I was sitting at my computer last Thursday trying to finish things up for the big fundraiser. A screen appeared saying “Miss Emily” was trying to contact me. My first thought was this was some sort of pop up ad and was just going to close it when I realized I was getting a skype call from our friend and Maggie’s former teacher, Emily. We never called her “Miss Emily” and it did not register at first.
Emily is in Poland now teaching at an international school, When she left I set up the computer with skype and a camera so that Maggie could see Emily and communicate with her. We used it a couple of times before, but not for several months. I could not remember how to make it work. I clicked on skype and her face appeared on my screen. However, I could not hear anything and began frantically pushing buttons telling her to wait. It was comical. Emily was laughing at me and I presumed she could see me. I could see her responding, but there was zero sound on my end.
I wondered aloud if she could hear me and she started hitting her chin. I cracked up – that’s Maggie’ sign for “yes.” Of course she would sign that to me. She knows that’s how I roll. Emily was using low tech while I fumbled with the high tech.
Emily, of all people knows Maggie’s signs. She relied on them to communicate with Maggie as Mag was learning her dynavox. We could all frame every question into a yes or no so that Maggie could answer. Her yes/no was and still is very reliable. There are times, of course, when Maggie toys with us and says no to everything, or when she wants to please and says yes to everything; but generally the yes/no response is a good low tech way to communicate.
I insisted when Maggie was little that she needed some way to say yes and no without a machine. Machines are inherently unreliable especially when they depend on people like me to charge and program them. I wanted her to be able to answer a question even when her mom forgot the cord, or the battery was dead or any number of other scenarios.
There was great discussion about what would be an appropriate sign for yes and no. ASL was not an option because of the fine motor skills required. One therapist wanted her to smile for yes and frown for no, but I balked at that. Maggie had several surgeries. I did not want her to have to smile if I asked if something hurt.
I’m not sure how we came up with the hand to her chin for yes, but it worked beautifully. Her no is an emphatic hand down – to her leg or the tray of the wheelchair. She loves to smack her hand down when she says “No”.
Once Maggie learned the signs she would use for yes and no, she had to take the next leap into applying them to actual questions. She knew the signs for the words, but didn't really know what the words meant in the world. I could ask her how do you say yes and she would dutifully put her hand up to her mouth, but if I asked her , “is your name Maggie” she didn’t know to use the “yes” sign to answer. That abstract step is difficult to teach. We worked on that for a while.
Once again, the remedy was low tech – she needed another kid to communicate with her. She figured it out from her brother, Eddie who asked her a question and followed it with yes or no? Do you like Eddie, yes or no? You could see her figure it out. Her face lit up and her hand flew up to her chin for a YES response. For a while, we asked every question with a “yes or no?” at the end. That dropped off naturally as she no longer needed it.
As I watch Emily using the low tech signs that are so reliable, I considered just having a conversation where I asked her yes/no questions. But that seemed stupid. As the $6 million man said, WE HAVE THE TECHNOLOGY.
I stopped fiddling with skype and the webcam and thought more basic. Finally, I realized the speakers on my computer were on mute and voila, we were connected. We had a nice long chat with complex multi-word responses. The high tech prevailed, but I knew I could have communicated anyway.
Maggie and Emily - last day of elementary school 2006. (Note, no trach yet)