You Never Know From One Moment To The Next

Two hours after Sonny brings home a behavior sheet with the not-a-good-boy box checked off (“refused to do his work today”), he sits calmly at the kitchen table and does his math homework like math has never been a problem for him. 5+4? No sweat. 6+3? 8+2? He was like, geez, people, give me some credit here, I can do this in my sleep. Then he traced letters (sloppily) and colored with crayons (insanely sloppily), and then he shouted, “I earn Lumpy Pillow!” I’m used to bad behavior at school overflowing into the evening hours, but last night was really one of his better nights. He actually went to bed a little late, because he was reading so nicely with his mom. The kid’s like a roulette wheel — I never know where to place my bet.

I’m on the road today through the weekend. Have a good one — back Tuesday.

Detecting Fragile X

Apparently, this new test will cost just a couple of bucks instead of hundreds of dollars, with results returned in a few days instead of weeks.

Here’s a question, though:

According to the article, “FSX is the most common cause of autistic behavior, however not all children with the condition have autism or an autism spectrum disorder (ASD). Roughly one-third of all FSX children exhibit some degree of autism. Approximately 2 to 6 percent of all children with autism have the fragile X gene mutation. “

If only 2 to 6 percent of autistic children have the Fragile X mutation, then how can they claim that FSX is the most common cause of autistic behvior?

The Games We Play

1) Daddy Can’t Read. I’ve found this to be an excellent way to keep Sonny’s attention, plus it gets him reading even when he says he doesn’t want to. I’ll sit with him on the sofa, reading a book aloud, but every few words, I’ll say the wrong thing. For example, last night, reading about snowplows and other winter vehicles, I claimed that special trucks spread peanut butter on the roads to make them less slippery. (And you have to admit, peanut butter would do that job supremely well.) Sonny almost kills himself laughing, and points to the word and says, “No! Sand!” And on we go from there until the next time I accidentally goof.

2) Hide and Seek. Pretty straightforward, except for a couple of problems:

a) We live in a small house, with very few decent hiding spots.

b) When my dog was a puppy, we used to play Hide and Seek with him, and the psychological damage is evident to this day. So when he realizes I’m hiding, he stands by my hiding spot, barking and crying. This makes me pretty easy to find.

c) Sonny has gotten better at hiding, but that’s not saying much. When we first started playing this game, he would “hide” by standing in plain sight in the hallway, laughing loud enough to ensure that even blind people could find him. These days, he can actually hide… for about ten seconds. If we haven’t found him by then, he leaps up and says “Here I am!” This drives Peanut crazy. “Don’t tell me! You have to hide!” she yells at him. And so we do it again, and he goes to hide, and ten seconds later:  “Here I am!” “Nooo! Stop it! Daddy, he’s not playing right!”

So here we have a game that inevitably involves a barking, howling dog and two screaming children. When my kids want to play Hide and Seek, I immediately go take three Tylenol.

3) Lumpy Pillow. Their mother is to blame for this one. I came into the living room one night to find her sitting on the children. She was saying, “These pillows are so lumpy! I have to fluff up these pillows!” It was like that urban legend where the babysitter puts the baby in the oven because she thinks it’s a roast beef. Anyway, the kids were screaming with laughter at this silliness, so now whenever I want Sonny to sit down and be serious for a few minutes, for example to do his homework, he’ll begin immediate negotiations for his reward: “I earn Lumpy Pillow!” The boy wants me to drag him to the sofa and sit on him. We have a very strange family.

Meanwhile, Child #2…

Peanut’s teacher sends us a New Year Greeting:

I am writing to you with concerns for Peanut. I will not be letting Peanut go to her guided reading group tomorrow. Mrs. P, her guided reading teacher, has spoken with me regarding Peanut’s refusal to do work during guided reading. For example, today she would not write a sentence about what animals live in the arctic. Peanut wanted to just list the animals. Peanut would not add the words “live in the arctic” to her list. She spent the next fifteen minutes making herself miserable, even crying, instead of writing. When the others were ready to read the next chapter, she cried all the more because she thought she would be left behind. I have spoken with Mrs. P about this on two other occasions and Mrs. P is worried about the other children not get the needed instruction because some of the time is spent on calming Peanut down and stopping the tears and pouting. Today I spoke with Peanut and this was what she said to me:  “If you say something I don’t like I am NOT going to listen to you!”

