding a doctor for your child, and although it's aimed at parents of new babies, it's just as applicable to new adoptive parents. In our case, with our kids with special needs and especially our hyperactive son, we found that the most important things were a) a practice in which you see the same doctor every time, so you don't have to go through the whole involved history again and again; and b) a practice where you don't have to spend an hour in the waiting room.
5. A fairly bizarre story about the questions being posed to potential jurors in the trial of Robert Durst, a millionaire in NYC who alledgedly shot his neighbor, indicates that, among other things, his defense may include a claim that he has Asberger's syndrome.
Sunday, August 31, 2003
Teen hypochondria, and more
An IEP List of random thoughts for today.
1. My 13-year-old's been moaning and groaning about aches and pains all summer, with headaches and stomachaches and potential dread diseases galore. Since she seems pretty healthy, I haven't been taking her complaints too serioiusly, figuring that her ailments are either growing pains; teen-girl hormones at work; or the result of spending too much time with her grandmother, who can deliver a pretty mean litany of ailments herself. This item from the ParenTalk Newsletter has me wondering otherwise; maybe she's really just being a teen, and this is the only cool way of begging TLC. I'll be trying to give a little more of it from now on.
2. If you're looking for ways to a do a little at-home speech therapy with your kids, try this book of one-a-day "Articulation and Language Activities." My daughter's therapist gave us a copy of August's selections, and she's enjoyed doing them so much that I'm planning to buy the book and continue through the year.
3. Did your mom ever put little notes in your school lunch? Mine did, and I remember it as a feel-good sort of thing, though at the time it may have been a feel-embarrassed one, too. An article on catholicmom.com promotes the idea of slipping notes to loved ones all over the place, and really, I'll think about it; but in this day and age, shouldn't we just be text-messaging them instead?
1. My 13-year-old's been moaning and groaning about aches and pains all summer, with headaches and stomachaches and potential dread diseases galore. Since she seems pretty healthy, I haven't been taking her complaints too serioiusly, figuring that her ailments are either growing pains; teen-girl hormones at work; or the result of spending too much time with her grandmother, who can deliver a pretty mean litany of ailments herself. This item from the ParenTalk Newsletter has me wondering otherwise; maybe she's really just being a teen, and this is the only cool way of begging TLC. I'll be trying to give a little more of it from now on.
2. If you're looking for ways to a do a little at-home speech therapy with your kids, try this book of one-a-day "Articulation and Language Activities." My daughter's therapist gave us a copy of August's selections, and she's enjoyed doing them so much that I'm planning to buy the book and continue through the year.
3. Did your mom ever put little notes in your school lunch? Mine did, and I remember it as a feel-good sort of thing, though at the time it may have been a feel-embarrassed one, too. An article on catholicmom.com promotes the idea of slipping notes to loved ones all over the place, and really, I'll think about it; but in this day and age, shouldn't we just be text-messaging them instead?
Friday, August 29, 2003
The IEP List: Stressing about School
Mostly, I'm happy that my kids are going back to school on Wednesday. Mostly, my reaction is like the one in the second line of Ken Swarner's new "Family Man" column. But I have to admit that the onset of school season has me a little stressed, too. Here's what's on this Involved, Educated Parent's worry list for today.
1. My son ended his mostly successful seven weeks at a mainstream summer camp by mooning his campmates. Does this mean that a) he's ready to get back to the structure and control of his self-contained special-ed classroom; or b) that I'm going to be getting lots of very interesting calls from the principal?
2. All those wonderful and perceptive notes to the teacher I was going to write for the first day of school -- the ones I had all summer to write, at my creative leisure -- are unwritten still. And due Wednesday.
3. The very year I send my sweet, good little 13-year-old to middle school, a movie comes out about a sweet, good little 13-year-old who goes to middle school and learns some Very Bad Things. I thought Evan Rachel Wood, the movie's star, was fantastic in the late, lamented "Once and Again," and so I wish her and her movie well, but -- sheesh. Do I really have to do a daily check for body piercings and shoplifted goods? (Maybe not. Slate has an interesting take on preteens and the moms who worry about them.)
4. I will never be as organized as these people.
5. I got my daughter this simple, basic homework planner, partly because there were good recommendations on amazon.com and the cover is yellow, her favorite color, but I don't know -- do you think I should have gotten this fancier one instead? Personally, I like a lot of bells and whistles with my planner, but my girl's even a little confused by the simple one, so maybe I chose wisely.
