Monday, August 26, 2002

August 26-30, 2002

AUGUST 26, 2002

Well, we survived another vacation. A few moments from our trip to Williamsburg, Va.:

Trip highlight: My daughter throwing aside a significant amont of fear and learning to drive a Go-Kart.

Trip lowlight: My son throwing up in the Food Lion supermarket.

Disaster narrowly averted: During a screwed-up check-in that involved moving among three different units, I left my son's much-beloved Scooby Doo doll in one of the bedrooms left behind. He was rescued by Maintenance and safetly returned.

Disaster not averted at all: My daughter caught a frisbee with her mouth instead of her hands, causing a split lip.

Least favorite educational attraction: Colonial Williamsburg, which my daughter, being a preteen and constitutionally averse to anything good for her, labeled "boring."

Favorite educational attraction: The Children's Museum in Portsmouth, in whose fake city bus my son would still be playing if we hadn't dragged him away.

Thing we appreciated least about Williamsburg: Humidity you could swim in.

Thing we appreciated most: Possibly the greatest concentration of fast-food joints known to man.

Most commonly heard child's complaint, arrival through Friday evening: "I don't like it here, I wish we were back home."

Most commonly heard child's complaint, Saturday morning departure: "I like it here, I wish we could stay."

How I knew I was really home: Took a look through my son's IEP, which had arrived in our absence, and felt my blood pressure return to pre-vacation highs.

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AUGUST 27, 2002

I was talking with a friend the other day about my son, and how people seem to respond positively to him even when he's doing something socially unacceptable, like grabbing their keys and asking them nosy questions. I've always thought it's because he looks and acts so much younger than his nine years -- that people were responding to him as a precocious preschooler rather than a peculiar third-grader. But my friend felt that it was my boy's obvious neurological quirks that made people realize that he need to be treated with extra understanding. And though I've never considered that, he surely does present as different than your average child, and anybody who notices his jumping, hand-waving and foot stomping or listens to his high-pitched, sometimes oddly-cadenced voice and slurry words might indeed be inclined to cut him some slack. I've certainly noticed such oddities in other kids, and done the same.

So it's been interesting to read through his IEP and see how determined the good people who work with him are to rid him of all those mannerisms that have been most effective in gaining him understanding from the populace at large. Making him walk upright without bending over; making him speak with tone, speed and pitch befitting his "age and gender"; curtailing his jumpiness; helping him to appear in all ways like a "normal" child -- these are thought-out, strategized goals pervading all facets of his education. And while I understand that these are the sort of things special-ed professionals are trained to go after, I wonder if, in the case of this specific child, they're really doing him any favors. The greatest curse to befall children with FAE is to appear perfectly normal but be perfectly unable to back that up with normal cognitive and behavioral abilities. My son has never suffered from that, probably because two years of Russian orphanage deprivation sent his development out of whack in so many readily observable ways. Why should we take that safeguard from him now, when he's moving into the treacherous waters of upper elementary and middle school?

I say, let him jump, squeak, sway and swing at will. And make it a major goal for him to, I don't know, learn something?

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AUGUST 28, 2002

There's outrage a-brewin' in cyberspace over a movie called "The United States of Leland," whose subject matter includes the murder of an autistic child. What the film thinks of that event is hard to know at this point; since it's due for release in 2003, possibly at the Sundance festival, there's not much information about it on-line as yet.

From what little I've been able to glean from the few Web sites that mention it -- the production company's site at, for example, and,, and -- it sounds as though the film is a serious study of why an apparently sensitive, intelligent teen-ager would commit a crime so horrific as murdering an autistic child. That the young man claims to have done it out of sadness for the child -- as "emotional euthanasia" -- does not appear, from what I've read, to be the film's point of view, but rather a point of view that the film takes pains to present as puzzling. Also examined are the ramifications of the event on the families of both the murderer and the victim.

In the wake of tragic events like the Columbine shootings and even Sept. 11, an examination of why human beings commit inhuman acts certainly seems appropriate. In a society that increasingly sees lawsuits for wrongful birth from the parents of handicapped children outraged at having lost the right to abort them, an examination of the value of persons with special needs and whether it's ever right to judge that their suffering is greater than their right to life sounds of interest as well. And as somebody whose son has an affliction -- fetal alcohol effect -- whose sufferers have been known to commit crimes of impulse without any sort of reasonable thought behind it, I'm not particularly offended if the movie doesn't immediately and irredeemably scapegoat the teen for his act. It's entirely possible that there will be much in this movie to offend, but at least as equally possible that it may provoke very useful thought.

