Lucas Camilo

Lucas was back to sleeping well for a few nights last week, but then fell off the wagon again this weekend.  Last night he woke up around 2 am and never went back to sleep.

Somehow he was in great spirits this morning, including telling an epic tale of just about everything on his mind.  Lucas recently has gotten into hearing us make up stories and trying to make up stories himself (in contrast to many years of insisting on just stories out of books).  He’ll tell a “bald eagle story” or a “gazelle story” that lasts a couple minutes.  But this morning the saga went on and on and on.  At one point in the story the Gallimimus (a dinosaur featured in a book he and Burke read around 5 am) went to visit Papa, then turned on the Christmas tree lights, only to have Papa put it in a container.  A large container with four T-Rexes.  We got out paper and transcribed this much of his story…

The gallimimus ran across the neighborhood.  And then Brooksy went really fast, and the velociraptor ran across the gallimimus.  Just then the gallimimus ran to the caravan, and the gallimimus saw a triceratops at the Burke museum.  And he also saw a glyptodon climbing up on trees.  And just then the velociraptor grabbed the gallimimus.  He was really sad.  He never went to the taxi van with the velociraptor.  And the velociraptor made a mistake… the velociraptor decided to make a mistake.  The gallimimus turned his head around, and he saw a bunch of foxes.  And the gallimimus said Bow Wow Wow.  He looked around at a bunch of pictures for the T-Rex.  And the gallimimus almost got into a crocodile, when the crocodile snapped the gallimimus.  The crocodile went along the beaches, and he looked in his pocked and saw a bunch of needles and he threw them out.  Because the velociraptor and the crocodile and the gallimimus all played together, watching the bald eagle video.  The gallimimus was very busy, that the velociraptor looked up in the tangerine sky.  When he got in the tangerine sky, he looked.  And the gallimimus went to Whidbey Island.

A key to some concepts:

Gallimimus, triceratops, velociraptor, and T-rex: dinosaurs

Glyptodon: prehistoric armadillo-like mammal

Brooksy: a dog Lucas met and loved last year

Burke museum: Seattle natural history museum, with dinosaurs

Taxi van: a highlight for Lucas of our trip to LA was going in a wheelchair adapted taxi

Bow Wow Wow: what the puppy says in the book “Little Yip Yip”

Bald Eagle video: Lucas’s favorite part of our trip to the audubon center on Saturday

Tangerine Sky: Yes, Lucas loves Lucy in the Sky with Diamonds, Caspar Babypants-style

It’s been a while since we’ve had a regular Lucas update, especially since the last one was a long-overdue review in Spanish (for our friends in El Salvador, among others.)  But it’s been a great month since his birthday, as we’ve been taking full advantage of the beautiful weather in Seattle.  Among the highlights were a trip to Snoqualmie Falls (overshadowed only by the nearby dog park); a Labor Day rally in which Lucas learned to chant political slogans and met the mayor; going to the zoo with Gramma and meeting a baby giraffe; having dinner and talking a walk in the park with our friends the Bowers, whose son Chris has the same disease as Lucas; and participating in a anti-war vigil at our neighborhood park.  See pictures below.

Among the most exciting recent developments is that Lucas is learning to read!  For so long he’s been obsessed with letters, language, and books.  Over the past few months, he’s started to put it all together and sound out words, from 3 and 4 letter words in his “Bob Books” to occasional longer words, to reading street signs when we’re out rolling around the neighborhood.  It’s so cool to watch his fascination and determination with reading, and so fulfilling to see his pride in sounding out a long word or making a connection between something he sees in real life with something he’s read about in a book.

Lucas’s focus with reading can be really amazing to witness.  We can stack up a box of Bob Books – about 12 in all – on the couch next to him and over the course of a half hour he will read them, one-by-one, carefully turning each page and meticulously sounding out each word.  When he gets to the end of a book he exclaims “nice job!” and slams it down on the floor… then slowly reaches for the next book.

On Monday Lucas starts his second year of preschool and needless to say they won’t be teaching reading to Lucas and the other 3, 4 and 5 year olds.  But Lucas gets plenty of attention to reading when he’s at home.  School promises to be an opportunity to interact more with other kids, something that is still a huge challenge for Lucas.

Another exciting development is that Lucas has decided that he likes yoga.  (As long as there’s a dinosaur, or spider, or panda bear involved, that is.)  It all started one day when Krista did a few twists and yoga activities with Lucas and he loved it.  Needless to say, given that she’s a yoga teacher it was not the first time that Krista had tried to get Lucas into yoga… but it was the first time that he complied.  She even got him onto his tummy (which hasn’t happened in years) and practiced “wagging his tail like a dog.”  Check out the video:

And here are some shots of the Snoqualmie trip:

And of Lucas and Chris playing hoops:

And from the zoo!

