September 23, 2013

Chaos and Clarity

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , at 11:02 am by autismmommytherapist

Summer 2013 Part 2 083“Are we there yet?” my smallest son whines as my family trudges through the extensive Great Adventure parking lot, and although his tone is annoying I have to smile, because I can clearly remember peppering my mom with that same query in this very parking lot about a hundred years ago. “Soon honey, soon” I say, and drop Justin’s hand momentarily so that Jeff and I can swing Zach and thereby distract him.

We give him a few whirls, then our tired middle-aged arms give out, and we tell him he has to walk the rest of the way. I reach out for Justin’s hand once more, then realize he is gripping my arm as he moves in front of me, stopping me dead in my tracks. He gifts me his intense gaze, then he tries to talk.

My ten-year-old son attempts to speak an entire sentence.

My heart pounds to the staccato of his syllables, consonants like “b” and “m” punctuating the air around us. I have no idea what he’s saying, me, who can divine what DVD he wants when he hands me a book filled with hundreds, me who can discern what snack he desires at a venue prior to his pointing for it, me whose gut tells her which bedtime story he’ll choose every night before slumber.

He grips my arm tightly, searches my eyes as his lips form the sounds, pronouncing them with an almost feral intensity. I think I hear an “I” and an “l” in there somewhere, and given that I definitively heard an “m” I go out on a limb and respond “Justin, I love you too.” He responds with the faintest of grins, grabs my hand tightly, and resumes his loping gait toward our waiting car.

My husband and I lock eyes. We are momentarily stunned. I struggle to hold back tears.

This isn’t the first time we’ve had spontaneous speech. There has been an elusive “mama” or “more” thrown our way on occasion. But the lion’s share of Justin’s language has been in response to a question put to him regarding a concrete concept, such as a snack desired, or the choice of a destination.

We’ve also had some success with a repertoire of repeated words out of context, a litany of language we require he attempt or give us some approximation thereof, mostly so he doesn’t lose what he’s worked so hard to acquire. The latter is in no way “typical” conversation, but it is the primary way in which we elicit words from him. What just happened in the parking lot is different. It’s spontaneous. It’s purposeful.

It simultaneously renders me elated, and breaks my heart.

It’s the earnestness that gets me, that elusive thread so pervasive in my son which propels me to work so hard for him, to “get” what he wants. In that moment he wanted to convey something sacred to him, and all I can do is hope his momma got it right. I resume our trajectory toward our SUV and glance at my spouse, who says “he really tried that time”, and I nod in response.

The truth is I mostly relinquished my longing for words a while back, replaced it with the desire for any form of communication which would work for my son. We’ve had some success with the iPad and a program called Proloquo2go, but he predominantly employs it at school with his academics, is more reluctant to make the effort at home or in the community. Despite his hit-or-miss usage in the house I’m so grateful he has any means with which to convey his needs. I continue to hope he’ll one day type his wants, and dare I hope, his thoughts, as he matures and progresses in his education.

And yet I know a part of me will never completely give up on my desire to hear his conventional speech. While I’ve locked that dream away, put it on a shelf far out of reach, I remind myself it’s okay to dust it off occasionally and revisit.

Because with autism, you just never know.

My eldest son sights our car and increases his pace, the “e” sound surrounding us in his joy, as he knows both rest and juice await him. I realize that the entire episode lasted less than thirty seconds, that my youngest child is completely oblivious to what transpired. I know that it might happen again. I acknowledge to my fragile heart that it might not.

I remind myself that this child does not require spoken speech to tell me he loves me.

Jeff and I load children and paraphernalia in our waiting chariot, and I have to smile at the yin and yang of it all. This is how things go in our family. There is progress made, and progress lost. There is elation at skills learned, and sadness at such profound struggles. There is chaos, and there is clarity. There is autism.

And at this moment there are two urgent requests for juice boxes, and my husband complies as I put the car in drive and head to our next destination, the journey always challenging, but compelling in its beauty and its breadth.

Advertisements

10 Comments »

  1. wow, this is just lovely!

  2. “The eyes are the window to your soul. – William Shakespeare”

    Justin’s eyes always show his love for you!

  3. Mom said,

    Such precious moments. How beautiful!

  4. My heart fills with hope, grateful tears slide down my face and I continue to be inspired by Justin and by your family’s journey through autism. Thanks for sharing Kimi. ♥

  5. Leslie Burby said,

    Another profound post. Tears are running down my face as I read this because I have yet to hear my son say I love you. I have hope though – just the other day instead of getting frustrated he went and got his flashcards and showed me what he wanted by getting the corresponding flashcard. Thanks for sharing.

    • I won’t tell you he’ll get there, because I always hate when people predict the future for my son, and truly, nobody knows what he will or won’t accomplish. I will wish you peace with whatever happens, and from the little I know you, I am certain you will achieve that. His picking up that flashcard is momentous (there should be a parade!). That’s how it all started with Justin, with PECS a hundred years ago. Now he uses an iPad and all of our lives, and his, are so much better. Wishing all of you continued progress and hope!

  6. chad said,

    Berlee–

    Ying and yang indeed–such a rich read!!!


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: