Lucas Camilo

There have been more wonderful excursions since Krista last wrote, including a couple of fun-packed days on Whidbey Island with my parents.  Lucas got to feed grass to some alpacas, play with crabs on the beach, and watch swarms of seagulls compete for bread crumbs tossed into the air by Nonna.  For a kid that loves animals and sea life it was a great couple of days.  However, you shouldn’t believe Lucas if he tells you he saw an orca whale on the ferry ride home…. though he really wants to believe he did!

The day after we got back we found ourselves dancing with a salmon at the Seattle Tilth Harvest Fair – another huge thrill for Lucas – and we were fortunate to be joined by our friend Alexis for that excitement and the Whidbey trip.   In the picture you can see that Lucas is actually enjoying the rowdy brass band that provided the soundtrack for us and the dancing fish.  That was a surprise, and he still hasn’t stopped talking about that salmon (it was a Coho, we think.)

Then, the day after that we saw Caspar Babypants LIVE!  Maybe that means nothing to you but it’s huge for Lucas since Caspar (aka Chris Bellow, formerly of grunge-era band Presidents of the United States of America) is his current favorite musician.  Imagine the thrill when “Mister Rabbit” was the second song he played!  Here’s the video so you can get a taste:

Speaking of music, our friend Tom wrote and recorded another amazing song for Lucas’s birthday – check it out:

[audio:https://lucascamilo.com/wp-content/uploads/2012/09/Tom_Ricker_Song1.mp3|titles=Tom_Ricker_Song1]

All of this has inspired me to pull out my old guitar and start strumming around Lucas.  Unfortunately, the first time I did it there were only 4 strings remaining and it was totally out of tune.  I got a big hand waive, followed by “all done with the guitar daddy!”  We’ll have to try again once I get it tuned up.

Now I’m on my way back from Washington DC after a 3-day trip for work.  I didn’t get to see that many old friends because of the packed schedule but it nevertheless made me nostalgic, bringing me back to the challenging and emotional – yet also very special – early months and years of Lucas’s life, not to mention the wonderful community we were so fortunate to have during that time.  Seattle has worked out great for us and for Lucas but we still miss DC.

Meanwhile, I understand Lucas has been getting ready for pre-school without me!  He’s got a new penguin backpack, has been practicing his finger painting, and even checked out a volleyball match at the nearby high school.  Wow… I can’t believe we’re putting him on a bus to school next Monday.  But more about that soon…

We are behind in posting here, and it’s hard to know where to start with a Lucas update these days.  We’ve been taking full advantage of our wheelchair van super-mobility, feeling lucky to have such great friends and family to hang out with, and so many beautiful parks, beaches, and mountains to explore in and around Seattle.

Since we’re not going to write about it in details, it feels worth making a list of places we’ve taken Lucas, to mark (if just for ourselves) how totally mobile our life is right now.  Two years ago it felt like most of our trips out of the house were to the doctors office, and even those trips were rare.  But just in the last 15 days we’ve gone to:

– Paradise lodge at Mt. Rainier for the weekend, with Gramma Susan, Charles, and Aunt Megan

– The library, music class, and the post office (Lucas loves stamps, it turns out)

– The Arboretum and Seward Park with Tio Sha, who came to visit last week

– A long meeting with the school district to finalize Lucas’s IEP (thanks to Stef for coming along to entertain Lucas so the two of us could participate in the meeting!)

– Hood Canal this weekend, with three other families and their many small kids

The hours in the van haven’t been Lucas’s favorite, but as long as he’s not totally exhausted he tolerates the longer-haul trips.  But of course sometimes he is exhausted, so that has meant a couple hairy moments, with Lucas looking absolutely misearble, and us trying to discern if he’s having trouble breathing or just grumpy.  And we’re still not sure all the time, and it feels terrible to think you’ve put your kid in a place that is painful… so there have been those moments too.

An upshot of the van is that it came equipped with a working sound system (unlike our old car), so Lucas can now request his favorite song on repeat.  Which can drive a person crazy, but then if he doesn’t get it he’s able to cry like he’s having trouble breathing, so we hurry to put it back on.  And miraculously the “Sticks” and “Naranja” songs sometimes seem to clear his airway :)

Speaking of the “naranja song,” Lucas’s latest obsession is Spanish.  He suddenly realized that some of the books we have are in Spanish — books that for the last year he hasn’t wanted to hear — and he got excited.  It started with La Oruga Muy Hambrienta (The Very Hungry Caterpillar).  He memorized “una manzana” (one apple), “dos pears” (two pears), “tres ciruelas” (three plums)…  Then he went on to memorize the caterpillar’s entire Saturday menu (un biscocho de chocolate, un helado, un pepinillo, un trozo de queso suizo, etc.)  It may seem hard to believe, but Lucas now has the entire book memorized in Spanish.  He proceeded to counting a week later, and has now mastered going all the way to 15 in Spanish, and he’s close to 20 (see the video above of when he first got the counting bug).  Each time he gets to where he’s going, he finishes with such glee.  His counting sounds like this: uno, dos, tres, cuatro, cinco, seis, siete, ocho, nueEVEEEE, DIEEEEEEEZZZZZZ!!!!!!!  He does the ASL signs (or tries) along with the number, and shakes his fist in the sign for 10 along with his ebullient “DIEZ!”  It’s pretty amazing to watch.

