Lucas Camilo

After some recent meandering posts that focused more on us (moving to the west coast, causes to donate to, daddy reflections, etc) we’re ready to get back to our bread and butter:  Lucas!

The short-lived fever and cold a couple weeks ago did nothing to slow Lucas’s increasing ability to wow us with his communication skills.  His sign vocabulary continues to grow – he can now sign at least half a dozen animals (duck, cow, and butterfly being his current favorites).  He’s learned “car,” “bicycle,” and “go” all in the last week.  He can point at his mouth or trach to tell us he wants either one suctioned, often alerting us to a growing clog in his airway before we or his monitors sense any change.  He can say “yes”, “no”, “more” and “all done,” and he’s even modified his sign for “more” to a tiny, energy-conserving but very deliberate movement of his thumb and forefinger.   He can say Mommy and Daddy, though he asks for us far less often than he requests his two FAVORITE things: swinging (we use the sign for play, which is kinda like “hang loose”) and reading books.  He sometimes confuses himself trying to figure out which one he likes more.  The other day we used a bungy chord to hook his swing to a tree in the front yard which led to lots of smiles and frantic “hang loose” signs every time we tried to stop.

We’re sure that the ability to suddenly communicate with your toddler, using words instead of guesswork or telepathy, is an amazing experience for any parent.  But the fact that Lucas has such specific, immediate needs that go beyond food, warmth, and love makes it all the sweeter to be able to ask him what he wants and needs.  In particular, we’re now able to ask Lucas “do you want a mouth suction” before we flip on the machine.  Sometimes we can see the drool pooling up, and Lucas – who used to love a good mouth suction – will sign “no.”  Sometimes we respect his desires but other times, if it looks like he’s having trouble breathing or at risk of aspirating, we override his “no.”  But it’s still a conversation, which feels amazing.

We used to call Lucas the most easy-going kid on the planet, never complaining about anything.  But with his increasing ability to communicate, Lucas is showing us that he actually has strong preferences and that he’s no pushover.   We know this because for the past two weeks he’s been signing “book” over and over and over again, good-naturedly but repeatedly until someone brings him a book.  Then, he often takes one look at the book we’ve chosen and signs “no.”  And then “book” again, meaning we should draw again from the pile.  Lucas’s two favorite books right now are “One Fish Two Fish” and “Baby Clifford’s Animal Friends,” though most Dr. Seuess books will do the trick at this point.  Still, Lucas often nixes 5 or 10 books in a row before we come to the one he wants.  And then he “reads” it, signing “fish” or “hat” or “car” when he gets to the pages with those pictures.

On top of signing, Lucas is beginning to use his voice to communicate.  His vocalized expression-of-choice is still “na-na-na-na,” but he can also say “ma-ma,” “yeah,” “nah,” and even on occasion “da-da.”  He’ll sometimes even sing different variations on these sounds for an hour at a time, experimenting with pitch and volume and tone of voice.  However, every time his speech therapist comes over (with the occupational therapist) he goes completely silent, so they’ve been skeptical when we say he really can talk.  But then yesterday Lucas finally let loose and showed off his verbal abilities throughout his hour-long session.  Mostly it was his ability to catch onto things they were saying that stunned them so much that they started speculating that Lucas may be a small genius.  We’re pretty sure of it.

Of course none of this is easy for Lucas.  If he’s lying in bed he can reach up to his face to sign Daddy (thumb on forehead) or hat (hand pats top of head), but he can barely reach his chin when he’s sitting up and his arms are lying on his tray.  Indeed, his limited range of motion will certainly make the variety of sign-movements more difficult for him as he adds vocabulary.  But already he’s showing such great adaptability and willingness to improvise with communication that we’re sure he’ll be making long speeches about war and peace, disability justice, and tax policy (among other things) soon enough.

here’s a video of Lucas practicing signs (parental advisory: explicit content)