Rebecca is full of surprises. Rebecca understands absolutely everything that is being said and is said. Don’t think she doesn’t. She does not tolerate people talking over her.
The Dyna box
Dyna box is probably the size of the computer screen and is a communication device. There’s a teenage “page” on it and some other things on it that aren’t quite appropriate but very teenager-y. It has all of her things programmed on it. She has her school papers on it. The technology is incredible. She’ll be able telephone and call people so that will be interesting.
A barrier in communication
I can’t understand when she’s in pain and where that pain is coming from so that I can help her. Kayla has been through lots of surgeries, and we’ve had difficult times, and we almost lost her a few times, and of course that’s stressful the fear of death. But I’d say an every day stress is when she wakes up in the middle of the night crying, and if she does, it’s going to take me some time before I can realize if it’s a bad dream, or if it’s a spasm, or if it’s pain.
She understands everything. People who don’t know anything about cerebral palsy, they think that when you look at them, they don’t understand anything. And I get down on them she understands everything and she understands what you’re saying. She just can’t verbalize, so now we’re trying to find ways for her to communicate with us. We know how to communicate with her, and we know what she wants, but other people don’t.
Methods of communication
She uses her computer and her eye gaze. When you give her three choices, and when she knows what she wants, she looks to her right side. When she looks to her right side she means “yes,” she does want it. When she looks out at the left, she means “no,” and when she looks at the ceiling, it’s “I don’t know the answer” or “I don’t care.”
Vanguard: A communication device
His nickname is “eagle ears.” To be perfectly honest, we’ve talked many conversations with him around thinking he doesn’t talk, he took everything in. He took everything in for eight years, and my wife always said, “Be careful what you say around him because once he can speak .” He remembers things. This year he’s actually exploded with this device his range of speech and the speed. You have 84 squares and every time they change, so he’s not doing the same speech. He knows where to go on the page, so I can’t even tell you how many squares he’s memorized.
Being up front
We’re very upfront with Katie. Although she is very, very medically involved and can’t do a lot to help herself, cognitively she understands everything that’s going on. So we’re upfront with her. We have a calendar in her room. And we write the appointments on her calendar so she knows what to expect. After her spinal fusion, often we would ask physicians to take off their white jackets. I don’t know if it helped, but for the moment it worked so you just ride the wave. I think that being fifteen we give her as much control that we can regarding her appointments by asking if she understood what’s being said. What does she think? How is her pain level? In the beginning, we were just guessing. Now she has a communication device that she uses, so she’s much more involved in appointments and I think that did help.
Everyday she does something. We were joking about April’s Fools Day, and her father was teasing her about her hair being a mess or something. So she told my husband to “go take a hike” using her communication device. I almost choked on my dinner. How appropriate was that?