So his favorite question these days is “how do you say ____ in Spanish?”  We’ve gotten “how do you say scoop in Spanish?” (sacar).  “How do you say plunger in Spanish?” (embolo, for a syringe).  “How do you say walrus in Spanish?” (el morso).  This is testing even our vocabulary, so he’s learned what it means when we say “do you want me to go look it up?”  He always says yes. He’s even asked, “How do you say Spanish in Spanish?”

We have a number of friends who are raising their kids intentionally bilingually – something we maybe thought we’d try, long before Lucas was born.  And then there were so many other things going on, we never got around to the Spanish on any regular basis.  So although this fascination isn’t exactly turning us into a bilingual family, it’s thrilling to see him pushing us, and even getting experimental.  The other day he was trying to tell us something that we didn’t understand, so we asked him if he could “use another word,” (a cue his speech therapist has been working on.)  He sort of sighed and declared, “how do you say Butterfly in Spanish!”  He had been pointing at his temporary tatoo, saying “Mariposa tatoo!”

And then we got out his Hungry Caterpillar playing cards (yes, they exist), and Lucas was looking through them, naming the fruits and other foods.  At one point he held up a handful or cards with the caterpillar them and said admiringly and to no one in particular, “Look at all those Orugas.” He looked like a king counting his gold… in Spanglish!

And speaking of counting your blessings, there’s wonderful article in the Atlantic by a mother of a son with disabilities.  She writes beautifully about the feeling of fullness, of having everything you need, even when from the outside your life looks hard.  Even when your life IS hard.   You can read it here.

We keep meaning to share the many resources that we love, so look out for some more book/article review soon.  And if you have great resources on parenting or disability or parenting and disability, send them our way and we’ll compile a resources page.

We did a second test drive yesterday in the “Special Lucas Car.”  He didn’t exactly tear up the streets but it was exciting once again to see him exploring the functions of the power wheelchair, albeit extremely cautiously.  He’s a cautious guy, after all, and we remain proud (not to mention surprised) that he’s been so willing to jump into it on his first couple practice drives.  The next step is to find a big open space where he won’t have to dodge moving cars…

Here’s some more recent videos of Lucas being Lucas.  First, his patented “beard rub”:

Lucas singing the ABCs all by himself:

Meanwhile, during our drive up to Burke’s parents place on Whidbey a few weeks back Lucas developed a strong affinity for Elvis.  “Hound Dog” is his favorite:

Also on Whidbey, Lucas enjoyed some guitar music at the Greenbank Farm.  With help from Daddy he shows up another patented move, the “Camel dance”…

The sun was out this past weekend, and it shined light on the many highlights of being in Seattle in our new home.  Here are a few:
(to best view the album click on the first photo to enlarge, then click anywhere on the photo to scroll through the rest)

And there’s been more.  There was a visit from Aunt Megan over a week ago now (a whole two days without Lucas photographs… what kind of parents are we?!?), visits from Nonna and Papa, and an upcoming visit from Gramma Susan, too.  Lucas is mostly loving the attention, though he does get overwhelmed at times.  Like when some neighbors walked walked up to him the other day to say hi and Lucas – usually quiet when he meets new people – immediately belted out a loud-and-clear “bye, bye!”  But overall we’re happy about all the visits and looking forward to a house-warming party this weekend.

It was a beautiful day for Christmas so we went for a walk in nearby Rock Creek Park. Lucas made lots of requests to go “fast!”  Here are a few pictures and a video of us hanging out alongside the creek.  There’s also a shot of him playing bells for a special version of “Rudolph the Yellow-Nose Cow” – he insisted the Rudolph’s nose not be red and would only go along with the song in the first place if Santa was being pulled by cows…

Lucas also got a card from his cousins Madden, Tya and Ellody that made him very happy:

It’s been busy around here again, with Burke gone most of last week to Seattle, and Krista and Lucas holding down the fort.  And by holding down the fort, we mean lots of finger painting, dancing, walks during beautiful, sunny afternoons, hanging out with friends, and coming to dominate the “Old MacDonald” i-pad app.  Nurses Florence and Victor were around a lot and helped, allowing Krista to keep teaching yoga and stay on top of classes (she aced her first anatomy and physiology exam — go ahead, ask her about the kidneys and adrenals.)

Burke had a great trip to Seattle, which he’ll report on later.  He got back late Saturday night, and his parents hitched a ride on the same flight, so Lucas will get showered with Nonna and Papa attention for the next few days.  We all went out to the Occupy DC protest today, and Lucas quickly and repeatedly gave the “all done” sign.  We assume that he was “all done” with corporate greed and extreme inequality, not that he thought the protesters should go home.

