Years ago a teacher told us that our Down syndrome son couldn’t make three word sentences but we had heard evidence to the contrary every day. I noticed last night that he spoke a sentence of at least 10 words. I don’t remember what it was exactly because it was just part of a normal conversation, though it took a place in my memory for its complexity and length. It settled on me as a reminder of how little other people really know him still.
My son has lots of friends and teachers who have spent a great deal of time with him. I wager none of them have heard him speak a sentence like that. He goes to church with us, and school, and all over town but the impression he makes is very different than what I might describe if asked about his abilities and personality. I do know (our family knows) a side of him that no one else knows, but if that’s true, if he is so different in other places, what side of him do these other people know that we don’t know? What about the bus driver? She must know his bus behavior very well, but I have no idea. I think he sleeps, but I could be wrong.
There is a friendly and animated boy who has been on Joey’s baseball team for more than a dozen years. When he arrived at the venue of a new sport we were trying for the first time his behavior grew extremely uncooperative and agitated. After all those years of sixteen week baseball seasons this was totally unexpected for us – we thought we knew him. Surely his family knows this side of him but we hadn’t seen it in the comfort and familiarity of baseball.
What about any of us? How well do others really know any of us? We only see what goes on when we are together, but even then what goes on inside might be more or less than what is going on in our interactions. My other children tell me about things they experience when we are apart and we all learn more about other people when they tell us about the stories of their life. Joey either can’t or won’t do that. I realize that I only know what he has shown me. So while I think I share everything with Joey (except for 4-6 hours when he is at school, we are together all day of every day) his outside social contacts must be as mentally and emotionally as complex as anyone’s. Perhaps more so because they mostly happen without explanation.
I do know he is always thinking and observing. While I am just discovering that I can’t fully know how he interprets things, I can say that he does get it right pretty much all of the time. I don’t know why this surprises me. Just because a person can’t do math doesn’t mean they can’t add up what is going on around them. For example, often when I pass someone asking for money at a freeway entrance or grocery store driveway I will give them a bottle of water rather than money. One day because we weren’t really in a position to get to the fellow standing there, we zoomed right on and just as we had passed him by Joey exclaimed: “He might have been thirsty!” He doesn’t understand money or why anyone might be standing on the side of a road, but by my giving someone water through the car window he had added up in his mind that when someone is out there . . . they just might be thirsty. That’s a lot of inferences if you think about it. And apparently he had been.
To read more articles by Jane, please click here.
I have wanted people to get to know my Down syndrome son. I have wanted people to know that he is more than he appears to them to be. But this must also extend to other handicapped people. And what about the rest of us? Everyone is likely more than we know them to be. More interesting, more unique, with more understanding of life . . . even the man at the side of the road. Perhaps this is a chance for me to find new eyes to see – or to try to sense – beyond just what happens in front of me, and to elevate every life in the world. To realize that the experiences of every living person are of value and have depth far past what I can see. There is uniqueness and depth in the experiences of every living soul – that is the assumption that should be made, that is the inference that should be drawn. Once again, the person who benefits most and learns something through my son, is me.
Twitter •
