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JeffsLife


cover ALEX THE BOY: You can now place pre-orders for my second book, Alex the Boy: Episodes From a Family's Life With Autism. If you're interested, please e-mail me, and thanks!

Challenges, Challenges

There's this kid in Ned's school named Micky (not his real name). Ned reports suddenly that Micky has been what my mum used to call "waylaying" Ned at recess and claiming Ned wasn't "tough."

Has Micky done this a lot? Yes, all year. And at the end of last year, Micky also swiped a medal awarded to Ned for some school event, claiming he wanted it for his brother. Ned says Micky doesn't have a brother. (Micky backed down and nearly cried when confronted on this matter by two girls who are friends of Ned.) Micky is daring Ned to be tough. Jill, who teaches knitting in Ned's class a couple of days a week, has never liked this kid. Micky always takes a ball of yarn even though he never knits.

God knows I'm no expert on being tough. I had a fight in second grade with a guy who later became a lifelong friend (a draw). I picked a fight in third grade on the playground with a kid who was minding his own business (a draw). All through seventh grade some future candidates for work-release used to waylay me and my lifelong friend as we walked to school. All my life, I'm afraid I've run away more than stood Churchillian.

But one thing I believe, at least now as a grown-up, is that if somebody pushes and pushes and pushes, there's only going to be one result.

"Get nose to nose to him, Ned, eye to eye, get right in his grill," I say, "and whisper, 'Do you want to see how tough I am?' I'm guessing he'll back down. You're also tougher than he is, Ned. His brother isn't autistic." I wouldn't suggest this except that Ned seems to welcome this brand of advice. I assure you that's the only reason.

Next day Jill calls me at about 3 p.m. "The fight is tomorrow," she says. "Nice going, Jeff."

We never faced anything this dark and human with Alex. So I call my big brother, Lee, who as far as I know has never run away from much. Lee confabs with Ned on my cell for about 20 minutes, then Ned hands the phone back to me. "Well," Lee says to me, "Ned said he hit somebody last year, and it made him feel so bad he promised himself he'd never hit anybody again. Now he says he regrets that decision. I hope when the fight starts Ned knows when to stop."

I turn around to Ned in our living room. "Hey Ned, do you know when to stop?"

"Stop what?" Ned asks.

Lee says he stood up to a bully when he was around Ned's age "because I figured the bloody nose wouldn't hurt as much as the feeling when I was always running away. I also broke an aquarium over a kid's head in study hall in high school." A typical bully that last, Lee recalls, with the big black steel-toed boots. "The dumbbell broke his own pencil in half and threw it at me. He just wasn't leaving me alone. And after that," my brother says, "people, including some people I didn't even like, came up to me and talked to me. I started to come out of my shell a little bit then. I got invited to all the football games.

"Wish we had some time to work with him tonight," says Lee.

Jill posts the challenge question on a local parenting bulletin board; most people post back that they think this must be a hoax or a crazy mom. I talk to Ned about the fight before he falls asleep that night. I tell him about my fights (draws), because I seem to recall that can make a challenged one feel best.

"It's going to be hard," he says, half to himself. "I'm sort of looking forward to it, but I'm a little nervous. Actually, I'm standing up for a lot of other kids, too." Pause. "It's going to be hard."

"Would you like to know how it went?" Jill asks on my phone next day. "Well, they went a couple of rounds, then this kid took Ned's head and slammed it into the pavement of the playground."

Jill wants to call Micky's parents. I wonder if that would make things worse for Ned, especially since he's stood his ground already. Jill says Ned and Micky shook hands and made up. "Ned has a bandage on his nose," Jill says. "He looks tough. We'll have to take his picture." Jill has apparently decided to be what she often terms "a mom of boys" about this.

So Ned wasn't afraid, and isn't afraid. Next day, Jill returns from knitting and says that another boy stopped the fight right when Micky did that, and that all the boys agree it was a cheap shot, if not actually illegal since the fight really wasn't over yet.

"I do not want to give this kid yarn!" Jill adds.

