Lucas Camilo

We’ve been busy lately – getting unpacked and moved into our new place, hanging out with Lucas and family over the holidays and then getting back into the school routine, and now getting prepared for a baby to show up in just a few weeks (!).  But in the midst of all that, we’ve been excited to realize that Lucas is slowly making friends.

Lucas’s social life is hard to describe.  With us, and the adults closest to him, he is charming, funny, stubborn, and very fun to talk with if you’re willing to talk with him exclusively about the things he is interested in (read: dinosaurs.)  Lately his verbal communication has gained new territory, including using first person pronouns to refer to himself much of the time (a huge shift from six months ago) and using phrases like “I like…” to tell us about preferences.  People often assume Lucas is a cognitively typical kid, but the truth is that when it comes to conversation Lucas is not like your average 5 year old, and that is not just because of his physical limitations on speech.  We’re used to it and often just grateful that he speaks at all.  But there are times when of course we wish so much he had more of a range of conversation so we could ask him about feelings, hopes, desires, etc.

And even more challenging (at least for us) is to see Lucas clam up around most other people, so they can’t even see the smart or hilarious Lucas that we get to see.  Often he’ll be cracking jokes with us – making up silly words, coming up with random ideas like “what if we name the baby ‘Dreadnoughtus’!?!” (that would be the most recently discovered, massive dinosaur.)  Then, when a friend comes over to visit, he’ll get quiet.  And at school we hear he rarely spoke for the first two months.

My biggest fear about kindergarten was that all the other kids would make friends with each other but not Lucas.  Part of that was about knowing how little he talks with other kids, and part was knowing that kids’ fear of difference could be a huge barrier for Lucas.  But all that worry seems to have been for naught.  First, Lucas has never shown or told us that he’s worried about making friends.  And secondly, kids have gravitated toward Lucas.  If you ask Lucas who his friends are, he’ll consistently name three kids in his class.  But then recently he’s started naming other kids – kids who’s names I can’t even connect with faces yet.  I don’t know how five-year-old friendships form, but it seems that lots of verbal communication isn’t a necessary component.

Since he’s making friends, we decided in late November to venture into the world of play dates.  Lucas has never had unmediated time with other kids, mostly because the only kids who come over are his cousins or our friends’ kids, so all of them come with parents.  And if he interacts with them it’s all through us doing a lot of interpreting and helping facilitate play.  So when I called the first mom to see if her son (I’ll say “J” since I haven’t asked these kids’ families for permission to write about them) could come over to play, I was as nervous as asking someone out on a first date.  What would happen?  What if J was indeed into Lucas, but Lucas didn’t reciprocate?

Burke was out of town, so when J showed up it was just the three of us.  I had Lucas up in a chair that sits on the couch with a stack of dinosaur books.  J came in, said goodbye to his mother, and sat down next to Lucas.  He was shy with me in the room, so I wandered into the kitchen.  And then he started talking to Lucas, asking him which book he wanted to read.  Lucas answered, J didn’t necessarily understand, but neither of them seemed to care.  So J picked out a book and started “reading” it to Lucas.  Of course he’s a kindergartener, so he was mostly pretending to read.  I could hear Lucas correcting him on some of his dinosaur identification, which again J didn’t understand all the time.  But sometimes he did, and Lucas seemed to either not care that J didn’t understand all the time, or maybe he just appreciated that they were trying.  The amazing part for me was to hear Lucas actually talking to another kid unprompted, and to hear this other kid, who adores Lucas, asking him what he wanted to do.  I was elated!

Since then, Lucas has had one more very successful play date – this one over the winter break with one of the girls in his class who loves him most.  She also came in asking Lucas what he wanted to do.  When he paused, she told him that with her other friends they like to make cards for each other.  So we got out construction paper and she cut out a heart and wrote something sweet to Lucas.  I helped him as he drew her a dinosaur and wrote “I like you.”  Burke helped them play a board game, and then we left them on their own to argue over which apps they’d play on the iPad.  Even that — Lucas arguing and negotiating with a friend — was so new and exciting!