Of course, the folks who circulate on-line petitions have no time for such subtleties. This one concludes that the film uses the murder of an autistic child solely for entertainment value, and wants us to get up in arms. Myself, I'd like a little more information before I let something like this raise my blood pressure. As anyone who loves a child with special needs knows, it's a bad idea to judge anything by what's most readily visible from the surface.

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AUGUST 29, 2002

We added a masterpiece of modern technology to our home yesterday. No, not a new computer; not a DVD player or a digital camera or a cooking convenience. We're talking a little something in the toilet line, or maybe at the top of the toilet line: a brand spankin' new, gleaming white Power Flush toilet. And it may not seem like much to you, but the whole silly thing -- with its macho name, inner workings encased in black plastic and explosive WHOOSH that ensures that what comes out must go down -- makes me feel like I'm stuck in a Dave Barry column, or maybe an episode of "Home Improvement." I can only imagine how Tim Taylor would turbo-power his Power Flush.

It's nice, certainly, to finally have a toilet that takes care of business. But already, I'm seeing a downside, which is: that WHOOSH throws my easily overstimulated son into a gleefully hyper tizzy. He couldn't be more thrilled with it! He does a little dance! He has to be present for every gloriously percussive flush! Now it's true, he also used to obsess over what didn't disappear in our old, Weak Flush commode. This is, I suppose, an improvement. But I'll be glad for the day when he doesn't have to scream "BOOM!" every time someone flushes. Simple pleasures are the best, but still.

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AUGUST 30, 2002

I read a book over my week of vacation called "Strategies that Work: Teaching Comprehension to Enhance Understanding" (so much for light summer reading). It went over a lot of the same reading comprehension territory as a book I read last year, "Mosaic of Thought," but with some more concrete strategies for implementation. One of the things the book recommended teachers do is ask students what they think it means to read. Their answers should help those teachers understand what sort of problems they may be having.

So I asked my daughter, for whom reading comprehension has always been so frustrating. She gave me that blank stare I so often see when I ask a question out of her depth, and then she managed to dredge up some definitions that all had the word "read" in them. When I challenged her to come up with a definition that did not contain the word "read," she just shrugged. I figured that would be the last of it.

But a few days later, she told me proudly that she knew what the word "read" meant. I was shocked that she still rememembered that I'd asked -- usually my attempts at philosophical conversation are forgotten with extreme prejudice -- and begged to know. And her answer was: "Staring at black marks on paper." Which does, indeed, reinforce for me again what an entirely uninteresting experience reading is for her, and how far we have to go to make reading something that involves meaning and learning and excitement and fun. Maybe the fact that she was able to formulate such a useful answer indicates that she's ready to hit that road.

Monday, August 12, 2002

August 12-16, 2002

AUGUST 12, 2002

My friend and I went to see Lyle Lovett and Bonnie Raitt in concert on Saturday at the same venue as the Aaron Carter concert I took my daughter to last year. The two concerts couldn't have been more different, or made me feel older by comparison. The contrasts between then and now:

Then: Teenyboppers
Now: Baby Boomers

Then: $3.50 bottle of water
Now: $6.75 Jumbo Draft Beer

Then: Nickelodeon, extreme sports, up-and-coming teen idols
Now: Hybrid cars, alternative energy, green tea

Then: Aaron Carter, filled with preteen pep, bounced around the stage doing energetic and elaborate dance moves.
Now: Lyle Lovett, recently injured by a bull, sat throughout his performance; while Bonnie Raitt did stand and walk, the greatest activity in her set was the changing of the lights against her gauzy backdrop curtains.

Then: Getting to play basketball with Shaq; getting a date
Now: Getting older; getting out of a bad relationship

Then: Lots of scantily clad dancers
Now: Lots of aging studio musicians and Large Band members in shirts and ties

Then: Dancing, jumping, screaming
Now: Tapping out of rhythm on knees, hearty applause, the occasional “Whooo”!