She's right, at this point, about calling the kid's parents; I also don't think this is over with Micky. I keep wondering what somebody who'd use a wall or a sidewalk for a weapon in third grade will be doing to animals in sixth, to girls in private rooms in 12th, or to his own kids someday after he graduates.

Alex's recent challenge cropped up on the IQ portion of his psychological exam, a test and examination he takes every three years; it's one of the forms needed to open sesame on a lot of services.

He and I take seats in the office of the pretty, impossibly young doctor as she pulls out a set of blocks with patterns on each side. Alex will have to arrange the patterns on each side, using some or all of the blocks to replicate one big pattern the doctor indicates from a book. "Alex can you do this design?" The pretty and impossibly young doctor says, pointing with a pencil that has no eraser to a design that requires properly arranging four blocks. (No pencils available during this test have erasers, the doctor will later tell me, which doesn't matter much since Alex doesn't realize how to use an eraser.) "Can you do this design?"

Alex does the design.

"Can you do this one?" Another four-blocker. He does, and can. How about this one, of six blocks? He can, but not as fast. Ditto the next one, also of six blocks.

"Can you do this one?" Nine blocks. It takes a minute, but he can. And next? Yeah, well, this one takes a minute: nine blocks arranged to make a series of brightly-colored slashes and curves that even I would need a moment on. He puts two blocks together, then three, then maybe a fourth, then his pace begins to slow like a car rolling to a stop after it's run out of gas.

One block this way, one block that. No, and no again. Alex can't do it, and soon his face relaxes from firm concentration to acceptance. Except he realizes he can't do it, I think. He doesn't pitch a fit or wander off, at least immediately. His eyes flicker away. He can't do it, and he knows it. It's one thing not to be able to figure something out, but it's another to not be able to figure out how to figure something out.

"Okay, Alex," the doctor says. "Let's try something else..." and with her eraserless pencil she makes a mark on a form that will, I don't doubt, yet again open sesame on a lot of services. (February 2009)

Don't Take This the Wrong Way

Pretty soon when you open this site something will pop up on your screen that makes you feel like I often feel when I open AOL: Somebody with nothing better to do has redesigned a perfectly good site.

Fact is, I have had a lot of other things to do. Alex the Boy will probably be available for purchase by the time you read this, and that's involved a lot of e-mails and cut-and-paste and making sure my boss wasn't watching. Thanks to Jill for her book design diligence. What did I know of book design? I was going to run the whole thing off on a mimeograph machine. Alex the Boy will look slick, and I think you could do worse things with $17.

Yes, thanks to Jill, who, to be blunt, considered my site a shade short of "perfectly good."

"Your site is ugly," she's said. "Don't take this the wrong way, but your site is ugly."

I've been thinking of taking JeffsLife down. When Alex lived in an institution and even for a few years afterward, the quick immediacy of 700 words a week worked okay. A situation in his life bred a few possible decisions, and each decision bred another new situation that spawned a new tree of possible decisions, and so on. But life, as it has become for me and mine, doesn't seem to lend itself to such flowchart writing. Just ask my first publisher.

"Leave your site the way it is," readers have said, and I was tempted to. But as the pace of emergency has slowed, I feel longer pieces, posted less frequently, would work better. Another reason I hesitated to change was the feeling I've always had looking at sites that implore you to "Pardon Our Appearance!" while they hammer out a site redesign that you can just tell is far more important to them that it is to anyone else on the Internet.

Nonetheless. The essays here will be different in 2009. What a year it'll be! I'll update once every three weeks or so ("three weeks," like so many details of so many redesigns of anything throughout history, being a figure I plucked from the air just now). Gone will be much of the oldest writing, dating to back when Alex wasn't even a thought. I can't believe anybody's reading this stuff any more, though it does make me pause to think that over the past decade a few old friends have found me through writing on this site that was months old and about which I'd forgotten.

