Sunday, November 16, 2008

The Black Box

When airplanes crash, inevitably there is talk of retrieving "the black box," that all-knowing cache of information that provides critical information needed for understanding why and how the crash occurred.

I often refer to many of the 4 years, 9 months and 27 days since we received Boo's autism diagnosis as "the black hole years." While things have gotten easier in many, many aspects there are times when we still feel like we are right back at Day One. More often than not, we're pleasantly surprised at the outcome of whatever it was that triggered those black-hole emotions. Other times ... well, we might as well have never left the developmental pediatrician's office. And many times, we don't know what type of outcome to expect.

Yesterday was one of those days.

The theater where Boo takes acting lessons is known as "The Black Box." And indeed, that's exactly what it is. It's small, probably accommodating only 150 people at a time. It's dark. Everything - the stage, the floor, the seats, the walls - is all black. You take your seat not really knowing what to expect and how this show is going to play out on what seems like a very small stage.

The Dean and I sat in the front row of The Black Box yesterday for Opening Afternoon of Boo's theatrical debut. No doubt we were more nervous than Boo was. What if he forgot his two lines? What if he had a meltdown prior to the performance and refused to go on? What if his sensory sensitivities became overwhelming and he couldn't do this? All that mattered, we said, was that he had fun - and indeed he did seem to have fun each Saturday of the last two months of acting class. I would think, I said to The Dean, that if the director had any doubts about Boo's ability to do this, we might have heard about them before now.

The curtain went up, and Boo was curled up, Mole #3-like, almost in hibernation, for the opening number. Tapping his feet, bopping to the music, he suddenly popped up, dancing and singing with the chorus. He has two lines, and one of them is delivered with such enthusiasm and passion as the show builds to its finale. At times, he is one of the loudest singers in the songs he is part of.
I watched the production yesterday - twice - and each time, I saw simultaneous scenes. The scene from the developmental pediatrician's office 1,762 days ago when we were told that Boo had "clinical features of autism spectrum disorder." Who couldn't tell us what to expect from this child sitting in the corner, lining up his cars. This same child, banging his head against our couch and gnawing on the hinges of the entertainment unit. The same child whose sensory issues would have prevented him from even stepping into The Black Box, much less performing in one of its productions.

I thought about the nurse practitioner who suggested that, because of his echolalic talents and ability to memorize copious amounts of information, that we consider getting him into acting. About the floortime therapist who we had spent three years worth of Saturdays with, getting him to engage with us and show us what was going on in his imagination. About the speech therapists, the teachers, the OTs, who developed creative and innovative techniques for calming him and getting him through his day - and making ours just a little bit more manageable.

And I thought about my own Black Box, that internal parental GPS containing all the hopes and dreams one has for a child in-utero and in infancy. How it was smashed to smithereens that January day and how, since then, we've painstakingly picked up piece by miniscule piece to try and create a life for Boo where - to use a phrase I wrote constantly when I worked for a residential facility for kids and adults with disabilities - he could reach his full potential.

Boo's Black Box isn't completely assembled yet, but then again, who among us can say that ours is? All I know is that yesterday showed me the power of surprise, the reward of hard work, and how so many people deserve to bask in the spotlight and the sound of applause while taking a bow.


Anonymous said...

Beautiful! What a beautiful post.

Becca said...

Wow, this post left me breathless. I'm so glad you've found a good outlet for your Boo, and I felt a little shiver run down my spine when you wrote about how he was "bopping to the music" and the way he enthusiastically delivered his lines.

And you're so right - who among us can say our particular "Black Box" is completely assembled? We are all works in progress.

Beautiful post.

egghead23 said...


Anonymous said...

Really great post.

Mean Mommy said...

Wow! What amazing parents this wonderful child was given. I'd imagine he's helping to re-write a portion of your own black box. A part that makes you more patient, loving, understanding, empathetic, and strong. You deserve to take a bow yourself- truly.

Niksmom said...

What a beautiful post. Full of love, wonder, surprise, and so honest.

Now that I know we're both "friends of Joe," I'm dying to meet you, too!

vikk simmons said...

You are such a compelling writer. I can't stop reading even when I have an inkling that the emotions will well up and wash over me before I finish reading. That is a gift. Again, it was a pleasure to read your work.

I plan to return.