I think we need a conference with Peanut present. This behavior in the small group setting does not meet first grade expectations. Let me know when I can speak to you.

In some ways, Sonny is the easier child to deal with. Get his medication right and don’t push him too hard, and he’ll do whatever you ask to the best of his ability, and then go play with his trucks. Peanut is a far more complex case. Like many typical six-year-olds, she wants to be a child and she wants to be a grown-up, both at the same time. She wants her opinion to count — she demands respect. If she doesn’t want to do something (eat dinner; practice piano; write something she’s been told to write by her teacher), that’s her choice, by gum, because she knows best. And she would prefer that you didn’t give her any lip about it.

Obviously, this gets to be a problem sometimes.

Her upcoming tennis lessons are another thunderhead on the horizon. Her fantasies about what these lessons will be like are about to have a head-on collision with reality. In the past couple of weeks, we’ve had a number of conversations that go like this:

Peanut: I’m going to help the tennis teacher teach all the little kids because I already know how to play tennis.

Me: No, Peanut. You’re there to listen to the teacher just like everybody else.

Peanut: I already know how to play tennis! You hit the ball, and then the other person hits the ball, and whoever misses first, the other person gets a point!

Me: But you are there to learn, which means you are there to listen to your teacher.

Peanut: (totally doesn’t understand what I’m saying) But I already know how to play–!

(Letting her play tennis on the Wii may have been a mistake. I think she’s in for a bit of a surprise when she swings a real racquet for the first time.)

I read an article the other day that asked whether today’s children have too much self-esteem. (No link, sorry — can’t remember where I saw it.) The answer in Peanut’s case is both yes and no. Yes: She thinks she is a master at something she has never done, simply because she has no proof that she can’t do it. No: Once she realizes that the activity at hand is harder than she thought, you can see her little face fall. She’s not as big as she thought; she’s just a child. The reminder is clearly painful for her. “I don’t want to do this anymore,” she says, and closes up the piano.

Like a lot of kids, Peanut needs to learn that it takes more than fifteen seconds to become an expert at something. And just because she’s not an expert at something (reading, writing, and very soon, tennis), that’s no reason to give up or get upset or yell at your teacher. I can tell her this again and again, but I have no idea how to teach her this.

We shall pause now to allow my parents to chime in on how much Peanut is exactly like I was as a child.

Homework with Sonny

A while back Sonny’s teacher told us she would prefer Sonny to do his homework by himself. Even if he gets things wrong, that’s better than having us hovering over him, guiding his pencil. I have generally obeyed her wishes, but a couple of nights ago I couldn’t take it anymore.

He had two lesson sheets. In the first, he was given a series of images, each beginning with CL, FL, or BL. He had to write the correct digraph into each blank. Supposedly he had already done this in school — new concepts are never introduced in homework — but Sonny gave every indication of a kid who has no idea what he’s doing. It didn’t help that some of the pictures were less than clear. There was, for example, a picture of a house. Over that was a small arrow pointing to a cloud, but Sonny wrote an H in the blank. Who can blame him?

He took his first crack at that while I was still at work, and quickly got frustrated and upset. The wife let him take a break, and when I came home, I made an executive decision that Sonny wasn’t going to do this homework assignment alone, no matter what his teacher might want. I sat with him and we went over all of the pictures. No, that’s not a shirt, it’s a blouse. Yes, that’s a house, but what is the arrow pointing to? It’s a cloud. And look, that’s not a balloon, that’s… what the hell is that? It’s an outline of a man, and he has a comic strip balloon coming out of his mouth. Is that supposed to be speak? No, it has to start with BL, CL, or FL… oh! It’s blow! Jeez, no wonder Sonny was having trouble with this.

The pictures identified, Sonny had a much easier time of it. We worked on the first half together, and then I turned away from him and tried to ignore him while he did the second half by himself. He got most of them right and was a lot happier about it.

