Lucas Camilo

Can’t resist posting this picture.

Lucas was a bit grumpy all weekend long, but this afternoon he was back in great spirits.  The sun was out so we went to our favorite spot at the lake.  And after Mommy and Daddy took quick dips in the chilly water, Lucas agreed to get in too.  At first it was just going to be a quick dunk of the toes, but then he loved it.  Lucas got so silly he had us both near tears.

We’re thrilled to report that Lucas’s second, third, and fourth days of school were as successful as his first.  There was singing every day, which Lucas seems to be veru happy about.  Not to mention painting, drawing, blocks, magnets, and recess.  What could be better?

On Monday and Tuesday we drove Lucas to school and Krista hung around a lot at hist class, or wandered to a nearby coffee shop and worried about how Lucas was doing.  Then we picked him up and drove him home.  The great part of that arrangement was that at least one of us could spy on Lucas.  (Which we pitched to the staff as “helping.”)  More than once, Krista came into the classroom only to find Lucas sitting up in his chair in the middle of 11 other wound-up kids, shouting, running, and playing.  And, though it’s not like Lucas to enjoy new and unknown chaos, he looked like it was really enjoying it.

One of the best things about Lucas’s school is that it is a preschool-fifth grade elementary school that was built to include kids with physical disabilities.  So while there are lots of kids running around who have no disabilities, there are also plenty of kids with lots of extra gear, including another little girl with a tracheostomy in Lucas’s class.  And though Lucas is the only one with a wheelchair in his class, there are kids learning to drive power chairs in the halls, and all over the building storing you can find kid-sized walkers, standers and special seating devises in various corners and crannies.  The giant playground structure – the kind that would usually have lots of steps, ladders or ropes – is ramped and therefore totally Lucas-accessible.  We found him Tuesday afternoon up high, with his nurse pushing him over the “hanging bridge” part of the structure.  When we asked him later what he did at school, he just repeated, “We went over the bridge!”

The low point in the week for Lucas was the arrival of the school bus on Wednesday morning.  We had tried to talk it up to get him excited (predicting that it would be scary for him, and maybe us too).  The short bus pulled up, and everything was fine until the driver started to lower the wheelchair lift.  The noise and maybe protrusion of this huge contraption freaked Lucas out, and he shed huge, heartbreaking tears.  In the middle of it all, Krista asked the driver his name — Lucas likes knowing people’s names — and we learned it was Victor.  That was a turning point, maybe because one of Lucas’s favorite people in Washington DC was nurse Victor.  So through his tears, he signed the letter V and agreed to get on the lift.  By the time Victor has tied Lucas’s chair down in the bus, Lucas was calm and ready to go.

Lucas rides the bus with his nurses, so for better or for worse we can get up-to-date status text messages.  On Wednesday that meant learning that what should have been a 25 minute bus ride took almost an hour (Victor got lost) and that Lucas totally lost it at the end.  But the afternoon ride was quick, and by Thursday morning Victor had smoothed things out significantly.  The jury’s still out on whether or not we’ll keep sending Lucas on the bus before and after school, but the fact that we were able to let go and trust the driver, the nurse, and the universe with Lucas on a school bus felt like a major milestone in our lives as parents.

We’ve felt so incredibly proud of Lucas and his first week of school.  New experiences tend to scare him, so the fact that he was so open to so many new people and places was amazing.  Honestly, we feel very fortunate about his transition to school being so smooth thus far, especially given how much other special needs families often struggle with this transition.  We know that many challenges that still lay ahead, but for now it’s ok to bask in the goodness of the moment.

We want to thank you all so much for your love and support — via blog/facebook notes, phone calls and cheers — as we celebrate Lucas’s major achievement!

There was red playdough, clothes-in-cubbies, nervous parents, circle time, bubbles, the ABCs, introductions, teachers chasing run away kids down the hall, and lots more first-day-of-school mayhem.  And Lucas seemed to soak it all in.  He was cool through the parts he didn’t like (bubbles) and thrilled when the ukelele came out.  And right as the school morning ended – a full hour and a half earlier than his usual nap time – Lucas crashed.  If it all goes as well as today, or even nearly as well, this school thing should work out just fine.

Here are a few pictures from the day.  Pay no attention to the start date on the reader board — we were not two weeks late to school!

 

Monday is Lucas’s first day of pre-school.  Needless to say, we’re both excited and quite nervous.  As the day gets closer we can’t help but think about what it really means that he’s starting school.