Then: Big cheers whenever Aaron removed an article of clothing
Now: Big cheers for particularly well-executed cello solos

Then: Ritalin
Now: Viagra

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AUGUST 13, 2002

Yesterday I made the mistake of asking my daughter too many questions about what she does during her summer days home with her grandmother. I should have kept my mouth shut, and just imagined her watching wholesome PBS programs and having chats about family history or something. But I had to ask: “What did you watch on TV this morning, sweetie?” And she had to say, “I watched a show about ex-boyfriends and ex-lovers. They killed people, but then the people were on the show. And after that, there were these really fat ladies taking off all their clothes.”

Thank you very much, Maury Povitch.

My daughter didn’t seem particularly shaken up by her peek at the seamy side of life. She reported all the glorious details with a big grin. When I asked her what her grandmother had said about this -- hoping for a pearl of moral wisdom from the older generation -- she reported that “Grandma said those people are jackasses!” Well, it’s wisdom, anyway.

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AUGUST 14, 2002

I've been keeping an eye on the new detective show "Monk" with some amusement. It's good, I guess, that we've come far enough in mental health awareness that OCD is so familiar it can be used as a TV-show hook. "Obessive Compulsive Detective" is a pretty good pitch line, though I'm not so sure about the other line the ads often use -- "Defective Detective." Would we have used that line to describe, say, "Ironside"?

Monk's mental illness is generally played for laughs, or at least mild wackiness, and while I'm guessing the reality of the disease is not quite so cute, I do like the way in which the thing that is wrong with Monk is often also the thing that helps him do his job well. I've been trying to convince people for years that my son's hyperactivity and hypercuriosity may be keys to his intelligence, not road blocks to it. It's interesting to see some acknowledgment, even in the shallowest of TV terms, that the aberrations of our brains are rarely universally good or bad.

Seeing OCD become such a household term -- the show is moving from the USA Network to ABC, at least for four weeks this summer -- makes me wonder if "Monk" will inspire a wave of new diagnoses. I also wonder if the concept's success will spawn a whole bunch of new shows that use disability as a wacky jumping-off point. Shall we expect, say, "ADHD M.D."? "Bipolar P.I."? "ODD D.A."? Stay tuned for Alphabet Soup TV.

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AUGUST 15, 2002

I made that mistake again this morning. The one where my son just doesn't seem quite right, but there's nothing I can put my finger on, and so I send him to school, and he throws up. It happened a few months ago at school, and then a couple of weeks ago when he seemed out of sorts, I kept him home, and nothing -- no throwing up, no problems. So this morning, when he seemed off but couldn't quite tell me what if anything might be wrong, I let him go to camp at nine o'clock. And got a call around 10:27.

It's not unusual for any kid to have that "nothing's wrong but nothing's quite right" disease, but I do think there's a particular challenge with kids with fetal alcohol exposure who really don't feel pain the way the rest of us do. My guy is unlikely to come out with something so direct as "My throat hurts" or "My stomach hurts" or "My head hurts." He's gotten to the point where he can act hurt when he can see the problem -- he knows if you fall you're supposed to say "Ow!" But internal things ... I don't know that he can really articulate those aches and pains. When he was little, he went two months with an ear infection without saying a word, and I don't think he's all that advanced from there now.

And so I'm left figuring out possible internal ailments from external behavioral clues. Sadly, in my son's case, it turns out that when he's quiet, calm, obedient and especially well-behaved, that means something's wrong. He was up early this morning, got dressed on his own, ate all his breakfast without quarrel. Man, I should have known.

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AUGUST 16, 2002

Is it rude to shush somebody else's child in their parents' presence?

I ask because an usher did that to my son and I at church last Sunday, and I still haven't quite forgiven him. He succeeded in making me feel unwelcome in my own church, and I don't honestly think that's part of an usher's job description. Nor is enforcing complete and mandatory silence in the narthex while Mass is in session.

We had retreated to that back area of the church, my son and I, because the cry room was too crowded and there are some benches we can usually sit in at the corner of the narthex so that we are still in the church building, but out of the way of bothering others. This week, though, two ushers were sitting on that bench chatting while the homily droned on, and when they saw us coming, my son babbling as he will, they shushed us with such vehemence that it drove me outside. As I sat on an outdoors bench with my guy, I couldn't help but wonder: Who says you can't make any noise in the narthex during Mass? And why doesn't that rule apply to chattering ushers?

One time when somebody shushed my son in my presence at church, she later admitted that she thought I was another child, and therefore equally due for a lesson on staying quiet in worship spaces. Maybe this usher thought the same thing, I don't know. I do know that, while I may not look my 43 years, anybody who thinks I look like a kid needs to get their eyesight checked. And I did see the same usher shush another family, clapping his hands at them and driving them back in the cry room, and I doubt he thought the father was another child. Maybe he just thought everybody should shut up and let him finish his conversation.

I know I'm overreacting to all of this; the problem is, I think, that I spend so much time worrying that my son migh be bothering somebody and arguing with people in my head that he has special needs and a very hard time being quiet, that when someone actually does make a comment they get the full force of twenty or thirty minutes of internal debate.

But I can't help but feel that the constant shushing of children -- and, for that matter, the relegating of them to a little glass room in the back, where they'd just better stay -- is endemic of a lack of welcome of little ones to the church. Surely our faith is not so thin that a whoop and a holler here and there will tear it in two.

And I also can't help but feel -- the crux of the problem, I know, and one I try to bury under lots of nice rhetoric about welcoming noisy children into worship -- that shushing a child in his or her parent's presence is more a judgment on the parent than on the child. And you know what? I'm trying to keep my kid quiet as hard as I can. If anyone's going to shush him, it will be me. Don't give that look, you. Just pray for us, and for your so judgmental self.

Myself, I maybe need to work a little bit on forgiveness.

Monday, August 05, 2002

August 5-9, 2002

AUGUST 5, 2002

It's pretty easy to find items in the news these days to make you fret about our increasingly litigious society. I shook my head when I read about all the obstetricians and midwives going out of business because malpractice insurance is too expensive to make their businesses viable. I rolled my eyes when I read about the overweight man who is suing fast-food restaurants for serving him unhealthful fare. But on Sunday, I saw a news item that represents a new low, if it's possible to get any lower: A 9-year-old is suing a 10-year-old, and a judge has ruled that he's allowed.

The incident at isssue was a practice swing at a baseball game in Newark, N.J., during which the older boy accidentally hit the younger one in the face with an aluminum bat, causing a broken bone and the loss of front teeth. And you know, my heart goes out to that injured kid. But to his parents and any lawyer who would pursue a lawsuit in this situation, not so much. What sort of settlement are they expecting to get from a 10-year-old, anyway? The proceeds of his lemonade stand? Are they going to seize his allowance every week? And what about a countersuit -- why was that 9-year-old standing close enough to get hit by the bat in the first place? Surely the 10-year-old experienced some emotional distress after hitting his friend.

If we're going to start letting children sue children, I worry where this will end up. Will every "He touched me!" and "She looked at me!" echoing between siblings in the back seat be accompanied by "You'll be hearing from my lawyer!" Will every playground mishap end up in court? Surely kids who are teased or snubbed or picked last for teams suffer at the hands of their classmates; do they have a case? I see personal injury lawyers hovering around the fences of our elementary schools, looking for work. Talk about just saying no; can't we, now?

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AUGUST 6, 2002

We've been having lots of thunderstorms out here on the East Coast this hot and hazy summer, and that's bad news for my thunder-fearing daughter. Something about loud low noises sends her in a panic, whether they're coming from celestial bowling or from, say, the overloud bass at a rock concert. She's become slightly less upset by thunder as the summer progresses, probably just because she's heard so darn much of it, but she still wants someone else in the room with her while it's booming.

I remember feeling embarrassed for her a month ago when she whimpered and cried on the tennis court as a thunderstorm approached, cowering behind me (not an easy feat, since she's about five inches taller than I am) and trying to push me to the car. I wasn't worried about being in an open space with lightning flashing around. But that's a case where her fears were warranted. We've read a little about lightning storms recently, and in fact a big open place is a pretty bad place to be. And then, this past Friday, a lightning strike killed a Boy Scout from our church at a campground in Pennsylvania; he was outside during the storm, getting younger campers to safety, when a bolt hit the ground and traveled right into him. My daughter didn't know the boy, and didn't see the news story. I'm pretty sure, if she did, we would never, ever be able to go out in the rain.

