Then it shall to the barber's ...

For the benefit (questionable) of out of town friends who missed what started as No-Shave November and then lasted through Christmas, some pictures.

Here's how Julie saw it:

Here's what I saw in the mirror:

Here are some fun Hamlet quotes about beards:
                       
Slanders, sir; for the satirical rogue says here that old
men have grey beards; that their faces are wrinkled; their
eyes purging thick amber and plum-tree gum; and that they
have a plentiful lack of wit, together with most weak hams.
All which, sir, though I most powerfully and potently
believe, yet I hold it not honesty to have it thus set down;
for you yourself, sir, shall grow old as I am if, if like a crab,
you could go backward.
(Hamlet pretending to read what a "satirical rogue" says of old men
for Polonius,  2.2)
     

                            *     *     *     *

You are welcome, masters; welcome, all. I am glad to see
thee well. Welcome, good friends. O, my old friend, why,
thy face is valanced since I saw thee last. Com'st thou to
beard me in Denmark? 

(Hamlet greeting the Players in 2.2)

                            *     *     *     *

Polonius:

This is too long.

Hamlet: 

It shall to the barber's, with your beard. Prithee say on. 

He's for a jig or a tale of bawdry, or he sleeps. Say on;  

come to Hecuba.

(Polonius complaining of the length of the Player's speech, in 2.2)

                            *     *     *     *

I lasted from November 4 until December 28, when I went in to my barber for a hot shave. Good stuff. Now I'm clean, Julie says I look 16, and Megan is mad that it's gone and is hoping I grow it back. Maybe next year.

The world spins

When I started this blog last year, I was reading Colum McCann's Let the Great World Spin, a novel that puts Philippe Petit's August 7, 1974 tightrope walk between the World Trade Center towers at the center of a network of stories. The book won the 2009 National Book Award.

I decided to teach it in my senior American Literature course this fall. I finished the book again tonight. Here's a passage from near the end that I think gets something of what I really like about the novel:

Little else to distract attention from the evening, just a clock, in a time not too distant from the present time, yet a time not too distant from the past, the unaccountable unfolding of consequence into tomorrow's time, the simple things, the grain of bedwood alive in the light, the slight argument of dark still left in the old woman's hair, the ray of moisture on the plastic lifebag, the curl of the braided flower petal, the chipped edge of a photo frame, the rim of a mug, the mark of a stray tea line along its edge, a crossword puzzle sitting unfinished, the yellow of a pencil dangling over the edge of the table, one end sharpened, the eraser in midair. Fragments of a human order. ... She puts her hands on the windowsill. She parts the curtains a little more, opens the triangle, lifts the window frame minutely, feels the curl of breeze on her skin: the ash, the dust, the light now pressing the dark out of things. We stumble on, now, we drain the light from the dark, to make it last. She lifts the window higher. Sounds outside, growing clearer in the silence, traffic at first, machine hum, cranework, playgrounds, children, the tree branches down on the avenue slapping each other around. ...

The world spins. We stumble on. It is enough.

On the spectrum

We took James to a follow-up visit at the Knights of Columbus Developemental Center at Cardinal Glennon on Friday morning. We have wondered for a few years now if James is on the autism spectrum, and our pediatrician recommended this clinic as a good place to go for an evaluation.

At the end of the meeting (lots of questions, a medical evaluation, and a monitored play session; the first round last month was a speech and an occupational therapy evaluation), the doctor and the pediatric psychologist confirmed what we suspected: that James is on the autism spectrum.

What does this mean? Our opening position is that it means we have a term for the behaviors we are already familiar with in James: slow language development, low social awareness, self-stimulating behaviors. Nothing is really new here except that we have a formal diagnosis.

Where is James on the spectrum? We forgot to ask, actually. But the group seemed encouraged by the progress James has been making with various therapies, as have we—so again, not much really new there. And they did note that, developmentally, James is still very young, and so it is somewhat difficult to say for certain what's to come, or what parts of the evaluation are affected by developmental age rather than disorder.

The good news is that autism is where the money is these days—research, therapies, insurance. Missouri just passed an autism bill that requires insurance companies to pay for therapies, though I fear that our insurance will be exempt because it's a non-profit (even though Down syndrome is a medical diagnosis, we've been turned down repeatedly for therapies because they're not "medically necessary"). So it may be helpful down that road as far as school therapies or interventions go to have that dual diagnosis if we think we need it.

Megan's Big Adventure

We got a call from St. Louis Gym Centre last night at 6:15—as soon as I saw the number pop up I knew it was bad news. "Megan is doing okay, and her coaches are with her," said the woman calling, "but we think she has broken her arm."

When I got to the gym, Megan was sitting with one of her coaches and a guy who apparently helps out sometimes; they had made a crude splint out of a Seventeen magazine and some Ace bandages (a kind of gymnastics MacGuyver trick, I guess. Also, after flipping through the magazine a little in the ER, I hope that's the closest she ever gets to Seventeen).

Aside from the occasional whimper or wince, Megan was pretty stoic about the trip to the ER and checking in. When the ER doctor came in and took the makeshift splint off, this is what we saw:

Wow. The doctor looked at me and said, "I can't believe this child isn't screaming." Agreed. And same goes for her dad.

So, they decided to put in an IV line so they could give her some medicine for pain and have it in in case they needed to put her to sleep to set the arm. Though she hated having the IV put in, which she ranked up there with the actual breaking of the arm, she was pretty proud of it once it was set.

 As you can see, she was still managing to smile with a broken arm.

She had a 35 degree break in both bones in her forearm, right in the middle. The doctors called it a "green split," like when you break a green branch and it splits but doesn't separate. That was lucky, since it meant she didn't need surgery for a plate or rod to set the bones back in place.

After the pediatric orthopedist set the arm and put it in a temporary cast, we waited for Megan to wake up. When she did, she saw double for a little while—at one point, she said, "Whoa—daddy, you have four ears and four eyes and two noses and two mouths!" And when I started to explain it was part of the medicine, she said, "It's like you're talking out of your chin! This is crazy!" and then she went back to sleep for a little bit.

Finally, after a popsicle and some paperwork, she was ready to go—it was 11:30. Notice that she's still managing to smile.

The ER doctor told her that she wished that all the children who came in with broken bones could see how brave Megan had been. Agreed.

Halloween, 2010

A few weeks late, but at least it's still 2010.

Words!

