We do our own thing. He plays in the back yard. I scan endless papers into the computer hoping that I will eventually not feel overwhelmed by the number of trees lying about my house in 8 1/2 by 11 inch slivers.
We meet every ten minutes or so, fifteen if I can hear his happy sounds through the open door, and five if I can't hear him at all. It's a good arrangement. I wipe his nose, spray sunblock and offer to put on a show if he wants to lie on the couch. He lets me clean his face, and takes my hand when I invite him in for lunch.
He loves shumai, little dumplings. And after a little searching I have found him petite, one bite shrimp shumai at the intimidating, but cool, "all of Asia and other Ocean-y places and don't forget the half shelf of Mexico" store. I add chopped up pineapple, a banana, and lunch is served.
We alternate between me feeding him bites and him taking the loaded-fork to do it himself. He asked for more watered-down limeade by rolling his cup to me. I asked him if he liked the shumai.
He made a lot of higher-pitched "Ye-aa-AHH" sounds, and clapped his hands together and turned towards me and smiled.
"I'll take that as a "Yes?"
and so I know he likes them. Awesome. My kid has the mad eating skilz. And then I sat there next to him, and it flashed over me, as if I had never thought of it:
my son doesn't really talk.
Whoa. How is that even possible? I mean, how did my kid develop, and grow up to be this almost thirteen year-old who doesn't talk? It was, for a moment, the strangest thing I had ever heard of.
It must be similar to the feeling that other people, those who do not have contact with people like my son, react when I tell them not to expect him to communicate in words. It must be an odd concept to grasp if you do talk, and your whole family talks, and everyone in your family for generations back has used spoken language, and your circle of friends, well, they all speak too. Not speaking must seem like a really big, daunting, overwhelming, horrible thing.
I felt for the first time how foreign that might seem to people who don't live with a person who communicates differently.
and I didn't feel sad for Jack. or for myself.
I actually felt a little sad for all of those people who don't know my kid. Not only because he is a cool kid, because he is, but because communicating with Jack is, on a regular basis, so much more meaningful than communicating with an average person.
When he expresses what he needs, and I understand him, it is one of the best feelings I have, one of the best feelings I will ever have, until the next time it happens. The sense of accomplishment and relief I feel when I have understood his desires, when I have actually heard what he is 'saying', when I have met him where he is, instead of expecting him to come all the way to me... I feel amazing and successful, and he, most importantly, HE is so damn happy that I got it right.
Parenting win! Happy child!
Because that's what we all want, to be heard, to be understood. We want to have someone interact with us where we are, as we are.
And I'm not saying that it is not challenging, for me, or his dad, or his sister, or his grandparents, or for any of the people who try to educate him in classrooms, because it is. It is frustrating to want to know what he thinks: Does he want to go to the street fair or stay home? Does he know the names of the planets? Does he want to watch a movie or play in the backyard? What does he dream about? Does he really enjoy road trips? Does it bother him when I run the dishwasher after he goes to bed? Are his shoes comfortable? And to be honest, it's not always easy to consider an entire other being's paradigm, when I am not always sure of my own needs.
I imagine however, that it is much more frustrating to have all of the answers to those questions and more, and not be able to tell someone. To know exactly, precisely, what you want, and be unable to convey your opinion, on how much salt to put on the eggs, or where you would like to spend spring break.
Or to have all the questions-- what if he has all the questions: Why can't you take pictures of stars? What's the deal with Stonehenge? Who invented pizza? Will time travel ever be possible? What if you had all of the questions, and couldn't ask a single one of them?
And I'm just guessing, but it must be frustrating to be this close to conveying what you want to have happen next, but the person with whom you are interacting gave up listening too soon, didn't wait for your answer, or worse, assumed you didn't have a clue as to what was happening at all.
I worry that he is bored, and that is a terrible thought. I find myself really trying to tease out what is disability, from what is his disinterest.
This conundrum seems more real to me lately as Jack gets older; he is an age that I can distinctly remember. And I'm finding I spend a lot of time unraveling the emotional mess of wondering what are my hopes or my delusions and what are realistic expectations, and that is all tied up with the respectful presumption that my son understands the world around him.
But when it comes down to it, I believe he has a lot to say.
I don't get it right every time, probably most times. I guess wrong, I forget to ask, I don't explain something that's happening, even though I know it could probably be a teaching moment.
But I try. He lets me know when I am on the right track.
My communication with my son is harder for me than the ease I have with other people. It takes more discipline for me to wait for his answer when I am used to buzzing around. I can't multi-task and still get the gist. It makes me think more. Yes, it makes me tired, sometimes exasperated, but I think it is making me more thoughtful in those other conversations with the rest of the world, and engaging with him is worth it every time.
I'm smiling too, because really, how often do any of us get that kind of recognition for anything we do?