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.
Monday, July 12, 2010
Friday, July 9, 2010
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.
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.
Thursday, July 8, 2010
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.)
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.)
Monday, July 5, 2010
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!
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!
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