Archive for October, 2008

Yet Another Possible Cure

October 31, 2008

It seems like there’s been a breakthrough every other day recently, doesn’t it? Maybe one of these days it’ll actually lead to something I can give to my son. That’d be nice.

(Thanks to Michael B. for the link!)


Hey! Stop Being Good!

October 31, 2008

We’re finally taking Sonny back to the doctor today, and we’ll almost certainly adjust his various medications. As I’ve recorded here, he’s been hyper, moody, unfocused, and all around bananas. People, we’ve been counting the hours until we can get some new dosages or maybe some new pills entirely, as it’s clear the current set-up is just not working.

And of course, naturally, yesterday was his best day in several weeks. His teacher e-mailed:

I wanted to let you know that Sonny had a very good day. He made good choices and earned lots of fun rewards. He also did his independent work today all by himself with no prompts! He worked for about 7 minutes. Great job Sonny!

He was in great spirits when I came home from work. He did his homework without complaint and by himself — even his math. Not everything was correct, of course, but he was happy (!) to allow me to help fix his mistakes. He decided that having completed his homework, he had “earned the backyard,” so we went outside to play Frisbee for a while before going to pick up his sister at ballet.

Both kids ate decent dinners, a borderline miracle, and then Sonny calmly retrieved a Tupperware full of grapes to eat while he watched Mary Poppins. After a while I turned off the TV and had the kids read. Sonny read Monster Trucks, one of his cherished “Mighty Machines” books. He was focused and happy with himself the whole time, not growing at all frustrated when he didn’t know a word. Then pajamas, then some more reading, then bed. I told Sonny he was the best kid in the world and he squirmed like a puppy dog.

All this, I say, before we adjust his medication as we’ve been so desperate to do. CAN’T THIS KID SHOW THE SLIGHTEST BIT OF CONSISTENCY?!

The Big Test

October 30, 2008

This past weekend brought us a pair of stories, in the Washington Post and the Wall Street Journal, about improved pre-natal testing and the fears they might lead to an increased number of abortions.

The Post:

The tests, which use “gene chips” to detect much subtler chromosomal variations than standard prenatal testing can, have also triggered complaints that they mark another step toward a society that seeks to weed out aberrations in the quest for the perfect child… The tests, which cost about $1,600 and are not yet covered by insurance, can detect about 150 known genetic disorders that can cause physical deformities, mental retardation and a host of health and behavioral problems.

Proponents argue that the tests allow couples to harness the latest molecular technology to target the most devastating genetic syndromes, alleviating their worries in some cases and in others identifying abnormalities soon enough to terminate the pregnancy or prepare to care for an afflicted baby.

But critics say the tests have not been thoroughly validated and threaten to produce a flood of murky, misleading results that will subject emotionally vulnerable couples to unnecessary anxiety, perhaps prompting some to abort healthy pregnancies.

Some worry that the technique could be used to hunt for the rapidly growing list of genetic markers that merely signal an increased risk for cancer, diabetes, mental illness, obesity, addiction and other conditions later in life. Someday, similar tests could perhaps even vet fetuses for traits associated with beauty, personality or intelligence.

It’s hard not to look down the slippery slope, to a Brave New World where everybody is happy and blonde because everybody who isn’t happy and blonde wasn’t allowed to be born. I don’t really see things deteriorating to that state, but neither do I entirely dismiss those concerns.

But worrying about that distant future seems kinda crazy when we have a big, problematic here-and-now to deal with. To wit: 1) The tests aren’t perfect — far from it; 2) Would-be parents are taking these tests anyway; and 3) Worried about the results, these parents choose to stop the pregnancy.

I agree with William Saletan when he writes:

[M]y libertarian hackles go up when paternalists fret that genetic tests might cause undue “anxiety” in “emotionally vulnerable” couples. If you’re going to let people raise their own kids, you’d better trust them to think for themselves.

So, I’m not for restricting these tests. On the other hand, purveyors of the tests are way too sanguine about information being value-neutral. Pro-lifers have a legitimate worry, and the rest of us should think about it: In ways that are not entirely rational, genetic tests can shift a couple’s presumption from continuing a pregnancy to aborting it.