Second worksheet: He had to count dimes and pennies. The lesson sheet is very strange — they’ll show him a picture of a dime and two pennies, and then the next picture will also be a dime and two pennies. The same problem, twice in a row! And Sonny will get the first one right and the second one wrong. Nothing makes me crazier than this.

This worksheet Sonny does by himself. Heaven knows he’s been counting coins for years now, so he certainly knows what he has to do. When he’s done, I look. He has one right, and eleven wrong. I sigh, I sit, I erase everything, and we do it all again. By the end, the homework is as much mine as his — which is exactly the opposite of what his teacher requested.

Whatever. I’m fine with Sonny doing independent work wherever possible, but when he has no idea what he is doing, then what is the point of doing that homework by himself? To heck with it — I’m erasing his mistakes, I’m guiding his pencil, I’m writing in the numbers myself if I have to, so I can show him how it works. I keep going, hoping for that day when everything clicks into place, and suddenly every dime will be worth ten cents and every penny will be worth one cent, every single time. I literally cannot imagine a day when we can add nickels or quarters to these counting exercises, but I try not to think about that. One thing at a time, that’s the only way to go.

Another “Promising New Drug”

This time for adult Fragile Xers.

The Future is Now?

After yesterday’s post, a number of people asked, sensibly enough, what Sonny is interested in, wondering if that might indeed provide the key to his future. Let’s keep in mind that Sonny is eight years old, but so far the two big things occupying Sonny’s mind seem to be 1) Trucks and 2) Freaking me out by standing near the hot stove when it is on, which might be construed as an interest in cooking.

Trucks are a genuine passion. He must have fifty of them, not even counting all the books about trucks, and his allowance might as well be called the New Truck Fund. But will that be a long-term interest? It’s hard to imagine. Millions of little boys are interested in dinosaurs, but they don’t all grow up to be paleontologists.

Cooking holds more promise. His class in school cooks stuff all the time, and he really enjoys it. And there are thousands of food-related jobs he can possibly get, when the time is right. I don’t know if I can see him pounding away in the kind of restaurant described by Anthony Bourdain in Kitchen Confidential, but, hey, there’s always Pizza Hut.

In fact, Pizza Hut is mentioned in this 1990 article dug up by my wife from the New York Times archive, on the subject of mentally retarded adults in the workplace. Interestingly, it seems that companies that agree to take on such workers actually find themselves saving money:

In a program subsidized by the Department of Education, Pizza Hut hired 1,012 disabled workers in 35 states in the 12 months ending in October. Seventy-three percent were mentally retarded. In a report on the program, the company said the workers stay four to five times longer than other employees. This means a substantial saving for the company, because recruiting, hiring and training a new worker costs $600 to $1,300. Overall, the lower turnover saved the company $2.2 million.

(Emphasis mine.) I wonder if that Department of Education program from twenty years ago is still going on. (It’s got to be, right? Do government programs ever end?) And I wonder how it works, and I wonder how hard the people who run it would laugh if I called them to say I am inquiring about my son, who is eight years old.

10,000 Hours

I’ve been reading Malcolm Gladwell’s Outliers, and I’m enjoying it as much as his other two books. His thesis this time around is a good deal simpler than it was in either The Tipping Point or Blink: Simply put, the most successful people in America got that way because of luck and hard work. That may not sound like the most original idea in the world, but Gladwell has a way of drilling down into the specifics that is nothing short of riveting.

We have a tendency to believe that genius is largely a genetic gift — either you got it or you don’t, and if you don’t, there’s nothing you can do about it. Gladwell argues the exact opposite: That while a given person might have a natural talent for playing the piano, or shooting a basketball, or programming a computer, each and every one of those “geniuses” has to practice endlessly in order to develop that innate talent. How long must they practice? The number that’s getting bandied about is ten thousand hours. Practice something, anything, for ten thousand hours and people will think you’re a gifted natural at it.

It didn’t take long for me to wonder how this theory might apply to Sonny.

