Bigger feet, slightly

This week was the annual Little Feet Meet in Colonial Heights, a Special Olympics sponsored field day for younger kids. It was Joe’s fourth meet, and it was terrific! This year it was moved to the high school football field, and it seemed like everything was even more perfect than usual. The weather was perfect, the kids were perfect, everything was as good as it gets.

Almost every post here ends with a thank you, and as sincere as they are I wish it were more. The Little Feet Meet, for example – I don’t even know most of the people that put it together. It just happened, seamlessly, for us. I know a few names, but rather than leave anyone out … thanks to every person who was there. Organizers, volunteers, parents, athletes – you’re all tops in our book. Thank you.

A whole bunch of photos from Little Feet Meet 2017 here …
… and Little Feet 2016, Little Feet 2015 and Little Feet 2014!

Joe with Piper, his coach for the day. Thanks Piper!

Joe with Mr. McCoig, his mentor and teacher – and the guy who introduced us to Pete the Cat. Thanks Mr. McCoig!

Joe with Ms. Finch, his assistant and muse. Thanks Ms. Finch!

Keeps on giving

I’ll always remember August 4, 2012.

For about 30 years I’ve had a song in my head, and for most of that time couldn’t tell you what it was. I knew the tune, could hear the instruments. I knew everything but the words. It was there almost every day, and I could call it up anytime I wished. But I’d never tired of it, and enjoyed having it with me. It had become my friend.

But I didn’t know what it was. I asked people for years, tried to hum it to them in hopes something would click. But even when Google and YouTube came along I couldn’t find it. Try finding a song when you’d last heard it in the mid-80s and don’t know the words. It’s almost impossible.

This is how I’d describe it … It’s upbeat, sort of raucous. It might be a Scottish band, something from the 1970s. No, definitely not the Bay City Rollers. It sounds like bagpipes but I think it’s guitars. It’s a call-and-response type of chorus. It’s kind of like a sea shanty, but not.

And it’s not an earworm. I would never call it that because this song is my friend.

Growing up my dad sang a song, to my beautiful mom’s dismay, that went “I got a woman as big as a house, as big as a two-story house with a porch and a fence.” My sister and I just figured it was a novelty song from the olden times, back when the vinyl spun at 78 rpm.

Then one day I discovered Louis Prima, and the original The Bigger the Figure from 1958. My dad singing that in 1979 is like me singing If I Had a Million Dollars to Joe. Time is weird. And as distinct as Louis Prima’s voice is, that song means my dad to me.

And that brings me back to the warm summer evening of August 4, 2012.

My favorite sister-in-law, nephew and niece were visiting us. We were all together, leaving an outdoor concert in Hopewell. I was describing my friend the song, for the umpteenth time, and my sis Amy heard it in her head, too. And she knew a few words! Something about a chameleon.

We’re in a minivan, but it’s 2012 and we have the sum total of human knowledge in our pocket. “Chameleon sun song” is all it took, and my song had a name … Run Runaway by Slade.

To this day I can call it up at any moment. I whistle it every day as I’m walking to the car on the way out of work. I whistle and sing it to Joe. He’s starting to sing along. It’s our song now. We pretty much share everything, but I like that this in particular is ours. I imagine him long after I’m dead humming it to himself like an old friend. You can’t take that away.

This is a long way to say thanks Amy, that was a great gift you gave us. And happy birthday!

Amy, August 4, 2012

Me and Joe, April 29, 2017

Slade, 1983

And a little Louis Prima for the uncultured few who got this far. Sorry mom.

Known only to God

Today we visited the Southside Virginia Training Center, which is thankfully closed. A century ago we would have felt some pressure to send Joe off for “training,” and he may have lived on a campus like this his whole life. Our doctors may have said it’s best for everyone. There wouldn’t be the services and reasonable accommodations we have today. There wouldn’t be a Mrs. Ridpath or any of the dozens of other people we rely on.

Many of the center’s buildings are boarded up and there isn’t much to see, so we spent our time at the cemetery, where half or more of the graves are just crumbling, unnamed markers.

I know society was much different decades ago, and it’s not fair to judge family decisions made then. But I can’t imagine life without Joe, and am thankful he won’t end up in an unmarked grave.