I'm aiming for grandiose: 2,000 words, personal stories, yes, but supported by an oaken framework of news items and interviews. I thought I'd start with the recent survey about how crappy autism is for parents, followed by something I found on LinkedIn about a guy in Michigan who's trying to get several families with autistic kids together for a group trip to Disneyworld. Or is it Disneyland? Which one's in Florida? I guess I'll have to start getting these details right before I start sawing the lumber for any framework.

I thank the generosity of Susan, cousin of Jill "Your Site Is Ugly" Cornfield, who gave me the redesign as a gift. I thank Susan's cousin David, who's doing all the donkey work of dynamiting my Internet presence beyond the year 1999.

JeffsLife will have buttons! Buttons for podcasts and ordering books. Buttons for writing both new and gently used. Buttons for teachers and counselors and all variety of the curious. Buttons for pictures! Of my family!

I hope those who advised me not to change the site will take the redesign the right way. And as always, it will be our company policy here at JeffsLife to try to never embarrass ourselves. We will probably fail. (December 2008)

Can Ned Read?

We've had Ned Squalls over reading. For a year or so, writing was more his speed. I taught him how to outline his little stories (which even from the start always had a beginning, a middle, and an end, as well as conflict), and informed him that even if his teachers didn't mind "creative spelling," I did. But for months, reading set him off.

"Mooooore?!?" he would moan, slamming his head into the couch cushions. "I already read today!"

"Your assignment is to read one more chapter!" Jill would say, then add quietly to me, "I don't understand. I loved to read when I was his age..."

I did, too. I recall Dick and Jane potboilers, followed sometime in Vine Street Elementary School with a lot of WWII novels by Robb White. In seventh grade, I tried to read Rise and Fall of the Third Reich, but gave up after getting stares during Parents' Open House Day. Early in high school I'd read in the back seat while mum drive us to my grandmother's. Mum applauded my reading, but I think it creeped her out to have a silent teenager three feet behind her skull at 50 miles an hour. Point is, Ned's heritage embraces reading.

"Nooooooo!" he used to wail. Concentration couldn't have been the issue: He'd spend hours rooting through Legos to build a castle, or constructing a fort of wooden blocks, manning it with little green plastic soldiers, then ramming it with a toy motorcycle.

Jill remains concerned that Ned may not be getting the basics of a third-grade education. His school has exposed him to a lot of what whackers-with-rulers might consider add-ons to education fit to be axed: dance, art, music, self-directed work time. These are important. I still can't draw or dance. I have never sung on stage, especially not after my third grade teacher trashed my musical ability. I was 26 before I held a violin. And this dad is quick to realize that a tutor in English or math is cheaper than private art or music lessons.

"You worry too much," Jill's second cousin told her over Thanksgiving. He's in his third year at Brandeis, eying law school, and wants to shoot for a Fulbright. Ask his mother about him and she'll say he just "came out that way." Wiseasses, the lot of'em.

"You worry too much," he said.

"That's my job!" Jill fires back.

Ned whips my butt at "Dogfight" and has graduated to using real glue on model kits. What else do I need to know about his education? Nonetheless I drill him on math ("You can do the four-times tables tonight, Ned, because just one of your planes shot down four of mine in our last game of 'Dogfight.'").

I also turn to an education professor whose class I often lecture in. She recently secured her certification to teach reading, and she gives me a reading/spelling test to administer to Ned. On the tests, he misspells "chewed" (chuaed), "crawl" (cral), "spoil" (spul), and "third" (thered). He doesn't recognize the words "heard," "though," "begins," "breathe," or "insects." He misses "lion," "rough," and "glowed." Among the words he misses on the fourth-grade test are "adaptation," "illustrated," and "pilot," but I don't get too wound up about those.

I report the results. "Good start," the professor says. "Make charts for each word family he missed. Give him short spelling tests using some of the family words. Have him write a few words each day on lined paper. Use some capitals and small letters. Try to teach him the rules for words he gets wrong. Practice the rules and the missed words. Review the 'ea' rule: 'When two vowels go walking, the first does the talking...'"

"Ned," we say, "do you know this rule: 'When two vowels go walking-'"

"'-the first does the talking,'" he says.