And there’s even more evidence that his classmates like Lucas.  He’s gotten invited to birthday parties, and the parents tell us it was their kids idea to invite Lucas.  This week in PE class the kids have been roller skating, and Lucas has been whizzing around the room with them on his built-in wheels.  Apparently today half the kids in the class wanted to hold onto Lucas and his chair while they wheeled around the gym (with his nurse in roller skates pushing!)  It was was such chaos of kindergartners and wheels and everyone tumbling over everyone else to be near Lucas (and the stability of his wheelchair) that they had to make a rule that only two kids at a time could skate with Lucas.

I never could have imagined way back in September that they would have to make rules limiting the number of kids hanging onto Lucas at one time.  And although I knew I was nervous about him making friends, or even being accepted, the relief I feel seeing friendships form is so huge I can almost feel the worry melting out of me.

Some of this is hard to write about because we know that lots of kids aren’t as lucky, that for many reasons – including ongoing, deep prejudice against people with disabilities – they don’t make friends.  And the superstitious part of me wants to knock hard on wood.  Just because his kindergarten peers are sweet, nothing is guaranteed for next year.  Or middle school.  So even given these small but major victories, we’re of course still going to work with Lucas to help him develop social skills for down the road.  But for today we are celebrating these awesome Orca kindergartners who have taken Lucas in as one of their own.

(We joined Lucas and his kindergarten crew for the annual Orca MLK march this morning and here are some pictures.  We got some cute shots with his friends but figured we shouldn’t share without parents’ permission.  But you get the idea… His sign says “Be Nice to All People.”)

After his last trip to the hospital for an x-ray we let Lucas rest for eight days, not moving him anywhere except from bed to couch to bed.  And the down time seems to have paid off!  Last Friday we finally got him back up in his chair and went in to get another x-ray. The doctor was very pleased with the progress — he even showed Lucas the images, and the healing was visible and obvious. Just as significantly for us, Lucas showed no signs of pain the whole time which was a huge contrast to the previous trip to the hospital. So the doctor gave the go-ahead for a return to kindergarten, at least for partial days.

Over the weekend we took a couple short practice trips out of the house. Getting Lucas in and out of his chair is a two-person job now, and he has to slouch down a little to accommodate the big angle of the splint on his hip. But he doesn’t seem to mind (and we were thrilled to be out with him on these beautiful end-of-summer days!), so we went to the library on Saturday and the park on Sunday. We also dragged Lucas along to look at a home for sale in our neighborhood, and he approved because there were birds on the wall. We didn’t explain that the pictures don’t come with the house.

This morning he made his big return to kindergarten. The most heart-warming part was seeing how Lucas’s presence has grown in his absence.  On the first day of school none of the kids really talked to Lucas.  Today we got to school a little early and stood in the hallway waiting for classmates to come in to the building in the morning. When the doors opened, kids flooded in, saw Lucas, and started shouting “Mr. McCullough, Lucas is back!!” Lucas was pretty quiet and maybe a little overwhelmed, but it was amazing to see kids welcome him back into their class!

So much time on the couch that Lucas has taken up reading the NYT, at least when there’s an article about dinosaurs.

Yesterday was Lucas’s last day of preschool, and it was the culmination of a pretty spectacular school term.  This spring Lucas has made big strides in his own unique way.  He’s been able to read big words and count and sort shapes and colors forever.  But over the past couple months he’s gained physical stamina so that he can participate more fully in the full school day, shouting out answers in circle time and singing along with his classmates with more volume.   Of course we don’t get to see all that, but we have our eyes (his nurses) who report back to us each day about his remarkable energy at school, even on the days he hasn’t slept much.  And what we get to see is a kid bubbling with excitement as he gets off the school bus.  He’s sometimes so excited to tell us about his day that he’s trying tell us three things at once all as the lift is still lowering him down off the bus.