Training Center Cemetery
“In remembrance of those persons who were served and buried in the campus cemetery during the early years and are known only to god. May they rest in peace.”

Training Center Cemetery

Training Center Cemetery

Training Center Cemetery

Precious little Snowflake

The annual Snowflake Ball was this weekend. As always nothing but thanks and love to Tracy Lowery and her entire family for putting together this incredible event. This is such a big deal, and so much work, and they do it all just because it’s an unbelievably cool thing to do. How great is that?!

The local Special Olympics group – which puts on the Snowflake Ball – relies on donations. Each winter Special Olympic supporters from all over Virginia jump in the cold, cold ocean – it’s the biggest fundraiser of the year. So if you’ve got a few bucks laying around, consider donating. Go here, and just pick a name. They’re all terrific people. Pick a Duong, because Konnie and her family have been great to Joe since he started pre-school at age 2. Hi Konnie!

There are a lot of photos on Flickr. A few of my favorites are below but it’s such a wonderful event you should check out the rest.

Snowflake Ball 2017
Carleigh escorting Joe. Alert readers may remember Carleigh from last year’s Snowflake Ball, or from Joe’s visit to this past summer’s state games.

Snowflake Ball 2017
Two young teachers from Joe’s school.

Snowflake Ball 2017
With Mama – Tracy Lowery and friend in the background.

Snowflake Ball 2017
Joe’s favorite dance partner of the evening.

Snowflake Ball 2017
Joe does the Charleston to Bruno Mars. Old school? Psssh. I’ll show you old school.

Suit up.
Getting his hair done by Mama before going out.

Day on, not off

For Martin Luther King Jr.’s birthday this year we joined our Arc South of the James friends Bryan and Anita on a trip to the Virginia General Assembly to lobby our representatives about intellectual disability issues. Specifically, Virginia needs to provide (fund) more Developmental Disability Waivers, and look for long-term ways to make our schools more inclusive. Read more here, and please contact your representatives if you’re so moved.

The Gen. Assembly building was PACKED, and some of the folks were there for really important issues like “they’re gonna take ma guns!” It was standing room only, lots of Glocks and Smith & Wessons, and representatives were lucky to have 10 minutes to give anyone. That’s why we brought our secret weapon, our silenced, snub-nosed assault rifle for peace.

Joe stops time. Crowds part. He charms assistants. Doors open. Majority Leader Kirk Cox wants to catch up. Senator Amanda Chase has a son named Joe. Del. Rosayln Tyler is swamped, but “I know she’d want to be interrupted to see him.” Del. Riley Ingram isn’t in, but come on into his office and his aide will talk with you. And while these speech-makers are finally speechless, lost in Joe’s eyes, we drop some knowledge.

It’s really something to see. Joe is instant perspective. I believe if he was aimed right, everyone would have laid their guns at his feet. If we could air-drop him into certain spots in the world, he could stop some of the greater hate. Maybe Jesus was just a quiet little kid, and all the red-letter stuff was simply what people wrote because they knew it was right, but were too scared and human to say it themselves.

Anyway, I don’t think the Second Amendment (or the $13.5 billion gun industry) is in any danger in Virginia, and Obama has less than three days to Takbir from house to house scooping up our freedom. But an 8-year old has to lobby for us to get past shoving certain kids into the forgotten classroom next to the bus garage. And worse, the Department of Justice has to flex to help us stop sentencing people to life in a “training center.” SM damn H.




Camera obscura

Joe has learned a lot from observing other people. Over time he’s figured out things like how to cough into his hand or arm, or use typical inflection and hand gestures when having a conversations (with words he made up). Lately he’s started taking long, satisfying swigs out of water bottles, just because he’s seen other people do it. The bottles he uses are sealed, or empty, but does he care? Goodness no!

It wasn’t surprising, then, when he held the camera his grandparents gave him for Christmas to his face. We wanted them to get Joe a camera because his Grandpa has started taking terrific photos in the last few years, mostly landscapes and wildlife he sees as he walks around the rural area where they live. We though Joe with a camera would be cute, kind of like when he points the remote at the TV, or holds a “phone” to his ear (often also the remote).

What happened, however, was a big deal.