6. The blissful summer of imagining how well the upcoming school year is going to go is over, and now I have to start dealing with things again -- did they give my son the right aide? is he in the right class? is my daughter actually getting inclusion after three years of promises? is she being coddled too much? is he being protected enough? are plans being followed? is behavior being analyzed? is homework being done? When I think of all the phone calls and letters and meetings and conferences and wailing and gnashing of teeth in my near future, it makes me want to sit and moan with my daughter, "Why can't it be June again?"
1. My son ended his mostly successful seven weeks at a mainstream summer camp by mooning his campmates. Does this mean that a) he's ready to get back to the structure and control of his self-contained special-ed classroom; or b) that I'm going to be getting lots of very interesting calls from the principal?
2. All those wonderful and perceptive notes to the teacher I was going to write for the first day of school -- the ones I had all summer to write, at my creative leisure -- are unwritten still. And due Wednesday.
3. The very year I send my sweet, good little 13-year-old to middle school, a movie comes out about a sweet, good little 13-year-old who goes to middle school and learns some Very Bad Things. I thought Evan Rachel Wood, the movie's star, was fantastic in the late, lamented "Once and Again," and so I wish her and her movie well, but -- sheesh. Do I really have to do a daily check for body piercings and shoplifted goods? (Maybe not. Slate has an interesting take on preteens and the moms who worry about them.)
4. I will never be as organized as these people.
5. I got my daughter this simple, basic homework planner, partly because there were good recommendations on amazon.com and the cover is yellow, her favorite color, but I don't know -- do you think I should have gotten this fancier one instead? Personally, I like a lot of bells and whistles with my planner, but my girl's even a little confused by the simple one, so maybe I chose wisely.
6. The blissful summer of imagining how well the upcoming school year is going to go is over, and now I have to start dealing with things again -- did they give my son the right aide? is he in the right class? is my daughter actually getting inclusion after three years of promises? is she being coddled too much? is he being protected enough? are plans being followed? is behavior being analyzed? is homework being done? When I think of all the phone calls and letters and meetings and conferences and wailing and gnashing of teeth in my near future, it makes me want to sit and moan with my daughter, "Why can't it be June again?"
Thursday, August 28, 2003
The IEP List: Three semi-cool sites
These sites may not, in the end, turn out to be as useful as they seem -- but they're still interesting spots for Involved, Educated Parents with a little time to kill.
1. Special Education News seems like a pretty great idea -- special education-related news items in categories like "behavior management" and "for families" -- but maybe there's not enough news to go around, because the site doesn't look like it's been updated in years. Still, some nice special-needs parenting links.
2. The Santa Ana Unified School District has an enormous array of forms online for downloading, including behavior contracts, reports and requests, and something called an IEP Writer. I don't know if these can be adapted to parental uses, or indeed for uses anywhere outside the Santa Ana Unified School District, but it sure looks like a treasure trove.
3. The Special Education Advocacy Class page offers downloads of videos with titles like "Least Restrictive Environment," "Life Span Development," and "The Math of Psychological and Educational Testing." Sadly, they won't play on Macs, so they're useless to me, but I've heard they're pretty good.
1. Special Education News seems like a pretty great idea -- special education-related news items in categories like "behavior management" and "for families" -- but maybe there's not enough news to go around, because the site doesn't look like it's been updated in years. Still, some nice special-needs parenting links.
2. The Santa Ana Unified School District has an enormous array of forms online for downloading, including behavior contracts, reports and requests, and something called an IEP Writer. I don't know if these can be adapted to parental uses, or indeed for uses anywhere outside the Santa Ana Unified School District, but it sure looks like a treasure trove.
3. The Special Education Advocacy Class page offers downloads of videos with titles like "Least Restrictive Environment," "Life Span Development," and "The Math of Psychological and Educational Testing." Sadly, they won't play on Macs, so they're useless to me, but I've heard they're pretty good.
Wednesday, August 27, 2003
Introducing "The IEP List"
The start of a new school year is as good a time as any to make changes and reorganize, and since I seem to be having more ideas for this blog lately than I ever get the self control to sit down and write about, I'm going to institute a new feature on "Parenting Isn't Pretty." Let's call it, for now, The IEP List -- with IEP standing not for Individualized Education Program, but Involved, Educated Parent (or maybe Information, Education, Procrastination). It will be a daily grab bag of news stories, Web sites, book recommendations, and half-formed musings. Something like this:
1. USA Today, AP and others give statistics gleaned from the 2000 Census about adoptive families. Among the findings: There are 1.6 million adopted kids in the U.S., about 2.5% of all children; 13% are adopted from other countries, of which Korea is #1. I remember that some adoptive parents complained about having to give out that information when the Census was circulating, but it's kind of nice to have the stats now.
