Lucas Camilo

Happy New Year!  We’ve been busy, mostly enjoying the holidays and a bit of a break from time online.  So we may try to recap our last few weeks in a couple posts.  For now, a bit about Christmas.

As Lucas gets older he has more complex thoughts but still very unique ways of expressing himself. We were in the van driving to Beaverton, Oregon for Christmas when we pulled off a rural I-5 exit to give him some food. Things were going relatively smoothly on our drive, but the two of us were also in a bit of a zone – heads down, focused on our somewhat messy layout needed for tube-feeding on the road. Out of nowhere, Lucas declared (referring to himself as ‘you’), “You are so excited to go to Grandma’s house!”

We both laughed because it was so out-of-the-blue, and yet also so contextually appropriate. Lucas generally doesn’t talk about feelings, his or anyone else’s, and he rarely expresses looking forward to something other than by giving instructions that will move us from here-to-there.  (Ie. “you want to get up in your chair” is his way of telling us he wants us to put him in his wheelchair because he wants to be somewhere else.)  Many of you will assure us that the 4 year olds in your life don’t process feelings verbally either. But Lucas seems to be extra limited, confused, or uninterested in this area of communication. He rarely expresses “like,” and he may have never used the words “don’t like” together. If you asked him how he was doing, through most of 2013, his answer was “yeah.” He now says “happy,” but it seems equally rote. Maybe he’s a social genius and realizes most of us are less-than-fully-authentic when we answer “how are you.” But that seems unlikely.

Christmas seemed to unleash new kinds of joy in Lucas, and at various times – sometimes with words, and sometimes just with extra sparkle in his eye – Lucas has expressed his utter delight at the season.  The day we decorated our little Christmas tree he was a bundle of exuberance. For every ornament we pulled out, he’d ask/exclaim, “What’s THAT one!?!?” He’d inspect the ornament and then either direct one of us where to put it, or we’d lift him up and he’d place the ornament himself. For the rest of the month, every time he’d see the tree, he’d tell everyone “you did such a good job on the Christmas tree!” (remember: “you” = “I”).

On the last day of school there was a “holiday” party for all the kids in special ed. All of the 50+ kids, teachers, parents and aids gathered in the cafeteria, shook bells, sang Christmas carols, and got a visit from Santa. Each kid got to go up and sit on (or near) Santa’s lap. Last year Lucas was very nervous about the whole thing and barely tolerated getting near Santa. This year, before Santa was even comfortably seated in his chair, Lucas shouted out from the back of the circle “I love you Santa!”

We’ve both felt winter’s darkness at times this year, so it’s been nice to have Lucas fully in love with the better parts of Christmas: the lights, the candles, and the singing. He somehow doesn’t care much about presents, and he couldn’t even make a list for Santa when we asked him. (We didn’t ask very insistently – just to prove to ourselves that he really didn’t care. He eventually said he’d ask for stickers.) And it helps that our families are flexible. We celebrated pre-Christmas with brunch and a walk with the Stansbury side of the family a few days early, and our time with Krista’s family was restful – mostly focused on reading books with Lucas and taking walks around Grandma’s neighborhood.

When we got back to Seattle, Lucas and Burke returned to their routine of getting Lucas up in his stander in the evenings and spelling words with his magnet letters. Their game includes picking a category – animals, shapes, etc – and then trying to sound out often long, complex words. One night recently Burke got Lucas got up in his stander and Lucas exclaimed, “You want to spell feeling emotions!” So Burke helped him go through all sorts of possible feelings: excited, bored, tired, mad, sad, surprised, and, of course, happy.  Which Lucas certainly was.