James has really started signing and communicating lately—you kind of have to know what to look for, or how to prompt him, but it's clear that he's starting to get the idea of words. His receptive language has always been ahead of his expressive language, but his picture system of making choices about foods and activities and the Learning Program pictures (though we're erratic about doing it) seem to be bearing fruit.

Below is an embedded file of James's words—for now, I'm having a hard time attaching the .pdf file. You can magnify the text using the controls. It's a little clumsy I think, but it will work for now.

And you can add to the list the sign for "baby," which he did for the first time this afternoon when we were doing the Learning Program cards—he was very excited. The sign for "baby" is to cradle an imaginary baby in your arms and rock them back and forth; James joined his fingers and swung his arms back and forth.

Four!

James is 4 today! I'm barely slipping this post in—it's been a crazy day. But I did see James for his birthday eggs. After that—parent-teacher conferences from 2-5 then 6-8, then up to the Prep News, where we've got a full 12-page issue this week. As I type this, we have four pages finished. (For those who haven't found it, by the way, the link is here.)

I had a longer post in mind, but here's the outline: just before James's first birthday, he started sitting up on his own, and Julie got him to eat cake; just before his third birthday last year, he started walking; in the weeks leading up to his birthday this year, he has started communicating much more regularly with signing and a picture system that allows him to make choices about things like food, toys, etc. More specifics to follow.

Happy birthday little buddy!

Odds, or, what you wish for

We still have a letter in James's file from our July 2006 visit to the genetic counselor when Julie was pregnant with him. We had had a minor blip on a 20-week ultrasound, then a second minor blip on the follow-up perinatal ultrasound. But after some more blood work and a meeting, we got our 2 1/2 page letter, which said in the Summary and Results section at the end:

"Your quad screen gave you a risk of 1 in 2,614 that your baby would have Down syndrome."

I remember e-mailing a colleague of mine around that time about a book I was reading, a Philip Roth novel called "American Pastoral," a gut punch of a book about the American dream going horribly wrong for a man and his family in post-World War II New Jersey. I remember telling her that, reading the book and worrying about the ultrasounds and test results, I was hoping hard that we wouldn't be the "1" in the odds—that even though I usually wanted my kids to stand out, to be exceptional, that this time I was hoping to be just like the other 2,613 cases where everything was "normal."

That's how I was thinking before James. This time around, we knew going in that the risk for another child with Down syndrome was 1 in 100.

We had a perinatal ultrasound in early August, standard this time around because of Julie's age and James, and met with another genetic counselor. I remember asking her how many families she had seen with two children with Down syndrome in her career—she said one, in 17 years.

A few weeks later, the word came back that our odds were 1 in 1,300. We first heard that in a phone call from the counselor we had met with—she was very excited to deliver the good news, since from her perspective the odds had decreased by a huge number. Of course, from our perspective, that meant that they were double what they had been in July 2007 with James—which we noted with wry laughter.

Another test on the blood, though, kicked out another number, this one dated September 2: 1 in 3,500. Still, if we learned anything last time, we learned that the numbers don't really matter, and that none of us would know what we were talking about until the baby arrived and let us know itself.

By the time our 20-week ultrasound rolled around on October 1, I wasn't thinking about odds very much any more, but I knew that 20 weeks was where our worries started last time, and that I'd be hoping we wouldn't see another little thing like the thing we had seen then. My friend Tim asked me at work the day before the ultrasound if we were nervous, and I said that we hadn't been (or I hadn't been, anyway), but that I thought I'd start sweating it pretty good when we actually got into the waiting room.

A funny thing happened at the ultrasound, though. I found that, even while I was holding my breath to see if they'd find chorid plexus cysts, or an echogenic foci, I was having another series of thoughts: what was I wishing for? A healthy baby, of course, just like with the other three. But I also knew that I was wishing again not to be the "1," though I wasn't saying that directly. I was wishing that the baby wouldn't be James. When the genetic counselor was calling with her happy news, she figured it was happy news because the baby wouldn't be James.

I'm certainly not saying that I, or the genetic counselor, was doing something wrong or insensitive. I think we were both—parent and scientist—having pretty normal, understandable thoughts. But I started to realize that I had never really questioned the implications of those "normal" thoughts before.

I have been thinking that we don't really know how to deal with the idea of the "1" when it's still an abstraction. And in the abstract, it seems like it would be better if things went one way rather than another. It certainly seems like it would be easier some days when James is pulling hair or has just thrown his bowl of pasta across the room, or when we start to worry about his life too far into the future.

But of course it doesn't really matter what we want—we're going to get what we get and not throw a fit, as the kids like to say. And when I was sitting in the ultrasound room and looking at the little person on the screen, it wasn't a "1 in x"—it was just a one, whoever he or she is going to be, just like James, and Luke, and Megan. I felt kind of bad for hoping that this one is some other bigger, safer number. Well, that's not quite right—I felt like I didn't need to worry so much, that I could let it go, that there is a new normal I'm learning, and will probably always be learning—and James is the one I have to thank for that.

Play ball!

James has been doing great lately—he has made noticeable strides in how he interacts with the people around him. He loves playing repetition games—he'll come up and swing-clap and then when you copy him do three little dainty claps and giggle when you copy that too. He likes to fly; he'll come up to me and pull on my leg until I ask him if he wants to fly, and then he'll try to make an "f" sound (it sounds more like blowing, or, sometimes, a soft "p" sound), and when he gets it I'll fly him in the air. A few weeks ago at cousin Beau's birthday party at Drace Park, he made a beeline for the playground, but he didn't just want to do the swings. Instead, he was climbing all over the different equipment and making his way down various slides by himself. There has been an independence and a deliberateness about his play lately that seems to be a step forward—small, but a step nonetheless.

Language has been coming a little bit too. He started signing "car" a little bit ago (it's one of his favorite cards in the Learning Program, and he loves to go sit in the back seat of cars, especially but not limited to Grandma's). At school he's apparently been having lots of success pointing to pictures of what he wants. At home he's more consistent with asking for more by signing, or signing for water. And lately, he's been emphatically asking for ball, as you can see by the video below.

Little gymnast

Megan got her new team uniform and warm up last week. As you can see from the pictures above and video below, she's pretty proud. Although she's not always wearing her uniform, the floor routine in the video gives you a pretty good idea of what Megan is doing most of the time she's in the house—including talking while upside down.

