Lucas Camilo

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!!

Ever since Lucas got into Volume 13 of “Signing Times” – the videos for kids learning signing language – he’s been obsessed with the idea of school.  He can do the signs for “teacher” and “backpack” (among others) at the same time as he chants the words and grins.  So it was not surprising that he got excited this morning when we told him we were getting in the car to go visit an actual school.

The public school in question is Lowell on Capitol Hill.  Lots of people have mentioned it to us as the place best prepared to handle kids like Lucas with complex special needs.  With his 3rd birthday fast approaching and the process of preparing an IEP (Individualized Educational Program) underway, we called up the person in charge of Seattle special needs pre-school education a few weeks ago.  After hearing about Lucas she suggested we visit Lowell and we set up an appointment.

Not sure what to expect, we marched in at 9:15 this morning and were immediately blown away.  There was the usual hustle and bustle of preschool/elementary school (Lowell goes through 5th grade), with kids running around the halls and teachers trying to keep them under control.  But within two minutes we also saw something else: multiple kids in wheelchairs, or using walkers, also participating in the action.  And there were various special needs seats and mobility devices scattered about the halls as well.  Here was a rare place where Lucas – trach, vent and all – was not something to stare at but rather just another kid getting ready to learn.

And it got better.  All the people we talked to – teachers, aids, therapists and administrators – were welcoming and fun, excited to meet Lucas and aware that he would be a great addition to their classrooms.  There are two preschool classes for kids with special needs and we were able to visit the morning class where Lucas got to meet a number of the kids.  They crowded around to say hi, and Lucas waved and said hi back.  He seemed a little anxious but also enthralled by the attention, and repeatedly showed off his signs for “teacher” and “school”, while also guessing the first letter of everyone’s name that he met.

We spent 20 minutes in the classroom observing and chatting with the teachers.  Lucas got to roll up and join the class for a ABC song accompanied by Mr. Chris on the ukulele.   He even clapped along for a little while before deciding he was all done and then asking to check out books in the mini class library.  Later we visited a class for older kids with special needs and continued to walk the halls and peak in on the therapy room and cafeteria.  Lucas met a young girl named Maria who appeared to have cerebral palsy and was working on controlling her power chair with a teaching assistant.  He made the “M” for Maria and she smiled.

Lucas’s birthday isn’t until August and he won’t start preschool until sometime in September, so there’s plenty of time to keep checking out other possible places.  But as we walked out the door from Lowell we looked at each other and said “That’s where Lucas is going to school!”  It felt good all around.

First – thank you to everyone who read through our last post and offered support for our journey of fighting with health insurance to get Lucas’s needs met.  The good news is that we’ve won a critical battle — Lucas’s second private insurance plan has agreed to pay for his nursing care.  It’s approved only through August, but it’s likely to get re-approved fairly easily every few months.  We spent the week breathing many a sigh of relief.  We knew we’d get coverage eventually, but it’s nice not to have devote any more time and energy to the battle for now.

We’re remiss in posting here because we went from feeling fairly hunkered down and far from friends to having them all sleeping in our house.  Krista’s friend Kathy from the Bay Area was here for a couple days in the end of April.  Then – all in one week – we had visits from not one, not two, but six friends visit from DC and Philly.  (It was awesome to see you Dan, Dana, Carol, Annie, Max, and Jess!!!)  It was especially fun for Lucas to get to show off the new books he’s memorized, and exciting to show our guests around town.  The weather’s made a dramatic turn toward spring, so we took people on walks to the lake, and Lucas got to show Max and Jess around the Seattle aquarium.

Maybe not coincidentally, Lucas has recently discovered the word “awesome.”  So one of our favorite new games around here is “what else is awesome?”  Lucas loves words that get extra stress, emotion, or oomph behind them, so when he tells us that clownfish are awesome, he says it with feeling.  “Clownfish are aaaaaawwwwe-sooooommme.”  And then we ask him “what else is awesome?”  And he names another species of animal, like “ruby-throated hummingbird is awesome” or “macaroni penguin is awesome.”  And then he goes through his favorite books, starting with “Ridiculous is awesome.”  He’s started asking us to chime in too, by saying “mommy do it,” or “daddy do it.”  Having your two-year-old lead you through an exercise in gratitude is indeed awesome – semi-religious and totally hilarious.

Another highlight of the past couple weeks have been our first two NW hiking adventures with Lucas.  On Saturday we went back to Seward Park, this time for kids activities related to international migratory bird day.  We arrived just in time for the hike up to see the bald eagles nesting.  We were really excited to find out that the park had paved trails all the way up, so we joined the other families.  At the top of the hill we indeed got to see a bald eagle pair, with the mother sitting on eggs in her two-ton nest while the father flew around the surrounding trees.  Lucas gave a small grunt to acknowledge the eagles, but he mostly asked for hummingbirds.  So at the end of the hike, having spotted exactly zero hummingbirds, we bought him a new hummingbird feeder.  And he was thrilled.

And finally – your bonus for having read this far – we bring you Lucas’s first hike in the foothills of the North Cascades.  We’re getting pretty adept at packing for a medically complex kid.  We bring vials, tubes, catheters and syringes of sterile water.  But when a major poop incident struck, we were ill prepared – no back-up pants!  Lucas, fortunately, is still too young to notice how hilarious the whole thing was.  (For the record, we did eventually put Krista’s jacket over his legs.)