Lucas Camilo

We use this blog for a lot of things: health status updates, reflections on parenting, bragging about Lucas, sharing what we’re learning about disability… But sometimes we just need to write down everything that’s happened so it doesn’t get lost.  So the themes of this post are (a) look how much we can do, and (b) look how much we can do despite, and sometimes because of, disability!

August is the month to visit us in Seattle.  Our dear, dear friend Sha Grogan-Brown (aka Tio Sha) came to town mid-August, just in time for a hair cut.  Lucas doesn’t usually share his silliest side with anyone except close family, but for Sha he made an exception.  It started the first night Sha was here, when we got out the scissors.  Lucas was a pretty good sport about the haircut, but since Sha had a large wheelchair headrest to contend with, the haircut took a little while.  So Sha started talking up the cutting sounds — “snippy snip” and “trimmy trim.”  Lucas happens to love silly words, and he lit up.  Pretty soon he was embellishing.  “Snippy snip snip snip… trimmy trim trim!”  When he takes any silly word game up a notch he beams with pride.  But each time Sha met him with more silliness, and Lucas would crack up with his huge silent belly laugh.  The snippy snips turned into a whole language that lasted throughout Sha’s visit.

Sha timed his trip to be here for Lucas’s birthday, and it was awesome to have him here as uncle/friend/party-helper since this was our first attempt at a real kids birthday party.  We rented the very accessible and spacious community center near our house and invited kids from school, from music class, from the neighborhood, from our anti-racist parents group, and from our wider circle of disability families, as well as our family.  We were nervous about the party — Lucas often doesn’t love a crowd, plus many of the people coming wouldn’t know anyone else at the party.  But it was a magical success.

The two key ingredients were bunnies and Ben, our musician friend.  Someone in Seattle came up with the brilliant plan of renting out her bunnies for kids birthday parties, and they were as magic as it sounds.  For a while the party consisted of the mayhem you would expect of a 5-year-old’s birthday party: children running (or wheeling) around everywhere with balloons, markers, and smeared cream cheese.  And then the bunny lady arrived.  She said nothing, just pulled out a blanket and opened up her large tub of bunnies.  Suddenly all the attention shifted to her corner of the room.  Kids quietly sat down on the blanket, and she handed them swaddled bunnies with carrots and cilantro.   I had talked to her beforehand to be sure it wasn’t a requirement that kids sit on the floor, and she was ready to hand bunnies off to the kids who stayed in wheelchairs.  It was mesmerizing.

Lucas loved it.  He held 3 week old baby bunnies, lop bunnies, and a mystery bunny named Señor Wobbly who traveled in a basket because he seemed to have low muscle tone, too.  Lucas’s friend Chris convinced the bunny lady that his lap was safe, so she set the bunny down and he peeled out in his powerchair to deliver a bunny to another kid on the other side of the room.

Near the end of the party our friend Ben generously agreed to play a few songs.  He had learned “Here Comes the Sun” that week (Lucas’s favorite Beattles song), and Lucas sang right along.  He also played some Bob Marley and Violent Femmes songs that were new to Lucas, but he loved those too.  In fact, in the days after the party, Lucas talked more about Ben’s music than even the bunnies (this is a kid who 95% of the time shows more interest in animals than humans.)

And two hours after it started, it was over.  And family and friends helped us undo the mess, and Lucas went home to revel in the excitement.  We both felt so glad to have so many people we’ve gotten to know in the last 2 years come out to celebrate Lucas.  And so relieved that Lucas liked it, too.

More photos from the party are below, along with a video of Lucas and his buddy Chris in their wheelchairs, holding hands and watching the music:

Yesterday Lucas lost his second tooth.  He got very excited about the tooth fairy coming, and kept asking us what she would bring.  His cousins had told us about writing letters to the tooth fairy, so when I (Krista) put Lucas to be last night I offered to take dictation.  I grabbed a small piece of scratch paper, but it turned out Lucas had a lot to say.  It was exciting to hear all his thoughts (and slow, because after I wrote each sentence, he would take the letter from me and read it, starting again from “Dear Tooth Fairy” each time.)  As the letter got longer I felt like I had this window – through more words than Lucas usually uses – into his thoughts.  And it occurred to me that he was writing his own sort of blog entry about early August.  So here it is.

Dear Tooth Fairy,

I lost my second tooth today.  Will you bring me a puzzle?  Please.  Thank you for the turtle.  I saw E.T. the walrus at the zoo and aquarium today.  And I lost my tooth at music class.

 I saw the sharks eating.  The elephants were eating grass.  I saw the tiger.  I like to do bowling.  E.T. swam right up to me.

I saw a friend who was playing songs at the festival.  The song was called Miles and Miles. 

We saw Moses the camel.  Moses was sniffing my chair. 

We saw trains in Index.  The trains were carrying airplanes.  We went to the Iron Goat Trail.

I like to do the new dinosaur puzzle.

Love, Lucas

The back-story to most of this is our trip to the Point Defiance Zoo and Aquarium yesterday, and then our trip to Index, Washington over the weekend.  Index is a tiny town in the North Cascades, just about an hour north east of Seattle.  Our neighbors have a cabin they’ve lent us before, right on the Skykomish river, so we took Lucas out for a weekend trip.  Index is the smallest town in western Washington with about 160 residents, plus the visitors that come to kayak and rock climb in the summer.  There are active train tracks that run through the middle of town, and right by the cabin, so Lucas got to see giant freight trains up close.

We happened to be there for the annual Index Arts Festival, which meant a warm outdoor summer day with 20 or 30 arts vendors set up in tents around the central town park.  There was a stage where local and traveling musicians (we heard blue grass/old-timey musicians who had come all the way from Bellingham) played for audiences that never got bigger than 50 people.

Lucas’s first goal at the festival was to meet dogs, and there were plenty.  We’re used to approaching strangers and asking if Lucas can meet their dogs – we do it all the time, and people are almost always friendly.  But in Index something felt different.  People were not just polite and patient, but it felt like many people were genuinely really excited to meet Lucas.  There was a vendor who did watercolors of animals who loved meeting Lucas and seemed deeply moved that he liked her goose painting.  There was a family visiting Index who came over quickly to meet Lucas and then offered useful suggestions about accessible hikes (ie the Iron Goat Trail).  There were at least three other wheelchair users at the festival, which felt like an unusually high ratio of chair users for such a small town and gathering.  An older woman in a scooter chair was excited to introduce Lucas to the dog that rode around in her lap, and she was impressed to hear Lucas’s voice.  Another family showed Lucas their two big dogs, including a big whining husky, and they all beamed at Lucas as he admired their dogs.

And there were other people, after the festival, who seemed so happy to have Lucas in town.  An older guy with rolled up flannel sleeves leaning out the window of a beat up pickup truck who pulled over to ask “how old is she?” as a way of meeting Lucas, and he told us about his grandnephew.  A younger guy rolling through town on his bike drinking a beer gave Lucas a giant thumbs up.  We spent the drive home trying to decide what it was that made Index so welcoming.  A higher than average number of people with disabilities?  Small town culture?  Working class culture?  Or just a beautiful summer day with nowhere to be and nothing to do except hang out in a park with a few friends and strangers?

Its hard to say how all this registers for Lucas.  He still doesn’t say anything about his differences, or about how people interact with him.  But that of course doesn’t mean it’s not all registering.  He was in a great mood all weekend long, maybe even a little more willing than usual to explore and try new things.  Maybe it was the attitude of strangers that helped him, or maybe he just felt how happy it made his parents to feel so welcomed.