The Challenge of Julianna’s Charism

She comes into our rehearsal space every week at eight p.m., walking her cute side-to-side walk and shouting, “Mommy, guess what I have! Guess what I have!” On choir nights, the boys go to the parish nursery to hang out with an amazing woman, a schoolteacher who volunteers her time so we don’t have to pay a sitter for the privilege of volunteering ours. But Julianna, because she’s in public school, goes to “church school” on Wednesday nights. And afterward, she comes to us.

She tries to sing, which is usually adorable and almost always hard on the choir’s ensemble, because she’s louder than all of them and she only occasionally tries to hit the right pitches. And sometimes, she does this:

I am always torn by this half hour of my week. We are the kind of parents who impose pretty strict behavioral standards upon our kids, especially in public. We don’t want them inconveniencing or annoying other adults. In direct conflict to this is my belief that if kids aren’t actually doing something wrong, you shouldn’t yell at them. Sometimes we yell at kids because what they’re doing embarrasses us, or makes us feel self-conscious as parents—but it’s not actually wrong.

But sometimes, I worry that we allow too much of a double standard for Julianna. I’d like to tell you that I expect exactly the same level of behavior from her as I do from her typically-developing brothers. But that would be a lie. She is different. And her charism, her ability to connect with people and minister to them, demands that we allow her to do things we would find socially unacceptable if she didn’t have Down syndrome. Things like walking up to complete strangers and introducing herself. Things like a total lack of inhibitions about asking for exactly what she wants. Like for instance, those college kids’ walking sticks, last Saturday at the Pinnacles, or a share in that toddler’s Goldfish crackers.

She is an ambassador for Down syndrome–a high-functioning, cute little girl with a silvery giggle and more charm in one folded ear than most of us have ever possessed in our entire lives. We’ve made a conscious choice to give her a lot of rein because we know how little personal contact most people have with disability, and how that lack of personal contact renders a prenatal diagnosis, for instance, a thing of paralyzing terror. We’ve given her free rein because we want her to witness to the world that Down syndrome isn’t a death sentence or even a life sentence in a prison of anguish–that it can be a life overflowing with joy.

We think that’s an important thing for the world to experience, and Julianna is well-suited to the task.

And yet there must be a line. What endears her to people at two, five, or eight is sooner or later going to render her insufferable. That was brought home to me when, barely two days after I rhapsodized about how everyone loved her off-key, loud singing, someone made a comment that told me I was wrong: not “everyone” loves it.

So on Wednesday night, when she sidled into the crowded music area and took up position right in front of me to conduct the choir herself, I felt simultaneously an overwhelming love and a writhing, cringing embarrassment. Where is the line?

As is often the case–my blog is my own personal therapist, I think–I don’t have a pat answer. Only this insight: We loved it when toddler Alex said “pu-wanio” instead of piano and “hec-a-cot-ta-ter” instead of helicopter and “hosapopo” instead of hospital. I gloried in it and I let him mangle the words until he got old enough that I thought he might start getting made fun of, and then I taught him how to say them correctly. There was a bit of grief in that process, but I didn’t regret it.

Lately Julianna has begun to prove that she can sing on pitch if she sings softly, which is to say, not at a deafening volume. (She likes for me to lie down with her and sing “Stay Awake” from Mary Poppins at bedtime, and sometimes she sings with me.) So we are thinking that after Christmas we may find someone to give her voice lessons—at least, long enough to encourage her to sing appropriately.

And I have to trust that in the same way, the opportunities and the appropriate time to redirect other things will make themselves clear in time.