Watching (privacy and special needs)

Schuyler had an odd exchange with one of her neurotypical friends at school last week, which is hardly surprising, both for a twelve year-old girl and one wired as strangely as she is. It was a conversation rife with peril, illustrating how almost paranoid she can be when she’s afraid other little girls are talking about her (which is probably bad, because at her age, someone is always talking about someone), and illustrating repeatedly how her presentation, naive and direct as it is, can feel very much like bluntness, or even rudeness.

Schuyler steered this conversation into dangerous waters, and then somehow, with the help of friends who seem to grasp her difficulties clearly enough not to take her too personally, she navigated her way out of them. It was one of those episodes that probably happens every day to almost every pre-teen girl in America. But two things were different about this conversation.

Because of Schuyler’s disability, it took place mostly by way of text message, using the iPad that she utilizes as a speech prosthesis.

And we watched the whole thing transpire in real time.

For some reason, it’s very important to me that you should understand that this wasn’t the result of an intentional plan on our part. When I set up iMessage on Schuyler’s iPad, I also set it up on her little iPod Touch, which she uses quite frequently as well. The idea was to give her more options with which to communicate with her friends (who at the time were almost entirely our adult friends as well). But when she has a conversation on one device, they show up on the other, complete with little audio notifications.

Even when one device pings, we try not to look at what she’s saying. But when it went off in the middle of the day last week, it was clear that she was sending messages during school. That’s not a problem in and of itself; knowing that she was perhaps doing the high tech, Twenty-first Century version of passing notes in class was encouraging. But we looked at the conversation that was unfolding because it was taking place with someone who wasn’t in her contacts, someone who just showed up as a phone number, not a name. And then we kept reading as it happened. Reading, and worrying.

So yes, we watched the conversation, and we fretted about many things, not the least of which was a persistent question: Were we invading Schuyler’s privacy?

The answer is clearly yes. I can make as many excuses about not knowing who she was talking to, or not intentionally setting up her devices so they would function as eavesdropping implements, but the truth is still what it is. We were listening in on her conversation. We started because we wanted to be sure she was talking with a classmate and not a child molester, but we stayed with that conversation long after we figured out whom it was with. Out of fairness to Schuyler, we told her that we’d seen the conversation and we talked about what had gone down. But that conversation was very much after the fact.

To be honest, I’m not entirely sure how I feel about it. I’m writing this, so clearly it’s not a casual invasion. For years, we had the power of checking the transcripts of Schuyler’s daily output on her dedicated speech device but almost never did so, respecting her privacy except in a few cases where something happened at school where that transcript could clear up questions and speak for her in her own defense. Inasmuch as we could, we always granted her a measure of privacy. We still try very much to do so.

And yet, I guess our vigilance manifests itself in some ways that aren’t always pretty, or fair. And when I weigh the possibilities and potential outcomes of her new conversational world, I feel like a creeper for reading her exchange, but I am willing to accept that if it means I don’t feel like an abysmal failure later after she befriends someone online who takes advantage of her naivety and her trusting nature and hurts her one day, and I never saw it coming.

So we make bargains with the devil. We commit small crimes against our child, in the hopes that we can prevent larger ones later. That hope may be loaded with its own naivety, perhaps. But we’re a little like Linda Schell, the mother in the film version of Extremely Loud & Incredibly Close, who (SPOILER) secretly goes before her son Oskar on his desperate adventure in order to protect him from afar. In the film, she explains it to him at the end.

Linda: I went into your room and I tried to think like you did. I wanted to understand.
Oskar: You were snooping on me?
Linda: I was searching for you.

We try to go out into the world with Schuyler, which of course we can’t, and protect her from the pitfalls both of a dangerously complex world and the traps of her own making. This is, of course, also impossible. But we take on that quixotic mission because we want to hold her above the worry and the heartbreak. Doing so means standing in it knee-deep ourselves. And I suppose it means stealing from her independence sometimes, in the hope of strengthening it in the bigger picture.

I feel real hesitation to meddle in her life, and I think it might be a mistake, albeit one I make out of both love and necessity. I can’t help it. I watch her from afar, but not too far, because I love her desperately. And also because I know her monster watches her, too. But with eyes that are both cold and opportunistic.

————

Julia, site co-founder, contributes to Build-A-Bear Workshop’s blog about her daughter’s journey with special needs. Please visit to see what story is being told on our site sponsor’s blog.