When you’re raising a child with a disability, you have a fine line to walk. You can’t set the bar at an unattainable level; it sets you up for disappointment and frustration, and your child for feeling never good enough. But neither can you set it too low, because we all know kids will live down to expectations as well as up.
The best plan is to stay free of expectations altogether, and just watch as things unfold. None of us are perfect at this, of course, but you do get a certain amount of practice when you raise a child who doesn’t walk until 2 1/2 and at 5 still communicates primarily by grunt and sound effect.
And in that case, the achievements pierce you with wonder, but also something else, something sharper, like a fine cheese or a fine wine that feeds both body and soul. A fine point of joy, carving designs on the boundaries of the soul, making room for it to expand.
You already know Julianna can read. I’m told that kids with DS have trouble “generalizing”; in other words, she can recognize the words on the screen or the cards but not in other places. But Christian wrote “orange,” “red” and “green” on a piece of paper and she read them with confidence.
All that to set up a single photo. This is Julianna’s October homework packet. All month she’s been writing single letters, five each: five Ls, five ls, and so on. But this one was different: draw a face on the pumpkin, and write a sentence about it. Julianna asked for help, so I held her hand. But I did not move it for her. I only gave her support and told her what letters to write.