Spellbound

Luke participated in a Macy's spelling bee a few weeks ago. Below is video from the event. We got a kick out of how he asked for a definition or to repeat the word. He did really great—Julie thought there were about 35 8- to 10-year-olds there, and Luke was 7th-to-last out. When the bell dings him you can see the flicker of Luke heartbreak cross his face, but he held it together and even wanted to stay to see who won. He's already talking about next year.

The Missey gene

Luke did the dishes tonight—unprompted, and with palpable delight. No humming "Amazing Grace," as of yet.

If he seems to show aptitude for this during the year, we're thinking of sending him to Pa Pa's Tidy Camp—held not actually at Pa Pa's house (it would make a mess), but at a neutral site.

Love Story

This documentary won Best Documentary Feature at the Tribeca Film Festival in New York and drew some praise from Robert DeNiro, apparently. It's called Monica & David and it's about two people with Down syndrome who fall in love and get married. It's going to premiere on HBO on October 14 at 7 p.m. (central time).

Catastrophe

We're reading E.B. White's "The Trumpet of the Swan" right now—one of my all-time childhood favorites. I vividly remember being nestled in with Mark and Mom in the pull-out part of the trundle bed, listening with delight to Louis's adventures.

Last night we got to the part where Sam Beaver takes Louis to first grade to learn how to spell on a chalk board. After Louis copies a "C" and then "C-A-T" with ease, Mrs. Hammerbotham decides to try a harder word, so she spells "catastrophe."

I thought I'd ask Megan if she knew what catastrophe meant.

Me: "Have you ever heard that word, Megan?"
Megan: "I think so."
Me: "Do you have a guess about what it means?"
Megan: (hesitating) Ummm...
Luke: (giggling) "I know something that's a catastrophe."
Me: "Oh yeah? What's that, buddy?"
Luke: "Our house is a catastrophe." (hysterical laughing)

Yep.

What do you see?

Sweet brothers, giggling at me.

Buttons

James loves cause and effect toys, especially ones that play music. While Tim and Karen and Amanda were staying at my parents' house, James would charge in through the garage door and barrel through the kitchen like a Heisman-candidate tailback—his end zone being Amanda's musical jungle toy in the living room.

To capitalize on this preference, we have a touch screen hooked up to our computer that we got through an assisstive technology grant. You can download games for it that encourage interactive play. His favorite up until now has been one that requires him to touch the screen to present part of a picture (like a bus), touch it again to complete the picture, and touch it a third time to make it move and play music. He can touch anywhere on the screen, and he'd gotten good and sort of fast-pounding the screen three times to get to the music and movement.

If you can see the video, you'll see that he learned a pretty cool variation on this today. You can also choose to have switches, so that instead of touching anywhere on the screen, he had to press a little "switch" image on the left hand corner to make a picture appear, then press another little switch image on the right hand corner to make it animate.

There are 21 images in the set; by the end of the first set, he had gone from needing hand over hand, to needing just a touch at his elbow, to needing a verbal prompt of "Look" from me so he'd see the switch, to no prompt at all. He did another two or three sets all by himself—I even left the room a couple of times while on the phone. Yay James!

Notice his little pointer in the video!

Welcome to Holland

I enjoyed this World Cup more than any other I can remember. I don't know much about soccer, but there was some big-time drama. I watched the U.S. goal to beat Algeria on streaming video on my laptop while the seventh graders in my class did a worksheet, then went nuts and turned on the room t.v. for the replay. (And later that night, I replayed the second half to Luke and Megan and their cousins Harrison and Celia—who went as crazy bonkers as I've ever seen any of them go when the U.S. scored—they jumped around and screamed and hugged each other.) The Uruguay - Ghana game was incredible at the end. The Netherlands' two-header goal to beat Brazil was amazing.

But I think a lot of my enjoyment came from our little family. Before play began, we sat down with a list of the groups and each picked a team to follow in addition to the U.S. Since none of us paid any attention to the run-up to the Cup, we were choosing blindly. I chose France (if you are a soccer fan, you're disgusted; but if you also know me, then you know I had no idea of France's way into the tournament, and I was as happy as anyone once I did discover it to see France exit). Julie chose Italy, but only because Megan had chosen who Julie would have chosen: Spain. And Luke chose Brazil.

A few games in, we all realized that we hadn't chosen a team for James. Luke thought maybe New Zealand, since it's surrounded by water and James loves water. I had just read an article in the New York Times Magazine about the Dutch Ajax system. And what country is more watery than the Netherlands? So James's team became the Netherlands.

Not too shabby for a family choosing randomly. James's team beat Luke's team, which Luke took well, even though he'd been saying with absolute confidence up until that point that Brazil would win the whole tournament. (He's looking forward to 2014, when Brazil is host. I'm not; he'll be going into sixth grade.)

We went to a friend's house to watch the final. Luke, James, and I all cheered for the Netherlands, while Megan, Julie, and everyone else there rooted for Spain, who were clearly the better side and deserved the win.

It wasn't until today that, through some random chain of thought I can't retrace now, I remembered one of the very first things one of the nurses brought to our room after James was born. It's a little sentimental, but it's also pretty true. Rembrandts, windmills, tulips—and water. Lovely indeed.



WELCOME TO HOLLAND
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

© 1987, by Emily Perl Kingsley. All rights reserved. Reprinted with permission of the author.

More on the R Word

This video was linked into this week's DSAGSL e-blast (which you can subscribe to by clicking here.) It's a documentary put together by a group in Minnesota after a theater group there put on a production called "Celebretards."

It's pretty amazing watching different people trying to explain their interpretation of the word to someone with a developmental disability. Also some good (if very quick) historical context and images.

Holidays

One of the things that swayed us to choose the Greenbriar house back when we were moving was the then-pending opening of Montfort Park at the eastern end of our block. We heard from people that there were lots of neighborhood events, especially for kids, and we thought that would make our transition to the suburbs feel less strange and new, since we spent a lot of time at Tilles Park a few blocks from our house on Pernod.

Most of me says that the events we've been to at the park have been wonderful. Luke and Megan have certainly had a great time hunting Easter eggs there, riding in the 4th of July bike parades, and racing around the playground with their new friends at the frequent hot dog cookouts there (Memorial Day, Labor Day, middle of summer, etc.). And we all love the park just as part of our daily options. It's the first place that motivated James to walk—he still heads that way almost every time he comes out the front door.

