January 21, 2014
“Mom, what does disabled mean?” my six-year-old son asks me as he whips around the corner, stopping dead in his tracks just inches from me. “Where did you see that word?” I ask, because it isn’t one we’ve used much around here when we discuss autism. I am determined that Zach view both his autism and himself positively, and I find that difficult to do if employing a word that starts with a negative.
“On the tv!” he smiles and points, and I look at our newly hooked-up play station three and realize I’m going to have to get daddy to help fix it. I acknowledge I’ve been holding my breath, and I quickly draw in air, relaxing as I realize his query is completely technology-related. I pry my husband out of the garage where he’s puttering and go back to my mound of dishes, thinking about why that word summoned such a strong reaction in me.
And I realize, that despite my youngest son having autism spectrum disorder, I don’t view him as being disabled.
That may seem like a bold statement to make, and I’m certain some of you may disagree. There have most certainly been exhausting challenges along the way since the terrible weeks when Zach regressed five years ago, with bouts of diarrhea and wordlessness seemingly scooping up our child and leaving a stranger in their wake. Trust me, it took some time for his words to come back. It took longer for his ebullient soul to return to us, but to our joy, return it did.
During those initial years after his diagnosis there were hours and hours of therapy, play, and just plain interaction with him. There was self-contained pre-school, partially mainstreamed kindergarten, and now first grade in an inclusion classroom. Zachary has friends, loves learning, is able to participate in almost every activity he wants to join. He is, and I write this with great gratitude, quite independent, happy, productive, and safe. He still has trouble with impulsivity. He is still autistic.
But I no longer view his life as limited as I once did during those dark days when seemingly nothing could make him smile.
After having taught several hundred children during my career as an educator, I’ve come to believe we all have our challenges, whether they be an atypical neurology or simply events that have occurred in our lives. At times Zach still has to be reminded to temper his enthusiasm (occasionally, a few of his classmates would like to answer the teacher’s questions too.) He has strong emotional reactions to situations many children would brush off without a thought. There is still progress to be made.
My youngest requires a great deal of attention. But then, what six-year-old doesn’t.
Eventually the word “disabled” will return to us again, and not in relation to a gaming system beyond my capacities to understand. We will once again discuss the merits of autism, and the differences between its manifestation in him and in his older brother, who is severely affected. My son and I will talk about what it means to have a life-long disorder but remain able, able to love, be productive, and live independently, which have always been my dreams for my boys. We will talk. And again, his ability to communicate his wants, needs and dreams is something I never take for granted either.
I want Zach to stretch himself, to shatter barriers, to never self-impose limits. I believe that for this child, these things will happen.
And I can’t wait to see his life unfold.