2. I don't know what part of this USA Today story on "Captain Underpants" author Dav Pilkey makes me like him more: the fact that he struggled with ADHD and dyslexia as a kid and succeeded as an author as much because of as in spite of them; or the fact that he and Cynthia Rylant, probably my favorite children's author, are "sweethearts."
3. Two stories of dramatically different approaches to dealing with autism: one mom who brought her autistic 8-year-old son to be prayed over in an exorcism attempt that resulted in the boy's death; and another mom who camped out in front of a new Krispy Kreme store for 13 days so that her autistic son, who's 12 and obsessed with the donuts, could cut the ribbon for the store opening.
4. A 9-year-old girl left home alone with her 4-year-old cousin loaded him in her mother's SUV and went for a little joyride. She could barely see over the steering wheel, but managed to weave down a busy street, turn into a parking lot, hit several cars and finally strike a pedestrian. My kids to play at sitting in the driver's seat sometimes, and I've let them start the car a time or two, but maybe I should stress again that actually putting it in gear and leaving the driveway is out of the question. Car insurance is expensive enough without covering 9-year-olds.
5. This bingo game for business meetings makes me think that somebody should be putting one together for IEP meetings. I've sure wanted to yell the victory word suggested a time or two in one of those get-togethers.
1. USA Today, AP and others give statistics gleaned from the 2000 Census about adoptive families. Among the findings: There are 1.6 million adopted kids in the U.S., about 2.5% of all children; 13% are adopted from other countries, of which Korea is #1. I remember that some adoptive parents complained about having to give out that information when the Census was circulating, but it's kind of nice to have the stats now.
2. I don't know what part of this USA Today story on "Captain Underpants" author Dav Pilkey makes me like him more: the fact that he struggled with ADHD and dyslexia as a kid and succeeded as an author as much because of as in spite of them; or the fact that he and Cynthia Rylant, probably my favorite children's author, are "sweethearts."
3. Two stories of dramatically different approaches to dealing with autism: one mom who brought her autistic 8-year-old son to be prayed over in an exorcism attempt that resulted in the boy's death; and another mom who camped out in front of a new Krispy Kreme store for 13 days so that her autistic son, who's 12 and obsessed with the donuts, could cut the ribbon for the store opening.
4. A 9-year-old girl left home alone with her 4-year-old cousin loaded him in her mother's SUV and went for a little joyride. She could barely see over the steering wheel, but managed to weave down a busy street, turn into a parking lot, hit several cars and finally strike a pedestrian. My kids to play at sitting in the driver's seat sometimes, and I've let them start the car a time or two, but maybe I should stress again that actually putting it in gear and leaving the driveway is out of the question. Car insurance is expensive enough without covering 9-year-olds.
5. This bingo game for business meetings makes me think that somebody should be putting one together for IEP meetings. I've sure wanted to yell the victory word suggested a time or two in one of those get-togethers.
Thursday, August 21, 2003
New on Mothers with Attitude
Just in time for the start of school and the resumption of early wake-up calls, Julie Donner Andersen delivers a rallying cry (or maybe a rallying snooze alarm) for sleepyheads in her latest "Therapeutic Laughter" column, Attack of the Morning People. My daughter's always been one of those morning people — the one I can always count on to be up and dressed and self-fed long before my son and I manage to open a bleary eye — but even she's been falling into later and later summer sleeping habits lately. Making that 8:15 a.m. middle school opening bell may be more challenging than I expected, although perhaps nobody will actually notice if I'm driving the car in my PJs. ... Ken Swarner reflects on the many and creative names being given to grandparents these days in the current installment of his Family Man column. In our family, we've had a grandma, grandpa, nana and dada. Also a "tootah," derived form the Russian word for aunt, which is what my kids call my daughter's godmother. Then, too, I guess you could say that my nephew's name for me is a little strange: it's "uncle." I keep trying to persuade him that I'm an aunt, really I am, but he's four years old and he's pretty sure he's got it right. I blame the Teletubbies. ... Teasing is the topic for April Cain's new "Thinking It Over" column, Swimming Upstream in the Food Chain of Childhood. I can't feel too righteously indignant about teasing right now, since my son is apparently still teasing his little campmate on a daily basis. Well, the teachers call it teasing; I think he's just perseverating on the kid's name, yelling it out to him over and over, with no particular malice in his heedlessly impulsive head. Of course, none of that's going to mean much to the kid who's being yelled at. Maybe his mom's somewhere complaining about this mean boy who's teasing her son, and what kind of parents would raise a boy who would do that? Knowing the futility of lecturing about things that are basically impulsive and un-willful, I'm just hoping he'll get distracted and find something new to fixate on until camp's over. And not, let's hope, someone.
