Wednesday, August 17, 2011


I'm back at work, and a lot of talk has been going on in our staff development sessions about transforming the way we teach. I'll not go into the details, because Lord knows I am up to my eyeballs in back-to-work minutiae, but the word "transformation" has me thinking about Luke and how wonderfully he has been doing over the past month.

To transform is to change into something new - I'm not exactly bringing you an earth-shattering revelation there. : ) In his presentation to our staff, our principal relied on a image we often think of with transformation: a caterpillar that transforms into a butterfly. I learned that the butterfly can only emerge from its cocoon after a long struggle. Literally it wiggles and writhes to expand out of the cocoon, and as it does, its body releases chemicals that promote the growth of its wings. And we all know what incredible things the wings enable that butterfly to do: to fly, to be beautiful, to do and be more than imagined. Of course that butterfly is transformed, but its core is still like the caterpillar it was at first. Even though something new has come forth, the butterfly retains its original identity. But it's also envigorated, strengthened, because it struggled to get there.

This anecdote about butterflies has me thinking about my Luke. To be candid, he's not yet a butterfly who is "all done" and perfected (then again, who among us is?). But over the past few weeks, God has blessed us with some great rays of hope. In short: Luke has been consistent in using some functional language to request what he wants! If you know nothing about autism, you're probably thinking, "Um, well, okay... shouldn't he have done that a long time ago?" And yes - neurotypical kids do this 12-18 months earlier than Luke has. But for a boy who has largely only jibber-jabbered, with a few isolated imitations of random words and phrases, this is the BIGGEST. DEAL. EVER. We are over the moon. He'll point to his juice and say "juice." He'll point to the box of Ritz Bitz and say "crackers." You get the idea. (I'll tell you what: he's had a hell of a lot of cookies and gotten his pacifier and the iPod Touch a lot lately because by golly, if that kid is going to use WORDS, you can bet we're going to reward him for it! =D) At school, he has repeated around 75 words based on pictures he sees often, and we can tell at home that his receptive language and comprehension have vastly improved. He is singing for us a LOT. His favorites are Bruno Mars, Barney, Choo Choo Soul, and Hot Chelle Ray's "Tonight." (Yes, it's a horrible top 40 song, and I think Jeremy would be horrified if he weren't just so dang happy Luke is talking!)

But best of all? He plays with us. He takes turns with us, counts "uh-ONE, uh-TWO, uh-FWEE" while we swing him onto his new bed. He's hugging us and kissing us. (And, in a semi-awkward but nevertheless sweet moment, he hugged and kissed the occupational therapist he met for the very first time two weeks ago. A little weird, but soooo cute.) He'll play peek-a-boo, crack up when we tickle or chase him. While he's not always calling us or those closest to him by name, he's consistently doing so with our pictures (which is common for kids with ASDs - pictures are often easier for them to learn from). Simply stated, he's transforming. He's coming into the world and connecting to it unlike ever before.

And as any parent of a child with autism knows, there's a myriad of emotions that comes with improvement: overwhelming hope, sensation of relief, yet a suppressed, panicky fear - will this go away? Will there be regression? We can only hope and pray there will not. But if I've learned anything from autism, it's this: you just have to take each day, each moment, on its own. Think of - and, inevitably, fear - the future too much and it will swallow you whole. Instead, celebrate the daily victories. Savor the spontaneous hugs and kisses. Let your heart feel warm when you hear your child's voice - finally! - finish the song* you start:  (*Bruno Mars's "Just the Way You Are")

Me: "When I see your face, there's not a thing that I would change, 'cause you're amazing..."


Because no matter what, he is. He always has been. But the thought that there's a chance he can soar despite his struggles? Why there's nothing more amazing than that.


Anne said...

I love hearing about your journey and can only imagine what you guys go through! I know autism is tough but when they 'transform' it can be rewarding. Hope you have a great school year and love hearing about Luke!

Donna said...

And don't forget, Luke made his Grandma's birthday the best ever when he kissed her not once, but two times without coaxing!

Kristina said...

Love this post, Lisa! SO happy to read about Luke's progress and in awe of your amazing perspective. God knew what He was doing when He chose you to be Luke's mommy. You rock! ((HUGS))