Having said all that, the bigger, more public gatherings have sometimes been hard with James. This past Easter, for example. I remember feeling good because James was walking for this one, we had practiced picking up eggs and putting them in the basket in our front yard (which he loved), and the park had become a place James clearly loved. Whereas in the past he might have spent the event sitting in a stroller or on the ground, sort of motionless and sucking on his tongue, this Easter, I thought, he'd be a step closer to being part of things. I can sometimes be a holiday grinch (ask Julie)—not because I don't like the holidays, but some part of me gets discombobulated with all the out-of-routine racing around and I start muttering. (The Misseys who read this will recognize this phenomenon.) But this past Easter, I felt pretty good heading out the door.

Unfortunately, that lasted about ten seconds. Whether it was the weather or what he ate or some kind of stimulation, James started in on one of his moaning spells. If you've been around him when he does this, it's fairly maddening. He sticks his hand in his mouth, and he moans. Maybe he's hungry, maybe he's thirsty, maybe there's something stuck in his teeth, maybe his teeth hurt, maybe he just likes the feel of his vocal chords vibrating. We have no idea. But when he starts, you never know when he's going to stop, and we don't have a trick that works consistently.

By the time we got to the park, he was a moaning, slobbery-handed mess. He didn't want to do anything but sit on the ground, hand in mouth, moaning. As the ground was damp, pretty soon he was soggy-pantsed to boot. When the hunt started, I had to sort of drag him over to the grass, and then he just sort of sat there while we tried to get him to do with the eggs what he had done so well and been so happy about in practice. Within five minutes of the end of the hunt, I had walked him back home, where I sat feeling some mixture of sadness and panic and self-pity and guilt.

So this is all a long introduction to why this year's 4th of July parade was so fantastic. First, no moaning—good start. Best of all, when we put James on the tricycle, he loved it. As you'll see from the video, he really liked having his feet on the pedals. As long as I kind of held one foot to the pedal and turned it, he would keep the other foot on, and you can see by his attention to it that he was really interested. You can even see him sign "More" unprompted at one point (fists tapping together), and you'll notice as it goes on that there are segments where he seems actively pushing the foot I'm not holding. You'll hear lots of "Good boy!" from Julie and me, and you can even hear the excitement from various neighbors along the way.

Finally, enjoy the sprint finish from another of our children near the end, and the—well, what's the opposite of sprint finish?—from another. (In his defense, he was trying to stay with the flag-bearing Grand Marshal.)

For want of three pins ...

... my blogging has been delayed. For some reason, the MacBook Pro I have from work has a new Firewire port that doesn't accept the old 6-pin Firewire; it's now a 9-pin or something. Go figure.

Without an adaptor or a new Firewire, I'm dependent on Julie not just for photographs (her specialty), but for the use of her office (a disaster for tidy freaks like me) and her computer (ditto) to download pictures and video.

However, after an exciting day for James at our neighborhood 4th of July parade, I got motivated and ordered the adapter from the Apple Store.



I actually tried to go to the Apple Store in person, but apparently you have to have scheduled an electronic appointment to get any help, and there was a big line of electronically pre-scheduled folks waiting for their iPhones. The girl out front with her iPad was absolutely uninterested in dealing with me, an unelectronically-unscheduled real live human being. So I huffed and went home did the whole thing on-line, with no human contact whatsoever. I'm not sure who won there.

When it comes in, video from the parade!

Step Up for Down Syndrome!

Since I'm oh so fancy with e-mail and a blog, I'm posting our note about the Step Up for Down Syndrome event in Forest Park this Sunday, June 13 here as well.

One clarification (I've added it in below, but if you already read the e-mail, you might not see it: if you want to donate to James's trust, you'll need to make checks out to "The James Missey Special Needs Trust."




Hi everyone,

As you all know, the Step Up for Down Syndrome event in Forest Park (formerly the Buddy Walk) is the annual fundraiser for the Down Syndrome Association of Greater St. Louis. You all, and many of our friends, have helped us raise a little over $12,000 in the three years that we've put together a team for this event and raised money.

This year, we're going to try something a little different. Some of you have asked us since James was born if you could contribute directly to James. We have been working on planning for James's long-term needs for a while now; last year, we set up a special needs trust for James to begin to prepare for his future. Though James will likely continue to have many needs through his school years—therapies and camps especially, and we're crossing our fingers no more medical—the majority of his financial needs will come long after school is finished. As with all of our children, we can't predict what James's future will hold, but down the road we'll have to consider how independently James can live, or what his future care will be into his 40s and beyond, when Julie and I will be in our late 70s and 80s. Who his caregivers will be, where he will live, how his needs will be met—all of these are the long-term questions that we think about. How we will fund James's trust is an ongoing question that we're working on.

For those of you who are interested in doing so, this year instead of donating to the Down Syndrome Association of Greater St. Louis as part of Step Up for Down Syndrome (the June 13 walk in Forest Park) we are asking you to consider contributing to James's trust fund.

A special needs trust fund stipulates, among other things, that any money in the fund must be used for the individual beneficiary of the trust (in this case, James)—for education, for camps, for therapies, for medical care, for personal items (i.e. whatever thing James loves when he's 15 and wants to purchase for himself), for in-home care, for living facilities, for a traveling companion if that companion is a necessary part of a trip or visit, and so on. The special needs trust insures that James has money available to him for things he'll need without jeopardizing funds also available to him through the state.

Please know that we know this is a sensitive issue—we've wrestled with how to do this for a long time, which is partly the reason this e-mail is coming so late. We absolutely do not want anyone feeling uncomfortable about this; we know money is a sensitive issue. If donating to James's trust this year is something you are interested in, you can send the donation to us. Checks need to be made out to "The James Missey Special Needs Trust."

We have also set up a Firstgiving page, as we have in years past, if you would feel more comfortable donating to the DSAGSL. Our page is here: http://www.firstgiving.com/jamesmissey .

Of course, no donations at all are required to walk with us in Forest Park this weekend as part of the Step Up for Down Syndrome walk. The link for more specific information about times and activities is here: http://www.dsagsl.org/step-up-information/ . PLEASE NOTE THE NEW LOCATION THIS YEAR!!! It's not in the Muny Lot as it has been in years past.

As always, we're happy to have anyone walk with us, so bring along your friends and neighbors!

Finally, please know that we are so grateful for all of the support that has come from all of you in so many different ways. We feel blessed to know that we and James are so loved, and we know that James has lots and lots of "trustees" in his life to count on.