Wednesday, August 20, 2003
Pop (and mom) quiz
What kind of parent are you? (Sorry -- "exhausted" isn't one of the categories.) If you're in the mood for a little self-examination, try iParenting.com's parenting style quiz and ID yourself as permissive, authoritarian, or authoritative. Me, I scored high for Parenting Style C, "authoritative," which is described as "demanding of your child but you give in return. You are open to discussion and negotiating, giving the child firmness and self-control. The parent-child relationship is based on respect and routines. Children learn social skills and their self-image is a positive one." I like to think that I really am this way, but of course it was pretty easy to see which answers in the quiz would lead to such a happy self-assessment, and though I wouldn't say I cheated, I'll admit to being suggestible.
It doesn't help, of course, that the choice of answers on general parenting quizzes like this one bear approximately zero relationship to the parenting of children with special needs. I'd need a fourth or maybe fifth or sixth choice on some of these scenarios, and others aren't anything I'm likely to experience with my two. Being demanding and getting respect aren't honestly big on my list of priorities; I'm just happy if everybody gets through the day without a meltdown by any one of us. Maybe that's the kind of parent I am: Style D, "Survivalist."
It doesn't help, of course, that the choice of answers on general parenting quizzes like this one bear approximately zero relationship to the parenting of children with special needs. I'd need a fourth or maybe fifth or sixth choice on some of these scenarios, and others aren't anything I'm likely to experience with my two. Being demanding and getting respect aren't honestly big on my list of priorities; I'm just happy if everybody gets through the day without a meltdown by any one of us. Maybe that's the kind of parent I am: Style D, "Survivalist."
Tuesday, August 19, 2003
Book report
One of the nicest things about our recent vacation was the opportunity to spend some uninterrupted time reading, thanks to the kid-distracting presence in our time-share of two TVs and a Game Cube. (Oh, stop yelling at me. The kids played outside plenty. They went in the pool. They went on go-carts. They walked and swung and slid and bowled and bumper-boated. They also read -- my daughter finished two Magic Tree House books and my son and I knocked off 11 chapters of James and the Giant Peach. So don't begrudge me the rest and relaxation that comes with kids being electronically occupied.) Among the five -- count 'em, five! -- books I finished during the week was The Curious Incident of the Dog in the Night-Time, an offbeat mystery narrated by a 15-year-old autistic boy. I thought the author, who has worked with autistic teens, got the kid down just right, within the bounds of poetic license. I nodded and thought of my own neurologically challenged guy frequently.
I also found it interesting that, despite the fact that the story was told through the rigid and sometimes obsessive point of view of the child, the author managed to sneak in a pretty accurate sense of what it feels like to parent a kid like this. Not that the parents come off all that well -- their considerable and sometimes tragic mistakes are what lurches the main part of the story into action -- but the frustration and helplessness of trying to reach your child and screwing up and trying again and screwing up again and seeing things you thought would help blow up in your face and trying again ... that had me nodding, too. The strain a child with special needs puts on a marriage, the impossibility of having any sort of independent life, the necessity of putting one's self aside and putting one's child first -- all those hard, hard things are rendered with a fair amount of poignancy, considering that the narrator is unable to express emotion. It's a nice feat of writing, in a book that does well by its challenged and challenging protagonist. I'd certainly recommend it, even if you have to prop your own little detective in front of a video game to find the time to read it.