And after a year of rough starts and set-backs with his power-chair driving (he works on learning to drive 2-3 times a week at school with his physical therapist, Joan), these past few months he has been making major progress.  Krista was able to go a few times to watch, and Lucas showed off the skills he’s been mastering – driving through doorways, following directions, and most importantly stopping.  Of course it’s still at a tortoise pace, and he still enjoys crashing his “tank” into the wall a little too much,  but other than that he’s mastered driving.  He even knows his right and left and will navigate based on directions.  Lucas beamed with pride when Krista told him that he did his best driving ever.  Of course he still hasn’t sorted out his pronouns, so he replied with an enthusiastic “you did your best driving EVER!,” talking about himself.

A few weeks ago we got the news that Lucas did get a spot at Orca, the public K-8 school near our home that we picked out as our top choice for Lucas.  We’re really excited to have Lucas going to a school in the neighborhood, and we’re excited about the staff we’ve met so far.  It feels like the right decision, but it made graduation day from Lowell extra sad.  The staff at Lowell, where Lucas could have stayed for elementary school, loves Lucas so much.  He spends almost as much time with his therapy team – Joan, Kim, Terri, and Elspeth – as he does with his teacher, and all them have gotten to know and appreciate Lucas so much, and they have gone out of their way to help him.

Lucas, never one for nostalgia or transition anxiety, happily told everyone that he was graduating from preschool, that he would be a kindergartner next year, and that he’d be going to Orca.  No big deal.

The graduation ceremony was beautiful in the way any group of 3-5 year olds trying to act in a coordinated way is amazing.  A teacher played pomp and circumstance on the cello as the kids walked, waddled, and wheeled in to the cafeteria.  They sat on the stage and sang three songs, and a few of them couldn’t help but get up and spin around, or do a couple belly flops, or cry.  Lucas apparently belted the songs out in the rehearsal, but with a cafeteria full of parents and grandparents watching through their smart phones, Lucas got stage fright and barely mumbled his way through the songs.   And when his teacher presented him with his certificate, he cried.

Every day before Lucas leaves the house for school he picks an animal to take, and he clutches it most of the day.  Yesterday was no exception, so he was holding his zebra. After a hug did little to console him, his nurse showed him how his zebra was nibbling on his ear, and things got better.  And then Lucas got a present (“you want to open it!!!”) from his physical therapists, and he was thrilled to see it was a Dr. Seuss book.  And pretty soon he was back to making jokes.  One of his favorites lately is to turn anything into a dinosaur name (“librarianasaurus,” or “silly-a-saurus.”)  So yesterday he beamed as he called himself the “Graduasaurus”.

We’ve had a ton going on recently.  Among other excitement, Lucas had a visit from Grandma Susan, we went to a Pete Seeger all-ages sing-along, we’ve toured kindergartens, and we had a long weekend visit from our Oakland friends Daniella, Gabe, and Rafi.

Did I say kindergarten??!!  Yes, Lucas turns five this summer, meaning this fall we’ll be parents to a kindergartner.  Seattle schools does school placement in March, so we spent a good part of February figuring out how to navigate this transition.

This transition has been somewhat overwhelming both in terms of time and the emotions that seeing many potential future elementary schools for Lucas.  I ended up touring five public elementary schools – the one Lucas currently attends and four others that are closer to our home.

Meanwhile, we met with Lucas’s teachers, school-based therapists, vice principals of other schools, other parents, and special ed administrators at the district office.  And then hours of reading online, going through the district’s resources and highly trafficked parent listservs, trying to decipher the Seattle School’s special ed language and categories.

All of this to answer three basic and related questions:

A)   What school do we think will best serve Lucas?

B)   What school will the school district place him in?  And as a corollary, what schools won’t the district allow him in?

C)   What is our process for getting Lucas placed in the school we determine is best for him if it’s different than the district’s choice?

