Recently, I visited my son at school during snack time, to observe him with his feeding and occupational therapists. I said “Hi,” to Evan to let him know I was there, then sat across the picnic table from him and watched as he slowly unzipped his lunchbox — first one corner, then the next and the next — and lifted the lid to remove his cup, then his bowl and spoon, and, finally, two containers of baby food. “Banana orange medley or Dutch apple dessert?” his occupational therapist asked, since Evan cannot read the label or make a choice by sight. “Dutch apple dessert,” he elected by purposefully pressing the switch that expressed that desire. “So you want Dutch apple dessert?” the therapist said, asking him to confirm the choice. “Yes,” Evan said, pressing the “yes” button on his wrist talker.
The feeding therapist and I looked at one another, shaking our heads in awe. “Wow,” we said together. “Look at what he can do.” This is the boy who came home from the hospital at six months with a feeding tube, who didn’t put a spoon to his mouth until he was four years old. Who never in my experience has even been observed to touch a zipper. And yet here he was, showing off all kinds of self-help skills, taking out his lunch like a champ. As if to press home the reminder of how far my son has come, I saw the following note that same afternoon from my son’s aide: “Evan has worked very hard throughout the day. So, praise him a lot….”
We expect a lot of our children, whether they are neuro-typical or otherwise. Especially with school-age children, it’s easy to focus on all the improvements we hope to see in a day, a week or a year. Better penmanship, improved focus and concentration. The ability to do an hour’s worth of homework without a half hour’s worth of complaint. It’s easy to forget what our children do — and so well — compared to what they may not have done even the day before: make the bed without a reminder, clear their place at the dinner table, give their sibling a hug.
Even more than most typical children, a child with special needs lives every day with the burden of expectations. Their school day is written up as a series of goals and objectives (that infamous Individualized Education Plan, or IEP). A simple example: circle time. At first, Evan’s goal during circle time was to sit in a chair for fifteen minutes without slipping off and lying on the rug. Then came, “Stand up, walk to the board and place his name next to the other children.” After that, “press a switch to say, ‘I’m fine,’ or ‘I’m not fine.'” But even as he did those things, one by one, never in the goals did anyone add, “Enjoy himself! Smile! Laugh and sing!”
With or without the goals and expectations of an IEP or a school day full of therapists and interventions, we often view our kids with special needs for what they lack, rather than what they have. My son is non-verbal and blind. He used to be non-ambulatory. This “language of lack” — sight, words, mobility — promotes and reinforces the “language of problem,” as if our kids were somehow broken, bundles of mistakes to fix. For the child with autism who has a difficult time making eye contact, we forget to praise the fleeting glimpse in our direction; instead, we ask, “Why won’t he look at me?” For my son, I try to remember the days, not so long ago, before he could unzip his lunch box, take a bite of food, wipe his mouth with the edge of a spoon.
As parents, this language of lack propels us not towards that all-important admonition to “praise him well,” but instead, towards the next goal and expectation. Even as I sat and watched my blind son remove every last item from his lunch box and then proceed to feed himself, I plotted with those same therapists about the next step. “It’s time for him to learn how to bite and chew,” I said. “What’s the plan?” While I may have given a brief and tidy, “Way to go Evan!” in that same moment, in the back of my mind I had already added to his list.
In the early twentieth century, the Russian psychologist, Lev Vygotsky, theorized for children and their development a model he called “zones of proximal development.” For Vygotsky, these zones were the best means of teaching a child, and especially a child with developmental disabilities; in the Vygotsky model, therapists and teachers tune into the arena in which the child displays mastery, then increase the “zone of proximal development” bit by bit in order to promote progress.
My father is a child psychiatrist specializing in children with developmental delays. It was he who first told me about Vygotsky, and explained how his theories could apply to a child like Evan. “You make sure the expectations are within reach,” he said, “or inside their zone of proximal development, and you give them lots of modeling and, most important, support, so they can reach those goals.” A few months ago, my father observed my son in his classroom, as Evan and his speech therapist took turns on the drum. “My turn,” the therapist said, cuing Evan. “Now it’s your turn.” Evan pressed the switch that said “my turn,” and pounded away at the drum, laughing to beat the band.
“There you go,” my dad said to me. “Vygotsky in action.”
A friend once told me that I was the master of accepting Evan for who he is, and trying not to expect more. I demurred then as I demur now, knowing as I do how much time I contemplate his next steps, at the expense of recalling just how far he’s come. I do know that my son loves praise, that it makes him smile and sing like nothing else. And so as I remember Vygotsky and think of all Evan’s goals and expectations, I will try to take his aide’s admonition to heart. Tonight, when I kiss Evan and put him to bed, I will remember to praise my son, and praise him well.