I also found it interesting that, despite the fact that the story was told through the rigid and sometimes obsessive point of view of the child, the author managed to sneak in a pretty accurate sense of what it feels like to parent a kid like this. Not that the parents come off all that well -- their considerable and sometimes tragic mistakes are what lurches the main part of the story into action -- but the frustration and helplessness of trying to reach your child and screwing up and trying again and screwing up again and seeing things you thought would help blow up in your face and trying again ... that had me nodding, too. The strain a child with special needs puts on a marriage, the impossibility of having any sort of independent life, the necessity of putting one's self aside and putting one's child first -- all those hard, hard things are rendered with a fair amount of poignancy, considering that the narrator is unable to express emotion. It's a nice feat of writing, in a book that does well by its challenged and challenging protagonist. I'd certainly recommend it, even if you have to prop your own little detective in front of a video game to find the time to read it.
Sunday, August 17, 2003
Vacation's over
Well, we survived another family vacation. This year's will probably be remembered as "the one where the lights went out," since our destination was within the reach of the Great Blackout of '03, as our paper is calling it. I'm happy to report that guests and staff at the resort in the Catskills responded to the lack of power with as fair a degree of calmness and fellowship as has been reported among the citizens of New York City, although none of us were actually trapped in a subway. In fact, at the moment the air conditioners went out, I myself was on a trail ride getting my arm scratched by a horse who thought it would be funny to walk me real, real close to every low-branched tree he could find. Once it became clear that the power was well and truly out, we did a little scurrying to make sure we'd have something to eat for dinner, and a little worrying about how we would go to the very dark bathroom in the middle of the night with no light, but the lights came back on before the night had completely fallen, and in plenty of time to watch "West Wing" reruns on Bravo, so all was well. And now we're back home, updating clocks that have been blinking for days and perusing days-old newspaper reports and getting ready to get back to real life. And, of course, write about it.
Sunday, August 10, 2003
And away we go
If you're one of those fantastically disciplined moms who never misses a good planning tip or organizational strategy, you'll want to check out this ParentStages.com list of things to do to get ready for a family car trip. Then again, if you're a "dash around at the last minute like a chicken with its head cut off" kinda mom, like me, you'll want to go ahead and print out that fabulously idealistic list, put it somewhere, forget where it is, spend all your packing time dashing around looking for it, and finally throw everybody's gear in the minivan in plastic shopping bags from the grocery. All our, um, bags are packed, and my family's heading off today for a week away. Please use this time as an opportunity to check out our archives and all the goodies over at Mothers with Attitude. Happy sunburning!
Thursday, August 07, 2003
Break the law, cure a kid
Want to contribute to autism research? In New Jersey, it's as easy as running a stop sign, speeding or passing on the right. A new law places a $1 surcharge on moving violations to fund autism research in the Garden State. It's hard to say what the connection would be between autism and bad driving — there's no retributional theme, like maybe fining drunk drivers more heavily and giving the money to researching fetal alcohol syndrome — but hey, research money is research money. ... If you'd rather contribute to research in a way that doesn't add points to your license or raise your insurance rates, check out the survey for mothers of children with special needs being conducted by writer Amy Baskin. Participants may be quoted in a book Baskin is co-authoring on the ways in which moms "manage to maintain their own identity, dreams and professional goals while mothering a child with a disability." Dreams? Professional goals? Sounds ambitious to me. Most days, I'm happy if I just manage to maintain my sanity.
Wednesday, August 06, 2003
No port in a storm
My son is partway through his second summer at a mainstream camp, and interestingly, for the second year, the only kid he's having any trouble with is another child with special needs. Shouldn't there be some sort of honor among the neurologically impaired, that when they're a minority among the neurologically sound they bond together? The only thing I can figure is that the "regular" kids are better able to appreciate that my guy's a little different and adjust their own behavior to accommodate his, while other kids with differences are too locked into their own rigid habits to do so. It makes me wonder about the fact that I'm so adament about him being in a self-contained class in school -- would he do better socially, somehow, in a mainstream class? Or would extended exposure to him in situations where his quirks aren't so amusing cause the mainstream kids to lose their good will. We're not likely to find out soon, since I still think he needs the structure and protection that a self-contained class affords him. But it sure bears some thinking about.
Tuesday, August 05, 2003
The Problem with Paxil
Depressing news about the anti-depressant Paxil: The FDA has issued a recommendation that the drug not be administered to children and adolescents diagnosed with depression while it reviews "reports of an increased risk of suicidal thinking and suicide attempts" among those users. Of course, as the FDA FAQ points out, it never actually approved Paxil for pediatric use in the first place, but physicians still prescribe it for what is delicately referred to as "an off-label use." And is this because they have a rock-solid knowledge of childhood depression and exactly what is needed to cure it? These words from the FDA don't exactly fill one with confidence:
And yet, I'm sure there are children who have been helped by Paxil. I'm sure there are parents who feel it has saved their children's lives, and will now agonize over whether they really have to find a new drug. It may ultimately be found that there is no risk of suicidal thinking after all, and kids may have to go through the long and complicated withdrawal process for nothing. As leery as I am of medication in situations like this, I can't deny that many good parents whose opinions I trust feel strongly in its favor. It's a decision that every family has to make for themselves.
