We admit it. We get depressed during the holiday season about one thing in particular.
We have no idea what our J-Man wants, and there’s really no way to find out.
He’s still ‘minimally verbal’ at age 9, with approximately the functional verbal speech of a two-year-old. His communication via speech device is only a little better. Mostly he expresses some basic wants about food, drink, and a handful of activities, he will answer certain kinds of questions, and then the rest of the time he scripts.
He can’t tell us much at all about bodily sensations like pain and discomfort, and rarely can he identify his own emotions. Those are just too abstract for him. We are left to guess about those, too.
As he gets older, I feel more and more like he’s a deepening enigma. He seems more and more distant in many ways. He’s approaching the pre-teen years, and we all face many changes soon. I know in my heart that so much is going on inside him – the good, the difficult, the painful, the joyous – but it has so few ways of getting out. What I can figure out about him feels like it barely scratches the surface.
I don’t even have the remotest clue what he might want for Christmas. Not a clue. We guess each year. Some years, out of what we do get him, one – maybe two if we’re really lucky – he accepts and enjoys. We find a winner more or less by educated accident.
Is it really that big of a deal if he doesn’t want to participate in Christmas gifts? Not really. Christmas ultimately has little to do with presents anyway. It’s just for me a symbol for all the things we cannot understand within him yet.
I would love to share my Christmas memories with him, what our old tree ornaments mean to us and why, the special snacks and sweets we make only at Christmas. I would love to tell him stories of my own grandmother, how she loved Christmas, and how she made us all feel special. So many ornaments on our tree came from her house after she died, and decorating our tree is in no small part full of rich memory and grief of those days that exist within our shared family memories.
I would love to know what memories he has now. I would give anything to know what he loves. Is there some form of visual art or music that moves him? Is there something he wants to build, explore, or learn in-depth about because it interests him? Is there something where he’d think, “I love this. Come do this with me Daddy,” and we could share in that experience together?
I don’t wish to change him to do what I want. Let’s be clear about that. I do want to know what he wants in and with his life. I want to know what he dreams about. I want to see at least some of what he sees in the world.
But I can’t. At least not yet. I will still hold my faith that we will be able to share these and more together someday. Until then, I sit with him, I talk to him, I learn everything about him that I can. We think of every way we can give him the opportunities to discover what he loves and who he wants to be. And Christmas, particularly Advent, reminds me that this is really a season of waiting and hoping. That continues to be our path.
Instead we make educated guesses, and for now that will have to do.