Thank you!

Steve and Julie

Pairs

Julie took James to the second Learning Program meeting Saturday morning. We've been doing it with him regularly, and we've noticed that his attention is getting better—he's giving us better and more consistent visual attention to the cards. I'll try to post a little video soon of what we do when we do this at home.

Yesterday he was really doing great. One of the people doing this pilot program is Tina, his First Steps occupational therapist whom we loved (and miss dearly). She was raving about how much better his attention is getting. Julie was really excited about two things in particular.

The kids were working with some coloring book-like cutouts of a mom, a dad, and a baby. For each cutout, there was a box with the same picture on it. When James sat down in front of the box with the picture of a dad on it, he immediately started signing "dad"—pretty amazing, since it was an abstract dad and not me.

Second, James was very consistent about matching the dad cutout to the dad box and the baby cutout to the baby box—again, something we haven't seen before. Julie came home really excited about the program.

I was talking with my old friend Andy Craig last week, and when Andy asked me how James was doing, I was getting ready to start talking about how frustratingly slow some parts of James's development have been—language in particular.

But I realized that Andy hasn't seen James since last May, and I started thinking about how far he's come since then—I was remembering how, early last summer, James would start crying every time he saw Julie from the Belle Center show up at our house because he knew she was going to work him. I remember one day in particular when Julie and I tried to get James to go to the park at the end of our street in his walker, and he dragged his feet and screamed the whole way, screamed at the park (even on the swing) until we left him alone, then screamed some more on the way home. Just a few weeks ago, James started walking up the steps at the park by himself—he uses the railing, but he doesn't need my hand.

So far in some ways, so achingly slow in others. I think this is the "Let Child Set Pace" reminder.

Speckled frogs and little pigs

Here's some video from James at the KECC when Julie was there for a parents' day a few weeks ago. You can see some good examples of people doing "hand over hand" assistance with James, and if you watch closely, you can see the moments when he goes from being moved by someone to moving with them.

The teacher at the board is his classroom teacher, Miss Melinda; the woman helping him with the Little Pigs song is one of the classroom aides.

KECC Update

Julie and I had two reassuring meetings this afternoon at the KECC. The first was with James's classroom teacher, Melinda, and her two helpers. At the regularly-scheduled meeting last month, we came away feeling a little discouraged after it seemed like we heard a lot about what James couldn't do without help, and Melinda, who can come across as a little brusque at times, seemed kind of frustrated about him.

So Julie set to work as only Julie can, talking to other parents and trying to figure out if James would be better off in another classroom. Along the way, she bumped into the Inclusion Specialist, Allison, one day—we hadn't known there was such a person—and that opened the way for a few good conversations that helped us clarify what exactly we were looking for and how we could best advocate for that.

After a lot of prep (again, mainly on Julie's part) we felt pretty good going in today that we had a solid, thoughtful way of approaching our concerns without making Melinda defensive. And Melinda seemed to have given the meeting some thought herself, as she seemed more patient and upbeat today about James's progress. (We actually suspect that Allison the Inclusion Specialist did a little working on both sides, but who knows.)

Melinda and the two aides told us today that James's awareness of his peers has really increased: he looks at them, sometimes goes to where kids are doing something he's interested in, and will even smile or giggle at their goings on. One of the aides told us that she intiated a game between James and another kid where they rolled a car back and forth to each other when she counted down from three and said "Go!", and James loved it and stuck with it for 10 minutes or so. They also said that James is getting better at following class routines, and said that even though he loves playing in the sand, whenever they say, "Line up, Ducks!" (since they're the Duck Room) James goes immediately over to the door to go inside.

The big thing with speech / cognition right now that they're working on is "Put on" and "Put in." Melinda enthusiastically showed us some of the toys they'd dug up for James, and in some cases modified, to help him work on this skill—as you would expect, lots of noise-making and cause-effect toys to motivate him. We also found out that he qualified for Music Therapy, which is wonderful, so he'll start receiving that before this school year finishes.

We also met with James's Discrete Trial team—the people who see him twice a week for one hour after the regular class day finishes. In the shortest possible terms, Discrete Trial is a system that breaks down actions or behaviors into their smallest parts, then builds to a desired behavior one step at a time through repetition and the careful keeping of data about what progress is being made. They've made big strides with James's throwing or sweeping things he doesn't want (especially food at meal time) away from himself, and with James trying new foods and textures.

They're also working on things like repeating gestures (patting a table, for example) and an early version of matching, where they put a cup and a Duplo block on the table in front of James, then hand him either a cup or a Duplo block and he's supposed to put what he's been given next to the match in front of him. Progress there is slow, but steady; I think they said his best day was 50%.

All in all, a good hour and a half at the KECC—we came away feeling great about James's being there. He has quite a team working for him.

The Learning Program

James is in a pilot program for something called The Learning Program. A group of kids with Down syndrome who are roughly James's age and their parents are meeting three times to test out the program and then they'll meet once a month in the fall.

The basic idea is to teach kids with Down syndrome how to read, beginning with pre-literacy kinds of activities. Julie went to an informational meeting last week, and then she and James had the first session last Saturday morning. We're learning the particulars, but I thought these guiding principles (given to us on a handy laminated card) were terrific—a good reminder for us about what James needs from us.

We each agreed right away that the first principle is our ongoing challenge. And the one about guilt is a welcome reminder too. It sounds like a great program, for James and for his parents.

Assume Your Child is Able
Research shows that one of the most important factors for learning success is a parent or teacher who believes the child is capable of learning. Your child can learn—your child will learn.

Make Learning Fun
Learning should, can, and must be fun. If learning is fun, our children will be enthusiastic and motivated to learn.

Success is Key
Our children need to feel successful in their attempts to learn. Use a positive approach for instruction!

Let Child Set Pace
Parents may become frustrated at lack of perceived growth—this is our problem, not our children's. Embrace their energy, go at their pace.

Teach . . . Don’t Test
Teach—give your child information. Resist the urge to make teaching sessions testing sessions.

Don't Let Guilt Get in the Way
Set a goal to work with your child XX minutes/week—if you reach it, great; if not, don't worry. Have a good attitude and try not to feel burdened.

Model. . . Don’t Correct
Use a positive approach by modeling correct responses. Provide feedback based on your child's effort.