 
And at the Labor Day rally & picnic (w/ the mayor):

Lucas had a couple big adventures over the past week that deserve recounting on the blog.  However, we’ve been busy and so rather than trying to write something descriptive we’ll just let pictures and video do the talking.

First, it was Lowell School Mariners game night on Sunday and we braved the crowds, parking lots and elevators to get Lucas and his wheelchair up to the 300 level of Safeco Field.  Did we mention it was bat night?

Lucas developed a love of baseball following a big M’s victory (despite only making it 5 1/2 innings) and now we’ve got a new living room activity that takes advantage of the recently acquired Louisville Slugger:

Next up on the big adventure list was Lucas’s first May Day march – not his first march, mind you… that harrowing adventure was recounted on this blog 2 years ago.  But May Day is a whole different story, especially when the cops are out in full force brandishing tear gas and pepper spray.  Luckily they waited for the black bloc march a few hours later to pull that racket out.   On a beautiful afternoon in Seattle we had fun  joining the immigrant rights march with friends from CISPES and the Social Justice Fund NW and chanting “Si Se Puede!”

Lucas got tired after waiting around for a while at the start and then rolling 10 blocks… but as soon as we returned home Lucas kept the chants alive on the back porch:

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.

Big news: Lucas drove himself around our house yesterday!  It was a strange moment – at once monumental and anti-climactic.

Perhaps we should give a little background.  For families of kids who don’t walk, the first time your kid drives around in a power wheelchair is the semi-equivalent to your child’s “first steps.”  It’s something that marks the beginning of a radically different orientation to the world: the ability to go and check things out, to choose where and when and how fast you get there.  Like “first steps,” it’s something you know is coming, that other families (or in our case, therapists) talk it up for months before the occasion.

But, unlike the magical “first steps” that just happen, the first drive is an extremely planned and facilitated undertaking – usually under the supervision of multiple therapists and professionals, often in an institution that acts as wheelchair vendor.  For us it’s been a years-long process that included moving into a wheelchair accessible home, researching the market to understand what chairs might work for Lucas, finding the professionals that can help us fit Lucas to a chair, working with our insurance company to ensure that it will be covered, looking for a wheelchair accessible van, etc, etc.

Three weeks ago we had our first try when a vendor brought a power chair to the house for Lucas to try.  Like many things he encounters for the first time, Lucas absolutely hated it.  He did fine sitting in the chair when it was turned off, but the minute we tried to move it he threw a fit.  We sighed and imagined we were in for a summer of slowly, slowly acclimating Lucas to power chairs so that maybe by August or September he’d be willing to try driving.

The vendor called last week to say he’d found a loaner chair for us.  We planned a time when we both could be here to learn how to use it so that, when Lucas was ready, we’d be able to help him try.   Kevin came with a scrappy looking chair — a kid-sized seat literally strapped to a giant adult-sized base.  It looks funny and awkward, but we figured we’d put Lucas in it just long enough to measure where to put the controls so he’d be able to reach them.

We’ve found that calling something the “Special Lucas —” makes it more appealing (the hammock outside our house is the “Special Lucas Swing,” the newest stationary seating devise is the “Special Lucas Chair”, etc.) so we told him he was going to sit up in the “Special Lucas Car.”  He was not immediately sold, but he repeated slowly, “special… Lucas… car.”

And, miracle of miracles, when he got up in the chair this time, Lucas liked it.  He smiled and recited his favorite book while Kevin adjusted the joystick.  Then – surprise again! – he touched the joystick (at this point the power was still off).  When all the adjustments were made, we figured we’d push our luck.  We turned the chair on and let Lucas touch the controls again.  The chair gave a small lurch, and Lucas was unfazed.  He hit it again, and another small lurch.  And then he said “hummingbird!”

So we helped him drive into the kitchen to look out at the hummingbird feeder.  Then we suggested going outside (since it took just 20 seconds of indoor driving to put the first dent in the wall), and we all went through the door, over the ramp, and ended up playing stop-and-go on the sidewalk.  Lucas did great — he was pretty clumsy, but so were we trying to figure out how to steer with a hyper-sensitive control system.

There we were on a beautiful afternoon, standing in front of Lucas calling “come to Daddy!”  He tried, slowly motoring forward and diagonally and then around in a tight circle.  And before we could revel in the glory of it all, Lucas said he was done.  We helped him drive back inside, took him out of the chair, and turned it over to Kevin for a few minor adjustments.  And then it was time for dinner, and Lucas urgently needed to get back to his current favorite book.

