Lucas Camilo

Cha-Cha the penguin was Lucas's favorite house-warming gift

Saturday was our Seattle house-warming party and it was a great!  Thanks to everyone who stopped by and brought gifts.  It was especially “warming” to know that we actually know lots of people here – from family, to elementary/high school school friends, to people we’ve gotten to know through organizing, to recently-encountered neighbors, many of whom also stopped by.Lucas was a bit overwhelmed by the party at certain moments, especially the abundance of little kids running around, but overall he was a great sport.  And it was nice for us to introduce him to more people.

We continued to be awed by Lucas’s intelligence, creativity, and sense of humor.  Sometimes it’s a wonder to see the mind of a two-year old at work.  A couple recent examples:

* Krista was on the phone with Aunt Megan and Lucas was growing impatient with the chit-chat.  Megan let out a belly laugh, which sounded almost fake, and suddenly Lucas lit up and said “Heh-Heh-Heh!”  Krista and Megan stopped talking and asked Lucas, “did you just laugh like Aunt Megan.”  Lucas’s response?  A huge smile and then “Heh-heh-heh!”  Now he’ll do it on command, and when everyone in the room cracks up he’ll smile and repeat “heh-heh-heh!”, pleased with himself at being the life of the party.

* Lucas loves letters and words and has come up with various ways to enjoy and explore them.  People who have seen him in action know that he can spell “p-e-n-g-u-i-n” with ease, signing the letters as he also speaks them.  The penguin feat is memorization of course, but now he’s starting to actually sound out words and understand how letters go together, predicting vowels after a consonant starts a word (even if he often gets the vowel in question wrong at first.)  He also really loves saying long words and has whole sections of books memorized.  One of his current favorites is actually an adult book about inter-species friendships.  He can tell you that there exists an elephant “sanctuary” in a place called “Hohenwald, Tennessee” where an elephant and a dog, “stepping over social traditions,” became best friends.   Finally, our friends Sha and Alexis recently enticed Lucas during a skype chat to attempt repeating various tongue-twisters (thus the title of the post) and he loved it.  Because of Lucas’s low-muscle tone and respiratory issues its still often hard for most people to understand what he’s saying, but the effort, excitement, and intensity with which he goes about exploring letters and words is really awesome to witness.

* The other day we took a great walk in Discovery Park and as we were heading back to the car we put our arms around each other and asked Lucas if he was having fun with mommy and daddy.  He looked up at us and said “love!”  Lucas’s concept of love derives primarily from his favorite penguins Roy and Silo, two male penguins that fell in love in the Central Park Zoo and eventually raised a chick together (with the help of the zoo keeper.)  Upon seeing us hugging like Roy and Silo Lucas suddenly made the connection that we too were in love.  We asked him if mommy and daddy love each other.  He said “mommy-daddy… loovvve” and then commanded us to hug again.  We did and he got a big smile on his face, and when we tried to wrap up the game and continue walking (it was a bit chilly that morning) he exclaimed “hug!” again, and then sat back to watch, admiring his work and how happy he had made us.

Of course, he can still be completely stubborn and exhausting to be around at times as well.  For example, despite Lucas’s apparent literary pretensions the top book on his reading list right now is one called “Charlie Clownfish and Annie A.”  We have piles of inventive, colorful, funny children’s books around the house and he picks the totally senseless and absurd one… to read over and over again.  Yesterday his nurse must have read it at least a dozen times, with Lucas insisting “AGAIN!” each time the book was completed.  Oh well…

A walk in Seward Park, near our house in Seattle

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.)

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”…

On the home front, Lucas and Burke had a good weekend in Washington DC – Krista was missed, but support from nurse Florence on Thursday and Friday allowed Burke to make it to work and meetings, and left the entire weekend for some quality time.  Nice weather in the mornings allowed them to lay out on the front lawn — swinging in the tree while battling mosquitoes — and some visits from friends gave Burke the occasional respite from non-stop book reading.  Lucas was in good spirits throughout the weekend and he (mostly) enjoyed the cranked up selections from Burke’s vinyl record collection (the harder-core punk rock sometimes got the “all done” sign.)  Whenever Krista called he would do the sign for “mommy” (thumb touching chin with fingers extended) and smile broadly.  He also learned to kiss his favorite new mini-stuffed ducky on the beak, which is pretty funny to watch.

Lucas made a lot of noise over the weekend too.  He isn’t always in the mood to verbalize but his voice is getting louder when he decides to pull it out.  He often tries to verbalize words for animals when he makes a particular sign.  He can now speak emphatically the words “hi,” “in,” “on,” and “aaat” (for cat).  He also tries to say dog, which comes out as “nooooan” while he pats his thigh to make the sign for dog.  It is ridiculously cute.

Thanks to everyone for the outpouring of love and support (this is Krista writing again) in response to the post about my dad.  I had an amazing trip to Jackpot, and it felt wonderful to travel with all your support — texts and emails and calls and letters and comments on the blog.  The place was stunning, with wide-open, huge-sky beauty.  I traveled there with my uncle Bill and aunt Becky, my cousins Garrett and Nolan, and family friends Rogelio and Gloria.  Rogelio worked closely with my dad for nearly 15 years, and he built a cross to put at the sight of the crash shortly after my dad died.  So part of the trip was about finally placing the cross (which is featured in my pictures from the trip).  Visiting the place of his crash brought me a sense of peace that I hadn’t expected.  The northern Nevada plateaus were so lovely that who knows, maybe we’ll take Lucas one day.

Have we mentioned that Lucas LOVES DUCKS? He says (signs) duck when he first wakes up in the morning, when he’s happiest throughout the day, and then later when he’s grumpy, and then again as he’s falling asleep at night. It’s tough to say what he loves more right now – ducks or books – since he usually signs the two together. Meaning, “get me a duck book.” He’ll even throw in a “please” and a “thank you” if he doesn’t see you moving quickly enough to get him a duck book.

Lucas’s fascination with ducks has been growing over the past few months. First he learned the sign and loved quacking his fingers together. Then he learned to identify ducks in his books, and pretty soon he was rapidly flipping past all the other animals until he got to the duck page of any animal book. When he lands on the page with downy, yellow ducks, he points, smiles, and quacks his hands proudly. He’s now able to “read” himself more pages in the animal books (signing cow, butterfly, sheep, cat, and mouse too), but he still pauses longest on the duck page.

So it occurred to us recently that he might like real ducks. Over Memorial Day weekend we went with our friend Alexis out to the Kenilworth Aquatic Gardens – a preserved wetland area with old lily and lotus gardens along the Anacostia River. It was great for Lucas because there was over a mile of accessible boardwalk that wound through the wetlands, but the closest we found to ducks were a family of geese. The growing goslings looked a lot like ducks to us, but either the sun was in Lucas’s eyes or he just wasn’t buying it.

So this weekend, with Nonna and Papa in town visiting, we decided it was time to see some real live ducks. On Saturday morning we packed Lucas up early  — it’s been humid and in the 90s for the last week — and beat the crowds to the bird exhibit at the zoo.  (For some strange reason the ducks are not a featured animal at the National Zoo and thus we had missed them the couple other times we’ve wandered around.)

This would be a great story if Lucas had gone crazy when we finally saw ducks. But in fact, his reaction to the ducks pretty much matched their reaction to us. About a dozen ducks floated peacefully around three small ponds in the shade. A couple stood on rocks on cleaned their feathers. A mommy duck led a pack of tiny babies through the pond. Lucas looked intently, and with our encouragement of ducks! ducks! ducks! and quack! quack! quack!, he eventually said “duck.” Unclear if it was because he was happy about the ducks in front of him — maybe totally awe struck — or just to get us to stop quacking at him.

We later found ducks hanging out with the flamingos, and they were fun to watch. But soon Lucas gave us the “go” sign, and he actually looked happiest when we were cruising around, stopping and going every 10 steps on his command. So the jury’s out on real ducks. But, of course, as soon as we got home he was ready for a duck book.

And Nonna and Papa have come up big for Lucas in the books category, too.  Since they arrived on Thursday he’s had them reading him books for hours on end. And he’s also gotten some good  sessions in the swing as well as endless singing of “Old MacDonald,” with Lucas requesting “duck” for every verse. (Thanks Nonna and Papa!)

After some recent meandering posts that focused more on us (moving to the west coast, causes to donate to, daddy reflections, etc) we’re ready to get back to our bread and butter:  Lucas!