How to Train Your Dragon

Luke and Megan and I went to see How to Train Your Dragon this morning—fantastic! Cousin Catie put us on to the books, and Uncle Brian has been telling us about the movie (from DreamWorks) for a while now. We saw it in 3D, hence the glasses. The 3D effects are amazing, and the story is terrific too. Luke gave it an A+++++ and Megan gave it 20 fingers and toes up.

I don't know if you can tell from the picture, but with the lenses dark in the theater Megan looked like a six-year-old Grandma Betty wearing sunglasses. I had almost as much fun watching her for the first 20 minutes as I did watching the movie.

There's a link to the trailer here.

Also, for anyone with kids, we use this website to see if we think something will be okay for Luke and Megan to see.

April is the cruellest month ...

That's from T.S. Eliot's The Wasteland—an opening that alludes to the opening of the Prologue to Chaucer's Canterbury Tales:

Whan that Aprill, with his shoures soote
The droghte of March hath perced to the roote
And bathed every veyne in swich licour,
Of which vertu engendred is the flour;
Whan Zephirus eek with his sweete breeth
Inspired hath in every holt and heeth
The tendre croppes, and the yonge sonne
Hath in the Ram his halfe cours yronne,
And smale foweles maken melodye,
That slepen al the nyght with open eye-
(So priketh hem Nature in hir corages);
Thanne longen folk to goon on pilgrimages
And palmeres for to seken straunge strondes
To ferne halwes, kowthe in sondry londes;
And specially from every shires ende
Of Engelond, to Caunterbury they wende,
The hooly blisful martir for to seke
That hem hath holpen, whan that they were seeke.

In Chaucer's poem, April is when the whole world regenerates itself after the death of winter: flowers, wind, crops, birds all return to life. And it's during this season that human beings seek spiritual regeneration as well—and hence, it's when folks long to go on pilgrimages to holy shrines like the one at Canterbury.

Eliot's poem, though, makes ironic contrast between the hope of spiritual redemption suggested by spring in an irretrievable past animated by Christian belief, and a spiritually empty modern world devoid of such belief or the animation it provides. Hence, April for Eliot is cruel because it "breed[s] lilacs out of the dead ground," not as a sign of new life, but as a cynical symbol of nature's cruelty: things are born only to die.

But mainly, April has been a cruel month for this blog, which has fallen by the wayside in the midst of beautiful weather, many family events, Easter, track practices and meets, science fairs, gymnastics practices, tee-ball practices and games, birthday parties, yard maintenance (neither Chaucer nor Eliot seem to have explored the rich symbolic potential of lawn fertilizing and mowing) etc. etc. etc. In other words, typical family stuff, but for some reason all super-concentrated this April and, judging by the calendar, May as well.

Soon I promise to have pictures and video of James at school, and updates about what he's doing with therapists. Also in the pipeline are reports about Luke's Science Fair prize and first track meets, as well as Megan's first tee-ball games. Most importantly, perhaps, will be information about this year's Buddy Walk, which has been re-named a clunkier but more awareness-specific Stepping Up for Down Syndrome event (i.e., the walk in Forest Park).

Apologies to the descendants of Geoffrey Chaucer and T.S. Eliot for this post. I thought it would give my brothers something to mock.

Ewok

I've been a little busy lately, so delinquent with new postings. I'm working on updates about James, but in the meantime, enjoy these.

Julie's latest cake creation, to add to her catalogue of achievements. Megan wanted an ewok cake—you know, those little furry creatures from "Return of the Jedi." Any guy who came of age in the '80s will be simultaneously relieved and a little bummed to know Megan didn't choose the Princess Leia in gold bikini of that film.

But I digress. Julie made this one up entirely herself—no template from the internet to work from, just the photo of the ewok you see on the left there. Megan was thrilled. Also, the chocolate icing was quite tasty. 

Puzzle

We finally got our videocamera  back with the sound fixed, so I'm hoping to post more video of what James likes to play. Unfortunately, my laptop isn't compatible with our older firewire, so I have to rely on using Julie's computer, which presents, um, some difficulties. But here's a little bit of James working on his shape puzzle.

His favorite is the rectangle, which he'll do over and over and over again, but he's getting better at the other shapes too. Please pardon Megan's grab for video attention in the middle—she found one of her creations in the recycling and was protesting.

Origami

Luke came home from school yesterday talking about the origami book his class apparently discovered at choice time yesterday. Who knows if this will become one of his obsessions, or whether it's a one-day thing, but when we were talking about it last night, it reminded me of Robert Lang (who Mark worked with at some point in California), the subject of this New Yorker profile about "the physicist who dropped everything for paper folding,"  and the artist who did the scorpion at the top of this post.

Luke and I looked at Lang's origami website (click here), which has photos of unbelievable origami and for some of them even includes links to the mind-boggling crease pattern instructions. (You can access the ones for the scorpion here.) Luke was suitably impressed—though in typical Luke fashion, he's also convinced that he can make up his own way of doing origami, since the book was so popular that kids had to wait to take turns to look at it and go over the instructions.

I'm a little ...

teapot!

Here's the (handwritten) note Julie got from one of the therapists today when she picked up James:


Mrs. Missey,
This morning while playing with James and using his tech-talk with two choices ("teapot" and "gears"), James consistently chose the teapot.

The exciting news is that the first two times James pushed "teapot" on the tech-talk and I said "teapot," James clearly repeated "teapot" as I handed it to him! The 3rd time, he didn't say it, but when I said it again, James said "pot."

As we continued to play and request many more times, James again repeated "teapot" one time. Has he ever said this before? He loves the toy and this was a very pleasant surprise!


The tech-talk she's referring to is James's super-talker which we've been bad about using consistently at home, but they're using at school—you record your voice saying different choices, have an image of what each choice is, and then James can press one side or the other to make his choice with both picture and sound. And no, he's never said "teapot." He will say a very cute "open" if you're playing with him and make the sign for open (pulling hands apart, like a reverse clap), and he likes to put his hands up in the air when you say "up" and slam them down when you say "down." And he's been signing "dad" very consistently lately, though still only when prompted.

Our videocamera is having its microphone repaired. I should have it back in about two weeks, so I'll post video then.

Carbon fasting

Passed along by someone at school, from the Diocese of Washington. Click to enlarge.

Valentine

James made some Valentines this weekend—below is some video. Unfortunately, the sound on our videocamera isn't working, so you can't hear how the drawing pad plays music whenever James draws. Nor can you quite see, in the compressed video format, how much drawing is on the paper. But while it doesn't look like much, this activity was notable for how little James tossed the crayon—he really seemed to like the drawing!