"You know that, Ned? Ned, do you know what a 'word family' is?"

Yes, and he tells us. What in hell's going on here?

Recently I've been leaning over to Jill on the bus, while Alex looks out the window (refining his own spelling of such words as "Gap," "Banana Republic," and "Liquors") and Ned has his nose in a book, as silent as if he's in the back seat riding to grandma's, and I whisper, "Has he turned a corner on reading?"

Jill says he likes the Superfudge series, and right now is reading Stuart's Cape. The Calvin and Hobbes collection that once headed all bestseller lists among college students is also a favorite. I ask him to read the WWI history pamphlet that comes with "Dogfight." He takes a stab at it, and one of the words he reads aloud correctly is "pilot." (December 2008)

Closer to It Than I Am

My floor's an obstacle course. Pants, T shirts, shoes, toys. The course even continues right outside our front door on school mornings. "Alex," I say, looking down, "bend over and get mommy her Times."

Like my mum used to say, "Bend down and pick that up, Jeffrey. You're closer to it than I am." As time goes on and my parenthood ripens, I come to believe that mum said a number of wise things (though it will be several more centuries before I'm happy being called "Jeffrey."). I am about the same age mum was when she started saying that, and I can see that I had children for the same reason everyone has ever had children: to, eventually, after years of training, not have to bend over.

"Alex, hand me that towel. Right in there. The one in the bathtub. Please." I always remember to say "please," teaching two lessons at once. Plus I like rapping out orders to my kids. My fuse grows short when I have to rap three times.

I scan the floor, overlooking what Custer termed a target-rich environment. Ned's shoes. Schoolsbags. Alex's shoes. Today's dirty socks. Books, bowls of Goldfish crackers, Alex's plastic animals. Ned's darts for the gun we bought him a week ago Sunday in a Jersey Walgreens'. The socks from two days ago. In their bedroom, the T shirts Alex dug out of the drawer while while rooting for today's T shirt are sprawled like Civil War dead in a Matthew Brady photograph. Books. Another bowl of Goldfish.

"Put the red cushion on top of the white ones. The red cushion on top of the white ones."

"Sticker!" says Alex.

"Why is the broccoli under the coffee table?" Ned wants to know.

Alex and his autism might intensify this. He likes to watch tapes in his room - considering he's usually watching "Elmopalooza," we sort of like that, too - and unmonitored in there he likes to dig through the boxes and scatter toys. The living room also suffers when he's out there. Thing with Alex is, he is starting to show clear signs of wanting to help more. He fetches the detergent from the broom closet whenever he sees we're about to do laundry; in the laundry room, he picks up all the clothes that fall to the floor as I stuff them into the front-loaders. He also seems to want to help with the dishwasher, which I thought he'd enjoy because it's a sort of puzzle.

Ned's not so bad when he gets going, either, usually picking up his spilled food from under the table after dinner, for instance, after having been asked only two or three times. Other chores remain. "Did you clean out your school bag, Ned?" Jill or I will ask. "Did you pack your swim bag for tomorrow? Did you hang up your hoody?"

No, no, and no.

"Why didn't you clean out your school bag, Ned?" one of us will ask again later. "Did you pack your swim bag for tomorrow? Why didn't you hang up your hoody?"

"I asked him to do those things hours ago," one of us will say to the other.

"Ned!" I turn to where Alex has just kicked over a bowl of Goldfish. "Alex! Careful!"

I realize that if I were enterprising I'd pick the stuff up myself and just build deep knee-bends or some other exercise, which I need, into this extravaganza. But it's easier to tell someone what to do rather than do itself (another lesson mum taught me), and obeyed orders do seem to be what the world expects from a parent.

"You may not have the TV on right now, Ned. Please."

And of course, picking stuff up myself would delay taking this to the next, better level. "Alex, could you get that me please?" I say, pointing under the dining room table where an ATM receipt has sat all week. Technically not theirs, true, but I do crap for them all the time. (November 2008)

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