As you can probably tell from our last few posts, things have been going really well lately for Lucas.  The number of excursions and new adventures we’ve had in the last 2 months is remarkable, especially for a kid that not long ago said “no!” emphatically every time we suggested leaving the house.  We’ve felt extremely fortunate for the beautiful weather in Seattle and some extra flexibility in our schedules over the summer… but that would have meant very little for us if Lucas’s health, endurance or attitude didn’t permit us to actually leave the house very often.

But the fact that Lucas is enjoying going out is important for another reason: it makes us feel like school might really be a good thing for him.  Between his weekly music class and a camp at the nearby Children’s Playgarden, Lucas has already been in some school like situations and he’s done pretty well.   It’s still hard sometimes to imagine him interacting well with other 3 and 4 year-olds, who have a tendency to operate in a gear that’s too fast for Lucas.  One of the things we’re very nervous about is getting Lucas in positions that allow him to be communicative and interactive.  For a kid with extremely low muscle tone this is a huge challenge, but getting outside in a variety of situations is great practice for school.

Of course, there’s one big difference: on our recent outings both of us are there accompanying Lucas, and we’re experts at knowing when he’s upset because of a breathing issue, or bad positioning, or just because he’s being an impatient 3 year-old and we failed to chose the right book.  And here’s the kicker: when he gets settled into school, we won’t be there.

Yes, it’s true – parents can’t actually spend every day of school with their children!  We’ve joked that Burke will be tucked in the corner of the classroom with his laptop blogging and live-tweeting Lucas’s first day of school.  Or that Krista will be planted in a tree a block away with binoculars, prepared to intervene should someone forget to put the little oval-shaped pillow under Lucas’s neck when he’s sitting up.  In fact, Lucas’s teacher at Lowell made a home visit last week and assured us that one or both of us could in fact be there during his first day of school.  But what about the 2nd day?!?

Lots of parents go through separation anxiety when their first child heads off to school, and yet for Lucas there are so many more levels of challenges.  A couple years ago, we didn’t even know if Lucas would ever be able to go to school.  We had no idea if his immune system could handle the germs, if he’d have the physical stamina to be out of bed for half a day, if he’d have the cognitive and social skills to enjoy school, or even if he’d make it this far.  And now, here we are.  All signs point to him being ready, but there is still the fact that Lucas has so many very specific medical and physical needs.  Of course there will be a nurse accompanying Lucas – two different ones who already know Lucas and will alternate days.  They’re good and we trust them, but whereas they’ve spent 8 to 12 hours a week with Lucas for the past 6 months, we’ve spent just about every minute with him (collectively) since he was born.  When it comes to a slight change in head positioning that will make all the difference in his enjoyment, we’re not sure they can read the slight fogging over in his eyes as quickly as we can.

And we just have to accept that Lucas’s nurses may not know as fast as we do whether Lucas is turning grey because of a a medical emergency or because he’s throwing a small tantrum.  It’s a crazy thing to accept, but if we want Lucas to experience the world beyond the two of us then we have to.  Of course we’ve already been trusting nurses with medical/childcare tasks every time we leave Lucas home alone with them.  But our house feels like such a controlled environment compared to the chaos of a preschool classroom, not to mention a school bus ride.  The first time we leave Lucas at school will be the first time Lucas has been away from home without at least one of us.

So tomorrow morning the adventure begins!   We’ll pack Lucas off to school with his cutest first-day-of-school outfit, new backpack, wheelchair, vent, suction machine, back-up suction machine, nurse, and a change of clothes to keep in his cubby.  If you’re on twitter check out #lucasfirstday (just kidding).

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…

Like many young kids with disabilities, Lucas has been getting some kind of weekly therapy (in his case speech, physical, and occupational) through the federal “Early Intervention” program since we brought him home from the hospital 2 1/2 years ago.  The program is for kids 0-3 years old, so as suddenly as it all started, the many weekly therapy appointments disappeared the week of Lucas’s birthday.  He’s not done with therapists — they’ll restart in the fall through the school district and other programs — but this change has freed up a lot of mornings and afternoons for us over the last two weeks, and we’ve filled them enthusiastically with many fun summer adventures.

Sadly, the Seattle public libraries were closed for a furlough week due to budget cuts.  But some folks filled part of the void by setting up the “People’s Library,” (an idea that emerged from the Occupy movement), so we decided to take Lucas.  He got really excited when we found some good books, including a book about spiders and another called We Love Dirt.  Now when we read one he says “You got this at the People’s Library!”  A reporter from the Seattle Post Intelligencer happened to be there that day, and Lucas and Krista made his online story.

