April 14, 2014

Let’s Talk

Posted in Life's Little Moments, My Take on Autism tagged , , , , at 4:25 pm by autismmommytherapist

Justin Key

It’s almost bedtime for the boys, one of favorite times of the day (for both selfless and selfish reasons,) and Justin and I are enmeshed in one of my, and I hope his, favorite games. My not-so-little-boy is wrapped tightly in his Elmo towel, standing in front of me on his bedroom floor with a huge smile on his face. He pushes my shoulder playfully, and quickly looks up at the various framed photos that grace the top shelf of his bureau.

As is our custom I ask him to point to me, his dad, his brother, and his beloved teacher, the one whom he embraces at least a dozen times a day. He does so with glee, and I follow-up with my staple queries involving these individuals, asking him if he loves them, waiting for my usual reward of his coveted nod in the affirmative.

Tonight however, the answer is a resounding “no.”  If I didn’t know better, I’d wonder how we all fell out of favor so fast. Hell, just last night he loved us.

For me, communicating with Justin has always been a double-edged sword. Back when he was diagnosed at the tender age of seventeen months I clearly recall our pediatrician handing me a set of misprinted articles about autism, all of them pronouncing a dire verdict of what was to come. Every single one of them also included a piece describing severe deficits in language.

I can remember how I desperately tried to solicit sounds from him right after that pronouncement, clinging to the consonants I’d heard prior to his first birthday, striving to hear them once again. The few word approximations Justin had before twelve months of age were long gone by the time he received the autism label, and it literally took a decade before I began to hear their echoes, like lost friends returning to call upon us. Now Justin has about a dozen words on command, and is using “hi” and “bye” appropriately in context.

The words are thrilling to hear, but I admit not what I longed for a decade ago in my frenzied attempts to elicit language from my son.

The truth is however that even without the spoken word Justin and I have always seemed to comprehend one another. When he was younger he first communicated his wants and needs using PECS (the Picture Exchange Communication System). When his therapists felt he’d outgrown that method we moved him onto Proloquo2go, which he uses on his iPad predominantly for his academics at school. These devices helped us in ascertaining what he wants, but with his burgeoning maturity he often is able to meet his own needs without resorting to using technology.

Despite the fact I’d like to see him use his iPad more, that independence is a beautiful thing.

I’m thrilled he’s able to do so much more for himself, independence being an area of his development I focus on heavily, and I’m equally ecstatic with his leaps in communication. I’m grateful, as I try to be with all areas of his progress, no matter how small.

But I admit, for some reason this night especially, I still yearn for more.

He’ll be eleven soon, is solidly entrenched in his fifth grade year, the age group I taught for a dozen. I admit I want more than just the “nod,” the requests for juice, the demands for access to a toy. I long for access to the inner workings of his mind to know if he feels loved, if he truly feels accepted for who he is. I’m greedy to know if he really understands us when he responds to our “yes or no” questions.

I wish I could know his dreams.

I know even as I pen these hopes and desires that all I can do as his mother is keep encouraging him, keep working with him, and wait. I am terrible at it, but there is no other option. Perhaps, and the odds are against me, one day I’ll make progress in this area too.

I shelve my ruminations for another day, and my beloved boy looks me in the eyes and pulls me in for one of his signature kisses.

And for just a moment, it is enough.




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