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AUGUST 7, 2002

I've been enjoying the bank advertisements that have been popping up lately touting how friendly and customer-service-oriented their institutions are. Not how much money they'll make you; not how astute they are at money management; not how many nifty options they offer; but how welcome they'll make you feel. I've been enjoying them because they make me realize that I'm not alone in feeling my bank sees me as nothing more than a bag of money to be tossed around, kicked to the back room and left to gather dust. Or stand in line for 45 minutes, whichever comes first.

It's hard to know what's been the worst recent offense of our local banking branch. The time the teller working the drive-through lane sent my husband's cash and driver's license to another car stands out. Then there was the time I waited with my daughter and increasingly noisily impatient son while the teller went from fellow employee to fellow employee, all of us trying to convince her that *YES*, when a person with a passbook savings account makes a transaction, you really do have to enter it in the passbook. I do hold a bit of a grudge, too, at the way the bank president always made a big deal of greeting me when he knew I had some money to invest, and now completely ignores me. Customer service isn't their thing, apparently.

I don't think that sort of impersonal, yeah-we're-inept-so-what approach is particularly new; I remember my father ranting about the same things more than 30 years ago. But advertisments holding out the hope of something better still call to me. I don't actually move my money, mind you, because I know in my cynical heart of hearts that those banks beckoning so friendlily will snub me just as hard once they've got my bucks. I'd rather hold onto the dream of something better than find out it's really worse.

At least until one of those ads says, "And if you have a scoodgy boy with special needs in line with you, we will take you into a special toy-filled waiting room and let him watch Sponge-Bob Square-Pants videos while we personally handle your transaction and give you a nice massage." That might get me.

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AUGUST 8, 2002

My story from Tuesday about the Boy Scout from our church who was killed by lightning last weekend (and how I hoped to keep that information from my daughter, whose fear of thunderstorms would expand exponentially) brought a thoughtful letter from Stephanie Mullins, a mom of 8 from Dripping Springs, Texas. I thought her comments were worth sharing, especially since the thought of my hyperactive FAE son driving fills me with more terror than my daughter's ever felt from thunder. She wrote:

"Unfortunately, I cannot hide the loss of young people in our small community from my emotionally challenged kiddos. They hear about it before me usually, from their peers. Our young drivers die in car wrecks on the highway that runs swiftly through our town past the schools. A Scout Master has died, teachers, friends, and peers are plucked from class seats. They have been at the wrong place at the wrong time. Our own family has two teens who were involved in crashes that miraculously let them walk away from a totaled car with only trauma and glass embedded in their skin.

"I do use these horrific times at funerals and memorials to talk to them about ways they can drive safer and more defensively. Teens love to speed. Unfortunately, the ADHD mine all have denies them the cause and effect lessons they need to drive safely. So my job as their driving coach is to hold off on the license as long as possible. Requiring they pay for their own first car and expensive car insurance delays the inevitable naturally."

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AUGUST 9, 2002

My son and I went to the park yesterday with a friend from school and his mom. And what a fashion-forward duo these boys were. Just like any respectable teen-ager or a pair of Calvin Klein underwear models, they couldn't keep their pants up. Inches of undie rode above the tops of their slumping shorts. My nephew, now in his 20s, used to wear his pants like that, but that's because he'd buy his trousers about five sizes too big. For my son and his friend, an utter lack of hips and butt did the trick. Two scrawny 9-year-olds airing their underthings on a sunny day and two moms thinking seriously about belts, that was us.

Now of course, as we all know, fashion isn't easy. My son's buddy disdainfully told him that while it's okay to let your underwear show if you're wearing boxers, as he was, it's uncool to do so if you're wearing briefs, my son's undergarment of choice. And indeed, I have to admit, "cool" is not the word that comes to mind when you're showing quite a lot of stretchy "Hot Wheels"-printed fabric to the world. On the other hand, boxer boy was wearing his undies inside out, and letting tags and seams show when your pants droop ain't exactly the coolest either. Clearly, they both need some work. And maybe suspenders.