Lucas Camilo

It’s been a full week and a half since we last wrote on the blog. Lucas has been out a lot lately, to a local library for a Halloween event, back to Occupy DC (Halloween festivities again) and then last night to a CISPES speaking event at St. Stephen’s. Over the past few weeks there have been many beautiful, crisp, fall days and Lucas has being outside, swinging on his homemade tree swing, sitting in the back yard, talking walks around the neighborhood, or hopping in the car for longer journeys.

Sunday’s “Occupy Halloween” gathering at the McPherson Square encampment was a lot of fun for all of us.  A bunch of families with kids showed up – on a sunny, 50 degree afternoon, the day after DC’s first snow of the year! – and we sat out on tarps decorating mini-pumpkins, reading books, and chatting with friends. Despite the fact that Lucas couldn’t participate in some of the activities, the gathering felt inclusive, and indeed Lucas wasn’t the only kid with special needs: our friends Dan and Jaime came with their daughter Claire who also uses a wheelchair, and one of the organizers of the event has a non-verbal daughter with autism. Lucas especially enjoyed reading books with Nadeem, the son of Rami and Crystal who was excited to hang out with him. Burke had to leave early so Sha accompanied Krista and Lucas back to the house after a couple of hours in the park.

The kids’ party at the Petworth Library last Friday was a little more difficult. As promised, the space was accessible for a child in a wheelchair but getting around wasn’t easy, especially with so many little kids running everywhere. Lucas got all done up in his piggy costume which was pretty cute, and there were other farm animals as well. Still, for whatever reason Lucas just didn’t seem that happy to be there. He got upset and cried a few times, and was generally spaced out most of the time, even as some kids came up and tried to engage with him. It was hard to see, and made harder when the time came to trick-or-treat on the two upper levels of the library. We took the elevator up from the basement – after a long wait – only to find that the rest of the kids had already finished on that floor and moved to the next. That portion of the event was clearly set up for kids who run up and down stairs and ultimately we skipped the next level of trick-or-treating and waited a long time again to finally return in the elevator to the gathering below.

There’s a lot we could speculate about why Lucas didn’t seem to be enjoying the library. The thick, heavy piggy costume made it hard for him to move his arms and sign, and that in turn limited his participation. And the general atmosphere of kids running around everywhere was probably overwhelming. Was Lucas sad not to be more a part of it? It’s hard to say… perhaps he was just tired, but the event made us think about some of the challenges that we’ll continue to face when we bring Lucas to children’s activities set up primarily for typically developing kids.