A positive test result for Fragile X, I think, is clearer than most: You don’t see that the baby might have the disorder. You literally see that the X chromosome is damaged. But even then, Fragile X manifests itself in a wide variety of ways. Developmental delays can be light or quite severe. You won’t know until you have the baby. And most people, let’s face it, are not going to have the baby when the test results come back positive. As George Will points out in a moving article about his son, eighty-five percent of women have abortions when they find out their unborn baby has the Down syndrome chromosome. I wouldn’t be surprised if the percentages were the same for Fragile X.

I am torn. I am pro-choice enough to find it distasteful that society should say to a woman, “You must have that baby.” (I certainly wouldn’t have said that to my wife.) But I also do not think abortion is a morally neutral act, a mere medical procedure — and I think it’s an option that people these days are a little too quick to fall back on. The problem is that having a special-needs child is viewed as some kind of endless nightmare. And sometimes, I suppose, it is. But most times it is not. Sonny has given us his share of frustration, but most of the time he is a delight: Cheerful, enthusiastic, loving, sensitive to those around him. I don’t regret his existence.

George Will, in the above article, seems to fall on the side of not informing parents that their child may have Down Syndrome. I am firmly with William Saletan that this is crazy: Hiding important facts from expectant parents is not the way to go. What does need to change in this country is the view that a less-than-perfectly-normal child automatically puts you in the middle of some kind of Stephen King horror story. Parents of special needs kids need to be supported by the community, not pitied. And when those special needs kids become adults, they, too, need active support — more than just warehousing and group homes. And while we’re at it, let’s streamline American health care and the horrendous tangle of insurance company red tape to make it easier to get these kids, and adults, the treatment they need.

And, of course, in the case of Fragile X, the whole question as to whether or not to keep the baby becomes moot if we could just cure the genetic disorder entirely.

Okay? Get on that.

Is It Friday Yet?

October 29, 2008

Sonny’s next appointment with his child psychiatrist is Friday afternoon, and I know I speak for everyone in a fifty-mile radius when I say that this cannot come soon enough. The boy is out of control. I grant you, he is out of control with happiness, which I suppose is the best possible option, emotionally. Whenever I feel like shaking my fists at the sky, I imagine what it would be like if he was out of control with sadness, curled up in a ball in his bed, unwilling to do anything but cry. Or what if it was anger? What if the pets ran for cover whenever they saw him coming? What if it was too dangerous for him and his sister to play together?

Yeah, given the choices, I’ll take his exhausting brand of pure giddiness.

But, jeez, he’s like a wind-up toy that never runs out of spring. Yesterday the wife had an evening shift at her part-time job, so the kids were mine. We went to the mall after school, and it was all I could do to keep Sonny rounded up. He kept wanting to sprint off to God-knows-where. I thought I was being the best dad in the world by taking him to the arcade where they have the kiddie bowling alleys, but he had no interest in bowling — he was doing it only because Daddy was forcing him. (Although he was darn pleased with himself when he got a strike.) He kept trying to leave the alley. He wanted to play air hockey. He wanted to play Skee-Ball. He wanted to be anywhere but where he was.

So finally we bowled our last frame and the game was over, and Sonny yelled “HOCKEY! HOCKEY!”, so we went over and I swiped my card. (When I was a kid, arcades took quarters. By the time I was in college, they had all converted to tokens. Now you have to keep a special ATM card in your wallet.) The very moment I swiped my card and started the game, Sonny ceased caring about air hockey, the game he’d been talking about non-stop for almost an hour. He ran off to some other machines. He was still in sight, so I played hockey with Peanut while twisting my neck like an owl every three seconds to try to keep Sonny in view.

We went back home, and to look at him, you wouldn’t have thought Sonny had just spent the last ninety minutes running himself ragged. He and Peanut jumped around the living room, shrieking. I put on a movie to calm them down. It didn’t work. I tried reading to Sonny but that meant he had to sit on the sofa for five consecutive minutes, and that was not happening.

But I’ll say this for the kid: No matter how hyper he gets, when 7:00 p.m. rolls around, he announces it loud and clear: “Time for bed! Tuck me in!” He goes running for his bedroom. He’s still shaking with giddiness, kicking his legs, laughing like a nut. You’d think a kid in this state would want to wring every minute out of the day. But I put the covers over Sonny and kiss him goodnight. Ten minutes later he is dead to the world. Too bad Peanut’s agreed-upon bedtime is still forty-five minutes away, because I could easily go to bed right now myself.