It stresses me (Krista) out just writing these down.  Because ultimately we can’t know which school will be best until we try.  But through our visits, it seems like there is a school closer to our home, where Lucas could have a number of things important to us: a welcoming school culture, a general education (ie “mainstream”) classroom placement, and school staff experienced with supporting children accessing education who have physical disabilities.  (As you can imagine, much of special ed is focused on emotional and behavioral issues, autism spectrum, etc.  This is all important, but we need people who can look at Lucas’s wheel chair, desk, classroom set up, paper, and pencil and come up with creative ways for him to do school work along with the rest of his peers.)

The school tours were emotional in part because I was on them with a bunch of parents of typically developing kids, many from over-achieving families.  They wanted to know reasonable things: about the playground and recess times, the computer labs, the fresh vegetable options for lunch, test scores, and whether or not there was a music teacher, art teacher, gym class, etc.  Some of these are things that are important to me, and of course it makes me sad to hear that schools are deciding between having a librarian or a music teacher.  But on the tours, as I watched kids in art class sewing a Harriet Tubman-inspired quilt, saw kids run around a wood-chip covered playground, listened in on a science class planning to clean up the drains around school to protect the salmon, and even smelling cafeteria food (which smells eerily the same as it did 30 years ago!) all made me sad.  I felt all sorts of nostalgia for elementary school – which I loved – and was reminded that Lucas might not experience many of the things that made school fun for me.  I hold out hope that he’ll find his own way to friendship and learning and adventure, of course, but for some weird reason the smell of corn dogs and over-cooked peas made me sad that there are parts of the school experience he won’t have.

Or maybe he will.  It depends mostly on finding staff who are interested and willing to be constantly creative so that Lucas CAN take part in the social element of lunch, even if his comes in through a tube.  It’ll take amazing art or science teachers to figure out how Lucas can help clean out a storm drain or make a quilt even if he can’t get down on hands and knees or sew a stitch.  And this is the hard, stressful, knot-in-my-throat-fearful part for me.  There’s no way to know if we’ve found that school with that staff until we pick a school and give it a try.

There’s a much less interesting, though equally long, story about how we’ve gone about answering questions B and C from the list above.  Fortunately we have the time to research and call and advocate, and it looks like we found someone at the district special ed office who is looking out for Lucas in this transition, and who agrees with us on the best placement for him.  We should get official word of Lucas’s placement in a month – keep your fingers crossed for us.

My favorite part of this whole adventure was taking Lucas with me to one of the schools.  In fact, only one administrator who led an evening tour invited me to come back with Lucas to sit in on a kindergarten class.  So the next morning Lucas and his nurse and I popped in on a kindergarten class.  They were in the middle of show-and-tell, but when we walked in every head turned, and what had been a quiet, orderly classroom turned into small chaos.  “What’s that?” “What’s that?” the braver kids shouted out and pointed at tubes, chair, ventilator.  The teacher did a great job of starting with asking Lucas’s name, giving me a minute to give the kids the words “wheel chair” and “vent,” and then they went back to show and tell.  The teacher asked Lucas what he had, and fortunately Lucas is always ready for show and tell.  He was carrying his T-Rex, and it turned out that about 15 of the kids were big T-Rex fans.  Other kids shared, and Lucas had trouble being quiet as he asked me (loudly) what everyone was doing.  When I explained that one kid – and then a few more – were sharing books they had made, Lucas got really excited.  “They made books!” he chanted, even after we left school.  The last kid who shared told that his favorite animals were the whale shark, the tiger shark, and the Tyranasaurus Rex, which I took to be a small shout-out to Lucas.  This, I hope, is the classroom he’ll be in next year.

Did we mention our latest trip to the aquarium?

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):

Today was a big day — Lucas’s last day of preschool, complete with a graduation ceremony, even for the kids like Lucas who are young enough to repeat preschool again next year.  When getting this far is so challenging, you get extra parties!