Still, in this day when medication is so strongly urged and promoted; when doctors tell me it's silly to have reservations; when TV commercials make you wish you had something wrong with you so you could take a pill and be like all those happy people — it's maybe good to have a reminder that a great deal of psychiatric diagnosing and medicating of children is a matter of throwing stuff at the wall and seeing what sticks. Like giving insulin to a diabetic? Not so much.
Childhood depression is different from adult depression. The reasons are not clear but could relate to the continuing development of the child’s brain. It has been difficult to show effectiveness in children of antidepressants known to work in adults and a number of effective adult antidepressants have not been shown to work in childhood depression Children may also react very differently to some medicines and some side effects over a range of drugs are seen in children that are not seen in adults.So a drug that's not approved for children is being prescribed for something nobody really understands very well. And if instead of making your kid happy it make him want to kill himself? Oops, oh well, try something else.
And yet, I'm sure there are children who have been helped by Paxil. I'm sure there are parents who feel it has saved their children's lives, and will now agonize over whether they really have to find a new drug. It may ultimately be found that there is no risk of suicidal thinking after all, and kids may have to go through the long and complicated withdrawal process for nothing. As leery as I am of medication in situations like this, I can't deny that many good parents whose opinions I trust feel strongly in its favor. It's a decision that every family has to make for themselves.
Still, in this day when medication is so strongly urged and promoted; when doctors tell me it's silly to have reservations; when TV commercials make you wish you had something wrong with you so you could take a pill and be like all those happy people — it's maybe good to have a reminder that a great deal of psychiatric diagnosing and medicating of children is a matter of throwing stuff at the wall and seeing what sticks. Like giving insulin to a diabetic? Not so much.
Monday, August 04, 2003
Heard any bad adoption jokes lately?
Anybody out there got an opinion? Hmm? Anybody actually manage to get out of the house and watch a movie? Anybody get to watch TV before their kids go to bed, or stay awake after? Anybody getting into those fun summer beach reads? Personally, I can't remember the last time I went to the movies or watched a prime-time show all the way through in actual prime time. My current fun read is a book on "Developmental Reading Disabilities" which is intended for speech therapists and is slightly over my head (which at least gives me some sympathy for how reading feels to my daughter all the time). That's why I've had a little trouble keeping up the Adoption Watch message board all by myself. It's way easier to comment on the media and popular culture when you're personally exposed to it.
The plan was to set the board up and to watch other people's comments come pouring in — because I thought at the time, and still do, that a clearinghouse for information on the portrayal of adoption in the media was something that would be useful and of interest to a great many people. But either those great many people never found the board or never bothered to post on it, because my original posts have grown old and lonely and dusty without much company. So I'm going to make another try to post frequently myself, and invite anyone else out there who hears of or sees movies, TV shows, books or articles that touch on adoption to post about them as well. You no longer have to join ezboard to post; just make up an alias and go. Somebody? Anybody?
The plan was to set the board up and to watch other people's comments come pouring in — because I thought at the time, and still do, that a clearinghouse for information on the portrayal of adoption in the media was something that would be useful and of interest to a great many people. But either those great many people never found the board or never bothered to post on it, because my original posts have grown old and lonely and dusty without much company. So I'm going to make another try to post frequently myself, and invite anyone else out there who hears of or sees movies, TV shows, books or articles that touch on adoption to post about them as well. You no longer have to join ezboard to post; just make up an alias and go. Somebody? Anybody?
Saturday, August 02, 2003
New on Mothers with Attitude
Here's the downside of helping your kids learn to read and write and spell: It's not so easy to keep secrets from them anymore. So Ken Swarner laments in his latest Family Man essay. ... And on the subject of reading, I've put together a page featuring the books my kiddos have been plowing through this summer. If you're looking for good reads for reading- or attention-disabled youngsters, it's a good place to start. (Love those Cobble Street Cousins.)
