Wednesday, May 22, 2013


A few weeks ago, I took both girls to the park. Hannah immediately rushed from one piece of equipment to the next, barely playing on anything for more than thirty seconds at a time. I'd warned her that it would be a short visit, given Zoe's fatigue after a long day at school, so her haste was understandable. Zoe's energy level lived up to my expectations, so we hung back a little, and it was clear she wasn't fully enjoying her time on the slide or the swings. There were two other little girls playing, also sisters, close to Hannah's and Zoe's ages. They tried to get Hannah to play with them, but she was too bent on her mission to spend time on all the play equipment before the world ended, so they wandered over to say hi to me and Zoe. They asked my girls' names and ages, and I asked them the same. They seemed intrigued by Zoe but didn't ask many questions about her. I could tell when they heard she was four that something about her lack of mobility and verbal ability struck them as unusual.

When we got ready to leave, our new friends came over to say goodbye to Zoe, and I told Zoe, as I always do, to say goodbye to them. One of the girls waited, cocked her head, and said, "She didn't say goodbye." Immediately I replied, "She can't talk." I am 39 years old. I am married. I dated other women before getting married.  I have said many unwelcome or ill-considered things, given an extra drink at a party or a dinner out. I have caused many awkward cab rides home. I cannot remember, however, a look shot my way quite like the one Zoe gave me when I told this little girl she couldn't talk. She looked embarrassed, she looked frustrated. We were having such a good time, but I had to go and remind her that she couldn't just be a little girl playing in the park with a new friend. That night, when I put her to bed, I promised her I would never do that again. I promised her, I would tell people she couldn't talk yet, and she smiled in relief and went to sleep.

Since Zoe can't speak yet, we have a communications device for her. When she was two-and-a-half, we took her to Easter Seals try out a Tobii. It's essentially a Windows computer that gets input from a device that tracks what part of the monitor Zoe's looking at. She adapted to it almost immediately (as do many girls with Rett, further testament to their intelligence). We were lucky enough that the therapist at Easter Seals helped document this to a degree that our insurance and the Illinois Early Intervention program split the bill for the most expensive thing in our house right now that is not actually our house.

We were lucky to get it. We're lucky to still have it and use it. We know families outside Illinois who haven't gotten the same assistance from their state health programs (including states not subject to the same budget crisis as our own), who've had to rely unsuccessfully on their insurance company for this necessary device. It is incredibly necessary for girls like ours who not only can't talk, but also don't have the motor skills for sign language.

Zoe loves having it and using it, but I'm sure there are things about it that aggravate her. The Tobii's default setting is to speak in a woman's monotone. There are multiple voice options; those options are other unlikely and uninteresting monotones. None of them are her voice, just an artificial substitute. There is very little about it -- its size, weight, or lack of portability -- that make it easy to use spontaneously. Once it's mounted on its tripod and booted up, she has to navigate to the screen she wants. It is probably as deliberate a process for her as if you or I had to communicate every urgent life need through a game of Charades. And to start out, that was all we programmed: urgent life needs. "I'm hungry." "My head hurts." "I want to lay down." There were all useful statements, but what about the times when those options didn't capture how Zoe felt, but she still wanted to talk to us?

About a year ago, my wife and I read a book called Out of My Mind, a young-adult novel about a girl older than Zoe, with a different neurological diagnosis. But like Zoe, and other Rett girls, the main character was non-verbal, and she relied on a hand-activated communications device. I was struck by how valuable it was to her to say the most mundane things with her device. We had completely stifled 80% of what Zoe probably wanted to say, thinking we needed to save the Tobii for the important things. But the overwhelming majority of the entertaining and memorable things Zoe's sister has said to us since she could talk have been the vastly unnecessary, nonsensical, and unimportant things. I finished the book and spent the next week writing out new Tobii pages, grids of commonplace things for our girl to say once we programmed them into her device. Lately, we've tried to capture many of them under a rotating group of buttons called "What's New." Her teachers know to look there before they have Circle Time at school, so Zoe can tell her friends the simple things that are...well, new.

Not all mundane statements are necessarily harmless. In an effort to give her a means to convey how she felt, we programmed a button to say "Go Away." She, like all kids, should be able to say that to us. She mostly saves it for her speech therapist (who she loves, but presumably annoys her every now and then). Sometime soon, I may program a "Shut Up, Hannah" button for her older sister. It's not nice, but what little sister shouldn't have the right to say that (and Zoe, we've all thought it). The least harmless statement was one I grouped under buttons explaining why she might be sad. "I'm sad because I can't do what I want." Her teachers let us know when she says it in class. We've heard her say it once or twice -- too many times. And each of those times, I've made another promise to her I may never be able to keep.

But mostly these buttons allow her to chat, even if she can't talk yet. A new girl joined Zoe's class not long after the New Year. The new girl is undersized. We have no idea what her condition is (this matters more to other special needs parents than we would care to admit). The first day, even though the girl had already been introduced to the kids, Zoe asked her what her name was. Since it was said in the Tobii Monotone, we don't know what sort of mood Zoe was trying to convey. It could have been small talk, asking the girl a question to which she already knew the answer, just to chat. Or she may fancy herself the class bully, unbeknownst to any of us, and she could have been trying to intimidate the girl for fun, in a very "Shawshank, new fish", kind of way. Until we find out differently, we'll assume it was just small talk, and a little small talk is a good start.