Lucas Camilo

It’s been a great summer for Lucas — not just because of the fun camps, outings, and trips we’ve done together as a family, but also because he’s continued to do really well in terms of his development. We keep hearing from friends and family how much more communicative Lucas is, how they can understand him better and actually have a real conversation sometimes. It’s very gratifying because for so long we knew that a brilliant, funny kid was in there but didn’t often get to see him share his best side with the world.  Now, there are times when we can’t shut him up!  Lately he often yells (or rather uses his loud voice) to say hi to joggers or other passerbys, insisting that they stop so that he can ask them their name.  We’ve even taken to calling him a “social dimorphodon” (which he prefers over “social butterfly.”) We spent 5 days last week at Whidbey Island with family and it was so fun to see Lucas interact in new ways with his grandparents, aunts and uncle, cousins, and of course his little sister Ida.

One of the really exciting things is that Lucas has begun to master the augmentative communication device known as the Dynavox.  We actually first got the Dynavox back in 2011 but realized quickly that it was never going to serve as a form of direct communication for Lucas.  For a while he still preferred sign language, and then as he continued to improve his verbal communication there was no need to switch to a tedious, cumbersome speech device — even if most people have a hard time understanding at least some of what Lucas says.

But in the second half of his kindergarten year, the occupational and speech therapists at school figured out a system for Lucas to be able to type out full words and sentences using the Dynavox.  Taking advantage of the fact that he is such a good speller, they realized that typing would be better than selecting from a menu of pictures and characters.  The challenge was to figure out a way for Lucas’s weak arms to get in a position to type while still being able to see the screen that the words were appearing on.  And the solution was to mount the Dynavox in front of his head while using a trackpad connected via bluetooth to an on-screen keyboard.  It took a while for him to get the hang of it, but with lots of summer practice he’s started to master the system.  Oh, and his newfound passion for composing dinosaur poetry certainly helps as well.  Check out the video compilation of some of his poems:

The other exciting development is that Lucas has his own power wheelchair!  Its been many years in the making — in fact, it was June of 2012 when Lucas first took a spin in a loaned powerchair.  It took a lot of training and the right vendor to find a position that he’s comfortable in and a wheelchair that works for Lucas.  We’re very grateful to all the people that have helped him learn to drive and configure out the right set up.  Most recently, it took a lot of back and forth with insurance and the vendor before we finally got the call a few weeks ago that his ride was ready to roll.

We drove out to Gig Harbor last Monday to fit Lucas in the chair, and after a couple hours of adjustments it was ready to come home with us.  The new chair has lots of bells and whistles, some of which are specifically customized for Lucas.  It has two features that the loaner chairs he employed previously didn’t have.  First, it can fully recline so that he can rest, get a diaper change, etc without being lifted out of the chair; and second, it elevates vertically so that he can almost get high enough to look us in the eye (see video below).  Today we took it for a test run at the community center down the street and then Lucas actually drove all the way home (3 blocks) by himself.  It took a while, in part because it’s been three months since he last drove and he’s still getting used to the new system. Certainly he still has some work to do before he can consistently use the powerchair, but its still quite an accomplishment.

I can’t help but be awed by technology sometimes, amazed at what can be created in our modern era to benefit a person like Lucas who has a severe physical disability.  But even more, I’m awed by my son.  It would have been easy for Lucas to give up after various failed attempts at using augmentative communication or power mobility.  But he stuck with it, and he has been patient yet persistent in getting to a place where he can use this technology to learn, explore the world, and best of all, have fun. The joy and humor he brings to all of this is infectious. I can’t wait to see what comes next…