He’s fourteen now. My beautiful godson. I have not seen him for nearly six months. Too long, too long. What is an autistic fourteen year old like? Like an adolescent? Like an autistic person? I don’t honestly know. I can only tell you about this fourteen year old, this precious Jacob.
Every day is different. Every day has its own map. In the maddening sameness of the “isms,” if you look, if you listen, if you are willing to be present, are the differences. If you can see beyond the swing spinning, the ball juggling, the repeating topographic form of the surface behaviors, there are the differences.
Jacob is not the “isms.” He is not the behaviors. He is not the absence of language. He is, in part, to be found in the differences: the little shadings of movement, engagement, sound and play that form the underscore of his day, and ours. But really, he is not defined by those either.
Maybe this is why I love him and my times with him. His cannot be captured by any definition or category, not even autism. He is pure being, and to be with him, really with him, that is what we have to become as well.
Is it exhausting? You bet. Humbling? Absolutely. It is like sitting in meditation ALL DAY. Rigorous, demanding, sometimes painful. Because WE DON’T UNDERSTAND, not really, but we have to keep practicing, keep our bottoms on the cushion, so to speak. Breathe in, breathe out. This is his gift to us, and yes, ours to him.