The short-lived fever and cold a couple weeks ago did nothing to slow Lucas’s increasing ability to wow us with his communication skills.  His sign vocabulary continues to grow – he can now sign at least half a dozen animals (duck, cow, and butterfly being his current favorites).  He’s learned “car,” “bicycle,” and “go” all in the last week.  He can point at his mouth or trach to tell us he wants either one suctioned, often alerting us to a growing clog in his airway before we or his monitors sense any change.  He can say “yes”, “no”, “more” and “all done,” and he’s even modified his sign for “more” to a tiny, energy-conserving but very deliberate movement of his thumb and forefinger.   He can say Mommy and Daddy, though he asks for us far less often than he requests his two FAVORITE things: swinging (we use the sign for play, which is kinda like “hang loose”) and reading books.  He sometimes confuses himself trying to figure out which one he likes more.  The other day we used a bungy chord to hook his swing to a tree in the front yard which led to lots of smiles and frantic “hang loose” signs every time we tried to stop.

We’re sure that the ability to suddenly communicate with your toddler, using words instead of guesswork or telepathy, is an amazing experience for any parent.  But the fact that Lucas has such specific, immediate needs that go beyond food, warmth, and love makes it all the sweeter to be able to ask him what he wants and needs.  In particular, we’re now able to ask Lucas “do you want a mouth suction” before we flip on the machine.  Sometimes we can see the drool pooling up, and Lucas – who used to love a good mouth suction – will sign “no.”  Sometimes we respect his desires but other times, if it looks like he’s having trouble breathing or at risk of aspirating, we override his “no.”  But it’s still a conversation, which feels amazing.

We used to call Lucas the most easy-going kid on the planet, never complaining about anything.  But with his increasing ability to communicate, Lucas is showing us that he actually has strong preferences and that he’s no pushover.   We know this because for the past two weeks he’s been signing “book” over and over and over again, good-naturedly but repeatedly until someone brings him a book.  Then, he often takes one look at the book we’ve chosen and signs “no.”  And then “book” again, meaning we should draw again from the pile.  Lucas’s two favorite books right now are “One Fish Two Fish” and “Baby Clifford’s Animal Friends,” though most Dr. Seuess books will do the trick at this point.  Still, Lucas often nixes 5 or 10 books in a row before we come to the one he wants.  And then he “reads” it, signing “fish” or “hat” or “car” when he gets to the pages with those pictures.

On top of signing, Lucas is beginning to use his voice to communicate.  His vocalized expression-of-choice is still “na-na-na-na,” but he can also say “ma-ma,” “yeah,” “nah,” and even on occasion “da-da.”  He’ll sometimes even sing different variations on these sounds for an hour at a time, experimenting with pitch and volume and tone of voice.  However, every time his speech therapist comes over (with the occupational therapist) he goes completely silent, so they’ve been skeptical when we say he really can talk.  But then yesterday Lucas finally let loose and showed off his verbal abilities throughout his hour-long session.  Mostly it was his ability to catch onto things they were saying that stunned them so much that they started speculating that Lucas may be a small genius.  We’re pretty sure of it.

Of course none of this is easy for Lucas.  If he’s lying in bed he can reach up to his face to sign Daddy (thumb on forehead) or hat (hand pats top of head), but he can barely reach his chin when he’s sitting up and his arms are lying on his tray.  Indeed, his limited range of motion will certainly make the variety of sign-movements more difficult for him as he adds vocabulary.  But already he’s showing such great adaptability and willingness to improvise with communication that we’re sure he’ll be making long speeches about war and peace, disability justice, and tax policy (among other things) soon enough.

here’s a video of Lucas practicing signs (parental advisory: explicit content)

Lucas had a great week last week, relishing the fun and power of his increasing vocabulary. His favorite sign has become the one for “all done” which he uses all the time, often times when he’s upset about something or sick of a game.  In effect, the sign is Lucas’s way of saying “no” and he’s perfected it just as he’s become more opinionated about things (or maybe he’s been opinionated for a while and just hasn’t had the tools to express himself).  The “all done” sign involves holding his hand up with fingers spread and moving it from side to side.  But Lucas doesn’t just use “all done” when he’s pissed – he also employs it when he’s in a good mood, at which times it’s followed immediately by the sign for “more.”  Anytime Lucas likes something – swinging, blowing kisses, singing, looking at himself in the mirror – he gives an “all done” at the peak of enjoyment, meaning someone needs to stop the swing, or the kisses, or the song, or pull the mirror away.  And then, as soon as we’ve stopped whatever it was that we were doing, he brings his mini-fist up and shakes it emphatically to make the “more” sign at which point the action resumes. When he’s really motivated he’ll even heave up the second hand and bring his hands together to make the full, official two-handed “more” sign as he beams with pride.

