Brown Butterfly

Image courtesy of the Australian Museum

Brown.  Butterfly.  Brown. Butterfly.

On each of our recent trips to the hospital —I should interject here that nearly all of Nik’s doctors practice in the various affiliated clinics; our trips are not of an emergent nature— Nik has adamantly repeated these two words —sometimes paired together— as we either wait for our appointment to begin or as we are waiting for the valet attendant to bring the car.  (What? They offer free valet parking; I’d be a fool not to use it when I can!)  My poor little guy, has been pressing those little icons on his talker until his fingertips must ache from the effort it takes to try to make himself understood.

Today’s visit was no different.

Brown.  Butterfly.  Brown, brown, brown.  Butterfly. Brown.  Butterfly.

I wracked my brain trying to figure out what he could possibly mean.  Is there a song I sing to him with those words in it? Does he want me to sing it? What song is it?Is he asking me to color? Does he want to go see a butterfly? Oh, Baby, Mama doesn’t understand. Help me understand, okay? His frustration at not being understood was so palpable; my throat ached with unshed tears.

What the hell good does it do to have this fancy speech device if he still can’t tell me what he wants? I felt myself spiraling downward with each digitized utterance.  Brown.  Butterfly.  Brown.  Brown.  Butterfly.  Butterfly. Each word a condemnation of my inability to understand my own child, little razors to my heart.

Knowing he’d been cooped up in the car and so patient during his appointment and the subsequent scheduling of multiple other appointments, I offered Nik a chance to play on the playground before we strapped ourselves in for another hour on the road.  He was excited at the prospect and began to dance what Niksdad and I laughingly refer to as the “excited pony dance.”  Smiling and dancing, we headed for the exit.

SCREEEEEEEEECH! CLOSED?? What do you mean the playground is closed? Turns out it’s been so hot that a child got burned while trying to sit on a swing yesterday so the hospital had to close it until the weather cools off a bit.  Um, yeah.

Hello, autism? Meet thwarted expectations and changed plans.  Let’s just say the next twenty minutes were pretty harrowing and we narrowly avoided a trip to the ER— a short walk through the parking lot.  We made it home in better spirits and had an amazing session with a new-to-us speech therapist (very definitely blog-worthy in a separate post).  The afternoon was smooth sailing.

Fast forward to bed time tonight.  Our evening ritual is very consistent and always involves the use of Nik’s “talker” so he can tell us “Goodnight, please” or something of that nature.  Tonight, as he sat snuggled on his papa’s lap —talker balanced on his slender little legs— I heard one of those damning words again.

Brown, brown, brown.

“You know, honey, he kept saying that at the hospital; I can’t figure out for the life of me what he’s trying to say.” Niksdad looked as baffled as I was.  We both sort of figured it was going to remain an enigma.  Suddenly, a little electronic voice drew back the shroud of mystery:

Play. Brown.  Play. Brown.

“OH. MY.GOD! Of course!!!!! How could I not understand!” My husband looked at me like I had three heads.  “Honey, did you hear that?  Do you get it now?” Niksdad looked at me blankly.  I pressed the talk section of the device (which then repeats the whole phrase that’s been entered).  Nope, still blank.

I sighed and said “Put one finger in your ear and imagine what Nik might hear” and I pressed the buttons again. Play. Brown.  Play. Brown. “It’s playground! He’s been trying to tell me PLAY-GROUND!  Brown must sound like ground to him.”

Nik smiled beatifically as my heart flipped in my chest.  Slightly weepy but exhilarated, we carried our sleepy boy up to bed.  As we came back downstairs to the playroom, it struck me: BUTTERFLY! OF COURSE!

“Honey, do you say a particular phrase to Nik when you go to the park? Like “Do you want to slide?” Niksdad said “Sometimes.  Or I’ll ask if he wants to climb. Why?”

Go ahead, put your finger in one ear and then say the phrase “want to slide” or “want to climb” with a moderately elided pronunciation.  Imagine what it might sound like to a child with, perhaps, moderately impaired hearing.  Do you hear it?

As magical as the beating of a butterfly’s wings.

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