Until we have time for more of an update, we figured we share a couple pictures of Lucas’s latest cuteness.  He’s decided that since he loves dancing so much, the stuffed animal puppets must want to get in on the action too.  So when we pick him up to dance, he immediately asks for the pig.  Then the dog.  Then the cow.  So we hold Lucas, and he holds the small barnyard as we dance around the room.  It’s precious.

(PS – Happy Birthday Aunt Megan!)

There’s lots of good stuff to report these days from Lucas-land, especially now that we’ve survived both the earthquake and hurricane Irene.  The latter involved lots of preparation as well as an evacuation plan to a local hotel in case of a power outage.  Alas, the worst we got was some gusty winds and a lot of rain, which was fine by us.

Lucas was unfazed by all the weather madness and has been generally doing well.  His sign language repertoire continues to expand –  though not as quickly as before now that he’s mastered just about all of the animals in the kingdom – and he often combines a sign for something with his attempt at vocalizing the actual word.  For example, he’s become addicted to chewing on bananas and will let us know he’s in the mood (about 10 times a day) by doing the sign for “banana” at the same time as he repeatedly says “an-nan-na!”  We sometimes joke with him – “oh, you want an apple Lucas?” – which he does not find amusing at all.  The response is a rapid side-to-side hand wave (the sign for “all done” which Lucas also uses for “no”) coupled with a curt “nah!” and then the resumption of the “an-nan-na!” along with the sign for banana.  We should mention that the sign involves sticking out your pointer finger and then peeling at it as if it were a banana… so it’s a pretty cute display, to say the least.

Another thing he’s become rather addicted to is his iPad.  We actually got a prescription for one back in December based on its potential as an augmentative communication device.  At first Lucas hated the thing and would cry whenever we pulled it out; later, he would reluctantly play games with his speech therapist but we haven’t yet found good apps to use it for communication.  However, since we don’t have a TV the iPad is Lucas’s one source of animated visual entertainment, and he’s come to love both the Itsty Bitsy Spider app as well as the Wheels on the Bus app.  Recently we’ve downloaded a couple apps that actually have more educational potential and Lucas is starting to both learn the alphabet and identify shapes using them, which is exciting.

Another thing he’s gotten excited about is Skyping with grandparents (as well as other family and friends).  Nonna and Papa (Burke’s parents) and Gramma (Krista’s mom) all love video-chatting with Lucas from across the country, and they have a lot more patience then Burke’s three nieces (Madden, age 6 and twins Tya and Ellody, age 5).  The grandparents read books to Lucas through the video-chat and show off whatever animals they can corral around the house, which is very pleasing to Lucas.  The other day Burke picked up the phone to make a call and Lucas immediately started doing his signs for “Nonna” and “Papa”, demanding a video chat.  We called them and luckily they were home and obliged.  Lucas had previously developed the sign for “grandma” during Susan’s last visit and it may be his favorite person sign after Mommy and Daddy.  Of course, “duck”, “cow”, “cat” and “doggy” blow all us humans away.

Speaking of animals, Lucas now gets occasional visits from Bella, the friendly next door dog.  He beams when she comes into the room and starts slapping his leg and saying “nogey! nogey!”  Lucas still gets a little nervous when Bella puts her head right up to him, but he’s practicing petting and talking to his stuffed doggy, Fuzz.  The other day he was jazzed up following a visit from Bella, and took his energy out on Fuzz, which we captured in this video.  Also note his attempt at saying “elephant”…

First of all, we survived yesterday’s earthquake.  Apparently many people throughout the city had to evacuate, including the White House, Congress, the Pentagon, and DC public schools.  But Burke was on his bike and felt nothing, Lucas was napping and felt nothing, and Krista ran frantically back and forth between Lucas, his vent, and the door frame for the 30 seconds the quake lasted.  The upshot for us was that the roads were clogged, so we canceled a drive to Virginia and instead went for an afternoon walk in a new section Rock Creek Park.  We found kids riding horses, and Lucas was very excited to meet his first extra-large mammals up close. (Apparently the flamingos, red-ruffed lemurs, gorillas and orangutans at the zoo all knew the earthquake was coming before it hit, but the horses seemed totally unfazed an hour after the quake.)

Anyway, the bigger news in Lucas’ life is that over the weekend we threw a real birthday party for him.  Our upstairs neighbors let us use their space, and we got out the streamers, balloons, and birthday candles to do Lucas’s second birthday right.  He was a great sport and showed his “two” fingers when anyone asked how old he was.  We brought a big pile of his favorite books, and then he got more books as presents, so he spent much of the party happily geeking out on animal stories.  But we also forced him through the candle-stuck-in-tasty-food ritual (for Lucas, a banana), and sang him the birthday song.  He did really well through it all, and it wasn’t until we helped him blow out the candle and everyone clapped that he lost it.  Lucas apparently still hates clapping, and he let it be known with huge, puddley tears.  But once that was over and he got to shove the banana in his mouth (while reading books) he was back to his party animal self.

Thanks everyone for the blog/email/party-going birthday wishes.  Indeed all three of us had a great second birthday!