Our friends Daniella, Gabe and Rafi visited from New York last Monday.  It was a summer-like afternoon, so we sat out on the lawn for hours and grilled up gardenburgers (and shared our second batch of delicious sauerkraut.)  Rafi is about to turn one and like most kids his age he’s full of exuberant energy almost all the time. Unfortunately, Lucas does not identify with a small kid who is constantly in motion, so he gave Rafi the not-so-happy “all done”sign almost immediately when he came in the door. Fortunately Gabe indulged Lucas in an epic game of “all-done/more” while swinging in his chair, and after that Lucas seemed to lighten up and act at least a little more open to Rafi.

Daniella mentioned that kids at this age are learning an average of one new word every two hours, and Lucas seems right on track. Just in the last week he’s learned signs or hand motions for nearly a dozen new things, and he constantly surprises us with words he understands. Along with “all done” his favorite gestures right now are the two-handed sign for “more”, his modified sign for “dance” (the index finger bobbing up and down) and “two fingers” – touching his index fingers together with pride, something that, as far as we know, has no meaning other than “aren’t my fingers cool?”

"I guess Rafi isn't such a bad guy after all"

It’s been a busy time for us lately and we haven’t had much time to update Lucas’s blog.  But the little-guy-who’s-not-so-little-anymore has been doing great, making tiny strides that to us seem huge, and wowing all those around him.  Krista’s mom is back in town for a visit and, having not been here for a few months, was excited to see Lucas’s latest tricks.  The finger wag that we mentioned before has become a hilarious addition to his repertoire, and you can now sing “If you’re happy and you know it” with Lucas in your lap and go on for a good 10 minutes: from “wag your finger” to “touch your tummy” to “make a kiss,” Lucas is right on cue with the motion needed to show that he’s happy, and if there’s any pause in the action then he’ll immediately start flipping his hand in the sign for “more.”  In fact, these days as you get close to the end of a book or a song, Lucas puts his hand in the air with his fingers extended and clenched together, poised to make the “more” sign the moment you stop doing whatever you’re doing.  It’s really cute.

Among those most impressed with Lucas’s recent developments are his therapists, and indeed they’ve played an important role in his progress, both in terms of increased movement and ability to interact.  It’s been a while since we’ve talked specifically about the therapists, and it’s worth mentioning them by name as we’d most certainly recommend them to other parents looking for physical, occupational, or speech & language therapy.  Erin has been with us the longest, having taken over Brown Bear Home Therapies from Evan last summer.  Erin is a physical therapist who now comes to our home twice a week, and she’s been working with Lucas to develop strength in his arms, legs, and core, as well as coordination in his movements.  She’s a real believer in Lucas and often chides him when he gets lazy and doesn’t push himself to do something that she knows that he can do.  By the end of a session with Erin he’s usually totally exhausted and ready for a nap, often pulling his arm over his face to indicate that he’s done, then adding a “bye bye” wave if Erin didn’t get the hint that he was ready for her to leave him alone.

More recent additions to Lucas’s team are Debbie (a speech/language therapist) and Erika (an occupational therapist) who together make up the home therapy company Eat, Speak, Play! It took a few sessions for Lucas to warm up to them – the first time they came he freaked out at the sight of big, new toys, and refused to wipe off the angry face for an entire hour – but he’s been really hitting his stride of late.  Debbie and Erika focus on communication, and working together they get Lucas into positions where he’s able to express himself – through signing, vocalization, and via the iPad.  Maybe they’re just being nice, but lately Debbie and Erika have been totally blown away by Lucas’s progress and they keep saying over and over again how smart he is.  We’re pretty amazed too; despite all of his physical limitations Lucas seems to be catching on to everything so fast and clearly understanding the world around him.

As we deepen our relationships with the therapists, we were all sad this morning to wave a collective goodbye and happy travels to Victor (Lucas’s nurse since December 2009) who is taking a month off to visit his native country of Sierre Leone.  April 27 is the 50th anniversary of independence in the African nation, and Victor is returning for the celebration, and spending the whole month there along with his fiance.  We’re excited for him, but Lucas will miss Victor’s high-5s and his loving adoration, while we’ll miss our collective morning rants about local news and debates on international politics.  In his place a new nurse named Sarah will start coming to our home next week – the first nurse other than Victor or Florence to spend significant time with Lucas in almost a year.

Though winter has returned to Washington DC for a few days, we’re looking forward to a good, restful weekend with Gramma Susan.  Yesterday Lucas and his Gramma snuggled up and took an afternoon nap together, and if it really snows on Sunday we’re guessing Lucas will demand “more” naps on Gramma’s lap.