I was raised to believe that I could become anything I wanted. Only in the past few years have I come to realize what an incredible luxury this was. Not everybody is granted the ability to choose one’s own path in life. But I was raised that way, and most of the people I know were raised this way, and it seems only natural that I would raise my children in the same manner. My job, I thought, is to prepare my children for adulthood the best that I can — not to decide what they will become as adults.

Somehow it never quite pierced my skull that having a mentally retarded child dramatically changes this. Can I really leave Sonny’s destiny up to Sonny himself? It seems crazy to think so. He’s not going to have the educational advantages that I had. Doors that will be open to everybody else will be closed to him. We can’t just send him to school for a dozen years, let him learn stuff “the best he can” and then hope everything works out after that. Dammit, I don’t want him to be the guy collecting shopping carts at Wal-Mart.

How do we avoid this fate? We avoid it by teaching Sonny a skill. And we teach it to him now — or anyway, soon — so that he can get cracking on those ten thousand hours. I don’t think those many hours of practice will make him a genius at whatever it is he’s practicing, but it may make him a viable part of the marketplace for that particular skill.

The only problem is: What skill should that be? I don’t have the slightest, foggiest idea. Something physical, surely. We’re not going to teach him double-entry bookkeeping. But what? I hardly know how to do anything myself. Am I going to teach Sonny woodworking? Hanging a picture on a wall is, for me, a half-hour operation. Something outdoorsy, maybe, like gardening? We had a backyard garden this past summer. The crop consisted of exactly one scrawny pumpkin. How have I managed to reach this very middle age without accruing any practical knowledge I might pass on to the next generation?

You’re probably asking — wait, how old is Sonny again? And, okay, he’s eight. Yes, I’m totally insane. Except, honestly, I don’t think I am. I think Sonny’s particular set of problems forces us to start thinking about this now, so that by the time he’s, say, twelve years old, we have something resembling a plan… something that he can build on for the rest of his life.

Welcome to 2009!

Slightly belated happy new year! It feels like I haven’t written here in months. Let’s take a step back and see where things stand.

- Sonny has been in good spirits, though he continues to chomp down on his hand with the abandon of Henry VIII eating a turkey leg, and his mother and I have really had quite enough of the howling. All in all, he is neither at the top of his game nor at his lowest point.

- His mom and dad, on the other hand, are not very bright. You know what we did? We made his most recent psychiatrist appointment for January 2nd. At that point, he hadn’t been in school for a solid two weeks, so what were we supposed to talk about? Furthermore, if we had made the appointment two days earlier, the cost would have been picked up by my insurance. But, nope, we had to wait until just after my huge deductible reset itself. Brilliant move, Watson.

- This past weekend we had a late celebration of Chanukah at my parents’ house. The adults in the family really went to town buying presents for the kids. Peanut opened up one gift, saw it was clothing, and turned on her heel like it was a carton full of goat entrails. Making up for that completely wasted gift-giving opportunity were several dress-up-the-figurines-in-princess-clothing playsets, each of which contains half a million individual pieces measuring one inch or less.

- Sonny received a number of puzzles exactly of the sort he works on in school. He also received a balance board that I thought he would hate, but so far he can’t get enough of it. It’s two rubber balls embedded into a surfboard of hard plastic — you’re supposed to stand on the surfboard and then bounce around the room on the rubber balls, while holding on to an elastic strap. We’re not up to the “bouncing” part. We’re up to the “standing and trying not to fall” part. Sonny’s doing pretty well at this, as long as we are holding his hands.

- I will point out, however, that when you attach a strong elastic rubber band to a board of hard plastic, there are any number of ways to accidentally hurt yourself with the resulting product. We’ve discovered several so far.

Now the holidays are officially over. I’m back at work. The kids are back on their various school buses. The living room, which was clean (more or less) five days ago, has been overwhelmed by an explosion of new toy cartons and the half-million plastic costume pieces for Peanut’s princess mermaid fairy dolls. Life, in short, has settled back into its routine. I hope to start updating this blog again every weekday, and maybe increase my readership from twenty-five people all the way up to thirty. I know, it’s crazy talk. But at the beginning of a new year, anything and everything seems possible.