R is for Rahm

Somehow I had missed this, but saw this article referring to it on Slate.com this week: that White House Chief of Staff Rahm Emanuel has apologized for using the word "retarded" in a 2009 meeting.

Writes the author of the Slate article, Jack Shafer:

According to a press release put out over [Chief Executive of the Special Olympics Tim] Shriver's name, Emanuel has promised that "the administration would continue to look for ways to partner with us, including examining pending legislation in Congress to remove the R word from federal law." The release also reiterates the activists' ambitions to eradicate the words retard and retarded from everyday speech because they dehumanize the nation's "seven million people with intellectual disabilities."

The quest to protect the vulnerable from ridicule may be noble, but if a Slate piece from 2001 by John Cook is any guide, it's an impossible quest—and the activists know it. In thrusting public scorn on Emanuel, the activists—no matter how high-minded they might be—are guilty of craven opportunism. Emanuel may have a big mouth, but he is no bigot, no torturer of the defenseless, and the language police that swarmed and handcuffed him, Palin included, should have their badges revoked.
  
Sarah Palin apparently went after Emanuel on her blog after his use of the word was made public; I suspect that some of Shafer's attack here is motivated by that fact, which leads to the unfortunate (and I think unfair) conflation of the Chief Executive of the Special Olympics and an attention-seeking ex-governor and Vice Presidential candidate. I think a guy like Shriver has earned his "badge"—he makes his living providing opportunities for people with disabilites, unlike Shafer or Emanuel or Palin.

Much as I disagree with Shafer's argument—he thinks it's the language police who have a problem, not Emanuel—he does cite some interesting and even complicating facts from an earlier Slate piece by John Cook. The article notes that, historically, diagnostic language tends to turn into pejoratives; the words "moron," "imbecile," and "idiot" were the official diagnostic terms from 1910 until 1959, when the terms were changed to "mild," "moderate," and "severe" retardation.

I've struggled with what to do when someone says "retarded" around me since James was born. The night we brought him home, I had to run out and look for an obscure breast pump part. I ended up at Best Buy, of all places, where, when I told the checkout guy that my credit card wouldn't run unless they manually entered the numbers first, laughed, "That's retarded."

I remember thinking as I walked out of the store that I'd have to work on my comeback for the inevitable future times when someone said something similar. But it's never been that easy; different people and different contexts usually leave me sort of momentarily paralyzed and then, later, guilty that I haven't said anything. The times when I do say something, I don't usually feel any better; often I feel like the person looks at me like Shafer does Shriver or Palin, as the humorless language policeman.

I know that most people don't intend harm when they use the word. It's also easier to speak up sometimes than others: if I overhear a kid in freshman hallway say it, it's relatively easy to stop and make a point. An old friend at a baseball game, a little harder: does he know he said it? does he feel bad? should I add more discomfort to the moment and say something, or just let it slide and hope he feels bad privately and doesn't say it again? Or have I somehow failed James in that moment of paralysis?

I think I'm trying to work my way around to thinking that, if one of us is going to feel a little bad about the word having been said, it's going to be the person who said it, not me. Still, I'm inconsistent with what I do and how I feel about responding or not.

At least Emanuel apologized, unlike Ben Stiller after his "Never go full retard" character in Tropic Thunder (though DreamWorks did include a public service announcment on the director's cut DVD). Maybe diagnostic language is doomed to morph into insults, but that doesn't mean that those who do the insulting should have carte blanche.

DSA Conference March 6

This year's Down Syndrome Association conference is on March 6 at Maryville University.

The keynote speaker is an expert on the neurobiology of Down syndrome, and there are three sessions following that. Julie is actually on a panel for one of the sessions with a group of other moms who will be talking about the transition from First Steps to the school system.

We've gone to two of these conferences and found the keynote speaker fantastic both times. The sessions themselves have been mostly helpful. Julie will be there for sure (obviously), and I'll likely go. It is not just for parents. If you see any sessions that look interesting—come and spend part of the day with us!

The same, but different ...

One of my most embarrassing public moments as a parent happened at the zoo two summers ago. Most of you know the story; it's the time Megan threw an unbelievably violent tantrum at the zoo. It's also the time she discovered that my Adam's apple is my weak spot. Unfortunately for me, she discovered that weak spot while I was trying to carry her thrashing, screaming, kicking, frenzied little body out of the zoo without getting a black eye or throwing a tantrum myself. It was a long, hot march of shame from the monkey house to the parking lot, and it was made even worse as she kept jamming her forearm into my Adam's apple, causing me to choke and flinch and try to hold her at arm's length without dropping her.

In my telling and re-telling of the story, I've managed to turn it into a comic scene, complete with Megan's tearing off her shirt in the van like an English Premier League prima donna protesting a red card. But it was definitely a day where I felt seriously unsure about my qualifications as a parent, and about Megan's emotional health.

I was thinking about this story this week after Julie's experience Wednesday in the waiting room of cardiology at Children's Hospital. I won't bore you with the long story, but by the time she and James got to cardiology, it had already been a crappy day. (Though not health-wise, as James's heart looks good.)

The waiting room in cardiology was fairly crowded. A tired James walked around the room a few times, then settled in to rocking from foot to foot and shaking his head—a kind of self-stimulation, we think. And then a little girl walked by while he was sort of rocking and sticking his arms out, and he grabbed her hair and pulled it hard enough to pull her backwards onto the floor.

When we were talking about this Wednesday night, neither Julie or I could think of a time when we felt like people were looking at James in some unusual way—with pity or some other uncomfortable kind of look. We couldn't remember ever having felt awkward about being out with James before, or awkward about people noticing him. Yes, we're aware that when we're at school or church or gymnastics or wherever that people probably notice that something is different about James, but that hasn't bothered us—and really, why would it? The (fairly frequent) times someone has said "retarded" while we're in their presence—now that's a different story, for a different post. But being out in the world with James has mostly been more or less like being out there with Luke and Megan.

Julie was mortified, of course. The mother of the now-crying little girl was really nice, calmed her daughter down and brought her back over to James, showed her he was a nice boy, and so on—really good stuff. But Julie had already felt like people were looking at James differently, and the moment bummed her out, made her sad. (We also both agreed last night that the mere fact that all of this happened at Children's Hospital put it into a certain perspective pretty quickly. There are always people there who are going through things exponentially more horrible than us.) It was a moment when she was self-conscious that everyone was looking at James and her differently, and I think, or imagine anyway, that she had that feeling of the train leaving the station and you suddenly decide you don't want to be on it, but you're stuck.