Friday we are getting this kid NEW DRUGS. Up to and including sodium pentothal.

Too Much Information

October 28, 2008

Because we cannot really ask Sonny what he did that day in school and expect to get a straight answer, we have long requested that his teachers send us a daily e-mail, giving us a few details about the day. This way when Sonny says, “I WENT BOWLING AND KNOCKED DOWN THE PINS!”, we’ll have some idea whether or not he’s telling the truth.

(He used to have an obsession with bowling, and so naturally when he shouted the above after coming home from school, we assumed he was making things up. But then it turned out they were “bowling” in gym class, with a plastic ball and pins, so in fact he was absolutely correct, which made our weary, “No, you didn’t, Sonny. Stop saying that!” seem particularly stupid.)

Anyway, yesterday his teacher sent the following e-mail:

This morning there was a laser show in the cafeteria.  The lights are off and the music is loud as the laser lights are shown on a screen in front of the room.  The entire school was there.  Sonny was enjoying every minute of it.  He loved the lights and was very excited by it.

He also had a bowel movement this afternoon.

I wrote back:

I assume you mean “a bowel movement when he shouldn’t have had one,” but no soiled clothes were sent home…

To which she replied:

Actually he did have the bowel movement in the right place.  It is not usual for him to have one during the day so I thought you would want to know.

With some of Sonny’s past teachers, we had to continually beg and plead for e-mails — we were lucky to get them two days a week. This new teacher doesn’t send them every day, but she’s pretty good about it. In fact, I’m starting to think we may have trained this woman a little too well.

Encouraging and Sweet

October 24, 2008

Two words to describe this profile of an adult Fragile X patient and the group home where he lives.

Back on Tuesday

October 24, 2008

I’m busy and/or traveling until Tuesday. Have a great weekend.

Feeling a Little Pissy

October 23, 2008

Some days a guy can’t help it: He has to talk about urine.

Whoa! Hey! Where is everybody going? …all right, I understand, see you tomorrow.

I don’t want to dive into this particular subject, you understand, but discussing Sonny honestly means talking every once in a while about potty training. Which right now is taking giant steps backwards every single day. Which leads me to pose a question to the five of you still reading this:

WHAT THE HECK IS GOING ON? HUH? I mean, one of the most basic assumptions I’ve been running with here is that while it might be really hard to teach Sonny a particular skill, once he knows that skill, he’s not going to wake up one day and forget it. And a month ago, Sonny was potty trained. Yes, yes, he still had to wear a diaper at night, and to assure that diaper stayed dry, I had to wake him up in the middle of the night and drag him out of his bed, and get him into the bathroom. But with this system, we went WEEKS without an accident.

Weeks! We could see, right up ahead, the door marked POTTY TRAINING COMPLETE — a door, I might say, that few Fragile X parents reach this soon, or so I gather from reading various FX message boards. But we were there, preparing to knock and jiggle the doorknob. Why, we’re probably the most successful Fragile X parents in the world! We would have to write a book and share our wisdom and collect great big royalty checks!

That was then. Now I can’t remember the last time he’s had a dry overnight diaper, and it’s been two weeks easy since we’ve gotten through the day without an accident. I am left baffled and a little bit angry by what is going on. He can either control his bladder or he can’t. Right? And we know he can, because he spent a heck of a long time doing exactly that. So if he can control himself… is he doing this on purpose? He sure doesn’t act like someone who’s doing it on purpose. He gets very sad, and berates himself for a while.

I’m at a total loss on how to react when this happens. I have enough control over my emotions that I can choose a particular response, except I don’t know which one to pick. Anger? To show him this is bad? Complete neutrality, like I don’t care? My natural state, during these incidents, is mostly bewilderment, so that’s pretty much what Sonny gets. Are we going to have to let him run around naked again, sitting on a towel in the living room, watching him like a hawk for any signs of, um, precipitation? We did that for a long, long, long time — it’s how we got Sonny where he is today. Or where he was, anyway, until recently.

