Maggie has never had speech – she is non verbal. I was asked recently how Maggie learned to communicate. The question sort of stumped me, because Maggie could communicate with me from the moment she was born. That's true with many parents and children. At first it was with her eyes, then a combination of her eyes and her facial expressions. Sign language in the universally accepted way was not an option, her cerebral palsy prevented the complicated motor function required for ASL. Eventually she learned her own sign for yes and no that became very reliable. Hand up to her mouth for yes and hand down on her leg or the tray of her wheelchair for no. At times, the “no” would be so emphatic, she would pound her fist on the tray and one of her brothers would tell her to stop “shouting”. That always made her laugh.
Even though she could not talk, Maggie still had her voice. And I’m not speaking metaphorically here. She used to yell her head off to get attention. And it worked. Especially in church. After several years, She had one word – MAMA. She would whisper it, yell it, change the intonation in her voice so she could sound mad, excited, happy etc. In March 2007 Maggie had to have her tracheostomy tube put in place. That eliminated any sound, including her one word. I miss that.
Losing her audible voice did not stop Maggie from communicating, however, now she kicks the side of the bed if someone dares to leave her alone for a moment. She pulls on tubes, which she knows will bring us running. She gets what she wants. (S P O I L E D). And she still has the other methods she’s always had. Maggie’s smile is a very useful communication tool. She engages people with that smile. She also manipulates them with it. She has a great future as a con artist.
But for all of her 14.5 years, Maggie has been working with communication and now has become fairly proficient at a complicated communication device. Think Stephen Hawking, the physicist. Ok, she is not talking about black holes or anything, but she can maneuver a combination of switches to operate her dynavox. It speaks aloud the words or sentences she chooses. She tells jokes, calls me, asks dad to read stories, calls me, makes sentences about her brothers (generally she says they’re stinky), tells her nurse to “come here”, calls the dog, calls me, asks questions, tells me what to do, and shares the news of her school day when she get home.
A lot of the time she is using it for entertainment, saying things like “Mom is Tuesday” but generally she is communicating, connecting. Even if an individual is not familiar with the machine it takes only a moment for them to say, what is that. Is she talking to me? And when someone answers – wow! It sends Maggie into orbit. She can say Mom come here five times in a row. And when I march up to her and say “WHAT?” five times in a row, she laughs her head off. She uses the device not only to communicate her physical needs or to converse, she uses it to connect with others around her. Good for her. Good for us.