But what's interesting for me to think about this story is that, in the end, I can't quite say whether Megan at the zoo and James in the waiting room are a good example of how similar or how different things are between our kids. It's always kind of both, I guess. Each us felt that sort of panicky embarrassment of being caught in public; maybe the difference lies in that it sometimes feels more difficult to have faith that James can or will grow out of what he's doing.

With Luke and Megan, we operate with the unspoken, unexamined, even unconscious assumption that their lives will have a certain arc. With James, that arc feels much more unknown, and we think more consciously about it sometimes, and that's probably not always good. We don't want any of our kids to grow up too fast; we're trying to enjoy the moments as we have them, like all parents. And the truth is that we don't really know how things will turn out for Luke or Megan, either, or for anyone in our family.

Maybe that's the trick I have to learn: how to think about just how much alike in kind, if sometimes different in detail, James is to Luke and Megan, and how much that likeness can serve not just as a way to understand James, but the other two as well. I've heard parents talk about how they don't think so much about their child having Down syndrome after a while, and the Down Syndrome Association's ad campaign last year was, "We're more alike than different." I think I still have a hard time making my gut believe that, even if my mind understands it.

Goodnight Moon

When I got home from Jefferson City today, James came walking into the dining room from the family room looking at me, and he made some gesture against his face that I only caught a glimpse of but looked very deliberate.

A few minutes later, to engage him in something, I asked him if he wanted to read Goodnight Moon, which was sitting on the counter (no visible graphite flecks on book—a relief). As soon as I said "Goodnight Moon," he started saying "mmmooOO" and sometimes even got another "m" at the end of the sounds. And he kept doing it over and over as Julie and I were asking him about Goodnight Moon. He even giggled a little, like he knew he was doing something big.

This is a big step forward—usually you have to very deliberately prompt him for the sound (What does the cow say? It says, MmmmmmoooOOOO, and so on), but this time he repeated the sound back just on his own. And he connected the "moon" and "moo" sounds on his own!

So in the middle of all that, I was prompting him to say "Dad" in sign language, which he did—and that's when I realized that that's what the gesture had been a few minutes earlier when he came walking towards me in the kitchen. Awesome.

We've seen little flashes of active, unprompted speech before—he's had times where he'll sign for "drink" or wave good-bye without being prompted—but they're very few and far between. But James's pattern of learning so far has been to move from those few flash kinds of moments to more sustained demonstrations and then the thing itself—it may take a while, but he can get it. Maybe now that he's walking he's ready to have that kind of take-off with speech—we hope so. If you see him, play repeating games!

Sometimes they wake up happy ...

and this morning was one of those times. Luke was jacked up about the Pinewood Derby, and Megan was excited too. When they heard James start talking on the monitor, they raced upstairs and jumped in his crib—this is what Julie found when she got up there, or sort of. I think they were actually sort of piled on James before their pose for the camera.

It only takes a week—and a village ...

Luke's Pinewood Derby was this morning—he finished in third place (out of six) for his Den, with an average speed of 174.2 mph for his three races, good for third place and a trophy. (He edged out Adam, his best friend, who averaged 174.1 mph, though neither he nor Adam seem aware of that.)

Of course, as we discussed numerous times during the week, the best part of the Pinewood Derby is making the car together. (I started playing that card pretty hard the closer we got to the event, as Luke started speculating that he was probably going to win, or at least come in second. More on that in a minute.)

Making the car really was the best part, actually, and not just something I was saying to try to prevent a scene. And the fact that it was the best part was a little surprising, given that I have low woodworking and general handiness ratings. So it took a village to produce the car, which was great. Since I waited until the final week, much to Julie's chagrin, there was a little drama too.

We started with Luke drawing the designs (you can click on the picture to make it bigger):





Then we called in the expert cutter, Uncle Jerry, who followed the specs and produced a cool shape. Luke did the sanding and we were ready for paint. (Jerry is holding the mini-Derby car Luke made out of the scrap wood.)


We put lots of coats of blue metallic spray paint on over the next few days. In the meantime we made a visit to the wheels guru, Paw Paw, who taught Luke how to wax the wheels for maximum speed. Luke spent the next few days repeatedly waxing the wheels, and also asking all of his friends at school if they were waxing their wheels. They weren't, which led Luke to conclude that the race was his for the taking.

By Thursday morning we were ready for the metallic orange stripe (Luke chose the color scheme at the hobby shop, as well as the decals). Luke did a few coats before school, and after a near disaster Thursday afternoon with the tape peeling that Julie saved with some fancy slicing and touching up, Luke was ready to put the dry transfer decals on Friday morning before school.

That left only the weighting left. Unfortunately, this responsibility fell to me. I drilled a few rough holes in the bottom of the car, chipped off a few pieces of the (real) lead cake bequeathed us by Paw Paw to the horror—which steadily increased over the next 12 hours—of Julie, and headed off to school with a sack of stuff I thought would get me through the last step.

As you might expect, things did not turn out as I expected. But thanks to the chemistry teacher (scale, pliers), advice of colleagues in science, English, and even administration (it turns out that if you carry around a Pinewood Derby car, people are excited to talk to you about it), and finally the serendipitous appearance of two of the maintenance staff (with dremel and circle cut saws and blowtorch for heating lead) in the carpentry shop, I got the lead into the car and the car's weight to 5 ounces. I oohed and aaahed and held the lead in the pliers while one of the guys heated it straight over the car; the paint only caught on fire a couple of times (no joke). But you wouldn't know all of that, the good and the bad, to look at the final product—the blue #42 there in the middle. And its official check-in weight was 141 grams; the max was 142. Not bad.


A few shots of graphite to the wheels and some spinning and we felt pretty good. Except about the graphite flecks all over the kitchen countertop where we applied the graphite, since Julie had declared the basement off-limits due to lead contamination and the Haz-Mat suits are prohibitively expensive. But I digress.

Photos from the race:

Luke and Adam watching their cars in the first heat. Luke's car is on the left; Adam's won by something like .005.






Adam checking out Luke's trophy. As I type this, they're in the next room watching Phantom Menace, so I guess no hard feelings.