I’m hoping the upcoming change in medication will have an impact on this. Heaven knows our brilliant “parenting” isn’t doing much of anything.

On the other hand, looking on the bright side of things, we are not yet at the point that I have to write a blog post entitled “Feeling a Little Crappy.”

Running on Empty

October 22, 2008

Sonny is still not used to working by himself on his homework. Hates it, hates it. It takes about ten seconds before he starts calling out “I need help!” and “Daddy!” and “Come sit next to me!”

It’s a good thing I confirmed with his teacher that his homework papers no longer have to be right, because now that I am not hovering over him, his papers are a complete mess. Yesterday he faced a simple counting exercise, tallying up the number of oranges in each picture. Normally, when I’m watching over him, he puts a little hash mark through each item to be counted. Yesterday he obliterated each orange with a deep slash mark; his finished paper was covered in angry diagonal lines. And he got four out of the five problems wrong. I stayed with him while he corrected them, but by that time he was pretty far gone, scribbling randomly on the paper and then berating himself for his sloppiness, laughing and crying at almost the same time. I never know how to rein him in when he gets like this.

I had told him when he first sat down that he would earn his bicycle if he did both his homework papers. Now I was trying to figure out how to backtrack on this. I didn’t want to cave in to a temper tantrum, but I also didn’t see much point in giving him another handout when he was in a bad mood and getting worse. I wanted to get him outside and on his bicycle or skateboard, so he might cheer up a little.

Luckily, the second handout wasn’t much more than writing the letter B a bunch of times. He can do that. Not well, but he can do it. I decided to stick to my guns and make him finish the work. He scrawled them out. If you squinted your eyes just right, they definitely sort of looked like Bs. I praised him for all I was worth, and we headed outside.

There was a definite snap of autumn in the air, but Sonny wanted to wear his sandals instead of his shoes, and insisted on not wearing a jacket. And by gum, I let him get away with it. Sometimes I temporarily run out of Daddying.

Catch, The Sequel

October 21, 2008

(And in a couple of months I’ll have “Catch 3” and “Catch 4,” all the way up to…)

The special-ed profession likes to throw around the word “mastery” a lot. It’s one of those words that has come to mean whatever the person using it wants it to mean. Recently we were sent a list of goals for Sonny, including one that stated that Sonny should be able to “spell a three-letter word correctly 75% of the time.” If he could do that, they would write the word mastered next to that goal.

I stared at that for a long time, the same way you might stare at an Escher print. I couldn’t tear my eyes away from the offhand self-contradiction. Come on, people. If you can only do something right 75% of the time, YOU ARE NOT A MASTER. Even if a special-ed committee says so.

And thus: I can’t say Sonny has “mastered” catching a ball, but he’s come a long way in the last couple of months. He is often able to get his arms around a thrown beach ball or soccer ball, hugging it to his chest. Better still, he has shown he can catch a ball using only his hands. The first time he did this I decided it was luck. The second time I whooped like a lottery winner. The third time, I said, all right, this kid can catch a ball.

We have moved on to the frisbee.

He’s getting better, but it’s still rough going. Sonny can sometimes catch the frisbee, but only when my throw is absolutely dead on — he won’t take a step in any direction to get himself better situated. Still, he’s awfully proud of himself when he gets his hands on it.

As for throwing: How do you teach someone to throw a frisbee? You either know how to do it or you don’t. Sonny doesn’t. When we started, he couldn’t throw it two times in a row to the same zip code. I got a lot of exercise chasing that frisbee around the yard. Since then, he’s developed this weird overhand style, like he’s throwing a tomahawk. When it works, it’s surprisingly effective. Okay, that’s only a third of the time, but still, you better be paying attention, because if you assume he won’t be able to throw it to you, that’s exactly when you’ll look up to find a frisbee heading directly at your face.

We’ve also been working with a Trac-Ball. You know, those jai alai paddles for kids? These are impossible from across the yard. I can’t throw it accurately, and he can’t catch it even when I do, and he can’t throw it accurately, and aw just forget the whole thing. Sonny prefers to play this game indoors. In fact, I think it’s safe to say that Sonny has MASTERED the Trac-Ball, as long as I’m standing less than six inches away.