We picked up Lucas’s new glasses yesterday, and he reports that they are “awesome.”  Here he is, reading in bed this morning.

We’re excited for the beautiful weather this weekend — heading up to Whidbey Island to enjoy it with our family.  This is also the weekend of the 180 mile Washington DC Solidarity Cyclers ride that CISPES has been doing for the past five years.  We proudly rode in the first three rides.  Happy cycling to Alexis, Jess, Max, Rosa, Lisa, and MacKenzie (and all the other cyclers!)  Si se puede!!

The end of year business has taken over our lives a bit, so we’ve been away from the blog too long.  Krista has had homework and finals, we’ve been busy helping with year-end fundraising for the organizations we love, and then catching up with friends at holiday parties and activist awards dinners.  Krista’s family was here for almost a week for a great visit, and Burke has been gone this week first to Seattle for a couple job interviews, and now in Montgomery, Alabama where he’s filming at an immigrant rights conference.  So we’re looking forward to the quiet of Christmas…

If Lucas were to list the amazing recent developments in our life, it would probably start with our Christmas tree (especially his shark ornament) and end with a list of the names of lots of friends and family.  Lucas could already sign “Gramma”, but last weekend he also learned to say “Aunt Megan” (he makes an “m” sign that looks like a fist and pounds his chest), and he learned to make a “c” and point at Charles (Gramma Susan’s boyfriend) whenever he came in the room.  Upon realizing that we were understanding his new words, Lucas lit up and with pride repeated the names over and over and over.  He’s now expanding his name vocabulary and signs the first letter of various people’s names when they walk in the room.

Lucas is still obsessed with books, so he had Gramma and Megan read to him as much as possible.  He’s memorized his shark book, so at this point he completes every sentence whn the reader gives him the chance.  Susan got the hang of it.  “Today my class goes to the…” and Lucas says “sea park.”  “Some fish are…” and Lucas says “pretty.”  We’ll try to get this on video, because it’s hard to describe how exciting this is given Lucas’s challenges around vocalization.  But he does it so well that when Gramma Susan paused after “In the lunchroom there’s a…,” Lucas declared “swordfish burger on the menu!”  It’s muffled, of course, but also clear as day for the close listener.  We hooted and laughed, which Lucas took as his cue to repeat the phrase a dozen more times.

He’s continuing to evolve his combination of sign language and spoken words to communicate more easily to more people.  I was sure that Burke and I would need to be doing constant sign interpretation for my family but with a little help they figured out how to understand Lucas.  Indeed, he can be pretty adamant when he’s asking for something, impatiently responding “noOOooooooo!” if anyone guesses wrong.  And if we’re right, he declares “YEAAAAAaaaaah!” with a big sigh of relief.

Part of what makes this so exciting and so complicated is that there are times when good communication seems totally out of reach.  Like when Lucas is not lying down, for example.  Sitting in his kid-kart chair seems to reduce his lung capacity, so he can’t muster the air to make sound, or even enough energy to sign sometimes.  So there are moments – especially when we’re out with Lucas – when the kid you meet on the street and the one we’re describing here do not coincide.

However, when Lucas is in the right position – and with lots of adoring family at his beck and call – he is perfecting the art of asking for things.  Combine a “Neanana,” a banana sign and the right tone of voice and you get “Nothing Could be More Urgent Right Now Than Getting Me a Banana!”… which was enough to get Gramma on the case.  Megan brought him some really great, soft, naturally scented play dough from Eugene (she knows the owner/dough maker of this cool company – check them out if you’re looking for a gift for a kid), and Lucas got really into playdough for the first time.  But even more than molding it himself, he liked the power of calling out letters and shapes that Megan and Gramma would make for him.

And then there’s the tree.  He already enjoyed the power of telling us to turn lamps on around the house, but now each morning he wakes up and, still groggy and with his thumb half in his mouth, he points at the Christmas tree and says “on!”  Throughout the day he points at the tree, grins, and says “tree!” admiringly.  And at night he asks us to bring him the shark ornament, which he pets and kisses before going to sleep.

We could go on and on.  Last night he said  “I want to play animal cards with Mommy.”  Really.  First he was signing “animal cards mommy” on his own, which meant he wanted me to set them up for him to play memory.  So I asked him to say it with his voice too, gave him the sentence, and he said it!!  I want to play animal cards with Mommy.  Amazing.  He also asks for Daddy at least a dozen times a day.  Last night I told him we couldn’t call Daddy on the phone because Daddy was in an airplane.  To which Lucas replied, “Daddy on the computer!” (meaning we should call him on skype.)

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!)