Friday, August 01, 2003
Reading to Invisible Scooby
I've been feeling a little bad about reading to my son this summer. Not that I don't love the time we spend curled up with a book together, or think that listening to a parent read has no value to a child. It's just that he's a good reader in his own right, and I like for him to exercise that skill, too.
But the book we've spent the past month or more on, "There's a Boy in the Girls' Bathroom" by Louis Sachar, was one he preferred to hear the first time through. I know it wasn't beyond his sight reading level; the chapters were short, like he likes them, and the print wasn't tiny. But it's almost as though he was so interested in the subject matter -- about a boy so unpopular in school that his only friends are little toy make-believe animals he relates to in his room -- that he didn't want to have to waste attention on the mechanics of reading. Sometimes, you have to let art wash over you.
When we finally finished the book earlier this week, he grabbed it from me rather than letting me put it back on the shelf. I let him take it to his room, although the clutter quotient in that smallish space is awfully high, and was rewarded with the sound of him reading it for himself -- to his own make-believe friend. In his case, it's the much-loved Invisible Scooby-Doo who's getting to hear his master's deft, emotionally rich interpretation of the text. One day, I hope he'll read like that to me. But for now, I'm glad he lets me read to him. (Next up: Judy Blume's "Freckle Juice." Should I worry that my son's already asked if he can color his face with Magic Marker?)
But the book we've spent the past month or more on, "There's a Boy in the Girls' Bathroom" by Louis Sachar, was one he preferred to hear the first time through. I know it wasn't beyond his sight reading level; the chapters were short, like he likes them, and the print wasn't tiny. But it's almost as though he was so interested in the subject matter -- about a boy so unpopular in school that his only friends are little toy make-believe animals he relates to in his room -- that he didn't want to have to waste attention on the mechanics of reading. Sometimes, you have to let art wash over you.
When we finally finished the book earlier this week, he grabbed it from me rather than letting me put it back on the shelf. I let him take it to his room, although the clutter quotient in that smallish space is awfully high, and was rewarded with the sound of him reading it for himself -- to his own make-believe friend. In his case, it's the much-loved Invisible Scooby-Doo who's getting to hear his master's deft, emotionally rich interpretation of the text. One day, I hope he'll read like that to me. But for now, I'm glad he lets me read to him. (Next up: Judy Blume's "Freckle Juice." Should I worry that my son's already asked if he can color his face with Magic Marker?)
Hair from the heart
I seem to be hearing a lot lately about a program called Locks of Love. First it was in a comic strip called "Zits" — a teenage girl was complaining about how impossible it was to do anything with her long messy hair, and her mother suggested she cut the offending hair off and give it to someone who needs it. The daughter learned that "Locks of Love" makes donated hair into wigs for children who have lost their hair due to cancer or alopecia, and ultimately does sacrifice her ponytail to the cause.
Then, a few weeks later, our priest presented the exact same tale as a true story in his homily. Maybe it was just a coincidence and there are lots of teens crabby enough about their hair to cut it off for the cause; or maybe he doesn't believe anybody in his congregation reads the funny papers. But it was enough to make me want to look into the organization, find the Web site, and think about how I can help.
The fact is, although I am not myself a crabby teen girl, I have been growing my hair out lately. I don't think I've had it cut in more than a year, mostly because the thought of scheduling and actually taking the time to go to the hairdresser fills me with exhaustion. But now, see, I'm not just lazy and unkempt: I'm lazy and unkempt for charity. I figure I've got a good couple of years before my locks will be anywhere near the 10" required for donation, and then I can go for one free trim, have the hair lopped off, and then go back to doing absolutely nothing while my next contribution grows. This is the kind of volunteer work I can really get into.
Then, a few weeks later, our priest presented the exact same tale as a true story in his homily. Maybe it was just a coincidence and there are lots of teens crabby enough about their hair to cut it off for the cause; or maybe he doesn't believe anybody in his congregation reads the funny papers. But it was enough to make me want to look into the organization, find the Web site, and think about how I can help.
The fact is, although I am not myself a crabby teen girl, I have been growing my hair out lately. I don't think I've had it cut in more than a year, mostly because the thought of scheduling and actually taking the time to go to the hairdresser fills me with exhaustion. But now, see, I'm not just lazy and unkempt: I'm lazy and unkempt for charity. I figure I've got a good couple of years before my locks will be anywhere near the 10" required for donation, and then I can go for one free trim, have the hair lopped off, and then go back to doing absolutely nothing while my next contribution grows. This is the kind of volunteer work I can really get into.