We took Lucas back to the Seattle aquarium last weekend where he happily revisited some of his favorite sea creatures: the jellyfish, the clownfish, and the seals.  We also made two trips to the zoo.  One was to visit the penguins (of course) and to indulge his newest animal fascination: bugs.  He was particularly interested in the cockroaches (in part because he likes saying “cucaracha”) and he looked far and wide for a dung beetle (“escarabajo pelotero” in Spanish – he’s still working on that one.)

Last Wednesday night we took Lucas back for the Roseanne Cash “Zootunes” concert.  We went with new friends, and Lucas was mostly excited about seeing Azi, the nine-year-old girl who came with us and brought Lucas one of her old Biscuit books.  (Biscuit is a little dog in a series of beginning reader books that Lucas enjoys.)  He paid some attention to the opening band, but their jazz/lounge sound didn’t get Lucas clapping like a good Pete Seeger or Casper Babypants tune would.   He was happier when Roseanne Cash got going, and we took turns picking him up and dancing around.  He looked so happy rocking out as the late summer sun set, and others seemed to notice too.   We got lots of stares from people scattered around us on the grass, though it was unclear if they were sneak-staring because they were shocked/dismayed at all our machinery, or if they were just smitten with Lucas.  Either way, it felt so wonderful to be able to take Lucas to Zootunes and hang out with new friends that the stares really didn’t matter.

Around 8:00, as the sky darkened and the impressive full moon came up, we declared it bedtime and started loading Lucas up to go.  But then the band started playing their most rocking tune of the night, and Lucas got a second wind.  He lit up and clapped to the rhythm as we rolled off the lawn.

We’ve also been back to Seward Park a few times recently, with Lucas continuing to bravely dip his toes in the water.  We even slipped in deep enough that water got in his vent circuit  and caused a temporary malfunction– oops.  Don’t tell the respiratory therapist!

And then on Sunday we got to see Erica, the nurse at Washington Hospital Center who was on duty in the NICU the day Lucas was born.  She and her husband were visiting Seattle, and we met up with them in Lincoln Park, a big foresty area right on the Puget Sound, and laid a blanket out on the rocky beach.  It was great to see Erica again – she and Amy will always be near and dear to our hearts because they cared for Lucas and believed in him from the very first hours of his life. Lucas seemed to know it was time to show off just how far he’s come since then, so he immediately busted out a singing medley of Itsy-Bitsy-ABCs-Mister-Rabbit-La-Granja.  Erica was such an appreciative audience, he might have kept going forever.  Except there were crabs and shells and dogs walking on the beach, so he stopped to admire the wildlife.

Later that afternoon we decided that a good holiday weekend excursion would be berry picking.  So off we went to the only blueberry patch around still open for the season, which happened to be only about 15 minutes away in Bellevue.  We grabbed a couple buckets, rolled Lucas out into the middle of the blueberry patch, and took turns digging deep into the bushes for the last of the blueberries.  Lucas found a nice place to lie down in the middle of it all and got really into the idea of “jumping blueberries,” which involved a dozen berries in a Tupperware container flipping all around (a video of the absolute enjoyment this led to is coming soon.)  Later, Lucas allowed us to stuff blueberries into his mesh baggy – usually reserved for banana – and he spent much of the evening chewing on them as he recounted the day.

And finally, on Labor Day we decided it was time to get Lucas out to a good old fashioned political rally.  (And we’d been looking for a reason to take Lucas on the Seattle Light Rail.)  Predictably, he freaked out at first when we got on the “train,” but after about five minutes of looking horrified and crying huge, fear-filled tears, he settled in and was OK with the train (though talking to Gramma on the phone later he reported that he liked it.)  He had a similar reaction to downtown pedestrian/car/bus/street musician noise, and he begged to go home (his cries to leave are “Van!  New house!  Van!  New House!”)  But then we found an outdoor table at the back of the immigrant rights rally, so he got a chance to lie down and read.  As soon as we pulled out the Dirt book, he settled in and acted like he could stay all day.  Back in early summer, one of our games was to ask Lucas “who’s a little revolutionary?” when we put on his red-star hat.  He’d answer “Lucas is a little revolutionary!” (which sounds something like “Wucas is a wittle wevowutionary!”)  Given that he ignored the rally and refused to even say “si se puede” we gave him a good talking to about his revolutionary priorities on the way home.