Lucas was pretty cool about the whole thing, telling people that it was his last day of school, but likely not fully comprehending what that means.  He loves school — sometimes asks to go on the weekends — and he’ll probably miss the amazing team of people who have loved and supported and taught and stretched him this year.  As we prepared thank-you cards and goodbyes for many people at Lowell school, it was clear just what a large and loving team he has, including his two nurses (you’ll see Marquitta, who works on Tuesdays and Thursdays, in the pictures), his three teachers, physical therapist, occupational therapist, speech therapist, and two wonderful bus drivers. His afternoon bus driver Anitra even came by at the end of the ceremony to bring him a “congratulations!” balloon.

Today also marks the four year anniversary of what we called our “shotgun commitment ceremony celebration” back in 2009.  We spent the day surrounded by family and amazing community of friends.  A highlight of the party was a surprise theater piece enacting the “political history of the shotgun wedding,” which was mostly an excuse for our friends to be hilarious, for Krista’s sister to dress up as a pregnant bride (Krista was five months pregnant herself at the time), and to celebrate our values.  Although our community at the time didn’t include many people who identified as disabled, it is pretty clear from the pictures of that skit that Lucas was about to be born into an incredibly welcoming family and community.  We send so much love out to all of you who were there four years ago.  And thanks and equal amounts of love to all of you who have joined our lives since Lucas was born… just two short months after this photo was taken.

In the photo are Sha Grogan-Brown, Mary Grogan, Mackenzie Baris, James Ploeser, the two of us, Carlos Jimenez, Becky Wasserman, maybe Alan Bushnell holding the self-determination sign, and Janelle Treibitz (the brilliance behind the skit, hidden behind us.)

It’s hard to believe we used to update this blog daily.  We miss the more constant blog contact with so many people, but it also feels nice to have so many other things going on in our lives that we don’t rush to write down every one of Lucas’s latest trials, cutenesses, or successes.  (Top cuteness of late: When he heard our  friend Yori play the bagpipes, he loved it.   And he asked “what kind of animal is that?”)

Lucas has been doing really well lately, and we’ve managed to continue to keep his life full of adventures big and small.  Over Memorial Day weekend we went up to Burke’s parents’ house on Whidbey Island and got to spend a couple beautiful afternoons on the beach.  Lucas threw rocks in the water and even put his toes in the frigid Puget Sound.  On Saturday his cousins came, and he flew a kite with Tya and Ellody while Krista and Madden took a horseback riding lesson together.  (See pic below of Krista relishing the incredibly nostalgic ride.  Krista grew up with horses.)

Lucas has had an ongoing slight cold, enough that he had to stay home from school for a couple days in late May.  Both days he seemed healthy when he woke up (every morning Lucas gets all his vitals measured by his nurses at the start of his shift), but when we put him up in his chair to get ready to get on the school bus, suddenly his eyes went dull and he looked like he was ready for a nap at 8:30 am.  The fact that he missed a couple days of school mostly highlighted for us just how healthy he has been — it is common for all children in preschool to get sick, and kids with trachs and vents (direct paths for germs into the lungs) tend to get more severe respiratory illness.  So once again, we’ve felt lucky about how healthy Lucas has been.

And finally, Lucas is going to wrap up his school year next week!  It’s hard not to use cliches to write about how fast this year has flown by.  Maybe even more amazingly, Lucas has his last-day-of-school celebration on June 13, on the four-year-anniversary of our celebration – with many of you – of our relationship, commitment, and coming baby!  That beautiful day on the farm in Virginia feels like another lifetime ago.  Or maybe just a few days ago.

Despite having this blog and his own iPad, Lucas is a bit old fashioned when it comes to communication.  It turns out he loves getting snail mail.  (It started with a card from his wonderful physical therapist at school, then another from a speech therapist.)  So if you want to congratulate him on his first year of school, send him a card to 2943 36th Ave S, Seattle, WA 98144.

Here are some pictures from Memorial Day weekend:

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!