He started taking pictures, with no help. And they’re pretty good! Years of pressing buttons, looking at screens, and seeing Mama and Daddy using cameras all crash together in a very Joe way … blurry, odd angles, lots of feet, no concept of what he’s doing. But, like all things Joe, there’s art there. And it’s a huge deal for us, because it’s our first true look at what he sees.

It’s also a big deal because it reminds me how little I understand about how he learns, and what he has the capability of figuring out. To me, and I’m sure his mom, part of him will always be the six-month old who was a lump on the floor, not doing things a six-month old should be doing. That lump as a point of reference makes everything Joe does today awesome. That lump eventually rolled. Then sat, then crawled. The other day he took my picture, then camera-dropped and walked out of the room singing Kidz Bop. These things are magic.

I hope he always takes pictures, it’d be great to see us grow old through his eyes just as we’re watching him grow up through ours.

Joe Originals
Mama in the Car. Digital, 2016. Joe VanderClute Tremblay (part of his Rest Stop collection)
Lia gave Joe his camera to play with while on the road. We’re so proud that he took this – if we were a sports family, this would be a “my son hit a grand slam the other day” moment. Nothing but net.

Joe Originals
Daddy Sur La Table II. Digital, 2016. Joe VanderClute Tremblay (part of a series of photographs of tables, centerpieces and people sitting at tables)
The camera takes grainy pictures, much like a phone would shoot way back when people were saying “Damn Gina! You got a cell phones with a camera?! Word.” But that’s part of the charm, like Nicéphore Niépce with a Razr. Plus it plays a little game where a bunny jumps across logs in a river, sort of like Frogger. Let’s see your Hasselblad do that.

Joe Originals
Papa Plays Guitar. Digital, 2016. Joe VanderClute Tremblay
Music and family come together in this intimate portrait of Joe’s Papa.

Joe Originals
?. Digital, 2016. Joe VanderClute Tremblay
I don’t know what the hell this is, but you try to recreate it. Are we inside? Outside? Is it day, is it night?
Yes. As an award-winning writer once said, he “went Jackson Pollack on that mofo.”

Joe Originals
Breakfast Table with Three People. Digital, 2016. Joe VanderClute Tremblay
This is one of my favorites. There’s just enough shape and feeling to identify the three subjects. Joe makes bold use of his own finger to blur the bottom half of the frame. And the pop of red? Frosting.

Notice that Joe uses his middle name in his work, a nod to the Dutch masters of old. I just made that up (not the middle name, who could make something like that up?), but it’s kind of true. Google those guys and tell me the palette and use of light aren’t reminiscent.

And again, does anyone read this far? Seriously, go do something constructive. Hug your child, or take a picture. Study, don’t you have a test coming up? Did you remember to put the clothes in the dryer? Word.

I’m on a float, yeah!

Everybody look at me cause I’m riding on a float …

The Colonial Heights Civitans are a wonderful group of people. They’ve been supportive of our local Arc chapter for a few years, and asked Lia and Joe to join them on their float at the annual Christmas parade. So bam! We’re in a parade.

… take a good hard look at the $&#$%! float.

Christmas Parade 2016

Christmas Parade 2016

Christmas Parade 2016

Christmas Parade 2016

Christmas Parade 2016

Basic Training

Camp Easter Seals was cray. zee. Not really, it was pretty low-key and relaxing, but Joe had a terrific time and that’s all that matters. We went for a family weekend, sort of a try-it-before-you-buy-it intro to the camp. One day we might send Joe off on his own for a week or two in the summer. Not anytime soon, we aren’t ready. He is. We aren’t.

It all started with fire. Then art with pieces of plate glass. Then arrows. Then climbing. Then horses. It was a little paramilitary (no, no it wasn’t).

Camp Easter Seals
The pros call it “practical effects.”

Camp Easter Seals
The original 1957 merry-go-round may have been Joe’s favorite part.

Camp Easter Seals
Not totally cool with the horse, but still totally cool.

Camp Easter Seals
Adaptive bow. Who know?

Camp Easter Seals
Our barracks were designed for 24 troops. For our visit they replaced the regular beds with tiny cots. Joe brought his tent because he thought we were going to rough it. “Milquetoasts!” he said, and slept in his tent anyway.

Camp Easter Seals

Since 2008